Published in EPOCH Issue 02, Aftermath, Spring 2021
At the middle school Fall Festival, I fell into conversation with another mom trying out the giant hula hoops. We both had 7th graders that year. “I think we have something else in common,” said Mala, and she nodded gently toward my chest. It was a moment I had been waiting for.
When the results of my genetic test had come back positive three years earlier, I wasn’t surprised. Breast cancer took my mother’s mother in her 60s, and my mother at age 52. My younger sister was diagnosed at age 44. Though she and I share a lot besides curly hair, tune-carrying ability, and a mutation in the BRCA1 gene that puts us at high risk for breast and ovarian cancer, we’ve taken somewhat different paths. I’ve worked part-time at various gigs while my husband and I raise our two boys. She pursues a demanding academic career while she and her wife, a teacher and minister, bring up their twins. I love spending time with her, and I am sometimes jealous of her professional accomplishments, tasteful mid-century-themed home, and impressive self-discipline around work deadlines and food. But in the health story of our family, I’m the lucky one, the one to be envied. I got to choose.
The breast surgeon wore spike heels and bright lipstick with her white coat. Fluorescent light pinged off her glasses and she talked fast, but she took my hand as she explained the risks associated with my genetic map. “I can’t tell you anything about you,” she announced. “You understand?” I understood. My fate is not yet written, but 60 to 85 of every 100 women with my diagnosis get breast or ovarian cancer in their lifetimes, many of them much too young. Among those whose breasts and ovaries are preventively removed, only 4 in 100 get sick. I’m the eldest of three, and used to getting things first – new toys, shocking haircuts, a driver’s license; jobs, babies, a mortgage. But I didn’t get cancer first. What if I wasn’t going to get it at all?
When our mom looked for paths through the thickets of breast cancer back in 1988, one of her guides was Black lesbian feminist poet and writer Audre Lorde, whose collection of essays on her first round, The Cancer Journals[i], was first published in 1980. A new edition, with a foreword by poet Tracy K. Smith, arrived last October. As Smith pointed out at a recent panel celebrating Lorde’s ever-relevant words,[ii] Lorde approached breast cancer as she approached her political work: sharing her vulnerabilities and her anger, she took the radical step of revealing a health issue considered private to public view, along with the surrounding cultural and political pressures usually left unacknowledged. My mother, a white Jewish woman, didn’t have to deal with the racism that informed Lorde’s experience of managing shock, grief, fear, anger, medical decision-making and strategies for healing in the framework of a patriarchal, profit-motivated cancer industry, but she found much that resonated in Lorde’s account for the work she needed to do. As she navigated her own mastectomy, radiation, and chemotherapy, my mother educated herself on the politics of cancer, demonstrated for increased research on prevention as well as treatment, and wrote about the breast cancer epidemic as institutional violence against women.[iii]
After she died, I took my mother’s copy of The Cancer Journals home with me and stuck it on a shelf with other books salvaged from her library. Two decades later, when my sister’s diagnosis piled on to our grim family history and started me down the slippery slope of genetic testing, I opened it. I was looking, I guess, for some kind of message from my mother, but her yellow Post-Its were long gone; instead, here was Audre Lorde herself. Lorde, facing the news that the tumor in her left breast was malignant, took the time to be sure that the choice to have a modified radical mastectomy was hers alone, not just doing what doctors thought best. She wrote: “I think now what was most important was not what I chose to do so much as that I was conscious of being able to choose, and having chosen, was empowered from having made a decision, done a strike for myself, moved.”[iv]
As the daughter of my mother, I wanted to be part of the anti-cancer revolution. I knew we still had a long way to go. Medically speaking, developments in the decades since her death have saved lives, including new drugs that likely contributed to my sister staying healthy beyond the five-year “survival” waterline, and the genetic testing that now dangled a get out of jail free (well, not quite free) card in front of me and the people who love me. I couldn’t discount these advances. But medical research within a capitalist and white supremacist society, where it has never been clearer that the national government has zero interest in prioritizing public health, has brought us only a little closer to where we need to go. In the US, 1 in every 8 women still confronts invasive breast cancer in her lifetime; more women die of breast cancer than any other cancer except lung cancer. [v] Breast cancer is less commonly diagnosed in Black women than white women, but Black women are more likely to die once they have it.[vi] Carcinogens in our air, water and food, if acknowledged at all, are still seen less as public health hazards and more as risk factors we should each control personally. “Prevention” that demands women remove major sexual and reproductive organs leaves a lot to be desired.
