When Your Breasts Try to Kill You
Rebecca Johnson
Rebecca Johnson
A few years ago, a man in Australia came across a round rubbery object on the beach about the size of a small tortilla. In a panic, he scooped it up into a plastic bag and hurried to the local police station, convinced a woman had been mutilated by a maniac who had prised her breast implant out of her body. The police had a good laugh when they saw the object. It was a jelly fish. That’s what I have implanted on the right side of my body—a silicon disc that’s a dead ringer for a jelly fish.
I discovered I had breast cancer the way a lot of women do—a routine mammogram revealed abnormal cell growth in the right breast. One out of every eight women in America will develop breast cancer at one point in their lives, but for some reason, when the nurse came back to the waiting room to call “Ms. Johnson” back for a consultation, I just assumed it was someone else. In my defense, Johnson is a common name.
The radiologist described the suspicious mass as pea-sized and recommended a biopsy. I asked if I could see it. She turned the computer screen my way and there it was, a distinct circle suspended in a ghostly web of white , like the egg sac in a spider web. “Is it cancer?” I asked. The doctor turned the screen back to herself. I have noticed this about doctors—none of them wants to be the bearer of bad news. If they can pass the buck, they will and, really, who can blame them? What kind of life is it, telling people they’re going to die sooner than they think? “We’ll need to do more testing,” she answered impassively.
And that is what we did. More testing. The mammogram gave way to the sonogram, which gave way to the biopsy, which gave way to the MRI. It was like hitting the plus sign on Google maps over and over, getting closer and closer to the target. Soon we would be able to read the writing on the garbage cans next to the back door. Initially, my surgeon had assured me I could get a lumpectomy and keep the breast but, as the results of the testing got grimmer, the prognosis changed. My tumours may have been tiny—more lentil than pea—but they were numerous. Four, to be exact. In the end, I felt like Alice in Wonderland. “Off with her breast!”
The night before my mastectomy, I stood naked in front of the bathroom mirror and held my right breast in my hand, like an old friend in need of comfort. Good bye, I told it, thanking it for its years of service. Like every sentient woman in the first world, I have spent stupid hours bemoaning my physical flaws, but in all that time I could never think of anything bad thing to say about my breasts. Not too big, not too small. Not too droopy. During sex, they were a pleasant erogenous zone and when it came time to breastfeed, they performed yeoman duty. I’d always thought men were a bit silly in their worship of breasts but, actually, they are right. Breasts are wonderfully springy, joyful things. I had so much to be grateful for but, of course, I only realized all that on the cusp of its loss.
The problem with breast reconstruction after cancer is that you have to make your decision in the midst of all these other traumatic life and death decisions. Only after discussing the possibilities of chemotherapy, radiation, mastectomy, and statistical outcomes for survival are you asked to consider reconstruction, at which point you’re thinking, who cares? What’s a breast compared to a life? On the other hand, (assuming treatment is successful) you will have the rest of your life to live with that void on your chest, so you really do have to pay attention. Plus, re-construction is the one area where you actually get to make your own decision, as opposed to treatment, where only a fool would decline to follow standard protocol (don’t get me started on alternative medicine).
My options for reconstruction were 1) do nothing 2) get an implant 3) undergo a six hour “DIEP flap” (Deep Inferior Epigastric Perforators) surgery in which a plastic surgeon removes flesh from the stomach, assuming you have sufficient excess (not a problem!) and then painstakingly reconnects the blood vessels from your stomach to the blood vessels in your chest, trying as best as possible to match the shape of the remaining breast.
I considered declining reconstruction—I like the idea of being that indifferent to convention. On the internet, you can see lots of pictures of women who made this decision. They look proud, defiant and like they could run an Ironman. That’s not me. I hate being the center of attention. If I only had one breast, anytime I wore anything form fitting, people would notice the lopsidedness. I was lucky not to need chemo, not just because I wasn’t going to have toxic chemicals dripped through my veins, but also because I would not have to endure the sad face of strangers contemplating my bald head and its attendant message—this person may be dead soon. I know, because I can’t help making the same sad face when I share an elevator with those bald people at Sloan Kettering, the hospital where I was treated.
