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When I was 26 years old, an oncologist I'd only just met told me I had cancer. My response was appropriate; I vomited. I was the first person among my peers to get a cancer diagnosis. No one knew what to say or do for me.
That's why news headlines like "Cancer Is on the Rise in Younger Adults" hit me hard. Worldwide, the incidence of early-onset cancers (those 18-49) has surged almost 80 percent between 1990 and 2019; deaths from these cancers increased almost 30 percent over that same time.
I am now a 40-year survivor, something I didn't think I'd live to see. While I'm glad researchers are working hard to understand why this rise in cases is occurring, I've found that telling my story to other young people can make a difference.
It comes up in the strangest of places, at a college reunion or a friend's birthday, and when I volunteer at Memorial Sloan Kettering Cancer Center. I can put it no other way than to say I'm transformed into a gift called hope. (Or my story is.)
Here's what happened after the oncologist told me I had testicular cancer: Over eight months, I had two surgeries and 16 administrations of a powerful chemotherapy "cocktail." I lost the beard on my face and the hair on my head, chest and pubic region. I shed 15 percent of my body weight and experienced mouth sores, neuropathy, nausea, constipation and hearing loss. I was left with two scars, a three-incher in my pubic area and the other, a 12-incher that runs from below my belly button up to my breastbone.
My cancer - which I named "Max" so that I could curse him out by name - affected every aspect of my life, from career and money to sex and intimacy, upending my mental health and my relationships. In the vernacular of young people today, it was "a lot." I would have called it "too much."
I know all too well the fear and isolation many young people with cancer experience. Cancer is always a lonely proposition, but it's especially so for young adults. The loneliness I experienced was pervasive. Older people, mostly my parents' friends, didn't understand, and my contemporaries often struggled because I had the dubious distinction to be their first friend facing a life-threatening illness. One grad school colleague told me years later, "I just didn't know how to be your friend once you were diagnosed."
Back then, I joined a support group, where almost all my "peers" were married, had kids (even grandkids) or were retired. "Issues for someone age 25 may be very different from someone 35 or 45," as well as those who are even older, Nancy Borstelmann, the co-director of Yale's Early-Onset Cancer Program, told me recently. But if there's one thing we all have in common, she said, it's the "fear about dying."
To be fair, I didn't always know what to say or do, either. I snapped at those who mindlessly asked how I was doing or even in some cases if I was going to die. My peer group just didn't know better or have much experience with really sick people. One afternoon I got into a heated argument with a nurse who was suggesting a men's "Small" for the prosthesis I needed. Like any other dude in his twenties, I insisted I was a "Large." (There were no "Mediums" available.) I responded as though this was a life and death decision. Obviously not, but I did feel as though my "manhood" was on the line. This was new territory, and we all had lessons to learn, including me.
I tried hard to wait to worry (or at least not to freak out) while awaiting pathology reports, X-rays, ultrasounds and CT scans. So much uncertainty. A nurse suggested biofeedback to me, which she explained could lessen my dependence on antianxiety drugs. I tried it and it helped. She also explained that the worst possible outcome is not the most common one. I struggled with that suggestion when she said it but time has proved her right; I remain healthy.
There were other challenges. Postsurgery I could no longer do everything for myself as I once had. That included bending over to tie my shoes or going food shopping. I needed help for the first time in my life; it took me a while to learn how to ask for it.
I didn't know how to talk about my fears. While hospitalized for two weeks I relied on a well-honed sarcasm, which pushed people away, or my ever-growing list of grievances, like the poly/cotton sheets on my bed, the robes that never cover your butt, and the size of that silicone prosthesis.
I railed at the loss of control as I tried - in vain - to reassert it. When my hair began to fall out, I cut it off preemptively. Fearing that my boyfriend would leave me, I broke up with him first.
And I blamed myself. "What did I do to deserve this?" I asked repeatedly. I had yet to learn the lesson that bad things happen to good people, or really, that any illusion of control is just that. Cancer pierced any notion that life is fair.
I also discovered that the psychological side effects of my disease could rival the physical ones. My second, more complicated surgery had a frequent side effect of affecting fertility. At 26, I'd hardly given any thought to raising a family, when a hospital social worker asked me, "Would you like a referral to a sperm bank?" (Yes, I would.)
A few years after my diagnosis, and when all my treatments were done, I left grad school in a fog of uncertainty. I wrote in my journal back then: "If I have a shorter life, I don't want to spend the next five years in this program." I didn't think about saving for retirement, buying a house, or doing any of the "adult" things my friends were now doing. Instead I bought a lot of nice sweaters, putting them on multiple credit cards. Why pay today, when tomorrow might not come?
I'd be misleading you if I left the impression that all was dark. I found a new career as a writer. I met a new signifcant other. My hair grew back! I also chose to face some weighty questions: How do I live a life that matters? How do I want to spend my time? What gives me joy?
That's the ironic thing about having cancer as a young adult: You confront the idea of death too soon, but if all goes well you have a lot of years afterward. You struggle to believe it's behind you, while still dreading its return. But time does heal some wounds. It also gave me much-needed perspective, even a sense of humor.
When I lost a job, separated from my spouse and even when a huge branch of a pecan tree almost crushed my house, I was able to say to myself, "At least it's not cancer!"
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