What It's Really Like to Get a Double Mastectomy as a Queer Person

Courtesy of Rae Tutera
Courtesy of Rae Tutera

Rae Angelo Tutera is an LGBTQ clothier and advocate. Rae's tailoring and advocacy are currently featured in a documentary titled Suited, which can be seen on HBO and was produced by A Casual Romance (the company Lena Dunham and Jenni Konner are behind). Rae's also one of the owners of general store Willoughby General in Brooklyn.

At 25, I meditated on the possibility that I might wear a binder for the rest of my life. A binder is an undergarment that compresses the chest to make it look flat. I had a lot of tissue to compress and when I wore my binder, I was always short of breath. Jillian Weiss, the attorney and trans woman who was recently appointed Executive Director of the Transgender Legal Defense and Education Fund, said something that has stayed with me. In Suited, a documentary in which we're both featured as subjects, she told me that after she decided to transition, she felt like she was "breathing the free air for the first time."

While I acknowledge that I was short of breath, binding also gave me the sense that I was breathing the free air for the first time. It helped me feel present. To give you some context for that, I was assigned female at birth and had an innate sense of how to navigate my masculinity throughout childhood — until puberty. For me, like every other person who's survived puberty, it was a period of anxiety and bewilderment. I didn't know how to situate myself in my changing body, which will sound familiar to anyone who allows themselves to recall this time in their lives.

I went looking for that other version of myself two years later in a hospital in Pennsylvania.

But something else happened too: my gender (not to mention my sexuality — but that's a subject for another essay) was expanding beyond the limits of the traditional gender binary, and I didn't have the language or tools to process — or even scrutinize — that reality. This marked the beginning of a long stretch of time where I muted myself and hid inside myself as much as possible, and without realizing it, I took up the practice of not being present.

When I got to my 20s, I ached to be more present. I sensed there was another version of myself — one that could demonstrate the affection I felt, one that could go for a run were I ever disciplined enough to exercise, one that, in general, was not only more present in the various contexts of my life, but more participatory.

Courtesy of Rae Tutera

I went looking for that other version of myself two years later in a hospital in Pennsylvania in April, just after my 27th birthday. There, I found myself counting backwards from 10 (the nurses/doctors/anesthesiologist really do have you do that!) while my surgeon cranked the Rolling Stones song "Gimme Shelter" and winked at me through her surgical eyewear. I was about to sleep through what's called a subcutaneous double mastectomy while my mom and then-girlfriend lived through it together in the hospital cafeteria.

The three of us drove in from New York the night before and were nervous out of our minds. The weird, desolate landscape in small-town Pennsylvania did not soothe us. I found a German restaurant on my iPhone, so we pulled ourselves together and went out for schnitzel. My girlfriend ordered The Best of the Wurst and I broke the rules and ordered a beer (something you're instructed not to do before surgery). The next morning we got up, and I took a pre-op anti-bacterial shower while cultivating an I'm-going-to-be-fine attitude.

Fact is, I hadn't started testosterone and didn't have plans to start.

Before Dr. McGinn could operate on me, I had to say, "My name is Rachel Tutera (my legal name then, which I've since changed to Rae), and I am here to have a double mastectomy" — even though I was there to have what she and I agreed should be called "top surgery." Top surgery is a version of a mastectomy that some queer, trans, or otherwise-identified folks choose to have where breast tissue is removed and then the chest is reconstructed to make it flat or more masculine.

I chose Dr. McGinn as my surgeon because she runs a trans health clinic in aptly-named New Hope, and she struck me as both competent and compassionate. She's not just a board-certified surgeon but also a trans woman, someone with whom I identify. At my consultation, she joked to her assistant that surgery would be so easy to do on my body that the two of them would have the energy and time afterward to go out for BLTs at a diner. She might say this to all her patients, but nonetheless, the joke put me entirely at ease. I knew I'd found my people.

Courtesy of Rae Tutera

Dr. McGinn performs her patients' operations in a standard Pennsylvania hospital, which has a pretty different vibe from her clinic. Comparatively, it's a queer utopia both staffed by and patronized by queer and trans folks. There was one nurse who was a cross between Julia Child and that delightful bumbling midwife from Call the Midwife — except that she was all bumble and no delight. She asked me while stuttering and blushing, "So Rachel, have you started testosterone yet?" Some part of me knew she was being as open-minded as she knew how, and another part of me knew I had inspired some crisis in her. She was sweating.

Fact is, I hadn't started testosterone and didn't have plans to start. I wondered if maybe she never met someone like me, who wasn't on hormones and wasn't male-identified, but who had plenty in common with folks who were — including having top surgery, a gender-confirmation surgery generally performed on FTM (female-to-male) patients. Meanwhile, back when I was at Dr. McGinn's office for my consultation, she asked me what my gender identity was while holding her medical tablet. I wasn't able to think of a single word to describe it, and asked, "Is there a drop-down list to choose from?" And we laughed, understanding that gender can be fluid enough to be unidentifiable.

I considered top surgery not to be family-friendly information because I had no plans to transition afterward.

I was thankful my family wasn't there when I wept while getting my first IV, wept while being given a pregnancy test as I stood connected to that IV, then wept more while I was asked that if my lungs collapsed, did they have my permission to save my life? Despite all that, this was an out-patient procedure, and within hours, I was awake. And while I was not at all lucid, I was still in decent shape. My eyelashes felt freakishly long and tangled, and I was convinced my eyes were locked shut. I was also convinced that I was back in New York at my favorite coffee shop (hey, Everyman Espresso!). So when a nurse began touching me I responded by saying, "You're a barista. Why are you touching me?"