I was tempted by the idea of reconstructing the breast with my existing flesh but the procedure is a grueling six hour ordeal. The resulting breast would be soft and warm like my own flesh but, like all the options, it would still be numb, like a lobotomized cousin who comes for dinner every night. Once the nerve ending are cut during the mastectomy, sensation never comes back. Shaving under your arm will forever forward be a guessing game—you know a blade is scraping your flesh, but you can’t feel a thing. After DIEP surgery, you also need to spend at least five days in the hospital, the cost of which runs into the hundreds of thousands of dollars, although insurance pays for it. I could not fathom so much trouble just so I could have a soft breast.
So, the silicone implant. But only one. There is a growing trend for women with low risk cancer (Stage 1 and under) in a single breast to opt for a double mastectomy with reconstruction. The thinking is, they’ll never have to worry about cancer again and will get a great rack to boot. In reality, the risk of developing cancer in the healthy breast remains the same as if you have never had cancer—about 1 in 8. And as for the myth of the “great rack”, read on. If I had been tempted, a conversation with a friend of a friend put an end to that. “I can’t tell you how much I regret giving up that healthy breast,” she confided. “It was probably the biggest mistake of my life.”
Each option, it turned out, was its own political minefield. Not long after I made mine, I ran into an acquaintance who’d had a mastectomy but decided not to reconstruct her A-cup breast. After hearing about her diagnosis, I had leant her all the breast cancer books in my library (including Dr. Susan Love’s, still the best) but when I told her I’d been diagnosed and opted for the implant she said, “Really? I didn’t think you were the type.”
When I met with my plastic surgeon to discuss the operation, he explained there were two shapes of implants to choose from –round or teardrop. “I want the teardrop,” I told him confidently, imagining the fake-looking hockey puck boobs on strippers’ chests. I looked at my husband for confirmation, but he only nodded, a ghastly expression on his face for which I couldn’t really fault him. If I heard a doctor discussing attaching a fake testicle to his body, I’d be queasy too.
“We’ll see,” the doctor answered. Apparently, some decisions get made on the operating table when the surgeon can finally see inside the web of musculature and bone that make up the chest cavity. Unfortunately, the person who will have to live with what is implanted in her body for the rest of her life, is unconscious at that moment. I looked down at my handsome doctor’s perfectly polished Italian loafers, his elegant suit, the silk handkerchief in his breast pocket and panicked. A man I did not know at all was going to choose my new breast?
“Listen,” I told him, “if I were a pair of shoes, I’d be Birkenstocks.”
“So,” he answered, “comfort above all?”
“Absolutely.”
*
When I woke from surgery in the Evelyn Lauder Breast Center on Manhattan’s upper east side, I found myself wondering where my breast had ended up. Where do all the tumorous tatas and malignant moles go when surgery is over? Are they composted? Or do they end up rolling down York Avenue at midnight, headed for a landfill where the seagulls hover, hungry for a taste of flesh?
Recovery was gruesome. A part of you has been excised but your body wasn’t given notice. Fluids continue to flow but if they pool, like excess water in storm drain, they make a welcome home for bacteria, which can cause infection and even death from sepsis. Twice a day, I needed to empty bulbous drains attached to my body by long tubes. The night before my surgery, I watched a You Tube video on how to drain them and thought, oh hell no. At night, I would inadvertently roll on to them and they would open, soaking the sheets in a mixture of blood and clear pus.
