Baldly Forward

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I’d planned to mark my 50th birthday with six-pack abs and Popeye biceps. At 49, I was right on target. At 49 ½, I was diagnosed with breast cancer. All that running, yoga and those “grass drinks”, as my boyfriend calls them, didn’t stave off old age or disease. But chemotherapy did stave off my hair.

A visit to the dermatologist on the eve of my 50th birthday made it official: I have Alopecia Universalis, a little-known side effect of chemotherapy. I didn’t need a dermatologist to tell me what I already know: I’m totally bald. No nose hair. No ear hair. No nothing.

But the official diagnosis has given me an unexpected birthday gift: clarity. Now, I no longer have to listen to wishful reassurances from friends and family that my hair will come back. As a middle-aged lady with toys, I don’t need any more encouragement to              be delusional.

“True hope has no room for delusion,” wrote oncologist Jeremy Groopman. “Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to         surmount them.”

The bald truth simply means I can start to move forward. For once, my doubt and sarcasm weren’t just glib defense mechanisms. They were spot on, the perfect ballast for all the pleas to think positive. Still, I want to remain hopeful that my fickle follicles could suddenly spring to life—which can mysteriously happen with alopecia—but for the ever-present now, I need to learn how to live as a bald lady.

One thing has become painfully clear since my surgeon first rang the bald alarm three months after my chemo ended: I’m on my own on this. There are no role models for ladies who’ve been made bald by chemotherapy. If there is one, odds are she’s hiding at home under a baseball cap, the universal coping mechanism of the newly bald.

My doctors certainly aren’t forthcoming with any advice. My bald head has become the elephant in the examining room, provoking the clinical emoticon of reactions: Stares. Silence. Fear. It’s as if they can hear me thinking, “If a quick Google could connect the dots between chemo and baldness, how come you couldn’t?”

One dermatologist wrote me a prescription for Monxodil, which I Googled for side effects. In addition to putting hair on your head, Monoxodil can also sprout it on your face. So I tore up the prescription. The last thing I need is to be a bald, bearded lady.

After that lovely finding, I decided to just say “no” to drugs. “Every solution has side effects,” advised another dermatologist. Since I’ve already drawn the short straw on chemo side effects (see: bald, fat, osteoporotic), I decide to forgo the snake oil cures. They all work for a while, but hair falls out as soon as you stop using them. I’d rather deal with the sure thing of being bald, than with the emotional rollercoaster of potions and promises.

The clarity of an official diagnosis is a giant step towards acceptance—although it’s not a straight line through Elisabeth Kübler-Ross’s five stages of grief. It’s more like one of my college room-mate’s perambulating stories, prompting her brother to quip “Lisa goes from A to B via Z.”

So I go from humour to hysteria to hiding, then back to anger via wailing and gnashing of teeth. The spectre of being permanently bald is a psychic assault, making me swing between outrage at those who “did this to me” and a rocky resignation that bald is the  new 50.

A good day—when I actually screw up the courage to go out—is punctuated by another day of hiding in the house. Mostly, I prefer to throw myself into work and keep my mind off my melon. Easy to do, since my home is my office and I don’t have to deal with wardrobe anxiety or curious co-workers.

One of the few places I dare go is the gym, a favourite place to clear my head. I plop a kerchief on my head, plug in my iPod and pump it up. In the weight room, I am just another parallel universe working out with plugs in my ears.

Once, as I stopped for water, a tiny, well-coiffed woman shattered my Shuffle when she whispered, “I’m wearing a wig”—code phrase for cancer.

“I think you’re very brave,” she said. This from a woman who had just survived the odds against ovarian cancer.

“It’s nothing to do with courage,” I replied. “I’m just too lazy to fix myself up.”

“I couldn’t go out without my wig and make-up,” she added. “Though the wig makes my head a little sweaty on the treadmill.”

“I just don’t know what to do with that stuff,” I admitted. “I’ll take a bald head over a  sweaty wig.”

“You’ll learn,” she said encouragingly, and like a big sister, gave me tips for drawing on eyebrows and creating the illusion of lashes. The mere suggestion that I don’t have to accept looking like an ugly old turtle was heartening… yet daunting. It’s a fine line between looking great and looking like a drag queen.

I’ve always been a jock/fashionista who loves sports and clothes. Two years later, I am still miffed at being passed over—by a guy—for my triathlon team’s annual “Best Dressed Cyclist” award.

When I worked at a fashion magazine, I possessed superhuman abilities to find the perfect heel under stress. But me and my oily T-zone would exit stage left when the hair and make-up people rolled in with their obsessive powdering and primping.

Oddly Empowering

So here I am, all these years later—a make-up klutz desperately seeking tips on how to draw on eyebrows and glue on false eyelashes. I went for a “Baldie Make-over” at a local salon, but it was hard to see how I looked through the glops of glue on my fake eyelashes. I couldn’t wait to get home to whip off my wig and peel off my lashes. I was back under that baseball cap in no time.

Now, my sports aren’t just a source of solace, they’re a source of headgear: cycling helmets, ski toques, bathing caps. Throw in some shades and goggles and they’re the great equalizer.

The locker room after swim practice is a noisy place—kind of like a big boisterous family, where I feel comfortable enough to walk around “topless”.

As I stood in front off the mirror, trying to erase the crop circles my goggles dig into my forehead, I noticed one of my team-mates, stealing concerned glances.

“How are you?” she asked. She’s good with the clock—in and out of the pool—so I asked, “How much time do you have?”

Normally, I don’t stop to chat—my bald head makes healthy people nervous—but that night I told her the whole big hairy deal, fighting the urge to cover my head from the startled gaze of passers-by.

