by Lizzie Stark
But of course, people noticed. A Latina cashier at the supermarket stretched her hand toward my stomach and asked when I was due. A white lady in line at the CVS, with three kids tugging at her, asked me too. While I was at a convention in a hotel, the woman restocking the paper towels in the ladies’ room struck up a conversation with me about my dress, and prefaced the question with, “Don’t be mad, but …” It was most awkward in social situations—people I was slightly related to or people I’d just met at parties—and it was worse when someone reverently touched just below my breasts, which had gotten huge from all the weight gain. How do expectant women bear this invasion of personal space? I imagined using a machete to sever those hands at the wrist and then stringing them into a necklace I’d wear out in public. No one would ask me if I was pregnant then. These people meant well, of course—many of the unpleasant reminders came from immigrant women hailing from a different social context, who asked me these questions as if partaking in my supposed joy. Paranoia set in. Did that guy on the subway give me his seat because I was a woman and looked exhausted or because he thought I was pregnant? While I had been fielding the occasional question about what might or might not be happening inside my uterus, even when I was twenty-three and twenty pounds lighter, I loathed the constant reminders that my body was as out of control as my emotions.
The pregnancy questions hurt because soon I would give up breastfeeding. And while in the scheme of things it’s a minor sacrifice, I felt angered that I had to give up anything at all, that the world’s tiniest scalpels could come in, slice off a bit of my DNA, and tell me the future, while the solution remained the same draconian one that Frances Burney had endured more than two hundred years before. I also wasted energy feeling angry at myself, for my undisciplined eating, for my choice of food, for my fatness, and because, as a feminist aware of the discourse around women’s bodies, I should have inoculated myself against this sort of self-hate. Congratulations, prevailing beauty standard, you won a pyrrhic victory. Intellectually, I knew that gaining weight wasn’t immoral and didn’t make me a lesser person, that I shouldn’t let the extolled concept of skinniness get inside my head and make me feel inadequate. But we can’t always feel as we should. When I looked in the mirror I saw an ugly lump, transparently trying to deceive the eye of the beholder with a black dress.
I found it difficult to be around people other than George. I did not have many friends where we lived in New Jersey—we had moved there because George was working on a PhD in biophysics. Most of his friends were scientists. I telecommuted into my news job but otherwise worked for myself, alone in a coffee shop. So when we went out, it was with his crew. I felt I couldn’t connect with them. They had many fine qualities—smarts, intellectual curiosity, kindness, humor—but they made physicist jokes about angular momentum, and my humanities-oriented mind felt out of step, out of place. When I saw them at parties and gatherings, we made charming small talk, but any social interaction at all felt like fingernails on a blackboard. Emotion had rubbed me raw, and it exhausted and pained me to have to smile in public. We turned down a lot of invitations, and I felt guilty because I was poisoning George’s social life with my misery. If we did not accept some, soon they would stop coming. Sometimes I sent George without me, but that had its price too—I went whole days without really talking to anyone, and when I was alone in the house at night I read up on cancer and wallowed in misery.
Eventually, I recognized my symptoms—the constant crying, weight gain, lack of interest in socializing, and reliance on a nightly cocktail as a sleep aid—for what they were: depression. A trip to the doctor netted me some antidepressants, and even though they took a few weeks to really kick in, the simple act of having sought help made me feel immediately better. Soon, I was only crying once a day, and then only a few times a week. It was a relief to not have to feel so miserable all the time, but it came at the price of distance. I felt as if I were observing myself through a pane of glass. I could remote control my own actions—but I was unmoored from myself, mind divorced from body, emotions from passions, and it felt unsettling. If I could not feel grief as keenly, then I could not feel joy as immediately either.
As I reached this place of tentative stability, I began searching for surgeons. The first stop was my oncologist, who let me know that, generally, teams do these operations. I would need a surgical oncologist, who would cut into my breast and remove the tissue, as well as a plastic surgeon, who would reconstruct my breasts. My oncologist gave me advice I’d later heed, namely that he had found that, of the two, it was more important for women to click with their plastic surgeons, that this personal relationship, with the person who would, after all, be creating the aesthetics of your new body, was more important than your relationship with the person destroying your old one.
