Why coping with hair loss from chemotherapy can be the toughest part of treatment

Losing your hair, lashes and brows tells the world you’ve got cancer, says New York author Beth Leibson

Coping with hair loss from chemotherapy wasn’t in my life plan. My hair was my personal identifier: I’m the short woman with glasses and curly brown hair. That’s how I always described myself, occasionally adding the colour of my shirt or coat. People always found me when we were meeting for the first time, so I guess the description worked.


People always knew I was Jewish, too, which I always ascribed to my hair, though come to think of it, it could have been my long nose, also a traditional Jewish attribute. Everyone assumed I was sister to my cousin, just because we had similar long, curly brown hair. My hair was my ethnicity, my family, my identity – and my best feature esthetically. I’ve never considered myself particularly attractive, but I’ve always loved my hair.


Then I had cancer. And chemotherapy. And that’s when I found myself coping with hair loss.  I lost every last wisp on my head and everywhere else, all but one oh-so-solitary eyelash. After all, chemotherapy is designed to go after fast-growing cells and, alas, both cancer cells and hair follicles fall into that category.


The consolation prize was the notion of ‘chemo curl’. Women who experience hair loss from chemotherapy often say their previously straight hair came back curly.  So, you never know, maybe my hair would come back even curlier, maybe even thicker? How exciting! I tried to focus on the possibilities of an even-curlier future and turn my eyes (and mind) away from the present baldness.


My hair surprised me after chemotherapy

I finished chemo and my hair started to grow back. At first I looked like I’d just left the military, then it grew in more and more. For months, I was loathe to cut or even trim it. It was my hair, after all. Something occurring naturally on my head. It was all I could do to keep from tugging on it like those Chrissy dolls from way back when.


My hair grew back straighter, though, not curlier. But maybe, I hoped, that was because it was growing longer than before. Surely the weight of the longer tresses was pulling it taut, making it straight. Besides, this was my ‘first hair,’ my post-chemo baby hair. Once this grew out and got cut off, I was told, I’d have my ‘real’ permanent hair.


Of course, trying to predict what that might be was a risky undertaking. What if it got, God forbid, even straighter? I’d be wondering at mirrors for the rest of my life. My solution: keep away from hair salons. If I don’t go near one, my hair won’t change.


But, you know, ‘chemo curl’ is somewhat of a misnomer. What it really means is that after you’ve coped with hair loss, the hair that grows back after chemotherapy is typically different than the hair you had before. Straight becomes curly and – gasp – sometimes, just sometimes – curly hair comes in straight.


For altogether too long, I hid my silky locks by putting them up in a bun or pulling them back into a ponytail.

Finally, I made an appointment for a haircut. I walked into the salon, got my hair washed, sat in the chair and took off my glasses. I answered the awkward question: How long has it been since you had your hair cut? And heard the inevitable warning: the ends of your hair are dead; I’m going to have to cut off two or three inches.


Ok. Despite the trauma of coping with hair loss from chemotherapy, and even though I now gloried in having hair again, perhaps I could help my curls if I took a little weight out of this new hair. Perhaps curls that were hibernating right now would emerge. Hope springs eternal – and maybe the curls would, too. “What do you think?” she said, a half hour later. I put my glasses on and looked in the mirror.


“Oh.” Pause. “I mean, it looks great, you did a wonderful job. I really like the bangs.” I was totally befuddled. I looked down at the rest of my body; had it transformed as well – was I taller and skinnier and maybe wearing a sapphire necklace? Oh well, a girl can dream.


Coping with hair growth, actually, after chemotherapy

My body hadn’t changed, but on my head there was some sort of alien transformation. My hair was straight, smooth, silky, hanging straight down. No bounce, not even much body. I looked down at my hands, then back into the mirror. Hair still straight. Wash, rinse, repeat.


So this wasn’t just about coping with hair loss from chemotherapy. And it wasn’t just about having hair again. All of a sudden, I don’t look Jewish, I don’t look like my cousin, I don’t even look like me. I mean, the person in the mirror is kind of cute – and I do like those bangs – but who is she?


I don’t think I said a word as I whipped out my credit card and signed the receipt. As I walked home, that woman kept popping in front of my face whenever I peeked in a reflective store window. I stopped for a quick errand, to pick up some toothpaste. But drugstores also sell mirrors. Out of the corner of my eye, I saw that straight-haired lady again. Was she stalking me?


Straight hair is so direct, so clear. Honest and forthright, just like the word itself. We talk about staying on the straight and narrow, playing the straight man or woman, going straight to bed, thinking straight, even setting the record straight. Straight is so law-abiding and, well, straight-laced; it doesn’t do drugs, alcohol, inappropriate sex, or criminal activity.


The next morning I woke up, put my glasses on, and there she was, Ms. Straight Hair. But she had my face shape, the bags under my eyes, the forehead wrinkles. I looked away, then looked back. Still there, all bags and wrinkles.


The only bit of curl left in my hair now peeks out of those bangs on damp or humid days. Damned if I know what to do about it. Do I want to straighten it – how? – or do I want to encourage it, hoping those few locks will do a PR job on their compatriots and encourage more curls?


As time goes on, though, I find it’s sort of growing on me. It’s a way of banishing the horror of losing my hair to chemotherapy. A new look for a new life. Besides, I do like those bangs.


Beth Leibson lives and writes in New York City. She is the author of I’m Too Young to Have Breast Cancer! (2004) and The Cancer Survivor Handbook (2014).