Pandora's DNA

Tracing the Breast Cancer Genes Through History, Science, and One Family Tree

Lizzie Stark

• Publisher: Chicago Review Press
• Year: 2014
• ISBN:
  9781613748633
• Edition: 1
• Topic: Medicine
• Subtopic: Medicine Biographies

2015 ALA Notable Book Would you cut out your healthy breasts and ovaries if you thought it might save your life? That's not a theoretical question for journalist Lizzie Stark's relatives, who grapple with the horrific legacy of cancer built into the family DNA, a BRCA mutation that has robbed most of her female relatives of breasts, ovaries, peace of mind, or life itself. In Pandora's DNA, Stark uses her family's experience to frame a larger story about the so-called breast cancer genes, exploring the morass of legal quandaries, scientific developments, medical breakthroughs, and ethical concerns that surround the BRCA mutations, from the troubling history of prophylactic surgery and the storied origins of the boob job to the landmark lawsuit against Myriad Genetics, which held patents on the BRCA genes every human carries in their body until the Supreme Court overturned them in 2013. Although a genetic test for cancer risk may sound like the height of scientific development, the treatment remains crude and barbaric. Through her own experience, Stark shows what it's like to live in a brave new world where gazing into a crystal ball of genetics has many unintended consequences.

1 | The Ham Speaks for Itself

The only thing my father remembers about that Christmas is standing in front of the meat case in the supermarket and deciding to buy the whole ham. Ordinarily, the butcher splits a leg of ham in half—the more delicious butt end, from near the pig’s hip, and the shank end, each of which sells as an individual ham. At this supermarket, these hams filled the meat case, with a few full-length behemoths skirting the edges, as big as our congealed uncertainty and dread.

That Christmas, my mother received her second cancer diagnosis right before the holiday. As my father tells me years later, “It’s sort of like, well, the universe is going to explode, so if I never had a chance to buy a whole ham before … what the hell. It’s kind of in the same line as ‘We may as well go skydiving—what the hell.’ I don’t remember who else was there or what else we had or anything else.”

My uncle Mark doesn’t remember the holiday until I mention the food. “Two hams. Yeah, I do. Like forty pounds of ham in the refrigerator. This is one of the things [we talked about]—are we going to finish the hams? Or are they still there? Or how many hams does he think we can have? I just remember eating lots of ham. But again, I don’t remember a lot more beyond that. Your mom’s in the hospital; your dad has a lot of ham.”

My uncle Alan hardly recalls that Christmas either—it was dwarfed for him by what came after. But, he says, “I remember the hams.” And apparently my father “made a joke about eternity or infinity or something like that is a ham,” Alan tells me.

“Eternity is two people and a ham,” my father corrects, when I ask him. “On cookery,” he says, “I’ve always had a tendency to go grossly overboard, and this may not be the worst example of it, but it’s close to it.”

My mother swears it was two hams and a turkey.

Cancer has an incredible ability to warp memories as well as bodies, to intensify emotion to the point where it clouds reality. For me, my mother’s operations all blend together into one Technicolored nightmare. And although it is her bout with breast cancer that frightens me most, many of the scary memories of watching her sick and weakened derive from her thyroid cancer treatment, which took place during the ham Christmas. The two experiences—the fear of breast cancer and the pain of watching her suffer thyroid cancer—have become conflated. And while I remember the hospital visits, unlike the rest of my relatives I don’t remember the ham at all. I remember holidays where we had turkey, lobster, standing rib roast—once even a goose stuffed with prunes stuffed with foie gras—but as far as I can recall, we’ve never been a ham family. And since that Christmas, my mother has been unable to enjoy ham because the accumulated level of radiation she’s gotten to her neck has damaged her salivary glands and given her permanent dry mouth, making even orange juice too spicy for her to drink unless diluted, making salty meals like ham or my father’s eight-course Chinese banquets a thing of the past. Even with the gross synthetic spit in a tube she sometimes uses to relieve her symptoms.