I knew from my research on the Internet that techniques for mastectomy and reconstruction had advanced quite a lot, even since my mother’s time. For starters, the surgical oncologist could use many different sorts of incisions to remove my breasts but leave the skin intact. There are oblong incisions shaped like an eye, where the nipple would mark the pupil. There are incisions named for tennis rackets, anchors, and keyholes, and of course, it is also possible to remove the breast through a simple small incision in the crease where the breast meets the ribcage, a place called the inframammary fold. Once the cut has been made, it’s possible to remove the breast tissue with a scalpel, as if skinning you from the inside out, or with a cautery iron. Finally, the surgical oncologist may or may not remove the nipples.
That’s the first thing I decided—that if it was possible, I would like to keep my nipples. Keeping your nipples isn’t standard, because nipples aren’t skin—they’re breast tissue, the place where milk ducts exit the body. Since the point of this surgery was to remove as much breast tissue as possible—though no surgeon could get every single breast cell—it made sense to remove nipples along with everything else. But I stubbornly wanted to keep my nipples, in part because I thought it would help me feel more “me” after the surgery, but more importantly, because some women who did nipple-sparing surgery maintained some skin sensation in them. Removing the nipples naturally guaranteed loss of nipple sensation in addition to the numb skin mastectomy creates in certain parts of the breast, since the operation cuts through nerves as well as flesh. Since nipple sensation was important to me, the risk of keeping a small bit of breast tissue in exchange for the benefit of possible nipple sensation was one I felt willing to take. There wasn’t really science on whether this was a good idea or not, but my oncologist passed me some papers suggesting that breast cancer almost never starts in the nipple, and that was enough to make me feel vindicated, justified, in choosing to spare mine.
I decided that I’d also like my incisions to be in the inframammary fold and nowhere else. That way, my breast fold would hide the scars, even while I was naked.
Plastic surgery made the choices even more complicated. The two basic methods for breast reconstruction are implants and tissue flaps. Implant reconstruction uses synthetic materials—sacs of silicone or saline—to create a new breast, while flap surgery uses tissue from a donor site on your own body, like your butt. Each method has dozens of variations, benefits, and drawbacks. Implant surgery tends to be less complicated and have a shorter healing time but of course involves having foreign objects inside you semipermanently, which freaks some people out. And implants frequently need replacement five or ten years down the road, so there is a risk of repeated surgery. Flap surgery is more permanent, but it’s also more complicated because it involves surgery to the donor site as well as to the breasts. Because of this, it has a longer recovery time and the complications tend to come immediately after surgery, when tissue can go necrotic and die.
Initially, I thought flap surgery sounded cool. Doctors could tunnel tissue from the donor site up to where it was needed, or they could actually detach it from your hips, ass, or stomach, and reattach it to your breasts in a techni
cally complex but aesthetically satisfying procedure. If you gained or lost weight, your breasts would still fluctuate with that after some sorts of flap surgery. I liked the idea of taking the unwanted spare tire around my middle and turning it into breasts. A tummy tuck and a boob job at the same time—if the gene had depressed me into weight gain, maybe the magic of science could fix that at least. It sounded like the silver lining of this whole shitty cloud.
My aunt Cris had chosen flap surgery—to preserve the blood supply, her doctor tunneled stomach under her skin up to her breasts. She’d always been thin—in high school her parents had thrown her a party when she broke one hundred pounds—and her surgeon said she was the tightest person he’d ever worked on, in the margins of what would work for this procedure. The resulting breasts were smaller than her originals, which suited her fine. “I had always been a little top heavy,” she says, “with scrawny arms and scrawny legs,” and her new rack suited her better. After the surgery, the skin across her stomach was very taut and flat, thanks in part to the Gore-Tex screen embedded in there to strengthen it.