Meanwhile, science-minded family members aligned swiftly with my doctors to advocate risk-reducing surgery. But I too could make my own decisions. I hoped to feel empowered by that.
Saying goodbye to my ovaries was a relatively easy call – my sons at 10 and 13 seemed enough (sometimes more than enough) children for one lifetime; early signs of menopause weren’t inspiring me to draw out the process. I stocked up on flaxseed and evening primrose oil, prepared to dress in layers for the hot flashes, and took the recommended week off work. Those scars are small, and often I forget them.
Deciding on a bilateral mastectomy was more difficult. By my late 40s, my breasts in all their imperfection (asymmetrical; to my mind a little too big to go braless; prone to alarming lumps that had the cavalry called out several times) had done a lot for me. Despite not matching, they were a gateway to the sensual me. I made peace with the larger one after I had babies: nursing on that side was easier. I didn’t want to repay their loyalty with amputation.
On the other hand, I didn’t want cancer and the treatments for it to threaten my life, or shorten my time with my husband and kids. I officially gave myself a year to decide, and promised myself professional help with the choice, but by the time I saw a therapist I already knew the answer was yes. Yes, because personal prevention strategies don’t work – think of the number of otherwise healthy women you know who have battled breast cancer. Yes, because carcinogens are everywhere and there’s not much we can do about it in the immediate term. Yes, because alternative medicine might help once a person has cancer, but my goal was not to get cancer.
The next decision, whether to replace the breasts I would be losing, felt like everyone else’s no-brainer. “You want the nipple-sparing?” barked the nurse when I called to schedule surgery. Nipple-sparing was part of a package deal: breast tissue removal with immediate insertion of substitute silicone masses, a process perhaps deceptively labeled reconstruction.
Lorde wrote about the post-op pressure she felt to wear a falsie. A nurse scolded her for bringing down other women’s morale by flaunting her new asymmetry. “I have been to war, and still am,” she wrote.
So has every woman who has had one or both breasts amputated because of the cancer that is becoming the primary physical scourge of our time. . . .I refuse to have my scars hidden or trivialized behind lambswool or silicone gel. I refuse to hide my body simply because it might make a woman-phobic world more comfortable.[vii]
Lorde’s encounters as a one-breasted woman re-finding her personal pride, and her movement-building vision (“what would happen if an army of one-breasted women descended upon Congress and demanded that the use of carcinogenic, fat-stored hormones in beef-feed be outlawed?”[viii]) had me wondering if I could also be a proud flat-chested woman, possibly in the occasional Amy Adams-style plunging neckline and long sexy pendants circa American Hustle. The one-breasted army hadn’t yet materialized, but I would be ready to join up.
My sister didn’t choose breast reconstruction. “How will I find my people if we all reconstruct?” she said. “It’s a way to make the problem disappear.” But she also believes that the feminist choice is the choice that the woman chooses freely. When I called her to ask for the surgery nurse’s number, she knew I was considering reconstruction, and she tried hard to control her voice, to leave me the space to decide for myself.
Our mother did choose reconstruction. In the inverse of today’s assumptions on behalf of women facing breast amputation, her (male) doctor forgot to mention reconstruction as a post-surgical possibility. In the late 20th century, as a 49-year-old woman, my mother was on the verge of invisibility – notwithstanding her new romantic partner, public-facing job, and a lifetime of feeling that her breasts were too small to be alluring. The (female) surgical nurse flagged her down on her way out of the doctor’s office to make sure she knew her options. For my mother, breast reconstruction was the feminist choice.
