Caregiving, Grief, and Loving Until the End | Tony Stewart

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Some moments split your life into before and after, and you don't even see them coming. In this conversation, author Tony Stewart opens up about love, grief, caregiving, and the years he spent walking alongside his wife through terminal illness. It's a story about presence, purpose, and the kind of beauty that somehow coexists with loss. And she hangs up the phone, and I just walked in there and looked at her, and she looked up and said, I've got tumors in my lung and my spine.

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And that is the minute when everything changed. I'm Maciel Hoolie, and this is the Life Shift, candid conversations about the pivotal moments that have changed lives forever.

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Hello, my friends. Welcome to the LifeShift Podcast. I am here with Tony. Hello, Tony. Hello to you. Thank you for being a part of the LifeShift Podcast and this healing journey that I never knew I needed. It's been just such a wonderful experience. For me, too, and a surprise to me. And I find that the process of talking about this set of experiences that we don't usually share is really healing for me.

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as well as for, I hope, for the people who will listen to our conversation. Yeah, that is something I didn't really, I think I like on the surface knew the power of storytelling before I started this podcast. think, you know, like you get it, you read books, you know, all that stuff kind of really feels impactful. But telling my own story in this way, in this medium with other people seems to be like this whole other level in which

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I'm able to process things in a different way. I don't know if that happened in your experience, whether talking it through or writing it out, but things that didn't quite make sense when they were still stuck in my head, once they said them out loud, everything kind of fell in line and kind of like made more sense. Has that happened to you? In a way, the whole process of writing Carrying the Tiger has been a kind of an iterative journey in which I've gone through these different phases.

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It began 10 years ago. initial discovery that my wife, Lynn, had tumors was just over 10 years ago. The book is carrying the tiger. The subtitle is living with cancer, dying with grace, finding joy while grieving. I was just writing posts to share with our friends, to tell them what was going on with our story, what was going on with Lynn. Over time, they became more emotional because there was something healing about sharing this information.

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And once I had the guts to start putting in these posts what we were really feeling that day, and the first time I did that, I was sort of terrified and I almost didn't press the publish button on the post. Our friends started coming back to us saying, wow, that's great. Thank you for sharing. I really appreciate that you're telling us what's really going on and not just the gloss and not just the doctor's appointments. But so that whole first eight or 10 years of living the experience

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and I will say accidentally journaling it was one set of processing and feeling what was going on. And it was very much in the, in the moment. Then after Lynn died, after I started climbing out of the shattering grief and finding my way towards life again, I reached the point where I wanted to write the book. had something here. I wanted to turn it into something that other people would read. But now when I was trying to make this a story,

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make this real for people. I went through a whole process. This was last year. This was a whole year of my life going through these memories and iteratively recalling more and more of what had gone on in between the posts and around the posts. And that was a whole other level of reflecting and feeling that I think got much richer. Then I reached the point that I thought, okay, it's done and started trying to package it.

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you know, turn it into a book, hire people to help me make a nice cover and get it into the stores, all those things that one does. And I recorded the audio book and this was huge and unexpected for me. This was back in January and I just read the book for five days and oh my God, that was a whole other experience and all of these emotions and the feelings and so much of the story happened in this apartment where I'm sitting. So that

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brought it back to me in a way that I hadn't felt it in close to a year. And then the final twist, what we started with, here I am doing what is supposed to be sort of a marketing podcast tour, but it's been so meaningful having conversations with hosts like you to talk about what we went through in those years. Well, you just laid out a whole bunch of things that I could go down like 58 avenues at once.

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First, well, I mean, we'll definitely get into your story and this life shift moment and navigating this world of someone you love being diagnosed with something and going through the challenges and maybe the little tiny wins and then the setbacks and all the things that come along with that. But really what I think about first is because you tell a story of sharing your feelings and the ideas of putting that out there for the first time might have been a little bit frightening because what would someone else think or?

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Growing up, were you someone that would lean into your feelings or share those publicly or were you allowed to? Was society telling you you had to be a certain way? What was that like? Really interesting question. Growing up, I was not someone who shared my feelings like this in public ever. I've felt just as much societal strictures as all the rest of us. And I'm a guy, but I was always kind of a softer guy.

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I just always felt a bit like an outsider, like I'm not enough of a guy. The aptitude to be more in our society, feminine about my feelings was always there. But honestly, it was my wife, Lynn, who started to bring me out of my shell. And I actually talk about that a little in the book because I flash back and tell you stuff about who we were in our life. From almost the minute we met, I mean, the minute we started living together, having regular meals together.

