Conversations on Healing

Welcome to the Conversations on Healing podcast, where host Shay Beider speaks with renowned healthcare leaders, practitioners, and thought leaders to explore the world of wellness, the incredible powers of self-care, and what it truly means to heal today. Join us on this journey to become more whole, healed, and connected.

Shay Beider Hello and welcome to the Conversations on Healing podcast. I’m your host, Shay Beider, and I’m so glad to share this conversation with you. Today, I’m joined by Jonathan Gluck. Jonathan is a writer and editor whose work has appeared in the New York Times and the Washington Post. He was deputy editor of New York Magazine for 10 years, after which he worked as managing editor of Vogue. His work has been recognized with multiple National Magazine Awards. His most recent book, “An Exercise in Uncertainty: A Memoir of Illness and Hope,” shares his diagnosis of multiple myeloma, a rare, incurable blood cancer, and his long and remarkable cancer journey. This is a great episode for anyone who might be going through a cancer diagnosis personally or who is a friend or caregiver of someone who is experiencing illness. Through Jonathan’s personal account, you’ll come to understand what themes can apply deeply to anyone who’s struggling with illness, loss, or uncertainty. So with that, let’s get the conversation started.
Jonathan, I’m delighted to welcome you to the Conversations on Healing podcast. Thanks for joining me today.

Jonathan Gluck Thank you for having me.

Shay So I am really looking forward to where we can go in this conversation. You’ve recently released a book called, “An Exercise In Uncertainty: A Memoir of Illness and Hope,” and it looks at a journey of more than 20 years of navigating cancer and being in and outer remission and different kinds of treatments. And it’s quite a powerful story, and I think for anyone listening, it’s an opportunity to learn certainly a lot more about what it is to struggle with uncertainty, and what it is to live with a chronic illness, and how that can impact all of your primary relationships. And I also feel like there will be some benefits in our dialogue today for people that want to know like, well, how do you approach this with children? Or how do you tell your siblings? Or how do you deal with your spouse or partner or loved ones? And what should friends do, or what shouldn’t friends do?

You know, a lot of the basic stuff in life that you would think we would all know by now, just because it should be part of the human manual that we all receive — but as it turns out, we’re not all so good at these things, and it takes some time to sort it out. And you have some really lovely and thoughtful ideas in the book that you share very openly, that I think will be actually instructive for people that are tuning in today. So I just wanted to start us off there, and I want to begin actually with kind of painting the picture — because like I said, you’ve been dealing with this for more than 20 years- and I want to go back to the moment, you know, where you were in your thirties, healthy, had not a, you know, inkling in sight that anything physically was necessarily wrong, or nothing serious for that matter. And then boom, you discover that you’re on a whole new trajectory. And so I kind of want to start at that first moment of inception, if you’re open to it.

Jonathan Of course, yeah, happy to. So the story is: I was leaving my office one night, just a regular night in November of 2002, and it was kind of raining, kind of sleeting, and the ground was a little bit slippery. And when I came out of my office, I slipped on the sidewalk. And I didn’t fall — nothing all that dramatic — I just kind of twisted my hip a little bit. And the next morning when I woke up, my hip hurt quite a bit, and I thought to myself, well, that’s unusual. I didn’t really twist it that hard. And like I said, I didn’t fall, but it was quite painful. And I thought, oh, maybe I’m just getting older, you know these things happen. I was 38 years old, 37 at that time, and, you know, so I thought nothing of it. A few weeks went by, it still hurt. I went and saw my doctor, he took an x-ray, didn’t see anything, gave me a physical therapy prescription, and I just, you know, went about my business.

In the meantime, all kinds of stuff was going on in my life. I got a new job — at a very demanding job — and any new job takes all that time and energy, as we all know, to sort of get up to speed at. My wife and I had just moved into our first apartment that we owned together. There was a lot to do on that front. And we had our first child, my daughter AJ, in April of 2003. Then in November of 2003, it occurred to me — it had been a year since my hip started hurting. And not only had it not gotten better, it had gotten substantially worse. I was having trouble getting up and down stairs, trouble getting in out of cabs, trouble picking up AJ. So I went back to the doctor. This time, he ordered an MRI and I got a call from his office saying Dr. Weiner would like to see you to talk about your test results.

And I was so incredibly naive and had, as you said, not an inkling in the world that anything serious might be wrong with me, that I remember thinking, like, wow, what a nice man — you know, in this day and age, a doctor who will actually call you in to tell you your test results instead of just send them in MyChart or, you know, send you a text. So I walked in, and pretty much from the second I got there, I knew something was up. The receptionist, as soon as I said who I was, looked over her shoulder with almost kind of a unspoken signal to the physician’s assistant, who then took me immediately to the examination room — no waiting, no nothing. And the doctor came in a moment later and sat down and said, “I have to tell you, you have a lesion on your hip.” And I said — I didn’t even understand the word — I said, “A lesion? You mean, is that a tumor?” And he said, “Yes.” And I said, “Is that cancerous?” And he said, “I think it is.” And just like that, I was a cancer patient.

Shay Yeah, it’s so interesting, right? All those little signals and cues and all the — I feel like that’s so much of the navigation of medicine too: is not knowing, but then kind of knowing based on emotional intelligence, and then finding out, and then what you kind of do in the aftermath of finding out. There was a piece that you wrote in, “An Exercise in Uncertainty”, and I grabbed the quote — cause I thought it was interesting. You shared this early on in the book, and the quote is: “One of the hardest things about getting sick is that you feel as though you’re upsetting people who love you and care about you. It may not be your fault, but you still feel responsible and guilty.” And I thought about — here you are, you’ve got a wife, you’ve got a young, like practically newborn child, young child, and you’re a young man in your thirties, and suddenly you’ve got this news that you have to share.

