Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree

by Lizzie Stark

  Ashikari and Salzberg come to check on me a few times, jibing at each other as they open the surgical bra, staring at the pulpy, blackened mass of my chest and nodding with approval. I’m healing well. I try not to look because I’m still in shock and I don’t want to dwell on what has just happened. It’s difficult to look down anyway—the surgery has moved my chest muscles around, so it’s hard to bend my chin forward. My father encourages me not to be shy about using the on-demand morphine button because it’s the good stuff and I shouldn’t have to suffer pain. It makes my legs itch, but it also gets me so high that I don’t care that my breasts have been hacked off, so I use it until it is gone.

  The drive home from the hospital the following day feels interminable. Because the surgery has moved my pectoral muscles, I’m not supposed to lift anything over five pounds for the next few weeks. I’m not even supposed to push a shopping cart at the grocery. I’m too weak to close the door to the car or even fasten my seat belt. Forget opening the sticky door to our apartment.

  At home, ensconced in the chair my parents brought for me, I hunger for Chinese braised duck, spurred by memories of the dishes my father and I cooked after the ham Christmas, when my mother lived in the horrible, garbage-bag-lined corner room of the hospital. Won’t it be too rich for her, since she’s just out of surgery? my dad wonders. Well, if she’s hungry for it, my mother muses … Everyone bustles around the house trying to make things just right and failing, because just right would mean never having had to cut off my breasts. The duck stew tastes delicious, rich with deep soy sauce and the smooth flavor of emulsified fat. We have it over noodles with braised root vegetables, and my father simmers a vat of beef stock on the stove for the soup he’ll leave us with when he returns home, though my mother will stay on for as long as we need her. Since the men are squeamish about it, my mom takes me into the bathroom to milk the blood and lymph out of the four plastic tubes that emanate from my Frankenchest. She measures the liquid that has dripped into the attached bottles and empties them, as she will twice a day for the next week or so. When she milks the drains, they create suction out of my wounds, which aches a bit, even through the painkillers I’m on.

  The next morning, I wake stiff and sore, since I haven’t moved in the chair all night. When I sit up, the heavy weight of my new breasts falls down and hurts. I take a painkiller and an antibiotic, and suddenly, I am throwing up. With each heave, my entire rib cage feels like it is unhinging to spill my new breasts onto the floor, as if my chest will burst and my heart will come out through my mouth and into the metal bowl, along with the pills, last night’s dinner, and finally, bitter green bile. Two frantic phone calls and a trip to the pharmacy later, I have nausea medication to sustain me until I’m off the pain meds.

  After my father returns home, my mother sleeps on our futon next to the chair I inhabit unless I have a follow-up appointment with the surgeons or unless she drags me out on a little excursion to get me up and around. Because she has been through so many surgeries, my mother knows exactly how to help. In between seeing Salzberg and Ashikari, we have a few hours—too short a time to drive home—so she takes me to the mall where I have my hair washed and blow-dried, something I haven’t done in several days because I’m not allowed to shower until the surgical drains come out. While we are there, she finds a dress that zips up the front and insists that I try it because it is pretty and because front-closure clothing is all I can wear, since I cannot lift my arms over my head. I dress in leggings and button-down shirts that pooch out over my surgical drains and paunch. She makes George and me elaborate salads with fruit and seeds—fiber to counter the paralyzed sphincters of general anesthesia—keeps track of my pain medication, heats up washcloths so I can sponge off my limbs, and helps me remember to stretch my arms every day. At first, I can’t raise them at more than a ninety-degree angle from my body, but I quickly improve. I feel better once the drains come out and Dr. Salzberg puts lotion on my hand and shows me how to massage my chest to stimulate blood flow to the skin and break up scar tissue. They have turned from black to purple to green to yellow as the bruises fade, with skin as rough and pitted as an orange peel. I am afraid to touch them, afraid to touch my own body at first, because it is sore—or even worse—numb, and I worry that I might rupture something, hurt myself without knowing it. He has to teach me that it’s OK to touch myself again. Distrusting my physical self in this way feels new; I’ve loved and hated my body before, but I have never, ever feared it.

