When I found a lump in my right breast last year, my gynecologist shrugged it off. “You’re only 32,” she told me. Still, she sent me to have a biopsy just to be sure.
“This seems benign. You see these benign lumps in young women all the time,” a new doctor told me a week later after he’d matter-of-factly snipped off a piece of the tumor while I lay topless on a table, breast numb but ears full of the pops and snaps his tools made.
The technician who performed the mammogram immediately after my biopsy told me she didn’t see anything to be worried about.
I came home from my biopsy to a pink and purple spread of flowers from a close friend. “I hope your lump is filled with confetti!” the card read.
It wasn’t filled with confetti. I was diagnosed with breast cancer.
My oncologist couldn’t say what stage I was in or whether it had spread to my lymph nodes until I had a lumpectomy and a lymph biopsy, meaning I had to make decisions about the future of my breasts without knowing exactly how bad my cancer was.
I chose to have a double mastectomy and removed the healthy left breast along with the right breast in order to start reconstruction right away and avoid the tissue damage radiation causes, not to mention lessen my chances of the cancer coming back.
My diagnosis came on March 10, 2016. I had the surgery May 25. After the lumpectomy and mastectomy surgery, I learned that I had stage 1 breast cancer, which required a further four rounds of chemotherapy.
Sometimes cancer changes people for the better. Tom Brokaw recently wrote that his battle with cancer “has redeeming qualities.” He mentions valuing his medical team, the camaraderie and gallows humor that he shares with other cancer patients, a greater appreciation for family.
Brokaw was already a brave, affable person, one who could look Vladimir Putin in the eye for an interview or go back to work after being the intended victim of an anthrax attack. It’s no surprise that his experience with cancer is dignified.
As for me, maybe I’ve changed, but I can’t tell that I’m any better. I’m more like Mother Jones political writer Kevin Drum, who confesses, “I haven’t battled it. … There’s nothing brave about going through an unpleasant experience.” Like Drum, I mostly do what the doctor tells me and wait to get better. My cancer “battle” was napping after chemo, crying at my friends’ vacation Instagrams, feeling salty because I’m young and even the medical professionals said this wasn’t supposed to happen to me.
One of the things I’ve struggled most with is how to talk to people when I’m sick. Friends and family talk to me in awkwardly pleasant voices now, like they’re all reading off a script but not quite buying the dialogue. There are certain pat phrases that make me confused about what I’m supposed to say in response. I end up feeling like every other sick person, including Tom Brokaw, is better at having cancer better than me.
Here are a few phrases from that script that leave me scrambling for my line.
1) “You’re so brave”
I finished my final chemo in September, and about a week later I went to a backyard barbecue to drink beer and eat burgers like a normal person. The inside of my mouth still tasted like a scab from the drugs, and I wore a knit cap in spite the late summer heat. I was sweating, and I was nervous, but at least I’d left the house. I thought I was doing a good job making polite chatter with other people when an acquaintance walked up and petted my hat as if I were a dog or a small child. “You’ve been so brave,” she told me.
She’s not the only one to try to force the bravery badge at me. I don’t deserve it. What exactly am I brave for? Not dropping dead? Showing my face outside my house while bald and thin with breasts two surgeries away from reconstructed? I’m not brave to live in my body. I’m stuck in it.
To be honest, I’ve been a breast cancer coward. I opted for the mastectomy because it seemed like the choice that would mean the least number of lifetime doctor visits, the fewest number of biopsies, less radiation, less chemotherapy. I spent the summer hiding in my Brooklyn apartment because I was ashamed of my hunched, post-surgery shuffle, chemotherapy hairlessness, and steroid acne. Instead of confronting my new reality, I watched Bed-Stuy pass beneath my window and wept into my dog like a Kleenex.
Now that I am leaving the house, I’m insecure, but I’m also lonely, desperate to get back around people and play-act my old life. Maybe it does take courage to walk outside looking like a cancer patient, but that’s the last thing I want to be reminded of while I’m trying to act like I’m not a cancer patient.
2) “You look great!”
At one of my chemos, I heard a well-meaning woman say to someone getting treatment, “You’ve still got eyebrows!”
“Not really,” the woman answered, shyly, reaching up to touch her penciled brows. I felt her embarrassment, but I also understood the need to correct people, to get them to confront the fact that they’re looking at a sick body instead of mumbling compliments they don’t mean because frailty makes them uncomfortable. For me, forced normalcy is more unsettling than missing eyebrows.
“Well, they didn’t fall out all the way,” the first woman said cheerfully. Inside, I rolled my eyes in solidarity.
I lean in to my missing eyebrows and scribble on giant, ostentations Joan Crawford affairs that take 20 minutes to even out. They melt in the sun. My hats rub them off. A lot of the time I’m ashamed of the way I look, but trying to cover my illness with an inoffensive yet artificial-looking wig or just enough eyebrow pencil to pass at a glance for “normal” makes me feel like I’m trying, unconvincingly, to hide the fact that I’m not normal, not right now anyway. Somehow, it seems more honest to paint myself up with bright makeup and show off my flat chest with a crop top.
