With the Relay for Life season upon us, I am less interested in celebrating my own survival from cancer and more interested in abolishing carcinogens so that my own two children will never have to run the survivors' lap of honor.
As we pour our millions into research and invest all our hopes in vast programs to find cures for established cases of cancer, we are neglecting the golden opportunity to prevent, even while we seek to cure. - Rachel Carson, Silent Spring
This is a story with a happy ending.
One summer evening, my young children and I returned home from the woods of upstate New York. They had been campers. I had been a camp counselor. As advised by the camp director, I stripped each child, looked closely for ticks, and then shepherded their sticky bodies into the tub. As they bathed, I undressed in front of the bathroom mirror, inspecting my own skin for the dark sesame seeds that are deer ticks.
A field biologist by training, I'm familiar with nightly tick checks.
My eyes saw it in the mirror before my fingers found it. At the lower edge of my right breast. Not a tick. A lump. Hard as a frozen pea and about the same size.
I remember a sensation like the bones of my legs turning to glue. I remember yelling into the mirror, No! No! You are not a tick! I remember my children asking from the other side of the shower curtain, What happened? What happened? I remember walking slowly out of the bathroom, calling my husband's name in a brittle, cheery voice - as though imitating the computer that answers telephone queries for credit card companies.
The soles of my feet were wet. I remember slipping on the top stair. The falling came as a kind of relief.
My husband found me sprawled near the bottom stair. What happened? What happened?
I remember saying, I have a breast lump. I remember watching him trying to attach those particular words to the situation: wife, naked, lying on living room floor.
Phone calls. Medical appointments. More phone calls. More medical appointments.
I remember the photograph hanging on the wall of the ultrasound room: caught between two enormous tree roots, a white flower blooms within an eyebrow of earth. I couldn't recall the species name. I remember the photograph gracing the pathologist's desk: his son, who is a friend of my son. I couldn't recall his name either.
The biopsy was negative. I didn't have breast cancer. And my bruises from the stair treads soon faded away.
Here are bits of other stories with happy endings: The MRI showed the vertigo wasn't brain cancer. The endoscope showed the chest pain wasn't esophageal cancer. My excised mole was not melanoma. The bone scan was normal. The ovaries unremarkable. The colon polyps benign.
But prior to all these stories lies a narrative with a different sort of outcome. The blood in my urine did once signify a mass. And that mass was, in fact, a tumor. And thus, at the age of twenty, I was diagnosed with stage II bladder cancer.
Because of this diagnosis (which has a reputation for recurrence), because I am adopted (and so lack a family medical history), and because of the colon polyps (of a type that suggests a possible inborn vulnerability to several kinds of cancers), I will be under intense medical surveillance for the rest of my life. Aside from my headlong pitch down the stairwell, I've mostly made my peace with this. I know how to wait for pathology reports. I know which questions I can and cannot expect a radiology technician to answer for me. I know how to undergo colonoscopies as a breastfeeding mother (skip the sedation and keeping breathing). I know how to feel grateful. I am a longtime cancer survivor, which is itself a kind of a happy ending. Longevity is the plot line that all cancer patients fervently hope for.
As my friend Nancy Nichols points out in Lake Effect: Two Sisters and a Town's Toxic Legacy, her memoir of her own journey through pancreatic cancer, "Survivorship has its own rewards: Christmas, ski trips, the chance to see your kid in the play, to write another story, to watch TV as your husband falls asleep in his chair."
But in this book, Nichols makes another point, too. Cancer, she observes, was once a disease of whispers and shame. Now it's a badge of honor. The story of cancer now features a warrior-like protagonist who undergoes a rite of passage that bestows strength, wisdom, and even sexiness. This cultural metamorphosis has turned survivors into rock stars. (The American Cancer Society Relay for Life: Celebrate. Remember. Fight Back.) "The superstar cancer-patient image is simply a new kind of invisibility," Nichols writes. "It denies, or at least downplays, the suffering that comes with the disease and in doing so makes it easier to avoid thinking too hard about the causes."
Having lived through all of the past thirty years as a cancer survivor, I wouldn't want to return to the days of silence and stigmatization. And neither does Nichols. But what I do want is a redirection of cancer advocacy efforts toward prevention. And banking on cures, racing for cures, and turning everyone with a tumor into a conquering hero is the wrong narrative for that effort. Yes, I've been successfully treated. Yes, early detection may have saved my life more than once. Yes, I've undergone sixty-nine cystoscopies; seven colonoscopies; surgical menopause; and innumerable bloods tests, ultrasounds, bone scans, and biopsies. But I'm less interested in running a survivors' lap of honor at a Relay for Life event than I am in honoring life by reducing exposures to cancer-causing agents.
During the past thirty years - while I was spending considerable time interacting with the health care system and fighting with insurance companies for the privilege - the overall incidence of bladder cancer has increased by ten percent, a new pesticide with links to bladder cancer has come on the market, and the Toxics Release Inventory has reported the continued release of known and suspected bladder carcinogens. For at least one bladder carcinogen (o-toluidine), environmental releases increased between 1992 and 2007.
So the American Cancer Society can keep their relay. I'm tired of running in circles. What I want is a world without carcinogens in it. What I want is for my children to remain forever unfamiliar with the photographs hanging in the radiology department and with the musical passages (always Vivaldi) that play through the phone lines when you are placed on hold while waiting to find out the results from the pathology lab.
What I want is an end to the story of cancer, not just a happy ending.
Sandra Steingraber is the author of Living Downstream, newly published in second edition by Merloyd Lawrence Books/Da Capo Press to coincide with the release of the documentary film adaptation. This essay is one in a weekly series by Sandra, exploring how the environment is within us. www.steingraber.com / www.livingdownstream.com
Follow Sandra Steingraber on Twitter: www.twitter.com/ssteingraber1