← All Of It with Alison Stewart
All Of It with Alison Stewart
Memoir and Biography Week: Living with an Incurable Cancer Diagnosis
00:25:15
Jonathan Gluck discusses his new memoir about living with a terminal illness, 'An Exercise in Uncertainty: A Memoir of Illness and Hope.'
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- [00:08]
Alison Stewart
This is all of it on wnyc. I'm Alison Stewart. Coming up on the show tomorrow, we'll speak with Eva Victor, the writer, director and star of the film Sorry Baby. It's kind of a dark comedy about friendship, the emotional fallout from sexual assault and how humor can help us get through the pain. Plus, writer Stephanie Wambagu about her new novel Lonely Crowds follows two best friends who find their relationship challenged as they both pursue artistic success in New York city in the 90s. That's in the future. Let's get this hour started with an exercise in uncertainty. When Jonathan Gluck was 38 years old, he had a wife, a baby and cancer. He was on the fast track at work. He was the deputy editor at New York Magazine. But after a fall on the ice in 2002, his hip didn't get better. He had an MRI, which revealed a tumor. He was diagnosed with multiple myeloma and given 18 months to live. Well, Jonathan Gluck is sitting across from me right now, and he has been through a lot. His story is told in his new book, An Exercise in A Memoir of Illness and Hope. Publishers Weekly said of the book, Gluck offers sharp reflections about the taxing uncertainty of life in remission, candidly recounting fights with his wife, about her stoicism and acknowledging the that given his cancer's incurability, he feels as though I'm locked in a basement that's slowly filling with water. Readers grappling with difficult diagnoses for themselves or their loved ones will find Gluck's perspective refreshing. Jonathan, welcome to all of it.
- [01:48]
Jonathan Gluck
Thank you, Alison. I appreciate it.
- [01:50]
Alison Stewart
It's so nice to see you.
- [01:51]
Jonathan Gluck
It's nice to see you.
- [01:52]
Alison Stewart
So if I came up to you and I said, hey, how are you doing? One, what would your answer be to someone you hadn't seen in a long time, like me? When our parents, we were parents together, when our kids were in school, in elementary school, I always said he hey, how are you? Versus someone who has known what's been going on with you for 20 years? How would you answer, hey, how are you?
- [02:12]
Jonathan Gluck
Yeah, that's a great question. I guess I would say I'm miraculously okay. And what I mean by that is I am at the moment in a complete remission. The course of what's happened to me has basically been because my disease is incurable, but it has miraculously enough proved to be treatable. I, I get sick, I get treated, I go into remission, maybe for a short time, maybe for a Long time, maybe a partial remission, maybe a complete remission. I get sick again, and we keep going through that cycle. So at the moment, thanks to a very mind blowingly kind of futuristic treatment that I had two summers ago, I am in a complete remission. And I have been for a couple of years now, what I have will come back. But at the moment, as I say, I'm miraculously well.
- [02:56]
Alison Stewart
Could you please explain to me what multiple myeloma is?
- [03:00]
Jonathan Gluck
Yeah, it's alternately referred to as a blood cancer or a bone marrow cancer, and it's a disease of the platelets, which, as you know, is a component of your blood. And those blood cells, essentially, as in any cancer, begin to grow out of control. What happens typically with multiple myeloma is that causes lesions on your bones. That's how my disease presented with a lesion on my hip that I stupidly ignored for roughly a year and then finally got reexamined and got to the bottom of what was going on. And it can cause lesions all across your bones, generally presents as bone pain, and can cause a whole cascade effect of other things. But that's the primary symptom and primarily the symptom I've had.
- [03:47]
Alison Stewart
You're a writer. How soon did you become an expert in blood cancer? Because you write about it in the book a lot. And I imagine your brain initially in some way went there.
- [03:58]
Jonathan Gluck
It did. And, you know, that's sort of, I guess, an advantage and disadvantages of being a journalist is that, you know, people often warn you these days, you know, when you get sick, don't go on the Internet. I definitely had some issues with that early on, seeing some images of people who had the same condition I have that were not the most welcome images. And on the other hand, I think it was an advantage to be a journalist. I knew how to research issues concerning my illness. I knew how to get on the phone and be sort of determined to find the best doctors and the best hospital where I could be treated. So that definitely had some advantages and maybe a disadvantage or two.