  And at home, nearly a week after the surgery, after the general anesthesia is out of my system and I’ve mostly weaned myself off the pain pills, my emotions begin to return. My mother has just gone to bed on the futon, and I’m next to her on my chair in the living room, trying to sleep, when finally it hits me; my breasts are gone, and they’ll never return. Once I start to think about it, I can’t stop. How has my mother borne this all these years? How will I be able to bear it for the rest of my life—body parts cut out, strange appendages affixed to my chest. I will never be the same again. How did she do this with a small version of me running around? If I had a baby now, I wouldn’t be able to hold her—it is still a challenge to lift my laptop. How has she carried this secret sadness for all this time? How can I bear it—how can I go on living when part of me is gone?

  I wake my mother up and we talk. I cry. She holds me. And she doesn’t offer false assurances that everything will be all right—she doesn’t minimize or try to distract me from what I’m feeling. She tells me the truth. It doesn’t ever go away, she says, the sadness. It’s always there. This is a loss. But as time wears on, the pain is less keen and arrives less frequently.

  Friends and family send flowers, movies, funny hats, hand-crocheted blankets, red lipstick, and the softest, pale pink zip-up sweatshirt, which I put on immediately and won’t take off. The packages and well wishes make me smile and give me the activity of thank-you notes. I start a needlepoint project under my mother’s tutelage. We watch endless DVDs, stretch my arms, take little walks down the block and back. And one day, like Mary Poppins drifting off into the rain clouds with her umbrella, it is time for my mother to leave. We hug gingerly—I am beginning to realize that her chest has always felt stiff to hug because her implants are firm; her breasts don’t squish the way mine do, or rather, did. It will feel the same way to hug me now. And she drives back to DC in her car, leaving behind a clean apartment and a half-healed daughter and a worried son-in-law in a home that now feels empty.

  It’s nice to be the two of us in the house again, George and me, except that things have changed. For our entire relationship we’ve gone to great pains to keep things equal, and now the surgery has disrupted that balance. It began after my genetic news, an emotional asymmetry, a psychic pain that selfishly demanded attention. Now, the surgery has added a physical unevenness. I pick up some beer on the way back from a doctor’s appointment and find that two six-packs are too heavy for me to carry all the way back to the car. I can’t run errands for us for a while. In the supermarket, George sends me off to get pickles, and I have to abandon the jars in a display case halfway and go find him. After a few weeks, it still frustrates him that I tire so easily—I’m often too exhausted to help make dinner, or clean in tandem, as we always do, or go out in the evenings for anything other than book reporting work. We compromise—I read aloud to him while he performs household tasks, but this long-term inequity, the way this surgery has sucked the air in our relationship to me, as if my breasts are now a black hole, like the ones his astrophysicist buddies study, it changes us. It exhausts my capacity for gratitude and his for patience. I went through something and needed my way, and the chaos lasted for so long that it wore grooves into our relationship. We are ready to get back to our normal lives, but we can’t—they’re forever barred to us, the fruits of paradise lopped off and irreplaceable. Since we can’t get back to the old normal, we flail around trying to discover the new.

  I am trying to adjust to my new body. It’s
unsettling, to change overnight like this. I’ve spent twenty-eight years with my physique, figuring out what sort of necklines look good on it, balancing the top and bottom of my frame. In six months, it’s changed completely—first with weight gain and now with my new larger breasts. I had asked the plastic surgeon to make them a bit bigger, not only because I heard a rumor that, depending on where a woman’s nipples sit to begin with, it can make nipple placement a bit easier but also because I liked the idea of returning enhanced, and because other women listed not going bigger as a regret. But surprisingly, I’ve jumped two cup sizes, and I realize with a shock that, though I had only asked Salzberg to make me a little bigger, at the time I did so my boobs were at their largest ever thanks to my weight gain. I had probably jumped a cup size before the surgery, but in all the emotion, I hadn’t noticed.

