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Last month, at the age of 33, I was diagnosed with Stage 3 kidney cancer. Within minutes of the diagnosis, I read online that there is a 53 percent chance that I’ll still be alive in five years.
That’s a ton of information to take in, but it also says almost nothing at all. Fifty-three percent? Maybe it’s the kind of 53 percent that is actually much closer to 100 percent or maybe zero. I keep trying to solve the survival rate, as though it’s a riddle that can be worked out with enough persistence.
Since the diagnosis, my mind has been a pinball machine. My thoughts have pinged back and forth and eventually always head toward the same-sloped corners of memories.
When I was a kid and our family was anticipating a trip to see the Mets play in Queens, my father would check the extended weather forecast a week in advance. He would announce the results of his investigation at breakfast, and like clockwork he would immediately lament that at seven days out, the forecast was only about 50 percent accurate. May as well flip a coin, he would conclude.
Of course, that presumes that there are only two outcomes in weather: sunshine or rain. Coin flips don’t have much to say, for example, about a hazy day with high humidity, or rainy and then clearing. In the case of surviving cancer, the path can be construed as binary: to die or not, or it can remain forever in the realm of living with a chronic illness with the threat of death lurking all the time. This is hard to accept. Human beings are complex, discerning creatures, but we’re just not built to live contentedly with the uncertainties of an unclear prognosis.
As a practicing psychiatrist, I operate within this dilemma every day. There is tremendous uncertainty within medicine, even more so when mental health is involved.
My subspecialty of neurotherapeutics involves using a treatment for depression called transcranial magnetic stimulation (TMS). It’s a form of brain stimulation that uses powerful electromagnetic pulses to change the excitability of certain parts of the brain that we think malfunction in depression.
It’s not for everyone, though. Getting TMS is kind of a big deal because it is time-intensive and very costly. The treatment course involves hourly sessions five days a week for several weeks, so only people who have already tried at least a few antidepressants without success will qualify. And in this population, just about half will have a clinically meaningful response to TMS.
When I sit with patients to explain the procedure, they generally want to know one answer above all others: Will this make me better? Depression is a cruel disorder, and these patients want to know if there is hope.
"Well, we can’t know in advance if you will fall into the half that responds," I say. Patients are usually tremendously dissatisfied with this kind of statement. Often, I feel pressured to soften the cold, hard, uncertain truth with additional facts that may actually only further muddy the prognostic waters:
"You are young and healthy, so that is a good sign, but your symptoms have been occurring for more than two years and you have anxiety alongside your depression, a combination that is less well studied." In the end, we land back on the coin flip. "The only way for us to know how you will do with treatment is to try it."
I tell myself the same: The only way for me to know if I will survive this cancer is to try. Like roughly half of my patients, I may find out the hard way that I’m on the wrong side of this 50-50 split.
The weather doesn’t care about a ballgame any more than my cancer cares about my son just turning 1 year old.
Still, I want more information. The more I learn, the more uncertain I become, which drives me to seek still more insight. All of this searching doesn’t put me at peace with my diagnosis, but sometimes, even just for a moment, it can provide the sense that I have an understanding of this disease and maybe even a shred of control over it.
I continue to look endlessly for an answer to my prognosis for the same reason that my father would rather look at a weather report with 50 percent accuracy than flip a coin. People almost always seek more information even when it serves no true function beyond self-deception.
I’ll never know why the cells in my left kidney began to mutate and grow beyond their limits, and I won’t know how this turns out until it’s too late to be a premonition. The weather doesn’t care about a ballgame any more than my cancer cares about my son just turning 1 year old. The cruelty of 50-50 odds is that they don’t care about you at all.
It’s hard to know how to proceed when your life has been rocked in the way that mine has. I know I’m not nearly the first nor the last to go through this kind of physical and emotional tumult. How do people cope? It seems to me that there is no one answer to this question.
When I was recovering from surgery, I tried binge-watching a highly recommended show. I couldn’t focus and kept feeling like I was wasting my time on something trivial when I don’t know how much time I have left. That’s true of all of us, but seems particularly menacing these days. Shouldn’t I be trying to fill my life with purpose instead of watching a TV show?
I started reading a book about the meaning of life. It made me feel depressed. The life I have is already filled with meaning.
Walks outside with music in my ears seem to help, as do talks with the very empathic therapist I started working with after my diagnosis.
Time with my wife and family is more precious than gold to me. Brief moments when I can make my son squeal with laughter are a magical but temporary respite.
But like a stitch, interwoven throughout my entire day, thoughts about my cancer are always present at some level in the background.
It has been good to be in touch with friends and family, many of whom I have not been close with for years. Everyone tries to be supportive in whatever way they know how, and I try to be positive while remaining honest with them.
In our emails, with every clinical update and ongoing uncertainty, there is a phrase that I find myself using time and again: And now, we go forward.
Adam Stern, MD, is a staff psychiatrist and director of psychiatric applications in the Berenson-Allen Center for Noninvasive Brain Stimulation at Beth Israel Deaconess Medical Center. He is an instructor in psychiatry at Harvard Medical School.
This segment aired on March 2, 2018.
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