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When we were at the dinner table in the evening, she started with, and this went on for a while, what are you thinking? And I would say, nothing much. And she'd say, that's not possible. You have to be thinking something. Tell me. So I started actually paying attention to my thoughts during the day and trying to remember something. that, cause I knew she was going to ask me that question that night. And I wanted to have something to tell her, which made me much more aware of my own thoughts.

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And then at some point, and I can't put my finger on it, she shifted into, are you feeling? She had had a bunch of therapy, I had not. Oh, you got that there at the dinner table. I got it in my relationship. So she conditioned me, she trained me, she helped me reach a point where at least with her, I could tell her what I was really feeling. And you felt safe? I felt safe with her. I felt safe with her. And not judged, maybe? Totally not judged, encouraged. That became...

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huge once we once we got to the kinds of things that we went through together in the story. It's huge. And it's something that I've talked to and not just other guys about, but I think generationally, even, you know, I'm in my mid 40s now. So even in my growing up period, I lost my mom when I was eight. My parents were divorced. Suddenly, I was going to have to live with my father, who probably was not prepared at mid 30s to be both parents to a grieving child.

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And so he didn't quite model like what I needed, I guess, maybe at the time. And so I assumed, oh gosh, I have to be perfect. I have to present that I am okay and that nothing is wrong and everything will be fine. And so I did, and I absorbed this need to show him that everything that I did was worthwhile so that he wouldn't abandon me. Because if you think about it, as an eight-year-old, someone dying is

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kind of like an abandonment of that element of life. And so I just like, I pushed everything down and felt like I couldn't share how I was really feeling. It was always just like, I'm okay, or I'm mad. Like those were my only things I was allowed to be. And it wasn't until maybe in my early thirties when I like opened up enough where I could be totally honest with anyone. And that's when I felt like,

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a full human for the first time is like my early 30s just being like, oh, it's okay to be sad. And so I think there's a lot of generational pieces of that. And I feel a little bit more hopeful when I see the younger generations now feeling open enough or safe enough or to have the permission to share how they're feeling, whether that's good, bad or indifferent. I don't know if you're if you witness the same things in the circles you've run with.

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I feel much the same way. am 20 years older than you in my sixties now. So I started even earlier on the generational, on the generational side, but I have always surrounded myself with artists. Lynn was a painter and artist. A lot of our friends are artists. That is a more open community in general. And I have always felt a need to, I haven't been that open with my own feelings.

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but I've always been really good at helping people who were in pain. remember in my, in college, one of the most devastating things that ever happened to me was at the end of my freshman year, when my three freshman year roommates told me not only that they did not want me as their roommate the next year, but that they had already behind my back, talked to one of my best friends and agreed that he would replace me in that group as their roommate for the next year. I remember spending,

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Four hours that afternoon, walking around the city with my then college girlfriend, crying, sobbing. I just couldn't get over it. I so wanted to belong. I so wanted to belong and these three guys represented normal people. was that sort of like, I felt like I'm somehow not fitting in here. And I so wanted to belong in their classics normal world and I couldn't figure out how to fit in. You said, and I congratulate you, that you started to feel like a whole person in your 30s.

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I feel like it has taken me 20 or 30 years longer than that, even though I had the really good luck to have these kinds of relationships, like with my college girlfriend who was so supportive and then with Lynn who was fantastically supportive in our marriage. And it wasn't until this whole experience, the carrying the tiger experience, that I started to discover that I could be out there like this about these emotions and that it really helps. It makes me feel more complete and people like me.

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Yeah, and people also see you doing that and they have this like unspoken permission to also share their feelings, to feel certain ways, whatever that may be. And I think it wasn't modeled for me. So I was like, like, am I allowed to be sad? Like, is this allowed? It's only in movies. One of the main reasons I wanted to write this book and share this story was so that you could follow along and see me.

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doing these things, having these feelings, being public about it. Both of us, me and Lynn being public about it. She from the get go was public with her friends about her cancer and that was huge. But so that you can follow along and see all these things happening, including my messy emotions, my fear, the little breakdown I had, all these sorts of things and realize even though those specific things are not gonna happen to whoever reads the book or hears about the story,

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We've all got our versions of it in our lives. And to see that, look, all of this is normal. All of these feelings are normal. All this messy stuff that happens is normal. And that guy, Tony, at the end of the day, he came out of it okay. And he and his wife actually had a beautiful experience despite all the horrible things that happened to her during that time. I want people to be able to see like,

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You're not alone. You shouldn't be ashamed. Everything that happens to you is actually normal. Feel free to talk to your friends about it. And guess what? When you do, good things will come back to you. Yeah, it's one step at a time. And I bet in a lot of those moments, you're like, I don't know how I'm ever going to be good again or feel great again. That's just like a normal thing. But then you can see someone like you, like you're on maybe not on the other side of it, but you're you're through it and you're feeling good again.