  Some of my favorite dresses are too tight in the bust, and I have to toss them. The ones that remain, well, it’s true what my larger-chested friends have been saying all along—tank tops and scoop necks that used to look pleasantly attractive now give me the appearance of a lady of the night. I’m swelled up, oozing out the sides—my cups of silicone runneth over.

  At Nordstrom, where I bought my surgical bras, I let one of the staff fit me for normal lingerie. I can tell I will come back here again, even though the bras are expensive—they fit me with kindness and understanding, not just now, but right after my mastectomy, and I will never forget that. The saleswoman looks at my new breasts in the dressing room and tells me how nice they are. “More women would have mastectomies if they knew they could look like this,” she says. And when the test bras come, they fit me like a glove. “This bra looks like it was built for you,” she says, “as if you were the model for it.” It is a nice compliment to my surgeon, I think, but it makes me feel strange—these bras were built and mass-produced for some nebulous everywoman. The individual flaws of my body have vanished, replaced by Nietzschean überbreasts.

  I buy my bras tight, just like the beautiful mutant postsurgical doctor at Salzberg’s office told me to. As they heal, my breasts will grow into the shape of the bras, and though at more than a month out, much of this has already happened, still, positioning them is important. The first day I wear one of these new bras starts out great, but by the afternoon I’ve learned that the nerves in my armpits are only mostly dead and puffy—I get sore there from the pressure of the underwire, extruding my new plastic tits forward.

  In the coming months, that’s what I realize—I no longer have breasts. Breasts are beautiful and natural. They belong on your wife, who will gaze down with love at your child during feedings. They are large, small, droopy, and soft, pillows to rest your head on, things bras hold up, delicate and vulnerable and sometimes lumpy. What I’ve got are tits. Large, perfectly formed, mass-produced tits. Aesthetically flawless, like Barbie’s, but soulless and universal in their round perkiness, and downright obscene in a tank top or low-cut shirt. Tits are what your mistress has, your trophy wife, the models splayed across billboards. But the rest of my body doesn’t match my twin diamonds—it’s as if I put rims on my minivan—and for a long time it’s confusing to grapple with this. My breasts wanted to be modestly covered, or half-displayed like a necklace in a velvet jewel case. But my tits are for flashing, for cleavage bared to the solar plexus, for unsubtle balconette bras full of artificial enhancements. If I’m going to present a lie to the world, I think, why not go all the way? I buy black lace bras, plunging necklines, and lipstick so crimson and waxy that when I kiss people hello their marked cheeks stay red for twenty-four hours. My modesty has vanished along with my natural body—after so many men and women have felt me up and fingered me on paper-covered tables, I no longer feel I have a right to it; I became promiscuous in uncovering myself to medical strangers, a prelude to the final, ultimate nakedness, beyond mere skin, where men I’d met once opened me up and changed me. Now, decency seems impossible, a grim joke, a bearded disguise so laughable that it ought not be attempted. With my curvaceous new body, even in clothing that covers me to the collarbone, I often look slutty. I can’t help it—I have what still feels like bowling balls strapped to my chest. They feel as dead as bowling balls too, except for the phantom itches I can’t scratch, since my skin receptors have vanished, and the tingling pain in one nipple that the surgeons say means my nerves there are healing. In crowded rooms at parties I slither past strangers, only realizing in retrospect, from their shocked glances, that I’ve accidentally brushed past them with my senseless chest, as if I’m driving a rental and nudged another car because I’m unsure of my dimensions. Sorry, friend, my slutty tits and I weren’t trying to hit on you—I simply wanted some artichoke dip and you were in my way and I miscalculated how much space I needed. I want to show off my new assets—I want compliments about the nice new set of iBreasts I’ve purchased. I also want confirmation that no one knows how fake they are, unless I fess up. Since my reconstruction has made my mastectomy invisible, I also want someone to witness my pain. I flash my new rack to friends in restaurant bathrooms, shared hotel rooms, and saunas. This horrible thing happened to me, I am trying to say with my naked torso. They’re beautiful, everyone answers. What else can they say?

