When does a cancer patient become a survivor?
In this excerpt from her new memoir, Healing: When a Nurse Becomes a Patient, Theresa Brown, AB’87, PhD’94, reflects on the complexity of breast cancer remission. For more on Brown’s work, see “Health Care from the Other Side.”
Stay Alive was a popular board game I played as a child, a much simpler game than Immortals, the one the kids bought for Christmas the year of my diagnosis. In the old TV commercial for the game, four children on a beach see it wash up with the tide and decide to play. The gameboard is a square plastic platform that consists of orderly rows with holes. Strips of flat plastic that crisscross under the gameboard have irregularly spaced holes and tabs on both ends that stick out from the four sides of the board. Those tabs move the plastic strips back and forth as players push and pull them, opening up and closing off holes. To start, players place their colored marbles randomly across the board and, on every turn, pull or push one of the levers, hoping to sink other players’ marbles and leave their own. The player with only her own marbles left on the game-board wins. In the commercial, a kid, wearing a bucket hat, is the one with a marble still on top. He says, his voice inflected with surprise and awe, “I’m the sole survivor.”
Now we have Survivor, the TV-show franchise that pits very fit strangers against one another on a beautiful and understood to be deserted island. One by one, or so I hear, contestants get voted off the island. I’ve never seen the show, but I wonder if at the end the one person remaining says, voice tinged with surprise and awe, “I’m the sole survivor.”
We also have survivalists, people with bunkers in their backyards or basements stocked with a year’s supply of canned goods, filtered water, guns and ammo. Preppers. These people are convinced the apocalypse is coming and they will be prepared. They’re an inversion of the people in Survivor, since they already know they will be among the sole survivors. Instead of surprise and awe, they speak with righteous certitude.
Survival as game, survival as entertainment, survival as life-preserving hobby. None of these captures the ambiguity, and confusion, that for me cannot be separated from the phrase “I’m a cancer survivor,” even though, apparently, I am. Cancer creates difficult circumlocutions. I had cancer, which makes me a “former” cancer patient, but I’m taking Tamoxifen and “it”—the cancer—could “come back,” which leaves me unsure where I fall on the survivor scale. Instead of calling myself a cancer survivor, I say, “I’m OK now,” with a smile and a nod of my head. I’m like a magician. “Nothing to see here,” I say as I pull up my sleeves, careful not to show my surgical scar. I smile, to soothe other people’s discomfort. I don’t want anyone to feel sorry for me because if they seem worried on my behalf, I start to worry, too. “Had” and “have,” “recurrence” and “cure,” “life” and “death,” start to feel slippery, like consequences separated from time. “I had cancer” feels nothing like “I have cancer.”
I would never contradict someone who calls herself a cancer survivor; I just don’t feel the label applies to me. Or maybe it doesn’t apply to me yet. I can’t quit the yearly mammograms, regular follow-up appointments, and daily Tamoxifen. I mean, I could, but I won’t, so I also can’t quit the worry, which sidles into my mind at strange times. The worst is when ads for drugs to treat metastatic breast cancer randomly pop up on the internet. I tell myself they’re not targeted to me, but they might be, some day.
Statistics tell us that one in eight American women will be diagnosed with breast cancer over the course of a lifetime. A TV show called Cancer Survivor would start with eight women, and seven of them would leave the island. The one remaining would have felt a lump, been called back for a follow-up mammogram, had the biopsy that came back positive for malignancy. She would have surgery, get chemotherapy (maybe), and radiation if her surgery was a lumpectomy and not a mastectomy. No one wants to be the “sole survivor” on that island.
If it feels like I’m still surviving, can I call myself a survivor? That’s the crux of the matter, the paradox. I’m still surviving. Present tense. I’m a cancer patient and will be for ten years, because I take Tamoxifen for five years, and then I’ll take a different drug, called an aromatase inhibitor, for another five years. Aromatase is an enzyme central to the production of estrogen and aromatase inhibitors work well to prevent breast cancer recurrences in postmenopausal women. Maybe after those ten years, if I’m cancer-free, maybe then I will call myself a “survivor.” I’m supposed to be cured, I think, since that’s what makes me a “survivor.” Except no one says “cured.” They don’t even talk about it: treatment gets outlined, its specific steps explained, but no one talks about an absolute end-point to having the disease.
Cancer patients are generally denied the decisiveness of “cure.” Instead, we have more technical labels with more-or-less precise meanings:
Disease-free survival (DFS)
Relapse-free survival (RFS)
I know this because I never said “cure” to my patients on the bone-marrow transplant floor and I embraced the ethical correctness of withholding that powerful word. It was not possible to say that a leukemia patient was cured when he left the hospital, free of disease, after two months of treatment. Having no disease was good, but cured? One hundred percent cured? As in, like measles or mumps, that person could never get cancer again? No. Doesn’t happen. No guarantees, no promises. That is why, sometimes, I suddenly feel the fear. That is also why, sometimes, I imagine that I never had breast cancer. Did I really have breast cancer? Did I? Really? I can’t always face it. It seems so unlikely, and yet, I did.
Theresa Brown, AB’87, PhD’94, RN, is a nurse and writer who lives in Pittsburgh.