Shorn of my Femininity

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Breast cancer, I was determined, would not turn me into a frump. After all, “It’s better to look good than to feel good,” joked Billy Crystal as Fernando Lamos on Saturday Night Live.

I reigned in my mutinous cells with a co-ordinating, comfy recuperation wardrobe and coped with the “temporary” hair loss—so I was told—with wigs, scarves and beanies. Then, when my hair grew back a few months later, I’d gleefully burn them all in a bonfire.

Almost a year after my last round of chemotherapy, those wigs are getting ratty and my Lululemons look like baggy sweats. No sign of my hair anywhere. This is not normal, my doctors tell me. Hair normally returns four to six weeks after the end of chemotherapy.

“Are you bald everywhere?” my stunned oncologist asked, three months after the end of chemo.

He tried not to stare, but he was clearly perplexed.

“I AM NOT AN ANIMAL!!” I wanted to shriek.

“None,” I replied.

He continued undaunted, trying to console me with his mad-scientist knowledge of history.

“In ancient Egypt, the pharaohs couldn’t get excited unless the women were bald,” he added, oblivious to the irony of his snow-white pompadour.

In a panic, I went straight home and Googled. Within minutes, I found a group of women on the Internet who claimed that the drug, Taxotere, had left them permanently bald. I stared at the computer screen in disbelief: Taxotere was part of my chemo cocktail. For the first time in my cancer ordeal, I burst into tears. Great big shoulder-heaving, life-altering sobs.

Maybe I’m just a late bloomer. Maybe my follicles are just freaked out. “Your hair will come back,” my boyfriend consoles, kissing my melon like the Blarney Stone. Still, not one barbed-wire eyebrow has reappeared and I am getting nervous.

Now, instead of peering into the mirror to pluck out a wayward eyebrow or a “broken guitar string,” as one hairstylist dubbed my grey hair, I see a bald head and a rapidly sagging neck. On a bad day I see cancer. On a good day, I see a 100-year-old Galapagos turtle. An accidental glimpse in the mirror is enough to make me withdraw into my shell.

When people ask how I am, I know I’m supposed to smile and cheerily reply “fine”. Along with the depression and humiliation of being bald, comes the added burden of having to be chipper.

It’s hard to be honest with yourself when the well-coiffed try to console you by saying, “There are worse things than losing your hair” Or “Wear a wig.” This, as any wig wearer will attest, is like wearing a small furry animal on your head in July.

Though not as immediately dismissive, my friends are suffering from compassion fatigue. Compassion, like a statute of limitations, expired when I finished radiation. It’s time to get back to normal. As a good friend said, “I’ve got stuff too.” So I am forced to wonder out loud. How long can I continue to hope? Why does my dear dude stick around? And how do I relate to the world as a bald woman, stripped of the style that I thought defined me?

I say “thought” because there is nothing like cancer to challenge everything you had deemed important. Whoever said that cancer is a gift should be spanked. But that absurd statement does capture cancer’s one redeeming feature: an instant inability to sweat the small stuff.

So why is being bald such a big thing for a woman? As my surgeon told me, one of the first questions women about to undergo chemotherapy ask is, “Will I lose my hair?” Apparently, some women experience more depression over the prospect of losing their hair than over a cancer diagnosis—and some have even refused chemo to avoid hair loss. My health care providers did an admirable job of preparing me for the physical and psychological devastation of chemo, but we were all unprepared for my enduring baldness. No one saw this coming.

Some breast cancer “survivors” whose hair has returned are quick to thank the chemo they’re convinced kept them alive. Along with being bald and embarrassed, the follicly-endowed make me feel guilty and superficial. As a triathlon team-mate awkwardly tried to console, “No one cares if you’re bald.” She’s right in a way. We live in an increasingly narcissistic society–a weird sort of relief. That lady is too busy talking on her cell phone to care. That kid is too busy updating his Facebook page to notice.

Defining a New Sense of Self

But I do care that no one told me that chemo might leave me permanently bald. I could have been prepared. I could have made an informed choice. Not out of vanity, but out of the simple desire to make my own decisions. This is my life, not a game of Breast Cancer Barbie. Like some cosmic joke, I was stripped of my choice, my hair and my quality of life–no small indignity. Now, I’m supposed to be a good girl and keep quiet.

Sans cheveux, I am struggling to define a new sense of self. We live in a culture in which hair is the crowning glory of one’s femininity. To be a hairless woman in this society is to be neutred. “I feel like an ugly old man,” says a fellow baldie.

So I seek solace at the gym. The guys in the weight room don’t seem to care. I’m just one of the boys under my baseball cap.  Alas, I can run, but I cannot hide. Each workout begins and ends in the women’s changeroom, where every shape and size of femininity struts around with a towel on her head.

Trying to look like one of the girls, I do the same, but without lashes, my big, bare blue, eyes stare back at me with even greater intensity. I’m enough to  scare small children arriving for their swimming lessons. One thing is for sure, I don’t want their mother to have to answer the question, “Why is that lady bald?”