And like you said in that quote, it’s like that sense of, it’s not my fault, but it still feels like in a way — even though it’s not at all. And that kind of obligation, of how hard that must have been to share with your loved ones. And so I want to talk a little bit about that process of sharing, because — and you name it in the book — you know some people don’t handle it well. Some people — and you share — your siblings, each one was very, in a sense, aligned with their personality in terms of how they received the news, and almost what you would’ve predicted, and you know having known them for so many years. But I’d love to hear your ideas about the art of both how you communicate, and then how that can — or maybe even should — be like received by loved ones when they hear such big news.

Jonathan Yeah, I mean, I was figuring it out in real time, as they say. So interestingly enough, my very first reaction when I heard that news was just pure denial — you know, right out of the textbook of, you know, the stages of grief, you know. And I literally — the first words out of my mouth were, “No, no, no, no, no.” And then I said to my doctor, “This can’t be, I’m 38. I have no history of cancer, no risk factors. I just had a baby girl. It’s not possible.” So there was that. And then fairly quickly, I moved through that and started to realize that, just as you were speaking about a moment ago, it was going to be incredibly hard for me to tell my wife, my family, my siblings, my parents. And so my next instinct, weirdly, was to call my boss and just say, “I’m not going to be able to make it to work today.:

I think I did that in part just because I was trying to normalize everything — like as if, oh well, as if I have a cold and I’m not going to come in because I have a cold. And in part, it was just a way to put off telling people who I truly loved and cared about the news. After I got calmed down a little bit in my doctor’s office, an idea occurred to me — that I was going to call my therapist, somebody I’d been seeing for quite a few years already. And I felt like she occupied kind of a sweet spot in my life: she knew me well, cared about me, but she wasn’t a family member, and she was professionally trained to handle this sort of thing. She very kindly agreed to see me right away. So I went to her office, and I got maybe an ounce more settled down, and she said, extremely kindly, “Would you like to call Didi and have her come here, and you can tell her here?” Didi’s my wife.

And so I said yes, and Didi came over and was just extraordinarily lovely in that moment. And did what — you know, again, I don’t know that I want to give people advice about this, because I’m not sure there’s a right and a wrong way to do it — but, you know, since you’re asking, I’ll, I guess, share some thoughts about that. And in that moment, you know, when I told Didi, she really didn’t do anything. She just held my hand and looked into my eyes and said, you know, “It’s going to be okay.” And I didn’t take it as a kind of false positivity, as in she was trying to predict the outcome of my illness. She wasn’t. I took it as a reassurance that whatever happens, she was going to be there and it would be okay. And that — like I say, I’m not here to give advice — but I can say that was a pretty great response.

Shay Absolutely. Even — and you talk about this in the book — what’s so fascinating is it’s also how the cancer diagnosis not only lands for you, but also how it landed in your wife’s life story. So, you know, Didi, she had gone through the loss of her father at a relatively early age. And so the experience of that level of a like primary loss, particularly of a male figure, right– and now suddenly, here she is, a new parent — and obviously, it certainly would’ve occurred to her like, oh my goodness, am I going to be then the one left kind of responsible?

And you could see like how it the diagnosis also landed within the context of her life. And that’s something you discuss in the book, and something that it sounds like you discussed through therapy together — is that it also, we position, all these things get placed within the context of our whole life that has led up to that news. And so I’m interested in what you’ve kind of come to understand about that — like how each situation is so unique. Because like this information was landing in you, who had your own life story and the way that this was fitting into your unique story. But it was also the same for your wife, and ultimately your siblings, and all of your loved ones, your parents, and everybody that mattered to you.

Jonathan Absolutely. And, you know, I just told that story about how lovely DiDi was in that first moment — and she was. At the same time, as time went on, we really began to struggle — both of us, as a couple, as individuals — all of the above. You know, the Hollywood version of these things is: if somebody gets sick, and, you know, your spouse or partner is gonna be this angelic figure who’s nothing but helpful and, you know, plays all the roles in your life — you know, nurse, therapist, I dunno, priest, rabbi, imam, you know, caretaker, all of it. In our experience anyway, it wasn’t at all like that. As you say, my wife’s life story played into how she reacted, my life story played into how I reacted. And essentially — not to mention that, you know, she was the mother of a young child and a working mom at that — and already stretched as thin as all people in that situation typically are.

And then she has this nuclear bomb dropped into her life. So the two of us had a really difficult time. We had some really terrible arguments, to be blunt. And DiDi’s feeling was that I was constantly in need of more than she could give. And my feeling was that she was constantly not giving me everything I wanted. And it took a lot of couples therapy to unearth a lot of these feelings and reconnect. But I would say, that everything you’re talking about played a big part for me — youngest of four siblings, raised in a family where I always was kind of clamoring for attention the way that that can happen with, you know, that situation. I wanted a lot of attention, especially when something was not going my way, to say the least. Didi, as you mentioned, had lost her father as a young girl. You know, I sort of joke in the book — a little bit of gallows humor — about, you know, they say you marry your father, but, you know, in this case, that was not what we were hoping for. You know? And the idea that she might then lose another person who she was very close to — and as you say, another male figure in her life, no less — was terrifying to her, of course, you know? And none of these things were fully conscious of, or maybe even at all conscious of at the time, but they definitely played into our story and made it really hard to contend with.