The August before the ham Christmas, the three of us had gone backpacking together in New Hampshire. I was six and carried only my stuffed basset hound, Ralph, in my little knapsack, while my parents squired up sleeping bags, clothes, lunch, and the rest of the necessities. While we were there, my mother developed a rash on her face that didn’t recede even after we returned home. As with the proverbial old lady who swallowed the fly, things kept escalating. She visited a dermatologist to treat the rash; he noticed a lump in her neck and suggested she get it checked. Her general practitioner discovered the lump was in her thyroid and suggested an endocrinologist. The endocrinologist tried to aspirate the lump and suggested she see a surgeon. When the surgeon called my mom into a room to deliver the results with yet another doctor, she knew it wasn’t good. This lump could be something, they told her, and they’d have to operate to remove her thyroid. While they’d try to stay away from her vocal chords, there was a chance those might be damaged, or even cut, during the surgery.

By that time, it was December. My mother scrambled to get ready for Christmas, when our family planned to entertain her sister Cris and brother-in-law Alan; her brother Mark; her parents, Meg and Roy; and a family of four from down the block. In case her voice went, she recorded a tape of herself reading my favorite books, saying our prayers, and singing my bedtime songs. I listened to it every night. When she arrived home from the hospital on December 22, Aunt Cris and Uncle Alan had already shown up for the holiday festivities. And by then we knew that the lump in her neck was thyroid cancer, her second cancer diagnosis in five years.

For cancer survivors, making it to the five-year mark is a big deal because scientists measure cancer survival in half-decade increments. For example, let’s say you are diagnosed with breast cancer. The cancer is assigned a stage, ranging from I to IV, in increasing degrees of severity. Stage I cancer is small and confined to its area of origin, while stage IV cancer has hitched a ride to other places in the body and set up shop. More than 90 percent of patients diagnosed with stage I or II breast cancer are alive five years later, while less than 30 percent of late-stage patients are. In addition, there are different types of cancer. Some are ninjas—nimble, lethal, and hard to kill—while others blunder around like drunken frat boys—clumsy and slow moving, but still capable of pushing you down a flight of stairs if you don’t watch it. In 1982, my mother had been diagnosed with stage II ninja-like breast cancer. Although she was only thirty she had half expected it, given her family history of cancer. But after five years of remission, that the new diagnosis was thyroid cancer, and not a metastasis of the breast cancer, came as a shock. The breast cancer had been the fruiting of a genetic defect passed down in our family for generations, though we didn’t know it yet—just like the stage III ovarian cancer my grandmother had recently survived. But the thyroid cancer was a sporadic cancer. After all, one in two American men and one in three American women will develop cancer during the course of their lifetimes, and the bulk of these are not hereditary—just like the colon cancer that had plagued my grandpa two years before the ham Christmas, or the bladder and prostate cancer that would dog Uncle Alan twenty years later.

The results of my mother’s surgery were not good. Not only was the lump in her neck thyroid cancer, but one of the lymph nodes was positive too. The lymphatic system operates like a sort of centralized subway for cancer—once the disease jumps the turnstile, it can take a train to other places in the body and set up little terrorist cells.

My mother remembers wearing a blue cowl sweater dress at Christmas Eve dinner and later at our church outing. All the kids in our congregation dressed in robes at the early service, sat in the front, and sang carols. As a Sunday school teacher, my mother robed up to chaperone. But because of the surgery, she says, “I couldn’t sing at all, and my voice was very weak. And I was tired and I was scared because this had come out of nowhere, and I was really scared about making it through.”

What little else we collectively remember from that Christmas—beyond the ham and the cancer, of course—comes from my aunt Cris’s diary, which she, like her father, Roy, has kept since childhood. That Christmas “was the only time I’ve seen your father really upset; your father was completely wiped out. He just looked grim. He just looked really, really grim,” she tells me on the phone. But after my mother came home from the hospital, he looked better. I gave a dance recital in a silver dress, her diary says. My mother remembers that frock, an outfit for playing dress-up that she had made out of thin, shiny plastic fabric that frayed badly around one of the seams after I’d worn it a few times. We played games and did puzzles, and according to my aunt’s diary, my mother proclaimed it the “best Christmas ever.”

When I tell my mother about this twenty-five years later, we laugh. Mom, I say, if you could pick any one Christmas to relive, it’d definitely be that one, right? Oh yes, she says, nothing like a cancer diagnosis and organizing a huge dinner while recovering from surgery to make a holiday really great. But after being in the hospital for so many days following her thyroidectomy, she says, being alive and at home probably did feel like the best thing ever. Of course, her side of the family has a tradition of playing their emotions close and their medical diagnoses closer, of smiling and soldiering on even in the face of tragedy. Perhaps this is why I did not know, until I began interviewing my aunt, that the ham Christmas was also my aunt’s last one with her natural breasts.