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I'm feeling good again. I do want to say for all the people who are grieving or who know people who are grieving, the grief never stops. I still grieve for Lynn. In fact, just the other day, something set me off and I cried multiple times. She died four years ago. I'm in another relationship now, but I carry her in my heart. You will grieve for the person as long as they remain dead. That's just all there is to it. But

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I am in a much better place and that typically happens if you let yourself grieve, you do flow through it and you get to a better place. And I'm talking to you and you've, you've had major grief in your life, but it's, it's just the way it is. I'll put a button on this. It took me 20 years to find the spot in which I felt like I was appropriately grieving the loss of my mom. I learned a lot in that journey and I thought it was never going to end, but it did. When I was ready,

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quote unquote, ready to approach therapy or whatever it was at that point in my early 30s, it was time and that is when I was able to move through it. So I agree. It's like, there's just like, there's no end to it. But at the same time, sometimes it's long for people. Sometimes it's short. When I lost my grandmother, I spent the last 96 hours of her life in the hospice house with her by her side. I knew what to do because I did so terribly grieving my mom for 20 years.

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When I lost my grandmother, I was like, I know how to approach this. She was my best friend. She was the mother figure. She was all the things. And it was like, when she died, I was like, OK, Matt, you didn't do all these things before. You're going to do it right now. And so there's this weird silver lining that comes with really terrible experiences that we have. So I agree. I think what both of us are doing right now is trying to make something out of the silver lining from. I actually wouldn't want to say that although my experience was

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hugely traumatic for me and Lynn. was a lot of pain. were operations that went wrong. There all these twists and turns in the first part of the book. I still don't call it terrible. And I still don't think it was a tragedy because we all die. Bad stuff happens on almost randomly. mean, people say people look for causes for cancer. Lynn was not a smoker. She had lung cancer that metastasized. It was stage four before we even before we found out about it was already stage four. But I just say, I don't care.

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what the cause was. She got cancer, people do. And then it was one step after another to try and make the best of it for the years that we had. It's really hard. It's a good model to do. So far, we've totally done a different version of the Life Shift podcast. And I love it. And I love this conversation. But I also want to maybe kind of lead into what you've identified as, I understand there are many life shift moments in everyone's lives.

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What do you identify as like the most specific of from one day to the next, everything about your existence was different? That is a really easy question for me, in part because in the course of writing Carrying the Tiger, I had to decide where does the story start? And although it's preceded by a one page author's note and a one and a half page prologue, you turn the next page and it says, Sunday, September 28th,

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2014. It's an unseasonably warm Sunday afternoon. I am sitting at my desk and I've just virtually, I mean, I'm not looking at the book as I say this. It's like, that's how it starts. And a minute later in the next room, the phone rings and Lynn answers the phone and I hear her talking to her doctor. And at this point for the past few months prior to this, she's been chasing down weird abdominal symptom type things like

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She's getting acid reflux, she's having diarrhea sometimes, she can't hold her food down, she's losing weight. And so she's been in touch with her doctors a lot and they've scanned everything from her belly button down and they can't figure out what's going wrong. And during that same time, very slowly, sneakily, subtly, a knot of pain started to grow in the middle of her back. And when she finally got around to mentioning it to her doctors, they said, oh, that's probably referred pain.

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pain that comes from somewhere else, but you're experiencing it in your back because all of your symptoms are like in your intestinal tract. And eventually a friend said to her, you know, I may just be a bit of proud mother, but my son is a neurosurgeon and he's a really good neurosurgeon and you should go ask him about that pain in your back. So on September 20 something, a few days before this, Lynn had gone without thinking much of it, met the woman's son, nice guy.

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And he just took a routine MRI to see, what's going on back there? Sunday afternoon, early afternoon, the phone rings. She says, hi, Dr. Weinstein. And I can hear her. And I remembered and recreated this short conversation as I was listening to her from across all, like, because something changed in her voice. And she says, yeah, yeah, and whatever, a few small things. What should I do? And she hangs up the phone. And I just walked in there and looked at her. And she looked up and said,

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I've got tumors in my lung and my spine. And that is the minute when everything changed. Yeah. Were you prepared for that? No. You had no, like you weren't? We had traveled a lot to India and Southeast Asia. And although our most recent trip had been at that point, like two years earlier.