- [04:38]
Alison Stewart
All right, so I'll ask you some questions that a journalist would know. Who is the classic patient who gets multiple myeloma?
- [04:45]
Jonathan Gluck
Yeah, not me. And what I mean by that is it's typically somebody who is older than I was when I was diagnosed, and it was quite unusual, not unheard of, but quite unusual for me to be diagnosed when I was. I also have no risk factor, no risk factors for cancer. Multiple myeloma doesn't tend to be extremely associated with hereditary influence. Or genetics. Nevertheless, I didn't have any history of cancer in my family. I didn't smoke or drink heavily or, you know, do anything else that would have predisposed me to this as far as I knew. Although I've since found out a little bit more about that. And it's possible I did have a risk factor.
- [05:29]
Alison Stewart
Oh, yes, explain.
- [05:32]
Jonathan Gluck
So I lived and worked not far from ground zero after 9 11. And initially, as we know, Christy Whitman and other members of the Bush administration tried to tell us all that the air was safe. We've come to find out that was not the case, if it was anything but safe. Thanks to Jon Stewart and other advocates of this issue, we now know that, as I say, the air was not safe and that many, many people have gotten sick and require care or passed away from exposure to all the chemicals that were burning there for months. Benzene, one of the chemicals in jet fuel, was one of the primary components of that toxic mix of smoke. And that is a primary cause of multiple myeloma. A well known cause of multiple myeloma.
- [06:21]
Alison Stewart
You're not on the 911 registry list because of a block or two.
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Jonathan Gluck
A block or two? Yeah. There is a line drawn at Canal Street. You have to have lived or worked below Canal. I lived and worked. Not much above Canal, but I understand. I mean, you've got to draw a line somewhere for government purposes, for bureaucratic purposes, just for administering to this thing. I get it. On the other hand, we all know that there's no magic wall at Canal street that prevents the smoke from, you know, wafting up a few blocks higher. So, you know, I'll never know exactly what caused my illness, but that's my strong inference.
- [06:59]
Alison Stewart
John, when you heard that the average diagnosis, the average time after diagnosis is 18 months to death. First of all, what emotions did you have?
- [07:10]
Jonathan Gluck
Yeah, so I went through the classic, you know, five stages of grief, I think, all in about two minutes. You know, the first was denial. I mean, the very first words out of my mouth were literally, no, no, no, no, no. I said no five times. That's how intense my denial instinct was. And then the next thing I said, and you mentioned that I had had a seven month old baby daughter at the time. My wife and I, it was our first child. My next words, again, all this coming out involuntarily, were, it's not possible. I have a seven month old daughter. Next thing I did was, strangely enough, I called my boss to tell her I wasn't going to be at work that day. I didn't tell her why. But in retrospect, I think that was sort of a form. I just wanted to sort of pretend everything was as normal. You know, I had a cold or something, you know, I couldn't go to work or. I also have come to realize it was a way just to put off telling the people I really cared about and loved by almost a mini rehearsal or something. Telling, again, I didn't tell her why I wasn't there, but wasn't coming in. But it gave me a minute or two to sort of inch my way toward telling people who I knew it would be much more difficult to tell.
- [08:22]
Alison Stewart
Given what you know about your experience with cancer and your treatment, what question did you ask your doctor that you now know is kind of unreasonable?
- [08:33]
Jonathan Gluck
Yeah, it's actually the question that led to the title of the book, and I'll explain what I mean. So it actually took months to diagnose me. One of the things I learned early on is that, you know, cancer is. We think of it as a monolith until we're in this world. And it turns out it's anything but. There are many, many types of canc, as we know, and many, many subtypes and subtypes of the subtypes. And a lot of the symptoms and frankly, test results, whether they're scans or blood work, overlap. So it can take quite a while to get an accurate diagnosis if you have a complex cancer or something that isn't immediately clear. After a couple months, I finally got steered to the right doctor, a hematologic oncologist. Not a discipline I even knew existed prior to this, but now I sure do. And he very. In maybe our first conversation, maybe our second, I said to him, so, what's the outlook? And he was very realistic and told me that at that point in time, people. I might have as little as 18 months to live, as you say, maybe as much as three years. But he said there were also a tremendous number of new treatments coming down the pike, coincidentally, really, just out of sheer luck for exactly what I had that he felt quite optimistically, could keep me going. And so I said, well, going for how long? And what are those treatments exactly? Ask him a bunch of questions, and pretty much every answer he had came with a hedge of one sort or another. Well, it could be this, could be that. We're not sure about this, but we think that. And that's when I came to realize that cancer is an exercise in uncertainty. And I had written that little bit of dialogue into the book. And my editor, when he Read the manuscript, said, you know, I think that's your title. And, you know, I think he had a great idea.
