Point of View
Not a gift
By Susan B. Apel
Five years ago, on January 17, 2003, I was diagnosed with breast cancer for the second time. It was my 50th birthday. The first cancer had been found early and was, in retrospect, minor. This time the mass was large—four centimeters—and the cancer had spread to my lymph nodes.
My husband and I went out to celebrate my birthday immediately after getting the diagnosis; we had, after all, made reservations. Somehow, we managed to eat dinner. In the days that followed there were more doctors' appointments; the bad news intensified. Mastectomy was my only option, and given my history I decided to make it bilateral. I also had to decide whether to have breast reconstruction, when, and what kind. The oncologist said chemotherapy and radiation were in my immediate future. I couldn't think about anything. I was frozen with fear that, at the age of 50, newly married and madly in love, I was going to die.
I'd recently lost my father to heart disease and several friends to cancer. My own death was even more terrifying. That I might leave my husband a widower, predecease my mother, suddenly be absent from the life I had so painstakingly created—I couldn't bear such thoughts. Not for me the death-is-a-part-of-life philosophy. I had hoped that sometime in the next four decades I'd come to peace with the notion of my own death. But not now, not in my fifties.
Nausea: A year vanished from my life, a year filled with surgery, chemo, radiation, pain, nausea, more pain, and endless physical therapy. Also the kindness of friends, the compassion of strangers. The love and support of a husband who, on his recent wedding day, could not have imagined this. Weird tastes in my mouth, stiff joints that made me feel as if I'd aged another several decades. Bald head. Sleep, constant sleep—in bed, on the couch, in the car. Then my hair returned, as did excess weight. My reconstructed breasts rounded out from their original squarish shape. I became inordinately fond of my eyes, for they reminded me that not everything had changed.
Hungry for the stories of other survivors, I have found myself drawn to their perspectives in person, in print, on television. I share many of the feelings that others express. The initial fear, the plodding nature of decision-making in the face of uncertainty, the gratitude to be alive. And then, inevitably, I hear someone say, "This cancer was a gift." I try it out. I try saying "My cancer was a gift." I can't. It feels horrible. That something so terrifying, so life-altering, so full of suffering should be labeled thus makes me want to scream or, in lighter moments, to wonder what sorts of gifts these people have been in the habit of receiving. Sometimes I can hardly stop myself from shouting, "Oh, so would you wish it on your loved ones?"
I have learned much from my experience with cancer. First and foremost, I have learned that despite some commonalities, each patient experiences the disease uniquely. So I don't doubt that, for some, cancer may indeed be a gift. I respect that. But for me it was not.
Yes, even in the face of terror there are threads of joy and hope and laughter. The horrendous ride is made less so when one actively acknowledges those threads. And it is immeasurably surprising how, when one looks purposefully, one can find a host of positive experiences buried in the mess. I have a boxful of cards and letters and emails from friends and family, as well as from mere acquaintances. Many people prayed for me, my own agnosticism notwithstanding. My students, my employer, and my colleagues sent their best wishes. I was buoyed by this web of friendship and compassion and hope. My husband turned out to be the most supportive and loving partner I could have wished for.
Matters: I also learned how little physical appearance matters, as no one loved me less when I was bald and bloated. Remarkably, baldness actually began to seem beautiful, even to me. To the extent that I had developed an attachment to my hair—formerly dark and thick—it (the attraction as well as the hair) was now gone. And cancer caused me to look at my life, to ask if the one I was living really suited me. My answer was a resounding yes, which made me feel proud of having fashioned an existence so meaningful and joyful.
But a gift? Not even close. I have not been, and do not intend to be, a good girl about cancer. I accept but don't forgive its ravages. The scars, the unresponsive reconstructed breasts, the back pain, the diminished sexual capacity. The drugs, doctors' visits, and physical therapy. The fear. Fear of treatment and its side effects was predictable. But five years later, fear has taken up permanent residence in my psyche. Friends sometimes ask, "Are you afraid?" At the time they ask, I can usually answer "No." I am not constantly gripped by fear, but it lurks, sometimes encircling me and squeezing out my breath, sometimes merely brushing me with its hand. The fear of a recurrence, or death, is easily understood. But my fear has mutated, grown, transmogrified. I now fear my husband has been in an accident when he's late. I worry it's my plane the terrorist will choose. I fear not only cancer but losses of all kinds. Anxiety has become a part-time job.
Odds: That's because the "gift" cancer has given me is the sure knowledge, backed up by the data ofmy own experience, that, yes, the worst can occur. The odds—often in one's favor—aren't always. What you worry about . . . well, sometimes it happens. I had thought that my job as a cancer survivor would be to dutifully attend all follow-up appointments and to eat well. What I was not prepared for was the challenge of stemming the anxiety that still floods my nights.
The Point of View essay provides a personal perspective on some issue in medicine or science. Apel is a professor at Vermont Law School (VLS) and an adjunct professor at Dartmouth Medical School (DMS). She coteaches a class on medicolegal issues, including reproduction and parentage, that is open to both VLS and DMS students.
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