A few days after the holiday, after she and Uncle Alan drove back to their place in Cleveland along with my uncle Mark, she had both of her healthy breasts removed and reconstructed with fat from her abdomen in order to reduce her risk of breast cancer, a cancer that had already hit four members of our family—including her mother and her younger sister.

Neither Cris nor Alan or Mark remembers much of her operation and recovery. Alan and Mark killed time during the eight-hour procedure buying some piece of stereo equipment. Mark wanted to be useful to his sister, in part because he hadn’t been too involved in helping out after the cancers of my mom and grandmother, and he felt a bit guilty. On New Year’s Eve, Mark and Alan left Cris’s bedside to eat oysters at a nice restaurant down the block from the hospital. And eventually, on a cold January day after Mark left, Alan brought his wife home from the hospital, driving carefully in the ice because every bump caused her pain. Since then, my aunt has not been able to sit up from a supine position without the use of her arms, a side effect of the reconstructive surgery that took fat and muscle from her stomach to make her new breast mounds. As the doctors warned her, no more sit-ups.

Meanwhile, back in Washington, DC, in the post-holiday, ham-leftover eternity, things at my house took a sharp turn for the worse. About a week after my mom’s thyroid operation, she developed a huge lump at the surgical site. I remember it as a lemon-sized goiter on the right side of her delicate neck. My mother, though, tells me that it was a lump the size of an olive, a lump that felt heavy for its small size, as heavy as her anger and fear and desperation, a solid blockage against her fierce desire to live and see me graduate from high school and college, get married, and live the happy and fulfilling cancer-free life she had planned for me. Perhaps it is a false memory, but I can see her sitting on the beige-carpeted stairs in our living room, touching her neck, saying to my father, “Here, Dickie, feel this,” and guiding his fingertips to it, then laughing hysterically, because of course it wasn’t a lemon or an olive. It was the cancer, come back like a horror-movie zombie that just. Won’t. Die.

“It was at the point where that lump came back that I got really scared,” my dad told me years later. “I guess that thyroid cancer comes, like all these other cancers, in different flavors, and one flavor kills you immediately, and the other flavors are not so serious. So when that thing came back I thought, ‘Oh my God, what’s going to happen now?’ I thought that she was not going to survive this one.”

My mother has had too many hospitalizations. Of course, I can’t possibly remember any of the early ones. I was only eighteen months old at her breast cancer diagnosis, when she had her first mastectomy. Friends took care of me during her chemo and radiation, although once she couldn’t find someone and took me with her to an appointment. The nurses apparently let me watch her on one of the machines through the window, making my mother livid. Close to Thanksgiving, she’d been hospitalized because the radiation and chemotherapy had deprived her body of its ability to fight infection, and she’d gotten a bad hangnail that turned into an extremely high fever. We had been planning to visit her parents in Arkansas, she tells me, so my grandparents simply loaded the turkey into the car and drove to see us in Dallas, where we lived at the time. They brought pumpkin pie to the hospital for her, she said, and the day after she got out we all went on an excursion to the mall so that I could have my picture taken with Santa, a trip that must have exhausted her as much as it delighted me. A few months after her mastectomy, she found a lump in her other breast. “They were pretty sure it was benign, but I thought, ‘Well, if this is happening, do I really need this breast?’ ” she tells me. By the following Christmas, she’d had her remaining breast removed prophylactically, and then a year later she had reconstructive surgery, followed by a hospitalization for some post-surgery complications, and then again for nipple reconstruction with the darker skin from her groin. By that time I must have been four or five.

My mother remembers my fascination with hospital food during one of the visits. The compartments of gelatinous foodstuff repelled her but entranced me. The food came in a special tray! I sucked needles of ice out of the tinfoil lid of the orange juice cup and the nurses gave me ice cream. All I remember about her reconstructive surgery is that another of my aunts fed me spaghetti and guacamole—two of my favorites—and that I wasn’t allowed in to see my mother because I was too young, which upset me. It’s funny, because my uncle Mark’s only memory of his mother’s numerous medical treatments two decades earlier is that after her first mastectomy, the doctors wouldn’t let him into the ward to visit. He was eleven and remembers thinking that he was very mature at eleven and that it was ridiculous for them to forbid him from seeing his own mother.