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We had always assumed that she had picked up some kind of one of those weird little intestinal amoebas or something that are really hard to track down. And that it was something like that that had been living in her since our last trip to India. And so we just, it never occurred to us. It was like a blindside moment. was a blindside moment. The idea that pain in her back was caused by the metastasis. Lynn had lung cancer.

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It was not related to smoking. It just happened to her. And those lung tumors have been growing the whole time for years, probably, and then had spun off their metastasis. And one of them had landed in her spine and at that point had gotten big enough to almost be pressing on her spinal cord, which we didn't know that day. But that's where the pain came from. And like, no, holy crap. I can't even describe it. In the book, I just say, I am stunned.

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because I could have written paragraphs, but I thought those three words say it better. We were stunned. Yeah. And what do you say to her as a caring loved one? Because I think this is important to me because I think people look to those of us that have lost people and like, what do you say? I'm like, I don't know. I don't, yeah, you know, I said,

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something I don't remember exactly what I said, and I didn't try to recreate this for the book. I went into project management mode. Makes sense. We had different personalities. She's the artist. And although I actually was a filmmaker years and years ago and always liked to create things. So this book didn't come out of nowhere. Still, made in between. made movies or projects. And then I did other things with some big multi-year kind of project type things. And this was my comfort zone. So it's like, OK.

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We're going to make a plan. We're going to figure out what to do about this. But it was Sunday afternoon. There was no one we could call at that point. And basically she said, go swimming, which is what I always did on Sunday afternoons. And before her intestinal problems, we would have gone together. We met in a swimming pool 30 years earlier. She said, you go swimming. And I went swimming, which was the best possible thing I could do because I was just so angry and scared and frustrated and getting some exercise in a way that I love was really good for me.

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And then that night I came back and we sat at the kitchen table and we held hands across this tiny little table and we just couldn't stop telling each other how much we love each other and reminding ourselves and talking about what our life had been like and what we were going to miss. And I should say we were not romantic. I mean, we'd lived together. We loved each other. We called each other best friend, but we never celebrated Valentine's day. We didn't buy, we hardly ever bought each other presents, cards.

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never flowers. We just weren't that couple. And suddenly, we're telling each other, I love you, I love you, I love you versions of that you've made, you're the best thing that ever happened to me. That's what we did that night. It sounds like you were making sure the other one knew how much you cared. Did you have this? It's ending soon mentality or like this could happen tomorrow or was that just like a confirmation that

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This is real, I'm with you. That was a confirmation. This is real, I'm with you. We hadn't spoken to a doctor yet. We didn't know anything. We were hoping that there would be some explanation for this that didn't involve stage four cancer. All we knew was that there was a probable death sentence hanging over us and certainly a bunch of hard treatment ahead. We imagined it would be hard treatment.

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And the world as we had known it up till that moment had stopped and we were now entering another world and starting with the first phone call the next morning, we were going to go diving into this world of trying to figure out what to do about Lynn's tumors. So the goal as a couple was we're fighting this. We're not, there's no resistance. There's no giving in day one. I hate all of those words. I hate fighting.

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I hate giving in resistance, not too bad. Fair goal as a couple was we're in this together and we're going to find our way forward together. Now actually probably that night, maybe fighting would have felt right to me. But as I went through this, as we learned what it's like to live with incurable stage four cancer, which she did indeed have, you learn after a while that sort of like what we're talking about grief and going through grief.

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There's a way in which if you quote fight it, which is the word the whole society wants to use. And I have, I have used that word myself, of course. You just beating yourself up. You're not going to beat it. It's with you for the rest of your life. The questions are, and maybe in the wrong order, how long will the rest of your life be and how much can you enjoy it? How can you make it a life that you live fully for the time you have now?

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Obviously that first night I didn't know that stuff yet. We were just sitting there scared not knowing what this would mean. But now looking back on it, that's what we learned. Oh, you showed your commitment to walking by her side in whatever part. Just as you had the day before when you didn't know anything, you were walking by her side and living life that way. You were just going to do that in this new version of your life in whatever comes forward and however you would tackle that.

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I think part of that question comes from the wrong assumption, maybe. I mean, I think there are people out there that might get a diagnosis like that. And it's they're not they're just going to submit. They're not going to go through the motions. They're not going to take certain medicines, you know, like whatever it may be. It's just like this is what it is. I give up. So that was kind of where that question came from. I think there are some people like that. I don't know.

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Well, no, I mean, I want to speak to that also. Six years later, we decided to stop treatment and start home hospice. And the thing I hate is, once again, this idea of giving up six years in. had been on some miracle drugs. I should just back up and say just very briefly, metastasized lung cancer, even with chemo, most people do not have the great luck to have a miracle drug work for them.