Shay In the book, you mentioned Alice Applebaum’s work on caregiving, and, you know, it just got me to think about — like we have these ideas of what caregiving is, and then there’s the reality. You know? And the reality is hard. And honestly, when I read the memoir, I was more impressed that the two of you — that you and DiDi were able to stay together through all of this, especially because you’ve gone through this now, you know, kind of, to just synopsize it: it’s 20-plus years of going in and out of remission, one treatment after another, having, you know, significant side effects at times from those treatments, still trying to both work and parent and raise children. That is an enormous amount of pressure and living with that level of uncertainty for, you know, just nonstop. So I honestly feel like it’s more remarkable — the amount of love and tenacity and willingness. And there’s actually a moment in the book where you sit down with a therapist, and as I recall, she kind of lays out three choices, right, and you both make the choice of those three choices that like you want to stay together and you want to work on it. Like that’s the decision that you make. And I thought about, wow, like how much love does that require when things are really hard, at their hardest, and you’re not getting along and it’s tough? And you both still said, yes, yes, it’s still worth it. We still want to be together, we still want to fight for this. And it’s actually — it’s a good, beautiful testament to your love.

Jonathan Now, that’s very kind of you to say. And I guess I’m inclined to agree. I mean, it was an extremely dark time, and yet, as you say, there was a bedrock of love there on both our parts that made us say yes in that session, you know, to the idea that we wanted to continue to try and fight to make the marriage work. I don’t want to sit here and say that was remotely easy. It was extremely difficult. There were a lot of painful sessions of therapy along the way — not to mention just our own arguments and treating each other badly — but in the end, it did force us to confront a lot of difficulties in our relationship that, frankly, you know, as I write in the book, you know, they say cancer either destroys a marriage or helps it get better. Our case, it did both. And it wasn’t so much that the cancer caused the problems in our relationship, although it did cause some, it’s more that it exposed the previously existing rifts and fissures in the relationship.

And I think in that session you’re talking about, I think I said something in the book about when our therapist, Hillary Wonger, who’s very wonderful — wonderful at what she does — said, you know, “These are your three choices.” And we both chose to go ahead and try and, you know, work through this and save the marriage. I think I wrote in the book something — it was like the weather changed in the room — because just each of us saying that out loud to the other, I think, gave us both a sense of like, okay, now there’s a basic fundamental feeling of love and willingness to try and sort this out. That was tremendously helpful in setting the tone for doing the work we needed to do. And then, slowly but surely, Hillary kind of got us into a mindset of, instead of trying to win the argument, so to speak, she got us into the mindset of working together to solve the problem. And once we got into that groove, things started to improve.

Shay That’s great. Yeah, I mean and just like, there’s this whole side of, right, how do you manage an intimate partnership while managing a serious illness that has so much uncertainty, you know, embedded in it? And I think you do a beautiful job in the book of just laying out some of the wins and losses in your relationship around this and how genuinely hard it is at times, but also ultimately you’re still together. So here you are — all these years, you know, into it — and you’re still together, which is, I think quite miraculous. And so one of the things you do, and you share in the book, is you do talk to certain experts, and you get insights — like you, you know, learned about Alice Applebaum’s work — and what did you come to understand about caregiving that maybe you wouldn’t have known had you not, you know, intentionally like decided to dive into the depths of that?

Jonathan Yeah, wow, so much. I mean, a lot of the book, by the way — I should say, because I think it’s an incredibly valuable resource — it’s called “Stand By Me,” and the author is Allison Applebaum. And she made a point: she’s a social worker and psychologist, if I’ve got that right. And she was practicing at Memorial Sloan Kettering Hospital, a major cancer center here in New York. And ostensibly, her job was to counsel cancer patients. And what she found was she was spending the vast majority of her time actually counseling family members, loved ones and caregivers. And she decided — realized there was a big gap in services for those folks — and decided to concentrate her career, focus her career on that. So she wound up doing a tremendous amount of original research and studying all the literature on the subject, and started the first-ever program of its kind at Sloan Kettering focused on providing counseling and support for caregivers.

So I learned a ton from her book. Interesting side note: the reason it’s called “Stand By Me,” apart from the fact that it captures the idea of caregiving, is her father was a musical arranger who contributed to the hit song, the Ben E. King song, Stand By Me. So little bit of trivia about Allison there, but a charming bit. Anyway, she, you know, it was everything from the guilt that caregivers often feel, because — and Didi has articulated this to me — that sometimes she thinks, like, gosh, this is really hard, but what right do I have to complain when you’re the one who has cancer? I think that’s an extremely common feeling. The day I was first put into a remission, about 18 months after I was first diagnosed, and came home and told DiDi that, Didi’s back went out — I mean, big time. She had to get, we had to have the paramedics come take her to the hospital.

And that’s extremely common. I learned from talking to Allison that caregivers often are carrying such a heavy load that when that load is removed — even temporarily — that finally gives them the chance to sort of break down and have the reaction that anybody might when they’re under that kind of pressure. Another aspect is just the resentment that can build up, and that’s related to the guilt part too, because you start resenting your partner for putting you in this position — even though, again, as you said at the outset, it wasn’t my fault. I’m sure DiDi never thought it was my fault, but there’s still resentment of now I’m being dragged through this emotionally, having to do extra, you know, work on the home front, and, you know, on days where I was at appointments or wasn’t feeling well enough to carry my load, so to speak. And you start to get angry at the other person — that’s only natural — and then you feel guilty for being angry, and then you feel guilty for feeling guilty, in the way I was talking about — feel bad about feeling guilty.

So it’s a complicated process, to say the least. And I guess the last thing I learned that was really put into perspective that comes to mind is Allison’s done a lot of studies that sort of place caregivers in the same position as a lot of other people who suffer from post-traumatic stress syndrome. So it’s that difficult, is what I’m getting at. Not to make a direct comparison to people who’ve been through any different kind of traumatic experience that can bring on PTSD, because they’re all different and all horrible in their own ways, but a lot of the characteristics that PTSD patients demonstrate are demonstrated by long-term caregivers.