My mother wasn’t done after the reconstructive surgery. She’d end up hospitalized for the thyroid removal, radiation treatments for the thyroid cancer, an implant replacement, and, five years later, a hysterectomy, appendectomy, and oophorectomy in one fell swoop.

My mother has many memories of her breast cancer treatment. During the mastectomy, she’d been in the hospital over my father’s birthday, and since the hospital wouldn’t let kids into rooms, she stuffed her bra with Kleenex so she wouldn’t look different to me and then came down to the lobby to see us and to give my father a briefcase she’d purchased weeks before. “All in all I tolerated the chemo pretty well,” she wrote to me decades later.

It was awful to lose my hair so quickly—it came out by the handful one day in the shower. I was not sick to my stomach except for one time. I was tired a lot and worried all the time. My taste for certain food left me but I did not lose weight—in fact I gained some weight. Your dad was loving and close to me during this time when I felt so unappealing. He took care of you a lot. I am sad to know I just can’t remember your second birthday. Sometimes you would put on my wig and go running into our bedroom laughing and we laughed with you.

She remembers my father and me singing “Zip-a-Dee-Doo-Dah” once in the car during the chemo period. “You both were smiling so hard I thought to myself, ‘I will remember this time forever,’ ” she wrote. She wore one of my father’s undershirts beneath her gown when they went to the law firm Christmas party, because doctors had drawn on her skin in permanent marker to target the beams for radiation therapy and she didn’t want the ink to rub off on her dress. Friends and family called and visited and took care of me while my mother had her treatment. “I had joined a church that I liked and my faith in God also helped—I felt that presence in the many people who helped me,” she wrote, from the kindness of a nurse who once gave her a back rub to an old friend who dressed up in nice clothes every single day to visit her at the hospital.

My archetypal memory is this: my mother half inclined on a hospital bed, surrounded with large loud machines and hooked to an IV bag that sends tubes into her hand, where white tape covers the needles. She looks dazed, slightly hazy, but she has spackled a vague open-mouthed smile onto her face for my father and me. Her lips shine with Vaseline that sits in a little paper cup on the bedside table, with a long cotton swab planted in it like a stick of incense. A Styrofoam cup of ice chips sits next to it, the only thing she is allowed to battle dry mouth because solid food might make her nauseous. The skin beside her eyes crinkles because she is pleased to see us, but also because she’s in pain. When I am allowed to hug her, if I’m allowed at all, I have to do so gently. The painkiller makes her legs itchy, and she scratches them up and down under the unflattering hospital gown. Sometimes, I watch her sleeping amid the whirrs and beeps of the machines. When her smile becomes too bright and tight, or the hollows under her eyes too desperate, my father and I know it’s time to go home.

After the ham Christmas, she received the first of a lifetime of radiation treatments. The thyroid thrives on iodine, so one basic method of killing thyroid cancer is this: carve out what you can, starve whatever remains of iodine for a while, and then feed the patient radioactive iodine. The hungry homegrown terrorists gobble it up and die from the radiation damage. Because of my mom’s neck growth, the doctors didn’t wait to starve the cells. They started the radioactive iodine immediately. These hospitalizations were the worst because the doctors would isolate her in a corner room and forbid us from touching her or even getting close to her. Too much exposure to radiation causes cancer, of course, so these measures existed to protect hospital staff, visitors, and other patients. They lined the floor and walls with dark garbage-bag plastic and taped a line on the ground that visitors could not cross. When the nurses brought food, they would dress up in space outfits, wheel a cart up to the line, and leave. Then my mother would trundle over with her IV and tote the food to her bed. Visiting her under these circumstances felt cruel when I was a child. My father and I would inch right up to the line and tell her how much we loved her. We stood so close—mere yards—but the gulf between us felt vast and intractable. More than anything, I wanted to run across that line and fling myself around her neck to be held and comforted, yet it was impossible. Every five or ten years, my mother still receives this treatment for the incremental levels of cancer left in her body, though she is approaching the lifetime limit for such radiation, a line beyond which her risk of developing certain other cancers will climb.

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 f...