by Lizzie Stark
The times when she received lower doses of radiation for scans that would check for residual cancer cells were stranger still. She’d be sent home to us, where she’d make our food with plastic gloves on, sleep in the guest bed, and use the downstairs bathroom so as not to irradiate us. Close physical comfort—hugs and kisses—were forbidden for a week or two, until the radiation wore off.
After the ham Christmas, while she lived in that garbage-bag-lined corner room for the first time, my mother sent me flowers. They came in a pot shaped like a chocolate ice cream cone, with a metal spoon bearing a matching ceramic ice cream cone handle sticking out of the arrangement. As a twerpy six-year-old, I had felt left out because her illnesses made my mother the center of attention, though she never courted that, and I saw her getting streams of flowers and other presents. I’d made a jealous comment about it, and she sent me flowers from her hospital bed.
Five years later, she gave the eleven-year-old me another gift, a troll doll, before her hysterectomy and oophorectomy. Though it was a routine surgery, given her history of hospitalizations my fear for her existed in outsize proportion to the actual risk. After the doctors found a benign ovarian cyst, she had decided to get it over with rather than wait around for the ovarian cancer that had killed her aunt and almost killed her mother. Ovarian cancer is one of the most lethal cancers out there—killing more than half the women diagnosed with it—possibly because it is so difficult to detect.
What I remember most about my mother’s thyroid cancer, though, is not the ham or the radiation visits or even the flowers. It is making Chinese duck stew with my father—visiting the fancy grocery store to pick out the nicest vegetables, skimming the pot, even wrapping shrimp dumplings—my favorite!—in little wonton pouches to simmer in it. It’s curious, as if my mind is trying to protect me from my own memories. I try to recall the cancer, but all I can see is the food.
Her illness and frequent hospital visits had their silent repercussions on me. On some innate level I understood that she could be taken from me at any time; I understood Death as our constant silent companion, someone who could interpolate himself between us and our loved ones on a whim. Like all kids, I could be a jerk sometimes, and of course my mother made me mad, but I couldn’t express this anger toward someone who might die. What if those were the last words I’d say to her? Saying “I love you” before any trip—even one to the store—was the norm in our household.
Although her illnesses frightened me, my parents gave me a happy childhood. Outside of the fear that she would die and seven years of psychotherapy, there were ballet practice or gymnastics practice or swimming practice, recreational choruses, Rollerblading with my friends, trumpet lessons, Nancy Drew novels to read, classic novels to be read to me, intriguing clubhouses to form with neighborhood kids down in the wood, wild raspberries to gather in the summertime, hills to sled in winter, Girl Scout camping trips, church picnics, origami animals to fold into existence, and string figures to tangle my fingers in between trying to coax our ancient computer into loading modern adventure games. And of course, a whole string of cooking lessons in desserts and fast meals from my mother, and in breakfast and epic banquets from my father, who seemed to go through culinary phases. We boiled two dozen eggs for different intervals of time to discover the perfect soft-boiled recipe; we ate nothing but sautéed chicken for eight weekends straight until we’d perfected it; we poached fish to exhaustion, scoured supermarkets for contraband spices, carved turnips into football shapes, and flipped crepes.
But my mother’s illness had already lodged beneath my skin, and I grappled with big questions of mortality and life planning. Around age ten, a few years after the ham Christmas, I decided I’d rather not die. But since that seemed a biological impossibility, I decided I wanted to die while doing the things I loved. So, in other words, doing cartwheels in a pool while singing after a taco dinner. By the time I turned twelve, I’d had years to consider what not-dying would look like, and I’d decided it meant having a legacy that lived on through the arts, preferably screen acting or virtuoso trumpet performance. The arts are a foolish career choice, but then, if you are going to die of cancer at thirty, you don’t have much time to suffer in poverty and obscurity—the world is ending soon anyway, so what the hell? In junior high, I mapped out the rest of my life. If I was only guaranteed existence until the age when my mother first got cancer—and if that was not a certainty, it felt at least a firm possibility given my family history—then I had to meet the man I would marry by age twenty-four at the latest, so we could date for a year or two and still have time to pop out some babies before I croaked. I was determined that disease and illness would not deprive me of anything I felt entitled to—love, a family, a career. Passing on without a legacy would mean letting the cancer win.