Shay Yeah, it’s so important to understand that. And it’s interesting through the work that we’ve done at Integrative Touch. So we have worked, over the years, a lot with children who are seriously ill and their family members, as well as adults but. And what you see is like the way we’ve designed the healthcare system is patient-centered, right? And, you know, what we’ve often missed is it’s whole families that go through these experiences together, and, you know, everyone has a different role in terms of how they’re both helping and how it’s impacting them. And so yeah, the deeper understanding of no one actually experiences illness and isolation — or that’s extremely rare. Cause most of us have someone around us, or multiple people around us, that really are going through it with us. And I do think — and that’s a powerful part of Allison Applebaum’s work — is like we need to redesign the healthcare system to, in my view, take all of that into account, to be more like family — or caregiver-centric, as well as patient-centric, because it really, it’s a story that a whole group of people go through together, not just one.

Jonathan I couldn’t agree more. Yeah, I think that’s wonderful that you all are focused on that. There aren’t enough people who are for sure.

Shay Yeah, there was just another part in the book that I thought was — it’s like these are the things that go through people’s minds. Like I think it might’ve come out in a therapy session, and I think the therapist might’ve actually suggested it as an idea, but that this idea that also your wife might feel like, how horrible would I be if I left someone who has cancer? Right? Like just the thought of, like, “Ooh, who would that make me?” And, you know, like, those are the crunchy, hard, painful like things that you get in the midst of when you’re in kind of a family crisis and illness and everybody’s feeling the pain of that and the difficulty of it so.

Jonathan Yeah, that was another of those powerful couples therapy sessions we had, and that was so helpful. And Hillary, our therapist, helping us both see that we weren’t trapped because that feeling of feeling — nobody likes to feel trapped, right? That’s a terrible feeling. And to the point you were making a minute ago, I think DiDi felt trapped because, as you say, she felt, how could I possibly be the person who leaves the guy with cancer? That’s you know… I’d be a monster. And I felt trapped because I felt like, how could I ever leave Didi? I need the help, number one, right now. I need the support. And number two, who’s ever going to want to date or be with somebody who’s got an incurable disease, and one that places pretty heavy demands on them at times? And Hillary helped us both see that those weren’t, in fact, true statements — that we weren’t trapped, that we could, you know, leave the marriage if we wanted to, and that there’d be life on the other side of that. And I don’t know how to describe it except just knowing that that was even an option, and not having that horrible burden and weight of feeling like you don’t have choices, was helpful to both of us.

Shay Yeah, that’s really wonderful. You did so many positive things, and one of them was fly fishing. So fly fishing is something that obviously you have a deep passion and love for, and there were so many moments in your book and in the way that you tell the tale and the narrative where you would very intentionally take a trip and go fly fishing to help — to just be fully in the present moment, engaged in something you love, kind of in a flow state. And so I want to talk about also the ways that you consciously chose to hang onto the things that are working, and that are good and healthy and positive for you in the midst of 20 years of navigating hard things. So tell me more about how you found ways to cultivate and sustain what really matters to you?

Jonathan Yeah, it’s a great question. Another woman I spoke to in researching the book is a woman named Kate Sweeney, and she studies uncertainty. She’s a sociologist at the University of California, Riverdale — sorry, Riverside. And she does, has done fascinating studies about the very notion of uncertainty and how difficult it is for humans to live with that in a state of uncertainty. So she told me about research where people were divided into two groups, and told that they were going to receive, one group would receive a small electrical shock and the other would not. And some huge majority of the people involved in the study — they couldn’t tolerate for more than a few minutes the uncertainty. And they would just say, “Just go ahead and give me the shock. I’d rather just, you know, get shocked than have to sit here and wonder anymore.” And it’s a really powerful finding that we’d rather have the bad outcome than just not know.

So then I said to — we had many long conversations. I asked Kate Sweeney, you know, “So what should we do? What can we do to help mitigate that feeling?” And she had some great ideas. One of them is just simple distractions. You know, some of the things that seem obvious are actually effective, you know: go take a walk, turn on the television, read a book, you know, try not to ruminate. Basically, another one — as you mentioned — is doing something that gets you into a flow state, something that deeply absorbing that you really love. It doesn’t matter what it is. For some people, it could be baking or yoga or knitting. For me, it’s fly fishing, and I’ll come back to that in a second. But so then she said, “But even all those things, you know, they only work so well.” She said, her friends often ask her, “You know, you’re an expert in this, what do you do when you’re feeling uncertain?” You know.

“How do you handle it?” And she said, you know, the truth is not very well because it’s really hard. So at that point I said to her, “Well, that’s not, you know, very hopeful.” And she said, “Well, I’ll tell you what I do find hopeful is that just by sharing this information and reminding people how hard it is to deal with anxiety and uncertainty, it helps them realize they’re not alone.” And I thought that was very powerful and that it’s normal to feel that way, and it’s normal to struggle with those feelings. And of course, anytime we know, we hear that we are not the only ones, you know, facing something — that is of comfort. So all that by way of saying, my flow state activity even before I got sick was fly fishing. I love it for a million reasons — almost always doing it in a beautiful place, it’s completely absorbing.

It takes all your attention. You’re often staring, you know, maybe 30 or 40 feet away at a little, you know, fly that’s this big, and with all your mite concentrating to see if a fish is going to come and take that fly. And when you do that, all your other troubles just kind of melt away. So I was pretty passionate fishermen before I got sick, and after I got sick, it wasn’t a hobby or a luxury or something I enjoyed. It was almost a necessity because it was the one thing that could truly take me away from all my troubles, whether they were cancer related or anything else — but especially anything cancer related. Being on the river, being away from hospitals and my family for that matter, or friends who — and my job and all of it — all of just because they knew my situation and I know that they knew. And so, you know, it was always a certain element of pressure underneath all of that, carrying the weight of them knowing. But to go out in a place where I was a stranger and a tiny speck in the universe, and the way that that can be a good feeling, has always been pretty wonderful. And I’ve tried to stay in touch with that as much as possible.