- [10:22]
Alison Stewart
My guest is Jonathan Gluck. He's written a book called an exercise in uncertainty, A memoir of illness and cancer. Excuse me. Illness and hope. Excuse me. It's about his life, living with cancer. What experience did you have with cancer before your experience with cancer?
- [10:39]
Jonathan Gluck
Very, very little. You know, again, I was young. I didn't have a family history. I wasn't aware of a couple of people in my life, but nobody I had been super close to. So I was about as naive and ignorant as you could be at the beginning.
- [10:53]
Alison Stewart
Did you think you had control in any way?
- [10:56]
Jonathan Gluck
I sure tried. And at every turn, I was trying to gather information and, as I say, find the best doctors and do everything I could to bring this under control and to give myself the best possible chance at a good outcome and to do something. I mean, one of the things that I've come to find out is the worst kind of experience you can have during these times is the waiting when you don't know what's next, when you don't know exactly where your cancer stands. And in some ways, I prefer to just know, even if it's bad news, or prefer to know what the next treatment plan is going to be, even if it's a very daunting treatment and I have been through some daunting treatments. Knowing at least gives you something to engage with and to start working on. Sitting there in limbo is difficult.
- [11:52]
Alison Stewart
Yeah. There's a whole section of the book called limbo, and I'm going to read it because you said you didn't want to read it.
- [11:57]
Jonathan Gluck
You've got a much better reading voice than I do. I'm deferring to the expert.
- [12:00]
Alison Stewart
This is really interesting. You write. Most cancer stories take one of two forms. He or she fought valiantly and died, or he or she fought valiantly and survived. The narrative of those of us who live with active cancers for unprecedented and traces its own arc. He or she fought valiantly is still fighting and will be fighting for as long as he or she lives. For some people who are diagnosed with cancer, the disease is part of their life. For those of us destined to live with cancer as a permanent condition, it is our life. So what do you do when you're told that you will be sick forever? That no one can say for how sure how your illness will play out or for how long you will survive, that there's no going back to your previous life, no matter how hard you pray or how earnestly you wish for that. How do you navigate that shocking new reality? How do you live with uncertainty when uncertainty isn't just something we all deal with some of the time, but it's something you deal with all the time. Because cancer is a nuclear bomb, not a conventional weapon, the fallout is widespread. Aye, aye, aye. You had a lot of treatments. Could you list just a few?
- [13:19]
Jonathan Gluck
Yeah, let's see. I've had radiation therapy four times, three or four weeks each. I've had chemotherapy twice. I've had 1, 2, 3, 4, 5, 6, 7. I've had been on seven different types of immunotherapy drugs. And just two summers ago, as I mentioned, I had this, a wildly futuristic form of immunotherapy treatment called CAR T therapy, which is kind of out of brave new world or something incredibly scientific.
- [13:53]
Alison Stewart
We got a text about that. Somebody said, what is the wild, mind blowing treatment he had two years ago? So go into it.
- [13:57]
Jonathan Gluck
Yeah, great. I mean, the way it works basically in lay terms is they take your T cells and separate them from your blood. Your T cells, as we know, are a basic building block of your immune system. They send those to a lab and in the lab, it takes them a couple months to bioengine, bioengineer them with a molecule that knows how. And then they put those cells back into you eventually. And that molecule knows how to sort of seek out and destroy your cancer cells. What I mean by that is it can distinguish between your cancer cells and your healthy cells and attach itself and the newly engineered T cell to your cancer cells. And the T cell, meanwhile, has been turbocharged to make it an even more powerful cancer cell killer. So I had that treatment. It is quite involved. There are months of preparation involved. I had to be hospitalized for four days for a round of chemotherapy just to prepare me for that treatment. I was in the hospital for a little more than two weeks to have the treatment. It can come with very serious side effects. I was incredibly fortunate not to experience them in a serious way, but rather quite mildly. And as I say, I've been, miraculously enough in remission since that.
