Cancer, Death/Dying, Grieving Voices Guest, Grieving Voices Podcast, Podcast, Widowhood |
Michele Neff Hernandez | The Soaring Spirit of a Widow and Fatherless Daughter
SHOW NOTES SUMMARY:
In this week’s episode, Michele of @soaringspiritsintl and a 2021 Top 10 CNN Hero, shares her story about the challenges of blending a family, but then enduring a devastating loss and grieving as a blended family.
But because grief is cumulative and cumulatively negative, a previous divorce, followed by the sudden death of her spouse, then the death of her father, taught her so much more about what it means to grieve well.
It’s hard enough to be a widow and raise your own children, but few talk about the challenges of grieving with the children you raised as your own with a spouse who is no longer living.
By the time her father’s health was declining and he was put into hospice care, Michele had been around the grief block and was able to support her mother in a way she had never anticipated. And, the loss of her father, starkly different than the recent loss of her spouse before his passing, opened her up to have meaningful conversations at the end of his life that she still treasures today.
Grief has been the catalyst for what was initially going to be a book but later morphed into a movement in what is called Soaring Spirits Camp Widow which takes place in several locations around the United States and now in Australia, too.
What is your grief trying to open you up to receiving? Michele allowed her heart to soar in the wake of her devastating losses. Let this episode inspire hope and instill the understanding that grief is what we make of it.
We can allow grief to destroy our spirit, or we can allow it to aid us to transform our suffering and soar.
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Victoria Volk 0:00
Hi this is Victoria of theunleashedheart.com and you’re listening to grieving voices, a podcast for hurting hearts who desire to be heard. Or anyone who wants to learn how to better support loved ones experiencing loss as a 30 plus year graver in advanced Grief Recovery methods specialist. I know how badly the conversation around grief needs to change. Through this podcast, I aim to educate gravers and non gravers like spread hope and inspire compassion towards those hurting. Lastly, by providing my heart with yours and this platform, Grievers had the opportunity to share their wisdom and stories of loss and resiliency. How about we talk about grief, like we talked about the weather? Let’s get started. Thank you for tuning in to grieving voices. I’m your host Victoria Volk. And today my guest with me here is Michelle Neff Hernandez. She is the founder and chief executive officer of soaring spirits International, a nonprofit organization providing peer support programming for widowed people worldwide. Michelle is the author of different after you rediscovering yourself after grief or trauma, and is set for publication by New World library in February of 2020. To her passion for supporting widowed people in the power of integration feels her presentations in her community activism. She is also one of the top 10 cnn 2021 Heroes of the year for the work that you’ve been doing, and also for the impact. So thank you so much for being here and for the work that you do. So needed.
Michele Neff Hernandez 1:50
It’s a pleasure. And I am Thank you, thank you for those kind words.
Victoria Volk 1:53
What was your life like before all of this?
Michele Neff Hernandez 1:59
So different. Which is is a part of the reason why the title of the book is different. After you I was a personal trainer, I owned my own personal training company. And I was parenting a blended family of six, my late husband Philip, and was just actually in the process of building his own air conditioning and heating business. And so we were both self employed. And we had a combination of six kids together, he had three from his previous relationship that were teenagers, and I had three from my previous marriage where my oldest was when we got together. My oldest was eight. So we had three littles we call them and three older ones. And you can imagine blending a family of six, I am actually the oldest of southern children. So it wasn’t as foreign to me as it might have been to other people. But we lived a very active lifestyle. He was really he was a truck Coach and an athlete. And so we shared kind of this passion for all things like and then we were sharing this big, crazy wild family as well.
Victoria Volk 3:09
Wow can you speak to a little bit about, like, I don’t know what that’s maybe the possible grief that even just a blended family and trying to navigate the relationships among the children. You don’t have to go into detail or anything. But just with those first few years, or maybe like,
Michele Neff Hernandez 3:26
I’m so glad you asked that because one of the one of the key messages in the book is about integration. And it’s about taking all of the difficult things that have happened in our lives and technology, what we grieve about, what about what that experience has brought to us. And then also taking those things that we’ve learned from moving through that experience to help us with other experiences. So when I got divorced, I was crushed. I had I got married at 20 years old, I was only 20. And I thought it was forever. And I was really just I went through a really difficult period of disillusionment when my marriage ended. But it wasn’t a choice that I would have made but ultimately participated in. And so here I was, with three little kids and feeling like I had to recreate my life and I didn’t want to, I went through an angry divorce kind of attitude for a little while and then finally sort of settled into knowing that I needed to do something different and right about that time, Phillip Hernandez walked into my life on a track actually. And again, he had had his own experience of not having the relationship that he started very early in his life, work out the way he had hoped. And so when we came together, we came with two very different parenting styles. We came with different loss experiences around how our relationships ended. And it was hard work. And I think I never really thought that the work that I did around I divorce or the blending of the family that Phil and I then sort of came into was going to be useful in any way. But I will tell you that after he died, though I didn’t want to single parent, I knew that I was capable of single parenting because I already had. And I kind of leaned into the lessons that I learned while we were bonding or what it’s like to really honor and recognize the different needs, because you can imagine, right, there’s eight of us. And everybody had needed something different. They needed something different from each other, they needed something different from each of us as parents, they needed a different thing from each of us as a as a perinatal unit. And so when I’ve told people wanting that family is one of the hardest things I’ve ever done. Because the unique pole and push of what people need from this family experience less so tough. And we wrestled, I will say for sure it was difficult. What we kept coming back to was that we really loved our time together. And we wanted to make that work. And so I tell people, make sure you have dates. Because if you can’t remember why you chose your partner. I mean, I think that’s true for every relationship, but particularly if you’re blending a family because you have to remember what brought you together during the times when it’s really difficult to find a path forward. And I had heard every member who told me that at some point, somebody said something like takes really about five years, and I was thinking to myself, No way. No way is it going to take five years to make this family feel like a family. And really, he died after five years and three months. And I can tell you that we had really kind of hit our stride. Like we felt like a family. And it wasn’t that it was easy. But I don’t think any family is really easy. But it did feel like we were a family for him to die. Right at that time. It felt like we were robbed of what might have been, I think,
Victoria Volk 7:03
And the kids too, because I’m sure that they settled into this new life and new family unit. And
Michele Neff Hernandez 7:13
Yeah, and without him, we sort of ended up in two different camps of trying to figure out how to grieve Him. And so that definitely was another was we talk a lot about in the grief world about secondary losses. And in the early stages, I was a primary loss, but going forward in my life has remained a secondary loss, which is they really needed to find their own way. And, and in a lot of ways that didn’t include me. And I needed to be okay with that, even though I wasn’t. And so that’s been another piece for all of us, I’m sure. But for certainly for my three kids and myself, that was another piece of what we had to make our way through. After he died. He was the linchpin, right?
Victoria Volk 7:55
Well, and even the relationships that kids had with his kids. Yeah, for sure. Layers and layers and layers of loss and
Michele Neff Hernandez 8:02
So many layers. Yeah. And I feel like that’s, that’s a part of what has brought the deepest lesson. So it’s that these differing layers of loss, I think, I never went feel died, I had never grieved anyone very close to me, my grandfather died. But I, it was at a time in my life where, you know, that’s sort of not exactly expected, but it was it didn’t affect me personally in the same way. And so I never really had an adult brief experience. And I think my initial thought was be the hardest part is going to be the early parts. What I learned was that the harder part was learning to live without him physically present, and figuring out how I maintain a connection with him and how we as a family navigate what each of us needed. Because once again, we’re in a place right where there are seven of us and the seven of us all need something different in order to move through our grief experience. And I think as a parent, that was the hardest part was I was living my own experience. And then in addition, each of the kids was gonna be theirs. And as we know, for children, no, they process at the age they are and have to keep reprocessing at every new age. And so I just felt like it was an eternal grief wave that kept coming from every different direction, each different kidney and a different thing. And as they understood it differently, being pulled back into that it really was an evolution for us of walking through each new step. And for me as a parent, that was I think the hardest part was just knowing that each one of them were never done grieving. In my opinion, I think it’s just a way of life and it becomes a part of who you are. But for kids in particular with the new understandings that comment different ages, there’s a deep processing that can happen at each different age. And I think I had a sense of that initially, just because as an adult like I thought he’s not going to be present for any of this kid’s weddings, he’s not going to be present for any of our children’s weddings. And so, when my daughter got married a couple of years ago, we found ways to honor him. It had been, he had probably been dead 13 years, I think, yeah, it’ll be 30, it would have been 13, I’ll be 60. Now they’ve been married for three. So he’d been dead for 13 years. And, and all of us felt the absence of him, let’s suspend sort of our ongoing understanding of what it’s like, when you live with grief.
Victoria Volk 10:29
I understand that deeply, too. I was a child Griever, my dad passed away when I was eight. And so I can speak to that, that we grow with our grief, like our grief changes with us every phase of our life and manifests differently to at different phases as well, if it’s unprocessed and on undealt with or not looked at. Yeah,
Michele Neff Hernandez 10:53
Well, and we talked to you and a tiny bit before we began about my name, and my dad just died will be a year coming up in April. And she was a key part of my life and a key part of my process. And I’m recovering from my grief. And I really wanted his name to be on any book that I would publish. And so right about the time that I decided that I wanted to write a book, I returned my maiden name to my name in order to be able to make sure that, that any book that I would eventually publish would have my dad’s name on it. And so it has been just wonderfully bittersweet for him to have been, he was able to be a process of the writing. He knew that I that I had gotten a publisher, he knew the book was coming before he died, he got to hear the title. And there were just a lot of pieces of it that he was able to participate in, but having his name on the book made a big difference to me. And that’s something acknowledging that that desire to continue to have a connection with the people we love goes on and on, no matter how old we are, or what our grief experience, where it may take us. I feel like that ongoing connection is such an important piece.
Victoria Volk 12:12
Even in unloving relationships, the relationship still continues after the person passes away living or dead. I mean, those relate, or you have relationship with people, and D, have you looked back then I’m sure you have. But when you father passed away, which I’m sorry, during COVID, were you able to be with him?
Michele Neff Hernandez 12:32
We were so fortunate, I mean, and and to speak to how my past grief experience has influenced my current grief experience. That’s what I was getting on? Yeah, yeah, for sure. Well, I mean, and again, all this while that he’s dying, and I’m writing about this. And so we’re writing about the power of integration, and how allowing myself to be changed by what I experienced my grief experience with film led me to understand better the tools that I that I used to survive that and those exact tools were such a gift to my family. So as I said, I’m one of seven, and my dad decided that he wanted to access hospice care. And we were able for six months, during COVID, to take care of him all of a sudden of us. And so we ended up with an incredibly beautiful death experience, especially with the work I do. We’ve participated in providing care and support and resources for COVID, widowed people since the beginning of the pandemic. And so I’ve heard the stories that are heartbreaking, and understand very deeply how fortunate we are to have been able to care for him at home, right to the end of his life. It was some of the hardest work I’ve ever done, for sure. But because of my grief experience, I was able to kind of lean into it in a different way. And my husband was killed in a cycling accident. So there was no opportunity to care for him, there was no opportunity to say everything you might want to say. And because of that I understood how valuable that was with my dad. And we didn’t leave anything unsaid. And I again, I recognize that that’s a gift of both the relationship we have the family dynamic that we are fortunate to have built and and maintained. So there’s a lot of pieces there right now. But you know, ultimately, our ability to be present was impacted by my grief experience for sure.
Victoria Volk 14:36
Well, you bring up a good point, just in sharing them. Thank you for sharing because it isn’t that way for so many people. And so we can’t assume that people have it, the same way we do or the same type of even relationship that we do with our loved ones. And so assumptions really can create some hurtful comments.
Michele Neff Hernandez 14:59
And I I think that because I’ve worked with so many widowed people over my career, I just have a breadth of stories and and what I always feel is what I love about community for grieving people is that it gives you the scope of experience, right. So you may not have had a great relationship with your father, and you may not have a great relationship with your siblings. And maybe you weren’t even able to be present for your, your father’s death. And so that’s one that’s one side. And then there’s the story I just told, and then there’s so many in between. And it helps us to know that there are so many different ways that we live in relationship, and that the way we live in relationship is going to impact how we grieve, as well as every situation related to how our person died. And so I value that about our community, because it gives you this sense of, there isn’t one way to do this, there can’t be because there’s no one situation. And so every situation is going to be influenced by relationships, by what we know about breed by what we’ve experienced in the past. And that’s the key work of integration is being able to allow ourselves that I feel like there’s such power in that. And that became because of that belief, the focus of my vote.
Victoria Volk 16:11
So do you feel the first step for many people who find themselves in a situation of loss with not knowing where to go or where to turn to? The first thing to do is to look for support?
Michele Neff Hernandez 16:24
I do, and a recognize in saying that, but some people will say, I don’t have any, there just isn’t it because again, some of us are walking this route alone. But what I know for sure, is that people who have access can find that access to a community will be able to understand that there are other it’s lonely and isolated, and grief is isolating all on its own. Even if you have the best possible support. We’ve all heard stories of people saying I was in a room with 100 people. And I felt because my grief isolated me in such a way that I didn’t feel connected to anybody else around. And so that is true already in the best of circumstances. And when people are struggling on their own. And using my Dad’s experience, just as one example, I kept saying to my siblings, I don’t know how we when we when one of us would be on vacation or need a break for whatever reason, or have something that had to do. We were like, who’s going to cover and there were seven of us, including my mum eight. And so knowing widowed people who have done that, caregiving for years on their own, with literally no one else made me just so hyper aware of how hard that would speak for them. Because it was hard for us. And there were many, many hands to do to work. And so when you think the not single person is thinking, how am I supposed to find support, when I’m just overcome with five years worth of caregiving, I’m exhausted, and I don’t know where to turn. And there wasn’t anybody to help me when my person is dying. And now my person has done the work of soaring spirits provides that kind of for widowed people virtually and in person so that they can connect in whatever ways feel right for them. And my first sense whenever anyone’s grieving is to look for a community of support. Look for other people who are grieving the way you are. Social media, while it has all of its challenges has really allowed us to be able to find groups. And I’ll say, it’s also really important to make sure you find a group that fills you up and doesn’t drain you because certainly the tenor of your group makes a difference. But finding a group and a group could be one. It could be two, I’m not, it doesn’t need to be a community of 1000s. It could be just a community of one or two. But connecting with one or two people who are also agreed, just helps normalize the experience all that stuff you yourself and you are talking about in your brain. It’s helpful to get that out and have someone else say that makes sense to me. It helps remove that sense of am I losing my mind, this makes me feel out of control. There’s so many things there that can be normalized, just by knowing someone else had the same feeling.
Victoria Volk 19:12
You said a key phrase earlier and you said, you’re allowing yourself to be changed. And I think for so many of us, Grievers for me personally knowing it intimately and acutely well and how it changed throughout my life. It’s why my art for my podcast is me sitting on an island with a megaphone, because you feel like you’re just you want to scream to the world and nobody’s listening and you’re screaming on the ends. That’s why my art is what it is because that’s that’s how you feel as a griever so often sure, yeah.
Michele Neff Hernandez 19:50
And that’s especially when there isn’t anyone to validate. And for me, that’s the that’s the beauty of the community piece. But coming back to the chain Just I think one of the most harmful things that Grievers can do to themselves is set going back to normal as the bowl, I need to get back to normal, I can just get back to normal, then that means that grief hasn’t won, I’ve made my way through. But the reality is that we are absolutely changed. And every time we pretend that we aren’t, we’re fighting ourselves, and we’re setting ourselves up for failure, because we keep telling ourselves when Trump’s gonna get back to normal. But life isn’t, what was normal can’t ever be, especially for someone who’s grieving, but really, for anyone who’s lived through a traumatic experience. And I like to bring it down to this just one simple thing, which is you can’t unknow what the things that that you’ve learned, whatever day your tragic experience happened, you will never forget those. And so just by virtue of that one single thing, things can never be the same as they were before. And then here we are fighting to make it the same, feel the same be the same person that I was before whatever happened for us, it’s a grief before my person died, I want to go back to that version of me, that version of you cannot be returned to. And so then then what does that mean? I’ve heard so many greeting people say all the while I’m not as good as I used to be. I’m less than because of my grief experience. And there was a time in my life where I was parenting six kids, I was working two jobs. I was building a community for widowed people. I was trying to write a book, I was maintaining a relationship with my family and friends. And all I wanted was feedback to the other girl who could manage all the things better. And so because it didn’t matter that I was doing all those things, if I couldn’t wreck that this person that was surviving, this horrible thing was valuable, it wouldn’t have mattered who else told me it’s valuable, didn’t matter what number of things that I did, nothing mattered until I decided that this new person that was born from the experience I lived through was not. And so I needed to allow that change, I needed to allow myself to be changed. And that’s been such a critical part of my personal growth. But also the ways in which I’ve been able to support other widowed people have been the crux of that, which is being able to find the value itself you are now.
Victoria Volk 22:27
So what did that look like for you? early on? When you mean you were starting to build that community and you were doing all these things? But what was what was helping you I know you were reaching out to other widows to better understand and in build community. But what did healing look like for you? What was that process?
Michele Neff Hernandez 22:47
I think that the key for me, was coming to a place where I realized that I it couldn’t be the same as it was before. And I think the key is being able to allow yourself to be broken. And that was the thing I wanted to do would be broken at all costs. If I could just not be broken. That’d be good. And so my constant need, I’ll give you one quick example from the book. I was going to run a marathon when I turned 40. And Phil and I were going to do it together. So we had set this goal, he ran a marathon. And he wanted and he was like, Okay, it’s going to be your turn. I was like not right now. How about when I turned 40, we’ll go white, and we’ll run a marathon and you can be my support person. Great. That was the goal. Then he died when I was 35. So I’d five years. And I thought, okay, that’s still going to be something I must do. In order to prove that I’m not broken, I have to meet every goal that we set prior to his death. So I start training for this marathon, I’m in trouble. I am struggle, I have all of those things that I just listed going on. And now I’m also trying to run a marathon. And by myself, I don’t have the support that I did, then I don’t have anybody else in my life who lives close enough to me to be able to support this marathon thing that I’m doing. And so just keep doing it. Keep doing it. One day I went 80 miles, I run nine miles through three cities, I get to the third city, I’m turning around because it’s turnaround route. And I start crying. I’m like, I have to run all the way back. And I thought, why am I and the reason was because I didn’t want to be. And I thought that if I did not meet every single one of those goals. I’m literally nine miles from home. I can’t there’s no one to call. I can’t call someone and say come and get me. I have to run back. So I run back those nine miles because walking was just going to take longer. And I got home and I thought I mean I’m just not doing and freeing myself from the judgment. I ended up I had the nerve and I was training for the LA Marathon because I had decided I’m not going to also travel so I’ll just run the same one he ran. I watched it on TV from the couch. And I thought this was the right choice. Assuming, and that was just the beginning of understanding, okay, you don’t have to do all that you can be different. That doesn’t mean you’re out valuable, it doesn’t mean. And ultimately, to end that story, it even didn’t mean that I wasn’t going to run a marathon. Three years later, my daughter decided that she loves running and through a crazy situation of one thing after another, she and I ran a marathon together. And so it was that it was, I don’t know that that would have been possible, I hadn’t been able to release myself from that first spirit on, because I’m telling you, it would have been miserable, I would have been miserable. And I probably would have been like, I’m never doing that again. Instead, I said to myself, I don’t have to do this, I’m only doing it to prove it to myself, no one else cares. And allowing, and even if they do, I can’t, I don’t want to, it’s been in a position where you’re able to say, I can free myself from having to be who I used to be in the exact same fashion course, there’s going to be a lot of things that are gonna be similar about the person you were before your person, your grieving died, and the person you are today. But there also might be some differences. And allowing for those differences was the beginning of me understanding the value of accepting that when we’re broken, when we can be broken, that means there’s space for healing, for as long as we pretend like we’re not broken. What are we healing from?
Victoria Volk 26:25
So much there? I’m curious, was it just this thought process that you had within yourself this dialogue that you had within yourself? Or did you look to external things to help you process your grief? What I’m getting at is, are some people just built differently as Grievers? Like do you just have this thing in you?
Michele Neff Hernandez 26:47
Well, I mean, I think that’s true, right? Just because we’re different as people. So yes, I think that’s a part partly true about every person. But at the same time I was, you know, this, I was also building that community and hearing story after story. And the thing that people would say to me most often was, When am I going to be back to myself? When am I going to recognize myself again? And so we think the, for me personally, the pairing, the desperation, I heard from other people, when I could clearly see their vote. And so then that was the beginning of understanding, okay, well, if I can clearly see their value, and they’re telling me that they want to be back to the valuable person to use it, then how does that apply to me? And so I think that there was this pairing of coming back to what we talked about, in the early part of the episode, this stand of what you understand, when you’re in community, you get the access to all these different experiences that may or may not be like your own. And I think some of the most valuable ones are the ones that are totally different from yours, because now it’s okay, I have this scope of experience to reference when I’m thinking about and processing my own grief. And so I think for me, personally, the combination of, yes, I am a person who is able to self reflect, I am a person who has had that experience in my lifetime, right. So when we think about how we come to greet and come with experience in our life, and for some of us, that will include self reflection, and for some of us, it will not. And so that will be harder for people who haven’t had that experience before. It also will be one of the gifts of their grief experience if they allow themselves to self reflect. And so each one of our experiences in our lives, whatever they are, the difficult ones seem to have the most impact, right, that we aren’t as impacted. We think by the big beautiful things that happen to us, as we are sometimes by the things that break us. And I think being able to have access to so many people who had been broken in a similar way to me, helped me to sort of see a path forward. It was kind of like if you saw markers all along the road, and it was like, Well, wait a minute, this path seems to be delay. When I look at all of these markers that have been provided by the number of widowed people that I was fortunate to have access to. And I come from a family of community, our family always believed in community. And so again, when we talk about integration, I was integrating the lesson I learned as a child, which was community can be built, and it’s valuable. And because I knew that, I was able to say, Okay, I need a community. That’s what I need. And then building one was both by accident and design, because in the early stages of widowhood in the early stages of grief for anyone, right? We’re all struggling with whatever that early stage looks like my early stage included, please tell me where my people are, because I need them. And that’s something that I learned from my life. And so for people who haven’t had that experience, I think they don’t have that same natural desire to find it. And that’s why I like to talk about it. Because if you don’t have a natural desire to seek community Need, it might not seem valuable to you. But I have met person after person after person who has said, I’m typically not a joiner. I’m an extreme introvert wants nothing to do with people, I don’t really like people. And all of them have said I can’t believe community is because suddenly, there are those markers along the road. And that’s going to be different for each one of us. And the path forward will be slightly different for each one of us. Being able to have some markers makes a difference.
Victoria Volk 30:30
I want to just highlight one thing too, in that you are actually an entrepreneur when you experience this loss. And so I think, when I always tell people like they’re nothing will teach you more about more life lessons than entrepreneurship, motherhood, breeds.
Michele Neff Hernandez 30:49
All of them bringing my age, yes,
Victoria Volk 30:51
your age. And yes, I think just being an entrepreneur, it’s you have this sense of sense of self that maybe a non entrepreneur doesn’t and it on entrepreneurship brings out all of your insecurities, as does motherhood. And so we bring these lessons. And then when grief hits, if we already have some sort of sense of leadership of our lives, or in our lives, I think we naturally will, like you said, like you created that community, you were a leader to create this community.
Michele Neff Hernandez 31:21
I think that is definitely true. And also, we should say, I’m the oldest of seven children. So I’ve been bossing people around since I was born. But I do want to mention, like so many times. And when people hear my end, even if we talked about seeing the years, it’s the same, it’s look, this is what you build, which is true. What I always want Grievers to know is that we each individually have our own path forward. And we’ve lean on, like you said, all of the lessons that we have already learned in our lives. And so because it’s different for each one of us, I’ve had people say things to me like, well, I didn’t do what you did, it doesn’t matter what you do. It matters, how will you give yourself spacing, that’s the key message is being able to allow yourself your unique path. And so those markers on the road for you, when other people community, they’re going to be different. And that’s all going to be influenced by everything you already know, everything you’ve already experienced. And absolutely for me, it’s natural for me to lead. And it’s natural for me to gather people. And so this community came together, because it’s what I needed. And in order, I thought I needed it clearly someone else needs it, too. And so that desire really was to provide that space for other people that it’d be easier for them to find it. And yet, I didn’t really ever think about the fact that people might say, well, you have to do something big with your grief experience. I think what you have to do with your grief experiences, integrate it, and then your life will take you in the direction and sometimes a very new direction. But surprising because when we allow ourselves to be changed, then we can ask new questions. What does this need this need, did not need to run a marathon when I was 40, it didn’t work for this knee, it would definitely have worked. If I feel confident it would have worked for my 35 year old self had my husband stayed alive. And we had planted that together, we would have been very excited about that. But because that was no longer the situation, if I didn’t respond to that change by allowing myself to have what this version of myself needed at the time, then I’ve robbed myself of that growth and that ability to be different. And I needed that I needed to and even still, even those first five years. So think like I feel died when I was 35. That experience was when I was 40. And so I’d already been widowed for five years when I needed to make that choice. And I was still telling myself the story that if I didn’t meet all of the goals that he and I set together, I was failing. And so even five years in with an organization, it was a baby then but it was an organization that was started with events that were being held with standing on front of the stage in front of widowed people talking about my experience still holding myself to a standard that was not good for me.
Victoria Volk 34:01
Did that make you sick?
Michele Neff Hernandez 34:03
It’s funny is that I did some I did some interviews in the early the first year of my grief. My first the the actual idea initially was I was gonna write a book, having interviewed 30 Other widowed people. And so I went on this crazy journey starting when I was four months widowed, to interview people across the country on weekends, because I still had to work and mother and do all the things. But anyways, I got sick after every interview. And it didn’t really realize it until I had finished all the interviews and I was going back to my calendar to write them all in. And every time I looked, I had a paper calendar at that time, every time I looked, I would see that I had rescheduled my appointments after I got back. And not only did that when I’m sick, and I got sick after every single one. And so definitely that physical connection and the thing was that that’s very natural for me, because as a personal trainer, I would train people about how their physical selves were responding to their emotional selves. And so now I’m here I found myself in the reverse of that really being firmly rooted in my emotion, and sometimes forgetting how that was going to play out in my body. And so it was a really interesting lip of story for me as a athlete, and for me as a person who was breathing to really recognize that to see that in action was was, at some point really cool and other points super annoying.
Victoria Volk 35:25
So we just had Valentine’s Day, how did you spend it?
Michele Neff Hernandez 35:29
I am remarried. And I have a lovely husband, who has been so supportive of all of this. And so today is book launch day for me. So yesterday, we celebrated with sushi and an eating in so that we weren’t out with all the people who were lined up hoping to get a table, but it was lovely. And you know, what I tell people, my post actually on social media was about remembering that, while Valentine say seems to always be focused on on the romantic love, it’s really about like, it’s about love. And it’s about all the left. So I posted pictures of everybody I love because, for me, you know what, one of the things I think that’s been so valuable about my grief experience, in terms of my relationships is Phil and I were pretty insular, we were very, we were busy with each other pretty much all the time. And I still continued to name team, my family connections and my friends, but we were pretty much each other’s one person. And after he died, of course, that was really, really painful and difficult. And I developed a lot of relationships in the aftermath of that, that become very important to me. And so in this new version of my life, my husband is a key person in my life and one of my best friends, but he is also a part of a collection of people who matter to me. And I’m really hyper aware of that, of maintaining all of the connections that fully up and recognizing everybody has a part to play. And so Valentine’s Day yesterday, I posted my nieces and nephews, my siblings, my mom, my dad, my friends, my work team, like I was posting all the pictures of all the people just to remind everyone that love is something that never dies. And because of that, the more love we have, the more opportunity we have to continue this loving connection with the world. Because we are loving more and more people. I love that
Victoria Volk 37:25
I actually posted about self love if you felt like Valentine’s Day was not bringing all the warm
Michele Neff Hernandez 37:31
fuzzies you if it’s chocolate and the bunnies.
Victoria Volk 37:34
Yeah, take all that love that has nowhere to go and and give it to yourself and for widows especially right.
Michele Neff Hernandez 37:41
And I think for Grievers in general, because like I’ve said, so often, we’re so hard on ourselves. And people have often asked me, What’s your best advice to give someone who’s newly bereaved. And I would say, Talk to yourself in the same way you’d talk to your best friend. Because we, we so often will hold ourselves to ridiculous standards and forget how difficult what we’re doing is and we wouldn’t ever say that to our best friend. If our best friend was living our exact circumstance, how would we care for that person, or for yourself that way. And so I love that idea of making sure that we’re and self was on my list of self love people for that reason, because if we can’t, and that all circles back to what I said in the beginning about this list of things that I was doing, and I still saw myself as less than because I hadn’t been able to look at myself and say, you’re valuable, just as you are. And this experience has not changed how valuable you are. It has changed your life circumstances, and you need to adapt something new. That doesn’t make you less than you used to be. And I can’t I mean, I honestly can’t count the number of times I’ve said that to people who are grieving because we want to somehow honor our person or honor the experience or stay connected by making sure that nothing has changed. And it’s just, it’s just a an impossible standard.
Victoria Volk 39:06
I often say that grief puts a veil over our faces, and we just we can’t see ourselves clearly. And you don’t see others clearly and creates this disconnect really within ourselves. And when we’re disconnected from ourselves, we truly can’t connect with others. And so I think part of seeking out community or why it might be difficult for so many to seek out community is because they feel so disconnected to themselves. And so I would suggest to that people start there, start with yourself really asking yourself, what is it that I need today? Or what is it that I’m trying to forget? Or what is it that I want for my life moving forward? What do I see for myself in the future?
Michele Neff Hernandez 39:49
I think that the other part of that that’s so difficult or creepers is that as you said because we can’t see ourselves and oftentimes that clouds the way we see our relationships with others. If it feels like there’s just nothing in the future, and we don’t know the answers to any of them splashes. And I think that’s the one of the key reasons for seeking community, even when we can’t see ourselves, even when we can’t see clearly other people because that helps with one of the things we lose when I personally love guys is that witness the witness to who we are the cheerleader, and recognizing that some relationships are not good. And maybe they wouldn’t have been those things. But there certainly is this witness that happens, we’re sharing life with people. And there are expectations around how we will interact with each other. And when that person dies, that whole dynamic shifts, and there’s no replacement. And so you find yourself swimming in the unknown, trying to figure out how to find your footing when, even when and maybe even especially when the relationship you’re in wasn’t good. There’s this flooding loss where you’re like, but now what? And so being able to be in community sort of helps you to if you look at someone else, that’s what happened for me, right? Like when someone else would come to me and say, I’m not as good as I used to be. And I’m telling them that yes, of course you absolutely are, then I’m hearing myself, say it someone else and thinking that can apply to you too. And so it’s helpful to see other people, sometimes we’re able to see what we’re feeling reflected in, and being able to see that helps us to kind of see through that veil. And I always tell people, it doesn’t matter if you don’t have answers, if you’re willing to keep asking questions, and even make those questions teeny tiny as possible. So what do I want more of in my life today? Well, I want more sleep. Okay, then that’s one thing you want more, that’s one need that you can see. Okay, so now your energy can be focused on that. And and then as you as you continue asking yourself that question, new thing will come up, I want more sunshine, I want more time to write, I want more love, I want more joy, I want more. But you know, we have to be willing to accept I want less pain, I want sleep. I want a break from this going swirling around in my head. Like sometimes the things that we want are, are not going to be the fluffy fun things, or even really forward looking exactly like we are taught to think of forward looking, what do you want your 510 15 year plan? If you can give yourself the smallest opportunity to answer the question would want a lot more of in this moment. What do I want more of in the next hour? Where do I want more of for this day? Sometimes that can be a good place to start and practice being able to answer questions that sometimes just feel unanswerable.
Victoria Volk 42:49
And overwhelming.
Michele Neff Hernandez 42:52
And annoying and and sometimes hurtful. Right? When my fence fell down in my back five months after Phil died, the fence blew down. And I’m looking outside my window into my neighbor’s window. And I’m like, Oh, my gosh. And so I’m thinking to myself, I need to get three estimates. So I started doing that one guy says to me, Do you want a five year 10 year or 15 year events? And all I wanted to do was take a little fence post and smack him with an arm with it because I did not want to eat I couldn’t. I couldn’t I don’t want to know why I’ve 1015 I mean, I can’t think about next week. Why asking me that question poor man. But you know, it’s that sense, right? Of? And then what do I feel like at the point of failure? I feel like I can’t even answer a simple question. Do you want to add 10 or 15? Your friends? That’s because be capable of thinking that far ahead. And so being able to just give ourselves grace around what? So what I wanted the answer to the question is I want the fence to go up today, which one of us could go up to date so that my dog doesn’t get in my neighbor’s yard and allowing ourselves that small thinking? Because we’re trained to think bigger. And when we are trained to think bigger, and we are unable to the story we often tell ourselves is that we can’t and that that’s terrible, but it’s natural. Of course. It’s so painful to be at this moment sometimes that I cannot even imagine the next five. And so what do I want more of? I want more relief. That’s okay. That’s a that’s a perfectly great answer.
Victoria Volk 44:23
What had Phil’s life taught you?
Michele Neff Hernandez 44:26
She was a person who did not live with regrets. And sometimes I found that very annoying. But I have learned what a gift is not to second guess all of the things that he he would make a choice and he would run with it. And if it didn’t work out the way he wanted it to. He didn’t regret making the choice. He just pivoted and it’s really been good for me, I think because I’m a perfectionist by nature. And so I don’t it’s been hard for me to make mistakes and allow myself the pen It’s a bit of a mistake. I always thought when I don’t know about that, I don’t know about the benefit of mistakes. But I’ve learned that there’s just so much that’s a gift in mistakes. If we allow it and he was just fine with it, he would go right on to the next without regret without beating himself up about it, for the most part, and I’ve really appreciated being able to, to allow mistakes and to and try to avoid that longing for perfection that is part of my nature.
Victoria Volk 45:30
And actually, it’s very fitting because this week in my newsletter, it’s I’m digging into the word regrets. Oh, great. And then I flipped it on its head because so often when we hear the word regret, we think of it in a negative connotation. We think the things that we didn’t do specifically Well, I do anyway. But that’s that’s usually the thing that comes to mind is what I don’t do. What if we thought about regret in terms of what do I regret starting? I’m sure you don’t regret study only starting to write a great starting your group of widowed women Bay. So if we flip regret on its head and think about it, what do I regret starting? Or what will I regret if I don’t start it?
Michele Neff Hernandez 46:12
Yeah, there you go.
Victoria Volk 46:13
You know that too?
Michele Neff Hernandez 46:16
For sure. Yeah. And you know what, you’re right. It is interesting how regret? Definitely. I mean, for me, anyway, such a negative connotation right away. And I think the other thing is, What won’t you regret? What things won’t you regret? And when we look back, especially for relationships, right, I don’t regret that even knowing that we would only have five years together. I don’t regret the choice to spend my life with. And so that’s another road for regret is the things that we value and would do again, even when their heart
Victoria Volk 46:49
What was your dad’s name? What is your dad’s name?
