Below, Jonathan Gluck shares five key insights from his new book, An Exercise in Uncertainty: A Memoir of Illness and Hope.
Jonathan is a journalist who has worked at New York magazine, Vogue, and Fast Company. His work has been recognized by multiple National Magazine Awards.
What’s the big idea?
Everyone has to grapple with uncertainty, but some are dealt a hand that makes life all the more precarious and precious. Jonathan was diagnosed with a rare and incurable form of blood cancer more than two decades ago. From his health journey, he shares hard-won lessons.
1. Stay curious about symptoms.
In November 2002, I was 37 years old, an avid runner, skier, and basketball player. I was seemingly healthy when I slipped on the ice leaving my office in downtown Manhattan one night. It was a small slip—I didn’t fall, I just skidded a bit, then caught myself—but the next morning my hip hurt. I thought maybe I pulled a muscle.
After a few weeks, my hip still hurt, so I saw my orthopedist, who ordered an X-ray. The scan didn’t show anything concerning, and I went back to my life.
The following November, I realized a year had gone by and my hip still wasn’t right. Not only was it not better, but it was worse. I was having trouble going up and down stairs and getting in and out of taxis. The previous April, my wife and I had our first child, our daughter, A.J., and I was having a hard time picking her up and carrying her.
I went back to my doctor, and this time he ordered an MRI. A few days later, I went to his office to discuss the results. I was expecting him to tell me I had a strained ligament or torn cartilage. Instead, he told me I had cancer.
“Small discomforts can signal larger issues.”
Some time later, when I was complaining to my doctor about the slip on the ice and how it led to my diagnosis, he offered a different take. He called the slip an “angel’s kiss”—a signal that alerted me to my illness before it was too late to do anything about it.
He also told me I was smart not to ignore my symptoms any longer than I did, even though I had no family history of major illness or any other reason to believe I was seriously sick. “If something doesn’t add up, or doesn’t go away on its own, get it checked out,” he said.
He was right. Small discomforts can signal larger issues. Persistence in seeking answers can save your life.
2. Master the waiting game.
I’ve been sick now for more than twenty-one years. During that period, I’ve been treated multiple times with radiation therapy, chemotherapy, and various forms of immunotherapy. My illness has, so far, proven to be treatable, but it’s not curable. Although my doctors have been able to knock it back repeatedly, it will never go away. For more than two decades, I’ve been living with a sword hanging over my head. Every three to six months, I have to undergo a battery of scans and blood tests, then wait anxiously for the results. Every time I’m in remission, I have to wonder when, not if, my cancer will come back.
All stress is hard on people, but research shows uncertainty is difficult to deal with in particular ways. In one notable study, researchers found that individuals who have a 50 percent chance of receiving an electric shock experience more stress than those who have a 100 percent chance of receiving a shock. In other words, people believe the anticipation of pain is worse than the pain itself. As a psychologist I interviewed for my book put it, “The waiting really is the hardest part.”
In my experience, here are the best ways to deal with uncertainty:
- Compartmentalize (and don’t). While it’s not wise to ignore an anxiety-inducing situation, it’s not smart to obsess over it, either. I try to do what I need to do when I need to do it to combat my illness, then live my life the rest of the time as if I were well. I call it strategic compartmentalizing.
- Zen out. Research shows that one of the best ways to block anxious thoughts is to engage in activities that induce a “flow state”—the frame of mind in which you are thinking strictly of what you’re doing in the moment, and nothing else. For some people, that might be baking, yoga, or knitting. For me, it’s fly-fishing. I was a passionate angler before I got sick, but after my diagnosis, the sport became much more than a hobby. It’s a form of therapy for me.
- Lean on others. Living with uncertainty isn’t easy. Even the experts I interviewed about the subject told me they struggle to cope with the unknown. Whether it’s friends, family, a therapist, or someone else, seek support and be open about your struggles. In the years immediately following my diagnosis, I tried to handle much of what I was going through myself. As time went on, I learned to depend more on others. Having done both, I can say with confidence that the latter is wiser.