I booked an appointment with a local plastic surgeon, one of the few in the state who performed the free-flap procedure, called a DIEP flap, in which the surgeon detaches donor tissue from your stomach or hips, puts it up on your chest, and then reconnects the blood supply using microsurgery. Tall, thin, and dark-haired, he gave me the distinct impression of a used car salesman on the prowl for new customers. “Put away your notebook,” he told me. “I usually find that patients retain information better the first time if I just give it verbally and they listen rather than writing it down.” Oh really, Doctor? I wondered in my head. I didn’t realize you were an expert on my personal cognitive processes. I am a reporter after all. Processing information while writing notes is how I make my living.
But I’m an obedient patient, so I put my notebook away and let the facts fly over me. He talked rapidly, explaining that all women really wanted was cleavage that looked reasonable in low-cut shirts, and he could give that to me—and to any friends I might have who were interested in boob lifts. We could get boob lifts together! he told me. When he heard my mother hadn’t had revision surgery on her implants in several decades, he told me that it wasn’t normal for a woman in her late fifties to have such perky breasts, and that if we came in together he could revise them so they drooped, just like they were supposed to.
A nurse came in to watch for malpractice suit protection—standard procedure—while he measured my naked chest with a measuring tape and squished my copious stomach fat down in his hands to get a sense of whether I had enough to make new breasts. They’d have to be smaller, he said, plus if I was planning on kids, the procedure might make my stomach too tight for pregnancy. I wasn’t sure I wanted kids, but I definitely wanted to keep the possibility open. And it’d leave me with a scar from hip to hip that would be visible in a bikini. Normally he did free flaps on post-pregnancy women who had a pad of fat leftover from childbearing that hung down in a fold where he could later hide the scar. No, for me, he recommended implants. Since I had very round breasts, he said, and traditional implants created a round breast shape, I was a good candidate for the procedure.
First, a surgical oncologist would cut out the breast tissue, he explained. Then they’d lift up my pectoral muscles and stuff something called an expander back there. It would have a port in it right where my nipple was. Keeping the nipples was not a great idea, he said, because of course they were breast tissue. Then over months, he’d take, as he put it, “my special water gun,” hook it into my nipple port, and fill the expander gradually, so that my pectoral muscle would stretch out over time. Once I reached the desired size, he’d do a quick, in-office tire-exchange operation where he’d swap out the expanders for permanent silicone implants. Nipple reconstruction would come later. When could he schedule me? He had an open appointment in two weeks, and he could just call over to the hospital right now if I wanted …
His callousness and condescension upset me. I couldn’t believe he’d demanded that I put away my notebook, tried to convince me that my friends needed breast augmentation, and said that thing about wanting to revise my mom’s breasts so that they looked appropriately droopy. My mother is beautiful. Then he’d pressured me to have the surgery in two weeks. I could have the surgery in two weeks. The idea that it could happen so soon freaked me out. Indignation, irritation, and dread of the surgery combined within me, and when I got back to my car in the parking lot, I leaned over the steering wheel and had a good cry. My new custom. I decided that maybe I shouldn’t be going to these appointments alone, but I hadn’t wanted to pull George or a friend out of work to come. I’d been going solo, as I had to those tension-filled mammograms, because I didn’t want these appointments to feel like a Big Deal. I wanted to pretend, to myself at least, that this was all completely routine and that I was a grown-ass woman taking care of her health and not flinching.
That afternoon, I called my mother to report on the meeting—she’d helped me come up with a host of questions for the doctors, and we had a lot of fun making sarcastic comments about this dude-bro. “Oh yes,” she said. “I desperately want breasts that droop. How did he know?”
I certainly didn’t want that dude reconstructing my breasts—he’d probably give me Real Housewife tits—but even if I did, as with all surgery, it would be wise to get a second opinion. I knew that some of the most renowned surgeons who performed the free-flap procedures and mastectomies on BRCA women operated in New Orleans, but frankly I didn’t want to travel so far for surgery. The pregnancy complication thing and the long recovery time scared me. The DIEP flap has a six-week recovery time from the basic surgery because, in addition to having breast surgery, you’re having abdominal or butt surgery. Nipple reconstruction and “revision” surgery—operations that tweak the final product—mean that it can take almost a year before your new breasts are complete. Most important, though, I wanted my new breasts to resemble my old breasts as closely as possible, and if there was not enough stomach fat, then there was not enough stomach fat.