Michele Neff Hernandez 46:52
Not why dad’s name is Dan net. I am endlessly fortunate to be his daughter. He was the proudest Papa, you can imagine. And so in fact, he would often come to our events are called Camp widow, and therefore any person who’s widowed, so any gender any relationship type, married, not married, if out speaking, he would sit at the front, and he would tell the people on either side of him that curl up there, that’s my daughter. So he was not a good person himself. But he would be one of people in the bed friends also been a really Hello, in some ways, amazing, other ways challenging, emotionally challenging to watch my organization serve my mom. And for her to step into this space that I created as a widowed person, I guess intellectually, I always knew that that was the likelihood my dad has struggled with his health for more than a decade. It was always in my mind, of course, that that if you were to ask me who was going to die for us, the likelihood was always going to be him. And so it’s been incredible to witness my mom’s stepping into this space. And again, my parents are the people who told me about community. So she’s a natural community builder, and she is at home and community and she fits right in and is creating her own communities within the community. So it’s been a really heartwarming and also heartbreaking experience to witness her stepping into the widowed world. And partially a one that, you know, that I built for this purpose. And partially just understanding on a personal level, what it’s like to be changed by widowhood. And knowing that, on the one hand, there’s nothing I can do to, to change anything about pain that she’s living in. And I and I realized the value of it, I know that she will be changed in ways that are, are necessary for her, because my dad is dead. But it’s been really, I keep saying, I feel like I have a little bit of widowed PTSD, because every step that she’s taking into these things that I had to do myself is like stepping back into my young, widowed self and looking at this experience from her perspective, while also of course, seeing it from my own as a daughter. So it’s been a it’s been an intense couple of years, for sure. I imagine it’s brought you and your mother closer. Yeah, for sure, including the care experience, because we were all together. I mean, it was also interesting, because of COVID. We were only the siblings. So we all have partners who would have loved to be able to help but because of COVID We were trying, it was pretty early in COVID. So we were being testing and doing all of these things to make sure that we could be there. So we had to limit the number of people and so ended up being literally like our seven siblings. And then towards the end, a couple of grandkids would come and my daughter was able to be there for a good portion of the end of its life. So that was beautiful too. But when what worlds would you be back together in your adult as adults, sort of reliving your your childhood it was it was an interesting gift.
Victoria Volk 50:00
And I never really thought about that either. And that’s really kind of often what happens right at the end of life when you’re given if you can look at it like an opportunity and but again, not all relationships will allow that. And that’s the unfortunate thing. But it is possible to have a good death. It is possible that I will my end of life doula training really opened my eyes to that with a bat.
Michele Neff Hernandez 50:23
So my mom is a birthing doula. So yeah, and so it’s also just all those lessons of birth and time because birthing doula is also deal with that, when births are don’t go the way people hoped they would. And so, so much of what she leaned on while taking we would, we would call it mom’s do Lane dad, because we could do so much. But there were times when it was only her that he wanted. And so we’d be like, mom, dad need to do it. And it would, it wouldn’t need to be her in that moment. But there was a beautiful, like she said, I think the thing is that for our culture, that we are because of our fear of death, and because of our desire rate for perfection, and for us not to be changed, like all of these roadblocks that we put up for ourselves, we make it difficult for us to embrace the reality that can happen. Because death itself, you know, in our culture is often the enemy. And so we don’t want death. And because we don’t want death, then nothing about it can be good. But the reality is he couldn’t have. I mean, it was hard, really hard, but beautiful. And, and we gave we weren’t able and fortunate as we were to be able to give him what he wanted. And to juxtapose that with what I knew about other people who had had a loved one die from COVID. It just really just like I said, drove home how fortunate we were and how grateful I was for his death experience. And one of my brothers, they said something about looking back, because we’re now approaching a year anniversary. So all of us are kind of remembering where were we this time last year, and I said something to my brother about it’d been a hard day or something. And he said, I look back on that time. And I think it’s one of the best times in my life, that we could be together that we could be in service to dad, that mom had the support that she needed to be a caregiver, but not have to do it all on her own. He was like I I just look back at that time. And Bill. Yep, so grateful. And we’ve said many times, that’s not I don’t put that out to pretend that that’s what everyone is fortunate enough to build. But I do think that we more often than we than we can see have the chance to make death, a beautiful experience, when we allow ourselves to see it not as the enemy will true.
Victoria Volk 52:56
Again, it comes back to the different layers, so many layers of grief, when you can have seven siblings growing up in the same household and every single sibling is going to have a different recollection and perception and experience of growing up in that home. And that’s that adds a real different dynamic at end of life for sure.
Michele Neff Hernandez 53:18
I think it’s also worth saying out loud that it’s not because it was beautiful, doesn’t make the grief easy. Exactly. So I mean, that’s the other piece right is we can welcome a beautiful bath. And we can live and I can feel endlessly grateful for this particular part. And that does not make what comes after it easier. And I think that was another piece of my personal understanding of what we were doing was that I knew that we could make choices that would make his death easier, and that we could come together in this way. And also that it wasn’t going to change anything about how party was great. And that we were all gonna have to do that work. And we are definitely eight different people doing it in eight different ways. And each of us living that each of us watching my mom witnessing and as you said, I am witnessing it from my load perspective. My siblings are witnessing it from their perspective of their mother. And while I also have that, of course, that I have this other layer and so a lot of times I’ll say we can’t we can’t do that for can’t take this from her. It’s impossible. I know. It’s hard to watch her BMP. I know it’s hard to watch. Knowing Valentine’s Day is a perfect example knowing that last year Valentine’s Day, we created this whole league Valentine’s Day scene and left them and everybody went home for the night came back and so of course she’s Of course she’s missing him and there’s nothing you can do about it except for tell her we love her and be available if she wants to talk. And so it’s been an interesting role for me to play because I uniquely know that I know that there’s nothing they could have done on the first Valentine’s Day to make it easier. I’m except keep loving me If I had to make my way through, so no we not for people, we don’t imply that a good death makes the grief easier, a good death just that that passage between life and death can be smoothed by a willingness to allow the love and the conversations and and also to let people just be who they are. No one’s going to change in their last five minutes before they die. And so being able to recognize that relationships may be what they are, it doesn’t necessarily negate the opportunity for a good death.
Victoria Volk 55:36
Yeah, I agree about 100%. There’s no half grievers.
Michele Neff Hernandez 55:40
that’s true situation is true. Try as you might agree with 50%, it will not work.
Victoria Volk 55:45
So what is I mean, you’ve given so many tips and things throughout our conversation, but what gives you the most joy and hope for your future?
Michele Neff Hernandez 56:01
Well, I would answer that in two ways. One of the things that brings me so much joy is the privilege of witnessing the evolution of my widowed population, like when I meet a widowed person who has just been widowed, and then get the opportunity to be a part of their lives for five or six or eight years, and be able to witness where they are eight years later. It’s an incredible gift. There’s nothing like it. And the fact that they can look back on their experience and say, that being a part of this widowed community continues to be a blessing to them is, is the whole purpose of my work. And so I feel very fulfilled in that way. And then on a personal level, one of the things that Phil’s death taught me just in such an a deep way was that the time we spend matters, and being able to make space for things that might not seem that important to the moments if one of them for example, if one of my kids calls, I turned my phone off today, because if one of my kids calls I’m always going to answer like, I’m always tend to dance, like look at the phone. But you know, of course, that seems like something that people would always do. But you know, my nieces and nephews, I don’t really special relationship with them. And I look to Phil’s death, as the beginning of that, because it was like, okay, you know what, my 11 year old niece does not care if I have a big organization for whatever people, if that means that I can’t come to the recital, or the I can’t make time to talk about her latest book, or that I can’t spend time I have 10 nieces and nephews who are between the ages right now. But will this one just turn 1414 and eight years old. And they’re my little buddies. And, and I honestly believe that that’s because Phil’s death taught me like, you only get to do this one time for real. And if you want to leave a legacy, that legacy can be build one phone call to someone you love at a time. It doesn’t have to be bigger than that. And so I’m always filled up by taking those times, even last night, Valentine’s Day dinner, you don’t take that for granted anymore. And those those moments are ones that build a legacy of making time for the people I love. And I’m super grateful for that lesson, because it’s changed the way I’d spend my time.
Victoria Volk 58:35
Has it changed your camps that you nurture and bring together for widows? How have they changed over the years?
Michele Neff Hernandez 58:44
Where they are always in? Yeah, I think the thing, the most thing, particular about my own grief, I’m in a different different space now. Right from I started this journey, having nothing to do with nonprofit knowing nothing about what I was doing. And now we’re going to nonprofit professional for 14 years. And that experience alone rate has shifted some of how we do what we do. But I think the key thing about my own experience is that we make sure that people don’t feel like they have to outgrow our programs. And by that I mean if we go back to that example of someone who’s newly widowed, let’s say five years into their experience, they have a new person in their life. And if they’ve disconnected from their widowed community, that learning how to love somebody, again, and finding a balance between the lobby pad for your person who died and the love you have for the person who’s alive and how you especially because if you marry them, then husband or wife is the same word, right? Like I have another husband and so how do you how do you balance that? If you’ve lost connection with your community, who else is going to answer those questions for you? The people that you need are the people living that experience and that isn’t ongoing. We talked about my daughter’s wedding like now Knowing that there are other widowed people who’ve made their way through weddings, what did they do to honor that person? I mean, I had this deep reservoir of experiences and people and connections that will serve me for the rest of my life. And I know that that’s true for them, too. And so what I have learned is that I’m going to need my widow community forever, because they are a part of my witness, they are part of my evolution, they are part of each other’s evolution. And so we build programs that people don’t have to outgrow. And that doesn’t mean that you stay stuck in your brain. That doesn’t mean that you’re not moving through the natural ebb and flow of life. In fact, it supports the natural ebb and flow of life by having an ongoing community who has witnessed the depth of your grief has walked with you through the healing process, and has come to be the people you rely on when secondary losses come up. When a new experience comes into your life that requires you to kind of dig into that grief again and figure out how does the grief play into what I’m living right now. So the biggest message for me has been building a community. That’s a lifelong community of friends. And I’m super, super grateful for that.
Victoria Volk 1:01:15
So what happens if someone comes to experience camp widowhood? Like what what happens,
Michele Neff Hernandez 1:01:22
but I always tell people about the blend of the conference and retreat and or high school reunion. Because our programs 40 40% of every program is returned campers. And so those return campers are coming. Why? Because they’re coming to this event to experience new information for where they are in their grief process right now, one, and oftentimes to come back to visit their friends and reconnect with the people who, like I said, have witnessed the depth of their grief, they just become such good touch points for each other. So when you would come to camp widow, there are a selection of workshops that are all designed to address where you are in your way of life. So we call newly widowed to be a year or less recently widowed to be one year to three years middle widowed, which is kind of like the growing years of three to five years where this life is you’re starting to put it together. You’re you’ve lived it for a little while, but then often the question comes, but what do I want? What do I want more of, and that can be more of a long term conversation or a long term thought process, and then seasoned whatever we call five years and more. Those are people who have been living or widowed life who have oftentimes, re partnered have changed childhoods have done a lot of different things to to adapt to the death of the person that they grieve. And so all we we plan workshops to address every one of those areas. And so when you come to camp, you have the opportunity to interact and workshop you have entered the opportunity to interact in this group of people. So we divide people into workshops, where all of our newly wounded people are together, all of each of those other groups are together so that they can address the things that are unique to that experience. And then their social activities, people. Prior to COVID, we had a huge dance floor. So we’re sort of adapting to what this next this next version of Camp looks like. But people would often say to me, one year we had a ballroom and they said, Well, I mean, we could add larger dancer, but I can’t imagine that that would be what you would need. I was like, Oh yeah, double the dance floor. Because you can be with people who understand that dancing, and smiling and laughing doesn’t mean you’re over it. It just means that for this moment, you’re allowing the lightness of being with people who have made you feel free for a minute to be the primary experience you’re having at the time. And so our dance floor typically is a rocking dance floor of people who are so grateful for the relief of movement and music and camaraderie that speaks to a life affirming board. So that’s that’s the template experience in a nutshell. And it lasts from Friday to Sunday. So we start first thing in the morning on Friday, and we go all the way through midday on Sunday. And then those connections that people make, they tend to make lifelong friends. We have many people who have with one particular group of whatever people who met at their first Kimbo they all were together, I think it’s probably been seven years, they’ve had that same tech stream for seven years. So they continue to be the people who something great happens. I tell my seven my text stream something horrible is happening. I tell my extreme I need a little bit of support. I’m missing my person for some unique reason or I’m missing my person just because I miss my person that all of that can go into that space and imagine the power of that. If you have that for a year upon year upon year and each one of them has gone through their own evolution of the variety of things and they celebrate it together. Where is this located? We have four different location one is in Tampa. That one’s coming up in March, March is Tampa, Florida. July is Cindy in California, August will be Brisbane, Australia and November will be Ontario, Canada. And then we’ll have one, and we call them pop up camps. So pop up camp is just a one day camp where we kind of coalesce as much of the three days into one as we can. And this allows us to kind of move around the country a little bit, we’ll had one of those in Denver, Colorado.
Victoria Volk 1:05:25
It’s amazing. Do you see it’s new this this coming year for it?
Michele Neff Hernandez 1:05:32
The popups are relatively new, we started them before pandemic, having the opportunity to move around a little bit is going to be in for us. At our Australia camp is also a new camp. We’ve only done it once before we partner with another organization in Australia. And it’s been an incredible thing to watch what I imagined in and did the first time with my whole family as volunteers because they didn’t have any volunteers, they’ll also be working in a different country is really incredible. We’ve got a great partnership in Toronto, we just incorporated actually. So sorting spirits, Canada, is the organization that runs the Toronto event, it’s just been kind of amazing to watch it grow. And we’re very focused on making sure that we continue to provide quality programming we’ve had, as you can imagine an increase in demand, in part because of pandemic in part because of the CNN Heroes exposure. And so there’s been kind of a lot of people coming in. So we’re we’re really focused on making sure we take care of you.
Victoria Volk 1:06:30
And your book, are you on a book tour this year?
Michele Neff Hernandez 1:06:32
And my book, I am on a book tour this year, I actually have it doesn’t the first time I button, hold it up so that people can can see and see it in my hand. So yeah, I’m really excited about the book, the book tour will be from March to November, I’ll be touring all over the US, Australia and Canada as well. And, of course, including books at Campo. And it’s it’s such a full circle place I started initially, I thought I would write a book. And what I used to tell people was the book that I thought I would write in my first year of would have became a community. And it was really clear that I was really supposed to just focus on the community. And I, I really thought that meant just the book would come or it wouldn’t, and I didn’t worry about it too much. But then over the years, learning more and more about how I could bring to grieving people and anyone who has experienced a traumatic events, to help with some just practical steps towards rediscovering yourself and allowing yourself to be broken so that their space for healing. And so that’s really what the book is focused on. Of course, it’s not a book I could possibly have written a year into my widowhood. So I feel like the timing is is as it was always supposed to be. And I’m eager to get the message of the book into people who are struggling to accept this new version of themselves, because I see such potential there. And I really wish for people to be able to give themselves the kind of grace they would give to someone they love. So that’s, that’s the hope of the book to get that message out stance.
Victoria Volk 1:08:10
That’s my hope with this podcast to the people
Michele Neff Hernandez 1:08:13
That weren’t a perfect pairing,
Victoria Volk 1:08:16
Can see that there is another side? Yeah, allow yourself to get there.
Michele Neff Hernandez 1:08:21
Yeah, and be kind in the process.
Victoria Volk 1:08:24
And I feel like those really sad associations for yourself?
Michele Neff Hernandez 1:08:27
Yeah, and the thing is that we are, it’s so easy to fall into the trap of negative self talk. And you’ll hear a lot about that. And when people are struggling with self esteem, what we sometimes don’t translate is that reef consistently has an impact on self esteem. And so with that negative self talk takes a totally different tone. When you’re just saying too tired, I’m lazy, I can’t get off the couch, and it doesn’t acknowledge how much of your body, heart, mind, spirit are all involved in trying to figure out how to reconstruct your life without this criminal, this person living, to be able to address that negative self talk and to be able to say, be kind to yourself, like that’s the biggest that’s the biggest message for every griever be kind to yourself be kind as kind to yourself as possible.
Victoria Volk 1:09:24
I just had a thought too. And in especially in I think well again, depending on your background and in how you were raised and things like that. But when we put so much of our if we look so much at someone else right? To fill, what it is within us that we never filled ourselves and then that person is gone. That’s it deconstructs everything we thought everything and about ourselves and about my worthiness and everything. And so I think that’s would you agree that that’s why partly it’s so difficult because you really, it’s almost a reconstruction of yourself, knowing who you were before you put so much of of yourself into this other person? Well,
Michele Neff Hernandez 1:10:11
I think I absolutely agree, first of all, but I think it’s even, it’s even more complicated in that one of the things that I wrote about was, how surprised I was that my sense of self was shattered by my husband’s death, because remembering I had been divorced. And so in my first marriage, I was very young. And we were growing up together and having three babies. And so we were at when we divorced, I was like, I need to be independent, and on my own. And one of the things that was struggled for Phil and I was my, like, Uber independence, like I was super independent, I was not no interdependence, none. And so we struggled to find a balance there. And so the last thing I thought, what happened when he died, like I was so independent, how in the world did my entire self image shatter when he died? And I think it’s because we see ourselves in the world that I think this is true for every creeper in and as you said, particularly true when the person who died is your partner, is that we live in a world where they’re alive. And we are a person in that world when they’re alive. And when they die, we have to ask ourselves, who am I in his world now that they’re dead? And that is a question every guru has to answer. Right? And so I think often about the experience of the death of a child, who am I as a mother, when my child died? Right, so that we have we have to answer, we have to be willing to ask those questions in order and not assume that because we need to ask the question, there’s something wrong with us, right? Because that’s a natural part of living in relationship is we impact each other. And whether or not we want to recognize our interdependence, there is an interdependence, that is a natural part of having someone be a part of your life. And the more the larger the part of the life that they have, the more difficult it is to redefine yourself after they die. And so again, those those that redefinition, it may seem similar. It’s just that you have to be willing to ask question, I was shocked that I could not believe that my sense itself was impacted. I would have never believed you. If you had told me that before he died, I would be like, well, I know that I’ll grieve. I would tell I’d be terribly sad. But I know who I am. After he died, I was like, Oh, am I like this? It’s a disaster. I felt like it was a disaster. But what I didn’t know is that it’s totally normal. Of course, of course you do. And so normalizing that experience, I think it’s so important, because then we get to just ask the question. So is it the right time for me to run a marathon? Or isn’t it? That’s not a judgment call? That’s not a my a good person. That’s just, I am now living in a different situation. Does this new version of me need this? And the answer might have been Yes. Maybe I didn’t need it. In this case, it was no. And there’s so many other things that we do that we asked our jobs. So many people when they’ve had a deep grief experience, look around them and think I don’t care about this anymore. Hobbies, where we go to eat, what our room looks like, if we had the same house, all of these can be up for question, which for some people that will be uncomfortable. For other people, it will be freeing partly depends on our life experience. But whether or not it’s freeing or terrifying, still, asking questions allows us to consider if something different might serve this person we are today better. It’s all normal and natural. Totally normal. And and it’s just so sad that it’s unexpected. Because it feels it felt to me like a punishment. I felt like I was being punished. If I did all that work to learn who I was, Are you telling me I have to do that.
I was just so surprised by it. And also just depressed by it. I didn’t want to do it again. And so, but what I discovered through the process of it was that it allowed me to create a life that better fit who I am. Until you can recognize that there are differences. You don’t know how to build something for the person you are in order to build something valuable for who you are now have to be able to look at the things that have changed, grieve what you’ve lost, acknowledge that you’re different grieve what you’ve lost. And then you can start kind of asking questions. What do I like? What do I not like and and then begin building from there. So it’s insightful. Your comment is so insightful in that it is the Forget when it’s a partner. But I think it’s also so much a part of any grief experience. And it’s unexpected in many ways, because we think we know who we are. And we do well, to the extent that we do, right. But you could say we do in the situation that we are in, but when the situation changes, it’s worth asking, what about me has changed as the situation has shifted?
Victoria Volk 1:15:27
So good, so good. Is there anything else that you would like to share?
Michele Neff Hernandez 1:15:31
I do really want to just point out that the book, while it is the foundation of it, of course, this grief is really intended for anyone who’s lived through something traumatic, because the the traumatic experiences we live, you mentioned a toxic relationship that had had been traumatic those changes, too. And if we can allow ourselves to kind of consider how we’ve been changed and integrate what we know about ourselves now, it’s so valuable for us as we shape our future, and utilize those tools in our present to create something that matters. And so the book, it does have a foundation of grief. But it was intended always for anybody who’s lived through a traumatic experience and then feel like we all had through pandemic then impacted in in unique ways for everything from a person died during a pandemic. And of course, the biggest possible shift all the way down to I decided I really actually love working from home, I never want to go back. So we’ve been shifting all of us and they’re in the array of, of conversation in between. They think it’s, it’s something if we can acknowledge that we’ve been changed, and we don’t make getting back to normal the goal, then we’re better able to craft us what’s happened to craft something valuable. So my hope is that people will be able to see not only, even if what they come to the book for is a grief experience, they see not only that great experience, but the other experiences in their lives and be able to begin to integrate some of what they’ve learned through that to be able to craft a really mean like today.
Victoria Volk 1:17:08
Is an invitation to pivot
Michele Neff Hernandez 1:17:10
Definitely is an invitation to connect that’s perfectly said.
Victoria Volk 1:17:14
Where can people reach you if you’d like to connect, learn more.
Michele Neff Hernandez 1:17:18
Love for them to join me on my website. It’s Michelle, I spell that with one L thanks to my mother. So Michelle Neff, Hernandez with a z.com. And you can find information for sworn spirits there. It’s for saying soaring spirits dot o RG. So it’s soaring and spirits as a plural dot o RG, you’ll find all the soaring spirits programming there. And then like I said, You can reach me on my website, the book is there. So you’ll have links to purchase a book if you’d like to do that, and can also contact me there.
Victoria Volk 1:17:47
And I will put all the links in the show notes. Awesome. Appreciate it. And thank you so much for your time. I know you’re in the midst of an exciting time and you’re feeling great. Yeah, it was this has been a treat. So thank you so much.
Michele Neff Hernandez 1:18:03
I appreciate being invited. And I love what you’re doing. And so these ongoing conversations, I feel like this is the way that people have the opportunity to understand that they can be changed is by hearing exactly this. And I should also say listening to a podcast Community Councils community to that doesn’t have to necessarily be a one on one interaction. So in whatever ways you can expand your circle. Those are the ways that you get to access those kinds of cones that we talked about on the road.
Victoria Volk 1:18:32
So thank you. And remember, when you unleash your heart, you unleash your life. Much love. From my heart to yours. Thank you for listening. If you liked this episode, please share it because sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting know that what you’re feeling is normal and natural. Much love my friend.
Cancer, Grieving Voices Guest, Grieving Voices Podcast, Podcast |
David Richman | Wake Up Call
SHOW NOTES SUMMARY
What does it take to bicycle 4700 miles, with temps most often over 100 degrees and the wind against you?
David Richman did just that as part of a passion project that later became his book, Cycle of Lives, where all proceeds benefit cancer-focused charities.
However, David didn’t wake up one day and decide to make Cycle of Lives his mission. Instead, it was years in the making, following the death of his dear sister, June, due to brain cancer.
David’s sister’s diagnosis was the icing on the cake of what he was already struggling with in his life. One question he asked himself would set him on a path of personal transformation.
Listen to David’s story of transformation and what has inspired him throughout his life. Hear some of the stories that have most inspired him and some golden nuggets he’s picked up along the way.
Be sure to listen to this one all the way through! This episode is the perfect inspiration for the start of 2022!
RESOURCES:
CONNECT:
Victoria Volk 00:56
Thank you for tuning in to grieving voices. today. My guest is David Richman. He is an author, public speaker, philanthropist and endurance athlete who, whose mission is to form more meaningful human connections through storytelling. In his first book, winning the middle of the pack, he discussed how to get more out of ourselves than ever imagined. With cycle of lives. David shares the interconnected stories of people overcoming trauma and delves deeply into their emotional journeys within with cancer. He continues to do Ironman triathlons and a wide range of endurance athletic events. Having recently completed a solo 4700-mile bike ride. He is married and lives in Southern Nevada and has twins who are in college. Thank you so much for being here.
David Richman 01:47
Thank you, Victoria. I’m looking forward to talking to you.
Victoria Volk 01:50
Yeah, I actually saw a little fun fact. I looked up really like where would 4700 miles, where could that get me? But from Kansas. If you flew from Kansas 4700 miles, you get to Belgium. Kansas to Belgium is 4700 miles.
David Richman 02:10
That’s a lot of miles. It also gets you from LA to San Diego, across Arizona, to Albuquerque, down to Dallas and then Austin and then back up to Houston. Through the panhandle of Florida down to Tampa, over to Orlando. And then up to New York City. That’s 4700 miles.
Victoria Volk 02:40
Wow. Yeah. Wow. I’ve seen bikers like coming through. I’m in North Dakota, they come through and it’s like 85 degrees and they’re biking up going on like I just about anybody who can first of all, I think it’s hard enough running but biking up a hill? I don’t know.
David Richman 03:01
Yeah, it was tough in you know, the first 12 days. The high was never below 100. It was a rough start.
Victoria Volk 03:13
How do you do it? I mean, I know we’ll get there like in this conversation, but like just the mental fortitude that that takes?
David Richman 03:21
Yeah, that one. That one was tough. I think the toughest thing about the bike ride really like physically the toughest thing was, it was it was shocking how and I’m not even exaggerating, Victoria, it was shocking how no matter what direction I went, the wind was in my face. It was it was maddening. I had one day, one day outside of Albuquerque. So, from Albuquerque to wherever I went that day where the wind was behind me. And it was my shortest day by four hours on the bike in the entire 45 days. I don’t think I ever had a day where the wind wasn’t in my face. It was maddening. Maddening.
Victoria Volk 04:02
What an incredible feat. I mean, you could probably just did you document that journey?
David Richman 04:07
So I did. So, the book is written first person from each of the 15 participants. So, I I interviewed them got their stories, and I wrote their story. First Person has them. Okay, or third person has them. But still it was there was their perspective. In between each of those stories is a short little narrative that talks about the bike ride my feelings about the person that whose story just ended or the person whose story was coming. And then you know, some of the people I met along the way and my own dealing with the grief of losing my sister to cancer. So, it’s a it’s a narrative that kind of binds those stories together.
Victoria Volk 04:55
How did this come to fruition? This mission to 4700-mile bike ride?
David Richman 05:02
Well, so the bike ride was kind of a little bit of an afterthought. What I what I wanted to do was, so my sister had been diagnosed with terminal brain cancer. Okay, so she had a young family, job, friends, the whole thing, very vibrant woman, you know, living her fullest life. And she was faced with this reality. And her and I talked about things a lot, maybe not every aspect of of what was going to happen, but pretty much we talked a lot. And I did a Relay for Life near the end of her actually, a couple of days after she passed away, I did a Relay for Life, which is a 24 hour, you know, then I did the whole 24 hours. And I noticed that that people did not openly communicate about the emotional side of their trauma. They were able to talk about like, the tasks, when am I gonna get my next PET scan? How do I navigate work? What’s the best way to reduce stress? What’s about the tasks around their their cancer, very, a lot of opinions very open to talk about what when it came to the emotions, they just weren’t. And that kind of set a seed for me. I was kind of just shocked by that. And then every year her name was June, every year I did a for June in June, in terms of it, where I’d raised money for the cancer center that took care of her. And I noticed that same recurring theme, where people just weren’t able to talk about the emotional side of it. And I thought, hmm, what if I got a group of really diverse people who had varying bouts with cancer, or came from the perspective of a caregiver or a doctor or survivor, loved one, whatever. And they were young, all different types of cancer, different emotional experiences, different sets of childhood traumas, all these wild lead diverse factors. I figured, if I covered as much of the general population as possible, then maybe we could start to understand how to start those conversations, like how like, what are people going through? What have they gone through? And how can we better relate to them so that we can talk about these things that people don’t talk about the emotional side of it? So a long answer to your question, but how did the bike ride happened was I thought if we’re connected by story, which I think we are, right, you know, you’re you’re telling stories all the time, people that you have honored telling stories were connected by stories, and were connected by emotions, what better way to connect these things than to get on a bike and go visit the people that I had talked to for a couple of years, but never had never met most of them. And so I thought it would be a good experience to connect that and along the way, I’m trying to see whether or not this thought of people are not equipped to talk about the emotional side of trauma and grief and other things. And every single day Victoria, I that that was reinforced that, you know that this was, even if it doesn’t change the world, maybe it’ll equip a few people to better understand how to start these hard conversations about the emotional side.
Victoria Volk 08:27
That’s beautiful. It’s a beautiful concept. I love the store. I love it. Because obviously what I do is try to pull out the emotion of people’s experiences. And as a grief recovery specialist, I can tell you it is really difficult to to help people to see that going there is healing. It really is.
David Richman 08:52
It totally is. And you know, it’s understandable why people don’t talk like I’ve learned that through this journey. Because they don’t want to say something stupid, they don’t want to guilt others they don’t want to, like, my life is great. I’m talking about your life, which sucks, and I don’t want to make you feel bad. I don’t want to feel guilty about how good I feel and how great things are for me. Right? Or people they don’t want sympathy. I mean, there’s a lot of reasons why you kind of clam up about these things. But I mean, honestly, it’s just shocking to me how many people I mean, it’s endless, endless people said to me, oh my gosh, I wish I knew what to say or you know I I never really talked to my daughter about this because of XYZ reason. I sure wish I knew how or I sure knew wish where I could start doing that. And and that’s what I think these stories do is they shed light on this kind of block that we have about talking about this or dealing even dealing with the emotional side of it. And I think, you know, like, for example, like I just recently just got a note from, from a doctor who retired, forget what kind of oncologist oncologist he was. But he said, When I read your book, the first thing I did was go read it and horror, thinking, oh my gosh, I was not a good enough doctor, I didn’t know my patients the way I should have. He says, My let go that thought I read it the second time thinking about how interesting these people were. And I thought to myself, how cool is that? You know, I’ve gotten plenty of notes from people saying how now I understand, or I better understand or this makes me be able to talk to so and so. And jeez, if I’ve only affected if the few people that have sent me these kinds of notes, how great is that?
Victoria Volk 10:50
Yeah. Can you give an example from your book? One of the story?
David Richman 10:54
Yes, I’ll give you one of my favorite examples. So, I think that we can all put ourselves in the position of how difficult it might be as a patient. But how about how difficult it may be as an oncologist to deal with patients. And so I interviewed a woman who was absolutely spectacular, she’d been a oncologist specializing in female and male breast cancer for nearly 40 years at NYU. And wow, what a great story she had. And the reason that she was open to talking to me was because she had come to realization, having lived a long, successful life, and having given so much to the community, and we’re so passionate about wellness and survivorship. Had a successful marriage had raised a daughter who’s grown up and gone off to her own career, she had realized that when she started out as an oncologist, Victoria, she kind of was just super focused on treatment, and care and do things this way, or whatever. And if people didn’t really bond with her, listen to her, she just kind of moved on to the next patients. But after 40 years, she realized she was really good at what she did. And it and if people weren’t willing to take her medical advice, she wasn’t willing to, to help them. Because she knew that she was a very good doctor. And she knew that which that her regimen of, of of care, could enhance their lives, perhaps prevent acceleration of their cancer, maybe even save their life. And she knew if they didn’t listen to her, what they might potentially missed out on because she was at a point in her life where she was grateful for so much. And so her dilemma was, how do I walk out of one patient room where somebody wants to not take my advice, and I know if they take my advice, it will help them. And if they don’t take my advice, it could potentially be disastrous? How do I walk out of that room and into the next room, where there’s a woman with two little kids on our labs, and I’ve got to tell her that she’s gonna die. Right, that there’s nothing I can do for her the other woman, I could have done something she won’t listen to me this woman, and just how emotionally difficult that was. And then we talked about that issue, around the backdrop of not only being a woman oncologist at a time when women are not becoming doctors, it searches that oncologist and the discrimination that she faced and how she overcame that. But also the fact that, you know, you look at a doctor and think everything’s wonderful. But we find out that when she was 12, she came home one day, and her dad just never came home. Like he abandoned the family. And how she was able to go through her life and fix that part of her, or at least reconcile that part of her enough to live a life where she could be loved and where she could love somebody else without this fear of abandonment. And so I thought to myself, after talking to her, You know what, maybe she is much more in tune with being a good provider. But maybe perhaps when somebody comes in and a doctor is not as friendly or not as open or is maybe a little more distant, maybe they’re going through their own stuff. Maybe when the doctor comes in, if we could take one second and ask how are you doing? Maybe that doctor just walked out of a room where somebody wouldn’t listen to them. And they’re so upset about the fact that that they want to help this person and they won’t take it. Then they walk into our room. Carrying that into here, maybe maybe they just need a minute of attention. So those are the kinds of things stories that I think maybe will, will open up people’s minds to think about how we might better communicate with those around us.
Victoria Volk 15:08
Thank you for sharing that, because, to be honest, I had never considered that side of it. Thinking of what that might be like for an oncologist. Right? And I’ve thought about certain different careers, you know, social workers, you know, going into homes where they have to take the children away, or you know, things like that. But I’ve never thought of the ecologist. And even just me with this podcast, I’m sure people that you’ve talked to, it’s like, wow, that sounds depressing. Like, the work. You know, the work that I’m doing in grief, recovering stuff, like people will say, Well, that sounds really depressing, right? But I imagined burn ecologist it really is, but it can also be equally rewarding too.
David Richman 15:57
Yeah, but I couldn’t, I couldn’t imagine I could, before I did this project, I couldn’t imagine I didn’t even let it enter my realm. Like, how in the world? Could somebody be an oncologist? How could somebody deal with this kind of heaviness? I just didn’t even let it into my realm. And then when I did let it in my realm, I’m just like, God, there’s no way I could ever do that. Are you kidding me? To give bad news to receive, you know, to to watch what I mean, God, it takes a special person to be able to do that. And so I think that I have maybe just another level of respect, admiration, empathy, for people that that deal with this heavy, heavy stuff. There’s another one up, gosh, Jen, she was me her story is absolutely amazing. Like, is one of the most heart warming, but also tragic situations ever. She watched her dad die of cancer when she was six years old. And I’m going to condense the story really short, she grew up to be this super happy, lighthearted, wonderful, joyful, life is great kind of person. It’s because her mom and her sister in the end kind of really huddled into this loss and to the closeness and just, she just lived in a very safe loving environment, even though she lost her, her dad. And her dad called her nurse Jen, because during hospice, she would bring him like a soda or something, or whatever. And she kind of remember that she ends up going to nursing school. And the last thing she would ever do was was it would end up in an oncology unit, especially a pediatric oncology unit. But she’s got to do a rotation. And she does a rotation, she comes home, bawling her eyes out, calls her mom. And it’s like, I just did the pediatric oncology rotation, and a mom goes, it’ll be okay. And Jen goes, how would I ever not do that? Like I have to, because that’s what I have to do. So she does that long, long story, again, to the question of how she deals with the pain of it is because every once in a while I go home, and I have a cat day, I just pet my cat. Because if I let myself think about all of the heaviness, and all of the craziness that I deal with, it would really really bring me down, she goes, I just sometimes just need to check out and pet my cat. Because otherwise, it’s just too heavy. And I just go golly, I couldn’t handle one day of that she’s doing it for her whole life, she’s planning on doing it for her whole life. Like it just takes a special kind of person. So, I think that we oftentimes want to just go I don’t know how you could go through that as a person with cancer or dealing with some other type of trauma. But the people like you, the professionals that give care and attention to the people that are going through these things, wow, man, that is another level.
Victoria Volk 18:56
To that point, kind of a commercial anyway, in my local commercial in our state, where they talk about the mental health of doctors and nurses and you know, stuff like that because as you said, like they’re every day they’re in this environment of great loss and sadness and, and there’s great stories of overcoming to but to not be able to bring that home and but they’re just like the rest of us just as equally have the potential to fall victim to addiction and alcohol use and you know, so I can’t recall the statistic right now, but it was actually quite high of how many doctors commit suicide. So just wanted to support that point you made and that the emotional health and well being of physicians and caregivers and caretakers. I actually just had a thought I was just pulling weeds in my garden last night and I just thought you know sometimes the Helper needs help too.