  They are beautiful. My plastic surgeon calls me “Ms. Natural,” my oncologist says it’s a magnificent reconstruction job. I’m impressed myself and pleased that they look so good. If I could, I’d hoist my dismembered breasts in a two-tit salute to Salzberg and Ashikari’s magic hands. I couldn’t have hoped for a better outcome; they look great, and I even have some nipple sensation on one side. It’s just that the new rack was destined to fall short, simply because I never wanted it. I miss my old one.

  Perhaps it’s the skin-deep perfection of my tits that makes me so unhappy about the rest of me. I feel overripe, on the edge of rotten, bursting, like the middle-aged, overweight noir lush that our hero throws over for the girl next door with the interesting nose. My husband still loves me, though. He says so all the time. And he shows me too. But something in me can’t believe him when he tells me I am still compelling to look at. He’s like my mother telling me I look good in pink—after this ordeal, we’re so close that his love obscures his judgment, and he is no longer impartial and trustworthy. Still, it is a relief that my husband finds me attractive even after this surgery. He loves my new body because he loves me.

  It’s not easy to adjust our physical relationship. After our first few encounters, when we wore masks to each other, put on brave faces—him to reassure me that I am still attractive, me to reassure him and myself that I can still be a sexual person—the emotion hits. He’s touching my breasts in bed one night and I can’t feel my skin, only the pressure of his fingers. My breasts used to be a source of pleasure for me; now they’re numb, and it’ll be like this for the rest of my life. It’s a loss for him too because he loves me and because he likes to give me pleasure, and now he can’t do that in the way he used to. He holds me while I sob. I think about the clinical phrase “permanent loss of skin sensation,” such a throwaway line I read past on the way to surgery, a side effect that seemed like a small sacrifice compared to the certainty I’d gain from this operation. I am beginning to grasp the full breadth of its meaning. It’s not the worst thing in the world; but it’s still a loss, and I mourn.

  12 | Heffalumpless

  It’s not easy to let go of fear. In the months and years that follow my surgery, I mostly feel like sunlight has broken through the clouds. No more mammograms, no more waiting for test results, no more fear. When a 2010 study comes out in the Journal of the American Medical Association confirming earlier results that preventive mastectomy in BRCA carriers reduces the risk of breast cancer by 90 to 95 percent, and I see the hard data that my risk is dropped into single digits, that it is now, in fact, lower than the risk of the average woman, I feel relief.

  It’s still unsettling that it takes more than a year to return to my normal energy levels, that I must spend months on physical therapy aft
er a fall while reporting for my first book. While shadowing a source participating in an interactive drama in the woods—picture Lord of the Rings with lower production values—a monster jumps us out of nowhere, and while fleeing down the dark, rocky path, I trip. Because I know my arms cannot bear my weight—I still cannot use them to stand up from a sitting position—I roll forward over one shoulder, wrenching a back already overtaxed by adjusting to the new position of my chest muscles. I ache for months.

  The knowledge of my lowered risk creates an energy void in my life. For the last twenty-eight years I have expended untold time and effort worrying about breast cancer in some form, a silent ever-present hum in the back of my mind. Now, there’s no reason to fear—I’ve lowered my breast cancer risk as much as I can—but the absence of that emotion creates a surfeit of nervous energy. I am so used to being afraid, to organizing my life around this fear that I barely know how to behave. I am Piglet without his Heffalump, Beowulf without his Grendel, an Ahab who has slain Moby-Dick.

  My Heffalumplessness means I must worry about other things—my career, bills, where George and I will move next. But I haven’t worn smooth the grooves of fear, and inexorably, it seeks a new object: ovarian cancer.