Shay Yeah. And you raised there another piece that you talk about in the book, which is like in one of your workplaces, everybody knew that you had cancer, and then you switched because you moved to a different job. And in that new one, you hadn’t told anyone, and they didn’t know. And how different that experience was for you — of being in a context where people knew and where they didn’t. And it seems — and I’d like to hear more how you feel about this — there’s pluses and minuses to both of those, and so I’m interested to hear what you learned about that in terms of the workplace.

Jonathan Yeah, you put your finger right on it — pluses and minuses to both. So in the first job you’re referring to, that’s where I was working when I was diagnosed. And so I had to miss a fair amount of time while I was being radiated. I was radiated, I believe, that first round for five weeks, if I’m remembering correctly. And, you know, every day, five days a week, I would have to leave work at one point and go to the hospital and receive my treatment, and then come back to work and finish my day. So it’s not like I could hide, you know, that I was sick. So pretty much I started at that workplace by telling a few people and then, over time, telling more. And, you know, it just was a necessity. Everybody was lovely. People were very wonderful and understanding, but still — and as much as I tried to not dwell on it or talk about it too much or let it interfere with my work — people knew. So you don’t want to be — I didn’t, anyway — want to be the person whose life was defined by cancer.

I didn’t want them looking at me and saying, “That’s the cancer guy”. I wanted them looking at me and saying what they always said: “That’s my colleague, that’s John. He’s the guy who does this, that the other thing.” So I tried to keep it in check, but still, people knew, and there was no escaping that. Once you tell people, there’s no going back. The second job you’re referring to — when I started that job, I happened to be in a complete remission. And during the whole time I worked there, as it turned out, I was in a remission. And there were many occasions where I was temp- I wasn’t keeping it a secret, exactly. If somebody had asked me or said that they had heard or knew or something,

I would’ve told the truth. But I didn’t make a point of telling anybody proactively. And again, pluses and minuses. As you say, on the plus side, it felt good not to be seen as the guy who had this dark fact attached to him.
And on the minus side, it’s a little weird to keep — I don’t even know if you’d call it a secret, because again, it was no- I don’t think I was under any ethical obligation to tell people. But it’s strange to have something that’s so important in your life — and I worked at this job for almost four years — that people pretty well like, care about, work with every day, don’t know anything about. So there’s a weird burden to that, of, you know, feeling like you have a secret or an important part of you that you’re not sharing. You know people talk so much these days about bring your whole self to work. I was definitely not bringing my whole self to work in that job. And there is a kind of dissonance that comes with that.

Shay And it’s interesting because you also had to navigate that with your children. So you ended up having two children. You know as you mentioned in the beginning of your story, like you had already had your first child — your daughter — when you got the diagnosis; you had not yet had your son. And then that also became a complicated process because it’s a whole different dance once you’ve had treatment and things. But you ultimately chose to have another child, and you had a son as well. And, you know, through that — because then obviously they were both so little — like when do you tell them about the cancer? And that process, too, of like… so I want you to share about that, because it was very interesting to me that later on both of your children said they thought the timing of when you told them was good. But I’m curious like just to have you share more about what you learned about how and when and why you tell children these things.

Jonathan Yeah, that was easily one of the most agonizing parts of all of this — was trying to figure out how and when we would tell our kids. Obviously at beginning, it was a non-issue because my daughter was seven months old — we’re obviously not going to tell her. But in the same way I was talking about how it’s weird in the workplace to have a secret, you know, it’s even more weird, I think, in a family to have a secret. So my wife and I were always eager — I guess would be the word I would use — to tell our kids as soon as we thought it was reasonable to tell them. But as we talk to more and more people — our own therapists, our own friends, relatives, you know, wise elders, for lack of a better term — pretty much everybody said the only way this would be a problem is if you were creating some kind of disconnect with your kids.

If you were super sick all the time and in the hospital, or you had lost your hair, or, you know, you were nauseous, or if there were outward signs of your illness and you weren’t telling your kids, that could be harmful in the sense that you would create a weird — you know, they would probably sense on some level something was wrong and that they weren’t being told. In my case, that wasn’t the case. I, for the most part, haven’t been outwardly, visibly sick — or I wasn’t during that period of time. So the other side of that is, people would say to us, “So why are you going to tell them?” And I came across a really interesting concept of the need to tell versus the need to know, as in DiDi and I had an urge to tell because we wanted the secret off our backs, so to speak. But that didn’t mean the kids needed to hear it.

And so I tried to use that as my north star as we went forward for when to tell them. And then, when my daughter was graduating from elementary school — so she was, I guess, 12 at that time — and my son’s five years younger, so he was seven — we decided she was old enough to understand, and that once we told her, it wasn’t fair to ask her to keep a secret from her brother. So we would tell him as well. They were both old enough, you know, we decided, finally. And we also decided it was wise to tell them when I was healthy and in a complete remission. So that timing lined up. I happened to be healthy at that point. So we went ahead and told them. And it was one of those things where, after years and years of worrying about it, I had two simultaneous reactions. One was an incredible sense of relief that finally, you know, we weren’t keeping this from our kids — when all along we did have this need to tell or urge to tell. And the other was laughing at myself because we worked it up into such a big thing. And kids being kids — I’m not going to suggest my kids weren’t concerned or bothered by it to some- they were, but they mostly handled it incredibly well, with grace and resilience and just basic good humanity. And so all that worrying, in a way, was for naught.