- [15:11]
Alison Stewart
My guest is Jonathan Gluck. The name of his book is an exercise in Uncertainty, A Memoir of Illness and hope. We'll have more after a quick break. This is all of it. You're listening to all of it on wnyc. I'm Alison Stewart. My guest in studio is Jonathan Gluck. He has written a book about his life as a cancer patient. It's called An Exercise in a memoir of Illness and Hope. This is a question. Did you find yourself navigating between, yo, there's nothing wrong here. No problem versus I have cancer, damn it. The two different sides of your disease.
- [15:57]
Jonathan Gluck
Yeah. From the start and up till this day and all 20 years in between. You know, I write in the book a little bit about a sort of strange thing that happens to me, which is every once in a while, you know, without seeing it coming, something will remind me of a very powerful or poignant moment that I've experienced along the way. Sometimes an upsetting one, sometimes a happy one. And I have this strange involuntary reaction where I literally shake my head as if to say, like, I cannot believe this has happened to me or that this is my life. And it's happened quite a few times enough that I've noticed it over the years. So that's the, like, this is impossible, it's not happening to me, you know, kind of reaction mixed with, yep, this is happening to me. And no matter how much I try and run from it, eventually it surfaces.
- [16:46]
Alison Stewart
Let's take a call. Marcia called in. She's been listening to the conversation. Hi, Marcia. Thank you for taking the time to call, all of it.
- [16:55]
Marcia
Thank you, Alison, and thank you for this conversation. It's very relevant to me. I'm a lung cancer and uterine cancer survivor, so that's even a hard word for me to say because I still have something growing right on top of where the lung cancer was in my lung and my. Where they resectioned the lung. And because of its location with veins and arteries and whatever, they cannot reach it. During almost six biopsies, a variety of interventional radiologists and pulmonologists, and I've been juggling with the other shoe's gonna drop any moment to today. I feel good, and that's good. That's the life that I live. And I try to stay mostly on today. I feel good because really living in the place of the other. Sorry, there's an ambulance.
- [17:57]
Alison Stewart
Yeah, I understand what you're saying.
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Marcia
Living in the place where the other shoe is going to drop doesn't allow me to actually experience anything in the present moment, which is all I really have. I just wanted to share that.
- [18:10]
Alison Stewart
Marcia, thank you for calling in. Do you recognize what Marcia's talking about?
- [18:13]
Jonathan Gluck
I sure do. And I'd also add my thanks for calling in, Marcia. And first and foremost, I'm sorry you've been through this and I wish you well. In the course of researching my book, I spoke to a woman who's a sociologist at the University of California, Riverside, named Kate Sweeney, who has made studying this kind of uncertainty and living with these kinds of scary things hanging over you, honestly, her life's work. So she is maybe the world's leading expert on this subject, certainly one of. And one thing I learned from her is she told me about this study they've done where people were split into two groups and told they were going to receive a small electrical shock. And a huge majority, I don't remember the exact number, very quickly, again, I don't remember how long, but not long. Said, you know what? Just give me the shock. Because they didn't know which group was gonna get it and which wasn't, which is fascinating when you think about it. People would rather have the bad outcome and just have it over with than have to wait. Waiting and living in that state of limbo is extremely difficult for humans. So I said to this woman, Kate Sweeney, well, what should people do about that? And she said, they've done a lot of research on that also. And common sense things can help, like distract. Distracting yourself by taking your mind off of things with something even small. Watch a television show, read a book. But the best thing is to get yourself deeply engaged in an activity, in the flow state, as we say these days, sometimes, or in the zone. For me, that's fly fishing is my hobby, and that gets me immensely absorbed. For other people, it's baking or yoga or it doesn't matter what. And the goal is to drive those dark thoughts out of your mind, basically. And just as you're saying, Marcia, that's what to get back in the present moment and not dwell deeply on the what ifs.
- [20:03]
Alison Stewart
You're a writer, you're an editor. When you sat down to write this book, what was one of those sneaky obstacles that got in your way as you were writing?