As I adjusted my turban one night, I stood next to a woman getting dolled up the night. I couldn’t help feeling envious as she langorously applied her mascara, like some cosmetic foreplay. It was hard not to watch, like a little girl watching mommy put on make-up.

I averted my gaze as it wandered back to my own face. I don’t see a vision of health. I see my disease staring back at me. A light bulb with eyes. “Who is this person?” I wonder. A thing? An it? An I?

“Own it,” a male friend advised. I’m trying. Really. Every day, I force myself to get out the door, an ordeal in itself. The daily what-to-wear is compounded by what to wear on my head. Every morning I put on the same heap of clothes that I left on the floor the night before. Now instead of being designed for style, my wardrobe is designed to skulk away from stolen stares.

“It’s a scar,” says my brother. Exactly. I’d planned to go through my cancer treatments like a trooper, get my hair back and go back to normal. Now when I look in the mirror, I don’t see health. I see the face of disease. I just want to get “on with it”, but it’s strangely difficult without hair.

Even a friend’s shitzu understands the humiliation of hairlessness: she hides under the couch after her seasonal shave. That little dog instinctively understands what the hair-brained do not: that to be shorn of her hair is to be shorn of femininity, her very sense of self.

I feel like the line from the Talking Heads song, “Self. How did I get here?” Our lives sometimes take us places we never imagined. “Think of what you are learning from this,” says a friend desperately searching for consoling words. I have lots of questions, but no answers. And they don’t even have the soul-plumbing satisfaction of life’s big questions.

In lieu of any answers, my fickle follicles make me realize that I have to accept the fact that this story may not have the neat ending of a pop psychology morality tale: I suffered, I overcame and I am a better person for it.

All these months later, I am wondering where to draw the time line between temporary and permanent hair loss. I swing between hope and the bald facts. As oncologist Jerome Groopman says, hope is “clear-eyed” and has no room for delusion. I’m clear-eyed all right. I just wish those eyes had some lashes.

Photo: www.kittywigs.com

Carol: The Chronicle of my Follicles

Jan 07—Diagnosed with 70% chance of mets; prescribed the harshest chemo available: 3 FEC/3 T (3 X Fluorouracil, Epirubicin and Cyclophosphamide/3 X Taxotere). Was told ALL my hair would disappear. Bought wig as pre-emptive measure

Feb 07—Hair loss from E and C of FEC chemo. This was the last time I had my real hair, eyelashes and eyebrows (and everything else, too!!)

April/May 07—Had 3 doses of Taxotere and anxiously awaited the return of my mane!

June/July 07—25 doses of radiation with a bolus, a thick pad on top of the radiation site to make me “cook” even better. Hair wasn’t sprouting at all; was told that could be due to the effects of radiation. Started taking Arimidex, which also affects hair growth—thinning and male pattern baldness is a common side effect. It has been blamed for my hair condition ever since.

August 07—Waited……

Sept 07—Had a little bit of hair and was tired of my wig—made me feel like I was still sick, so began going “topless”.

Oct 09—Still waiting. My hair has grown in a bit, but is only about one-quarter of the original. I have about half of my eyelashes and one-quarter of my eyebrows. No one was able to tell me why I didn’t have any hair and why it wasn’t growing, so I did more research. Found out about Taxotere side effects and discovered the group “Taxotears”.

The effect enduring baldness has had on me:

1. I don’t recognize myself in photos or when I see my reflection
2. I still look like I’m in treatment
3. I feel “exposed”, when I prefer to look “anonymous”
4. I would prefer to choose who knows my history rather than have it so obvious
5. I have had to resort to another wig, but it makes me feel fake. I feel better, but it’s not the real me either
6. I tried to make the best decisions to heal my body, but something else suffered in the process
7. I manage very well usually, but when I sit down and think about it (like now) it makes me cry.

Nancy: Déjà Vu

My sister, and my best friend, died in 2002 at the age of 54 after a difficult seven-year fight with breast cancer. I was my sister’s support system during her journey and I thought I knew everything about breast cancer. Later, I learned I didn’t. Little did I know that chemo would leave me permanently bald.

My sister’s battle included high-dose chemotherapy and a stem cell transplant. Unlike me, she did not receive the chemotherapy drug, Taxotere, and her hair grew back after treatment. When she found a lump on her breast, her gynecologist, who had delivered both of her girls, said it was probably an infection and to watch it for a month or two to see if it disappeared. Her last mammogram was six months prior. Then she felt a lump under her arm. The rest is history—she was Stage III ER/PR+, Her2/Neu negative at diagnosis. Her recurrence happened at five years from diagnosis. She died an ugly, painful death. Her young daughters and I may have lost her, but she lost everything.

So when I was diagnosed at the age of 58 in 2004, I told my oncologist that I had already died of breast cancer two years before. I obviously was afraid of breast cancer and checked myself daily, but I never felt a lump. My sister and I are both educated women who took care of our health (ate right, exercised, stayed thin and had our mammograms/checkups every year). But all these things didn’t make a difference for us.

