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

9 thoughts on “Shorn of my Femininity

  1. Wow. This is beautiful and captures all the feelings I’ve had – the burden of being chipper, being placated by the “well-coiffed,” the compassion fatigue from friends. I especially identify with the “cosmic joke” of just coming to terms with my beauty. It took me 40 years to become comfortable in my skin and now I’m starting all over again. I feel all of that and yet I’m not even facing half the battle that you are.

    I’m so sorry this has happened to you and to others as well. You have expressed the issues so eloquently in this piece. I beleive naming it and saying it out loud are the first steps to finding some kind of peace with it. I hope that somehow you find that peace. I hope we all do.

    By the way – who wrote this? I don’t know who you are.

    Sherri Jo

  2. I was the first patient that my oncologist had whose hair did not grow back after chemotherapy. That was nine years ago. I had a very aggressive cancer with 19 positive lymph nodes, but no sign of spread to other parts of the body. Since we were still technically dealing with localized disease, we planned an aggressive treatment that included taxotere. I think it worked because I have no sign of cancer–my ER negative and H2Neu positive cancer has not returned, and my health is excellent. I do miss my hair but it’s loss is more than compensated by my three grandchildren born since my diagnosis whose births I would certainly have missed without the chemotherapy. My oncologist now has over 20 patients whose hair has not returned after taxotere, and she now warns patients about the possibility. All of us had aggressive tumors and all are doing well. For those of you who have experienced permanent hair loss, I hope that you have the same positive results that I have had. It’s really not such a bad trade-off: my hair for my life.

  3. Elizabeth, i found your letter very interesting. As you know that all these other 20 ladies have had aggressive tumors, i assume you know them?, maybe you could tell them about this site. It might help them a great deal.
    I hadnt realised that they tested for HER2 that long ago! When did they start doing this in the USA? i think in the UK it was about 2005 but i could be wrong. America seem so far infront were BC is concerned.
    However i dont agree with your last sentence. I dont look at it as a trade off – my hair or my life at all. There are many other good drugs to choose from ie Taxol that doesnt carry the risk of PSA (or a smaller risk).
    You have done fantastic, especially after having 19 pos nodes – i hope you continue to stay in great health.

  4. Elizabeth,

    This is not a simple my-hair-or-my life decision. It’s about a patient’s right to make fully informed decisions. And it’s about medical ethics. Your oncologist is required to report any adverse side effects to the FDA or the appropriate regulatory body in your country. Is she?

  5. Hi Elizabeth,
    It’s been over 2 years since you wrote your piece titled Shorn of My Femininity and it is eloquently expressed. I just stepped into this realm myself. Like you were in the beginning, I’m still holding out hope that I’m a late bloomer. Everyone tells me it’ll grow; just be patient. Of course, these are women who have never walked through an oncology department, never sat through 4 hours of infusions and have never been bald at least not since they were 6 months old. How can they know the intense conspicuousness we feel, the desperate longing and the faith-shattering hurt that comes from feeling lied to. It is very good to hear in your voice—as the years have passed—that you have come to a measure of acceptance. That gives me hope, that although I might not be able to change the way my hair looks, I will be able to re-style my perspective. And right now that’s a good thing for me to keep in mind.
    Thanks for your words,
    Cathy

  6. Hello All,

    I was diagnosed 6 years ago with bilateral bc, ER+, 14 positive of 20 lymph nodes removed, double mastectomy, ACT chemo, radiation, and am just finishing 5 years of aromasin therapy.

    Pre-cancer I had dark brown, medium thickness curly hair and now I have salt n pepper, straight, very fine & sparse peach fuzz with male pattern baldness. Sigh. My oncologist has never before had a patient whose hair hasn’t regrown. I suffer from intense hot flashes and sweating, and wearing wigs raises my body temp. and triggers them, so wigs are not always a good option for me. I’m hoping that when I stop the aromasin, my hot flashes will subside and wigs will be less difficult….or even unnecessary if my hair regrowth improves without the drug.

    My husband is wonderfully supportive and I’m absolutely comfortable as I am, without hair (I shave the untidy, uneven bits) at home and out in the world. And I live in Los Angeles between Beverly Hills and Hollywood where there’s a relentless culture of youth and beauty that can be overwhelmingly intimidating!

    My loved ones and I unequivocally adopted the attitude that it’s a small thing to have sacrificed my hair in exchange for my life. However, I also understand this is a “right to know” issue. Ideally, my doctor would have informed me of the risk of permanent hair loss (had he himself known) and as the body of evidence and studies grows, patients must be so advised. Bottom line, it would not have changed our decision to go forward with whatever gave me the best prognosis, and that was A-C-Taxotere.

    I root for every cancer patient in their struggle for wellness and hair regrowth. I hope they are informed before undergoing taxotere therapy and given the opportunity to use a cool cap during infusions. I do wish I’d known this beforehand and I certainly would have worn a cool cap.

    Cheers & wishes for NED to all!

    Kathryn DeLongchamp

  7. Kathryn,

    Thanks for sharing your story. For me, hair is about so much more than about mere vanity. It’s also about protection. I live in a cold climate and it’s freezing without hair! I am slowly but surely coping with the shock of being permanently bald, but I miss the protective aspects of my eyelashes and nose hair more than anything. I’m constantly getting crap in my eyes and my nose literally runs like a faucet in winter. And the loss of cilia in my ears has affected my hearing.

    This is a quality of life issue for so-called survivors. I am not vain or frivolous enough to value my hair more than my life, but it certainly would have spared me a lot of pain and suffering to know that permanent hair loss was a risk. It was the deception that was the greater injury for me. As you know, the whole culture of breast cancer is obsessed with hair, with its constant exhortations that hair ALWAYS comes back. It was a betrayal of my trust–and downright infantilizing–to learn that permanent alopecia is too superficial a risk to tell patients about. Apparently, we’re supposed to be good girls and take our meds. No questions asked.

    It’s important to know the game plan before you start treatment. It’s like running a marathon: you train, study the course and mentally prepare yourself… and then, when you cross the finish line, they say, “We didn’t tell you: we’ve added another 10 miles to the route… and you’ll have to get there on your own.” If had known that permanent alopecia might be a long-term side effect of chemo, I probably would have dismissed the possibility as being so slim. But when it did happen, I would have been less blind-sided and more resilient.

    It’s a slippery slope when someone decides what’s best for you when you’re at your most vulnerable. One of my friends developed a 1-in-5,000 chance of developing Acute Myeloid Leukemia, a secondary cancer caused by her breast cancer chemotherapy. But then, I’m not sure how many are told about that either.

  8. Hello Kathryn
    Yes,lets all wish for continued NED and thank you for taking the time to comment on this site.
    Sanofi Aventis already knew about this problem and it was in print mid 2005 so at the end of the day if the oncs cant be bothered to read the ongoing ASE with drugs they are using on their patients what hope do we have! Either that or they decide not to inform us because of their god like status. Too late for us anyhow.
    I have been off my AI for over 2 years now and have had a little change but nothing drastic enough to be able to go wigless so totally irrelevent. My flushes stopped and feel totally back to normal – untill i look in the mirror then i feel deseased ! so try not to look at my reflection if i can help it.
    So, lets raise our wigs to NED !

  9. Your story of persistent alopecia after Taxotere treatment has moved me, “Kojackie,” because you so eloquently describe feelings that I have lived with ever since I also experienced persistent alopecia after Taxotere treatment. I had no idea that I was joining the ranks of a growing number of people who are stuck in the same boat.

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