David Richman 20:03
Yeah. It’s, it’s, it’s really tough. So, so not only the caregiver professional, but also the survivor, the one going through the cancer, just what is their experience. And so, what I, what I, what I did Victoria, as I said, we all kind of have the same emotional responses to trauma, maybe we don’t explore those emotions, but we have the same emotional experience, right? Like, for example, if you were stuck in a cave, and a big black bear came in to attack you, you would be fearful. And there’s not anybody that wouldn’t be fearful. Now, if we were to survive, that, we might, or might not be able to talk about it, or reconcile it, or share it with others or whatever. But we would have all experienced that fear. So what I tried to do was to say, with each story, point A is when they encounter cancer, you know, Jenna’s the six year old, Dr. Meyers, as a 14 year old or however old, she was 13 years old, eighth grade trip to the hospital, where she was just like, Oh, my God, I’m going to become a doctor. So point A is then or is patient when you’re diagnosed with cancer? Point B is today? How did the emotional journey from point A to point B happen? Or not happen? What you know, how were you able to or not able to deal with the emotional side in relation to the traumas that happen prior to point A, so an example would be Patricia story. And Patricia stories, her cancer journey is just ridiculous to trap it try to wrap your brain around. But she had five different cancers over 35-year period. Could you imagine five different cancers. So basically, she was at the point where she was just like, Whatever, whatever it is, just cut it out. There was really nothing left to cut out and also took care of why she was going through chemo took care of her dad who was dying of prostate, I believe prostate cancer, I don’t remember which one, but just in working in survivorship community, and the whole thing like her whole life has been fixated on dealing with her cancer, or helping others better navigate their own cancer journeys. But her story, really Victoria is about that, in relation to the four years that she was basically kept prisoner in a very, very abusive, mentally, physically and emotionally abusive relationship. She gets out of that, and you go, well, how could anybody ever survive that, let alone be open to finding love? And trusting somebody, let alone be able to now start a fight for 30 for the upcoming 35 years of dealing with cancer. And so I think what we can take from that is how strong you could be is just what did you already survive? Right? Because I first thing that I think of, and I think it’s pretty normal to think and most people would think of five times cancer for 35 years, there’s no way I could have dealt with that. Doing no way possible. And that’s where people go like, I can’t even imagine like, how who does that who survives 35 years of five different kinds of cancers. And then, if you lit put it into perspective of look at what you survived before that, who hasn’t survived trauma, who hasn’t overcome difficulty, maybe not to that extent. But yeah, maybe you gathered the tools that you need, and you’ve drawn them to deal with whatever you need to deal with. And so when she says in this has kind of given away the punch line, but when she says that, you know, I might not gotten very far out of bed. But every single day, my goal was to get about a bed, and I did even if I only took one step. But my goal was to get out of bed every day that I can understand how important that is. And that was one thing that she was able to draw on to keep herself going every single day. And I go, Well, if somebody said that to me originally, like, I go, how did you deal with your cancer and the guy just got out of bed every day. It wouldn’t make sense to me sound little trite. But in relation to her story, and what she overcame and what it takes to get out of bed every single day, to try it out with optimism and strength, go about your day and fight whatever comes to you. Now I get it. You know, so I think I can draw from that. Maybe I can understand it a little bit.
Victoria Volk 24:35
Can you tell us about June and what she taught you?
David Richman 24:38
So, I could tell you that I was always a little jealous of June in one sense that she we both had kind of the same traumatic childhood, right. And we both had the same kind of adversities. But oh my gosh, she found herself her husband has kids had a great career, I had all these friends, and she was so happy. And so, like lighthearted. And meanwhile, I was all rooting and heavy, hard to overcome with all this nonsense. I was always kind of like, Man, she’s living her life, she’s so happy. So one of the things about him that I remember is that she was just a happy person. And, and that’s, that’s really hard. But I don’t find that many like truly grounded, like, present, just happy people. And the fact that she had that for so many years is a real neat thing to remember about her, you know? And I thought, so. So that’s what I remember about her that what does she teach me kind of a lot, you know more about life, I’ve learned from keeping her present, right after she died keeping her present by embarking on these projects, and, you know, forcing myself to kind of think about her as I’m biking across the country, these kinds of things, that you know, that she’s had a really profound effect on my life, if nothing other than the person that holds up a mirror that allows me to, you know, kind of look at myself and examine, you know, and she might be that person that holds up that mirror. And if that’s the only thing that she’s continuing to do, how grateful Am I that she’s doing that? So I think that, you know, what I’ve learned from this experience, whether she’s taught me that, or directly or indirectly, is that examination and dealing with these things, and coming to terms with them, or attempting to come to terms with these difficult things, is a needed aspect of life. Like, we can’t just pack everything in a box in our brains and let it collect dust and think that it’s like it’s done. I think that we got to unpack all these boxes examine at all, and continue stronger, more enlightened, more grounded, more centered, more connected to the people around us. And I think she’s helped me do that.
Victoria Volk 27:10
So I was, you had mentioned that, at one point, you were kind of downtrodden and kind of woe is me, so to speak. Sure. So, was her diagnosis kind of what pulled you out of that? And then started this mission that you have now?
David Richman 27:27
Yeah, it kinda is a great question. And it all kind of happened, right about the same time. So I was in a very bad situation personally. And I had young twins four years old. And we had to get out of that situation. And it was I was unhealthy. I was a smoker, I was overweight, I had a ton of stress in my life, both personally and professionally. And I had to make a change. And at that same time, Jun called me and told me that she had got news about a tumor, brain tumor. And so all of that happened at the same time. And so I don’t think it was that event that made me change. But it was the series of events that happened kind of all at the same time, where I thought to myself, you know, you can, you can go through life reacting to things, or you can try to maybe for once in your life, take a hold of the things that in your life and determine your own course. And so I think that, prior to that point, I was I, I was in a very negative space, even though I had some great things happened to me, but I just, I don’t know, I just didn’t feel connected to who I am. And, and, and I felt like I wasn’t doing anything on purpose. I wasn’t doing everything because I got to do it. I was doing everything accidentally, and because I had to, but then I just kind of changed that mindset and said, No, no, no, no, you gotta, you gotta fix this stuff. And you got you gotta start thinking about, you know, the person in the mirror rather than, you know, what am I doing to make the boss happy? Or what am I doing to make the wife happier, you know, you know, doing things because I think I have to write, I got to start doing things because I get to do them. And that really, that really kind of 180y view on on on life and my perspective on things if that makes any sense.
Victoria Volk 29:32
Yeah, you began to live with intention. Yeah. what it sounds like.
David Richman 29:34
Yeah, absolutely.
Victoria Volk 29:36
So have you worked through then, like, where did you start like, because the you didn’t specifically say what you experienced in childhood, but I like to think that adulthood is childhood reenactments? And so the experiences that you had in childhood, obviously were are impacting you in adulthood, which I feel like is the absolute truth for all of us. Unless they’re addressed. How did you start? Where did you start?
David Richman 30:10
Yeah, that’s a good question. And like, I’m, I’m still in the midst, as I’m hoping everybody, I still in the midst of trying to be better, right, trying to figure it out, I always say that I have kind of everything in common with the person that thinks their best days are ahead of them. And not much in common with the person that thinks their best days are behind them. Right? I just don’t have because I feel like we’re, we got to constantly evolve, we got to constantly try better, we got to constantly learn. And, you know, sometimes I’ll fall into a pattern where guy that patterns been around for decades. And it’s caused me to act a certain way or react a certain way. And then I go, oh, you know, I could do better. And it’s like, well, if I still believe that after doing the same thing, the wrong way for 30 years, well, okay, I’ll, that’s I, I’m comfortable with that. You know, like that I could do better. So I think where it started was, I honestly, I did get my kids in the out of this bad situation. And I just said to myself, Look, dude, you’re in your 30s. I was in my late 30s, at this point. And I said, you’re overweight, you’re a smoker, you’re not healthy, you’re not happy. You’re not doing the things you want to do. I literally, Victoria stood in front of a mirror, going, who do you want to be? Like, literally, like, who do you want to be? Who do you want to be? Do you want to be this bitter kind of sarcastic kind of like, you know, like, take on the world by yourself? And just woe is me and whatever kind of person or do you want to just like, like, become something else? Who do you want to be? And the first thing I wanted to be was healthy. I said, if I’m going to be alone with my kids, I want to be around and, and, and, you know, especially in light of finding out that my sister was gonna die soon, or it might die soon from her cancer. And I thought, geez, man, I got to start becoming healthy. Well, how do you become healthy? While you stop smoking? How do you stop smoking, when you start running? Because you can’t run in Smoke certainly can’t swim in smoke. So, I’ll start swimming and run it. Right? Because that’ll stop me from smoking. And that was step one. And then okay, well, now that I’m healthy, I got to start losing weight. Because, you know, trying to run with 30, or 40, or 50 extra pounds on you is a lot harder than running without those extra pounds. And then I thought, Well, why don’t you sleep better? Why don’t you reduce stresses, once you get rid of people in your life that are bad influences? Or that you that aren’t positive friends that don’t uplift you? Why don’t you when you go to work, why don’t you start doing things? Because it’s the right thing for you to do not the right thing that you think your boss says you should do. Right? Why don’t you treat employees the way you want to be treated? Not the way you think that they want to be treated. But right. So I just started, like you said with intention, one thing after another after another after another. So it’s just it started at that point. And, and honestly, that was the beginning of a February of that year. And by March, I had identified K by July, I’d done a half Ironman, and by November, I did a full Ironman. So I said, I’m gonna take it on, and I really took it.
Victoria Volk 33:25
Wow, what year was this?
David Richman 33:28
This was so my kids were five. So that was 1998 or so.
Victoria Volk 33:36
That was when your sister was diagnosed as well?
David Richman 33:39
Wait, wait, no, I was wrong. That would be 2003. My kids are born in in in 1998. So that would have been 2003. Yeah,
Victoria Volk 33:49
That you changed your life just almost 20 years ago. And when your sister was diagnosed? Yes. Yeah.
David Richman 33:55
So that was 2003. She died in 2007. And I did events for a number of years, and then took on this project starting in about 2011 or 12. So it took me a long time to put together the book to make sure that I had the right people to just a couple years ago, do the bike ride connected all that I had to go through my editing and find it find the right publisher and go through their editing and the whole thing. It’s, it’s, you know, it’s not easy to put a project like this together. But yeah, that whole journey. In fact, I’ve been doing endurance athletics now for close to 20 years. And, you know, Mike, my kids know me as the, you know, they were five years old, six years old, when when they were running across the finish line with me, you know, and that’s all they know me as and so it’s kind of cool.
Victoria Volk 34:50
So, who inspires you today?
David Richman 34:53
Oh, wow. I think I’m more inspired not by a person, but I’m inspired by the belief that, that you can have an effect on others, even if it’s only an effect on my kids, my wife myself, you can have an effect on others. I’m inspired by that I’ll never forget, I was embarrassed one year, because I did an event to raise money for the cancer center that took care of June. And I was kind of embarrassed by the fact that I only raised a couple $1,000 That year, it wasn’t, it wasn’t that big of a deal. And I told that to the person that was coordinating the whole thing. And she goes, What are you kidding me? She goes, Do you know how many times we tell your story to donors? Do you know how many times we tell people Oh, this guy did, you know, this 87-mile run in Mexico. And it was to honor his sister. And he did this solo ride and run in Mexico, 22 and a half hours. And we we say those are the kinds of people that are dedicated to our center. And that raises us endless amounts of money. She goes, so just the fact that you let us tell your story is, is enough. And I’m just like, oh, that’s kind of cool, right? So even if even if it only affects one person, but I had no idea that they were bragging about my story, which was nothing to me. And, and it was helping them. And in these other ways, I think I’m inspired by the fact that you never know what good thing you might be doing, or what positive thing you might be doing, that might affect other people, and that they might carry on, you know, for a long time. So I think that’s what inspires me to continue to do these things is that even has a positive effect on one person, that’s good enough for me.
Victoria Volk 36:37
I agree. And for those listening who feel like, because I struggled for a very long time, like I had this innate sense that I could do more I was made for more like my potential was not being met. And I always thought, what is it going to look like? For me helping people like what does that look like? And so for anyone listening? What is something that it because you don’t have to ride 87 miles or, you know, 4700 miles to have an impact, right? So are there stories that you have people who you’ve met along the way who have done who have had equal impact, but maybe don’t think so or just for some examples for people to offer?
David Richman 37:22
Sure, you came every single day on that ride. And certainly, a ton of other times throughout this whole kind of cycle of lives journey. I’ve run into people who just like, if I talk about it, it’s as fresh as if it happened yesterday. And it’s probably something they’ve never thought of again. But it it touches me in a way where I just go, I people are remarkable. So I’ll give you two quick stories. So one is I was at the end of one of the most ridiculous days ever, like 17 hours, 156 miles, I like five flats. I was a soloists and have support that day. And I suppose on my own from morning until night, it was absolutely 17 hours on a bike, which is just, it’s just unbelievable. And this was like, day 30. So it’s like I mean, I’m, I’m not it’s like I’m not fresh. Want to start that day, right, huh? Anyway, so I get to the hotel, and the night manager is working the desk and she comes running around the corner. Because only God we were afraid you weren’t gonna make it. I go okay, because all the hotels were donated, right. And I was on a schedule. And she was I was so interested to meet you. Because my grandfather just passed away from cancer a couple of weeks ago. And he and I were so close. And I was hoping I got to meet you and I read about what you’re doing. I think it’s so great. And I’d love to make a donation. And I went oh, that’s really sweet. Right How nice. So, the only open restaurant at that time was like midnight was like a Burger King. So, I got back on my bike and went through the Burger King Drive thru. And and got myself a burger went to my room. And I get a call from this dis manager. And I go Yeah, what’s up and she goes, well, I went on your site and made a donation and it was a it was a very modest donation. Okay, very modest. And but didn’t matter to me, right? Yeah, I’m just touched that somebody would take take the time and she said I was wondering, is that a one-time donation or is that a monthly thing? Because I don’t know if I could afford that much monthly. And I went no, no, no, it was one time donation it doesn’t matter. It’s really really sweet of you. So it was just like, what I might have easily taken for granted that dollar amount. Right just ease it was such a big deal for her that she was afraid that she couldn’t afford that much monthly, but she still wanted to give I was just like oh, brings tears to my I know how sweet is that? So, another story is at the end of another really tip clip that every story starts with at the end of a difficult day. So, I did have a friend supporting me that day. And we found a restaurant that was open a little Italian restaurant, starving, and I started eating the meal. And we’re talking about the event and what I’m doing whatever and the waitress overhears it, she starts asking questions, and the owner comes over, oh, everybody in my family has been touched by cancer one way or another, bla bla, bla bla bla, appreciate what you’re doing. Love to buy you the meal. Wow, that’s pretty sweet. Because little family restaurant, it’s in the middle of Louisiana. You know, like, they’re not, you know, they’re not a chain restaurant that can afford to be comping meals all night long. So, I was really touched by that. And then at the end of the night, when we finished our meal, that’s three waitresses that we’re working on, I came over and wanted to take a picture with me, I thought is really sweet. And they handed me an envelope. And it had, again, a very modest sum of money. And I said, no, no, you don’t have to do that. They go know what you’re doing is amazing. We wanted to give you our tips for the night as a support. And I said, oh, my God, they work the entire night. Maybe second jobs, I’m guessing in Louisiana, the minimum wage is not very high. And they were so moved by this stranger they came in to give me their tips for the night so that we could, you know, continue to raise money. And I just thought, God, people are so nice. Right? Like, like, so. So, the impact that that had and how many times I’ve told those stories, those are just two of 1000 stories I could tell and have told, that just reminded me of how remarkable people are and what how a little gesture could go so far. You could go so far.
Victoria Volk 41:47
And I think too sometimes when we tell people Oh, no, no, please don’t do that. Or, you know, we are taking away their opportunity to feel joy, oh, their opportunity to give. And I, I someone, I don’t know, I had an instance or experience some time ago that really made me realize that that we have one hand forgiving and one hand for receiving and it’s just as important to be able to receive as it is to give and for people who have a hard time receiving. You know, it’s really easy to say, oh, no, no, please don’t. You know, yeah, I’ve been so important. It’s so important for the giver, though.
David Richman 42:29
Yeah, I’ve been that person my whole life, I have literally just started learning how to allow people to help me because it’s what they want to do. And I need to give them the opportunity to do what they want to do just as they give me the opportunity to do what I want to do. It’s something I’m pleased learning because I you know, I come this guy who was totally self reliant. So, then I I able to do the things that I need to do because I have to do them, right. Because I had to, well, who doesn’t? We’re all kind of that person. And then I go, no, like, I’m hosting a bunch of people. And I go, no, no, I got I got it. No, do you need help cutting? No, I got Do you need help prep? No, I got Do you need help setting up? No, Are you relaxed? I got it. me while I’m sitting there. God, I’m controlling the whole situation. I’m not giving them the opportunity to do what they want to do. Which is help. It’s a hard lesson to learn. But it’s it’s an important one. And I literally Victoria as old as I am. As much as I’d been through. I’m just now understanding that, that you know what, when people offer help, it’s not because they think you can’t do it. It’s because they wanna help.
Victoria Volk 43:35
Right. We often have that story in our head like, yeah, like you just said, like, will you know, we we believe that for whatever reason, we got it, we can take care of it all or we have you know, we’ve always done that, or we have the story that they think they think I can’t do it. Well show them. You know.
David Richman 43:55
I know, yeah. If that’s our own garbage, it still is, you know what it is? It is really nice, because when I go to somebody else’s house, I feel uncomfortable if I’m not helping. And here I am making everybody feel uncomfortable, because I’m not allowing them to help.
Victoria Volk 44:10
Yeah, we go against the law of reciprocity.
David Richman 44:14
So, I’m glad we’re able to talk about this because it’s kind of keep it in the front of my mind to always let people help if they want.
Victoria Volk 44:21
Yeah. So, what is one tip that you’ve, and I’m sure you have many but something that really sticks out to you that you’ve heard through other people’s stories, a tip that you would give other hurting hearts.
David Richman 44:37
Okay, well, I’m gonna give it to you because you’re such a good interviewer. But I never give this one away because it gives away the ending of the book, but I’m going to tell you to tell you because it’s such a great question and and I know that not everybody has time to read books and whatever, but it’s a lesson that I learned and came to my Consciousness literally at the very end of my bike ride. So, you know, I set out on this whole thing to start to heart conversations and better equip people to understand what they’ve gone through and all this other stuff. So I’m at the end of the ride, I’m literally like, on the other side of the George Washington Bridge, trying to figure out how to get into and, and navigate to the right place in Central Park. I don’t know where to go. And I see these two cyclists and they’re talking and I wait for them to finish. And I and I talked to one of them, and I say, hey, how do I get over the bridge? And where do I go? Where? Where do I turn what I do? So she gave me directions. And then she noticed on my jersey, that I had a stupid cancer logo, one of those charities that cyclists project supports. And by the way, all the proceeds from the book, go to support the cancer focus charities that were picked by the book participants. And she goes, Oh, my gosh, are you doing a ride? And I go, Yeah, she was would you ride from and I said, Oh, I came from Manhattan Beach. She was from Manhattan, like downtown Manhattan. I go, No, Manhattan Beach, California. She was like, what? And so we started talking for a minute she was Oh my god. It’s because I’m a cyclist. Because my dad. So that’s kind of cool. And because yeah, I died four years ago from cancer. And the only thing he really wanted to do was to ride his bike, and I go, Oh, my gosh, I go, what was he like? And she told me a couple of stories. And then she said, Oh, my God, you want to hear a story about his funeral. And so she told me this crazy story about his funeral. And I’m just like, oh, my gosh. And I said, Well, you know, what do you think about when you’re when you’re writing and blah, blah, blah, blah, blah. And so we have like this, I don’t know, seven, eight minute conversation. And I went my way, and she went her way will never talk to me or see each other ever pass will never cross again. And as I’m biking across the bridge, I’m thinking to myself, when I started this journey, if somebody would have told me, other father died of cancer four years ago, I would have went, Oh, I’m sorry. I’m sorry to hear that. Oh, I’m sorry. And I would have uncomfortably exited the conversation? And what about my wife? But now, I know that that was an invitation for me to ask, Oh, we close? How do you feel about it? Wow, it’s been four years, you know, how does that affect you? Or Wow, tell me about him, or whatever. And it had this great. You know, uplifting, wonderful, even if it was, it ends up being a heavy conversation, which sometimes it does. But it’s this, this nother level of connection where somebody says, You know what, even if it was a total stranger, they heard me or for me, I’m the total stranger who somebody’s interested to tell a couple of these very intimate stories to, and the way that, so it was a little practical joke. He loved. He loved cycling so much. And everybody used to make fun of the fact that he had this one jersey, that had all these little ice cream cones all over it, this one little bike jersey. So he said to his daughter, hey, you know, when you do the viewing, put me in my little ice cream cone, Jersey. And he thought that would put a smile on everybody’s face. And I thought to myself, how sweet is that? If I’d never asked her that story, I would have never, if I never asked her about her dad, I would have never got the story. And this was whatever, three, four years ago. I don’t think it’s ever left me the vision of a guy lying in his coffin wearing a ice cream cone cycling jersey just to put a smile on people’s faces. How wonderful is that? And so, very long answer to your question of what do you learn? That’s something to learn. It’s just lean in, like have the conversation don’t don’t be afraid to say something stupid. Right? And oftentimes, that question I’ll follow up with is where you close to them? Because might be a stupid question. Like, of course I was was my dad, you idiot. But most nobody’s gonna say that. You’re either gonna say no, I wish I was closer, or they’re gonna say yeah, actually, I was. And Baba, and I’ll be a prompt to continue to have you have a little bit of a connection to them. So again, sorry for the long answer. But But I think it’s what I’ve learned is that leaning in that asking a question that being able to be vulnerable, allow them to be vulnerable, but it’s safe in a safe place that you really care. That’s what I’ve learned is that’s that’s, you know, there’s that’s where some beauty lies and all of this nonsense.
Victoria Volk 49:40
I completely picked up on that right away. You asked her, you asked her about him, and I think it’s really giving people that permission to share because sometimes people feel like, especially as Grievers. They don’t want to, you know, bring the mood down or make someone else you know, we’re, you know, I could go into a lot of stuff with Christopher Recovery and everything I’ve learned, but it’s really about permission. I think for a lot of Grievers.
David Richman 50:06
What you said is about us being, you know, would you say grown up kids or whatever?
Victoria Volk 50:14
Well, I think it’s being curious.
David Richman 50:15
Yeah. But the earlier when you said we’re just like, grown up, kids are something.
Victoria Volk 50:19
Oh, yeah. Adulthood is childhood reenactments.
David Richman 50:23
Yeah. And what are kids want? They just want to be safe. And so, if you’re safe, if you’re given permission, and somebody you know that somebody is asking a question, because they care. Yeah, then Be safe, be free to give the answer and allow them to care. It’s it’s a weird dynamic, because I it’s totally understandable what you just said, you don’t want to bring people down. You don’t want to make them feel guilty. You don’t want to. But you know what, they gave me permission to talk talk. And so I what I learned is to lean in more and to talk and ask questions, and to give people permission to talk about whatever they’re going through.
Victoria Volk 51:04
Yeah, it’s my mission too.
David Richman 51:07
Nice. Well, that’s why we’re aligned.
Victoria Volk 51:09
Yeah. So, what are ways that others have supported you that you have found to be helpful as you transformed your life?
David Richman 51:19
Oh, my gosh, there, there is endless people, right. So, people have taught me how to be a better athlete. Right there people taught me how to how to have work life balance. I met, I met my wife, who has been unbelievably supportive of the things that I want to do. So to find somebody that believes in you is really amazing, right? It’s really amazing. Maybe she came along, when, when I would have allowed somebody to believe in me, because maybe I believe in myself a little bit more. But, um, she’s been great help. My kids have been a wonderful help, because they are very close to them. They’re pretty talkative. And we’re, you know, we’re pretty open about the effect that we’ve had on each other, and, you know, life has had on us and that kind of stuff. So I think that I mean, there’s just been endless people and endless circumstances that have helped me. And I think that probably does boil down to that. Like what you said a while ago, living with intention. I think it’s like, living on purpose, you know, like, like really taking charge of what you want to do and who you want to be. And being okay with that, you know, every once a while guy used to think it was so stupid. Well, I wouldn’t tell anybody I’m going to go running. Because I was an overweight smoker. What do I have any business doing range? I would hide? I would just do it on one. Tell me, buddy. Right? Because I was embarrassed well, from living on purpose. I don’t care what anybody else thinks only matters what I think, right? If I’m a runner, I’m gonna go for a run, I’m gonna tell people, I’m gonna sign up for a marathon. I’m gonna tell you why not living like living on purpose, what I care what anybody else thinks only matters what I think. So I think that fortunately, surrounding myself with people who were supportive, or additive, or at least not detractors. What I was doing that that has helped me along the way, for sure.
Victoria Volk 53:34
Well, I can see why you would hide that. Because if I were in those shoes, I would feel like, well, they’re probably just gonna say that. Oh, yeah, you’ve said that before. Or people say that all the time. And then it’s like that fear of failing, not for them, but for yourself. So if I speak it out loud, you know, it’s almost like this feeling on my drink my jinx myself, you know, totally. What if, what if I don’t follow through with this? Or what if? And I’ve already told people, right, so it’s almost like you’re creating your own safety blanket of Well, I’m not. I’m kind of committed, but I’m not committed because I didn’t tell anybody else. Was that part of it, too?
David Richman 54:16
Absolutely. Absolutely. And, you know, I guess a lot of people don’t start things because they’re afraid that they’re going to fail, right. And I would do that. Whatever I took on I knew I was going to succeed, but I wouldn’t take on things I possibly could fail X. I didn’t want to fail, right. So, I never tried to quit smoking until I quit smoking. Because that right? Never tried to become an athlete until I became an athlete because I didn’t want to fail at it. It’s like a member of that. I don’t know if you remember the scene in the movie, The Matrix when they’re getting ready to fight for the first time. And Laurence Fishburne looks at calories and he says stop trying to hit me and just hit me. Right So I didn’t want to try to do something, I just wanted to do it. Right. And so when I felt like it was okay to be this person, then I would use what you just said to my benefit, I would say to somebody, I’d go, guess what I’m gonna go do, I’m gonna go do 50 mile run, right? Look, I paid this entrance fee, I’m doing a 50 mile run, and then I have to do want to fail. So, so I use it to my benefit, right? Once I knew that I would do whatever it takes to accomplish it, like I had done it, you know, throughout my life on things that I had to do, right? Had to put food on the table or whatever, or you just figure it out. But this living on purpose, and doing it with intention, and being who you want to be or becoming who you want to try and become who you want to be. Um, yeah, then I would put it out there knowing that I wasn’t gonna fail, if I was gonna do something I was gonna do it. And but be confident, right? If you want to lose weight, if you want to be a better friend, if you want to work more, if you want to start a business, you want to do whatever, do it. But but you know what, you got to get out there and do it. And you got to tell people, you’re going to do it, you got to know there’s no way you’re not going to succeed, and you got to just get out there and try to do it. And that is a different way of living your life. And it’s, it’s really wonderful because I don’t care about failing. I don’t care if I don’t finish something. I don’t care if I. But if I if I go into it with good intention, I go into it with purpose. And I do my best effort. That’s all I can ask.
Victoria Volk 56:37
Do you think one thing that keeps people from following through is lack of accountability? Do you think accountability is the missing piece for a lot of people?
David Richman 56:47
Yeah, it’s a great question. I’m part of a group right now, where we’re dealing with that issue of accountability. And yes, yes. Now, there are people that are more accountable to others than they are to themselves. Right. So they won’t tell other people because they don’t want to be held accountable. Or they won’t believe it in themselves, because then they’d have to hold themselves accountable. And so I’m the kind of person where I am probably equally motivated by not wanting to let myself down as I am by not wanting to let other people down. Right. But I like this idea of accountability, having a partner that’s that holds you accountable, or group that holds you accountable. Or just write something down that you have to look at it as your own self accountability. But accountability is kind of like a score board. It’s kinda like a scoreboard. I don’t know very many sports that are played without an accountability without the score. Right? Yeah, we’re all winners and losers, we win. Sometimes we lose sometimes right? Hack in baseball, if you’re 5050, you’re doing pretty good. So, you know, I mean, as a win loss as a team, you’re doing pretty good. So. But without a scoreboard without accountability, you don’t have anything. So yeah, I totally agree with that. Totally agree with accountability.
Victoria Volk 58:12
So, throughout your life, what has given you the most joy, and hope for the future too?
David Richman 58:20
Oh, I think the most joy has come from learning how to lean into positive relationships, I think that’s where the joy is come from. I’d say second to that is trying to be happy, allow myself to be happy, right. I always felt like for a long time before I thought, I’m gonna try to get to a point and then I’ll be happy, right? We’ve got a better job and be happy for give me more money, I’ll be happy. If I just get a little bit healthier, I’ll be happy. If I lose a little more weight, I’ll be happy or whatever the thing is that we tell ourselves like when this happens, then everything will be okay. That never happens. So, you know, whatever you’re trying to get to get to be an emotionally better place. Whenever you get to that point, you’re not an emotionally better place. It’s just it’s just delusional. So I have learned or am attempting to continue to learn how to be happier and content and joyful and present and kind of grounded no matter what’s going on. Right? So I say, being happy has given me the most happiness being joyful has given me the most joy that and positive relationships. So I said a distant third is his writing, you know, so So writing is sort of given me a lot of joy as well. So, I think those those three things.
Victoria Volk 1:00:01
That’s wonderful. Those are good. Those are great. Yeah. I could actually go into another side thing about energy, because I was, I was kind of wanting to get into that about just the energy of emotion and how it gets stuck in us and then leads to disease. Do you have any quick thoughts about that? Based on the stories that you’ve heard from people and, and how you’ve connected the dots, to? It’s not just one grieving experience. It’s always many, right?
David Richman 1:00:37
Many. I mean, we don’t know what people have gone through what we’ve gone through. Like, one of the things that was amazing about this, this journey was I talked to tons and tons of people as potential book participants. What’s amazing is no matter how incredible, the story seemed, to me, every single person said, and my story’s not that interesting, right? I’m just like, wow, you went through, you know, the suicide of a parent, escaping, you know, certain death, you know, like, all these crazy things that you experienced. And it’s like nothing, it’s like, we’re just living, you know, people are just living the lives we live. Okay. So I do believe that some people benefit from believing in the negative. Like, some people like, ah, like, give you all this attention to all this negativity. And that’s what keeps me going. And there’s some people who draw themselves to all this positivity. And that’s what keeps him going. I’m not really sure if I know if there’s a cause between negativity and stress and negative ailments, or whatever. But I will say for certain that whether each person believes it or not, Victoria, there was something unbelievably uplifting and inspiring and hopeful and positive, underlying these negative experiences, maybe at the time, there wasn’t anything positive about what they went through. But how it affected others, or where they came out on the other side, or, you know, whatever, there was some amount of positivity, and it’s the it’s the negative stuff that, that that kind of, like, makes us react and makes us feel Ouch, in the pain. It’s like, oh, man, that’s rough. But it’s a positive, uplifting, hopeful stuff that stays with us. And so I, I think that it’s okay, to have any kind of positive or negative energy help get you through a situation. But let’s, let’s try to remember that the positive, the the positivity, the uplifting part of it, the inspiring the hopeful, the forward thinking, optimistic that we can take from these things, that’s what lingers, right. That’s what lingers, so. So whatever you need to do to get through the situation, fine. But I really tried to tend to focus on the positive and the uplifting and, you know, I, I get this thing from everybody. Sorry for rambling a little bit, but everybody reads the book tells me Oh, my gosh, I thought it was going to be so depressing. And so, so rough to get through. And every one of these stories, even though sometimes they’re so rough, they’re like kind of inspirational, right? And I go, Yeah, yeah, they are. And so what we can take from these negative experiences or difficulties in life, or periods where we need to grieve or go through trauma, is that there is something on the other side, right. Let me tell you, I tell you a quick story about Terry. So Terry’s His person who, oh my God first, I was so asked my wife, I was so reticent to tell her story, because I thought I might make her sound pitiful. Okay, that’s what I thought, okay, because she had been kind of abandoned by her family. She gets cancer, on a way to hospital. Her boyfriend, her fiancee says, I Sorry, I’m out. I can’t handle this, by the way, again, somebody else pregnant, you know, you’re you’re on your own. Then she goes in support groups for her particular type of cancer. And basically, everyone in the support group dies. So she’s been in there, she gets a recurrence of that cancer has to go in for a bone marrow transplant. I a second one. And what happens during the post care? The person that’s supposed to take care of her says, I can’t handle this. I’m not strong enough. You’re on your own. Sorry. You’re on your own. Oh, my God. You want to talk about somebody? She’s just trying to figure out why am I here like Everybody abandons me, everybody dies. I’m not supposed to be living, I can’t accomplish the things I want in life. And it’s just like, Oh my God. And almost everybody tells me her story is so inspiring. Because at the end, what she tells me is, she goes, Look, I live in a world of eyes, I got a 5% chance of this, I got a 95% chance of that she was I flipped the eyes to 5050 things are gonna happen, or they’re not. And she goes, all I want to do every day is wake up to see the sun to try to figure it all out. That’s it. That’s my goal. Maybe I will maybe I won’t 5050 chance. And I thought to myself, with everything that she’s gone through, how inspiring is it? How hopeful is how amazing is it, that she’s able to have this kind of 5050 view on things are gonna happen? Or they’re not all I’m looking to do is to get up one more day to try to figure it all out? Is that what we all try to do? And with what she’s been through, she still has that kind of positive, optimistic, Hey, son comes up. It’ll help me figure it all out. How cool is that? So anyway, again, another rambling answer to your question. But it’s those type of stories that I think are just so inspirational.
Victoria Volk 1:06:24
And I think you’re speaking to what my message is, too. And what I try, and share is that there is another side of it, but you have to like move your feet, you have to take action. It’s not just gonna happen on its own. I always say to, it’s like you’re suffering already, you might as well suffer and move your feet.
David Richman 1:06:44
Oh, it’s so true. In my first black, that was, you know, not like an industry book, or last level book or something, but was a book, I talked about this time that I did this event. And it was a first endurance event I did, I was still smoking at the time, I did it at seven mile rollerblade race from Athens, Georgia, to Atlanta, Georgia, at seven miles on rollerblades, oh, my gosh, completely stupid. And I had no business doing that. And at some point about 50 miles in, I was trying to rollerblade up this hill, I was spent of every single thing I could be spent up. I was pissed off at myself that I was a smoker, I was pissed off at myself that I was there, I was so angry. I was so like, this is not you. This is just not you. And I’m sitting there absolutely dead on my feet. Right. And I’m looking at this white sweat the soul sweat salty, right? Because the sweat was so as dripping on the asphalt. And it’s creating this line, it’s going down this hill. And I said, I’m comparing perpendicular to that. So I won’t slide down the hill. And I’m looking down. And I remember having this thought of as much as you think you’re don’t belong here. As much as you’ve given 100% of everything that you have, there’s no possible way you could go forward. And then I thought to myself, Well, every step with a rollerblade. But every point that I go forward from here is a place I’ve never been is a brand new experience brand new me. Like every, if I could just take one step, I’m gonna find out something new. I’m gonna it’s gonna be a territory and never been before. That was really empowering. So to what you said, yeah, if you can just keep your feet moving, you’re gonna discover stuff, you’re gonna find out a whole new you what you’re going to encounter something that you never would have if you didn’t move your foot forward. So I totally, totally ascribe to that opinion.
Victoria Volk 1:08:53
It’s I think it’s so easy to get caught up in the story of what happened to us or, you know, that we just allow it to dictate every action therefore, you know, moving forward. And yeah, so, yeah, I think we’re on the same mission. Let’s bring hope that there’s hope.
