I spent a lifetime afraid that I’d get sick, and by sick I mean, sick. And by that, of course, I mean cancer. Why so fearful? A girl in my tiny high school class of 22 kids died of lymphoma in the middle of our senior year. The melodrama rearranged my teenage nervous system.
I went into a full-blown panic whenever my lymph nodes swelled. I used organic dental floss. I stopped dying my hair and embraced the gray—after going through the five stages of grief at losing my dark brown locks. I drank water from aquifers in countries that hadn’t yet encountered the Industrial Revolution. I was vigilance made flesh. Still, one night in 2017, I found a huge lump in my armpit.
I was on the couch, alone, awash in existential fear.
I didn’t scream when my fingers touched this distinct ball under the skin, but my eyes bulged in shock—a cartoon character with her finger in a light socket—and my heart and stomach did somersaults. My husband was in the next room reading, and I was on the couch, alone, awash in existential fear.
I did what you are supposed to do when you encounter one of the Seven Warning Signs, which I had memorized at the age of 17. At 9:01 the next morning, I made an appointment with the nurse practitioner in my all-women doctor’s office. Several hours later, she gasped when she felt the thing in my arm. “It’s huge,” she cried. “We’ll get it looked at.”
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Down the Cancer Path
So began a trek through New York City’s medical industrial complex that dragged on for three months before I was diagnosed with lymphoma. Early doctors insisted the “swollen” lymph node was reacting to a nearby infection and would shrink soon. They dismissed a radiologist’s recommendation for a PET scan. “It’s too invasive and expensive,” said one. Women doctors told me they were concerned about my “anxiety.” Another doctor in another office who felt the lump exclaimed, “Wow, that’s huge!” but did not order a biopsy. He too wondered why I was so anxious.
He too wondered why I was so anxious.
I stumbled on my own through this thicket of dismissals and medical gaslighting until the diagnosis. A friend passed on the name of a legendary doctor in the field—who participated in no insurance networks. I could only afford to see him because I had the immense good fortune to have upgraded my freelancer’s insurance once I found the lump. I was now paying a premium of $1800 a month so I could choose my own doctors and get out-of-network benefits. I could afford this for several months but not for long.
There are some 80 kinds of lymphoma, and my own is considered treatable. But when the oncologist did genetic testing to determine the right chemo for what were now three malignant lymph nodes, he learned I am positive for a gene that makes me resistant to chemo—and he was “spooked” by this. There was no research on how this gene could be overridden. His plan was a shot in the dark: six rounds of five-days-in-the-hospital chemo. It was my turn to gasp.
The Wheels of Medicine
Every illness saga has many chapters, and my experience is that others mostly want to know the punchline: Did you make it or am I reading something posthumous?
I made it. I didn’t do six hospital stays of five nights each—only one hospital visit. The chemo responded even with my wonky gene. I kept the $1800-a-month premium for six months, then switched to another doctor in the office who accepted ordinary insurance.
Cancer can be a dagger as well as a boomerang.
Along the way, a close friend who was a 38-year-long breast cancer survivor gave me some advice I held closely: “Being sick will make you humble, and you will learn something from it.” Humility was easy, but it was hard to get a grip on what I was learning, except that just about everything to do with cancer was misery. When I considered the predictable lessons—live one day at a time, cherish good moments, invest in gratitude—I shrugged mentally. I knew that stuff. And I knew my friend meant me to take away something less obvious.
I was never quite sure if I’d come upon one giant lesson or a series of small ones. Would they arrive with labels and exclamation points, or would I notice them in the rearview mirror as they floated away? It became something of a parlor game, being on the lookout. But come they did, in different shapes and sizes. Even now, in excellent health five years later, I’m sorting through them for anyone facing what might be the C-word, which is sometimes still hard to get out of my mouth. And because I know I am talking as much to myself as to others. Cancer can be a dagger as well as a boomerang.
Act quickly when you encounter a problem—because the wheels of medicine move slowly, and you need to keep pushing them.
Sadly, tragically, money and moxie matter.
Doctors hate giving patients bad news almost as much as patients hate hearing it. Until you’re in an oncologist’s office, there’s often a lot of dancing around what might be wrong. Cutting-edge technology detects all kinds of illnesses, but it costs money—and doctors often avoid “going there” unless everything else has been ruled out.
And first, last, and always, don’t let anyone tell you that your problem is your anxiety when you suspect something else.
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Elizabeth Benedict’s latest book is Rewriting Illness: A View of My Own. Her books include National Book Award finalist Slow Dancing, the bestseller Almost, and The Joy of Writing Sex: A Guide for Fiction Writers. She edited the NY Times bestseller What My Mother Gave Me: 31 Women on the Gifts That Mattered Most and Mentors, Muses & Monsters: 30 Writers on the People Who Changed Their Lives. She writes about sexual politics and culture for Salmagundi, and her essays and articles were chosen as “Notable Essays” for five editions of Best American Essays.