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and you die somewhere between six months and two years after your diagnosis. That's the normal range. Once we had been to the doctors, that's what we were expecting. Twists and turns, all in the book, Lynn got into a clinical trial that extended her life for what turned out to be four years. I mean, other stuff went wrong. The fact that it was in her spine and was the thing we lived with more than anything else, the spinal damage, was actually what

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affected our lives for those four years, than six years, other than the emotional knowing that the cancer was there. All the miracle drugs did was stop it from growing, made it stable. We went through a long journey of discovering that stable is fantastic. If you have incurable cancer that don't expect it. Some people, it really goes into remission, but when you're at stage four, most people, the best you can hope for is what we had several years where it stops growing.

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All kinds of bad stuff happened because of her back. Okay. The second big change was in life shift was when we got the MRI report for the first time in five years, where one of her tumors had doubled in size in the three months since the last scan. And there starts the kind of cancer journey that we could have had in the first place. If we hadn't had a miracle drug, it went on for about a year. We did not think she was dying that day. We hoped because we had just had this great experience.

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We hoped we're going to look for, you know, first, first what they do is they keep you on the miracle drug and they just radiate the one tumor because okay, none of your others are growing. Maybe this one tumor has a mutation and it's growing and we got a few more months and, then the tumor started to grow. It started to get out of control. We tried another clinical trial. Her body was breaking down in various ways, kind of a bigger word than I ever would have used then. And she was in more and more pain. And we finally reached a point

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one day where the amount of pain that she had been going through, the fact that the drugs were no longer holding the cancer and she now had tumors all over the place with some beautiful help from our oncologist who called at exactly the right moment to add, sometimes you have to say enough is enough. I mean, that's what he said with his encouragement. We faced the reality that it was time to stop treating and to have a good death.

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and to die naturally, to die at home, not in a hospital, to die surrounded by love. And so once again, that was totally not giving up. That is accepting the reality that your cancer has reached the point you, all the doctors from day one said, eventually this will happen. And we were lucky enough that it happened in a way and at a time where we recognized it and with the support of that one phone call.

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And this is one, I mean, it's in the book, it's an amazing moment in my life. I was ready to try and pull her into more treatment, which I look back on as one of the worst mistakes I almost made. And it's because I'm her partner. She was more ready to stop. And I like, I don't wanna stop, I want more. But we stopped. And then we had home hospice. And that was a fantastic experience. I think that's a, I mean, that's a big.

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It's a big decision and I think it's a beautiful decision to choose that, right? To find a, I guess the word grace is perfect in this instance of like dying with grace. think, I don't know, but my grandmother also had lung cancer and she had a much shorter period, I think probably within the range that you said. And it felt like we tried the medicines, we tried the things and then we...

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got to a point where it was just like we would have to pour on more and more and more. And she was feeling less and less and less like herself. I don't know that we were able to find the most grace in that journey with her. She was 82 and we were, you know, it's a different part of her life. We did choose this hospice house and we found this space in which she had a couple weeks to really die with comfort and grace as much as we could in that way.

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in a way that she would approach that. And so I commend you for choosing that and choosing, because I would imagine if we remove your wife's feelings from it, but just you, I think that's a really tough place to be as an individual to do that. Was that tough for you? I know you said you wanted to keep going with the medicine, but. It was tough. I had for years believed in hospice.

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And Lynn and I did not want her or me to die in a hospital. I've, you know, I've signed the various, done the paperwork to say, I don't want to die on life support. That night we had gotten, we had been at the hospital for, for scans and some other things all day. And we had discovered that Lynn had now a broken vertebra in her neck. Previously had been her back. She had this terrible back pain and we had gone and gotten her like a neck collar to wear. And she was

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The tumors were going into her brain at that point. I didn't know it until that night, but she was already talking fuzzily. It was just a horrible day. We got this thing on her and she's saying, I don't want this. I don't want this. I don't want this. It hurts. It hurts. And I'm trying to say, please, Lynn, this is what's making the pain. This is what's going to ease the pain that you're feeling. You need to wear this. So we come home and even before we can take off our coats, the

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Doctor's nurse that we were just with her neurosurgeon that we had been with in midday calls to say today when we told you about the broken vertebrae Dr. Bilsky was just eyeballing it the view now we have the radiology reports and they're telling us it's gone into Lynn's brain. We want you to come back tomorrow morning to start some radiation to even waiting until Friday when Lynn was already scheduled to go in for something else will be too many days. And this was like on a Tuesday or Wednesday, even waiting a couple of days.