Shay Yeah, it’s such a personal decision, and I don’t think there’s a right answer. It’s like you said, there’s a lot of layers to figuring out even the state of your health in the moment that you made — like the timing was so important. So yeah, definitely. But I think it’s interesting how thoughtful you guys were to try to figure out when was the right time, and asking people, getting feedback, you know, checking with the therapist — like a lot of layers of processing to try to find the best time, even though there’s never going to be a perfect time. It just is what it is. One of the things that’s been really interesting — cause you have been on this 20 year journey — is that you’ve gone through so many different procedures, and that the curvature really, in terms of cancer treatments — like wow — things have accelerated tremendously just even in the last three to five years with new kinds of immunotherapies and things that are available. You talk in some detail about some of the treatments and the novel things that you’ve tried, specialists that you’ve gone to. So I just wanted to give you a chance to share with our listeners like what it’s been like to be, in a way, almost having your life saved over and over again by innovations in science and medicine.

Jonathan That’s a really interesting way to put it — and exactly true. So I didn’t even realize until I wrote the book and was forced to put the timeline together in a very detailed way, just how miraculous this has all been. But pretty much every time I’ve come out of remission and gotten sick again and needed a new treatment — because the previous treatment had stopped working, that’s why I was sick again — a new treatment came along, or has come along. And I’ve had everything from five rounds of — I’m sorry — four rounds of radiation therapy, two rounds of chemotherapy (multiple weeks each), a round of immunotherapy that lasted for six months and required weekly IV infusions. I’ve had years, literally, of weekly infusions meant to boost my immune system, which was damaged as a side effect of some of the other treatments. And finally, two summers ago, I had incredibly futuristic treatment.

We can come back to later, if you like — called CAR T therapy — which put me into a remission that I remain in today, knock wood. But the incredible thing is, all of these treatments were approved — with the exception of radiation therapy, which had been around for a long time — the particular forms of immunotherapy and chemotherapy I’ve had were all developed to treat my illness more or less in the time since I was diagnosed. And in some cases, with uncanny — you know, an uncanny — coincidence of timing. So this CAR T therapy I referred to earlier was literally approved by the FDA 11 months before I needed it, which is mind blowing when you think about it. And it’s all just an incredible tribute to the radically amazing advances in cancer treatment and the biomedical research that’s been done in the last 10 or 20 years on this front that has given a lot of people — not everyone, goodness knows, and I’m very sensitive to that idea — but given a lot of people a lot more years than we were ever expected to have.

Shay Yeah. Is there anything specific you wanted to share about CAR T therapy?

Jonathan Just because it’s fascinating, I think, you know, your listeners who are interested in science — or anybody — would be interested in it. So what they do is they take your T cells. They set you up almost like you’re having a blood transfusion. They remove your T cells from your blood, they spin them, your blood, through a centrifusion that separates them out. Your T cells, as many people know, are a fundamental component of your immune system. And they send those T cells to a lab, and at the lab they bio-engineer the T cells with a substance that knows how to — once they put them back into you and I’ll come to that — that knows how to basically hunt down and attach itself to your cancer cells. And at the same time, they turbocharge your T cells, so to speak, so that once that molecule attaches the T cell to the cancer cell, it’s then even more powerful than it originally was.

And in attacking and, you know, killing the cancer cells, another incredibly important aspect of that is chemotherapy, radiation therapy — they’re sort of like carpet bombing, right? They wipe out the bad cells, but they also wipe out healthy cells. And that’s one of the reasons why people tend to get quite sick from those treatments. It’s not that there aren’t serious side effects to CAR T, but they tend to be more temporary because they’re not- the therapy is not permanently damaging other tissue. It can cause some very serious reactions, but as long as those reactions are managed, which fortunately in my case they were, you can come through it a lot healthier than you sometimes can with some other treatments. So I had my T cells removed, sent to the lab, and then you have to do two rounds of chemotherapy before the CAR T cells are put back into you to prepare you for that — in ways I won’t go into.

And then I went to the hospital, they put the CAR T cells into me, and DiDi, my wife, was there with me. And, you know, it’s such a strange thing because it’s just an IV bag, and it’s clear — it looks like water. And on the one hand, you’re thinking to yourself, that’s nothing. It just looks like water. On the other hand, they’re literally putting lifesaving, futuristic sci-fi kind of, you know, cells into your body. And DiDi, who has a wonderful sense of humor and just sort of — this captures her spirit somehow — once they hooked me up and started the drip of the CAR T cells, she said, “Okay, cells, work!” As in, do your job.

Shay Do your job!

Jonathan And luckily so far they have.

Shay Yeah, I mean, the advances in medicine — and now obviously with AI being a big player — you know, they’re predicting that one of the most sort of impacted areas by AI will be healthcare. So it’s going to be very interesting to see what the next five or 10 years looks like.

Jonathan Absolutely.

Shay But yeah, you’ve had a chance to live through all of this, which is really remarkable. In your book, you write about that sometimes people will ask you about what being sick for so long has taught you. And I thought it would be worthwhile to share a little bit of what you wrote, kind of, in response to that, cause I think it’s really a- it’s a quite nice summary, you know, of what you’ve learned — and then you can elaborate on any of it. So this is from, actually, page about 267 in the book. So you said, “Sometimes I’m asked what being sick for so long has taught me. If I had to summarize it, this is what I’d say: You can handle more than you think you can. When I was diagnosed with cancer, I didn’t think I could manage such a daunting challenge. After surviving for 20 years, I know I can. People, most of them anyway, are good.

That’s especially true of doctors and nurses. If you do work you enjoy, you’re lucky. If you have money, medical insurance, and other privileges, you’re even luckier. If you have a family and friends who love and support you, you are luckier still. Tragedies happen. So do miracles. I didn’t think I would get cancer in the first place — I did. I didn’t think I would survive it. So far, anyway, I have. If there’s something you want to do, do it now. A good relationship is worth fighting for. Even if it goes bad for a time, love isn’t always pretty. That doesn’t mean it isn’t love. I will never love anything more than I love my kids. If you know someone who is sick, lend them a hand. At the very least, tell them you’re sorry about what they’re going through and wish them well. It will make both of you feel better.

