One year ago, almost to the day, I asked my hairdresser to cut off 16 inches of my hair. It was a pre-emptive strike. A few days later I would be admitted to the oncology unit at Mount Sinai Hospital in Manhattan to undergo chemotherapy to treat leukemia. Everyone knows that chemo takes your hair. I wanted to take control of what I could before the poison did its damage. But I left the hair salon in tears, my braids in a plastic bag.
When I was given a cancer diagnosis at the age of 22, sitting in a doctor's office less than a mile from my childhood home, I remember watching my dad burying his face in his hands. My mom rubbed my back with her open palm. The room fell silent for 30 seconds, or maybe it was three minutes. Then I managed to blurt out two questions: Was I going to make it through this? My doctor told me that my leukemia was "high risk." I would need to begin treatment immediately. The second thing I asked was whether I was going to lose my hair.
As I tried to prepare for my first round of chemo, I scoured the Internet, read the pamphlets my doctor had given me and paged through the cancer books that friends and relatives had dropped off at the house. I was still catching up on the basic details of my disease, its treatment and its prognosis. I had no idea how to prepare for the havoc it would wreak on my appearance — the part of the cancer experience that the world can see.
As the Gatorade-red poison made its way into my veins, my body began to morph within the first week. Many of my physical transformations — new surgical scars, drastic weight loss, chronic mouth sores and (maybe worst of all) infertility — were invisible to the world, the silent imprint of disease. With all of these things going on, I was surprised to find myself preoccupied by one of the more temporary side effects of chemo: the impending loss of my hair.
On balance with battling my disease, worrying about hair loss seemed petty. It's only hair, I kept telling myself. It would grow back. But I couldn't shake the idea that soon, everywhere I went, baldness would be my dominant (or at least most noticeable) physical trait. When you're bald, cancer leads. Everything else follows. While much of what a cancer patient experiences is deeply personal, losing your hair is an undeniably public affair.
For the first few weeks after I lost my hair last year, I avoided going out in public. The mirror can be an onerous thing to a cancer patient, and I no longer recognized myself. Maybe I could wait it out behind the shuttered windows of my bedroom, I thought. I wanted to avoid the stares from strangers — even if most of them were just out of curiosity. I never expected cancer to make me so self-conscious.
Chemotherapy is a swift, sure stylist. Seeking inspiration and solidarity, I tried reading popular books about cancer that I found in the self-help section of the local bookstore. Many of the books sought to recast cancer as an empowering experience, even something that could be "sexy" or "cool." But I couldn't connect with that kind of upbeat gospel. Maybe it was too soon. I felt unsexy. I felt uncool.
Without my hair, my curvy hips or my full eyebrows, I felt less feminine than ever. Sometimes I thought I looked more like the local store mannequin — bald, pale and razor thin — than the real women who shopped there. I hid beneath hats and headscarves, which I'd built a collection of since getting out of the hospital. But even hats felt like "cancer clothes."
Cancer may not be a choice, but style is. I was drawn to the idea of recreating myself — a cancer makeover. Once my hair was a few inches long again, I dyed it purple and wore it as a mohawk.
I also couldn't wear any of my old pants or dresses — they were too big now — so I had to replace a lot my clothes. I started wearing a brown leather jacket that a friend had lent me. I wore long earrings that would have been obscured by the long hair I'd always had. One day I saw a pair of boots with spikes on the heels in a store window, and I bought them on the spot. Some people told me my new look was "tough" or "edgy." I didn't feel always very tough, but I liked experimenting with a tough uniform.
As my hair began to grow back, I was still drawing the stares of strangers in public. But this time people weren't staring from a distance. They were coming right up to me. But none of them mentioned cancer — people were interested in where I got my hair cut or what hair styling product I was using.
I'm just figuring it out as I go. A month before my transplant this spring, I went to the barber for a buzz cut and left with "hair tattoos." In a cavernous basement barbershop in downtown New York City that has a sign listing the dozens of languages spoken there, a stylist named Miguel buzzed my mohawk and grooved a spiral design in the one-inch layer that remained.
Today, I'm bald again. It's been 57 days since my bone marrow transplant. I'm back to wearing a summer hat or a shawl on my head. I'm still a long way from the girl with long, wavy brown hair. Sometimes I dream of having my old hair back. But it'll be a long time before that happens. For now, I've got a new hair tattoo in mind. This time, I think I'll design it myself.
Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 23-year-old writer from Saratoga Springs, N.Y. Her column, "Life, Interrupted," chronicling her experiences as a young adult with cancer, appears weekly on Well. Follow @suleikajaouad on Twitter.