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will be too long. We need to start radiating these tumors right away." And Lyn said to her, I don't want to go back to the hospital tomorrow. I need at least a couple of nights at home. And I could hear in Cynthia, the nurse's voice, I could hear that sort of the disappointment because she's working with a neurosurgeon. They have the surgeon mentality. By the way, I love him. Great people love her, but their mentality is to fix things. And I could hear the disappointment when she said, oh, of course, of course.

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I'll schedule you for like Friday, whatever the next day was going to be, two nights at home. And we hung up and we had this conversation, Lynn and I, in which she was saying, what do you think? And I said, I don't know, I don't know. It's all getting so hard, but well, maybe if we just did a couple of days of radiation, it'll slow the tumors and make you feel better. And that'll be something, and then you could come home. And we were in the middle of this conversation where in retrospect, it's clear to me that she was like,

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I don't want to say humoring me. I was maybe going to talk her into it because she loved me and she wanted to please me. And that's when the phone rang. And it was our oncologist who had been following along from a distance because for the last few months we had mainly been dealing with other problems and other doctors, but he had received a copy of the report and he said, basically, I'm looking at your radiology report. The cancer is all over your body. Sometimes you have to say enough is enough. Maybe this is the time to stop.

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which I almost want to cry even repeating that now. And that's what gave me and Lynn the impetus for me to stop trying to talk her going in. And he did go on to say, if you go into the hospital, you will probably never come out. We're at that stage. And she didn't, she didn't want that. She did not. Neither of us wanted that. And those were the words we needed to hear that the surgeons were not able to tell us because their mode is to fix things. But our oncologist,

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And I highly recommend even if you need, if you have cancer, even if you need surgery, be sure to have a medical oncologist on your team at your side because you are more likely to get this kind of advice when you need it. Yeah. mean, sometimes we hear the messages at just the right time to kind of make these really hard, but important decisions. And sometimes they kind of push us to that space.

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I realize in hindsight that Lynn and I were incredibly lucky. Just incredibly lucky. We had really good doctors all the way along. A few blips here and there. A few twists and turns of learning things. What happened that was hard were just all the inherent side effects of the way the cancer had attacked her spine and it caused damage to her spine that just kept recurring and more operations and things and twists and turns.

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the stuff anyone who's being treated with powerful drugs goes through, which is guess what? Every drug that you take has side effects and has consequences. And even when there were some, I will call it miracle procedures in her back where like one of her vertebrae was crumbling and they do a thing, a really good procedure called a kyphoplasty where they inject cement into the middle of the vertebrae and they get it back whole again and it's done on an outpatient basis and it really worked.

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But now you have this vertebrae that is more like a little bar of cement in the middle of your back and it put pressure on the vertebrae above and below it. And within a few months, both of them needed kyphoplasties and she's having horrible back pain. So there's no such thing as a free lunch. There's no way to treat anything as aggressive as cancer without all kinds of side effects. And we're not even talking about the emotional damage, which is happening all the same time. Yeah. Well, speaking of that, like, what do you think about your

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part of this journey. Like how are you different because of this these last 10 years and and the waves of all the different stages that you personally went through? What's different about you? I'm definitely more resilient than I was. I'm definitely more aware of the beauty and joy in life all around us, which is almost like a cliche, but it actually happens when you are in this case, my loved one was dying and had a death sentence hanging over her.

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I there I'm using these dramatic words for some years we had this death sentence hanging over her and then for some months she was clearly dying. It brought us super close together. It made us aware of actually the way I want to put it is, and I, and I do say this at some point in the book, and it was a huge realization for me, our world kept getting smaller. Things kept happening where if you had asked me years earlier,

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hey, if this happened, would you still be having a good time? Or if you'd asked her, hey, if this happened, would you still enjoy life? We would have said no at the age of 30 or 40 when healthy. But what actually happened with us is that we continued as all of these things got taken away from us, we learned that the essence of life and happiness does not rely on your having that strong, healthy body.

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on Lynn's actually being able to go to her painting studio and make paintings. This was her life. Her adult life was going to this studio and making paintings. She couldn't live without it. And guess what? She reached a point where she couldn't go up the stairs to her studio. So she drew drawings of her cats around this apartment all the time. And then eventually she couldn't even do that. And she was in bed and clearly we were in hospice. She knew she was going to die soon. And she said to me, I don't want to go yet. I'm still

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I'm still here, I'm still enjoying being here. Having a conversation on the phone with a friend, talking to me, you know, all the rest of her life was gone and she still was loving what she had. And I carry that realization with me every day. Yeah. And I know we started out this conversation of how sharing that journey and everything.