My husband and I, who have been remarkably lucky in our lives together, went to see a plastic surgeon to check out the options. Marcel was theoretically interested in reconstruction for me. Reconstruction, the (male) plastic surgeon explained, entailed inserting implants under my pectoral muscle. They would look and feel like the real thing to others, though I wouldn’t have sensation in my spared nipples or skin. He pulled some sample breasts from a drawer. They felt smooth and unappetizingly springy, like jello made with too little water. “You could go a bit larger,” he said encouragingly. I had said nothing about wanting larger breasts. Instead, the pride I was contemplating kicked in ahead of schedule. I told him I might not choose reconstruction. “Can I ask why?” he said.
Lorde wrote: Prosthesis offers the empty comfort of ‘Nobody will know the difference.’ But it is that very difference which I wish to affirm, because I have lived it, and survived it, and wish to share that strength with other women. If we are to translate the silence surrounding breast cancer into language and action against this scourge, then the first step is that women with mastectomies must become visible to each other. For silence and invisibility go hand in hand with powerlessness.[ix]
I didn’t know how loud my voice could get, but that first step interested me more and more. I tried to explain: reconstruction would mask the truth of what would happen to my body, and the bodies of so many women, most of us women with cancer. That my cancer-surviving sister chose not to reconstruct. If I wouldn’t feel touch in these substitute breasts, who exactly would I be getting them for? “Is this some kind of a martyr complex?” asked the surgeon. Does expecting to have a happy life without visible breasts make someone into Saint Agatha? Just because most women choose to do a thing, does that mean something is wrong with those of us who don’t?
I scheduled the non-nipple-sparing. We bought a gray corduroy recliner off Craigslist. Oddly, having major surgery reminded me of having a baby – nightmare pain the body does its best to forget, sleep deprivation, loving friends coming around with food they’ve cooked for you, time slowing down. Naps. Recommended exercises not seeming to change anything. The curve of my belly more noticeable than ever. The intermittent feeling of being overwhelmed. A raw red line stretched from armpit to armpit, with a quarter-inch respite over my sternum. The sternum protects the heart. I could feel mine beating, blanketed by a hand’s width of insensible skin.
I waited to feel a huge weight lifted off my future. I wondered how I would find my people. I wondered what to wear.
“I’d do what you did,” said a long-time friend, calling from Chicago to console. “I’ve always thought of myself as a brain on a stick.” I’d never thought of myself as a brain on a stick, and it felt too late to change now. Still, my body had gone in a stick-shaped direction, and I was getting tired of pajamas.
Lorde wrote: Being one-breasted does not mean being unfashionable; it means giving some time and energy to choosing or constructing the proper clothes . . .The fact that the fashion needs of one-breasted women are not currently being met doesn’t mean that the concerted pressure of our demands cannot change that.[x]
My sister, a year ahead of me in the flat-chested department, came over to help turn out my closet. We jettisoned lots of clothes designed for someone with 34C breasts. A too-tight tank top saved from a long-ago trip to Brazil, royal blue with a gilded tree and turtles on it, finally fit. My sister shared tips on fabric textures, good and bad darts, and the usefulness of vests. Every woman knows the language of feminine beauty, the one we grow up on. Even with no breasts I could see when my body looked okay and when it looked odd, awkward, which clothes highlighted the shallow depressions south of my armpits.
I felt well enough now to take walks around the neighborhood. My sister and I traversed the local park. “I’ve been wanting to say I’m sorry,” she said one afternoon. “I had cancer, so we threw the book at me, but you didn’t, and we threw the book at you too.”
Soon after surgery, I tried out a support group for people like me. FORCE’s tag line is “improving the lives of individuals and families facing hereditary cancer.”[xi] In the meeting room at a local library, we took turns introducing ourselves. We were all women in this group, and all white; many ages; mostly straight; mostly diagnosed with BRCA1 or BRCA2 mutations. All the other women with preventive mastectomies had chosen reconstruction. The moderator, a friendly young woman with long blond hair, asked me to say why I hadn’t. I tried to explain without sounding judgmental: I didn’t want to hide what happened to me; reconstruction hadn’t saved my mother; my sister didn’t have reconstruction; reconstruction appealed less to my partner if I wouldn’t feel anything in the reconstructed zone.