David Richman 1:09:19
Yeah, and there is a look at this. Some people have it rougher than others. And I don’t want to say that other than it’s just, it’s just life, right? You might look at me and go, I could never have gotten through the things you’ve gotten through and I look at you and go, what are you kidding me? I could have never gotten through the things you’ve gone through, but we’re just getting through it we get through. Right? The point is, is that we have a finite amount of time, we might as well make the most of it. We might as well try to be the best we can be right what’s that famous saying? I’d rather be an optimist and wrong than a pessimist and right. Right. So, I might as well try and might as well try to take that one step forward.
Victoria Volk 1:09:58
It was not even try, right? It comes back to you just do, just do. Me. Yeah, my husband helps, my husband, he just drives me crazy. This was before my personal development and stuff that I you know, stuff working on myself, but he would always say there’s no such thing as try you either do or you don’t? Yeah, it’s true. It’s true grab life by the handlebars right?
David Richman 1:10:20
By the handlebars and take one step forward, just do it.
Victoria Volk 1:10:25
Is there anything else you’d like to share?.
David Richman 1:10:27
And now if anybody wants to read the book, you could buy it wherever. And like I said before, 100% of the proceeds are going to support the cancer focus charities, and it’s not the money, it’s more the hope that, you know, if you read the book, maybe you can relate to one more person that needs you to relate to them. Or you can allow one more person to relate to you, because that’s what you need. So, you know, I think the bigger goal of trying to equip people to better have these conversations to more easily have these conversations to understand what other people are going through, or to allow people to understand what we’re going through or have gone through. It’s a really important facet of trauma. It’s a really important facet. Because, as I know that some people have it way harder than we do. But everybody has it hard in one way or another. Everybody does. Right? If we can just help them or allow them to help us or just help each other, get through it, or try to get through it. Right? How great is that? So, I guess I’d be the last thing I’d say if anybody’s interested do that. And I think, you know, hopefully the book will help.
Victoria Volk 1:11:40
Where can people find you?
David Richman 1:11:44
They can find me at cycleoflives.org.
Victoria Volk 1:11:48
Okay, and are you on social media at all?
David Richman 1:11:50
I am on Facebook, and Instagram. Just all you got to do is look up David Richman, or cycle of lives or both. And you’ll find me I often post about, you know, inspiring cancer stuff, inspiring life stuff. Also, kind of quasi documents, some of the crazier athletic things that I do. And so yeah, it’s it’s pretty fun.
Victoria Volk 1:12:15
Awesome. I will put all the links in the show notes as well. So, look there, if you want to connect. Yeah, thank you so much for being here and sharing all of the wisdom that you’ve gained throughout your experience of cycle of lives and with your sister and sharing her story with us as well. Thank you.
David Richman 1:12:34
Oh, you’re welcome. And thank you for asking so many great questions. You’re very good at what you do. And I know that you’re helping people so keep it up.
Victoria Volk 1:12:42
Thank you. And remember, when you unleash your heart, you unleash your life. Much love. From my heart to yours, thank you for listening. If you liked this episode, please share it because sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting know that what you’re feeling is normal and natural. Much love my friend.
Cancer, Cancer Thriver, Chronic Illness, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Podcast |
Anne Jacobs | 17 Years +++ Metastatic Checkin 2
SHOW NOTES SUMMARY:
Imagine being told you have cancer. But then imagine being told you have cancer for which there was no cure. At that moment, in an instant, life is forever changed. And, although many people hear the words “You have cancer” every single day, fewer hear that the type of cancer they have will, without a doubt, kill them. That is unless a cure is found.
Anne shares, in this follow-up, what hearing those words was like and the thoughts that raced through her mind. We talk about what life has been like since we last recorded, and how she’s doing now.
Anne also shares about what her first distance reiki session was like that she had with me.
I encourage you to listen to her first episode. We dig into different areas of her cancer journey in this episode and, as always, Anne brings lightness to her experience and wisdom to those listening.
If you could only plan your life 2 months at a time, how differently do you think you would plan your days?
RESOURCES:
CONNECT WITH ANNE:
Victoria Volk 0:08
This is Victoria of theunleashedheart.com, and you’re listening to grieving voices, a podcast for hurting hearts who desire to be heard. Or anyone who wants to learn how to better support loved ones experiencing loss. As a 30 plus year griever and advanced Grief Recovery Method specialist, I know how badly the conversation around grief needs to change. Through this podcast, I aim to educate gravers and non Grievers alike, spread hope and inspire compassion toward those hurting. Lastly, by providing my heart with yours and this platform, Grievers had the opportunity to share their wisdom and stories of loss and resiliency. How about we talk about grief, like we talked about the weather. Let’s get started. Hello, and welcome, again to grieving voices if you’ve been here before, and if this is your first time listening, thank you for being here. Today, my guest is and Jacobs. And this is actually a follow up episode to just check in and see how she is doing. We had originally recorded in early February of 2020, kind of at the start of COVID-19. And that episode actually didn’t air until April 6. And that episode is called The Road Less Traveled 17 years with triple positive metastatic breast cancer, which Anne has. And so Anne, thank you again for letting me follow up with you in sharing your follow up with my listeners. Thank you for being here.
Anne Jacobs 1:52
Oh, you’re welcome. Again, my honor. To be part of it.
Victoria Volk 1:58
So lots changed for a lot of people since we originally recorded and what I want to give you an opportunity to share really is how COVID impacted you on top of having cancer. And we’ll get into all sorts of good stuff, I’m sure but what is the update that you would like to share?
Anne Jacobs 2:26
Um, well, the the update, which is is good news is that the the current drug that I’m on, it’s called it’s a fairly new drug, it’s called an her to E n h e r t u is is working, which means it’s either keeping my cancer stable or best case scenario is what we call no evidence of disease or no evidence of active disease. And the last PET scan I had showed the cancer that’s in my right lung is stable, which I’m thrilled with because it’s a little bit currently is a little bit more active than my lower spine and my lower spine is is no evidence of active disease, which means the cancer is still there. But when the but the PET scan doesn’t pick up enough uptake to like if you if you went in had a PET scan and you got the same uptake as I did be normal. They you know, they wouldn’t consider anyone else having cancer so, so right now I’m I’m stable, which is wonderful. I always get nervous before my next PET scan, which I’m going to have in August. They call that scan scan xiety Because sometimes you have or sometimes I have a false sense of security that in between scans, oh everything’s okay. And then as you get closer to the next scan, you start to wonder, okay, well what is really going on? And what will the PET scan show? And is the cancer actually more active than than the prior scan? So that it can be a very extreme anxiety or it can be low level nervousness, but either way most I usually experience it so that so cancer wise I’m I’m doing well, I’ve been on treatment every three weeks for the cancer drug and then I also get immunotherapy to help boost my immune system about one to two weeks after my my cancer treatment. So that’s that’s a really good thing. And I’ll stay on in her two as long as it is keeping the cancer Bay. Thankfully, I’ve been here for 17 years doing this, but eventually the drug will stop working and then I’ll get on a new treatment. So that’s sort of another fear is that okay, well What’s next in the pipeline? I’ll probably ask my oncologist at my next appointment, if my next PET scan shows increase, you know, what do you it’s not, you know, a solid decision. But you know, what else is out there? What are my, my options? So, but for right now it’s it’s all it’s good.
Victoria Volk 5:23
It’s so good to hear. So glad for you and your family. I’m sure it’s like a party every time. Good results come back, I’m sure.
Anne Jacobs 5:33
Yeah, it’s, um, well, when I do get the PET scan results, I get them in my online health portal. And actually, I have my husband, read them, I can’t I don’t read them anymore. I used to just, you know, go can’t wait to get the results, read them. And let’s see what it is. But for I’d say for the past two years, I’ll just tell him, okay, the results are in you read them and tell me what they are. Because I’ve asked my oncologist to send them as soon as she gets them. And because I could ask her not to put them in my portal and just wait till my next appointment. But so he’ll read them. And if they’re good, it’s okay. You know, I physically feel myself relax. If they’re not then like, okay, you know, I usually I’ll have a physical reaction one way or the other. And then we’ll tell my kids, and they will react to them. And they’ve been doing it for 17 years as well. And they will be relieved and pumped up. If it’s good news. And if it’s not, then they say, Okay, well, Mom’s gonna go see your oncologist. And they’ll come up with a new plan. And, you know, we’ll go from their, I don’t know, probably someday, I hope it’s not for a long time, might have to have the conversation of well, we’ve done all we can, but I don’t think about that. And I am sure they have it in the back of their mind. But because who wouldn’t, but it’s not something that we we focus on. So it’s kind of like when the PET scan results. Give us like a wave like a wave. It’s not like a big high, high low, kind of in the middle of, okay, yes, it’s good, or no, it’s not. And then, you know, either path, you take either path to, okay, I’m going this way to the left, or going this way to the right.
Victoria Volk 7:33
So you get these wonderful results in the middle of a pandemic. And I’m curious how the pandemic has impacted, really probably your mindset in a lot of ways, I’m sure, or, yeah, I guess, in what ways has the pandemic affected you
Anne Jacobs 7:54
In the in the beginning, I’m not too much, because I have to be careful. Anyway, because my immune systems compromised. So I was wearing masks on airplanes. Before the pandemic, I was washing my hands like crazy. Before the pandemic, I was, you know, doing all that picking and choosing who I could be around when I could be around people, and that kind of thing. But as time went on, I kind of probably joined the rest of the world who wasn’t used to living like that, because I really resented having to wear a mask. I just like as soon as I would walk out of a store, I’d rip the thing off. I didn’t wear my mask outside. Because with my, I have half of a right lung that work. So if I had it on too long, it just affected my breathing. So as soon as I get outside, I just rip the thing off because I just resented another rule that I had to follow that I had no control over. So in that it was a balancing act. Things in our house kind of were the same. My husband is a he works for himself. So he and his assistant works out there their routine, you know, at work, but he got up every day and went to work. So it felt inside the house, it felt normal, but then when I’m home alone, I could I could go out and walk I’d be outside with the dogs, but if I wanted to go anywhere, you know, maybe I couldn’t the things that you know, if I wanted to go lose myself in TJ Maxx, you know, for an hour just looking at stuff. I couldn’t do that. I couldn’t do the things that I would normally use to escape to get back to doing things that maybe regular people do. So that that became pretty hard. And then I finally saw my mom laugh earlier this month and seen her body A year and a half, that was pretty hard. We talked every day, but not being able to know that she could fly out or I could go see her that was actually really hard. Because that was part of my life. She we would see each other 234 times a year, depending on my health and her health. So in some respects, I felt like I was holding my breath, probably like everybody else, and you hunker down and you do what you have to do in other respects. I’m sure. It was like another added layer two of constriction. And so I, I resented that end, I had to figure out, like another way, or a way to deal with another restriction, another thing that I had to conform to health wise, that became a little challenging for me.
Victoria Volk 10:51
Well, unfortunately, things have opened up a little bit. Yes. But it’s this time of recording. And towards the end of June here, it’s kind of sounding ominous, again, a little bit with this other variant. And, yeah, so I guess we’ll all see. Right?
Anne Jacobs 11:12
Yeah. Yeah. And I think, you know, if, you know, if you’ve been through something, you kind of know what, you know, what your experience was, and how you eventually made it, through it, that experience and so you can rely on that information to, you know, prepare you for hopefully, you know, we won’t go through this again. But if we have to, at some level, whether you’re working from home, or you have you know, little little kids at home, or retired or you’ve got parents in a nursing facility, you can lean back on the experience you had and hopefully not make or make life a little bit easier. I guess, you know, we’ll see. But yeah, for for right now. It was when I when I was back in Michigan, they I live in California was back in Michigan, they had lifted the requirement to wear a mask, if you were fully vaccinated. So as soon as I got out of the airport, you have to wear an airport, because it’s the federal regulations and all that and then was with my mom and a doctor’s appointment, you wear it in the common areas, and then in the exam room, you can take it off. But other than that, it was nobody really was wearing a mask, it was just this wonderful, like joyous feeling of awe. You know, we just felt normal again. And then I, when I got back here, just a couple days there to California, is just a couple days later, when they lifted the mask requirement that you know, you’re fully vaccinated. I’ve noticed there’s more people where I live, will wear the mask than than they were in Michigan. But either way, you have the choice, you can wear it or not, you don’t have to. So I don’t.
Victoria Volk 12:58
So what have you found that has been helpful to you living with cancer during a pandemic,
Anne Jacobs 13:05
The thing that kept popping up for me, which, or I should say, percolating to the surface, which means I’ve been thinking about it, or it’s been, I’ve been pushing it down and and then it kind of keeps coming up and up and up is and I felt this for a long time I have, I tend to minimize for myself. Like the smaller losses, which what I consider, I’ll explain in a minute, what I consider to be smaller losses in my life, have three friends whose their, their sons have died to way too early. And one from cancer, one by suicide and one by accidental overmedicating. And that to me, is just admire these women so much. I just don’t know how they go on. But you know, they do. And I look at them, and I say, Okay, well, and just because you, you, you know, your legs hurt today and you can’t walk or all you can do is brush your teeth and go back to bed. But your kids are here, you know, my three sons are here. And so I use that as a as a benchmark. But what I found is that the more that I don’t deal with sometimes I’m even embarrassed to say like, I consider them to be insignificant because the loss of a child I just can’t even imagine. So the rest of it I think, okay, I should be able to deal with this. Because I think God forbid what if I lost a child? Then I would say I would give anything back Yes, I will live with neuropathy in my like from my feet up to my You know, hip bone, I’ll live with that. No problem, I just want my son back, I will live with the fact that, you know, I’m in bed for five days, or, you know, I’m in the hospital for five days with double pneumonia. Like, I could do anything, or I would do anything. And I know they would, too. So it’s this. I don’t know, if you call a push pony, but I had to realize that it’s okay for me to grieve what I consider the smaller losses, like to pay attention to them, and recognize them, they all pile up, and then I become, I’m tired, because I’m not sleeping well. So I have low energy, but at the same time, I’m like, lethargic, I don’t feel like doing anything, I’ll, I can’t concentrate. And if I do concentrate, it takes I have to just pull everything out of me to sit, you know, to do a task, when I get anxious or nervous or depressed. I, I don’t, some people I know, eat my responses not eating. If I allow all these little, what I consider to be little things to pile up, then it becomes this big, huge mess. And then I don’t know where to start. It’s all this stuff in a pot, I pull it out, it’s stuck to everything else. So where do you start and it becomes a little overwhelming. And then I might, you know, react or to emotion when it doesn’t warrant it, like I might become too sad or too angry. And then I know, okay, something else is going on. I really, I have to allow myself to, to pay attention to these little things along the way recognize them into me knowing that they’re they’re not going to go away. And I’ll probably feel the same thing, you know, next month, but if I don’t allow myself that ability to, to touch them to feel them these and I’m talking about the losses, and that’s what it feels like to me. You know, pick it up, hold it right, again, because if they’re like unwanted houseguests, okay, I can’t, this is what I can’t do. But what can I do? That’s sort of been my motto, but sometimes that doesn’t work. And then I know I have to do a little bit more paid more attention to what’s actually happening with me. Instead of saying, Hi, energy, I’m going to do this today. And I’m going to be grateful, I’m going to focus on the joy, I’m going to do something one thing that makes me happy, whether it’s for myself or someone else, you know, I go through my checklist, but then if that doesn’t work, then I know, okay, I’ve really got to, I’ve got to dig a little deeper and allow myself to do that. And it’s my own. I don’t know, comparisons not the right word, but to allow myself to to feel sad or angry that I’m in this situation. And my kids are are okay, and my husband’s Okay. And you know, my family’s. Okay. So that actually has been popping up quite often for the last I would say six months.
Victoria Volk 18:01
I can’t remember when. But it was after we recorded. I offered you a Reiki session. Yeah, you took part in and it was a distance Reiki session, obviously, because you’re in California, and I’m in North Dakota. And what came of that is you had shared with me after that you feel like you need to well, actually what came up during the session, and I told you was that. You need to start painting? Yes. Not knowing that you were a painter. Well, one time you painted that.
Anne Jacobs 18:34
Yeah, yeah. Like today. You look around with it. Yeah.
Victoria Volk 18:37
So have you been painting?
Anne Jacobs 18:40
I did. Actually. I went out and I bought this little, some little watercolors. I just mess around with it. I am not a painter. But so I did. I went out and bought that. And I did for probably about a month and a half. And then life started happening. And yes, that was something that came from the Reiki session. And it felt right. You know, it feels good. I have my I have it all downstairs for I keep some of my craft things. And but I have not done it for the last. I think January maybe because it’s the new year. But I haven’t done it for the last few months. But that does. And I know I’m not saying anything new here because but just to have the brush and you know, stick in the paint, whatever. I don’t even think I just start. It can be just movements of my hand on the paper or, and that’s usually actually what it is. And then I’ll look at it and say okay, well, this looks kind of angry or this looks peaceful. Or I recognize exactly what’s going on. And it’s a way to get it out of my system.
Victoria Volk 19:47
That’s where I was going. Yeah, that’s exactly where I was going to get there. Yeah. No, but that’s where I was going that i You didn’t hadn’t told me that part, but that’s what I was suspecting in what you were saying to about what you were sharing about minimizing. And in just these other losses, these smaller losses that are not small, I’m not minimizing them at all those were your words, but when you’re feeling that way, that might be a wonderful thing to pull out when you’re feeling that way. And maybe even take them outside you know.
Anne Jacobs 20:21
Yeah, that that would be a, that, that would be a good thing. And I was actually I’m headed back to to Michigan for about three weeks. And I was thinking, well, I could, I could take it with me and just have them out, you know, and just walk by, but I can do that at home as well. But yeah, it’s, it’s a good way to, to just either consciously or subconsciously get the feelings out. And I used to, I used to do it a lot. So it was the Reiki session was very sort of eye opening, that you had picked up on that when we had never talked about it before.
Victoria Volk 21:05
Do you like to share more about your experience with that Reiki session?
Anne Jacobs 21:10
Sure. So I had thought about doing one here. Years ago, I had done some research, and I’d found someone and then probably, you know, cancer gotten away, and I couldn’t do it. And then I stopped thinking about so I thought, Okay, we’ll give it a try. And truthfully, like, about how’s this gonna work? Because you’re a nurse, Dakota, I’m here. And, you know, how does the energy you’re not here in the room with me? How does the energy flow? How does this even work? So I was not skeptical, but curious. That will, okay, we’ll just, we’ll see how it goes. But I found that listening to the music, and, you know, knowing you were on the other end, because we didn’t talk for what, like, an hour hour, that that sort of mindful connection, it made a difference. So I kind of in a way I picked I had my eyes closed, you know, as laying down, and I thought, well, Victoria is in North Dakota, but what if she was like right here, and I have my eyes closed, because it’s something you when I get MRI, seguela, when I get MRIs, I close my eyes in the machine, and I just picture okay, my eyes are closed, I’ll just pretend that you know, I’m by a lake or I’m in the river in, you know, near river, it’s usually water. So I do this visualization. So I thought well, alright, yeah, I’ll just pretend you’re here in the room and what how would I be feeling what would that you know, look like anyway. So doing that made for me made this the, I guess, the energy connection. And then afterwards, I was, I felt more focused or in tune to what was, you know, going on with me, I felt a little more, I felt more at peace, a little more energized. Because I felt at peace, I didn’t have the heavyweight of my anxiety or dread, do feel that like as a weight on me, so it felt freeing. So open, and I kept that feeling, probably for a month and a half. And then, you know, real life happens and just kind of piled on again. But I, I found it I thought, Okay, well, this would be a good tool to I have to consciously add this into and make time for this because it was it was more effective, honestly, than I thought it was going to be. But I also realized that the long distance, I had to, like I said, I had to maybe work a little bit harder to make that connection. Because when someone’s in the room with you, you know, you feel their energy, you feel their presence and all that. So I had to just coordinate that with what was happening. And after I did that it, you know, it wasn’t that hard. Because, again, you’re I’m laying down and listening to the music and I’m, I’m kind of doing my work and you were doing your work somewhere between North Dakota and California. They connect him.
Victoria Volk 24:14
Well, that just speaks to the power of the mind. Right. And our intention, and in a Reiki session, there is nothing that anyone needs to do the clients like you there was nothing you would have had to do. Right be open to receive. Right. So you just took it one step further for your own intention. Yeah, but your own intention into it. And that’s, again, I’m just saying like that speaks to the power of intention. And so we can bring that in all areas of our lives.
Anne Jacobs 24:47
Yes, yeah. Yeah, we can because for me to live with intention. It’s a gift because I can’t do it fully as I would like to, but I can do it and Little People So just because of, again, you know, my energy level how I’m feeling and, you know, the other living with this unwanted houseguest have to deal with. And so that I guess, also is part of, you know, when I call some of my smaller losses is to say, Oh, I’d love to do this, but I can’t, I like literally, I can’t physically finish something that I might want to pursue. So I have to do it in little bits and pieces, knowing that I’ll never get to the end result that I might, that I might be able to if I didn’t have cancer, again, it’s and that has actually, that’s, you know, popped up these last few months, because I’ll see people around me doing these wonderful things, you know, you with your, your podcast of the year amazing guests and other friends who are, or they are living with intention. And I know they have their bad days. And I mean, everybody does, but they’re seen through and I know that can’t see something all the way through, I can go partway and enjoy what I can, but then I have to recognize, okay, well, you know, if I can’t, I can’t even think, you know, if I can’t do what XYZ but I can pull up my watercolors and I can, you know just kind of mess around with that for you know, an hour, or I can I can write or I can sit down and write for 15 minutes, which is a participated in a podcast writing with a nonprofit, they help cancer patients and, and, and the woman said, you know, you just for 15 minutes, and you know, she gave us different prompts. And she told us the best way to do it. This is just take 15 minutes, just you know, sit down and write this and come back to it. So I can do these little things in pieces. Would I ever be able to write a book? Yeah, probably not. But I have a real, you know, paint, learn how to really paint, you know, probably not, but this is what I can do. So it’s that balance of recognizing the losses. And then also, I can’t do that, and allow myself the time to grieve it. But yes, I can do this. And so I can live with intention. Not the way I’d love to. But I still can live with intention.
Victoria Volk 27:20
I disagree on that. I disagree on the book writing part of very much disagree on that.
Anne Jacobs 27:25
I don’t know.
Victoria Volk 27:26
I very much disagree. Now speaking of writing, because when we last recorded, we had a came up about writing your children letters. Yeah. Have you gotten back into that? Because I You had said that you had started doing that?
Anne Jacobs 27:42
I did and so I have been I haven’t gotten to the point where I’m writing, you know, life time, you know, I should probably well anyway, I’m sorry. Yes, I’ve been, I’ve been sending them cards, I’ll find a card that I like and then I’ll, I’ll write a note in it. And in I’ll mail it and I don’t do it. Like I could probably do it every day. Maybe like mommy’s lost it so but I’ll even you know, our youngest is he’s in transition for he’s been home for the year for for COVID. Now he’s looking to go back to school. So he’s been loving this as well. I’ll put a letter in the mailbox for him. That just turns around and comes right back. But it’s always fun to get something in the mail. So I have I have been doing that. And then I’ve also been sending them, you know, little texts, here and there. They’re so busy, that the texts have to be super short. I love you or I think you’re amazing, those kinds of things. But I haven’t gotten down to actually do that writing that we’ve that we were talking about where it’s more of a
Victoria Volk 28:50
Lessons from mom.
Anne Jacobs 28:52
Yeah, thank you. Yeah, yeah.
Victoria Volk 28:56
So don’t say I never told you so.
Anne Jacobs 28:59
Yeah. Yeah.
Victoria Volk 29:04
What do you look forward to, for the rest of 2021?
Anne Jacobs 29:08
Well, I take it in, you know, little snapshots. So I leave mid July. And I’ll go back to Michigan for about three weeks. And we have a cottage in northern Michigan. And so Chris and the boys and, and one of my son’s girlfriends, they’re going to come out for the last the last week, I’ll, I’ll be there. They come out maybe four or five, four days after and they stay for a week and then I’ll stay for like another week or so. So I’m looking forward to that and then then we come back and and I get my pet scan. And then you know have the results of that. And that that’s sort of is a go that far out. But beyond that we’re hoping to either go have a family trip to Yosemite or the Grand Canyon. So that’s, you know, out there and then my one of my brothers Is, is doing the Half Ironman back in Michigan. So in September, so I would actually like to, if I can, I’d like to go back for that, again, everything beyond the PET scan is possibilities, I’ve lived with that. So that’s not, you know, for the, thankfully again for the last 17 years, so it’s, that’s not a new feeling. And that’s not a new way of living. For us, it’s like, well, if, you know, if I’m feeling good, then we’ll, we’ll do this, if I’m not, then you know, then we won’t. So we’ve either postponed or had to cross off, you know, many different things to do as a family, but I’m hoping, because I am, I mean, I am feeling pretty good. But um, I’m hoping that we can get those participate in those things. And then comes, you know, Thanksgiving, which is a big boy, you know, they love Thanksgiving, and then there’s Christmas, and, you know, everything in between. So, I always look forward to those times, because I know they’re going to be home, my mom might be able to, to come out. So I have the fissures, the possibilities, and then the maybes, you know, the dangling ones. So that kind of keeps me going. And as you get closer to each one, as soon as I get the PET scan results, then I’ll know what the rest of the year can look like, for me. So it’s like, living in two or three months chunks at a time. I don’t really have the luxury of I can plan, but I don’t know if it’s going to happen, you know, past August, but then again, it goes back to getting myself to the point where I’m okay, you know, focus on my, I know I have to deal with because they keep coming up these these losses, and then, okay, I feel like I’ve got my head above water a little bit and then get back on track with the things that, you know, I can find joy and things I find hopeful. And, and the things I have have gratitude for. So it’s a it’s a little slower process this time around.
Victoria Volk 32:06
Do you know of other women in your area that have that are living with metastatic breast cancer?
Anne Jacobs 32:12
No, not right now. I know women who are living with either currently going through treatment or have gone through treatment that they’re not staged for, they might be one, two or three, but I’m in a Facebook group with metastatic breast cancer Facebook group. And that that is that is, is pretty helpful. Because I can if I’m when I need to get on and read I can, I can comment I can interact, or I can just sit back and read other people’s comments, that seems to that helps a lot everyone posts on there, you know, good news, bad news and in between, and you will get so much support. And it’s you know, it’s heartfelt support that you can feel through, you know, the computer like you can with the Reiki, you feel that through the, you know, the headphones, and that. So that, to me is pretty helpful. And you’re talking with women who are going through the same thing, they might not have the same cancer characteristics, and they might be on different drugs, but the issues are usually the same.
Victoria Volk 33:20
Yeah, I was just wondering if there was anyone close to you? Maybe even in that group?
Anne Jacobs 33:26
Um, there probably is. In the past, I’ve said, Yeah, let’s meet for coffee or something that didn’t happen. So right now, I don’t feel a strong need. But it might be in the future. You know, I never never say never to make that connection. I know, it’s I know, it’s there course there’s gonna there’s going to be women, you know, around me or within like, an hour two hour drive, that, you know, you could go meet the Bay Area. There’s a gal I know, she’s, she’s been dealing with metastatic cancer, she lives in Southern California, she’s very active. And I used to see her more often, just because of different things would bring us together. Now. I you know, you interact through the Facebook group, but you know, if I needed to, I could pick up the phone and call or you know, and talk. So that’s always available.
Victoria Volk 34:20
And I think there’s just I mean, it’s a good thing to have people who really get what you’re going through. Right. And so just that you have that support there. Yeah, of people who really do get it. Yeah, he’s I can’t I still can’t wrap my head around 17 years like I When is your 18th anniversary
Anne Jacobs 34:44
Next year. So it was actually July of 2004. And my kids were little, my youngest was had just turned four. We were in at our cottage in Michigan and my back started hurting, I thought, oh, you know, I’m running around in the water and I’m picking kids up and moving and you know, all that. So I tweaked my back. So I got a massage. And it seemed to help but the pain didn’t really go away. And then it became pretty acute. So, you know, I ended up, I came back and I asked my oncologist, you know, told him what’s going on? And he said, Oh, it’s probably sciatic nerve. So he, we got an x ray system, like, right below, you know, my lower spine and off to the right. It came back clear. And then probably a month or so went by, and I called my primary care physician and said, you know, had this backache, it’s not going away. So he x rayed from my waist down, and you know, boom, that’s the cancer showed up in my lower spine and in my left hip, and so I didn’t get officially diagnosed, you know, for months, probably till October. And then I didn’t start treatment until maybe November, December. But I look back on I know, the cancer was there in July. It just, I hadn’t got it diagnosed yet. So I was used. July is my the month. So 18 years will be next year in July. Wow, that’s examinable. Maybe I can be I’ll come back and in July of next year, and we will see how it’s gone.
Victoria Volk 36:31
I would love to have you. That’d be great.
Anne Jacobs 36:36
Yeah, and it’s, you know, I wouldn’t, I would never expect anyone I would never expect you to, it’s too hard to wrap your head around, like, what does it look like to look to live with this? Or, you know, any sort of cancer? You know, what is the day? What do you do through the every day?
Victoria Volk 36:53
Ride the roller coaster?
Anne Jacobs 36:55
Yeah, yeah And it’s, um, it is pretty hard to understand. Unless you live through it. And I wouldn’t want anyone to have to understand it. But 1000s of women who are, you know, doing this every day, you know, you wake up one morning, just what you have, you know, you have cancer, okay. And it’s not never going away. Oh, okay. And, you know, depending on your life experiences and what you’ve how you’ve handled things in the past that will influence you moving forward. And when I got diagnosed, initially, I had this alright, let’s, you know, stage three, we’ll beat it, we’ll go through chemo, there’s a start, and there’s an end date, I’ve got this. And then you get the call. No, it spread, you know, I had no comprehension, I didn’t know where to put my feet down. This was something that I had never encountered before. So I had a friend help me sort of navigate and get get a second opinion. And you go from that to a third opinion. Go back to your oncologist, you make a plan. So it’s just like moving forward without a map doing the best you can. So that’s led me to here. I’ve learned a lot along the way. But pretty amazing. I’m pretty grateful, very humbled by the fact that I’m still here. Very, very grateful.
Victoria Volk 38:15
I love that you’re here. And I love that our paths have crossed, and we will continue to do these follow ups. As long as appreciate it long as my podcast exists.
Anne Jacobs 38:28
Well, you’ve had like, lived to earlier, you’ve had some pretty amazing guests. I was thinking, Why? Why is Victoria want to talk to me? These other people are just there. I haven’t gotten through all of your podcasts yet. Because I’ll sometimes I’ll go back and I’ll re listen to, you know, some of them. Oh, what did he or she say? But just you’ve had some really? Some really impactful conversations.
Victoria Volk 38:55
Oh, there’s so many more to come. I bet. Yeah. I bet. Is there anything else you’d like to share today?
Anne Jacobs 39:03
I can’t think of anything, except I guess to reiterate, what I’m I’m learning or I’m allowing myself to just deal with the, again, what I consider the smaller losses so that I can have a more peaceful existence to do find what works for you and allow yourself you know, if you have that should I should do this, or I should do that. When those shoulds come up too much. I need to really pay attention because then I’m not doing what is best for me to be the best version of myself and allow myself to push the shoulds away and the judgment therefore I have on myself and just focus on if I do this, I’m going to feel better. I’ll be a better version. I’ll be a better mom, wife, friend. I’ll be a better and be a better person for myself too.
Victoria Volk 39:54
That’s perfect. And we will end it there because I think that’s perfect.
Anne Jacobs 39:57
Thank you. Thank you again Victoria,
Victoria Volk 40:01
Thank you for being here and for being you and sharing all that you’re learning along the way. I appreciate you, folks. And remember, when you unleash your heart, you unleash your life. Much love from my heart to yours. Thank you for listening. If you liked this episode, please share it because sharing is caring. And until next time, give and share compassion by being hurt with yours. And if you’re hurting, know that what you’re feeling is normal and natural. Much love my friend.
Cancer, Chronic Illness, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Podcast, Widowhood |
Rachel Engstrom | Life as a Cancer Wife, Widow, & Never a Mother-to-Be
SHOW NOTES SUMMARY:
Eight years following the death of her husband from acute lymphoblastic leukemia, Rachel reminisces on the love she lost and also the pain and lessons that came from his death as well.
Rachel found purpose through her pain in writing about her experience, which later became her book, and also through cancer advocacy.
In this episode, she shares the story of her husband’s diagnosis and death two years later, as well as how she found her way to feeling better.
On top of the loss of her spouse, she would later have to come to terms with the fact that she will never have biological children and, also experienced a health setback herself, later being diagnosed with a disease of the colon.
RESOURCES:
CONNECT:
Victoria Volk 00:00
Thank you for tuning in to grieving voices. This is your host Victoria Volk, and today I have Rachel Engstrom with me, she is has a masters of social work. She is a certified health education specialist and has written a groundbreaking memoir self help book on her experience as a young cancer wife than widow with the increasing number of young women and men becoming widows or widowers due to not only cancer and serious illnesses, but also now COVID-19. This resource is needed more than ever, Rachel shares her journey in a raw and honest way while providing step by step resources to help you navigate your own journey. Never before has there been a combination of the personal grit of the healthcare journey, along with steps and how to navigate treatment diagnosis, the ins and outs of hospital life, employment, finances, insurance, self care, grief and loss, and much more. You can find wife, widow now what how I navigated the cancer world and how you can too, on Amazon, which will be linked in the show notes. Thank you so much, Rachel, for being here.
Rachel Engstrom 01:12
Thank you for having me.
Victoria Volk 01:14
So let’s talk about the birth of your book. And really how this probably what started out as a passion project was which was your life unfolding? How? Where does your Where does your story begin?