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Do you attribute a lot of that to helping you process and whatnot in the moment, but also after the fact? Like, had you not done that, do you think you'd be where you are? Had I not done that, I would probably not be where I am. Especially the period after Lynn died. during, I started, the posts turned into a kind of self therapy during hospice because at that point Lynn wasn't writing them anymore. She wasn't even able to read them.

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by then and I was compelled to write. I just thought what we were going through was so incredibly beautiful and special. I wanted to capture every minute of it. So that was journaling. But then they became therapy the day she died. And I actually wrote a post right around the time she died, right after she died saying basically, I guess this will be the last post because it was the Lynn Cotula, Caring Bridge Journal. And now Lynn had died. And two days later I wrote my next post.

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And I talked about just the shattering grief. And for the next six weeks or so, I was writing virtually every day and I was writing the kind of stuff which I now know that had I been in a grief group, I almost, you don't go into a grief group one day after you in shattering grief, it's too early and no one does. But here I was, if I'd been in a grief group, this would be the point at which they turn to you and say, Tony, your turn, tell us what's going on. No one will interrupt.

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And I was writing that stuff almost every day, which is like super therapy. Had you not done it earlier, you probably wouldn't have gotten in that practice of realizing the value of doing it after the fact. Well, exactly. This whole journey up till that point in terms of my relationship to the notes was one of increasingly being open about my feelings, being open about what was really going on, getting feedback from our friends, saying that please keep going. This is helping me, stuff like that.

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So I got to this point where I'm writing something that is just completely different from what I'd been writing before, but I needed to say it. And I continued to get feedback from my friends saying, thank you. This is helping me process my grief to read what you're going through in some way. No one's ever defined. I've asked several times, several people, what do you mean by that? And in each case, the people I've asked, wasn't caught, it was like by email have not given me an answer. No one can verbalize it.

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It's just in some indefinable way, reading about the details of my grief was helping them with theirs. And that encouraged me to keep writing about my grief. It's a nice cycle. It's a beautiful cycle. And if anything shortened the period of intensive grief that I went through, and I'll never know because I can't live my life twice and do a comparison, it would be writing those posts. I agree. that time. I agree. There's I mean, getting

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those feelings and in raw form out of you in some way, whether that's sharing it verbally, like out loud with someone or writing it down. I think there's so much value in that. And then you have this beautiful experience to then get triggered to want to put it all together in a way, in a beautiful package for strangers across the world to pick up and feel and see humanity playing out. Yes. And humanity.

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that is not often talked about, the specifics or the details or the nitty gritty parts of humanity. I think it's washed over in movies and television shows and you're like, I think that's what it's like when someone dies in that way. And you're like, it's not. No, it's not. quite like that. There's only one movie that I've seen in my life in which the end stage that they showed in the movie felt very similar to my experience with my grandmother.

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And I was like, wow, this one feels like they knew somebody that went through this, you know? And it's like the same way in your book, probably gives a lot of people that just a sense of humanity, I think is probably what made them feel so good by reading something. Not good, good is the wrong word. You know what I mean? I know exactly what you mean. And it is, I mean, that was the whole impetus for writing the book. I should back up the whole impetus. There were a lot of reasons to write the book.

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But one of the main things I wanted to do is just share the reality of it. My reality. Cause I really strongly believe that the reason people read memoirs and autobiographies is not to hear the author draw conclusions, but to see what it was like for someone else to live this life we're living. And then you draw your own conclusions. What, what, what that means or doesn't mean for you. And I thought, wow, no one has shared this stuff with me.

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before. Let me share it. Let me write the book I wish that I had read. Probably not like in the first months of Lynn's cancer. I would not have read this book in the first, what I read was like emperor of all maladies, biography of cancer, stuff like that. But I wish that I had read a book like this a year or two before. Just read it. Just had this knowledge. Because then all those things that made me feel guilty, embarrassed and ashamed when I had those feelings.

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I would have known someone else went through something like this. And maybe I would have felt a little bit less guilty or ashamed. And maybe when we got to that question of should we stop treatment, maybe I would have been more prepared without an intervention by my oncologist. Maybe. Maybe. If I had thought about it in advance and realized how hard it is for people. Right. Yeah. I mean, we could maybe this whole conversation, right? I do love that you use the word beautiful.

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as far as describing kind of the end part. Because I also use that with my grandmother's passing. I call that last moment devastatingly beautiful because I knew that everything about my life was about to shatter into a bunch of pieces. But to be there and bear witness to this last breath, knowing in that instance, she was at the hospital when I took my first one, you know, like there was such a.

