Between illness and cure | The University of Chicago Magazine
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 on the Other Side.”
Stay Alive was a popular board game I played as a kid, a much simpler game than Immortals, the one kids bought for Christmas the year I was diagnosed. In the game’s old TV commercial, four children on a beach see it washing ashore with the tide and decide to play. The game board is a square plastic platform that consists of ordered rows with holes. Criss-crossing strips of flat plastic under the game board have irregularly spaced holes and tabs at both ends that protrude from all four sides of the board. These tabs move the plastic strips back and forth as players push and pull them, opening and closing the holes. To start, players place their colored marbles randomly on the board, and each turn pull or push one of the levers, hoping to sink other players’ marbles and leave their own. The player who only has his own marbles left on the game board wins. In the advertisement, a child, wearing a bucket hat, is the one with a marble still on it. He said, his voice inflected with surprise and admiration, “I am the only survivor.”
Now we have Survivor, the TV series franchise that pits fit strangers against each other on a beautiful island thought to be deserted. One by one, or so I hear, the candidates are elected off the island. I’ve never seen the show, but I wonder if at the end the only person left says, in a voice tinged with surprise and admiration, “I’m the only survivor.”
We also have survivors, people with bunkers in their backyards or basements filled with a year’s supply of canned food, filtered water, weapons and ammunition. Preparers. These people are convinced that the apocalypse is coming and they will be prepared. They are an inversion of people in Survivor, because they already know that they will be among the only survivors. Instead of surprise and fear, they speak with just certainty.
Survival as a game, survival as entertainment, survival as a vital pastime. None of these capture the ambiguity and confusion that, to me, cannot be separated from the phrase “I am 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 – might ‘come back’, which leaves me unsure where I stand on the survivorship scale. Instead of calling myself a cancer survivor, I say, “I’m fine now,” with a smile and a nod. I am like a magician. “Nothing to see here,” I say, rolling up my sleeves, careful not to show my surgical scar. I smile, to soothe the discomfort of others. I don’t want anyone to feel sorry for me because if they seem worried about me, I start worrying too. ‘Had’ and ‘have’, ‘recurrence’ and ‘healing’, ‘life’ and ‘death’ begin to feel slippery, like separate consequences of time. “I had cancer” has nothing to do with “I have cancer”.
I would never contradict someone who calls themselves a cancer survivor; I don’t think the label applies to me. Or maybe it doesn’t apply to me yet. I can’t stop yearly mammograms, regular follow-up appointments, and daily tamoxifen. I mean, I could, but I won’t, so I can’t stop the worry either, which creeps into my mind at weird times. The worst part is when advertisements for drugs to treat metastatic breast cancer appear randomly on the Internet. I tell myself that they are not targeted at me, but maybe they will be one day.
Statistics tell us that one in eight American women will be diagnosed with breast cancer in her lifetime. A TV show called cancer survivor would start with eight women, and seven of them would leave the island. The one who remained would have felt a lump, would have been called back for a follow-up mammogram, if the biopsy had come back positive for a malignancy. She would undergo surgery, receive chemotherapy (maybe) and radiation if her operation was a lumpectomy and not a mastectomy. No one wants to be the “lone survivor” on this island.
If I feel like I’m surviving, can I call myself a survivor? This is the crux of the problem, the paradox. I still survive. Here. I’m a cancer patient and will be for ten years because I’m on tamoxifen for five years and then I’ll be on another drug called an aromatase inhibitor for another five years. Aromatase is an enzyme essential for the production of estrogen, and aromatase inhibitors work well in preventing recurrences of breast cancer in postmenopausal women. Maybe after these ten years, if I’m cancer free, maybe I’ll call myself a “survivor”. I’m supposed to be cured, I think, since that’s what makes me a “survivor”. Except that no one says “cured”. They don’t even talk about it: the treatment is described, its specific steps explained, but no one talks about an absolute end point to 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 embraced the ethical correctness of retaining this powerful word. It was not possible to say that a patient with leukemia was cured when he left the hospital, unscathed, after two months of treatment. Having no disease was good, but cured? One hundred percent cured? Like in, like measles or mumps, this person could never get cancer again? No. It doesn’t happen. No guarantees, no promises. That’s why sometimes I suddenly feel fear. It’s also why sometimes I imagine that I never had breast cancer. Did I really have breast cancer? Have I got? Really? I can’t always deal with it. It seems so unlikely, and yet, I did it.
Theresa Brown, AB’87, PhD’94, RN, is a nurse and writer who lives in Pittsburgh.