In 1965, at the age of 18, I walked into student health services at my university and told a physician I had pains in my chest when I drank alcohol.
Some doctors might have admonished me. Thankfully, he knew of a rare but characteristic symptom of lymphoma, ordered a chest X-ray, and told me to come back after final exams.
Thus began my 55-year journey through cancerland. I lived there as a patient, a survivor, a person living with cancer. Now I face death from another cancer caused by the treatment that saved me all those years ago. Am I still a survivor?
After final exams, I went to the hospital. An oncologist told me I had Hodgkin lymphoma, which most people regarded as almost inevitably fatal. With breathtaking confidence, he said a new treatment — radiation — would cure me. At age 18, I believed. My parents, as I now know, were terrified.
By 1973, I was a cancer cure, going to medical school, a triumphant example of medicine’s advances. That idyllic period lasted through the millennium. The idea that my miracle cure would give me three more cancers, including the incurable one with which I am now living, was unimaginable. Cure implied permanence.
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Scientists and doctors now know that I was invisibly scarred for life, my DNA burned by lifesaving radiation. In those 55 years, I’ve had thyroid cancer, breast cancer, a heart valve replacement, and a pacemaker — all in the days before these became recognized late effects of radiation.
With such nuclear disasters as Three Mile Island and Chernobyl in mind, I wondered whether my thyroid and breasts — in my radiation field — might have been affected. “Too long ago,” doctors said when I asked about a connection. “Nothing is known.”
Cardiologists told me I had palpitations because I was anxious. Years later, a medical journal described my symptoms as radiation-induced. I could hardly blame doctors for not knowing, but perhaps for not listening or considering.
I declined to participate in cancer survivor events. I didn’t think I was a “real” survivor. I had never had chemotherapy, so I never vomited, lost my hair, or ingested toxins. Cancer was my past medical history. I shared it when appropriate with my patients, to offer hope.
But in 2017, I began to have symptoms that neither my medical training, my physicians, nor my CAT scans could explain.
Uncharacteristically for me, I typed “Hodgkin survivors” into the Facebook search field and up popped a closed group of more than 500 people around the world who had my symptoms and more. Their stories actually made me feel lucky. I had 30 years of cure without worry and needed only one new heart valve in that time.
Then came a 30-pound weight loss, a biopsy, and four CAT scans that changed everything.
In October 2018, when I was 71, an oncologist told me that I, a nonsmoker, had lung cancer, which had already spread, encasing my previously damaged heart. The cancer, presumably a result of that 1965 radiation, could not be cured. The best he could do was help me have more good days than bad. He said I was the “humbling legacy” of medicine’s efforts to treat cancer.
“Humbling legacy.” I asked him to repeat the words, as they sunk in. Humbling — the adjective for him, the physician. Legacy — the noun for me, lung cancer my inheritance for 50 more years of life.
My story is a warning for medicine: Today’s cures may be tomorrow’s illnesses.
Ten years after my radiation treatment, I was one of 3.6 million cancer survivors, according to the National Cancer Institute. Today, there are 15 million survivors, ranging from those who’ve just been diagnosed to those who have been cancer-free for decades.
For many years post-radiation, living a full life, I felt like a real survivor.
Who am I now? Hodgkin cure. Breast cancer cure. Treated heart disease, able to exercise. Untreatable lung cancer. Exercise very limited by shortness of breath.
Survivor? Surviving — every day, figuring out what that means. Seasons of survival, the phrase of a fellow physician cancer survivor who just died of lung cancer 45 years after his chest radiation. Am I spring, summer, winter, or fall, and which is which?
If I had been told in 1965 that I might get lung cancer in 2018, would I have declined treatment? Of course not. I would have been glad to live to 73, which seemed very old.
Did I reject the three-drug chemotherapy regimen for my lung cancer intended to give me a few months or a few years? Did I even read about it? Of course not. But during that treatment, on the couch, good days did not outnumber bad.
My oncologist was honest and clear. He wasn’t sure the treatment was doing anything other than violating that “more good days than bad” pledge. Eight months ago, I stopped standard treatment, and I dropped out of an early clinical trial when it made me ill.
Today it’s just me, my immune system, and palliative care to control symptoms.
Very old I’m not, but I’ve had to adjust to new meanings for my life. I no longer volunteer at an immigrant clinic or buy theater tickets for a month from now.
I’m angry, I hate every moment of being sick, I wake up at night and want to throw things around the room, but my husband is already doing enough without having to clean up that mess. I haven’t achieved a state of bliss where I don’t miss being able to ride my bike, read restaurant reviews, and think it would be fun to eat out. I worry that a new day will bring a new symptom, and sometimes it does.
I don’t read too much about the 2020 election, and I soak up the love and support offered to me. I feel like I’m attending my own funeral — people say things they were waiting to say for years — an odd sort of privilege. The apologies aren’t necessary. What I like best are the compliments, words of thanks, admiration. I’m glad to be alive to hear them. We should all hear more of that.
In January, I sit in the oncologist’s office and accept his recommendation for hospice care. I want to receive the best life-affirming care I can, hopefully in the comfort of my home. I’m very clear I don’t want to vomit from chemo that might extend my life a month.
Humbling legacy. More good days than bad. Cure. Medical miracle. Survivorship. Fifty-four years. Whoever imagined? And what would I change?
Gene Bishop is a retired physician who lives with her husband in Mount Airy.