Some cancer patients adopt a “don’t ask, don’t tell” policy with their doctors. Either they are more afraid or more brave than I am. I keep on asking, though the telling sometimes jolts me.
“How long do you think these pills will work?” I ask about the experimental drug trial in which I participate.
“About six months,” my oncologist says.
“What do we do then?” I am trying not to look upset.
“There are chemo options,” she explains.
“For how long?” I persist.
“For as long as they work,” she smiles.
Dr. Matei would probably not volunteer such disturbing information, but she responds to my inquiries with an honesty on which I depend. Still, the conversation resembles a catechism. I have posed these queries before, heard the responses before, and been shocked by them before. She bears with me.
I persist in this formulaic asking and telling because my sense of myself has turned out to be less valid than my oncologist’s assessment of me. While I was feeling perfectly fine during remissions (or as fine as I could feel after numerous surgeries and chemotherapies), she informed me three times – on the basis of blood tests and scans – that a recurrence had begun. Plunged into a cloud of unknowing, my mind must have swerved from the realities that rule my body. Then I twist in the trap of cognitive dissonance: I think that my body is healthy, but the disease has returned. I am not the person I believe myself to be.
The perplexity of this situation is captured by a word coined by Stephen Colbert: truthiness. Truthiness is a perception that a person feels to be true or claims to know intuitively without any regard to facts or objective investigation. A perception that a person feels to be true: I not only look OK, I feel fine. Yet the rising blood marker and the scan prove me to be ill. These antithetical perspectives split me in two. The disjunction between lived experience, on the one hand, and scientific evidence, on the other, cleaves my spirit. It distresses me that my oncologist resides with truth, I with truthiness.
Like remission, maintenance is a period of time saturated with truthiness — especially for patients who remain asymptomatic. And truthiness casts a pall. I have one friend with stomach cancer who takes daily pills and another with lung cancer who goes every three weeks for infusions. While the cancer neither recedes nor advances, their lives are nearly normal: some flulike symptoms or rashes, but surely they should be able to get on with everyday matters. (Do you sense the pervasive guilt induced by the conviction that surely one ought to be able to lead a near normal life under such circumstances?) What looms over both of them and strikes fear in their hearts are the periodic scans after which they will be informed about what they themselves cannot determine.
Our bodies, ourselves? I don’t think so. I hate saying “my cancer.” How can it be “mine” if I don’t know what it is doing, and it is out to kill me?
The disjunction between feeling all right and not knowing what verdict will come down causes all sorts of disruptions in the lives of the women in my support group. Judy finds herself fragmented by anxiety: whether she is watching a movie or dining out, part of her mind wanders off, worrying about a recurrence. Diane engages in “serious culling”: she keeps on going through her closets, bagging the stuff she hasn’t worn, and hauling it to Good Will so “the kids won’t find a mess afterwards.” Alison, no longer trusting her body, finds her world narrowing as the house becomes “her nest.” Like Sarah, I fear the interminable lining up for security surveillance and the coughing crowds at airports. But now at take-off, when (as always) I picture the plane crashing in flames, I joke to myself, “Not a bad way to go!”
“What happens when all treatments stop working?” a friend inquires, as I consider which friends ask and which friends don’t want to be told. I suspect that Dr. Matei is better equipped to answer her question than I am. Yet I realize that on this topic I have adopted a “don’t ask, don’t tell” policy. Nor have I asked if we can somehow manage to avoid a fate that haunts me, the ultimate degradation of ascites: fluids accumulating in the abdominal cavity. It turned a dying friend of mine into a swollen inflation of her previous self. Why should I care what I look like at the end? I shouldn’t, but I do.
Perhaps with certain (albeit different) subjects, we all end up not asking. Probably about certain (albeit different) worries, our oncologists simply cannot tell. Why not skip lurid coming attractions that cannot possibly be fathomed? With respect to cancer, maybe we all have to endure in the conditional tense of truthiness.
Susan Gubar is a distinguished emerita professor of English at Indiana University and the author of “Memoir of a Debulked Woman,” which explores her experience with ovarian cancer.