“I bet you never pictured anything like this,” she says smiling. It’s not a real smile, more of an I’m-so-sorry smile, something I’ve come to recognize in the whirlwind of advanced radiological imaging and needle sticks that are my new day-to-day.
It’s New Year’s Eve, and I am wearing a pink cotton gown, open to the front. Its frayed belt hangs loosely at my side. “Any plans for tonight?” she asks, and this time we both smile, knowing full-well that I will be spending the evening on the couch icing my biopsy site. Twenty minutes on, 20 minutes off.
My husband and I speak to each other in a shorthand of book and song titles. Twenty-five years of marriage have taught us that some things don’t need to be explained. “This is the winter of our discontent,” I say as he brings me another ice pack from the freezer. In the days and weeks to come, it is the thing we say to each other all the time, regardless of the weather or the situation. It is code now for fucking cancer.
I am lost in a maze of absurd situations. To have breast cancer is to put all your modesty in a box and tuck it away in a corner of the attic. I store mine next to the bras I’ll never wear again. In February I have a double mastectomy and DIEP flap reconstruction. I am left with significantly smaller breasts and a 47 centimeter incision that runs from hip bone to hip bone where the surgeons excised fat, tissue and skin, ripping my body apart and then sewing it back together again during a 12-hour surgery. Not even my nipples could be saved.
My badass, Armani suit-wearing plastic surgeon assures me that no one will ever know my breasts aren’t real. “Over time, the transplanted tissue will soften and when you’ve healed, we can make new nipples,” he says, pointing to the circles of skin harvested from my stomach and stitched into place where my nipples used to be. I will have faux-real three-dimensional tattooed breast nipples sitting smart and perky on top of my faux-real breasts. Knowing this blows my mind. I simply can’t imagine the weirdness and the wonder of such a thing. My sister wants to know if I’m planning to go to Florida to get my tattoos. “I’ve heard there’s a guy there who is amazing,” she says.
My 13-year-old son has never heard of a double mastectomy. “But how does it get rid of the cancer?” he wants to know. My voice catches somewhere between choking sobs and hysterical laughter as I explain how the doctors cut away my breast tissue. “Are you going to turn into a boy?” he asks, eyes wide. He turns away from me as I explain the basics of reconstruction. Something about the conversation unsettles the balance between mother and son, nurturer and nurtured. We are both afraid of the same thing: Neither one of us wants me to die. Later, holding him in my arms, I don’t say what I am thinking: This truly is the winter of our discontent.
Every day another package arrives in the mail. Fruit baskets and muffins, books and DVDs, soft fleece blankets and zip-front hoodies. I am stunned by the boxes and cards stacked up on the dining room table. While meant to comfort me, these gifts are reminders of missed opportunities, moments when I failed to reach out in a similar way, to offer comfort or support to family and friends in need. I tell my husband I’m not a good person. I’ve let people down. Maybe this is the reason I have cancer. To atone. He points to the table and says, “You must be doing something right.”
My 74-year-old mother gets on a plane in California and flies to New York for the first time in almost 10 years to take care of me. This, too, is absurd, though I don’t realize it at the time. She comes east with a suitcase full of cotton sweaters to nurse me through one of the coldest winters I can remember. Snow, ice and six post-operative surgical drains whittle our world down to the recliner in my living room and the exam table in my doctor’s office. I wrap her in my cashmere sweaters and a down parka, wondering which one of us will be the first to slip on a patch of ice and break something.
It is the six post-op drains that undo me. The “milking” of the tubes, the measuring of the fluids seeping out of my incisions into the drain bulbs—it’s just too much. The drain belt that I wear, the one given to me by the social worker at my surgeon’s office, the one that was sewn by a bevy of volunteer breast cancer survivors, is nothing more than six bright pink pouches on an elastic band. The design is simple, but it does the job. It holds the drains in place, like a ballast around my waist, anchoring my recovery to this single moment in time. It is a daily reminder that I need help for the simplest tasks. It takes a village to get me out of bed, bathed and dressed. My movements are shallow and small, there is almost nothing I can do for myself.
I am obsessed with having the drains removed, knowing the only way I can go forward is unencumbered. Two weeks after my 12-hour surgery, 10 days after coming home from the hospital, I sit on the edge of an exam table, the pink cotton gown I am asked to wear open to the front. My husband holds my hand and rubs my back, a tight smile on his face. The nurse instructs me to take a deep breath and cough as she pulls each impossibly long strand of plastic tubing out of my body. “Some patients ask to keep them,” she tells me, dropping each drain into a red hazardous waste bag. “I can’t imagine why.” At home, my son wraps his thin arms loosely around my shoulders and sobs into my neck. I celebrate by taking a hot shower—entirely by myself.
In March I find out I’ve won the cancer lottery. No radiation. No chemo. And just like that, as abruptly as my run in with cancer started, it is over. My family calls me a survivor, but the title is ill-fitting. I don’t feel like I’ve survived. It’s too sudden, too soon. I don’t trust that the cancer is gone.
The snow and ice melt. There are patches of green in the yard, but the days still carry a chill. Like me, the magnolias and the cherry blossoms struggle to bloom. My oncologist wants to go after rogue cancer cells with a five- to ten-year course of anti-hormone pharmaceuticals. “You’re too young to sit back and do nothing,” she says. “From here on out, it’s all about preventive care.” But the drug that “most women tolerate very well” wreaks havoc on my system. Within a matter of days, my arms and legs are covered in a rapidly spreading rash.
I try not to think about microscopic cancer cells weaving shadowy webs in between otherwise healthy tissue. Sitting on the edge of the exam table, I wrap myself in my arms as I pull the pink cotton gown closed across my chest. My oncologist is speaking, but her words fall between us. I don’t try to catch them.
I watch her Google images of skin rashes on her smart phone. “I’ve never seen anyone react like this,” she says. She holds her phone next to my leg, scrolling quickly, looking for a match. The absurdity of this does not escape me. For the first time in months, I am without a plan for moving forward. I close my eyes and remember something else the nurse told me after my New Year’s Eve biopsy. “Come spring, you’ll be a whole new person.”
I tell my husband we need a different title for our story, but nothing else seems to fit. Winter shadows us into the new season. After a while, I stop using code and start telling it like it is: fucking cancer. East of Eden, the winter of our discontent rages on.