3. Decide with incomplete data.
Cancer is one giant exercise in uncertainty. Among other things, you’re forced to make high-stakes decisions without complete information. Remember the standardized test instruction? There may be more than one correct answer; choose the answer you believe is the most correct. That’s how I approach making difficult medical decisions. I gather all the information I can, from the best sources I can find, then I try to make what I believe is the best choice from among the available, albeit imperfect, options.
At one point, one of my doctors recommended I have a stem cell transplant, which is considered the standard of care for my illness. But a doctor I saw for a second opinion wanted me to try a drug-based therapy first. Because I was unusually young for a myeloma patient, he said he wanted to be careful about maintaining my quality of life and deploying the available treatment options to extend my life for as long as possible. A stem cell transplant, while effective, might have side effects that could compromise those goals, he said. That nuanced and customized approach made sense to me. That’s the path I chose, and that round of treatment induced a complete seven-year remission, the longest I’ve had.
On a less scientific note, my wife and I had to decide if we wanted to try to have a second child after I got sick. Because my first treatment compromised my fertility, we weren’t even sure it would be possible. And because of my illness, we weren’t sure it was wise, or even ethical, to bring a second child into the world when we didn’t know how long he or she would have a father. We weighed the pros and cons and decided to take our chances. We understood the downside, but decided the upside was so high it was worth the risk. My son, Oscar, is 17. He is entering his senior year in high school. It was the best decision I ever made.
4. Be honest with the people you love.
The Hollywood version of a couple going through cancer treatment together is all about unwavering devotion and appreciation. For my wife, Didi, and me, it wasn’t like that. My illness began to eat away at our relationship.
“They say cancer either destroys a relationship or makes it stronger.”
Despite the fact that Didi was a devoted caregiver, she didn’t always seem that upset about what I was going through, and that made me question how much she cared. Didi, meanwhile, felt that no matter how much she did, I never considered it enough.
Before we knew it, an ice storm formed between us. We fought constantly. We stopped going out to dinner or the movies. We rarely had sex. One night, after yet another awful fight, Didi spoke up. “This is a disaster,” she said, “We are in the midst of a huge mess. I love you, but I don’t like you right now. I know you don’t like me either, so don’t pretend you do. What the hell are we going to do?” Her courage in naming the problem led us to couples therapy, where we at least started to communicate openly.
During that process, I came to see that Didi couldn’t afford to be overly emotional about my illness. She was working full-time, trying to take care of our daughter, and living with the specter of losing her partner hanging over her. What’s more, Didi had lost her own father when she was 14 years old. He died of a heart attack in the middle of the night. The prospect of losing another person so close to her was terrifying.
Didi, in turn, came to understand why I expected so much from her. When life deals you a nasty hand like cancer, it’s hard not to feel like you deserve special treatment. Because Didi was the person closest to me, I wanted her to provide that, regardless of how busy or scared she was.
It took years, and no small amount of anger and tears, but eventually we forgave each other for how badly we had treated each other, and we began to get better at resolving our differences as they came up. They say cancer either destroys a relationship or makes it stronger. Only by learning those skills have we managed to escape with our relationship intact.
5. Pivot with progress.
Shortly after I was diagnosed, one of my doctors told me I might have as little as eighteen months to live. He also told me there were a number of promising new drugs for my illness in the pipeline. To be honest, I thought he was just trying to give me a ray of hope. But he turned out to be right. Incredibly enough, many new treatments for my disease have indeed come along since I was diagnosed, with some of them being approved only a year or so before I needed them.
“Modern science is producing breakthrough treatments at an unprecedented rate.”
Over the years, I’ve done everything I can to keep abreast of new treatments and avail myself of them. In one case, that meant traveling to Boston from my home in New York City once a month for several years, including during the COVID pandemic, to participate in a clinical trial. That trial produced a partial remission that bought me several more years.
More recently, I underwent a cutting-edge form of immunotherapy called CAR-T therapy. It’s a risky treatment that can cause serious, and in some cases fatal, side effects, and it requires two rounds of pre-treatment chemotherapy and a two-week hospitalization to administer. But it has also been shown to produce remissions of previously unseen lengths in some patients. In the summer of 2023, I decided to go ahead with it. As of this writing, I’ve been cancer-free for two years.
Modern science is producing breakthrough treatments at an unprecedented rate. If you keep up with those treatments and are lucky enough to be able to access them, they can work miracles. I’m living proof.
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