Rachel Engstrom 01:29
I am about to be 39. And I moved here I’m in the Minneapolis St. Paul area I moved here in 2000. So almost 21 years ago, to go to the University of Minnesota. And in myself, I moved here not knowing one person, no family, anyone was here that I knew. And in my sophomore year, first semester, I went to a birthday party. And a friend of mine it was she was having a party for her boyfriend and his friend from work came. So this tall guy who’s six, two, who’s, you know, almost seven years older than me showed up. And I just thought that he was really cute and nice and you know inquired about him to the friends the next day. And he did the same about me. And we dated for three years. And then when I graduated from college, three months after that, I got my first job right away. And then I got married at 22. And he was about to be 28. And then so he worked nights the whole time we were together. So that was pretty cool. I mean, I missed him a lot. But that was pretty cool. And that I was able to become my own independent adult person within my 20s and still have that relationship and that consistency in my life of being with him. And then when I was 28, and he was about to be arxys. I was 28 and he was 35. He just really didn’t feel well one day and went to the doctors that turned in to go to the hospital for blood transfusions turned into go to this clinic. They didn’t tell us it was a cancer clinic that he was mis diagnosed with something and then the next day had a bone marrow biopsy and two days later, he’s diagnosed with acute lymphoblastic leukemia. So at age 28, I’m already grappling with a few months before that learning that I have endometriosis cyst, whatnot that had ruptured on my reproductive organs. I’m grieving that I might not be able to have children, things like that. And then this couples with that, and I have to very, very quickly learn how to navigate the serious illness, world insurance, disability, all these things, which is why you list that all of that, along with having this cancer life become my norm. So I’m working eight hours running back home to let the dog out, then running the hospital for a few hours then running back home, you know, petting the animals trying to pay attention to them for 20 minutes before I you know, pass out, rinse and repeat the next day. So that was quite a lot. So that was my life. I did have a lot of support from my parents who are in a different state. They came and lived with us for 18 out of the 27 months that my husband was sick and he got a lot better and then relapsed, unfortunately, a year and a half after his initial diagnosis. So we had to hospitalized him after he relapsed on the day of our eighth wedding anniversary. And what was interesting is going back a year when he in so he got sick in January of 2011. He had a fever and had to be hospitalized in August of 2011. And one of the nurses said, Oh my gosh, you guys are still together. I can’t believe you’re together. This is amazing. And I was like what are you talking about? And she told me that during cancer and serious illnesses, that in her experience of 25 plus years she’d seen 70% of more people come back that needed medical care that their significant others left them, or the marriages didn’t work her out or things like that. And that just totally blew my mind because we had we knew very quickly on that this is scary, you know, of course we’re hoping he’s not going to die, but that we’re in this together we can’t afford to fight or you know, disagree that much or those types of things because this is such a serious thing. So in January of 2013, he had a bone marrow biopsy or excuse me, he had a bone marrow transplant. days after I had a surgery for endometriosis. And he had had a lot of chemo and radiation to prepare his body, when you have a bone marrow transplant, they have to wipe out your entire immune system. Like you’re a newborn baby to take these stem cells from umbilical cords, that was his donor. And just the chemo, the radiation, all those side effects ultimately ripped up and shredded his kidneys, his bladder, lungs, things like that. So he was in the ICU once, you know, it was preparing for him to die miraculously, within a two week turnaround, he was out of the ICU out of the hospital in a rehab, was learning to walk again, do all those kinds of things. And then he went for an appointment and things kind of went downhill. And then on April 17, I was told, I got a call early in the morning, and he said I can’t breathe, I can’t breathe. And he had been on regular like oxygen. But they needed to put them on high flow oxygen. He just he wasn’t breathing well through the night. And then they called me and said he needed to be integrated. And he got on the phone and he said I love you to each other three times. And then when I got to the hospital, he was kind of freaking out. And I asked them to give them a high dose of pain medicine. So it would just knock them out. And then once he was comfortable, I was sitting in this chair and I had three doctors come and tell me I’m sorry. And they said we’ll decide within 48 hours, you know, when’s the appropriate time basically to take them off life support. And two days later, when we’re going to do this is my 31st birthday. And two days after that, so then they said okay, well wait another 48 hours, but I just knew within that he was gone. It wasn’t even him anymore. You know, he’s just seeing him slip away. And what was amazing is what carried me through significantly was my my faith, my faith in God and all of those things. But I just had so much peace and so much grace within it, I was just very numb to all of it. And I believe that, you know, the biggest factor was my faith for feeling that way. But what I learned later learned later, when I was trying to be in learn more and being young widow groups and things like that. What I was seeing that I didn’t quite realize is I had I was given so much grace and that I was able to be with him as he was dying. So many people have their significant others die at war, or you know, a freak accident at work or those types of things, I was actually able to be with him. So on the 21st I signed the papers and everything. He was so amazing. He did extra bone marrow biopsies and spinal taps and things like that, for research at the University of Minnesota. So I signed the papers that morning for him to donate his body to the University of Minnesota, which is what he wanted to do. And then called our Mr. It’s Sunday’s of using church then we had to wait for him to come and then had the few family members that were there say bye. And that I had made a heaven playlist the night before because I knew that he was going to die the next day. And I had them unplug him, we cleaned up his face a little bit. And then I played a playlist and help my husband, my life. My best friend, everything that I knew is I waited for his heart to stop. So I was two days after I turned 31. And then I walked out of the room and I was Rachel 2.0 I was a widow. So I just I had to restart. And I had to reboot my life literally like a computer. Because I had been thinking I was going to have you know, little feet running around the house that are half me half him, I’m going to have someone help me pay for this house. We’re going to go on trips, we’re going to do all of these things. So I had to figure out how to navigate all of it. The cancer part was hard enough, but this was navigating all of it. And especially with being a 28 year old cancer wife is hard. But being a 31 year old widow is insanely hard because you don’t know anyone else in your circle of people going through that. So ultimately that led me to the idea of writing a book so my book wife widow now what is chronological order of my caringbridge Medical posts that got emailed out to everybody my Facebook post. And so it’s my narrative between all these real time posts. So when I’m figuring Insurance I walk you through bam bam bam This is how you do it this is diagnosis treatment work when people want to help these are tangible ways to tell them they can help getting counseling for yourself getting counseling for the patient ways to adapt to your house you know I had no idea I’d be 28 and be needing to get you know, a shower chair and all these things and so basically my book is a love story but the tips and the tricks of how I navigated all the illness part and then how I navigated all the widow part the anniversaries, the holidays, all those first all those feelings, and it’s very gritty in that I don’t it’s beautiful, but I don’t sugarcoat anything you know when I one day I may be like, oh Today’s a great day and the next day I’m like again so grueling. So it’s really unique and that this is the first of its kind memoir self help how to merge the narrative and the realness of the journey with the medical aspect of how you do both so I put all that together and it was very much a labor of love and a lot of PTSD but I’m really proud to have it out there’s there’s nothing like this to help people navigate it.
Victoria Volk 11:13
it’s a lot yeah thank you. So how many years ago was this now?
Rachel Engstrom 11:16
April 21st will be eight years
Victoria Volk 11:19
what is life been like since
Rachel Engstrom 11:22
so it was really hard. It was really hard at first just for fun just for kicks I took classes to get a certification and grief counseling because I wanted to know about grief the process all of those things learning about you know ambiguous loss of suicide and you know all the different kinds of grief what people go through my bachelor’s degree is in anthropology so just culturally, it was fascinating because I was part of this culture I knew nothing about it’s like literally being dropped out of an airplane into a foreign country you don’t speak the language you don’t know anybody you don’t know where you are you have to start over it was it was really really difficult working three part time jobs to try to pay for house like I said, I thought I’d have someone helped me with lost a lot of friends not because people didn’t care but I think they didn’t know how to adequately help and kind of like you have you know, when you have a job, you have your work family of friends there and then you leave and then you’re like, Oh, you know, I don’t really talk to them that much anymore. The really hard part is about going through something that’s catastrophic is your friendships, your relationships have been flow and change that way as well. I purposely with a lot of intent, stepped away from the cancer world, the illness world, all of that for years, because it was just too close too hard. You know, there were movies that came out like I remember like a fault in our stars, a couple different ones where people were like Rachel do not watch those do not even don’t even touch it. Those things are really difficult. My brother who’s 14 years older than Wayne told me in the very beginning when he came right before Grayson got sick or excuse me when he got sick, you know, you you can choose to be better or better. And I wasn’t always better. I have a chapter called bitter Betty. But within that I had I had to I didn’t have anyone else that I was responsible for besides my pets, besides me, so I had to know that Like it or not, I had to reboot This was my new life. And within that I chose to surround myself with positive people. I had a couple of very long term friendships that ended up not appropriately supporting me and being very judgmental and toxic that I had to cut out of my life. Just a lot of growing pains of being this new person this new role this not definitely not asked for a role. So navigating all that was really tough navigating just having enough money to afford the house and everything that was just insanely tiring I worked for a year and a half I worked three part time jobs to with autistic children, one with the lady with multiple sclerosis, running all across the Twin Cities and be like five or 600 miles a week navigating all of that I forgot to say six months after my husband died, I had had so much pain I could barely walk so I had a hysterectomy so then I gave up the ability to have kids which was another huge loss. But then you know later on victoriously I’m in target walking past like the tampon aisle and just like so excited. You know, it’s the little wins. But three months after he died I actually went to Alaska for almost three weeks by myself took a cruise was always like, you know, I’ve seen the Titanic. Tell me which well I well you know that they’re safe these days. I will never go on one. But I also didn’t think that I would be a widow at 31 either. So I gave myself space and time to see nature all these places you can only get to by boat plane Things like that. So it was a lot of a lot of trial and error. Over the years, I had met my husband when I was 19. So dating again in my 30s wasn’t sane, I got her, I got my heart broken, I was naive, I was stupid. I didn’t make the smartest choices sometimes. But I was I was just believing the whole time that God had a plan and like footprints, I wasn’t going to be dropped, you know, the second set of footprints in the sand. And that’s ultimately what carried me through and then also finding out surrounding myself not only with appropriate people, but you know, funny TV shows uplifting music, things like that, because there are a lot of really sad things out there. I didn’t always Excel taking care of myself. So those are some learning points. You know, when your spouse dies, you don’t want to sit around and eat salads, you want to eat cake, you want to eat pizza, you want to eat things that necessarily don’t fill you up with endorphins that make you more sluggish. But you do what you need to do. So in time, things got a lot better. And I don’t really speak about love life or anything except in my book. That’s my one disclaimer, you have to you have to read it because it’s at the end of the book, that’s kind of my happy ending. But what’s truly incredible to me is where I am in my life now. I’m, I have Besides, it’s hard to articulate this sometimes without feeling like offending people. But it’s true, like losing your parent, losing your sibling losing your grandparent, those things are so hard, they’re so hard. But the only thing I could equate with losing a spouse to would be how I can’t imagine losing a child. But losing a spouse is definitely not planned, especially as young as you know, I was 31 he was 37 so it’s very, very tricky to find adequate support and those types of things because when people say oh, my mom died or my my whoever died I I understand you don’t understand you really don’t understand it’s a different kind of grief. It’s more complicated. It’s the person that was in your house every day. You know, even a year after he died, I would look at the door and expect him to walk through it. All those types of things. So what’s incredible to me is that I went from being the saddest of the sad not able to get out of bed. You know, my reproductive organs are have been taken out of me my my hope of being, you know, a mom and all these different things and my husband’s gone and whatnot, that I went from there to writing a book, despite how painful it was writing a book and now speaking about the positive things I focused on the positive things you can focus on. It will be over by the time this is aired, but right now in the state of Minnesota, I am running for a woman of the year trying to raise $60,000 for blood cancer. leukemia Lymphoma Society did so much for me I did two half marathons walking them I’m not a runner, two half marathons walking that my dad won the year after he was diagnosed and one the year after he died, so in 2012 and 2014 and within that I found friends for life people that backed me people that supported me. And if I can get $50,000 I can get a grant and his name. And you know, I’m just I’m pumped to help people because as great as advancements are, every three minutes someone’s diagnosed with blood cancer every nine minutes someone dies from blood cancer, one in five people are going to get cancer in their lifetime. 80 It’s the number one childhood blood cancers, typically acute lymphoblastic leukemia, which is the type of leukemia my husband had, which usually children get or elderly people get 80% of childhood cancer survivors of this have catastrophic, like chronic health conditions, whether it be so my husband a year after he was diagnosed, he’s 36 looks great, you know, full head of hair, he’s super healthy. You know, no one knows he has cancer if you saw him, the steroids that he took for the first part of his treatment had rotted his hips to the point where there was a crack and it was the hip bone was falling out of the socket. So I have another friend that his son, or excuse me his that I met while my husband was actively dying. This person I met because he was he was so nice. It was a friend through a friend and he gave me money to stay in the hotel across the street because his wife had died five months before that, when his twins were three, and then three years ago when the twins were nine. I’m one of them got diagnosed with the kind of blood cancer. So this little he’s lost his wife. Now one of his two sons has cancer and he’s getting the little boy got really, really sick, his name’s Jake, he’s an insane warrior. Now he’s fine, his treatments are done, but he’s had to wear leg braces, because his legs are just his bones are you know, so there’s so much that’s amazing like the Leukemia Lymphoma Society has cutting edge research which actually informs other forms of cancer, their treatments and things are helping all forms of cancer. So it’s not just blood cancer and trying to get funds for. But the side effects are awful. We can acutely treat them when they’re happening and get you into remission, but the side effects are not quite there. So I feel really privileged and proud to be able to do this in honor of my late husband because he did these extra bone marrow biopsies donated his body to the University of Minnesota, he wanted to help people. So in a way I’m really proud to be able to have him live on through my story live on in this way. And this usually does not make me cry, but I’m just really excited. He would just be pumped to know that I’ve turned my life into advocacy in his honor. So that’s where I’m at today.
Victoria Volk 21:06
How about you tells us a little bit about him.
Rachel Engstrom 21:09
Oh, he was funny. So his name is Grayson and he was just like, gosh, golly, nice to the point where he’d say like, I’d hand them something and you’d say appreciate it. Maybe like what is so nice. He had he would ask the nurses like can I trouble you to get me something and they would like fall over laughing like it’s our job of course we’re going to help you. He loves New Order in the Pet Shop Boys and techno music and going with his best friend oh and for craft beers and discovering breweries and different things and from his best friend that I spent a lot of time with after that I was friends with anyway but spent a lot of time with after Grayson’s death he’s like he would just have any rolled his eyes when he told me he’s like he would just talk about you all the time. It was just all the time and you know, we really were the best of friends and we had what I call Space Age marriage where we rarely ever fought granted we didn’t really see each other Monday through Friday because he was working. But you know, when we did have arguments, it was over piddly stupid stuff and I was in my 20s having those growing pains and whatnot and as he works nights you know we didn’t have a dishwasher in our little apartment and I would want him to wash his dishes but he couldn’t wash them at night when he got home late at night because the kitchen was by the bedroom and it would have woken me up and then he was a serial procrastinator so he would be so tired he’d get up late you know work and then he’d get up at like one 130 then have to work at three so I just passively aggressively would stack those dishes on a cookie sheet because they were his but um he was just a joy he was a lot of fun everybody loved him the nurses told me they fought over him you know who that they had everybody’s index cards and patients in the room who had who when they would fight over who got to take care of him and you know I would bring blankets and a lamp and you know different things to make the hospital room like a little home and they would say oh lovebirds are in their apartment and you know things like that so we just made the most of it and despite him being sick we actually were given the gift of time you know that we hadn’t had our entire time together Monday through Sunday being able to spend time together and we’d have sleepovers and I’d be on my little hospital cot on the floor and he’s you know two feet above me and we’re holding hands you know watching movies and stuff like that but he was just a really good guy and I know that you know with from what I’ve learned, you know, different marriages, different things, different relationships. You don’t always get to have that nice story and closure where there’s a death You know, you’re left with you know, what was or I wish I would have said or I wish you know, I did have what it could have shut us but not in big ways. Not in big ways. You know, I felt guilty for a couple years because while he was sick, he would always want me to come snuggle with him on the couch and I’d be across the room on the other couch just insanely tired, exhausted on the couch and not wanting to move he’d be like come snuggle and I’m like a little while last thing I want to do I’m so tired. So I feel bad because I’m like he wanted that and I could have done that. But besides that I really don’t have any regrets. And you know, I asked him a couple days before he died. He was awake for a couple minutes just his eyes were barely open but you know, I knew it and we had a health care directive and everything but do you trust me? Do you understand what’s going on? Do you understand what’s going to have to happen and you know, he shook his head yes. And ultimately I was just prematurely obviously in my head I know that I’m you know, devastated. My world’s been thrown a grenade but While I was while my mom and I are waiting in the snow for my dad to pick us up, after I’ve left the body of my husband upstairs at the hospital, I just have these immense feelings of relief, because he’s not in this diabolical pain. He’s not going through horrific things anymore. That wasn’t really him anymore. Anyway, you know, it was just what was the it was unfortunately, like, you know, you change sounds like a really awful example. But you know, you when you get new carpet in your house, and you can go look at samples and there are those remnants, you know, he was remnants of who he was, that’s what was left the last few days he had given it his all he had fought so hard. I had confirmed with the doctors many times, especially the day he died, you know, there’s really nothing else they can do. And within that, I had the peace of knowing in the grand scheme of things. It didn’t make sense why he had to die. But biologically, his body just gave out. And, you know, God loved them. He did the he did the most that he could, and the love that I had for him and that he had for me, ultimately helped set me on the path of who I am today.
Victoria Volk 26:12
Was hospice care, never talked about?
Rachel Engstrom 26:16
No, because he was, um, so it wasn’t a necessary thing to have because he was in the hospital. So he left our house on January 21. He died on April 21. So it literally 90 days, because it took 60 days for his stem cell transplant to take for the bone marrow transplant, and things like that. He was like in the cancer ward. So he had that high level of oncology care specific for what he was going through. So I mean, I was assuming I was pricing like walkers and stuff like that, you know, I was thinking because he’d been to rehab and things like that I was thinking that he was going to come home and I had someone asked me a couple weeks ago, on a different show, like Did you really think that he was going to be fine and get better? And I was? I said, Yeah. And she said Why? And I was because he we were so young. You know, when you’re 31 and you’re 37 you assume you know you are unbreakable, unbeatable. You feel like you’re a superpower, you have the whole rest of your life in front of you. So I really did not I, when you’re the caregiver, or the spouse, or the main person caring for someone you don’t, at least in my opinion, you don’t get the luxury of believing that your person is going to be anything but fine, because you’re the cheerleader, you’re the you know, manager, the captain, the rah rah, we can do this of the ship. So I really until they told me I’m sorry, on the 17th I really thought that he would make it. And then at that point, because he was in the ICU, that was the adequate care he needed to take care of him.
Victoria Volk 27:55
I had Dr. Chris Kerr is the author of death is but a dream. It’s all about end of life experiences. And he has done extensive research on the subject. And he’s part of that docu series on Netflix called surviving death. And Episode Five. And you might find that episode interesting just because he talks a lot about the medicalization of dying. Hmm. So that’s why I was kind of curious on the hospice aspect of that. Sure. So what what are some of the things that I know you kind of spoke to like the some friendships fell away, which naturally, often happens with grief? But what are some of the things that were helpful to you, that people shared with you or said, and some of the hurtful things too?
Rachel Engstrom 28:46
Oh, yes. Well, I know how you feel is really hard. I had a lady that she was she was very sweet, very well intended. And she was a lady in her 60s, from church that helped do a fundraiser different things for me, but she would come and she, you know, I never let her in my house because I know she never really, she would stand on my porch and come and check on me and different things like that. And she kept telling me like, Oh, I know how it feels. I know what it is, you know, I’ve been there, done that. And she told me how she lost her mom. And she was saying she was a widow. And I’d be like, Oh my gosh, I’m so sorry, to the after like four or five of these visits. It turned out like she was like, Oh no, I’m married. It’s just my husband volunteers at church so much. I feel like a widow and I was like, Oh, just like I just wanted to slam the door on her face. I think the toughest thing. I had someone really close to me in my life. Tell me after about six months, just just decide to be happy. Just like pick a day decide to be happy. I think it’s really tough when people don’t realize that grief doesn’t have a start and end date. It’s on your own timeline, especially with me Every buddy’s grief journey is different. The circumstance of death is often very different. You know, you could put 10 people in a room and they all have different ways someone died. Mine, you know, being able to be there with him, like I said, For me made it a lot easier. And what was interesting is his, his pa is working, I think of it. What the acronym is, physician’s assistant, who was was like junior doctor. She was the one that after he was unplugged, and everything, you know, I lay down next to him and covered, she covered us up and I’m, you know, I laid there and we did an hour for his heart to stop. She said, Give me your phone. I said, Why? And she said, Let me take a picture. And I said, No. And she said, Yeah, you’re gonna want this. And she was right, because I wanted to look at these horrific pictures of what he looked like to really get and formulate, that’s not him. He had to go. But yeah, it’s, it was just really interesting to know and see what it was for me, versus what it was for other people. Being part of those widow widow groups online, different things like that. You know, it’s, it just sounds. I’m having a hard time articulating this because it just sounds very odd. But like, there was a woman in the group that her husband, apparently she was like, barely five feet tall. Her husband came home from Afghanistan. And one day, her 10 year old son found him hanging in the garage. And because she was so short, and he was already like five, three at like 10 G. They were trying to get him down. So she had her 10 year old son cut down dad. And it’s just there was someone else that it was her husband she knew he was really sad, but he she was like sitting on the front porch. And she’d been out there maybe like 510 minutes and her husband came out and said, Hey, come, you know, I’m going to take a nap come lay down with me on the bed, she found out. After laying down with him for like 20 minutes, she thought he was taking a nap underneath, like the pillow or something like that he had taken a whole bottle of pills. This is another soldier that came home. So he had died. And she had no warning and she knew nothing. So listening to those things, it made me feel better in people’s grief. And that sounds awful. But it’s like you compare your situations and those things that I just felt so extremely grateful to have been with him. And I mean, I had no words for these people. These are the most catastrophic, tragic, horrible things to happen. And when people are trying to tell you, you know, you need to be happier, you need to move on or you need to do this. There are a lot of people are really well intentioned, but they and they want to help and they don’t know how to help. And that’s what I’m trying to do with this book. Whether it’s you or your family, or a friend or a friend of a friend or whatever, I have ways to talk to people ways to help people ways just to be more sensitive, because grief is such a taboo thing that so many people don’t know how to talk about, I think the most helpful thing people did is just listen, be willing to listen. A few weeks after he died, I created a healing blog, which was like maybe 1/3 of the people that I had on Facebook where I would just kind of bleed on paper and write how I was feeling and be open and honest and I have all these posts as well in the book as they’re happening in real time. For me, it was just really helpful to feel like I was getting it out getting it out to the world I wasn’t holding on to it and just having people respond you know I’m here any time or you know, those types of things I initially thought of calling this book a few years ago and I thought of it how social media saved my life because it really is I mean even you know pre COVID we’re all very isolated we’re all very stuck to our phones and all of these different things but if you can feel that support those types of things, that was really helpful and it was really an eye write about this as well it was really hard for me to ask for help. You have a lot of pride and you know it’s really tough but you’re if you’re the spouse, you’re the you’re the caretaker you’re the team captain when your persons ill and you’re taking care of it and you are glad to be giving updates and asking for help because you know you can only do so much later when it’s you. I felt like a hamster that had lost my wheel but I was still running because I was so used to taking care of him and needed to know all these different things. So when it came to taking care of myself, it was a lot harder to ask for help and I ended up posting in this blog a few times like Will someone text me or call me or you know, someone came in took me for a walk? Yes, like a dog. Like she was like I left my dog inside and she was like Rachel, let’s go for a walk. You know, put on your shoes Come on. So I think the biggest thing I had to learn the hard way is just asking for help and knowing that it’s okay not to be able to do it all yourself. That’s the thing about being a caregiver is you, a lot of people show their needs. I say, I think I was about 5050, I would go to a concert every now and then or a friend would come for a cup of coffee to the hospital or whatever. But it’s really tough to realize, this is me now, nobody else is going to be able to do it. You know, you got to suck it up, you have to do it. And within doing that, ask for help. And like today, present day, I have alarms on my phone that I have set to check in with different people that are going through some tough things. So I don’t forget, in my busy life, checking in with them, like I had people check in with me. So those are, I would say the biggest takeaways and things that were said that were helpful and that were not.
Victoria Volk 35:43
I like that last tip. So what is one tip that you would give? Well, I think there’s a lot of tips actually rolled into that too, for other people hurting and going through something similar. What was the best piece of advice that someone? Well, you said your was your brother, like, right? Was your brother then told you to be better or better?
Rachel Engstrom 36:06
Mm hmm.That was a really good one. Um, what was really helpful to me is I had an aunt Tell me, like when I was like six months out, so I would have this countdown, count up, I guess you could say, so each month after his death, like the the day, to the you know, every month after he died, so it’s like may 21, June 21, I got more empowered and excited as the months would go by, because I would be just excited that I’m making it I’m surviving. And my aunt said something like, I was just like, Oh, you know, I wish I could speed this up to do that so hard. And she said, this is so fresh, you have to give yourself time. And I think people don’t realize. So I’m eight years out. And on his death anniversary, I used to have like, my sisters get together or I’d go to a friend’s house, like people that actually knew him, I would spend time, you know, go do something fun. This year. I’m just working. It’s been eight years. It’s, it’s I’m very displaced from him in that within writing about it so many times. But I’ve worked really hard to get here. Of course, he’s dear to my heart. The reason I’m doing all of these things, but I have successfully moved on. Of course, it’s taken a ton of work to get here. But I think that just knowing that, you know doing things on your own timeline, doing what works for you, is the best thing. Sir. I remember watching friends, and Everybody Loves Raymond and Frasier and things like that, and just belly laughing and being like, I can have joy, like really, really realizing these things about yourself, creating these new traditions creating these new things. That’s not, you know, the easiest thing to do, but, but doing that is great, because when you are six months, one year, two years, that’s still really fresh. And I think that having my aunt say that to me, let me know, every, every bit of laughter I had every like those were gems to put in my little bag of I’m making it I’m being successful, those things that it does take it’s like a staircase that takes and you don’t know where the top is, it’s going into the clouds. So I think that hearing that little bit of wisdom helped me rephrase my urgency because you just want to get it over with you want to feel better, you want to zoom into this place. And that’s not really a tangible thing.
Victoria Volk 38:41
I want to bring circle kind of circle back to like all these the different losses that you had mentioned earlier, and like the groups and stuff, and I think it’s easy for people on the outside to make assumptions to that. It was a you know, it’s a loving relationship, right? That Yeah, whomever you lost was a loving relationship, but I just want to feel the need to bring up that sometimes that’s not the case. And so especially if you’re someone that is going to say something like, let’s see, for example, they’re in a better place now. Yeah. I mean, just some of the things that people say it’s like, well, you know, you don’t even know, we don’t know what the intricacies of the relationships are like, right? We don’t know, behind closed doors, what how the relationship really truly was, we know people for the for what they show us, right? And so I just, I don’t know, I felt the need to bring that up that sometimes you can lose a spouse but it might not have been a loving relationship. They might be relieved, because they were being abused. Right. You know, so I just wanted to bring that to attention. I just felt like I had to I don’t know why. Yeah, no, it’s very true. So I mean, it sounds Like, grief has taught you a lot as it does for all of us. Even me, 30 years out 30 plus years out of my own losses, what gives you the most joy, though today?
Rachel Engstrom 40:16
That’s a loaded question. Well, my faith, my faith and knowing that I went through the toughest thing possible. And not that I want more, I’m hoping that, you know, like Sam about to be 39 I’m hoping that the bad stuff happened when I was younger, knock on wood on my fake wood dust here. But that, not that I want bad things to happen, but I’m like, Here I am, hear me roar. I’ve been through the worst thing ever. And since I’ve been through that, I know that I can get other through other things as well, you know, I had, I was eating like ice cream before bed, like, almost every night for a couple weeks, like a couple years ago. And I was sweating at night. And I didn’t know the correlation between like your sugar levels, and you know, then you cover up with covers that, that if you have that before you go to bed, it will make you sweat. And sweating at night is one of the signs of leukemia. So, you know, I’m panicking, like, oh, we’re going through cancer, and I’m going to the doctor, because it’s all these things that you know, from being there. And just knowing that you need to take everything, as it is, as the day, things totally changed. God says, you know, if you make plans, you laughs that those plans, you really can’t pre plan too far ahead. I think that that brings me a lot of joy of living in the moment, being there for what’s going on. You know, I’m a planner, but being able to step back and, you know, check myself on that. Five and a half years ago, I started a job but a new place that launched a new life for me. And two weeks after I started, I had dental surgery took antibiotics that ripped up my GI tract, and I had that I was diagnosed with IBS and a colon disease. Awful as that was because I was very sick for a couple years. I’ve become an amazing chef and Baker. I was good before. So that makes me really happy. Sometimes it’s really annoying because I have to make everything from scratch. But I really enjoy baking I really enjoyed cooking here in Minnesota was 80 of other day it’s been raining, but you know, I’m trying to get out and hike and do those things. And physically, I can’t do as much as I could with digestive things. And I still have endometriosis because I still kept one ovary. But you know, getting out, being outside, walking my dog, the same dog that she’s 10 she just turned 10 that’s been with me I talked about in my book since we got her as a rescue puppy. At four months old, my when my husband was first sick, all these little regular normal parts of life just make me really happy. And knowing that, you know, whatever happens, however, you know, I will gladly take IBS, Nicole and disease because I’ve seen the cancer world I’ve been in the hospital, I’ve seen it all. Being able to I feel like I just have this wealth of knowledge and experience of I’ve seen the worst, I’ve had the worst thing happen and knowing that whatever may come is as much as I hate the cliche, like it couldn’t be worse, it really could. And what brings me joy is to know that the experience that I have can truly connect me with people to tell them I am so sorry, it doesn’t make it easier, doesn’t make it prettier, doesn’t make it more fair, what you’re going through, it’s so tough. And I really I’ve been there. And you know, within this book, I just want to get it into millions of hands. Because when you’re in it, you really do you feel alone, you really do feel isolated. And you know, I’m just really proud of this book, by the grace of God to be able to give people some tips and tools on how to navigate it. And you can see, you know, I have this amazing love of my life and my life went Oh, and then it took a while but it went back up and now I’m I’m just excited to help advocate and tell people, I went through it, I’m okay. And you’ll be okay too.
Victoria Volk 44:21
Is that what you would like to scream to the world?
Rachel Engstrom 44:25
Yes.
Victoria Volk 44:26
That was what that’s you know, really the premise of my podcast and why I wanted to start it too is that the education piece that bring this topic to the forefront and talk about grief, like we talked about the weather make it just an open conversation that we feel we can have with each other and without criticism and analysis and judgment. And in that there’s hope and that’s why stories, you know, like yours and other guests that I have on my podcast. That’s the whole point is to show that there is hope Is there anything else you would like to share?
Rachel Engstrom 45:03
I don’t think so. I feel like I’ve put a lot. There’s a lot on the table for people to think about. There’s a lot on your buffet.
Victoria Volk 45:12
I think just their story people. That’s I mean, that’s how people see themselves is through other people’s stories. And, you know, we all agree that 100% there is no half Grievers. And it doesn’t matter what your losses it’s, it is hurtful to you, regardless of what it is and what caused it. And it doesn’t need to be a big t trauma loss to deeply impact you. And can we do can actually, can we speak to the whole because this isn’t the whole point of you being on but I do feel it’s a topic that actually as a topic has that has not been covered on my podcast, but knowing that you will not be a mother, how have you navigated that?
Rachel Engstrom 46:02
Yeah, um, so I actually looked into adoptions and different things like that. And it was just, I mean, it’s, I feel like it sounds stupid, but the expense of it was something that I couldn’t, I couldn’t afford. And I’m, you know, I’m an aunt, I have four nieces, one of them just turned 15 other day, they’re seven, almost 17 1511 and 11. And I actually was a professional nanny raising babies and things like that. You know, I see Gerber commercials, all that kind of stuff, it’s tough, I had to take some time off social media because I’d seen people with their happy couples and babies and things like that when I was grieving so I think abstaining from those things, it’s smart, because we all compare, you can’t not compare. I do still to this day, sometimes grieve it a little bit. But I also know that the amount of time and energy that I’m putting into advocacy to help other people I wouldn’t have that time if I had a child so this is my baby. Trying to help other people is is my baby so I’m okay with that.
Victoria Volk 47:13
And that’s a beautiful reminder too that the fastest way to help ourselves heal is to put that put our energy to others to feel better probably the quickest turnaround you’ll ever get to feeling better is to focus on others
Rachel Engstrom 47:31
yeah yeah
Victoria Volk 47:33
yeah. Thank you for sharing that.
Rachel Engstrom 47:36
Thank you
Victoria Volk 47:37
Sorry, I put you on the spot it just is something.
Rachel Engstrom 47:36
No no no it’s okay.
Victoria Volk 47:42
And I know I can imagine that people have said all kinds of things, well you can always adapt
Rachel Engstrom 47:49
you can adopt and it’s like I don’t think people realize it’s like minimum like $40,000 Yeah. And you know, I have several hundreds of dollars a month in student loans and you know, all these things it’s just it’s not easy and it’s very I mean the mental health aspect it’s very complicated as well with an adopted child and all of these things and I’ve already been through some really hard things so
Victoria Volk 48:15
Yeah, and I think to like people might assume if you don’t have kids if you’re of a certain age and you don’t have kids we can make these assumptions of well either you can’t or and if you choose not to whatever you know there’s there’s plenty of people out there that choose not to oh my gosh.
Rachel Engstrom 48:41
yeah, I’ve met a couple friends that don’t and it’s just it’s a choice.
Victoria Volk 48:45
and it almost seems more offensive to other people you know that you choose not to but yeah we project Don’t we? We project do Yeah, yes, we’re projecting society. But I hope that through just talking and having these conversations that we can just bring some compassion to and know and leave the assumptions at the door, right? Yeah. Thank you so much for sharing anything else you would like to share?
Rachel Engstrom 49:15
know so you can find wife widow now what? Victoria will have the links, but you can find it on Amazon and it’s in paperback you can actually write in the budget sheet finances all these different things. Or if you get the ebook version, you can actually click on the hyperlinks they will take you to all the different websites to navigate what you need to and then you can find me why footer well, Rachel, wife widow now on Facebook and Instagram and you can ask me questions, anything you want, I’m open.
Victoria Volk 49:43
Alright, and I will put those links in the show notes and you know, the organization that you are currently raising money for that will be over probably by the time this airs, but I will still put the link for that. If you want.
Rachel Engstrom 49:57
Yeah, you can still donate. I’m very Very needed.
Victoria Volk 50:01
All right. Well thank you so much for sharing your story
Rachel Engstrom 50:03
Thank you, thank you.
Victoria Volk 50:005
And remember, when you unleash your heart, you unleash your life. Much love.
Cancer, Child Loss, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast, Podcast |
Faith Wilcox | One Year to Live; Forever Without My Daughter
SHOW NOTES SUMMARY:
On a day like many others, Faith had taken her daughter, Elizabeth, to a doctor’s appointment to investigate Elizabeth’s knee pain.
What was thought to be an innocent visit to the doctor, who suspected the issue was nothing serious, quickly turned the family’s life upside down. After an X-ray and further testing, they learned Elizabeth had Stage IV osteosarcoma, a rare bone cancer.
They didn’t know it at the time, but Elizabeth had one year to live. The last three weeks of her life were on Hospice care. Faith would spend the next 10-12 years of her life grappling with the sorrow of losing her daughter before she felt like the grief had loosened its grip on her life.
The writing she had done while at Elizabeth’s bedside would later become a memoir. It’s about the story of a courageous and compassionate young woman and a grieving mother and family. Faith shares insights into things she learned at her daughter’s bedside, the many stays in the hospital, tips to understanding and absorbing the medical jargon, and all that came after.
What would you do if you knew you had one year to live?
RESOURCES:
CONNECT:
Victoria Volk 00:00
Thank you for tuning in to another episode of grieving voices if you’ve been here before And if this is your first time Welcome. Thank you for being here. And Today my guest is faith Wilcox, and her 13 year old daughter Elizabeth was diagnosed with a rare bone cancer that took her life. faith journey from grief and despair to moments of comfort and peace taught her life affirming lessons, which she shares today through her writing. face. Faith is the author of Hope is a bright star, a mother’s memoir of love, loss and learning to live again, which will be published in June 2021. Faith is also the author of facing into the wind, a mother’s healing after the loss of her child, a book of poetry. A longtime resident of Massachusetts faith leads a journal writing program at Mass General Hospital for Children for patients and their families designed to give participants the opportunity to express themselves, alleviate stress, celebrate victories, and honor their grief. And today, I honor your grief by having you as a guest. So thank you for being here.
Faith Wilcox 01:10
Thank you very much for this opportunity.
Victoria Volk 01:13
So let’s start share the story of Elizabeth with us.
Faith Wilcox 01:18
Of course, Elizabeth was a very happy, outgoing, often Silly child. And she was a star swimmer and the soccer player. And the summer of her seventh grade year, she started complaining of pains in her knees, and, and one knee and after a short period of time, we went to see the doctor, the first doctor did not think there was anything unusual going on. And then a few weeks later, we went to see a a orthopedic doctor who took an X ray. And then our world started tumbling in on us. I wish saved a call very soon thereafter. And we went into Mass General Hospital. And I didn’t know that we were going to see an orthopedic oncologist. But when we entered the room, that was quite a big shock for me. But Elizabeth fortunately, didn’t see the placard on the door that said oncologist, but we could see when we were in the room that we were in a very different kind of setting, because many people had prostheses or some apparent problem. So after three days of diagnoses and a small surgery, we found out that Elizabeth had osteo sarcoma, which is a very rare type of bone cancer, and it’s a very aggressive type of bone cancer as well, because bone cells are growing in adolescence quite rapidly. So it’s a terrible time to get the disease. Listen to this had nine months of chemotherapy and radiation treatments. It was a very, very rugged ordeal. She did extraordinarily well through the whole process. Of course, she did well in her spirits. But of course there were times that were so very hard, just very hard for her to lift her head off the pillow. But she always had an engaging smile. And that lifted my mood and lifted the mood of people under those around her who loved her. She had a great outpouring of support and love, which helps sustain us during these really difficult days. Despite all of the work that was done to help save her, Elizabeth cancer just kept on progressing. And she died in my arms one year after she was diagnosed. One thing that I really love to remember about Elizabeth is that about halfway through her treatments. When we were in the hospital, she would get in her wheelchair, wheeled herself down the hallway, go into rooms and speak with children who had no the arrived on the hospital floor. She would explain procedures to them in a way that they could understand. She took away a lot of their fear. She didn’t have very much energy at this point. And for her to share her meager energy really to help others was quite extraordinary. And parents would come up to me and say, we had so much fear walking into here but seeing Elizabeth and hearing her explain what’s going on has really helped alleviate a lot of our anxiety. We’re really so very appreciative. And this is part of what Elizabeth was she was only 13. But really she started to blossom into a young woman in this process and her compassion for others really grew. And that’s something that’s one thing that I’ve learned through her is that understanding how much compassion can help people in their times of need.