I researched more doctors. I lived in New Jersey, not so far from New York City, where the famous Memorial Sloan Kettering Cancer Center is. I called them up. “I’d like to see a surgeon,” I said, and listed some names. “I have tested positive for a BRCA mutation and want to remove my breasts.” “You want to see a surgeon?” the woman on the other end said, as if I had asked to borrow a walrus on roller skates from the hospital. “Yes,” I said. I explained that I wanted to have my surgery in about six months. “Why do you want to talk to the surgeon now?” she asked, her tone of voice suggesting that she simply could not believe my nerve. But still, Sloan Kettering is a good hospital, so I soldiered on. “Because I’d like to have a sense of the person operating on me,” I said. “We don’t do that,” she said, “until right before the surgery.” The irrationality she seemed to be projecting on to me made me feel alternately enraged and ashamed that I was causing trouble. Of course I wanted to meet the person who was going to hack off parts of my body well in advance of the operation, because although my risk was high, unlike an actual cancer patient, I had the luxury of time. She continued treating me as if I were making a crazy request. After another five minutes on the phone I discovered that they wouldn’t let me see a surgeon at all until I had been to see their genetic counselors. I told her I had already done genetic counseling, that I had my test results, that I was ready for surgery. Nothing doing. The next open genetic counseling appointment was in four months. It felt too long, but I took it just in case. When I got off the phone, I started crying again. I didn’t like being treated like a crazy hypochondriac. She was probably having an off day and doing her best. I was doing my best to hold on to the shreds of my sanity too, but even with the antidepressants, it was difficult.
By this time, I was addicted to the FORCE website. FORCE—Facing Our Risk of Cancer Empowered—is an advocacy group for BRCA mutants like me. The best thing on the
website was the forums, where previvors—survivors of a genetic predisposition to cancer—could talk and give each other advice. I found the word “previvor” sort of creepy because I thought it implied that this gene now constituted a central part of my identity—and though it has shaped me, it does not define me. At the same time, it felt comforting to have a label, to know that although I felt like a one-eyed tap-dancing lizard, I was not alone in feeling depressed, angry, desperate over something that was, after all, really nothing. Though I no longer felt like one, I was still a healthy twenty-seven-year-old newlywed. I posted anonymously on the site and learned about the sorts of surgery women in my shoes have, and this was where I found out about the one-step, or direct-to-implant, surgery. Thought it’s often billed as a brand-new reconstructive technique, the one-step with nipple sparing has been around in some form for at least thirty years. My mother’s cousin Kathy had one after El’s death in 1979. Essentially, the surgeons perform the mastectomy and complete reconstruction in one four-to six-hour-long procedure. The pioneers of a new and improved version of this operation, a two-person surgical oncologist-plastic surgeon team operated about two hours away from me and specialized in BRCA women. I called and booked appointments with both offices.
These appointments had become increasingly intense for me, and I didn’t want to go it alone anymore. This was a Big Deal. I was getting ready to cut off my healthy breasts. So I called my mother and asked her if she would drive up from Washington, DC, to New Jersey and visit these doctors with me. After a mastectomy for cancer in one breast, a voluntary mastectomy in the other, a later bout of reconstruction, a thyroidectomy, and a hysterectomy, to say nothing of the gum grafts, my mother is pretty smart about surgeons and surgery. She’s shopped around for surgeons before, and even fired a few. For my mother, bedside manner is important. The day after her breast cancer diagnosis, she remembers talking to the oncologist on call in the hospital, who answered her first question, “Can I have children?,” with a blunt “No,” and her second question—“Is the whole tumor cancerous?” (since she, still shocked from the diagnosis, thought perhaps it could be a cyst with cancer in the middle)—with a sharp “Yes.” “In retrospect,” she says, “he had to deliver bad news to me,” which probably wasn’t pleasant for him either. Still, the following day a new oncologist was on call. He came into her room and struck up a conversation about the pretty flowers someone had sent. My mother loves flowers. That little human touch, the kindness to her psyche, made her ask to be switched to become his patient.