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beautiful cycle there, but I often refer to it as devastatingly beautiful because it was peaceful. was, you know, she waited. The whole thing, I couldn't have painted it better or written this story better for me. So yes, if you're lucky enough to be with someone who dies a natural death, not on machines, letting the body play out and maybe on some version of morphine, that's okay. And being with them,

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through that period is so spiritually meaningful. I mean, you use the words beautifully, devastatingly beautiful. That's exactly how I felt. I wanted to be with Lynn when she breathed her last breath. I was there until about one minute before I was having a conversation with my sister on cell phone, on speaker phone next to Lynn. were having happy memories. And I went into the kitchen to put my dishes down in the kitchen. And during that minute, Lynn died.

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I mean, she had been coming closer and closer. knew we were close. I, and I was pissed off. I mean, not pissed off. I was sad. I wanted to be with her at that exact moment. And guess what? I wrote about that and I got all these comments back. Oh yeah. It happened to me with my mother or my grandmother. And it turns out it's kind of common that it's if on the one hand, scientifically, we don't think that she's really aware.

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of what's going on at that point when she's within minutes of her body shutting down. But on the other hand, what it feels like is they want to wait until the person is out of the room. Yeah, that's what I was thinking. Thank you for sharing Lynn with us in this way, but more importantly, being open about this journey, because I think, and you know now by putting this book together, there's not enough of it. There's not enough of us really talking about what is likely fairly common.

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experience for so many people around the world, because we're not going to get out of this place alive. And so there are going to be different ways that we that we go and you know, and not knowing is so much worse than hearing a hard story. Yes. Because you're planting seeds. You're like, oh, maybe if this happens to me in the future, I can think, OK, Tony did this, did this. Maybe that's not what I'm going to do. But this is how it worked out for him. And yeah, that is that's it.

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That's it in a nutshell was my impetus for the book for sharing all of this. This is a cheesy question and it's an impossible question. But if this Tony, 2025 Tony, could go back to 2014 Tony before that phone rang in the other room before your wife picked it up, there anything that you would want to tell that Tony about this journey coming up? No.

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I think there's something really meaningful and valuable about living it. And, oh, I know what I would tell myself. Absolutely get support for me as a caregiver early. Cause I was trying to be Superman for the whole first year and it almost broke me. It did break me in this little way. So that would be my piece of advice to me and everyone. Get support, get support, get support for yourself. I was so busy getting support for Lynn that I didn't get support for myself until about a year in.

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And that was a hell of a year. It's the whole put your oxygen mask on first. Yes. You can help everyone else. No, I think it's a really important message to share. And thank you for sharing it in this way on the LifeShift podcast. It's a beautiful way to have these conversations that might never happen otherwise. You know, like we never would be able to have these important conversations. And thank you for shutting down, like the word fight. you know, like I think that's important for people to hear, because I think the words automatically come to.

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our mouths because that's what we hear everywhere else. But to hear you say, no, I don't take those words. I think that's super important. So thank you for that. You're very welcome. It's been a great conversation. So we know that you have this book. What's the best way to find the book, to find you, to connect with you, tell you their stories? How do we find you? You can find, first of all, my website is tonystewartauthor.com. The book is named Carrying the Tiger.

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The book is available everywhere. It's available in print, as ebook, and as audiobook read by me. I mentioned that earlier. And it's available at all the places that you could go to get any of these things online. And also if you walk into a bookstore, you can order it there. They probably won't have it sitting on the shelf. That's what happens with a lot of books, but you can order it anywhere. I'm on Instagram. I'm on Facebook. If you go to my website, Tony Stewart Author,

49:19

And all the social media icons are up along the top. And you'll find me on Instagram and Facebook. And there's a contact me form right on my website if you want to just message me directly. Awesome. Well, I encourage everyone to do that. I will put that link in the episode description so they can easily click on it and find you and connect with you. I encourage you if you're listening as part of Tony's story resonated with you, please reach out to him and drop him a note. Tell him how much.

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you connected with it or validated your experience or if you had a different experience, I'm sure you would welcome all of that, right, Tony? Totally. I love the idea, in fact. I want to have conversations and I love learning more about what this is like for other people or what their versions of this are like for them. It's so important. So keep telling your story, keep telling Lynn's story. Thank you for doing that. If you are listening out there and you know someone in your life that might need to hear this conversation because they're going through something similar,

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It would be a great honor if you share this episode with them. And with that, I'm going to say goodbye and we'll be back next week with a brand new episode of the LifeShift Podcast. Thanks again, Tony. You're very welcome.

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For more information, please visit www.thelifeshiftpodcast.com