- [20:12]
Jonathan Gluck
Yeah, for me, I would say it was way back at the beginning. Even before I started writing the book. I knew my story was interesting just because I'd written about it a little bit before and seen a quite a nice response, and that people had a lot of questions, wanted to know more. But I also knew it was in some sense conventional that there are a lot of people who have cancer. A lot of people have written memoirs about it. So I was looking for something new and different. Eventually, what came clear to me is it's related to that passage you read a bit earlier, that I'm not a traditional cancer patient in the sense that I'm not either. Wasn't diagnosed and Cured quickly. Nor fortunately was I diagnosed and passed away quickly. I'm part of this new cohort, and really it's a new cohort in all of human history when you think about it, because of all these medical breakthroughs we've luckily had with respect to cancer care. Those of us, as I say, who are living with these illnesses for many, many years and going through many often difficult and debilitating treatments and all the fallout that has on our families and our careers and our finances and our friendships and everything else, getting used to living this way with a sword hanging over your head for years, if not decades, that's a really new phenomenon. So again, that's where the journalist in me kicked in and thought, this is new, this is newsy. There are many people who are experiencing this, who are in this cohort. I'm in. I call us cancer zombies. Regular zombies are people who are half dead and half. Well, cancer zombies are people who are half sick and half not. And we're death to be that way forever. The same way zombies are destined to wander, you know, this limbo state forever.
- [22:00]
Alison Stewart
All right, I'm not gonna ask you about being a cancer zombie. I'm ask you as a writer and editor. I asked you for your five books that you could add to our summer reading challenge. We're not even gonna talk about cancer in this. All right. Your classic book that you picked was Moby Dick.
- [22:15]
Jonathan Gluck
Why I said I'm a fisherman and I'm embarrassed that I've never read the ultimate fishing book. And not to mention one of the ultimate pieces of literature, period.
- [22:23]
Alison Stewart
The next book you gave us, a New York based book, Lush Life by Richard Price. He's the best.
- [22:29]
Jonathan Gluck
He's the best. And you know, for me, as a longtime New Yorker, somebody who's lived here for 35 plus years and someone whose parents came from New York, it just is one of the books that gets New York right. You know, what it's really like to live here, what it feels like to live here, who the characters are who live here. I always come back to it. I've read it two or three times when I feel like I really want to learn both as a writer and as just a New Yorker. You know, how to nail it.
- [22:57]
Alison Stewart
Your memoir you picked was Care and Feeding.
- [23:01]
Jonathan Gluck
Yeah, that's Laurie Wellover and she was Anthony Bourdain and Mario Batali's assistant. And there's certainly plenty of juicy restaurant world gossip and that's interesting in its own right. And she writes beautifully and deeply about that. You would Think it might be sort of a tabloidy subject. And it is on some level, but she just writes so intelligently about it. It's really compelling. And she's also brutally honest about her own struggles with addiction and other issues. And something I certainly strive to do in the book I wrote is be equally honest about what I've been through. And I really appreciated all that about her book.
- [23:43]
Alison Stewart
For your debut, a friend of yours wrote a book called Bad Summer People.
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Jonathan Gluck
Yeah, my friend Emma Rosenblum. We worked together at New York Magazine. She wrote this deliciously wicked satire, very funny, very smart, about Fire island and a sort of wealthy enclave on Fire island that is just a perfect summer beach read.
- [24:04]
Alison Stewart
And your fifth book you wrote, this was so cute. You said, I'm gonna cheat because it came out in 2024, but I found the end. The paperback came out in 2024.
- [24:14]
Jonathan Gluck
Oh, thank you, Alison. I appreciate it. Yeah, so we're not even cheating. Yeah.
- [24:17]
Alison Stewart
This is Miranda July.
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Jonathan Gluck
Yeah, all fours. My daughter actually suggested it to me, and I was just blown away. I mean, you talk about candid. It's a novel. But you sort of, as often people do, can maybe rightly, maybe wrongly read into the idea that some of the thoughts that her main character has are maybe thoughts and experiences that she's had. And it's just. Just incredibly honest and original about the interior life and thinking of her main character just mind blowingly. I guess modern is the first word that comes to mind.
- [24:59]
Alison Stewart
Those are Jonathan Gluck's five picks for our summer reading challenge. Or you can read his memoir. It's called An Exercise in Uncertainty. A Memoir of Illness and Hope. Jonathan, it is really nice to see you again.
- [25:14]
Jonathan Gluck
It's wonderful to see you, Allison.