After I graduated from high school, my mother and I spent a month road-tripping across the American Southwest, clocking some quality mother-daughter hours together before college separated us semipermanently. Somewhere near the Grand Canyon, while we waited for a shuttle or bus or possibly for my father—who joined us late in the trip—to fetch the car, we talked about cancer. It hadn’t been a forbidden topic or anything—I remembered my mother’s cancer, obviously, and when I was a little nibbler Aunt Cris decided not to have children, so she passed along a silver daisy ring to me, the ring my great-aunt Trudy wore until she died of breast cancer at age thirty-one. It’s one of the few family heirlooms I possess, and I wear it always. Since cancer has tortured my family across several generations and there is so much accumulated pain, my mother and I seem to talk about it in uncontrolled spurts. The topic comes up, like a tulip bulb peeking out of the soil, and we make temporary space for the whole conversation. That night was one of those times. Sitting on the park bench at dusk, smelling the dry piney air and looking at the smooth beige stones composing the pavement, we talked. Though it was not the first time I had gotten this information, for the first time, I began to really understand. Things were far worse than I imagined. It was not just my mother, but my grandmother, and her sisters, and their children. Every female relative on my mom’s side of the family had lost her breasts to cancer or the fear of cancer or both. It dawned on me that the story wasn’t over. I was also a female relative—the oldest of my generation in the extended family. We left the conclusion unspoken. Neither of us was prepared to face it just yet, and since I was only seventeen, the decision was probably years off.
By the time I reached my late teens, a graph had imprinted itself in the back of my mind, an image of what life is like, age plotted against awesomeness, which resided on the y-axis. The graph described a rising curve that peaked around age twenty-one before dropping off sharply. At thirty, or a little later, the chart ended. At the moment of our talk, living near the apex of the curve, I could see the downslope coming already. I had spent some time considering what I’d most regret if I died tomorrow. At that age, I felt a vast gulf of hipness separated me from my parents, and I suspected that since they were kind, responsible, reasonable people, they had never truly lived. I didn’t want to be like them. I wanted more recklessness in my life. If I died tomorrow, I’d regret never having stayed up till dawn dancing, never trying steak tartare or sucking down a few slugs of authentic absinthe. I’d regret saying no to offers to try sea slug, visit Oslo, go on an archaeological dig. I’d regret never having known the sensation of a shaved head or a tattoo needle. I’d regret letting fear of failure hold me back from blundering into places where I didn’t belong, putting on performances, writing bad stories. Most of all, I’d regret not having done everything within reason to pursue my dreams.
This feeling that life is guaranteed only until the date of your mother’s first cancer diagnosis has infected other relatives as well. My great-aunt El—one of my grandmother’s older sisters—had breast cancer in her thirties when her four kids were young. Though they are more than twenty years older than me, I share this experience of a life mapped out with Kathy and Lis
a, El’s two daughters, my mother’s cousins. When El was diagnosed with her first cancer, Kathy was about seven, and Lisa was an infant. I was six for my mother’s thyroid cancer diagnosis and an infant for her breast cancer diagnosis. We feel developmentally akin. When I talk to Lisa, she admits that cancer “always seemed inevitably that it was to be my fate. It happened to my mom. It was so much a part of our lives. I always thought that some day I’ll get breast cancer.” Kathy decided that she needed her PhD by age twenty-four so she could work for six years before succumbing to a planned bout of cancer. As she puts it, after watching her mother sicken as a child and again as an adult:
I never developed that illusion that you’re guaranteed a long life. There are people who walk around who have this lightness of being that of course they’re going to be old and they’ll make jokes about it. There are people who never had that in them and I never had that…. I remember sitting in California on a dock with my husband (the right one). We’d been married two years, and I didn’t realize it but I was actually pregnant at the time, and he said, ‘OK, we’re going to do something you’ve never done; we’re going to talk about the future.’ And he said we’ll make plans about the future, and he said that you have to think that we’re going to live to be old. Because I never talked about the future—I didn’t expect it. I think that’s part of why I raced through academics, because all you were guaranteed was the day you have…. I never saw my mother old. I didn’t know what I’d look like as an old woman. I have girlfriends who talk about plastic surgery and I’m so not there. I’d love to have wrinkles on my face.
This sense of life as a precious, fleeting commodity perhaps explains my mother’s constant activity. “I think I tried very hard to live as though I wouldn’t let the diagnosis of cancer interrupt my life—probably my survival strategy, but it also kept me in some ways from asking for help very often,” she wrote to me. She packed up her wig and prosthesis and we went on our planned family camping vacation with my father’s sister and her family. Although my mother never returned to work after the breast cancer, she filled her hours with volunteer activities. They’ve changed over the years, but here’s a sampling of a month for my mother: Every week she volunteers at a local arboretum where she gardens, and in a reading-intensive first-grade classroom at a public school; she also gardens for her church, where she taught Sunday school for twenty-five years. Then there are the book club and the museum Wednesday club she organizes once a month and the quarterly trip to the homeless shelter to make dinner. She walks four miles every day with a friend from down the block, gardens her own garden, lifts weights, and then there are the needlepoint and sewing projects. She can’t even sit still to watch TV.