“Sensation is very individual,” said the moderator, looking down. The other women were silent. Was it wrong for me to answer the question? As we put away our chairs a young woman approached me. Recently diagnosed with a BRCA mutation, she wondered about surgical options. Could we talk more?
I went back to work. The incisions slowly healed.
Mala and I met to walk at the shoreline where a reclaimed beach coughs up bricks from a long-gone factory. She congratulated me for wearing a clingy shirt to a social event. Mala had found her cancer when her daughter was a baby, and she didn’t want to spend time going through the steps of reconstruction, or risk its complications, or put plastic in her body. A busy publicist, she also made time for creative work she loved. She encouraged me to write down my thoughts.
Time passed, and the image in my head caught up with my altered body. It occurred to me that I was still a woman, still a sexual partner, still a mother of two. Feeling attractive remained a struggle, but losing my breasts had not changed my life – outside of shifting my preoccupations. After my mother died, I didn’t know if I would get breast cancer, but I expected it. Now I had stopped expecting it, and some window of possibility began to open inside me. I had bought myself time, at great personal cost. How did I really want to use it?
…[T]hese old and stereotyped patterns of response pressure us to reject the adventure and exploration of our own experiences, difficult and painful as those experiences may be.[xii]
The dominant message in our culture, so hard to disentangle from our own beliefs, says that to be attractive, to be worthy of love and success, bodies must be female or male and must conform to certain specifications. To be women, we need breasts, and to be attractive women, those breasts must be a certain size. Squeezing ourselves through that narrow channel can cause tremendous damage; at the very least, it takes a lot of energy. How much time had I wasted wondering if I looked good enough, even before a mainstay of my self-image was taken away from me? So many of us don’t have those bodies, for so many reasons, and the combined power of all of us outside that channel is nearly infinite. Or could be.
The end of the six weeks of official recovery coincided with an anniversary banquet at my husband’s workplace, so I went, self-conscious, in a basic black dress, hoping it would be harder to discern my flat torso. One of his coworkers, a warm and wacky woman I hadn’t seen for a year or so, leaned in to tell me something I couldn’t quite catch, because I couldn’t quite believe it. “You look hot!” she repeated. She didn’t know about the surgery, so it was just flirtation – and hugely affirming. I tried to figure out why. From outside my family’s rose-colored lenses of love, praise for my new body attested to a place I believed in. If others could imagine it, I might not be traveling there alone.
[i] Lorde, Audre. 1980. Penguin Books, 2020.
[ii] Smith, Tracy K., “Audre Lorde and Political Warfare,” panel discussion, Schomburg Center Literary Festival, original broadcast 9/22/2020, at 20:08. Smith also describes finding The Cancer Journals a roadmap for resisting racism. https://livestream.com/schomburgcenter/events/9329655/videos/211538471. Accessed 10/8/2020.
[iii] Friedman, Adele, “Cancer as Violence Against Women,” in 1 in 3, Women with Cancer Confront an Epidemic, ed. Judith Brady. Cleis Press, 1991.
[iv] Lorde, p. 26.
[v] Breastcancer.org, “U.S. Breast Cancer Statistics,” https://www.breastcancer.org/symptoms/understand_bc/statistics. Accessed 10/6/2020.
[vi] American Cancer Society, Facts and Figures 2020, https://www.cancer.org/content/dam/cancer-org/research/cancer-facts-and-statistics/annual-cancer-facts-and-figures/2020/cancer-facts-and-figures-2020.pdf, p. 55. Accessed 10/8/2020.
[vii] Lorde, p. 53.
[viii] Lorde, p. 9.
[ix] Lorde, p. 54.
[x] Lorde, p. 58.
[xi] https://www.facingourrisk.org/
[xii] Lorde, p. 34.
Edith Friedman 