I didn’t feel well for a year before I was diagnosed. I had gone to the doctor repeatedly to find out what was wrong. My left breast really hurt, but I was told, “breast cancer doesn’t hurt.” I had my annual mammogram and breast exam just ten months prior to diagnosis. I developed a cold sore, for the first time in my life, about eight months prior to diagnosis. It just wouldn’t go away and spread into the roof of my mouth. I was treated with several rounds of anti-viral drugs.

I also had a basil cell lesion along the bra line of the breast with cancer that had to be excised. I even had a breast exam two months prior to diagnosis, but my internist didn’t find anything or send me on for further examinations. So you might guess that I am angry and also a little suspicious of everything touted regarding early detection and proactive awareness.  It didn’t help my sister and it didn’t make a difference for me.  One thing that certainly needs to change in medical school is for physicians to be taught that breast cancer is not one disease and that the symptoms vary.

The final trigger was when I woke up one morning and noticed that my left nipple was inverted. That’s when I was convinced I had breast cancer. Yet even with that symptom, they were still going to wait two weeks to do a needle biopsy since the ultrasound could only detect something very small. I called my prior gynecologist and she got the ball rolling. I had a biopsy, followed by a lumpectomy and a mastectomy. I was diagnosed Stage 3C, with 11 of 11 nodes positive, ER-/PR-. HER-2/Neu positive. I was told very bluntly that I had a lot of disease with a poor prognosis. I received dose-dense chemotherapy, including four rounds of Taxotere/Herceptin and 35 rounds of radiation.

When the breast cancer spread to my neck nodes, Tykerb was added to my protocol. Again, it took over six months to second diagnosis. My only symptom was the loss of my voice due to a paralyzed vocal cord. Eventually something was detected on PET. When my hair didn’t return after treatment, a number of oncologists and dermatologists told me that they hadn’t seen this happen before. I couldn’t find anything about it on the Internet. My physicians certainly didn’t seem to care or were very empathic. None of them said that Taxotere was the likely culprit.

I know better now. My current breast cancer oncologist immediately said to me on my first visit in 2008, “Permanent hair loss sometimes happens to women who take Taxotere”.  Needless to say, I felt alone, angry and very depressed when this first happened to me. Bald men are considered sexy these days, but bald women are regarded as freaks.

I love sports and the outdoors, so not having hair really presented a huge problem. I searched and searched for an acceptable solution… and it took me over three years to find one. Unfortunately, the solution is very expensive.

I believe the drug manufacturer should compensate me and others affected by this serious side effect. I was never told this could possibly happen. Compensation is not going to give us back our own hair, but at least we can have the next best thing:  to make Sanofi-Aventis, the manufacturer of Taxotere, do the honorable thing for all of us. At this stage of my journey, I want to be a “poster child” for a breast cancer vaccine research project. I think we should be spending most of our breast cancer research money in this country on finding a cure, rather than on finding new treatments to merely prolong life. A cure is what I want for the next generation of women so they never have to experience this nightmare.

Our goal is to raise awareness of the drug company’s non-disclosure among oncologists and their patients. We want to make sure that no more women are left uninformed about this side effect.

Cynthia: The Bald Facts

RBB-B06144I always loved doing crazy things with my hair: red, black, asymmetric. Streaked. Short. Shorn. My hairstylist loved me. He’d give me a massage and a glass of wine and he’d get happy with the scissors. He could have shaved “Up Yours” on the back of my head and I would have laughed.

“After all,” I said. “It’s only hair. If I don’t like it, it’ll grow.”

That was before breast cancer. If I’d known what I know now, I would have gathered up those last scraps of hair from the salon floor like strands of gold.  As a lifelong athlete, I decided to approach treatment like training for a race—with perseverance, patience and a sense of humour. My new “training schedule”, was clearly explained to me: a partial mastectomy, six rounds of chemotherapy, plus 31 doses of radiation.

The chemo—a powerful cocktail of Taxotere, Adriamycin and Cyclophosphamide—would make me feel nauseous, my white blood cell count would plummet… and I would lose my hair. But my hair would grow back, they promised. And I would go back to normal—or at least a new normal.

Eight months after my chemo finished, I am as bald as a bean.
My doctors are perplexed. People try not to stare. I hide in the house on a sunny day.

“It’ll grow back,” console well-meaning friends. “Wear a wig,” others suggest dismissively. Finally, my oncologist—obviously a mad scientist—told me to rub garlic on my head. My sense of humour is running out.

“Do you have nose hair?” asked a curious friend.

“Let me check,” I said. Then he stared in disbelief while I, a well-mannered middle-aged woman, stuck my finger up my nose.

“No,” I said, after considerable excavation. “Nada—no ear hair, no eyelashes, no eyebrows.”

I used to want so much in life—so much stuff—but now I would settle for the simple gift of eyelashes. Hair is so much more than vanity. It’s protection. It’s warmth. It’s the very essence of femininity. My head, once a form of whimsical self-expression, is now a scar—a daily reminder of my disease.

So, love your hair… “long, straight, curly, fuzzy, snaggy, shaggy, ratty, matty,” as the musical “Hair” celebrates. “There ain’t no words
for the beauty, the splendor, the wonder of my… hair.”