Standing there, boldly bald, was oddly empowering—and a bit of a turning point in my “recovery.” It made me realize that I am not a TOTAL freak: our superficial society constantly encourages us all to dress up our problems, rather than to deal with them, uh, head on.

So I wonder… Why can’t I just strut around with my bald head on parade? Am I hiding from me? Or trying to save others from embarrassment? Should I play Princess Alopecia and learn to wield an eyebrow pencil? Or buy a jumpsuit and let the force be with me? Cancer comes with lots of questions, but very few answers.

One thing is for sure: I’m so obsessed with my reluctant follicles that I don’t have time to worry about a recurrence of cancer, a bit of strange birthday gift in itself.

Alas, all this pontificating is making my head sweat. So I venture out for a birthday fête with a friend, the same one who shaved my head, pre-chemo, to prevent that plucked chicken look. I’ll never forget that night as he swept my hair off his kitchen floor, the last time I would ever see it.

He’s the kind of guy who’d rather see his wine glass as half full, than half empty, so I can always count on him for a boozy reality check.

“Losing your hair at 50 is just practice for losing other body parts,” he quipped. “Teeth at 70. Your mind at 80.”

He’s right. Back at the gym—I have to work off that dinner—I meet a slightly older woman in the weight room. She’s had some work done, but she looks good: She’s got… HAIR!! And gravity-defying boobs.

But loss has found a way: she self-consciously shows me her tiny hands, the top of her left thumb surgically removed to halt the spread of melanoma, a malignant skin cancer.

I wonder what she’s doing for 60.

7 thoughts on “Baldly Forward

  1. I am sooooooooooooooo angry that our government lies constantly to us and allows these drug companies to get away with this.. I had the most beautiful hair in the world. I was known as the girl with the hair. Now people whisper when I walk by. I am 4 years into my recovery and am so not accepting. I will never trust a doctor again after this. They should of told us and they didnt. And most of all I hate our government for allowing this drug to be given…With the billions of dollars given every year to Breast cancer. This is the best they can do???? They will never find a cure because this is a business!!!!!

  2. Thanks for this blog. I, too, am currently bodily bald for the second time and experiencing the head only sweats of chemo. It’s good to find out what we share as we deal with ovarian cancer. At this point, I’ll do what it takes to buy more time with family and friends. So bald is beautiful, even if it’s the permanent state. I hate my wig–the sweats are much worse, so I alternate (and wash often) a selection of hats and caps, and occasionally just go briefly enjoy the sun on my bald head. I may lack hair, but I still have my teeth and my mind. Two out of three ain’t bad! Thank you again. You and people willing to share your experience all give the rest of us courage.

  3. I can’t believe that medical professionals/drug companies know this, but that they don’t tell patients who are at their most vulnerable. It is morally reprehensible!

  4. Thanks for the blog. I think it is great. I admire your courage to just wear your ball cap at the gym. I am the opposite. I wear my wig at the gym as I don’t have enough confidence to go bald or wear my ball cap. I hide in the washrooms when I need to change so that I can take off my wig. I am a marathon runner but don’t run with my wig on as it is too hot (just my ball cap) and I would be too afraid of it blowing off in the wind. I am constantly paranoid of someone from the gym recognizing me returning to the gym after my run with just my ball cap on and noticing that I actually have very little hair/no hair and not mid length black hair like my wig.

  5. Thanks for your very encouraging blog. I’m not bald, but I have the male pattern thinning. I used to have thick hair that I was proud of. My mother and grandmother’s hair was thick. Now I have this thin stuff with my scalp shining through. A little Crypt Keeper-ish.

    I didn’t wear wigs or scarves when I was bald. They just didn’t suit me. I have a fine collection of hats that I love. Hats that wouldn’t fit before when my hair was so thick. I have dreadlocks. I used to think it was great when some scalp showed. That meant that my locks were freshly twisted and beautifully groomed. Now there is waaaaaay too much scalp shining through. My locks are long but thin. I’m thinking of cutting them and wearing my hair loose and natural. Maybe that will camouflage the shine. I use Joan River’s scalp makeup now. It works so well I think my hair has grown in, until I shampoo and my scalp comes shining back through.

    I used to tell everyone how much I love love love my cancer doc. Now I’m having more and more reservations. First after my lymphedema diagnosis, that he just tried to blow off. Because the swelling was minor the said, “Oh, well, if you were sitting across a cocktail table from me no one would notice.” Well, I notice and I want to do something about it. I was not told that removing the lymph nodes had this side effect.

    I was told that my hair would grow back. No word on the male pattern baldness. If I didn’t stay on the internet looking for sites like this I would be out there on my own. The docs just want to be able to say you don’t have cancer anymore, after that they’re done. That’s not good enough.

  6. Thanks for the blog. My name is Linda, and I live in Melbourne (Victoria) Australia. I too have been left with permanent hair loss since having a right breast mastectomy, 3 rounds of FEC and 3 rounds of Taxotere chemotherapy in 2008/2009. If I had a dollar for every time a person told me not to give up on my hair being restored again, I would be a very wealthy woman. My team of doctors continue to have a blank look on their faces when I tell them each year that I don’t understand why my hair has not come back. I rarely go out without wearing a wig, because well-meaning people in the street stare and sometimes say things to encourage me, presuming I have either just had chemotherapy, or are currently undergoing chemotherapy. Imagine their surprise when I tell them I finished chemotherapy 5 years ago.

  7. My Story is very sad. I had stage one cancer, less than 2 cm, clean lymph nodes. My oncologist convinced me that I need chemo before surgery, 4 TC 21 days apart. I had very bad reaction after 3rd, so I refused to do forth. Nobody told me about permanent hair loss. Looking back I am convinced that i did not need chemo, that surgery and radiation would do the job. I am so devastated, many nights I feel like taking my life.

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