Say yes more than no. Travel or fish or juggle or do needlepoint. It doesn’t matter what you do. Do something that reliably brings you happiness. And if you’re worried about something, do something — anything — to take your mind off it. Nature abhors a vacuum, Aristotle said. Worry loves one. The difference between the sick and the well isn’t a difference in kind; it’s a difference of timing. While the well have the luxury of not thinking about death? The sick do not. The irony is that a heightened awareness of death can teach us how to live. If only the well could absorb that knowledge. If only the sick could live long enough to enjoy it. Perhaps the biggest lesson I’ve learned is to accept whatever life brings my way.” So it’s just this really interesting — I feel like — powerful passage that kind of summarizes so much of the journey that you’ve been on. And since this is, you know, a conversation on healing, I just want to hear like how — in hearing those words — kind of come back to you, right, to be able to listen to your own sort of wisdom. What resonates for you in hearing all of that?

Jonathan Yeah, wow. It is powerful to hear it, and I feel like we could do a whole other podcast about this question alone, but I’ll try and pick out a couple of the things that resonated the most. One is, you know, when I talk about: if you want to do something, do something now. I hesitate to give cancer credit for anything good. Somebody once made a joke, you know, to me that don’t ever make cancer — cancer’s like a house guest — you don’t ever want to make it feel too welcome, or maybe it’ll stick around longer than you want. I do, nevertheless, have to say that there have been some valuable and positive — even lessons — that I’ve learned and things I’ve incorporated into my life. And one of them is that idea that anything I want to do, small or large, I tend to just do because none of us is promised tomorrow, as they say.

And when you’ve faced a very serious diagnosis like this, or you also hear people sometimes have had a near-death experience, for lack of a better term — like a car accident, maybe or something — talk about this too. You realize how precious life is and that it doesn’t last forever. So I have this very sped-up sense of: if I want to do something, I kind of do it. So that can be something small. Like if I’m thinking of a friend, and, you know, I’m not the kind of person who said, oh, maybe I’ll text him next to week, I just text him and say, how are you? Or, let’s get a drink or dinner or something. If I want to go on a trip, you know, to Alaska, you know, I’m going to figure out when and how and how I’m going to pay for it and all of it, and I’m going to do it as soon as I really- as soon as I possibly can.

I actually learned a term for this during the course of writing the book. It’s this term: precrastination. So we all know what procrastination is, right? Putting things off almost to a fault. I do the opposite. Once I think of something, I have a hard time not doing it right away. I get very antsy, almost compulsive, almost obsessive about: well, now that that’s on my list, I have to do it. So it’s mostly a good thing. And it’s mostly a way in which, as I say, much as I hate to admit it, cancer has improved my life. But it can also be a little bit crazy and I can drive other people crazy that way too, because I just want everything done instantly. So that’s one thing that really resonated. The thing that, frankly, really I got choked up about listening to you read back is just what I said about my kids.

It’s like — I love my wife, I love my siblings, I love my parents. There are a lot of people in my life I love, but, you know, the whole time they’ve been a tremendous inspiration to me from the very get-go. When I talked about that moment in my doctor’s office when he told me I was sick, and I said my first reaction was denial. No, no, no. One of the second or third thoughts I had was just, let me live to see my daughter graduate from high school. And now I’ve seen her graduate from high school and from college, and my son’s going to graduate from high school next year, which is just beyond miraculous to me and beyond joyful. And they’ve helped inspire me to be strong at my weakest moments and to do everything in my power to get well and stay well for their sake.

So that was another thing that, you know, again, cancer I guess taught me. And then I guess the last thing that jumped out at me is the idea that bad things happen, but good things happen too. And I mean both of those in equal measure. I’ve kind of adopted this philosophy — I don’t know, maybe it’s a thing; if it is, I didn’t know it was a thing — but I call it optimistic realism. So I’m not the kind of person who’s going to pretend I’m not really sick when I’m really sick. I like to face the facts. I like to know the truth. I feel like that gives me my best chance to take appropriate action and do the appropriate treatments and follow the regimens my doctors recommend. I think that’s the best way to be practical about it. But at the same time, I try not to be cynical either or assume the worst, and that’s where the optimistic part comes in.

And so whatever the situation is, I try and take the most optimistic, reasonable position I can, given the facts. And that mentality has served me pretty well. Also, it reminds me of something I thought of pretty early on that first day. I think it was later that night, by the time I had settled down a little bit from hearing my diagnosis. I remember thinking, you know, these were the phrases that came into my head, weird as they are. I remember thinking, you know, okay, there’s a death force and we’re all going to die someday, and we know that that force is out there and it’s going to eventually get us all, but that force has never been closer to me in my life than it is right now. And then just a second later, I remember thinking, but there’s also a life force. You know we have this very powerful survival instinct as humans.

And those two forces are sort of battling it out all the time, whether we’re aware of it or not. And at that moment, I was hyper aware of it, and I just said to myself, you know, you just have to believe in the life force. And again, not because I was trying to predict anything or imagine I can see the future, but because that’s what made me feel better in the moment. That was better- that was the strategy for helping me calm down and not be completely desperate. And I’ve tried to carry over that same attitude, best I can, into the rest of my life. Sometimes I’m better at it than others, but I think I try to do that as much as possible. And to the extent I’m successful, my life is better off for it.

Shay Absolutely. You know, I like to ask all of our guests, because everyone answers it so uniquely, how they would define or describe what healing is. And I’m interested, given your story and your journey, how you would define or describe what healing is.