Courtesy of Rae Tutera

I remember apologizing for my manners. I remember Dr. McGinn standing over me and asking if I wanted her to get my fiancée, Mimi. Those words sounded very nice side by side, but we weren't engaged. I replied, romantically from Mars, "Yes, I would like to see my see my fiancée Mimi."

A few days later, I was home and propped up in bed. I was so stoned that I couldn't focus on anything, not even TV (I would literally go cross-eyed) or Martha Stewart Living (thank you to my dear friend HBW for reading Martha's whole calendar out loud to me, which at the time felt as profound as Rilke). I routinely cried because I couldn't get myself out of bed to go to the bathroom, and because I spent so much time in bed that my butt was almost always asleep. Worse than all of that, I couldn't even take a shower. The drains dangling at my sides were collecting fluid from my chest into what looked like — warning, this may gross you out — two little grenades of blood.

Mimi (my poor Mimi) was tending to all of these things. On one of my better days, I called her to the bed and shared some of my painkiller-induced wisdom: "Honey, I know why Dr. McGinn called you my fiancée Mimi. She didn't say fiancée, she said Beyoncé. I must have misunderstood when she asked, 'Would you like to see your Beyonce Mimi?'"

Even though I had literally spent years fantasizing about having a flat chest, it suddenly seemed abrupt that I now had one.

When I went back to New Hope to have my drains removed, my mom drove and my grandmother (who raised me) came along for the ride. In truth, these two women combined are my mom. I hadn't told my grandmother that I was having top surgery because it all seemed like TMI for someone who is 90 years old — even if she loves me "more than I'll ever know."

I told her I was having a reduction, which I guess was a kind of a euphemism. In fact, it was what I originally told my mom before I decided to be more transparent with her. For the most part, though, I considered top surgery not to be family-friendly information because I had no plans to transition afterward or to become the kind of gender warrior who would confront people with my complex body and identity by being shirtless in public. Whether God laughs at our plans or not, I don't know, but I know we often laugh at them ourselves.

While I was about to see my chest for the first time, my mom and grandma were just a few yards away at a diner having breakfast (I had insisted they do that). In Dr. McGinn's consultation room, when I saw my chest, I didn't really see it. I was hunched over and convinced they had made the skin on my chest too tight for me to ever stand up straight again. Similar to before I had surgery, I couldn't make eye contact with my own body.

Even though I had literally spent years fantasizing about having a flat chest, it suddenly seemed abrupt that I now had one. I can't say that I was happy or unhappy with the results; I think I was just stunned. I felt like I was in a future I so desperately wanted to exist, but wasn't really convinced ever would exist.

Courtesy of Rae Tutera

I put my oversized Dickies hoodie back on — I had been heavily bandaged and needed the space not only for the bandages but the drains too — and crossed the path to the diner. I was hyper-aware of how flat-chested I felt and tried to create slack on my hoodie so my grandma wouldn't notice. What I didn't know was that while she was eating eggs, she paused to ask my mom, "She had them removed right?"

In the car, my grandmother fell asleep in the back seat and my mom told me about that. My Gram knew what I'd done. I woke her to tell her I loved her and we held hands until I had to put my head between my knees (I had taken half a painkiller to make it through the bumpy ride back to New York).

While she was eating eggs, she paused to ask my mom, "She had them removed right?"

The truth is, even though I'd practiced hiding inside myself, the woman who raised me could still see me. I'm not gender-enlightened, but I am what I call "gender-chill": I allow my gender to expand to include elements of masculinity and femininity and whatever else feels right. And while my grandmother probably wouldn't understand either of the gender-related phrases I just made up, she can still see that the fluidity of my gender exists, no matter how many years I spent muting myself.

The few weeks following that day I returned home can be summarized with the following words: agoraphobia, muscle atrophy, smoothies, gauze, panic, ace bandages, more gauze, antibacterial ointment, stool softeners, protection candles, more smoothies, me remembering the words to many of the Catholic prayers I thought I'd forgotten, and a feeling that I had become a burden to girlfriend, myself, and society (this is how real painkiller- and recovery-induced depression is).

Courtesy of Rae Tutera

One afternoon, I tried to take a walk and felt like my beloved grandpa — I held all the banisters and railings on my way out of the house, and was unbelievably deliberate and gentle with myself. I walked about halfway down our block before becoming winded and worried that if I went any further, I wouldn't be able to make it all the way back.

By May, I was feeling sturdier, emotionally and physically. My grandmother called me one afternoon to ask, "Rae, did you hear Angelina Jolie had the same surgery as you?" While Angelina Jolie and I, needless to say, have different experiences and genders, my grandma was right in some sense: we had both had "electively" done something that improved the quality of our lives.

I'm not gender-enlightened, but I am what I call "gender-chill."

A year after having surgery, I had a dream that I wasn't wearing a shirt outdoors. I told Mimi, who by that point was my fiancée Mimi, about the dream, and joked, "It must have been a dream about 300 years in the future." I went in search of the more present, participatory version of myself and something I learned is this: once I found it, I had to inhabit it. Fewer than 298 years into the future than I projected, I often find myself outdoors without a shirt on as much as I'm inclined.

Courtesy of Rae Tutera