My favorite interaction through this whole process was with one of my chemo nurses who told me I looked great on a particularly horrible day.
“I look like a goblin,” I told her.
“Look around you. Everyone here looks like a goblin, but you look great besides that.”
That’s a compliment I can get behind. It acknowledged my reality while still maintaining that despite the physical changes I can’t help, I can also look good. I felt better after that, stood a little taller. I’m a hot goblin, I told myself.
3) “You’ll be fine”
When I first got diagnosed, “No one dies of breast cancer” became my personal motto, but of course, that’s not true: 40,450 women will die from breast cancer before 2016 is over. I probably won’t be one of them, but once you’re one of the 12 percent of women who get diagnosed with breast cancer in their lifetime, all bets are off. You never know.
All our breast cancer awareness and cute pink ribbons have perhaps made breast cancer a little too familiar, and people seem to think it’s cancer lite. There is no way to know who will be fine and who won’t. Telling someone with cancer she’ll be fine is just a reminder that she might not be.
4) “This will be over before you know it”
So many people I love have tried to tell me, and, I suspect, themselves, that once my hair grows back and my new boobs are built, breast cancer will become part of my past. My tumor is gone, and my chemo is over, so technically I’m cancer-free. But I don’t feel free.
Most women have breast cancer for nearly three years before they detect it, which means I probably had cancer on my 30th birthday when I sang “Midnight Train to Georgia” into a whiskey bottle for my friends on the front porch of a beach condo in the Florida Keys. I had this tumor when I flew to Louisiana two years ago to be with my mother during her own mastectomy. I had this tumor as I finished my PhD and wrote my novel and started my first non-academic job and quit that job and went back to academia. Breast cancer followed me from Florida to Philadelphia to Brooklyn. My tumor was only two years younger than my dog, and she’s middle-aged.
I had breast cancer before I knew it, and no matter what the tests say, my body will always bear the evidence of my illness. There’s a beautiful moment on Tig Notaro’s almost painfully accurate show One Mississippi where Tig finally confronts her post-mastectomy body. The audience sees it too: the stretched, pale skin ripped by fresh purple scars in place of nipples. The credits roll, and the audience doesn’t have to look anymore. But for Tig, and for me, what’s seen can never be unseen. For us, this is never over.
5) “How are you?”
This is a tough one. The absolute worst thing about getting breast cancer at 32 has been the loneliness. I don’t blame my friends for working multiple jobs, taking summer jaunts to Europe, going to concerts and all-night dance parties. We are young. This is what we’re supposed to be doing. But day after day during my treatment, I sat on my couch, body too sore to move and white cell count too low to risk infection by chancing a trip outside.
Social media and television took the place of parties and vacation. I talked to strangers on Twitter, and I liked everyone’s status updates, but all those summertime pictures of kayaks on crystalline lakes or familiar figures in bikinis windmilling legs as they threw themselves off waterfalls were enough to start tears that sometimes lasted until I finally medicated myself to sleep. A text message was an invitation to the outside world. But inevitably, they all said the same thing: “How are you?”
There was no way to explain what I was. Lonely, angry, bored, depressed. The answers would only make my friends pity me, and pity from a millennial in a kayak is almost worse than cancer. So I sent a picture of a baby chicken. “I am death goblin. My life is misery,” read the caption. “Haha. But how are you really?” they asked. Since there were no words, I sometimes just didn’t answer.
My breast cancer was caught early enough to be treated, and I have kind doctors who were willing to believe me when I told them there was a limit to how much treatment I could take. My friends flew across the country to make me toast after my mastectomy and drove me from Bed-Stuy to Manhattan in rush hour traffic to help me hobble into an Upper East Side doctor’s office and take my top off.
My partner sometimes comes home after a long day of work to find me crying over a slice of pepperoni pizza because I can’t taste anything but still want to hold it in my mouth for the comfort, and grabs a slice for himself without noting anything out of the ordinary. My middle-aged cocker spaniel seems to enjoy being used as a tissue.
All of these people (and one dog) care about me enough to hang around even when it seems like everything upsets me. There are times when I become so obsessed with my situation that I’m angry with everyone who doesn’t have to experience it firsthand. I yell sometimes; I disappear into rooms and lock the door.
Despite the fact that I can’t seem to find my illness’s redeeming qualities and perform my cancer nobly, there are still people willing to climb down into the slop of self-pity with me and nod along at my soggy rage. Those kindnesses are beautiful enough to carry me through a lot of truly awful days. Saying almost anything to a cancer patient is better than being so afraid of their illness that it’s easier to ignore them.
Unfortunately there are also people I’ve known and loved my entire life who would rather not know me anymore than risk saying the wrong thing.
“Does she know?” I’ll ask mutual friends, hoping each time for a different answer.
Oh. I should be the last one to call anyone out for lack of bravery, but I’ll take a “How are you?” over nothing any day.
Emily Alford is a writer living in Brooklyn. Her work has also appeared at BuzzFeed and Salon, and she recently completed her first novel, Bless the Girls.