Victoria Volk 05:03
That’s beautiful. I think a lot about my own daughter, she’s 14 now. And she’s walking sunshine. very compassionate and thoughtful of others as well. And so my heart goes out to yours. Thank you, Elizabeth. And I do have a medical ish kind of background. And I am curious. Because actually, there’s someone in my community too, and I’m not sure if it was the exact same cancer, but I know it was a rare bone cancer, but they’re their child’s was in the hip. Was in the hip?
Faith Wilcox 05:40
Yes, It can do that.
Victoria Volk 05:44
I’m curious. When it was, when she was diagnosed, had it already spread so much that that mutation wasn’t even an option.
Faith Wilcox 05:56
They discussed amputation. But what happened is that Elizabeth, when she was diagnosed was already at stage four cancer. We didn’t. I didn’t know that for a little while the doctors would tell us information. Step by step, I think so that we weren’t totally overwhelmed. I mean, we were overwhelmed, but that I know, they wanted us to keep holding on to hope and there was a chance that she could survive it. But it had already spread like to her to her femur and into her hips and into her sternum.
Victoria Volk 06:42
After her while you’re going through this, I know from your information that you shared with me that you do have you have another daughter and so was she, like, how? How did you navigate that as a family that whole year?
Faith Wilcox 06:58
It was extraordinary, extraordinarily difficult. On top of all this, I actually separated from my husband then and went to live with my sister we were our marriage was quite fragile anyway. And I found that he was really not able to help us and provide the support that we needed through this very, very difficult time. So I was in the home with my sister and her husband and her children. So that was very supportive for my older daughter, Olivia. And Olivia and Elizabeth were best friends. They were only 18 months apart in age. Academically, they’re only one year apart. So they went on a school bus together, they played and had recess at similar times. I had lunch at similar time. So they were by each other’s side all the time. And it was absolutely devastating for Olivia to see Elizabeth grow weaker and weaker and thinner and thinner. And she did the best that she could, but it was so hard for her to because she was only 15 at the time. And she had started a new high school which was much bigger than her middle school. And I remember one day she came home and she looked really upset and she said Mom, kids are complaining that their hamburgers, overcooked mean, don’t they understand that there’s so many more things to worry about in life. And Alex, you know, really had been thrown in the deep end. And I did my best to support her. And fortunately my sister Susie did a tremendous amount as well to help support her. She was violets best bedside when she could be. But it was lisabeth spent a tremendous amount of time in the hospital as I did with overnights and again, it was supportive my sister, and I have one other sister as well. And family members that really helped Alyssa Olivia during this time. And it was very hard for me. I felt very torn. I felt that I wasn’t being as present for Olivia as I could be. But it was so critical that I was present for Elizabeth in the hospital. So I I had to make some very, very hard decisions.
Victoria Volk 09:17
I can’t imagine that’s a lot of loss and change for a child for you. I mean, that’s a lot at one time. How many years ago was this?
Faith Wilcox 09:32
Now, this was 20 years ago which and sometimes it does seem like that much time has gone by and other times I can just close my eyes and see Elizabeth and it doesn’t feel at all It feels like maybe a few years have gone by not not two decades.
Victoria Volk 09:49
I can resonate with that. I think a lot of Grievers can, it’s you know, it’s yesterday was 34 years my dad passed and you know, it was a different This year for me, it was just, I’ve gone through an end of life. doula training recently and Oh, just conversations I’m having on the podcast about end of life or about just stories like yours like it this year felt a little different for me. And, and they always do, right. I mean, whether it’s five years 15 or 25. It’s, we evolve with our with our grief.
Faith Wilcox 10:27
We certainly do. And there are times that I’m still surprised, there’ll be something, I’ll see a friend of my daughter’s or I very, in a very loving way got a card from one of her friends who had recently had a baby, but it it, I was thrilled for her. But I also felt so much lost because Elizabeth would have now been 33, and probably would have been at the point of being married and being a mother. And so that’s just reminds me about how much laughs there is when, when a child dies.
Victoria Volk 11:06
What were the ways that others I know you mentioned your sister, and how she supported you, and we’re there for you. And what were there surprising things that came out of this experience that you learned about grief and about yourself?
Faith Wilcox 11:24
I learned that, well, grief can surprise you. There are times that can be so much harsher. And there are times that you can start to feel a little bit better. And I learned some ways to find comfort and peace. And for me those ways were walking in the woods, with my dog or with my new husband, walking by the seashore. Spending time in nature I find extremely soothing. I also do a tremendous amount of writing. And I found that if I can express myself through my writing, even things that I never really wanted to say out loud, the process of putting them down on paper opened up my mind and in many ways sort of released my anxieties that I had. And I could also write about my hopes and my dreams. But it was a bit certainly was a process. And now I know that grief will stay with me. But it is no longer disabling. I can live my life. Now I remember Elizabeth with great joy and great love. And I can go out and I can give to others in the ways that I do in my in my daily life. So I found that grief changes you. It makes you more compassionate. And it makes you more aware of the world and others who are in need.
Victoria Volk 12:52
I agree. I think when you experience the depth of sorrow, and your loss is your loss, the most important loss is your loss. Right? That’s I don’t care what the loss is. It’s always going to be painful for the person that experiences it. And so that can be our greatest teacher or it can be our greatest debilitate her. And I know there’s no there is no timeline degree if there isn’t an I speak about this a lot when it comes to grief recovery. Time heals all wounds, you know, that phrase that everybody knows, is a myth. And but I’m curious in the time that it’s been since that that loss and that you all the change that happened? How long did it take you to pick up the pieces where you really truly felt? Like, no, I really am okay, this time, like I really do. I got this now.
Faith Wilcox 13:56
It took a long time, I would say more than 10 years. It’s hard to say exactly. But I would say probably somewhere between the 12th. And maybe the 13th year, I started to be able to interact with more confidence with people. It wasn’t that my confidence was lagging. It’s just that sometimes people would bring up Elizabeth or they’d bring up something and I would feel I would either feel hurt or I would feel like I was about to cry. And I didn’t want to do that and so many different situations, especially if someone didn’t know Elizabeth and didn’t know her life. So it really took me quite a while until I build up ways as I said that I knew that I could find some comfort and peace. I also had a lot of therapy along the way. And the therapy helped me tremendously. And I learned you know, I wasn’t alone in my grief and I learned that of other people. who had lost children or lost a loved one, and spoke with them. And I sometimes would speak with other people more as a, actually I was more as a listener, and they were speaking to me of their grief of losing their child. And I realized at that point that I’d come a long way because I could listen to them, empathize with them, and not have the same pangs that I did earlier. So it definitely took me more than a decade
Victoria Volk 15:31
In grief recovery too and I have to say this, because for anybody listening, it’s never too soon. And it’s never too late to address our grief. And I walked a woman through a loss she had only three months ago. And so when I think about my grief, 30 plus years out, and it was only like two years ago, that I really addressed mine, I’m thinking, gosh, over 30 years, or 30 years of my life. Hmm. I feel like if only, if only, and there was things that I tried in between and you know, but nothing worked for me, like grief recovery did. So had I said to you, within a year or two years, this will work for you. Do you think you would have been ready at one to two years? Or do you think you would have been open to that?
Faith Wilcox 16:30
I don’t think I would have had the confidence to say that, that some something’s going to work, something’s going to make me better. I always held on to some hope. But it was. Yes, if someone had come to me one to two years out, I would have said, you know, thank you for trying, but I don’t think it’s going to work with me.
Victoria Volk 16:52
So let’s unpack that a little bit. Because I really think that this will be helpful, not only for me to learn how to speak about grief recovery, but also for listeners, because I can’t imagine that pain of losing a child. First of all, I can’t I don’t even know what that’s like, and I’m not going to pretend like I know what that’s like, Is it because you feel like the depth of your pain, like just nothing can possibly just pull me out of this? Do you think that’s what it is?
Faith Wilcox 17:22
That’s a good way of saying the depth of my pain, it felt that. Like, a few limbs were taken off of me. It’s amazing to know, but there’s no word for a woman who’s lost a child or for a parent who’s lost a child. We have widow and we have widower, but it’s almost as though there’s no way to sum things up into one word. And really, our children are, are braided into us, we can’t pulling that out. It’s like pulling two sides of a braid at the same time. It’s very, very, very hard to do. So I think I was living my pain and literally having a lot of physical pain at the same time, too. I understand now that that how much pain I was in emotional pain and physical pain can go hand in hand. I didn’t understand it at the time. But I think that’s primarily why I couldn’t I couldn’t don’t think I could have managed early on.
Victoria Volk 18:32
No, that’s fair enough. I mean, I’m, it’s like the suffering is overwhelming. And as I’ve been talking about recently about suffering, it’s I had an interview not that long ago, and I was talking about suffering and what I shared was your suffering anyway. What if you can suffer and put one foot in front of the other? And I feel like that’s maybe the best message I can give others right now who feel like they’re in this. Like, they’re just white knuckling hope and feel like just nothing. Nothing can take any of that pain away.
Faith Wilcox 19:27
They do like that concept that you’re in pain anyway. So why not? Why not try? Why not put one foot try to put one foot in front of the other? In a way you could say you don’t have anything to lose. Because you If anything, even if you got a whisper of relief, it would be a big help.
Victoria Volk 19:48
Right? Yeah, I wish I would have known you back then.
Faith Wilcox 19:56
Yeah, that would have been special too.
Victoria Volk 19:59
You know grief recovery has been around for over 40 years. Can you believe that? I can’t believe that like it’s, but it’s only recently in the last I suppose, six, seven years maybe that it’s kind of online and it’s gaining gaining more traction. Because before that was pretty much just word of mouth. But I just think of all the Grievers out there who, like you, just just not that you didn’t have hope, because you did, and your daughter taught you that right to never lose hope. And if we don’t have hope, what do we have? So I hope and move your feet. Right?
Faith Wilcox 20:42
That’s a good, that’s a good visualization for me.
Victoria Volk 20:49
So share with us, if you will about the writing, because you’re writing just for your own therapeutic. Write for just for yourself, and then it kind of then evolved into a book or?
Faith Wilcox 21:03
Yes, that’s exactly what happened. I started writing by my daughter’s bedside. She you know, you spend a tremendous amount of time in the hospital, and some time my daughter would be sleeping, or sometime it would be nighttime. Or sometimes our days and nights were so confused, I would write by day I write by night. And I felt that it helped me enormously express things that I kept bottled up inside, there are some things I just didn’t want to say aloud. But I could express them in writing. And I really found that I could write about many of my fears, I could write about my anxieties, I could write about how I was feeling or coping, I could write about how Elizabeth was feeling or coping, I could write about the positive things that came out the friendships that we had the family that supported us tremendously, the medical community, which was enormously strong and supportive, and very, very knowledgeable. And what happened over time, is I also wrote about the process that we’re going through, because there’s so many medical terms, there’s so much information that you don’t understand at the time. And even if you can write it down, just write down the name of the illness or write down the name of the procedures, then you can go back at a different time and say to your doctor, Okay, I understand that this is about to happen. But I don’t really understand why or I don’t really understand what this procedure entails. So just writing it down can help you kind of organize in your thoughts, rather than just be this flood of information. Your your brain can’t sort out that much information that quickly. It’s just impossible, especially in medicine, which is can be sort of like a foreign language. So it helped me ultimately it helped me process what Elizabeth went through, and understand it better. And in time, I would be able to remember through my writings, the good days, the good moments, and it helped me to remember them as I went back and I read them again. And as I started rereading my journals, I said to myself, there is a story here, there is a story of a loving, and brave young person who contributed so much to the world. And there’s a story of a mother standing by her child and doing the best that she can, given the circumstances that she’s in. And there is a story of grieving, and there’s a story of healing. And I thought, if I put my, if I put a memoir together, I hope that one day it’ll help people who are in this process of grieving and give them hope for healing.
Victoria Volk 24:03
About that, and I will actually put the information in the show notes for the book. So let me ask you this, because I recently, as I mentioned, just went through an end of life. doula training, which is a person who sits with someone guides them in hospice care, like helps is kind of the advocate and the bridge between the hospice care team and the patient and the family. And so was hospice. Never a topic of conversation. That’s me being curious again.
Faith Wilcox 24:38
Hospice was a topic of conversation. And my daughter resisted it for a little while we had she had finished her treatments. We very sadly knew what was ahead of us. And Elizabeth at maybe three weeks before she died, said sort of whispered to me that She was ready for hospice care. So hospice workers would come to our house about two times a week. And they would make sure that her pain medications were adequate. And they’d talk to her and make sure she’s comfortable. But it really was at the very end of her life, the very last day that hospice was enormously helpful. They would quietly come and go out of her room. And they just they’re calm presence was very, very helpful to us. And toward the end of their life, they gave her mom, they gave her oral morphine. Because her, her breathing was just slowing down enormously. So hospice was very helpful to us.
Victoria Volk 25:50
Did she ever speak have conversations with people that had passed before family members or anything? Again? This is me being curious.
Faith Wilcox 26:00
Do you mean did she connect with someone who had already died?
Victoria Volk 26:03
Yeah, like in her would talk about anything like she did.
Faith Wilcox 26:08
One day she said to me, Mommy, I saw George. And George was a friend who was our age who died in his early 50s. And George and his wife, were unable to have children and say, they didn’t literally adopt, but they almost adopted my two daughters, because they just adore them. And we had many, many happy days, having lunches together or going swimming together or hiking together with George and his wife. And when she said, Mommy, I saw George, I was floored. Really, really floored.
Victoria Volk 26:45
Was that your first ever experience with something like that?
Faith Wilcox 26:48
Yes, it was.
Victoria Volk 26:51
Did. I’m curious too. Did that bring you comfort?
Faith Wilcox 26:55
It did. It did. I thought. And George had a tremendous sense of humor. So I thought, well, if someone can, can bring her gently to the next place, who would be a wonderful person.
Victoria Volk 27:09
Just yesterday, March 31 episode came out on my podcast, and it was with Dr. Chris Kerr, who has been researching end of life experiences. And phenomenal episode, if you have not listened to it, it will. But it talks he talks a lot about the medicalization of end of life. And just in talking with him, and through the end of life, death doula training I had, it’s really changed my perspective on end of life and how it can be truly a beautiful, life affirming experience that can bring you much closer to your loved one than you thought was possible. Yeah, so I just wanted to share that episode with you if you haven’t listened. What would you like to screen to the world? In the past or recently in wish people knew about your grief?
Faith Wilcox 28:15
That grief goes on for a long time. And that there are days especially early on that people would get, I could tell uncomfortable being around me. And I would want to say to them, it depended if a how well I knew them. Just talk to me. Talk to me about Elizabeth. Talk to me about Olivia. Don’t pretend she didn’t exist. Don’t pretend that we just didn’t go through this huge ordeal. Because talking about Elizabeth would bring her back to me. And we could remember Yes, difficult times. We could also remember that happier times. Like let’s say when someone’s daughter was in third grade with my daughter and they used to play or have overnights remember her Don’t, don’t get so awkward around me that you can’t speak of her.
Victoria Volk 29:09
It’s almost like that indifference. And the silence is even more painful than saying the wrong thing. Made exactly you know. And like you said, Let this be a lesson to you listening. anyone listening. just acknowledge the person share a memory of them if you don’t know what to say, share your favorite memory of that person or what they brought to your life right when that have been just brought you so much peace just to know how she touched each person that you talk to right?
Faith Wilcox 29:46
Absolutely. Because then not only do you go back in time and remember much happier times, you know that your child is living on through memories and someone who she touched in her life. And that’s, that’s a blessing.
Victoria Volk 30:05
I want to share this too because this brought to light something I touched on before in different episodes, but I think it’s important to bring up again and that as a supporter of a griever or someone who like a acquaintance or a friend that you know, you meet on the street who you know, lost somebody close to them, like a child, in your case, follow the lead of the griever right? So if you’re sharing a story, reciprocate that if the person if the griever like yourself if you’re feeling like you know, it’s not like you got to look at body language to I think, you know, if you’re, if you’re kind of closed off and you’re not, like opening up or not really talkative Well, maybe it’s maybe it’s not, you know, because I think people get afraid then to upset you as a griever. He like they’re afraid to upset you. And so, but I think it’s just follow the lead of the graver. And I don’t know that any graver would be upset about a happy memory? You know, I don’t know.
Faith Wilcox 31:14
No, I can’t imagine that. I think I think everyone would be happy to remember to remember something in their past. And as I say, remember how your child touch someone’s life,
Victoria Volk 31:24
Or to learn of a certain event or a certain thing that they said or a specific, like something specific that you wouldn’t know otherwise? You know? Yeah, I just think sometimes we just fear just keeps us so closed off to connecting with, with ourselves and with gravers that, you know, we meet or Grievers that we know or what have you. So what brings you the most joy these days?
Faith Wilcox 31:59
What brings me the most joy is being with family in my new marriage. I also have grandchildren, and they bring me a tremendous amount of joy. I love I love being with children. I love watching their silly antics. I love watching how they grow, and they learn and they’ve learned about life and see their bonds growing with their family and their friends. And how they sometimes start to step out into the world. And then come come back and and ask for advice. So I, my grandchildren bring me huge amount of happiness. And I also love to spend time with my daughter, Olivia, I love to walk in the woods, or walk by the sea. Just spend time in nature is very, very comforting and reassuring to me, I also love to garden, read and write.
Victoria Volk 32:59
That’s beautiful. Find What brings you joy, right? do more of that.
Faith Wilcox 33:04
Absolutely.
Victoria Volk 33:06
Is there anything else you would like to share?
Faith Wilcox 33:11
I think to be gentle with yourself. There are times that you could say to yourself, Oh, come on. Now I’ve got to be able to be ready to go out to dinner with friends. Or maybe I want to go to an event. Go watch a baseball game. Or sometimes you have an invitation and you think, okay, maybe now I’m ready. And then you hesitate and don’t go, it’s fine. Just be very gentle with yourself. If you’re not feeling up to accepting an invitation, it’s fine. Do what works well for you don’t push yourself into any situation that feels potentially uncomfortable. And your friends will understand. They will they might take them a little while to begin to understand but they will. And you can have good conversations with them about it. And through opening up the conversations they will they will begin to glean a little bit about what it’s like to suffer as I was suffering. And then once you feel a little more confident do that stepping out into the world. And no, no, ultimately it’s going to be okay is going to be very different than what you imagined. But life is good. And there are many ways that you can find joy in this world.
Victoria Volk 34:36
Yes, I believe that too. And you made a very good point in that you kind of coach people how to be with you. You know you kind of have to you might have to be the one as a graver to open up that dialogue in that conversation and to share what you need and to share how others can support you. I will add As a supporter of a graver, don’t stop asking, right? Don’t stop asking, Hey, do you want to go catch a movie? Just don’t stop asking. Even if it’s no 20 times. Maybe it’s the 21st time. You feel like you know what? Yeah, let’s go. But let’s just go Yeah, let’s just go I got this. Let’s go today, or go for a walk and you don’t have to talk. Right? Or you can just have someone walk with you.
Faith Wilcox 35:30
Yeah, absolutely. Just have someone be by your side.
Victoria Volk 35:35
Yeah, we overcomplicate stuff a lot.
Faith Wilcox 35:39
That’s true.
Victoria Volk 35:40
Yeah. Thank you so much for sharing your story. Is there anything else?
Faith Wilcox 35:47
No, I think I think I’ve shared what I was hoping to share. And I just, I thank you for this opportunity. And what people who are grieving to really hold on to hope is in time. And with counseling and with help, it will be okay.
Victoria Volk 36:03
Yes, with community we don’t, we don’t heal on an island by ourselves. And oftentimes, that’s what grief makes us feel like and that’s why my, the artwork for my podcast is me with a megaphone on an island, right? Because that’s how we feel when we’re deep in grief. It’s like, no one’s listening to me. And I feel alone and isolated. And that’s what we do. That’s what happens. Because, you know, we don’t know what we need, necessarily all the time. And other people are afraid to make us feel worse, or they do say the wrong thing. And that makes us feel worse, or you know, so it’s such a difficult thing to navigate. And that’s why I started this podcast to bring people on, who have been there, done that, and bring hope, because without it, what do we got, you know, so thank you for sharing your story.
Faith Wilcox 37:00
Of course. Thank you so much for this opportunity.
Victoria Volk 37:03
Where can people find you if they like to reach out to you?
Faith Wilcox 37:07
Sure, you can find me at faithwilcoxnarratives.com. I have a website there, I have a way to contact me or otherwise just simply at my email at faithwilcoxnarratives.com.
Victoria Volk 37:24
Alright, and I will put that information in the show notes. And remember, when you unleash your heart, you unleash your life. Much love.
Cancer, Cancer Thriver, Grief Stories, Grieving Voices Guest, Grieving Voices Podcast |
Anne Jacobs | The Road Less Traveled: 17 Years With Triple Positive Metastatic Breast Cancer
SHOW NOTES SUMMARY:
Anne is, what is called in the metastatic breast cancer world, an “outlier.” She’s lived with triple positive metastatic breast cancer for seventeen years. And, for the past seventeen years, she’s gone to sleep and woken up, not knowing when the other shoe will drop, and being out of treatment options.
What does this do to the psyche of the human mind? How does one even begin to comprehend the weight of this diagnosis and prognosis? So many unknowns and what if’s…the overwhelm and weight of it all…I can’t even imagine.
And, if you can’t imagine what this is like either, be a fly on the wall of my conversation with Anne, someone who has been white-knuckling hope for nearly two decades. And who has, somehow, managed to find a sense of peace with what is.
This is a podcast for all; to experience the fragility of life and the depths of joy found in the most mundane things – all within two hours. And, you don’t have to receive a diagnosis to feel Anne’s words for yourself.
Take all of her sage wisdom in and, as a result, be, do, and create TODAY as if you won’t have tomorrow.
RESOURCES:
CONNECT WITH ANNE:
Victoria Volk 00:00
Thank you for tuning in to this episode of grieving voices. I’m very excited about this episode today because if there’s any episode one episode that you listen to, I hope it’s this one because I just feel very good about that. The hope that this episode will bring to people. I want this episode to cause self reflection and introspection for you. As you’re listening. And after you listen, I want you to send this guest all your love and energetic hugs and vibes to her. Today’s guest, her name is Ann Jacobs, she was born and raised in Michigan and has been living in California for the past 37 years. She has a wife and mom to three adult sons. And she was diagnosed initially with stage three breast cancer in 2003. Less than a year after her treatment ended, she had a backache, that wouldn’t go away. And eventually was diagnosed with metastatic breast cancer, which is the same stage for those who live with metastatic breast cancer beyond five years are called outliers. And today and is going to be sharing her story with us. And I’m feel very blessed to have her presence here today. And thank you so much for agreeing to be on my podcast and sharing your story. Thank you, Maria, for having me here. It’s a I’m humbled, and I’m honored. I’ve enjoyed your podcast. So, it’s, it’s a, it’s a treat for me to be able to share with you. Thank you, it’s my honor, because we’ve had some email correspondence leading up to today. And it just, I didn’t even get my tissues ready, but I’m thinking I might need them. I just feel like the state of the world, collectively, each person in this world is going through something right. And you could have passed me on the street and looking at you, you can’t see her guests. But looking at you, I there’s nothing that says your body is just full of cancer right now. Like there’s there’s nothing in like, I don’t see that on you. And I just want to make that very clear to the listeners because we never know what people are going through. Truly. We never know. Let’s start with your diagnosis. Let’s start there.
Anne Jacobs 02:36
Um, well, the I found a lump in my left breast. I would by doing breast self examination, actually in November of 2002. And I have lumpy breasts. And I thought okay, well that’s interesting. I didn’t really pay any attention to it for for November in December it it was I couldn’t find it. It was obviously still there, but I couldn’t find it. And then in January, I felt it again. So, I called my gynecologist office and requested to come in to have a look at it. And then this sort of set the tone for my future cancer journey I you really had to push to get an appointment to I said, I have a lump in my left breast. I need to come in and get it checked out. And the schedule of gal said oh, you know, we’re not scheduling ups for three weeks out. I don’t I don’t think you understand what I missed. I said when she said well, if you want to come in, I see that you can come in for your annual exam and I said great. You know, put me in for that. So, I went in in about a week that my doctor felt it sent me right away to get a mammogram. It did not show up on the mammogram because which I did not know at the time, I had dense breast and tumors are hard to see in a mammogram. So I walked across the hall, got an ultrasound, it was there plus some other questionable spots, had a biopsy. And by the time I had a biopsy, there were three lumps that they biopsied. And then I had surgery. Fortunately, my surgeon when I met with him, he understood the importance of or the urgency of me getting in. He said we can get you in for surgery for three weeks. So that’s not going to work. I need to get in right away because I intuitively knew this was fast growing, which it was because when they did the surgery, and I actually had both breasts taken off. It’s called a bilateral mastectomy. I had five tumors, and this was all within a month, I think so I did that. I’m I went through treatment, which was aggressive at the time from March until August of 2003. And then in 2004, we were up at our lake in northern cottage in northern Michigan and I got a really bad backache. But my kids were little I’m running around, I thought, oh, I tweaked my back. So, I got a massage that seemed to help I came back home to California and the backache didn’t go away. So after 2x rays, it was determined I had cancer in my lower spine, in the L three l four l five area in my left hip. And then there is a questionable spot after some more scans or a questionable spot of a spot in my lung, which eventually turned out to be cancer. But in oh four, it was so small, they couldn’t biopsy it, they just watched it. So that that’s how my my metastatic cancer got diagnosed. They didn’t do scans after initial treatments, back then they do now and I think if they had, I probably they probably would have found that the cancer was already there, just based on conversations I’ve had over the years and things I’ve learned, but it wouldn’t have made a difference because if it was already there, I would have just started another treatment, you know, eight months earlier than later. So um, you know, sometimes you have regrets in life, but I don’t worry about that part. So that’s how it was diagnosed, and we just went from there, I’ve been on treatment ever since. And mine is called triple positive, which means in the, the cancer lingo, I’m hormone receptor positive, you can be estrogen positive, or negative progesterone positive or negative. And any combination of those, so I’m positive for both of them. And I’m also positive for it’s called her h er, and the number two and then a slash and EU, her to new and sometimes they call it just her to cancer. So those characteristics are important because that dictates what type of treatment and drugs that you can have to fight your cancer. So I’ve been doing that since 2004, very humbled and blessed to still be here.
Victoria Volk 07:31
Okay, did you all catch that? It’s 2004. It’s amazing, it’s really amazing.
Anne Jacobs 07:45
Yeah, it is, it really is. Every day, when I wake up, I say thank you for yesterday and thank you for today. And because I mean, truthfully, that the scary thing about the metastatic breast cancer is that I would be actually right now because I’m the drug I’m on is keeping me fairly stable, I’d be shocked. But it’s not out of the question. Like in six months, someone could tell me it’s, you know, riddled throughout your body now, because cancer has a mind of its own. That would be quite a surprise. But you that’s one of the things you live with is you just don’t know. Like, if or when the flip the switch is going to flip because there’s tragically there’s many there’s actually a lot of young young women with young kids who don’t live as long as I do. There’s some women that are living you know, 2025 years out so I hope to be one of them at some point.
Victoria Volk 08:48
Wow, that’s incredible.
Anne Jacobs 08:50
Yes.
Victoria Volk 08:51
25 Wow.
Anne Jacobs 08:53
It’s not It’s not like the quote unquote norm but it’s also it’s out there. So that gives everybody hope. You know, when you hear even for me, you know, I know when I talk to women who are first diagnosed in either you know, in person or online, that knowing that I’m 17 years out gives them hope so knowing that there’s someone who’s 25 years out gives me hope.
Victoria Volk 09:19
That’s incredible. So as of today, where’s the cancer at? you know?
Anne Jacobs 09:26
So, it’s still the I had radiation on my left hip which killed it. That’s what I say. Kill the cancer. My left tip at work. I still have cancer in my L three l four l five area. I’ve I’ve had radiation in that area as well. And then the spot in my right lung has grown to where I have. Well, I think I have about half of my right lung capacity. And it’s it’s It’s active in my right lung, but again, it’s stable. So, what that means for me is that it’s not it’s not growing in size nor intensity right now. And then my lower spine right now is what they call no evidence of active disease, or an E A, D, which means my last scan, you can see the cancer in the PET scan this PET CT scan, but the cancer activity is in the normal range. Meaning it could like if you saw it on scan, you didn’t know it was cancer, it could be just some other metabolic thing happening in your body. So, I’m very, very grateful it it basically it hasn’t spread from the original diagnosis front in 2004. Which, that’s kind of unusual, too. Because if it’s this is not, you know, usually the norm is it goes to your bones, and then to an organ and then it can go to your brain. So in the organs are usually the lungs or the liver. That’s not grounds in stone, so to speak. But that’s sort of like the normal, I would say, normal, or most common path. But there are women who have it in other places in their body as well. And then just in case someone doesn’t know, once you have breast cancer in your breast, if it travels to your lung, it’s not called lung cancer. If it goes to your liver, it’s not liver cancer, or your brain. It’s not brain cancer. It’s still breast cancer in a different part of your body.
Victoria Volk 11:47
Yes, I’ve actually learned that over the years as well, iit’s where it originated. What does? What does a daily day like? What is your day like? Today? Like? What is a typical day like for you, man, if I could talk here?
Anne Jacobs 12:06
Well, I have to pull. I wish I could have a typical day. One of the things I do, like I mentioned that when I wake up, I just I’ve been saying it for so long. So, this automatic thought of thank you for yesterday and thank you for today and then I kind of just take stock of Okay, what’s happening with how do I feel this morning? You know, it depends on what treatment I’m on, if that will allow me to function throughout the day. This one that I’m on right now it does. So, sometimes I can wake up and I’m exhausted. And I think All right, I’ll get up and brush my teeth. That’s all I can do. And I have to go back to bed. Some days, I get up, brush my teeth and say, oh, you know, I’m feeling okay. You know, I’ll get up, I’ll take our dog out for a walk. And then it’s sort of like checking in with myself throughout the day. There’s also days when I can be just going along and this happened about a month or so out probably before Thanksgiving, actually now. I was this was my baking day, I was gonna bake and I had everything out and I’m very messy. And something happened and I just, my body just went from I had to be on the couch for the for the afternoon and my husband came home and said, Okay, you’ve got flour and baking soda, you know, everything’s out. But I have to be prepared. I don’t have to be, but I am mentally prepared that I can make a plan and I have to call and cancel. So, it’s kind of a roller coaster. But my my day yesterday I felt good today I feel good. So, I you know got up I did take our dog for a walk. And then I took our little dog for a shorter walk. I had to do some paperwork at home. You know, trying to get my mom the vaccine COVID vaccine in Michigan, we’re all trying to do that. So worked on that. I cooked dinner. I was out in the garden, checking my plants. So it’s a very measured kind of time. The days are kind of measured for me as far as my energy level goes, I’m just checking in and I’ve learned over the years. Okay, if I have a big day on Saturday, let’s not have a big day Sunday. Just kind of a recuperation day, and then we’ll see we’ll see how Monday goes. And this the drug on mine now it’s called in her to its I’m handling the side effects really well. The last drug that I didn’t it was a true chemo drug. It’s called abraxane and I it worked really well on my cancer I kept it at bay kept it stable. But my quality of life got to be, I literally couldn’t even get out of bed to go brush my teeth, walk across the room, brush my teeth. So that was like an Olympic event for me. And then I said to my oncologist, okay, I’m, I’m at the fork in the road, I can’t do this one anymore. Let’s, you know what, what else? What other options do I have? So it’s a, it can be an emotionally exhausting existence. It can be, you know, I can run the gamut of emotions in one day. Or I can just get up and like, Okay, I’m feeling good, we’re just gonna power through, or I can get up and just feel good. And I don’t have to power through. So, it’s this balance of, what do I need emotionally? What do I need physically, spiritually? kind of combination of things. enough that that answers your question. I hope I didn’t confuse too many people.
Victoria Volk 16:10
No, absolutely. But I think that’s a wonderful point to bring across just for anybody, anybody to check in with yourself. Like you said, when you’re having a big day, Saturday, maybe Sunday is not, you know, you take it easy. And I think that’s a good lesson, just a rule of life. It’s like, why does it take us to have a cancer diagnosis? To check in with how we feel you with what’s going on with us.
Anne Jacobs 16:38
Yes, that’s actually that’s a, when you said that I kind of got it kind of got choked up a little bit. Because when I got the metastatic when we got the first diagnosis, it was okay. This is there’s a beginning to treatment and an end to treatment. So, we will, as a family, we’ve got these bookends of, you know, beginning and a start. And then when I got the metastatic it was just like, oh my god, you know, everything when the calendar went from, you know, volunteering, carpool, helping friends, you know, everything just gets cleared out. And I just, I said no, to, I had to say no to everything, because the cancer gave me the permission to do that, like you just said, and during that time, it was, was actually very freeing. I remember this, and I thought, holy cow. I was really doing probably too much before. I could, but you know, I loved volunteering. I love being seen people I love carpooling with the kids. I wasn’t doing anything I didn’t love what you know, for the most part, but when I had to clear the calendar, it just felt it felt very freeing. Like, okay, now what, what do we want to put back in, purposely put back in. And that was an unexpected, and what I call almost like a non cancer feeling. because like you said, you can do that in. I could have done that at any time. But there was a part of me that felt like, well, I should do this, or I have to do this. When I really just clear the calendar and say purposely, you know, we have a family. So, what do I have to do? What are the priorities? Just take that time to sit down and, and focus on that instead of for me? I’d say yes to everything that made actually a big difference in the non cancer quality of life, if you know world, if you will, so
Victoria Volk 18:50
To force you to live with intention?
Anne Jacobs 18:54
Yes. Because I do. Yes, absolutely. That’s perfect. Yes.
Victoria Volk 19:01
When you had then when that kind of hit you, when, when you had time to process some time went by and your kit, you said your kids were little, what was that grief that you experienced? And I don’t want to impose that you had grief, maybe you don’t recognize maybe you probably didn’t recognize it at the time. But in hindsight, maybe what were the things that you were going through and feeling having young children and having this diagnosis and, and not maybe being able to do the things that you wanted to do with them? Right, and maybe your career I mean, that obviously probably changed or, you know, whatever you were doing with your life up to that point and the volunteering, like you You couldn’t volunteer them. So, it’s like, free and at first but then when you had some time pass, what was what were you feeling when that hit you?