In my early twenties, I stopped worrying so much about my mother, and slowly, inexorably, my fears for her transferred over to me. At eighteen I met the man I would eventually marry, but we didn’t start seeing each other for several years. I traveled places. I learned what it meant to be drunk at a dance club. A woman in a park in Barcelona, where I went exploring with friends, handed me a sprig of rosemary, touched my palm, and predicted that I would have lots of health problems. Though I don’t believe in fortune-telling, in the years to come the scene replayed in my mind. I clung to my friends too tightly and messed up many relationships with my clutching. Eventually, my future husband and I settled in Boston, in a 1950s-style apartment over an old dance hall with original linoleum and not enough insulation, and I began grad school. And one night, while looking at the vulnerable pale-blue veins under my breasts in the mirror—a favorite pastime when I felt twee after dark—I decided to do a breast self-exam. I discovered a weird thickening on the underside of my left breast. George, my boyfriend, could feel it too. Intellectually, statistically, I knew it was probably nothing, but I booked an appointment, and yep, the gynecologist found a lump. She sent me for a mammogram and an ultrasound. I was more scared than I was willing to admit, and at the doctor’s office I kept waiting for someone to tell me “You’re fine,” or “It looks all right.” As it turns out, the technicians are not permitted to offer these assurances for fear they might raise hopes that later turn out false.
The thing in my breast was nothing. I was twenty-three and still felt invulnerable. But my doctor was concerned. Some experts recommended starting mammograms ten years before the diagnosis date of your closest relative with cancer, she said. For me, that would have been age twenty-one. I was already behind.
A year later, my mother brought up genetic counseling during a phone call. I should consider it, she said. I scored a referral to a breast center in Boston, appalled to discover that it shared space with the oncology department, a place I had spent my whole life trying to avoid.
For the last decade my grandmother had devoted herself to finding out what was in the family. She enrolled herself in a genetic study at Creighton University and wrote to German relatives she’d never met or hadn’t seen in four decades to assemble a larger pedigree. She had tested positive for a cancer-causing genetic mutation as part of the study, she said, and we mostly believed her; but she was also in decline both mentally and physically, and my mother didn’t want to worry her by bringing up the topic again since she’d had enough cancer in her lifetime—three bouts of her own and eight bouts in close family. So it made sense to test my mother first because she had already had premenopausal estrogen-receptor negative breast cancer, that is, cancer that struck before menopause and that did not contain receptors that made it grow in the presence of estrogen. Both the premenopausal and estrogen-negative elements are risk factors for a BRCA mutation. Once the technicians at Myriad Genetics had sequenced her DNA for a several-thousand-dollar fee covered by insurance, all they would have to do would be look at the spot in my DNA where my mother’s mutation, if any, occurred—a cheaper procedure. If my mother tested negative, I would be off the hook unless we had some alteration science had not yet discovered. If she tested positive, then there would be a fifty-fifty chance I also carried the genetic mutation and was at grossly elevated risk for developing breast and ovarian cancer at an unusually young age.
At twenty-five, I no longer felt invulnerable. I’d recently had my first serious interaction with the medical system: a retinal detachment in each eye, spaced a year apart. The retina is the membrane that coats the inside of your eyeball and contains the rod and cone cells that detect light and color, and permit vision. Since I am nearsighted, my eyeball is elongated, which can put extra stress on the retinal lining. Sometimes, a hole develops, and the vitreous humor that fills the eye seeps behind, peeling the whole thing off like wet wallpaper. When that happened to me, I saw warped lines of text, and cigarette burns, the kind that join strips of film together for theatrical showings, black flashing bubbles in the lower inner quadrant of my vision. It’s unusual in such a young person, the ophthalmologists told me, but sometimes these things do happen. A retinal detachment is an emergency. If left untreated, you go blind. But since going blind is not life threatening, the procedure to fix it is considered “elective.” So one morning I was at the eye doctor thinking I had an infection that some drops would fix, and by the evening I was at the hospital, where surgeons sewed a silicone band to my eyeball while I was sedated but still awake. It wasn’t pleasant, but it was better than being blind, I kept telling myself. Afterward, I felt fragile, the unlucky winner of some shitty lottery. Maybe this is what I get instead of the gene, though, I thought. Maybe I had lucked out.
It felt like an eternity—or a few hams—away when I was fifteen and planning the rest of my life, but now, at twenty-six, I began to realize that thirty was not that old. I stopped remembering how tough my mother’s sickness felt for me, and I started envisioning what it was like for her. Some of my friends had begun to have children. I imagined them stricken, trying to juggle chemotherapy and careers, trying to lift their babies with arms weakened from surgery. I imagined my beautiful friends, for whom fashion could be both a pleasure and a chore, I imagined their shiny hair falling
out, their eyebrows no longer waxable, their faces sunken or swollen from steroids, their turbans, their sense of grimly soldiering on despite the blows to their femininity, and slowly my image of them lost color to become the black and white of old photos, of the faceless horde of women who came before me. This wasn’t a fantasy, it was the reality lived by my mother, grandmother, great-aunts, and maybe, in the distant mirror of the future, me.
2 | “It’s Everywhere”
Fear of cancer is an old emotion, because the disease is ancient.