Jonathan Yeah, so I guess the first thing that comes to mind is there’s physical healing and there’s emotional healing. On the physical front, I guess I would describe healing — especially in a case where you’re facing a very serious and complex medical problem — as finding the best doctors you possibly can, listening to them, you know, being a compliant patient, following their advice, getting a second opinion if you’re not sure, so that you’re… whatever treatment you go into, you feel confident about, comfortable with, you know, that you feel good, that you’ve made the right decision for all the reasons we’ve already talked about. I’m a massive believer in the power of science and good medicine and good doctors. So on the physical front, that’s the first thing I’d say. I’d also say on the physical front that, you know, it’s important to take care of yourself. Of course, you know, I’m a huge believer in early cancer screening and , you know, what the appropriate ages — get your colonoscopy and get your regular, you know, breast cancer checkups and screenings.

And it’s an undeniable fact that early detection is one of the most powerful ways to prevent preventable cancer deaths. And at the same time, I also am a believer in taking good care of yourself. All the things we know right — get some exercise, get decent amount of sleep, don’t, you know, go too crazy with drugs, alcohol, any of the things we know are not good for us. And yet, as I think I wrote in the book, you know, “What’s the point of being alive if you’re not going to enjoy your life?” So I think we all have to find a balance there. You know I still, occasionally stay out too late, or, you know, maybe have one drink too many, or, you know, don’t go to the gym for four days in a row. I think you have find a balance because you’ve got to be able to enjoy your life to make it worthwhile — that’s the physical.

That’s how I think about healing in the physical sense. In the emotional sense, wow, it’s so complicated. I mean, I do- I’m not a person who believes this idea that, like well, you just have to have a positive attitude and you’ll be okay. I think that’s very unfair to a lot of patients who have an illness that no amount of positive thinking is going to cure, and it just puts an unfair burden on them and almost places up blame on them, which I obviously don’t think is a good idea. That said, and kind of going back to what I was saying about the life force and some of the other lessons I’ve learned and the optimistic realism, I do think that being positive — as positive as you can reasonably be given the circumstances — I don’t know if it’s going to change the outcome of your situation, but it just makes your day better, your minute better, your life better moment to moment.

And so that’s a big part of healing for me is, has been a big part for me, is learning to do my best anyway. As I say, I’m not always capable of it, but to do my best to remember that in part, healing means enjoying your life. And if you’re going to be fearful and miserable and scared or worried or, you know, too busy doing all the things that are required to be the so-called perfect human, perfect patient, you’re going to make things worse, not better. And that there’s a lot to be said for just enjoying time with your kids, you know, watching TV shows with them, talking about their day, playing a board game, like I say, fishing, whatever it is that you enjoy — especially at times where I’m well and not struggling physically or emotionally. I really try and squeeze the most out of those moments that I can because those feelings of joy and happiness, as I say, I don’t know what they’re going to do for you in the long run, but they definitely make your life better in the short run.

Shay Yeah. And you talk about how one of the ways your perspective kind of shifted is that you find so much joy in almost what people might call the mundane, right? Like the normal, just daily living, just the very simple things, and that you really learn to be able to find so much joy just in that and not needing necessarily always a huge adventure to find just simple pleasures.

Jonathan Yeah. I had a milestone birthday recently, and my family asked me what I wanted to do for it, and, you know, there was talk of like big party or maybe a big trip or something. And my daughter was still in college at the time and she had a play she was producing. She’s a drama major, and it was around the same time as my birthday that she was going to be staging it. And I said, “Let’s just the four of us — my wife, my son, my daughter and I — let’s the three of us go see my daughter, and the four of us spend my birthday together and we’ll see the show and we’ll just be together. That’s all I really want to do.” And then that night, or that Saturday night, everybody again started with, well, should we go to some great restaurant or something? You know what I like? I like the college cafeteria. And they have a great cafeteria where my daughter went to school. I was like, let’s just go to the cafeteria, go through the line. I’m going to pick what I want out of the salad bar. They have an international station and a pizza station and a make-your-own-burrito station. I was like, that’s what I want to do. So that’s what we did, and it was fantastic.

Shay That’s great. It sounds very well designed. Exactly. Perfect for you.

Jonathan It was almost the definition of a simple pleasure.

Shay Exactly. Well, just as we bring our conversation today to a close, I just want to give you a chance — is there any other piece of your story or really anything else from your book, “An Exercise in Uncertainty,” that we didn’t get to touch on that would feel good for you to share with those who are listening?

Jonathan Gosh, I just- I guess I would come back to the little story I told about, you know, a life force and a death force. I realize, and I’m very sensitive to the fact that there are people who have very, very grave diagnoses, and I don’t even understand where to begin in terms of sympathizing and recognizing that there’s, you know, every reason for those people to maybe not follow this advice. So I get that there is a different category out there, but if you’re lucky enough to not be in that category and there is hope of any kind, you know, being hopeful and just believing that, you know, as I said in the passage you read, tragedies happen, but miracles happen too. I mean, I’m living proof in many ways. It’s not a stretch to say I’m a medical miracle, as you noted. When I was first diagnosed, I was told I might have as little as 18 months to live, and now it’s 22 years and more later. And that to me is evidence of, you know — if I could go back, as they say, and talk to my younger self — I would’ve told him, you know, just have hope. You know? This might turn out better than you think.

Shay That’s great. For anyone listening who’s read Jerome Gutman’s book on, “The Anatomy of Hope”, there’s science behind having a hopeful outlook actually changes outcomes. So there really is some interesting work around that too. So what a lovely message to conclude our conversation with today — the importance of having hope. So what a pleasure to interview you, Jonathan. I’m so grateful to have had you on the show, and thanks for everyone who’s listening, tuning in.

Jonathan The pleasure was mine, and thank you for having me. It was wonderful.

Shay Good. So glad to hear that.

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