Anne Jacobs 19:56
I think you’re right. I didn’t look at it as as grieving or grief, I use the word loss quite a bit. You know, I and I had sort of different categories of loss you know, restart with the the first surgery, you know, I wanted both of my breasts gone my right breast, you know, was fine, but I considered it to be fertile ground. And I wanted to do everything I could to, ironically not have the cancer come back. So, I didn’t I didn’t have a problem with that, but I shouldn’t say but and it took me a long time to look at my scars on my chest. And it forced me to think about well, who do how does the breast define me? You know, as women. You know, my femininity, my sexuality, aesthetically, you know, you’re wearing clothes. So there is a sense, this was like a brief sense. But I know for some women, it’s a bigger sense, there’s a sense of loss there, which then sort of segues into like your, your loss of self. Like, this is who I was before, who I who am I now? And it forced me to? Well, I did it for I actually chose to just think about this, who, who am I at my core? Who do I want to be at my core? What is my core, because as you know, my mom was younger kids, you don’t have that I didn’t have that time, I didn’t really take that time. You know, I was, you know, put my, my son’s name in front, you know, Collins Mom, you know, you’re defined by other things. But you know, what defines me. And then, then I also had, like, the loss of being able to physically do the things I wanted to do. I stopped I was I loved running, loved, loved, loved, loved running, I just stopped running. Because my, I didn’t want to do any damage to my spine. Again, I know there’s women who have bone Mets, and they run in, and it works for them, which is I’m envious, but it wasn’t gonna work for me. So, I had to stop and I had to rethink, okay, how am I going to keep physically active because that’s important. And then, like the loss of future plans? We couldn’t plan you know, let’s take a trip to Europe next year with the kids? Well, that’s out of the question. We can’t plan that far ahead. And then there’s, there’s sort of the losses of you know, that nobody could see, like, like you mentioned earlier, if someone looks at me, they’re not going to know I have metastatic breast cancer. And that’s, that’s true. So so so many women, there’s losses that you don’t see that are you know that I’m camouflaging or I’m not talking about to certain people or maybe I you know, I had a bad day and I just I keep it to myself so and then on top of all of that, the last category a lot now I know that that is grieving. But when the big grief comes is you know, I’ve been here for 17 years is this what if this is like next year is 18? And what’s my time up and then I I can go down a rabbit hole kind of quickly, but I’ve learned how to pull myself out but it’s um, I see my kids get married, am I getting? Am I going to, you know, miss out? Are they going to have kids? Or, you know, what are you know, I’m not going to hear about their tennis game, or the walk they took or you know what happened at work today and I won’t be with my husband and I’ll miss out on you know, what he’s doing and sometimes I tease him I say you, you can’t you have to retire before I leave. So, we have time. But that’s when this that’s when for me. I get a huge sense of grief when I think about not being here and missing out on what’s going on with my kids and what’s going on with my husband and and that will actually I will feel emotionally that grief and then I also physically feel like I can if I’m if it’s a really bad day I will get lightheaded. I will get cold. I’ll physically feel cold. And there’s probably like a panic feeling that if I allow myself to get that far, but then I’ll pull out of it. out of habit. I use one of my father in law’s things that he told me he he’s unfortunately passed away but he was alive when I was I was diagnosed with metastatic cancer and he lived out here close to us and he said he looked me over I can still see his face he looked me right in the eye and he said and right now you’re here The boys are here Chris is here. You’re okay. And tomorrow you’re going to be okay so let’s just focus on this focus on that and so when I feel myself going down the rabbit hole I’m sorry I I remember those words and then that just pulls me back up because you know he he was a world war two veteran and he he had nine lives and he was very strong strong man that he went through some some horrific things. And so if I feel myself I can’t get out of it. If I’m down that deep I just think okay George Herrick I’m coming up I’m coming up you know to yes right now right in this moment I’m okay the kids are okay Chris is okay I’m here you know and then I start to look around Yeah, the house is a mess I don’t care but we have a house we have a car we have dogs I have you know my mom is still here my you know my siblings are still here my good friends and so I got run through this checklist and I actually touch each finger every time I say something and that usually will that will bring me back up and I’ll say all right, you know here we go. Let’s you know again taking stock Alright, what do you want to do next? Um, I feel like I’m rambling I’m sorry.
Victoria Volk 26:59
But as I wipe my tears
Anne Jacobs 27:02
Yeah, me too.
Victoria Volk 27:04
Thank you for sharing all of that.
Anne Jacobs 27:07
You’re welcome, I kind of feel like I’ve lost track of what the initial question was but oh the grief, yeah, it’s some you know, a lot of it’s just constant that some sometimes I’ll use the it’s like a picture in my mind if I’m walking on a lake that’s frozen over and the sometimes the ice is really thick to keep me from you know fall going down the rabbit hole sometimes it’s really thin and I can you know, I see that I see all that the what ifs you know what if the treatment stops working What if I don’t have any more options? You know, all that stuff? It’s right there I can see it. But I don’t allow right now I don’t allow myself to like fall through the ice because I probably at some point, I’m going to I don’t know that. But you know, I have stage four cancer. So, I hope I live to be you know what, there’s survivors out there who are 25 years out and they give me hope and I know that I give I’m 17 years out and I know I give women who are you know, less have less ears I give them hope so. I don’t know when my time is but I don’t want to fall down that I don’t want the ice to completely crack yet because I don’t it doesn’t have to crack yet. But with that said, all of that fear all of the what ifs it’s it’s always there. And then sometimes, you never know like a like a little drop in the bucket can overflow the bucket. And so, I have days like that as well. You know, some little thing can just be too much for me and I’ll completely crack and have a breakdown and I’m sobbing for 15 minutes, which I don’t mind anymore. My tears used to scare me because of the intensity. But now I know I just let it come out. It’s what do they call an ugly cry? I have you know I have those. But it’s I think for me dealing with the loss and the grief I’ve had to to reinvent myself and the lot you know, I have I guess I have these two categories, the losses. I can say okay, yeah, I couldn’t go back to work when our youngest was in first grade. But you know, for a year and a half I could work part time because I felt good enough. And I could do that or for you know, two years when I was on it. I felt good enough. I could volunteer for my kids lacrosse teams, you know, I could drive up to see our oldest in college and, you know, you know, spend a day with him. So, it was okay, I can’t do this. I can’t you know, I can’t run, but I can ride my bike and not in I can walk. Do I miss running? Yes. Do I watch other people run? And just go, oh, I wish that was me. Absolutely. But then the next thought is, oh, yeah, but I’m here and I can walk, and I can ride my bike. Because someday I won’t be able to. So I replace a loss, I try to replace the loss with something else. And that’s kind of what kept me going. I tried knitting for a while, when some of my treatments kept me in the chair for you know, six hours. And I have, if anyone needs 10, half finished scarves, I have them for you. So I would you know, I tried different things. when my kids were playing lacrosse, I took you know, I was on the field, and I took pictures of the team and then playing and I love doing that, you know. So try to find something. And I try to do this every day, I try to you know, find something that brings me a little bit of joy. It can be anything, it could be I’m out on a walk well, I’m always happy to be out on a walk. But I could see a rock that’s in the shape of a heart. Or if I’m on Facebook, and there’s, you know, there’s a gal I know who she posts pictures of nature, she was two of them. They just post these beautiful pictures of you know, places that maybe I can’t go And I’ll just think oh my god, that’s just the pictures beautiful. And that brings me happiness. So I’ve learned to find the little positive, positive things or joy, even in just the smallest. That’s not to say I don’t have my bad days. That’s not to say, I don’t there are days when I wake up and go this cancer, you know, expletive. And I get mad at it. And it’s like an unwanted houseguests. It’s never gone away and it’s gonna rear ugly head.
Victoria Volk 32:22
You know what, you don’t need my permission to cuss on here because I felt you’ve earned that right? I’ll check bar, I’ll check. I’ll gladly check that box. That it’s explicit, because I’ll say fuck cancer right along with you because it took my dad and I’m just like go somewhere else.
Anne Jacobs 32:48
Cancer has taken too many people I know.
Victoria Volk 32:51
That just might be the title of this podcast episode. Maybe I don’t know if I can do that, but I’m going to try, just for you. Just for you. I want I want to make a distinction on something you said because you mentioned a phrase that we say in grief recovery, and it’s replacing the loss because that’s, that’s, that’s a myth that we are. That’s a myth of grief. It’s one of the six myths of grief and that we learn to do that. But you’re not doing that you’re not replacing a loss. No, you’re you’re, you’re looking for an experience that of something you can do. And I just want to make that distinction because replacing the loss is something that makes you feel better for what you’re doing that to make yourself feel better. And for you, it’s what your body is capable of doing that day. So that’s the difference I want to share but your losses they that is grief because grief is by definition from the grief recovery Institute, a changing or and a familiar pattern of behavior. It’s anything we wish would have been different better or more. And it’s a loss of hopes, dreams and expectations. If there is any story that is the epitome of grief. It is your diagnosis and prognosis. and everything in between. From that bookend to the other. One back end to the other and what has been some of the unhelpful and hurtful things that you’ve heard along the way.
Anne Jacobs 34:30
It happened early on in mostly with with people who felt like they needed to say something they probably would have just been better off. Not to say anything or not approached me my kids were in elementary and middle school. So I was at school. You know your your kids are in school so you’re around more people now. You know they’re grown to her out working once you know finishing up college so you’re not around other parents as much So they would say, they didn’t understand the metastatic part of it, you know, everyone understands, oh, you’re going through cancer treatment in the beginning, and then your hair grows back and you start to become, you know, normal looking. And so then people adjust to that and say, Oh, she’s getting better. But then when you get the metastatic like you said, I don’t look like I have cancer. I mean, there’s days I do, but most days, if someone looked at me, they wouldn’t know. So they would say things like, Oh, you know, you’ll get over this soon, or you look great, you must be feeling really well. Or if I had to cancel an appointment, they’d get up set. And say, I’m sorry, I just can’t make it. I’m not feeling great today. So there’s a huge disconnect, because, well, you look good. So therefore you should feel good. So I went through that a lot. I learned early on how to deflect I had a sense of, Okay, here comes, here comes a mom that I don’t want to talk to she’s she’s just is coming up to me, because maybe she feels like she should. Because she caught my eye and she doesn’t know what else to do. She would start to say something. And if I felt uncomfortable, I would just kind of interrupt her and say, Oh, you know, how’s your kid doing? Or, you know, how’s baseball going? Or, you know, I would change the subject abruptly, just because I didn’t want to hear anything else that that person wanted to say, you know, I’ve, I’ve had some people say, you know, well, everybody can die. You can get hit by a bus tomorrow.
Victoria Volk 36:49
Are you kidding me?
Anne Jacobs 36:51
No. And I say well, and I never know what now I know. Like, what I would say say Well, you know what, I’m actually playing in the freeway.
Victoria Volk 37:02
Exactly right.
Anne Jacobs 37:04
You’re off on the sidewalk. You’re just hoping some random freak accident doesn’t happen. But like, I’m literally I’m in the road. But yeah, people have said that. And some, some people forget which, you know, they’re good, good people, and they’ll say, you know, are you done with treatment? And I’ll say no, I’m I’m never going to be done with treatment. I’ll be done with treatment when I’m dead. Oh, that may sound like kind of a harsh thing. But you know, I don’t say it in anger. I tried it, you know, um, I tried to cover it up with like a smile or you know, ease him into it, but still make my point. Because I understand like, who the neighbor five Doors Down isn’t gonna that’s not their job to keep track of, you know, what I’m doing everyone’s lives are so busy. So, people just forget. And so sometimes, you know, sometimes I’m very Matter of fact about that other times, I’ll say, No, I’m still on treatment, I’ll always be on treatment because and then I’ll explain it I have cancer that’s in my bones and in my, you know, long it’s never going to go away. And I just hope that I’m stable for as long as possible. You know, it just depends on the conversation of how how I feel about the person that my energy level if I want to talk about it. Because there are times when someone will say something really stupid, and I’ll take that time to educate them. Not that they’re going to remember in a week, but you know, maybe something resonates but there’s there’s a whole list of of comments that that that people say cuz they they just don’t know what to say. And sometimes it’s just okay did that, you know, they say How you doing? And I’ll say, yeah, I’m pretty good treatments going well, and all they would have to say is, you know, great. Well, I you know, I hope it’s working. The comments of Oh, but you look so good. Those are like yeah, yeah, yeah, I know, I know. Don’t focus on the exterior but ask about the interior. Like, how’s your day going so far today? Or if it’s if it’s a relationship where they can ask Is there anything you need? I’m not good at asking for help. And I’ll segue a little bit when I was first diagnosed, and my mom came out. My sister is out for a little bit and my mom came out for a while. My friends are thrilled that my mom was here because she answered the phone. Well doesn’t need anything she say yes, I’m you know, going to target. Yes, we need a new twin mattress pad needs some orange juice, if she would, and they were Wow, your mom’s so great, she’s you know, she’s letting this help you. Um, so then so then we just have like a here, here’s my debit card, just give it to them or, you know, give them cash when they get back, but it kind of goes back into when people say silly stuff. When somebody isn’t this is human nature, I think, you know, when someone’s sick, everybody, they rally around, which is humbling and overwhelming and just full of love. And then when the crisis goes away, then you know, people go on with their lives, some people stay, some people leave new people come in. And that’s, it’s kind of an app, I know, I’ve gone off on a different little topic, but that kind of is part of the, when people say silly stuff or stuff that hurts me, you realize, okay, well, I volunteered with this person, they were really nice. We were worked really well together. But now I’m in a different place. And she doesn’t want to be in my life, which is okay. And you know, she goes off and I and you could say there’s a void there. But usually somebody else will come in like, there’s a gal who knows and I was in my kids were in preschool, there’s another mom and she knocked on my door and she said, I’m doing your laundry. She came in, she did my laundry, folded it left and I’ve I saw her all the time in preschool, but I never saw her after that. And it was just one of those she’s you’d sit on the couch do not move, because she knew I would want to get up and help. She came in and left. And that’s just it was just the best thing for me that day. And so, I’ve, I’ve learned that I don’t have too many people in my life anymore that say the stupid stuff. So that’s kind of a blessing. And any if anyone says, if only my friends say, you know, you look pretty good. I know it’s coming from their heart because they’ve been through this journey with me, they know me at my worst. So that means something different than the superficial of, oh, you’re still in treatment? Well, you don’t look like it. You know, I know they’re trying to be encouraging but after a while, it’s just like, you know, heavy breath heavy sigh Okay, let’s let’s move on to talk about something else. Because they just, they don’t get it and I don’t want them to get it.
Victoria Volk 42:35
That’s like definitely having to discern and cherry pick. And it’s like this dance, a daily dance, I imagine with all the relationships. And if you think about, especially when your kids were younger, and you’re out and about and you’re doing things and lifeboat life was going on, and life was happening all the time. I can’t imagine like I’ve never taken count. But when I do go out and about in a mountain in the world, it’s like how many connections and interactions do we have in a single day. And I imagine that can get pretty exhausting. If every person is asking you or, or saying something insensitive and not really thinking before they’re speaking and you must get home at the end of the day sometimes and just be like, oh, gosh, like people exhaust me, like, I just want to stay home. Like it’s just easier to stay home. So how do you not isolate yourself and discern? How have you discern? Well, I guess you kind of answered that, like how you kind of figured out basically the people that have stuck around beside you since the very beginning? Is are the people that you lean on today? Is that true?
Anne Jacobs 43:48
Yeah, you know, last year, most of them were all in isolation COVID and the pandemic and for how this is good or bad. But for me, my my life interactions didn’t really change a whole lot because I’ve always had you know, I’ve always had to be careful about my immune system. And so I developed habits you know, before the pandemic of learning how to be okay in in the house by myself for extended, you know, my husband, he gets up and goes to work every day every day. It’s just amazing and but it’s for his mental health too. He couldn’t really work well from home. So his office is close by and. And then when our youngest went off to college, I’m here with our dogs. So I have to find ways to not feel too isolated. And there. There was a time when my immune system was super, super low. And it was like for everybody else last year with the pandemic of oh my gosh, we can’t go anywhere. But this was for me it was before the pandemic and I said ask my husband Can I just I’m going to bring my laptop and just sit in your back room and you know work on my laptop for like a couple hours because I can’t I can’t stand being home by myself and then some days it during that time and I wasn’t able to get out and walk he’d come home and be like Labrador talk Oh, we’ll go in the car for a ride you know roll the window down and and you know maybe we’d go to have it burger and he could you know he’d walk in and get his dinner because I couldn’t I couldn’t be around a lot of people so it was again I go back to you know, just finding joy something positive in the day that I can do where I you know, feel accomplished even though I can’t see people but with that, you know, I you know, I have a friend who I can just call and just start talking have a few friends like that and just start talking and you know, we already know what we’re talking about. And and that’s, that’s really helpful.
Victoria Volk 46:09
You gave a wonderful piece of advice that was shared with you about having today and you know, just focus on that but what is Is there any other pieces of advice that you’ve received over the years that maybe would be helpful to someone else who’s maybe been recently diagnosed or just for humanity in general?
Anne Jacobs 46:33
Remember to breathe that sounds like a very simple thing. But when when I was diagnosed with the metastatic cancer and I lost my ability to add just like okay, we’re gonna attack this what do we do so I I just remember I had to just take some time and actually feel myself breathe take those big deep breaths it was grounding in it you know kind of brought me back to center and it sounds you know really basic and simple but it is because I would find myself tensing up and taking you know, shorter breaths when I would become anxious so it just has a natural calming effect it did for me and my body.
Victoria Volk 47:24
I was just gonna ask Is that something you still practice and and what are some other things that you bring into your daily life that keep you grounded and have sustained you what do you what do you Yeah, as far as like you mentioned the breathing Do you do meditation? Is there anything else you’ve incorporated into your day?
Anne Jacobs 47:49
Yeah, I do the breathing. I usually do it in the morning when I’m I get up and I’ll make a smoothie and I take my supplements and I’m just sitting in I’ll just breathe just to start the morning off. I also listened to affirmation visualization used to be a CD but now it’s on my phone. I listened to it so much I can actually can just recite it in my mind and if that helps me kind of stay grounded to the other thing is that you know I’ll text or talk with friends and sometimes I’ll get distracted you know by whatever conversation we’re having and and that’s a good thing. I do stretches though that’s like for my more of my emotional kind of centering for my physical I do you know, like I said, I walk I’ve worked up to being able to do squats because one of the treatments might left my left leg muscle super super weak to where I couldn’t bend down to pick anything up. I fell over at the Rite Aid let’s trying to get something off the bottom shelf with that oh my god, how am I going to get back up so I’ve worked up to where now I can do squats with 10 pound weights. And it’s taken me I think, three years to get to this point. Weight routine with my arms. And then when I feel you know, good enough, I can be out in the backyard doing yard work. So that kind of helps me keep my physical strength up the affirmations, visualizations, it it really helps. I think, I don’t know if it’s your subconscious or it’s maybe like a little tape that’s, that’s running in the back of my mind. It gives me strength because I don’t know if it’s a false sense of security, which I don’t think it is because I believe that our thoughts affect you know, our emotions and our our approach in life and our physical well being as well. But it gives me the sense that I have control. I put that control in quotes because affirmation visualization is about my body in my immune system attacking the cancer and washing it away. It’s just it’s a really a there’s so many out there and I found one that spoke to me, that’s very, very helpful. The other thing and might sound kind of odd and I don’t do this too often as I I’ll sit down and I’ll, I’ll write letters I just wrote along with my mom. And whether it’s a quick note, or, you know, a long letter, I just, I like the feeling of the pen to paper. And I always have, but that’s something that kind of came back to me. It’s like the flowing of the words out onto the paper. And that’s different. For me, that’s different than just typing in a journal. I don’t do a lot of journaling. I know a lot of people do, because a lot of times I’m just the tapes are running in my head anyway, and I talking about it, and I don’t want to like write it down, I’ll write important things down. But the letter writing is helpful for some reason as well.
Victoria Volk 51:02
Have you written letters to the boys?
Anne Jacobs 51:05
That I have, I have written them, but not a lot for a while I have not written them about the cancer. But one of my sons asked me is if I would keep track, like when I get a memory from, you know, growing up or something, you know, college, or he says, will you write that down. So, I haven’t been very good about it for the last year and a half. But I have I have done that writing the letters to my boys is actually something that is on, it’s been on my mind. Because I know, when you read something, it’s on paper, it’s different than when someone tells you, I tell them, I tell all three of them. You guys are amazing. I’m humbled to be your mom; I don’t know why I got chosen. Because I just think the world of them, and I love them fiercely. And they know that but I also know that saying that, which is good to hear is different than having this tangible piece of paper with your mom’s handwriting on it. You know, it’s from her I had you know, I, I have a whole box of my mom’s letters and cards for you know, from the last third forever. And so when you open that card, and you see her handwriting, it’s that’s her, you know, I hear her words too, which are, you know, amazing. But here’s this tangible piece of her right there. So, you know, it’s, it’s a great question, because I’ve been thinking about that. I thought about it all January, January is kind of a little crazy month for me, but it’s still on my mind to do so. It’s really interesting. You ask that question. It was intuitively known.
Victoria Volk 52:46
When speaking of intuition, and I’ll just say this, too, that it’s something you can do and just put in an envelope and save for them.
Anne Jacobs 52:54
Yes
Victoria Volk 52:55
Give them later. You know, it’s not something you have to give right away after you write it. But speaking of intuition, I just Well, first of all, I want to just mention something with the breathing. I left I listened to a podcast episode with Lewis Howes, I think, and I’ll put it in the show notes as well. But he interviewed James Nester who wrote the book, breath. And he talks a lot about how the impact of our breath and really if and how this, the diaphragm is really like the second heart and you talk in just, it’s such a good episode. I’ve been so much more conscious of my breath. And in so many of us breathe through our mouths, which is horrible, horrible for us. I highly recommend listening to that episode. So I just wanted to mention that also, too. You mentioned about the visualization of feeling your body being like washed away like this cancer being washed away. And I thought of Lou Louise Hay, who wrote the book, you can heal your life and she talk a lot about like her she actually healed herself of her. It was a cancer of a reproductive organs, I can’t remember which is uterine or, or which but talk that made me think of that. But she talked about visualization of it literally being washed away. And so I want to talk about intuition piece because intuition played a huge role. In our own email correspondence. You mentioned your intuition, how you fired your first oncologist, and you just had this instinct within you. And so, I mean, it obviously served you well, then. But how? And you mentioned even the mind body connection, which I just I love that as well. So can you speak just a little bit to intuition and how that has played a role and how you’ve navigated this?
Anne Jacobs 54:59
So I’ve I’ve had instances of this intuition before cancer and the first one I had I think was I don’t know how old I was like I guess we could figure it figure it out but my my best friend growing up she she called she lived next door and she called in an answer the phone Of course it’s the rotary phone cord in one phone in the house and she said Guess what? And in my mind I said oh my gosh you know her brother and his wife you know Jan they’re gonna have a baby and I didn’t want to spoil it so I said what she’s Jan’s pregnant and I said oh my gosh, that’s great. And I thought well that was weird. And so I’ve had things like that happen throughout my life you know, I have a dream I had a dream about one of my nieces z years ago and she was on stage giving a speech and I can’t remember the whole thing so but I I don’t remember if I talked to her or I sent a text or a comment I somehow I contacted my brother and my sister in law and her you know, about her being strong and she can do this and and they said, well, there was some core there was some parallel activity happening at there and they’re there they don’t live near us they live states away and so that okay, well that’s that’s why I’ve had these little things. So I’ve learned to like tentatively, to sort of trust that voice in my head. But now cancer came what you’re what you’re talking about the way I got assigned, I just got assigned an oncologist and so my husband and I went and saw him and he was he did nothing wrong he In other words, he did everything right. He explained everything made sure I understood he wrote pictures on paper when I you know, he was great, he was kind he was compassionate. And during the appointment, my heart started beating super fast. I started sweating I couldn’t wait to get out of the room. And when we got out of the building, at the time, I really really swore and I said to my husband, there’s no effing way I’m going back to him I have to get a new oncologist and my husband who’s very he’s in tune with a lot you know medical stuff even though he’s not in the medical field He’s like, Oh my gosh, why this guy was great. I said, I don’t know. I just can’t have him so and i think i think i wrote in the email it was that mama bear feeling that you would feel for your kids where you will walk through fire for them that’s what I was feeling about myself that was brand new. I’ve never felt that before. So I had to I had to pursue it I had to get a new oncologist at the time there was only one Oncology Group that I had access to and I called them and said I need a new doctor and they were just oh my gosh what happened you know and finally I talked to however many people at the group and I just said Look, just label me the crazy cancer lady I’m really sorry but I just needed a different doctor and so the oncologist that they gave me to I just attribute him to saving my life early on because we work so well together and he he he worked really well with my husband he’s actually disappointed when my husband was the doctor appointments but I learned from him and he was the first on call just as younger and and my second one was he’s a little older will older than me I think but he taught me about myself and cancer he taught me how to approach cancer he taught me and this was just through interaction you know what questions to ask what I needed to be focused on what you know my my numbers were going up they weren’t going up that too far so we didn’t have to change treatment if they went up to a certain level then we would so I learned all of this stuff. And I just have to assume that I would have not learned that with the other one. So I trusted my intuition there and that has that kind of put the big stamp on my intuition so now even my husband like if I have I said honey this I just think we should do it this way. How’s it okay you know, I get it. And when you talked about the the mind body connection as well, you know, growing up I was always very active outside and growing up in Michigan, we had two acres of land our neighbors had three and four and five, no fences and we were just you just go out and play. I play soccer in high school. I’ve always understood. I’ve had this connection with my body like when it does this, then it means that I had to relearn that, specifically when it came to the cancer. But I’ve always, I’ve always had this sort of Mind Body connection. And I think it’s really important. Regardless, if you have, you know, a disease or not, I just think it serves you really well, if you can understand what’s happening, you know, with your body, like, okay, someone’s talking to me about something I feel really insecure about. And now, you know, my heart is beating 100 miles an hour, you know, why is that? What can I do to calm down, and those kinds of things happen to everybody throughout life every day. So the, I think the earlier you start with that, and it’s never too late. And it does take time. That’s why the breathing helps, it does take time to just like, Ha, sit down, what’s going on, you know, let’s tune in. And then I think that gives you an advantage to then serve yourself better than you might have, if you if you had something stuck in my head from something earlier. I don’t know if I said I think maybe it’s something you said. And I was talking about, you know, when people would come up and, and ask me questions, and I have a dear friend who she taught me it was okay to set boundaries, when you feel uncomfortable, or when it may not be socially acceptable. And she’s just a she’s an amazing woman. And she would say, yeah, we, they go to see your daughter play a game and depending on how they’re they just took care of themselves, maybe they sit, they didn’t sit with everybody that day, they’d sit farther away for and I would just, she taught me It’s okay to say no, she taught me It’s okay to take care of yourself. Even you know, even with family members that you got to pay attention to what’s happening inside you, and then make a decision of what how you want to move forward. So those things that those types of interactions I’ve had with people in friends have have balls bolstered Sorry, my confidence in my intuition in that mind body connection to say, yes, it is okay. And I’ve learned also over the years, when I haven’t listened to my intuition, then I think, ah, shoot, I should have listened. So it’s a try, you know, for me, it was a trial by error as well, you know, like, Okay, I get it now when the, the thought or the feeling comes up, I just go with it. Now talk about it to who, you know, if it’s my oncologist, like I did that. And the most recent one was when I, I started this new cancer drug, and it’s, I’m also taking a an infusion. For me, it’s immunoglobulin. But it’s an infusion, it’s called IV big and it’s to bolster my immune system, and I was getting this new drug and that one, either the same week or a week apart, and I was miserable, just miserable. And I said, You know, I can’t do this, can we? Can we, like, separate them by two weeks, just to give my body a chance to, you know, catch up, and that’s made a world of difference now. Like, I’m fine, after each no more, you know, relatively fine. After each treatment. I don’t feel like I’ve been hit by a two by four. But that was from, you know, years of listening to my, the thought comes up. Oh, okay. I’m gonna pay attention to that. That Mind Body connection of you going through treatment? How do you feel? And again, this doesn’t have to be treatment? It could be, you know, you have to give a presentation somewhere. Well, how, you know, I get stressed out, what can I do to calm myself down? So if you take that time to learn about yourself, I think it really serves you well, whether you have cancer or not, but I do start with the breathing.
Victoria Volk 1:04:11
I love all of that. All of it. All of it. All of it. And I know I briefly mentioned to you or email about how I’m a Reiki Master?
Anne Jacobs 1:04:19
Yeah.
Victoria Volk 1:04:20
The energy healing work and I’m just curious. Have you ever had a Reiki session?
Anne Jacobs 1:04:27
I have not. There were years ago, I was going to and then probably something. I’m sure it was, you know, something happened with me, and I couldn’t. I couldn’t go through with it. And then, um, you know, when you mentioned I thought, oh, I should I should look into that I have. I remember at the time I was asking around and I finally found someone that was recommended and I felt comfortable with but so I’ll have to start that search over but I haven’t,
Victoria Volk 1:04:59
They don’t, they don’t, I’m right here. You got a hook up.
Anne Jacobs 1:05:08
Yeah, yeah I will take advantage of it yes after after the podcast but yeah it’s it’s kind of it’s come back around and when I read that on your in the email, oh I should revisit that.
Victoria Volk 1:05:23
I yeah I bring that up because what you all shared and because I didn’t understand that concept of how our body speaks right until I made the first of all in grief recovery after going through grief recovery I made the connection of how grief was manifesting in my body and in my life and tying that to grief that’s definitely what is going on with us internally emotionally and like you said our thoughts is reflected within our bodies and our body speaks to us it’s just we do things to band aid and feel better we might drink or we might do other things that just kind of enable us to numb out and that only obviously does more damage and then we have shame and and so compounds right and so I love that you brought that up and I just want to bring just highlight that in that it again Why does it take a diagnosis for us to make that connection? So, this leads me to the question of Have you ever found yourself just incredibly frustrated by people maybe close to you or in your life or maybe acquaintances or people that kind of maybe complain about this that or the other thing or or aren’t taking care of themselves? That ever like have you ever found yourself like just really just frustrated with someone who you know who just isn’t waking up in their own life?
Anne Jacobs 1:07:01
Yes, um it brings to mind this is years ago because I think both I think my son and my youngest was in middle school and the school is that the one of the teachers had breast cancer um, you know, in the stage two so she went through treatment she was doing fine thankfully. But she had a mom in her class who was diagnosed with breast cancer and you know and you want to talk to her it’s like yes cuz probably as you can tell, just talk and talk and talk to anybody but so I talked with her and she had two little kids one was in I can’t meet you’ll say I don’t know first or second grade one was in kindergarten and she was just diagnosed I don’t think it was metastatic could have been but she was saying she did not want to see a can sometimes are called conventional oncologist she was seeing a just it may be integrative which is great because I just I see an integrative nurse practitioner but this was someone in the Bay Area who was it was more of the natural approach and when she talked to me about her cancer like oh, I said you I had to be very careful because I wanted to just scream at her oh my god are you crazy? You have to you have to start regular treatment. This your cancer is not getting any better. It’s getting worse. I mean it was my head was screaming you have these two beautiful kids you got to do everything you possibly can to stay around like what the fuck but I could that’s what was going on in my head but I couldn’t and outwardly I was like okay, you know, well you might consider I really think you know your cancers progressing faster than you might believe I at least go talk to the conventional oncologist see what they have to say. And and she did she refused. I thought okay, I I talked to her a couple more times, and then I didn’t see her anymore and I actually didn’t I did not want to know selfishly I just did not want to know what happened I could have asked the teacher she would have told me because I was you know on good terms with her and I but I just could not handle the if, if she died I couldn’t handle it. For me selfishly, I just didn’t want to have that knowledge because in my mind she wasn’t in again. This is just this is me. She was doing what she believed was right. I was like, oh my god, you’re not doing everything possible. You can’t just stay around, you’re not exactly exhausting all of your, your resources. So that is very frustrating for me.
Victoria Volk 1:10:08
I just want to make this key distinction to I just want to bring up for anyone listening who might be in that position. Even if you don’t pursue that treatment, I feel like I have to say this. So, I’m going to say it, even if you do not pursue that treatment, it’s coming from it with information. It’s been fully informed and then having the confidence that you made the right decision.
Anne Jacobs 1:10:34
Yes. Yeah. 1,000% knowledge is power. You You are You are so so so so right. Just absolutely. And that’s, I mean, that’s how I that’s just given me whether it’s cancer or any other situation, give me all the information so I can process it and fully understand it to my capability, and then I’ll know how to move forward that that’s kind of like just a personality trait of mine.
Victoria Volk 1:11:05
Mine, too. Yeah. It’s how I’m wired. We could talk about that’s a whole another topic. Yeah, I’m going through a certification program right now. That’s all about strengths and, and values and how we show up in the world and how we’re wired. And really good. Yes, input is one of my top five strengths. Yeah, input. So I need all the information. That’s how I, that’s the fuel in my life. But yeah,
Anne Jacobs 1:11:30
I might have to talk to you about that later.
Victoria Volk 1:11:33
Yeah, I would love to.
Anne Jacobs 1:11:39
That that’s for as far as cancer goes. That to me is is very, very frustrating. To you, to your point, exactly. Just get all the information and then make your decision. I also my, I’ve got two other frustrations. One is that the I don’t know if you want to come celebrities, but people who are out there in the spotlight, and they’re, they get diagnosed with cancer, whether it’s metastatic or stage, you know, one through three, and they they come out, which I think is great. And they say I have breast cancer; they make it look so easy. Compared to the realities of what, and I know, I’m speaking for 1000s of women, because I’m on a discussion board. And whenever something like this happens, everyone just chimes in, they just make it look easy. And then they also have all these resources available to them that the common person doesn’t have that doesn’t get acknowledged. And so that might add to this sense of Oh, she’s breast cancer, but it’s going to be fine. Because, you know, there’s movie star, the celebrity or this other person in the spotlight, they got it and they did okay, I know that it’s very frustrating, frustrating. For me, it’s also frustrating for many others, because whether they go through some really hard times, they don’t really talk about it. It doesn’t, you know, there’s no commonality. It’s like, oh, they’re they’re off here and another sphere. And then here we are left wondering, you know, do my kids have clean underwear today? Can’t remember if, like, if I did a lot, you know, stuff to that level.
Victoria Volk 1:13:17
Oh, wait, did the maid do the laundry?
Anne Jacobs 1:13:20
Right? Yeah
Victoria Volk 1:13:21
I think, too. And I’ve actually interviewed an actress on my podcast, that’s very down to earth. I love talking with her. But I think it’s acknowledging, I think if they would acknowledge the knowledge, make all the difference.
Anne Jacobs 1:13:40
That’s Yes. Thank you for saying that. That’s, that’s it? Yep. It would make all the difference. It really would. And then the other. The other one is, tragically when somebody dies of metastatic breast cancer. It’s very, it’s very rare. That the Artic in, and again, this is someone who’s in the public eye. It’s very rare that the article will say, she died of metastatic breast cancer. They’ll say it’ll say she died of breast cancer. But that’s not the whole story. Because you you don’t die from stage one, two and three, there may be under you know, there may be a coma. morbidities I think is the word. But if you’re going to die of breast cancer, true, it’s going to be because you’re stage four. So, there’s this balance of respecting the whoever is in the spotlight, their family and the privacy because it’s just it’s a horrific thing in balance that with the edge if you can educate the public more about that it was metastatic and how long did she live with the metastatic because Women lived less than five. And you know, like I said, there’s women who are 25 out. And so you get a more realistic picture. And I’ve had discussions, you know, I for me, if I were in the spotlight, it would be Yeah, put it all out there, let everybody know what I went through so that other people can understand. But I also respect that some somebody’s family doesn’t want to do that, because of the privacy, I totally get that it’s like, but though those three things are, those are my frustrations. And I have the last two I can’t really do anything about the first one is I can allow myself how much exposure Do I have to someone who, who isn’t getting the whole picture who’s just doing a very narrow? And usually, it’s not it’s it’s a it’s a narrow focus? It’s the natural the natural way, which there’s nothing I mean, there’s nothing wrong with it. And I do I mean; I take supplements and I do conventional treatment. And I’m, you know, talking with the integrated nurse practitioner. So like you said, it’s trying to get the whole picture so I can work with my medical team to make the best decision for me, but I can, I can affect that the other two, I can’t really do any of those are just like peripheral frustrations. But the one that’s sort of speaks to my heart is if you’re not doing if you’re just focused on the natural stuff, because there are there’s me, I’m in another discussion board where the focus is more of the integrative more natural approach. And I’m, I joined that because I wanted to be educated because some of these women are, they are just so full of knowledge. I mean, it’s it’s an amazing amount of research and that they do and so I wanted to tap tap into that, and I was grateful that I could join. And I realized that there are some women who say, well, I’ve I’ve tried the natural path for a couple years and now my whole body’s metastatic and like Oh, I can’t read this. No, because that’s an it’s their choice. And I don’t I’m not dismissive of it. I just know how it affects me it just it breaks my heart. Because I believe there’s a bound for me anyway, I know there’s a balance, but it’s not for everybody. So I’ve chosen when I when I come across those discussions, many times I can’t I just keep scrolling through the next one. I can’t speak to any of that. Because it hurts me too much. I think probably because that’s I mean, that’s my fear. Deep down is I doing enough to keep the cancer at bay. But that comes full circle back to what you said, but I’m always trying to get as much knowledge as I can to make the best decision I can.