It took me weeks to look at my new breast. When I finally worked up the courage to take a good, hard look, I felt shock at all the angry red scars, followed by relief. The surgeon had gone with the round implant and done a lift on the other so the two would match. In a million years, I never would have gotten a breast lift but the look of it wasn’t bad (assuming you looked past the scars which would eventually fade). The feel of it was the problem. In the doctor’s office, the implant had felt squishy and almost playful—like something you’d give a three year old to get her interested in science. But once it was placed under the muscles of my chest wall, it felt hard and strange and just wrong. Whenever I hugged my then ten year old son, the top of his head would hit it and I would wince, not from pain exactly, but from the physical dissonance of knowing something alien was in my body.
On the websites devoted to breast cancer, I read other women complain about tightness and discomfort. One woman mentioned how weird it felt to go swimming in cold water, when the rest of your body stays at 98.6 degrees but the silicon hardens into an immoveable lump. I am a tennis player. The moment during the serve when the racquet makes contact with the ball while the arm is fully extended overhead is when I feel the implant the most. It’s like the plucking of a giant harp string. I never cease to wonder if everything is going to unravel at the point of impact, causing the unloved blob of plastic to slip its bonds and travel through my body, ending up somewhere around my ankles.
What I dislike the most is lying down and having the rest of my flesh droop accordingly while the implant remains tumid and unyielding. Whenever I went to visit my oncologist for checkups, she would ask how things were going and I would bite my tongue about the odious implant. She spent her days with people dying of cancer, and I had gotten off pretty easy in the cancer game. No chemo. No radiation. Just the mastectomy and the drug tamoxifen for the next ten years. To complain about an implant seemed churlish and ungrateful. “Fine,” I always lied.
We don’t do a great job of preparing women for life without a breast. If a soldier loses her leg in combat, the whole world can see. If a woman loses her breast, we carry our scar in secret and rarely talk about it out loud. Angeline Jolie quite bravely told the world she was having a prophylactic double mastectomy and oophorectomy in order to avoid the cancer that killed her mother and aunt, but after that we heard nothing until the bombshell news of her divorce. While the tabloids were scratching away for clues to the marriage’s dissolution, I couldn’t help feel that I understood better than most. Life after reconstruction isn’t just hard on the woman, it’s hard on the man who is with the woman. We’re weepy, we’re sad. We miss our breasts. I never felt like “ less of a woman”, a stupid phrase if ever there was one but I felt like less of a human because I had lost something I cared deeply about. Moreover, I had gotten a spine stiffening scent of my own mortality.
When it came to sex, I was impossible. If my husband didn’t touch it, I accused him of being grossed out by it; if he did touch it, I was grossed out by the sensation of being touched but unable to feel. Aging brings its own depredations to the human body, this just felt like one more insult to deal with. But aging also brings grace and wisdom, an acceptance that our bodies do not remain static and, at a certain age, we are not loved for how we look but for who we are and how we handle the inevitable challenges of our lives. When the reality of my diagnosis sank in, I had to move from thinking ‘Why me?’; to the more realistic question, ‘Why not me?’
The first time I undressed in the gym, I carefully covered the fake breast with a towel so no one could see but now, almost two years after the surgery, I have come to a reluctant truce with my new breast. Our bodies are maps of our lives--I have a scar on my thigh from the time a thug pushed me off my bike on the Brooklyn bridge, a chip on my front tooth from when I slipped on the wet tile of the YWCA pool, a long scar across my abdomen from the C-sections that yielded the greatest joys of my life and now I have these scars on my chest that bear witness to that brush with death. I’ve never liked the cancer survivor metaphor and its implicit message that anyone who dies isn’t a survivor, as if cancer were simply a matter of will. I did not “battle” cancer; I meekly (sometimes snivelingly) followed every single thing the doctor said to do so that I could squeeze out as many years as possible on this planet. When I was told my remaining breast was cancer free at my one year anniversary scan, I felt enormously lucky. If the towel slips and someone sees the scar that tells that story, it’s not the end of the world.
Rebecca Johnson
Rebecca is a writer and editor whose work has appeared in various publications including The New Yorker, The New York Times, The NYT Magazine, and Vogue. Johnson is also the author of the novel And Sometimes Why.