Victoria Volk 1:18:01
In the beginning, have you did you find yourself asking yourself why me?
Anne Jacobs 1:18:07
Yeah, yeah.
Victoria Volk 1:18:09
Did you have a family history of breast cancer?
Anne Jacobs 1:18:11
No, no and I actually got genetic testing done I don’t have any markers for any cancer and I got the genetic testing done probably Oh gosh, I lose track of time maybe six years ago seven years ago so it wasn’t right away at the time you know, I already had metastatic so what difference would it make but I talked with my oncologist I have now and I said but what about my sons and my nieces and nephews Wouldn’t that be good information? She said absolutely so yeah, I have no markers my my mom’s mom died of cancer but I think it was like stomach cancer and her one of my mom’s cousins died of cancer but it wasn’t breast cancer. So and there’s but for my family tree there’s no direct lineage that you know that I know of you know going back three generations that there’s no there’s no cancer so yeah, I did tape you know what what is going on and you know, I it’s kind of like why am I still here? I you know, I don’t know I can guess my guess would be that I didn’t handle stress the most appropriate way throughout my life maybe that built up you know, maybe that affected my immune system broke it down so that it couldn’t attack the cancer and it just started growing because you know, there’s I do believe that everybody has cancer cells just kind of hanging out in their body but our immune system you know, gets rid of them. So for me, I believe is a break Just intellectually I don’t know how else to go with it. I think it was a breakdown in in my immune system and my next thought is okay well why would that occur because I ate pretty healthy you know; I exercise but I really don’t think I handled stress or things that really bothered me very well. I think I pushed it down too far. That’s the only thing we can come up with.
Victoria Volk 1:20:27
Can I ask a question?
Anne Jacobs 1:20:29
Sure.
Victoria Volk 1:20:30
How old were you when you were diagnosed with the initially with breast cancer?
Anne Jacobs 1:20:35
42
Victoria Volk 1:20:38
So had you had any traumatic experiences? Any trauma in your life? grief experiences? I imagine because I’m going to be 42 very soon. And I feel like I’ve lived three lifetimes in some ways.
Anne Jacobs 1:21:02
Yeah.
Victoria Volk 1:21:03
Are you open to sharing?
Anne Jacobs 1:21:06
Um, yeah, I am to a certain extent but yeah, in answer your question, yes. So one of the bigger ones which turned out just wonderfully was my husband and I were married and then we got a divorce and then got remarried. And that was just an awful awful time for me. Um, but we you know, we reconnected, and we got remarried and it’s he’s like he’s just the absolute best i can’t i mean i i wouldn’t I wouldn’t I don’t think I’d be doing as well as I am if it weren’t for him. He’s allowed me to he provides for us so well he provides for the boys he’s just an amazing dad. He takes care of me better than I mean he’s such a wonderful man. We just couldn’t get it together the first time we got it together for you Good for the second but that that was an awful time for me. I actually left California and moved back to Michigan I didn’t know what I was like you know I just thought alright i’m i’m you know going back home so to speak lived with my mom for a while and and during a conversation that Chris and I were having probably about five months after I’d been there and he said you know I want you to come back so eventually you know without going through all the details yes I came back we got remarried and and so we’re living normal marriage life with you know all of its ups and downs. You know, just because we decided to get married doesn’t mean remarried that hasn’t been a cakewalk but you know life life’s just hard so you can make this commitment to something you know, we made this commitment and you know, especially with with calling being a little guy my stepson I said you know, if if I’m going back I’m not leaving because I can’t do this to Collin he’s just he’s like two years old. And so we’ve you know, we’ve made a pretty good life and and that’s a whole nother topic, but so that was stressful. Um, you know, growing up, everybody has, you know, family stuff. And I just don’t think I don’t think I was really understood how to handle the stresses in life when you’re growing up and anxieties you have as a teenager and you know, then going off to college, and there’s times I think I had guardian angels, like literally picking me there must have been 10 of them picking up me up on my shoulders and saying, Let’s leave this situation and we’ll just go over here for a little while. So there’s many times when I look back, and I didn’t follow my instinct, or I didn’t follow my heart during those times when I think okay, maybe I should have and I don’t mean this in a Pollyanna way. But then I don’t think I would be married I would I don’t I wouldn’t have come out to California would have met Chris, we wouldn’t have gone through our stuff. I wouldn’t have these, you know, this wonderful family by making other choices so but within the everyday life, I believe I just didn’t handle the stress appropriately for my body. I just kept pushing it down, pushing it down, pushing it down, and then it would come It would come back up maybe in inappropriate ways maybe I would burst into tears when the situation didn’t weren’t, you know, really warranted, but it was what was happening with me. That’s the only. I mean, that’s the only thing I can think of other than if you want to think of was exposed to some weird chemical or, you know, we didn’t live we lived, you know, pretty clean life. You know, college, you I drank like everybody graduate, you know, I didn’t, I didn’t drink a lot because I mentioned that because they say, you know, alcohol consumption is one of the things you know, you need that can contribute to breast cancer. But, you know, I, when I got the metastatic diagnosis, I stopped drinking completely. Maybe I have three glasses or four glasses of wine a year. But so that’s why I reflect upon how did I handle the stressful situations in my life? Not very well. gracefully. I try to do a better job now. You know, sometimes I don’t. But when I don’t that means it signals to me that I’m need to take more time to figure out well, what’s really happening, you know, within me, because I do have to say that there is a certain part of me that, you know, takes it for granted that I’m going to like every you know, everybody, you know, before I had cancer, I just took it for granted. I was gonna wake up the next morning, and I can to a certain extent, but they’re just some days I just say, all right, I can’t it’s not, I’m not trying not to think about it, and just, you know, pretend I don’t have it. But I can’t do that very often. Because that’s like I mentioned earlier, it’s just unwanted houseguests that’s here. And I have to learn how to live with it. So if I ignore it for too long, it doesn’t serve me. Well. I did, I did go through counseling. When I was in my 20s. And I’ll never forget, you know, we were talking about the mind body connection, I was sitting, it was group counseling. And then you’d meet, you know, different timing, meeting one on one with the counselor during this group counseling. Someone was speaking. And I remember getting very agitated. I can’t remember what the topic was. I had this thing on my chin like it, it just like, Oh, my skin just opened up. It was like a boil almost that appeared within a half hour. Because whatever’s being said, in the group, I wasn’t. I was afraid to, to, to share. And so because I didn’t like let it out of my body with the words, it was coming out in this boil on my chin. That had never happened before. And I didn’t take a clue from that, like, Oh, you know, a big enough clue. I don’t think like, it wasn’t a big enough moment to say, Oh my gosh, you know, I have to think about what’s happening with me emotionally, my thoughts and how I’m handling all this stuff. But that I still think of that today actually can I can still feel it happening and looking in the mirror going and it was ugly. Looking back on that reflecting back. Yes, I was not handling whatever was upsetting me appropriately. So my body was doing it, you know, speaking out about it. So my body did it for me. And I think that and there’s there’s one other thing that happened, I can’t remember but so hindsight, of course, 2020 I just have to believe that I wasn’t handling the stresses in my life appropriately to when I say properly, I mean to like resolve them, get them out. So I wouldn’t feel so anxious or, or guilty or shameful or you know, whatever was happening so that I could resolve it in some way that was in a healthy way. That’s the that’s the only thing when I say Why me? I don’t really say why me anymore. But early on, I did for sure. That’s kind of what I come up with.
Victoria Volk 1:29:20
Thank you for sharing. I think it’s a good message that people need to hear that. Again, we don’t need to get a diagnosis, to tie in with ourselves until, like, step back from our lives and take a bird’s eye view of why am I feeling this way? What is going on. It’s like when we don’t go to the doctor when we’re feeling well and healthy. We go to the doctor when we’re not feeling so good.
Anne Jacobs 1:29:51
Right.
Victoria Volk 1:29:52
That is also true of our mental health. So, let’s not get to that point, right? like you mentioned support many times throughout this interview so far, the message boards that you’re on a team that you surrounded yourself with the medical team, it’s like you have these you have a lot of different teams, don’t you like the medical team, your family team, your friend, team, the online team. And obviously, that’s been a huge contributor to your success so far in managing things. What has given you the most joy in the future?
Anne Jacobs 1:30:35
Probably my kids. Um, there’s such there’s such amazing people that I you know, like our oldest was over for dinner last night. Our our middle son, we’re going east coming back in two weeks for family game night, and our youngest right now was that he’s living with us, you know, for COVID going to school and online, but he’s in he’s taken a week vacation. So he’s not at home. And, you know, I just, I just love being around them. I mean, and then, you know, I look forward to when my husband comes home at night because he keeps just keeps me afloat. He’s so smart. He’s a great sense of humor. But when you know the first word when you ask me joy, it just, like, it goes right to my kids. And they’ve always been a reason why I you know, keep moving forward. Like I’m not, I believe for me, and it’s not true for everybody. Sugar is not good for me, but I love I love ice cream, and I love cookies. I literally I’ll open up the cookie jar, and say, no, you know, if you can’t do it for yourself, just do it for the boys. All right, and the cookie jar, like goes back on. Okay, and I’m not saying I’m perfect, you know, I, I have, I eat cookies, and I have some ice cream that you know, all that stuff. But when I know I’m really not supposed to be doing something, you know, I already know it’s not good for me. But I just want it that they are the ones that pull me back. Because I want to be here for as long as possible. So that I can just be part of their lives. So, I mean, that’s that’s the, that’s the big thing. Little things are like yesterday, I was driving out to my appointment was just a regular point with my oncologist. And the spinner song that gets called out. I’ll be there something. Anyways, spinner song came on, and I love it. And I just cranked it up. And I’m at the stoplight, and I’m just dancing in my seat. And there’s all these people around me, but I don’t care anymore. Like before, like, well, I don’t want to do anything, I’ll be embarrassed. You know, it’s like you say it took the cancer diagnosis. Like, it doesn’t matter if people are looking at me funny, because I’m, I’m enjoying the song and I’m just kind of dancing and moving in my seat and the song played for most of my drive out. And that gave me joy, you know, a little peace of joy. Um, there’s, like I said earlier, there’s these two gals who post on Facebook and they take pictures too. And there’s some but what she takes pictures of rocks that have been painted, someone has taken the time to paint rocks, and they place them around our you know, our area. And I think that is so cool. You know, part of me, that part of me, I think is always been there to find these little moments, and to tune in into really acknowledge what’s happening. But I just do that even more. And if I get one of those a day, then that’s pretty cool. And actually, actually I just I honestly, I seek something out every day. That’s gonna be bringing me a little piece whether you want to call it happiness or joy or positivity. Even if I’m laying in bed. And I you know, I can’t even move my it’s gonna take it just like okay, I got a roll over. Here we go. And it’s so hard to imagine how can you feel so awful and weak that you can’t even roll over in bed, but that’s where I was. And, and I hear in this, you know, maybe I’ll hear my husband downstairs on the phone, or you know, earlier days. I’ll hear my kids and they’re all talking and laughing and I’m I’m so so sad. I can’t be down there with them at that moment, but then I’m so so happy I can hear them laughing and talking because I’m still here.
Victoria Volk 1:34:45
You can FaceTime in the same house.
Anne Jacobs 1:34:50
Yeah, yeah. Well, they’ll come up I mean, they would come up when they’re, you know, younger they come up, you know, they’d sit in bed with me and maybe we’d watch a TV show or movie, or they just talked to me, so things like that. But it’s, it’s those little times like, oh, I can’t be downstairs, but I can hear them or feel like you said FaceTime last year, I’ve been able to see my mom in over a year, but we can FaceTime and we were playing hangman for a while, you know, on FaceTime. So, I think for me, it’s really important to find something every day that it just has, you know, Ray of Sunshine that comes through. And some days, it’s, you know, clear skies and sunny and some days, it’s cloudy, but you know, that, you know, you can still see a little bit coming through, and I think that that’s what has, that keeps me going, you know, like, my kids, my husband and and, you know, going from the core and then quicksort is the opposite of, of peeling an onion, you start like with the core, and I’ll just ripple effect out the metastatic diet is such a huge, it’s, like part of my life now. And I thought, you know, the first diagnosis, like I said, you know, I had surgery, then I had started treatment in March, it was over in August. And I thought, all right, here we go, you know, not totally back to normal, but I didn’t have to fear the cancer. At that point. Is that, okay? I’m done. And at that time, they weren’t, they didn’t even tell you that, oh, you got to watch out because, you know, 30% of stage one through 330 percent of the women. I don’t know how it placement, but for the women, they’ll get metastatic cancer. You know, 70% won’t, but that 30% kind of a big chunk, they will get it. So, but no one talked about that then. Because it just there hardly anybody with stage four met at this stage for breast cancer.
Victoria Volk 1:37:01
You’re warrior, you’re like wonder Women, your cancer, Wonder Women defying the odds? How about how, as far out as you like those who have lived, maybe 15 years or more who have survived who are surviving 15 years or more out?
Anne Jacobs 1:37:17
That actually is something that that they’re working on, like I know, the University of Wisconsin a couple years ago, they were doing a study, trying to figure that answer out. There’s another, I think it’s called the I don’t know if it’s the MVC project. I don’t know if that’s the type of the official name, but that actually they’re trying to figure that out. It’s not I haven’t been kept on that. So they don’t, they don’t really know, like, of the metastatic population, what percentage is, you know, how many years? I think they say, and again, and I don’t really look at you know, I tell if I’m talking to someone I’ll say don’t look at when you go online, don’t look at the percentage of mortality, because one it’s not you, which is the biggest thing in tos there. You know, some of this information is really out of date. Because there’s so every woman’s body makeup is so different. And you’re going to react differently to whatever medication you have. So for example, I’m called what’s triple positive you know, got her hormone receptor positive and her two new positive so those er estrogen progesterone and her two positive this triple positive when I was on this chemo drug abraxane is all I could do to squeak out a year. But there’s another lady who I know on the boards, she’s been doing it for five years. It note with no problem. So her body cam, her chemical makeup, she can handle it, and then I couldn’t. So that’s why I tell women don’t don’t look at survival rates. Because it’s not who you are. It’s not nice. Yeah. It’s not taking into consideration everything about you. But so that Yeah, so anyways, they they’re working on those numbers now because they up until I think I answered the Wisconsin survey four years ago, and I don’t know where they are, you know, on it. I signed up. Yeah, give me the results. But I haven’t gotten anything. But that’s, that’s a big question out there. That’s getting more and more attention. So, which is good.
Victoria Volk 1:39:36
I want to read something that you share it in your email, and it’s, I had asked you the question, having lived this long with cancer in your body. Is it the will to live? Or is it just not your time? And in part of your response was and I just want to read this out loud. You mentioned m Scott pecks book the road less traveled and you said the first line His life is difficult and goes on. This is a great truth one of the greatest truths is a great truth because once we truly see this truth, we transcend it. Once we truly know that life is difficult, once we truly understand and accept it, and life is no longer difficult because once it is accepted the fact that life is difficult no longer matters. What a beautiful passage Thank you I’ve not read that book. A passage meets new once you’ve read that book. I mean, they actually did read it in high school, but you know, you’re young and you write everything and you don’t care about philosophical things necessarily. But I love what you shared in your email and what you talked about was that your freewill and and how we live our lives how we live our lives affects the quality of our life and possibly how long we have on this earth and it’s right you speaks to that control piece that you said it’s what I have control over you put your focus to your breathing your mindset your body all these areas the whole body health and wellness. Can you share in your words a little bit about that because maybe you’ve reflected on it more since that email?
Anne Jacobs 1:41:22
So, I do believe how how we live our lives can can affect our longevity and then on the so for example if I if I chose to not do you know conventional medicine and go down the natural path or you know I would not be here I would have died a long time I would have died years ago because I you know my cancer is aggressive so but if I truly believe that, you know, traditional medicine was not the path for me and that and I didn’t then I just I wouldn’t be here if I I believe for me that if I didn’t when I got the diagnosis if I didn’t try to start looking at things differently and changing a little bit of how I live my life that I’ve talked about that that would have affected the quality of my life. So I do believe we have the freewill of how do we approach these things that happen in our lives the thing i can’t i don’t know maybe the other side of the same coin I can’t figure out is I think I put in in that email the cousin of a friend of mine was shot driving home from work just he’s in his car driving home and he was shot and in the hospital and he died a week later so he doesn’t have any control over that dear friend of mine son was diagnosed with brain cancer and the way they live their life I believe in her ability and their whole you know to be a can’t imagine a stronger advocate I know that that she and they added years to his life but he died they didn’t have any they didn’t have any control of that ultimately I think maybe on this would be like a whole nother discussion I can go down that rabbit hole pretty quickly it’s like I don’t there’s things I understood we can affect you know how we our reactions to something like I’ve reacted poorly to instances in my life and tried to make amends you know that’s on me I have control of that there’s then there’s all these other things that happen that I don’t have control over and I think though that sort of what you call it that is the dichotomy anyway, that brings me to that that first line and paragraph in in the road less traveled because life is difficult. It’s also joyful and you know it’s everything but it’s not it’s not going to be easy and I think I knew that early on in my life and I was I was given that book by a friend of my mom’s and I started reading it I think once you I guess at once I understood that it is just difficult like it says you say okay it’s gonna be hard to win the hard stuff comes I’m not being punished I’m not you know I’m not being singled out it’s just life is just it is hard. It’s not hard all the time it’s it like it just you know it’s it’s just part of what happens in life but it helped me to understand that for the circumstances that I can’t control stuffs gonna happen and it’s gonna be something on the scale it can be you know, okay easily handled or can be just just horrific event and everything in between. Like I was listening to some of your other guests and cried through many podcasts, I think, oh my gosh, how did they get through? What? You know, they got through life hat, sometimes life happens to you, it doesn’t. So, when I say life is difficult or hard, doesn’t justify or minimize or rationalize all the crap that’s out there. It’s just it is out there. So I, I learned, okay, you know, I’m not hiding because oh my god, what’s the next bad thing that’s going to happen? I don’t approach it like that. I just know that I’m not being singled out. Everybody has a hard life. At one point or another. Everyone has, you know. So, it’s not just me, you know, and I’ll tell my kids or I’ll tell friends, if you see someone who has it totally together. Just know that that’s not them all the time. I remember one of my sister-in-law’s told me that, you know, bright one, her. Her first was first child was born, she answered the door, you know, he just spit up or, you know, she looks a wreck. It just, you know, and here she opened the door to her neighbor, who was totally put together her baby was like, you know, in a cute outfit? And do you want to go to the park, and she was barely hanging on by your fingernails? And just thinking, oh, my God, I you know, I can’t look like that. But then I, I don’t know what it was said in the conversation, that we’ll of course, she looks like that, because you’re not going to go outside and knock on someone’s door. Unless it’s a good day, you’re put together, you know, everything’s going along smoothly. So, you didn’t see her yesterday, and you’re not gonna see your three hours from now. So, it’s, it’s that kind of thing of, you know, if you’re having a hard time, it’s not, it’s just part of life.
Victoria Volk 1:46:55
I don’t want any things, putting things in perspective, right? Because people learn, people are more likely to show their highlight reel, right?
Anne Jacobs 1:47:03
Yeah, yeah
Victoria Volk 1:47:04
Or in person online, whichever it is, it doesn’t matter.
Anne Jacobs 1:47:07
Right, and then, you know, you find those people who you can show the ugly stuff, or have the ugly cry with or, you know, share all all the difficulties in life. But when I read that I was younger, and it just helped me to understand, like, okay, it’s, it’s not just me, and I, you know, it’ll hopefully I’ll be able to handle whatever comes down the road, I already knew that things were, the things could happen. But it was during a time in my life, when I looked at everybody else, like, you know, my sister-in-law, looked at this woman and said, Oh, my God, they seem like they’ve got it all together. And I was sort of grasping at straws, because there’s a time in my life when it was, I was feel I felt like I was hanging on by my fingernails. And so that kind of helped me level the playing in that, in that level, it’s not the right word helped me to cope better with things that work that would want you know, when I did have a hard time, and it also, if you read the book more, it kind of helps you to understand how you can approach situations in a healthy, healthier way. Or a more cognitive or centered way. At least it did.
Victoria Volk 1:48:20
Intentional too, right?
Anne Jacobs 1:48:22
Yes, yes.
Victoria Volk 1:48:23
And I want to mention too, because what I’ve heard now, like two hours, which is like amazing, like, whoa, um, is hope has been, like, the undercurrent of your whole experience so far?
Anne Jacobs 1:48:49
Yeah. I, it is, um, it is.
Victoria Volk 1:48:56
Because if we don’t have that, what do we have? Right?
Anne Jacobs 1:48:58
Right.
Victoria Volk 1:48:59
Especially someone who is facing and is going through exactly what you’re going through, like, if you didn’t have that for 18 years, like oh my gosh, like, what would life be like, right?
Anne Jacobs 1:49:11
Right. It’s, it’s carried me through. You hope that the next day is going to be better or you know, you hope that
Victoria Volk 1:49:23
And grew gratitude when it is yeah, there’s gratitude.
Anne Jacobs 1:49:28
Yeah. It’s, you know, hoping, hoping for the best in situations. And yeah, that’s
Victoria Volk 1:49:37
That ripples to and the relationships you have with people close to you is if you have hope, it gives them hope.
Anne Jacobs 1:49:46
It does. Yeah. Thank you. You’re you’re helping me very well here. Yeah, I think it is hopeful I it’s something that I I think I carry in my heart, because otherwise it’s if I focus on the times when, you know, I can’t get out of bed or I can’t brush my teeth, or I can’t take a shower for four days, because I’m not feeling good. I have the hope that okay, well, I will be able to do that in two weeks maybe. So, I, and I haven’t reached the end of the line, because I have the hope that there are more medications in the pipeline, and there are more trials and sciences working, you know, for all of our collective benefit. I actually haven’t thought what it would feel like if I didn’t have hope. So that’s, I think, why I was pausing because I think I just, I just have it. I’m hopeful that things will get better or continue to be, you know, stable. I know, eventually, actually, you know, I eventually know that the medication I’m on will stop working. Because I, you know, I’ve been through I think 12 different treatment regimens over the years. So, I know at some point, it will, but I’m hoping that it will be you know, one year, two years, three years, I think the longest I’ve been on a treatments three and a half years before had to change. So I’m hopeful that I will be on this for a long time. And then I’m hopeful that there’s a new medication that I will be able to take that will knock the cancer back. And so, as I’m talking, I’m just thinking, if I didn’t have that hope, I probably wouldn’t get out of bed. Honestly. So, thank you for for naming that.
Victoria Volk 1:51:37
This is why I love this podcast, why I love podcasting because the people that do come on here, they give hope they have hope they bring other people who no matter life’s challenges. And there, I’ve heard some really horrific stories, that there is a way out. And if we have to hold on to hold by our fingernails, maybe that’s the one thing we can do that day. Maybe that’s the only thing we can do that day.
Anne Jacobs 1:52:10
Yeah, that’s actually a, you’re giving me goosebumps. That’s a very powerful. That’s a very powerful thought and statement. Really, that’s so true.
Victoria Volk 1:52:22
What do you want your legacy to be?
Anne Jacobs 1:52:25
Oh, my gosh. I don’t I don’t know.
Victoria Volk 1:52:34
I can tell you what I see.
Anne Jacobs 1:52:36
Okay.
Victoria Volk 1:52:37
So if I were, this is my other thought. If I were a betting man, I would bet that one of your top five strengths is positivity. Yeah, it is. But never lose hope. That’s a pretty good legacy.
Anne Jacobs 1:52:55
Yeah. To never lose hope. That’s, I think you’re right,
Victoria Volk 1:53:02
The greatest lesson that you can share with people. You’re doing it right now on this podcast. So thank you very much.
Anne Jacobs 1:53:10
Thank you.
Victoria Volk 1:53:11
Is there anything else that you would like to share?
Anne Jacobs 1:53:14
I guess, as far as the, the metastatic part when you’re you’re first diagnosed and this is kind of circling back to the beginning you will have you will have loss, you like I say you’ll have the loss of sense of self, you’ll have the loss of whatever you are, you know, able to do physically, you’ll have the loss of being able to plan for the future you have the loss of the luxury of believing you’re going to live you know another 30 years, right because if you don’t have a medical condition, which can limit your longevity, you just you just I mean to be healthy, you just have to assume Alright, I’m I’m living a long life, because of course, anything can happen. But most, most people I mean, I you just assume you’re going to get up and you’re going to do these things that you want to accomplish in life and you’re going to have the time to do it. So, you lose that luxury. And in the beginning, you’re it feels like you’re dropped into a foreign country with no map, and you don’t know the language. But you know, take your time. follow your instincts, get to a point where you’re okay with your approach to the disease in the cancer, just to settle a little bit and then and then allow yourself to know that because you’ve had all these losses of things that you had before doesn’t mean that your life can’t have the joy in the positive things. To, from here on out, it’s going to be completely different, it’s going to be something that you don’t want, and you’re going to cry, and you’re going to be mad, and you’re going to scream, and you’re going to do all these things. And that’s okay, it probably needs to happen. But to understand, I guess, you know, you have hope have the hope that it’s going to be better, if not, can be the same, but it can get better. And I say that very humbly. Because I know that there for some women, it doesn’t get better. And tragically, they don’t have as long as they want. So I don’t I take that very, you know, I take that very seriously and to heart and for me, I just had to, sometimes I call it jumping from one lily pad to another, I have the hope that I’m going to get to the next lily pad, whichever one that may be, whether there’s a new treatment, or brushing my teeth, or taking the dog for a walk, or just making it through a day on the couch. But try to keep that little kernel of hope in there. Like you said earlier hanging on by your fingernails, if that’s all you can do, that’ll get you to the next day, because life does completely change. But it doesn’t mean that what you have whatever time we have left it, it can be good. at certain times, you can find, you know, joy, you can find happiness, it may not be how long you want it or when you want it, maybe you have to look for it where you didn’t have to before but it’s there. And to get to just have that hope. And I wrote up, follow your instincts because they’re, they’re there. They’re there for a reason.
Victoria Volk 1:56:43
Amen to that. I read a something today, I think it’s from Genesis, I’m not even sure but what you said made me think of it. God gives us what we need, not what we want. And we could have a whole nother topic, conversation about spirituality, and I’m all about that. Yeah, and taking because we only really touched on that, like, maybe a little bit more, like in the email and just a little bit here, but very interested in hearing the role of spirituality for you and, and all of that, um, is there anything you can share briefly about the role of spirituality and faith for you?
Anne Jacobs 1:57:30
Um, well, it’s, it’s an evolving process for me, um, I grew up in the Unitarian Church. So, I didn’t really understand spirituality until I was probably in my 20s I didn’t get that the minister we had at the time when I was growing up, I thought he was just a great man. He was, I think I’m using the term right if I remember correctly, he was more of a humanist, but he, I think that’s where I learned started to learn about the connection. You know, we’re not this just autonomous vessel here, you know, on Earth, we connect to the earth, we connect to people, our actions, and thoughts and words, you know, they all have meaning then it affects other people. So, I, I thought he was I learned, I guess, you know, you started, you know, what, how old I was little, and you grow up, and you sort of have these things ingrained. But then as I got older, I had a sense that there was something else out there who my best friend was, she grew up in the Catholic Church, and I would go to church with her. And you know, some of this stuff would speak to me and I’ve spent my life kind of exploring different churches and wrestling with the different I don’t even know philosophies the right word, but the approaches of different churches and and i don’t fit into one category, okay? I’m not a Catholic, or Protestant or Methodist. So I realized that and so for the spirituality part of me, it’s going to be probably an ongoing process for me. The day I die, probably, I believe in the power of prayer. I believe that there’s something out there. And whether it’s God or Buddha, or the universe light, you know, there’s just something out there that connects people that’s unexplainable to me. I believe in science. I don’t think science and religion are separate. I look at this whole magnificent world, you know, we live in, in the various states that it comes in. It’s miraculous to me that the earth is even exists. So that in and of itself, too mean means there’s something greater out there and people can say well yeah but it’s you know scientifically this is what happened and I and I agree you know but i think but it’s miraculous we I’m sitting at home and we have these I’m talking to you you’re in North Dakota in California we see each other you know I’m still amazed by television, you know?
Victoria Volk 2:00:26
And how about us as human as a body? Cellular like a cell we are made up of cells, cumulated cells.
Anne Jacobs 2:00:38
Yeah, I just that was yes you read my mind that in the body is just like I’m speaking and talking and forgetting my words and you know I’ve got medicine in my body keeping me alive and so these things to me are miraculous and then you know going back to there’s tragedy that happens in life and I wish it didn’t you know, I but we can’t get around it. It’s just it is there. It’s always going to be there there’s good and there’s evil there’s always going to be good there’s always going to be evil
Victoria Volk 2:01:14
There’s cause and effect.
Anne Jacobs 2:01:15
Cause and effect. Yes.
Victoria Volk 2:01:16
A natural law.
Anne Jacobs 2:01:18
Yes. All of that so so I absorb all of that and I can’t like and that affects it’s still a work in progress. So I can’t I’m I don’t have a for me, it’s a luxury because I grapple with this to say yes, this is what I believe in. And it’s just it’s a more of a straight path. For me, it’s just all these things that come into play every day. But I think it comes back to hope I have to believe in the goodness of people I have to you know, if you just take away the evil that happens and everyone has their own definition of evil, but it’s always going to be there, but I have to believe in the goodness of people and the ability to change and kindness and love out in the world. So that but I can open up the Bible and I can read something in Proverbs that just is just beautiful. You know, I can’t I wish I could memorize these things, but I can’t. So you know, I read the Bible. I read philosophy it’s my one of my brothers and my mom and I and his girlfriend were talking about Socrates and Aristotle and Plato you know and texting and you know all that to me is just fascinating and unfortunately I don’t think I’m going to have enough time on earth to figure it out but I’m really I enjoy these conversations I have with them I enjoy reading about it I have a book that’s called the power of prayer you know for mom a power of prayer for women and I’ll read the some of it I don’t get it I don’t agree with but I can always find something that speaks to me and whether it’s effective or not, I feel better you know, it’s what I incorporate in I will say there’s little things that happened like I just last week, I was having a conversation with our son and my husband we were in the kitchen and what I realized that happened is that I was playing with my rings I threw three rings and one of them had slipped off and had fallen on the carpet under the table. I didn’t know that I woke up the next morning and look at my hand there’s only two like oh my gosh you know what I had to retrace my steps and I said this I said this little prayer doesn’t work all the time. Like what what is lost maybe found I went through the garbage I went everything twice every step retraces my steps all day and I thought I’m just gonna sit down at the table and cry and there I see it under the table on the carpet. Well, were my prayers answered. I don’t know what if someone had found it eventually Absolutely. You know things like that happen through life that make me catch like oh, like the intuition i think is part of spirituality. There’s some connection there does God answer prayers you know, I don’t know because there’s a ton of there’s millions of prayers that go on answered and then that’s a whole nother you know, podcast but for spirituality for me, I just have to the hope the goodness in people the connection that we make with others. I think if you’re a you allow yourself to feel deeply you interact with others at a different level. Like I’m talking about that maybe to the core, you know, I’m having like, what are they the impact? Is that the right word?
Victoria Volk 2:04:56
Yeah, yeah, that’s me.
Anne Jacobs 2:04:57
Yeah. So, to me, that’s all it’s all intertwined. But I do believe there’s something out there I don’t exactly know what it is. I don’t believe that you know there’s a punishing God. One thing that no one said to me was Oh, you’re being punished thankfully, I’ve heard I’ve heard other friends of mine whose children and they will be told that from a religious you know, which I think is horrific but horrible. Yeah. Um, so I don’t believe I think spirituality is love and hope and kindness and helping each other and the goodness of people.
Victoria Volk 2:05:40
You know, the shortest sentence in the Bible?
Anne Jacobs 2:05:45
Ah, I knew that I forgotten. No, what?
Victoria Volk 2:05:47
Jesus wept.
Anne Jacobs 2:05:49
Yeah. Yeah.
Victoria Volk 2:05:50
Now if that isn’t humanizing enough for all of us. Like it’s okay. And you move to speak, prayed move to speak.
Anne Jacobs 2:06:05
Yep. A lot of good lessons come from him. So many good lessons.
Victoria Volk 2:06:10
You are magnificent in my eyes
Anne Jacobs 2:06:12
You are very kind.
Victoria Volk 2:06:16
And I thank you for being here. I’ve loved absolutely loved this conversation. I hope we have another one. Again, I want I want I would love to have you back some time.
Anne Jacobs 2:06:29
You have a gift. You really have a gift you are. You’re doing what you’re supposed to be doing. So, it’s really my honor to be part of this podcast, it really truly is. Thank you.
Victoria Volk 2:06:45
Thank you for saying that I feel fully aligned with what I’m doing. So yes, it feels very good to me. That it is my joy, for sure. I don’t get paid for it either. This is just, I I’m just here to give you space, give other space and bring hope to people. And I think you very much so did that today. So, thank you.
Anne Jacobs 2:07:12
Thank you. Thank you.
Victoria Volk 2:07:15
Where can people find you? You want to reach out?
Anne Jacobs 2:07:18
Um, well. So, I don’t, I used to have a website like 10 years ago, but felt that’s gone. But I’m on Instagram. It’s at Blue Line crossing. And I’m on Facebook, but it’s it’s closed. Facebook, but if I think you can message me still through Facebook, if you know and I’ve done that, you know, contact or connected with people who’ve messaged me. And we have conversations on that the messenger.
Victoria Volk 2:07:59
Is there a Facebook group for those diagnosed with metastatic breast cancer that you could send a link to me and I can put in the show notes that they could request to join?
Anne Jacobs 2:08:08
Absolutely, yep.
Victoria Volk 2:08:09
Okay. I would love to do that and listening to this.
Anne Jacobs 2:08:16
Yeah. And anyone who’s listening who has metastatic cancer, this group this group is it’s really a godsend, the women on it are, are so helpful, so caring, very knowledgeable. And you’ll get every, every type of breast cancer, you know, every characteristic of breast cancer on there, so I will absolutely do that. Yeah
Victoria Volk 2:08:40
Okay, thank you. And reach out to her on Instagram at Blue Line crossing if you just want to give her thanks for sharing her story and telling her how magnificent she has sent her some good healing Juju. Thank you.
Anne Jacobs 2:09:01
Thank you. Thanks for listening to me ramble on.
Victoria Volk 2:09:06
Many blessings to you and your family. There was so much I was I there’s a lot of questions I didn’t even get to. So again, I mean, we I wanted to ask about relationships with your husband and how you both have knit, how he’s navigated this and how it’s looked for your kids, and there’s so much more that we can talk about. So, I definitely plan to have you back. Thank you. And remember, when you unleash your heart, you unleash your life. Much love.
