A Melancholy Anniversary

Ten years ago today, I saw my hair for the last time. I had received my second treatment of FEC (Fluorouracil, Epirubicin Cyclophosphamide) the week before and had been ‘finger combing’ my hair every morning since, knowing it was only a matter of time until clumps of hair would abandon my scalp and my inevitable baldness would ensue.

On February 13, 2007, I had a lunch date with my good friend John. In the shower that morning, my finger comb filled up over and over with my loosening hair. Although I knew I was going to lose my hair with treatment, I surprised myself at how upset I was watching the hundreds of strands collect at the drain.

I got on the phone to the hairdresser only to find out my regular stylist was off that day. I lost it and had to hang up. Once I composed myself, I called back to make a late morning appointment with someone else and John and I stopped off at the salon for a really short haircut before heading off for lunch.

I had a really good head of healthy, full ‘Irish’ hair—so much so that sometimes I would grumble at how long it took to dry—I could never go to bed with damp hair because it would be a wavy mess in the morning and I would have to start the drying process all over again. I remember the last time I wished my hair would dry faster and have often regretted even thinking it.

I was so lucky as every day I could get out of bed, run my fingers down my part and my hair would settle into its style. With a bit of blush and lipstick, I was ready to start my day. My eyebrows had thinned a bit as I got older, but I had lovely, lush lashes which had never required mascara—I had always been a ‘get up and go’ kind of girl. I felt lucky that I never had to worry about running mascara or spend that extra time at night removing eye makeup.

How things have changed! I have about one quarter of the hair I had in the shower that fateful morning. My thin, post Taxotere hair sticks up all over my head every morning and needs ‘arranging’ daily—sometimes more often if I am caught in the wind and my extra strength hair ‘goos’ don’t hold. I’ve never been a hat person—with all the hair I used to have I just got too hot and now wearing hats just reminds me of when I was bald and sick and had to wear them. My eyebrows are non-existent and have to be drawn on every day. My biggest fear is that one or both will wipe off or smudge and I won’t notice. I’ve never been a mirror checker and like wearing a head covering, I still haven’t adopted the habit.

Our appearance is a neon sign advertising that something is, or has been, very wrong with us.

I find it interesting that TV ads regularly show men and women lamenting their thinning hair and bald spots with various companies offering treatments and potions to restore their manes. Words like ‘embarrassed’, ‘devastated’, ‘humiliated’ and ‘depressed’ are used to describe their feelings. When cancer patients use these terms with regards to how they feel about their Taxotere induced hair loss, they have been ridiculed and maligned and told they should be happy to be alive. What’s the difference? If someone who is genetically predisposed to thin hair can elicit public attention and commiseration why can’t those who unknowingly took a drug to cure a life-threatening disease and suffered the consequence?

Taxotere users generally don’t have only their hair loss to contend with. Our group has experienced body changes with lumpectomies or mastectomies and the associated, constant nerve and bone pain; side effects of medication including loss of feeling (neuropathy) in our hands and toes, osteoporosis and joint problems and the constant cloud of recurrence or worse yet, spreading of the disease. We all wonder if the serious treatments we endured have been enough.

Our appearance is a neon sign advertising to the world that something is, or has been, very wrong with us. After treatment, life usually returns to normal and cancer becomes a mere blip on the timeline of life, but we are reminded every day of the journey we have travelled and the unknown road ahead. Most of us can’t go out in the world without hairpieces, wigs and time- consuming make up tricks—friends tell us not to worry about it, but if the shoe was on the other foot….

I am thankful that I was never one to depend on my looks, but I am more self-conscious now than I ever have been—even combined with the ‘who knows me?’ and ‘who’s looking at me?’ attitude of an older woman. Very few friends have ‘drop-in’ privileges—I don’t answer my door if I don’t have my hair done and my brows on. I have refused invitations to see former colleagues and old friends because I expect them to be curious about the huge difference in my appearance and I don’t feel like explaining everything or re-introducing myself—it took me four years to recognize myself in a mirror! I don’t seek out former acquaintances and avoid social media. I have changed jobs and met many new people, but take the first opportunity when I get to know them better to self-consciously explain this is a new hair situation. To the annoyance of my friends, picture taking is absolutely out of the question—I don’t know if I’ll ever feel comfortable with the way I look.

I often ask myself how much longer I am going to hope for the old me. I have waited nine years for my hair to return and am starting to accept that it’s just not going to happen. I have tried all kinds of treatments but, like the other members of our group, there has been little improvement— certainly not enough to continue the twice-daily regimen and associated scrutiny of my scalp.

We all recognize that many people in the world deal with much more serious circumstances, but we were put in this situation unknowingly and are left to deal with an unnecessary and very difficult consequence. Members of our group diligently scour the Internet for new discoveries to potentially reverse our plight. I keep my fingers crossed that by my 20th anniversary this website and our group will no longer need to exist.

I can only hope that, in the meantime, the ‘head shamers’ and trolls will step back and examine why they are unable to empathize or keep their comments to themselves.

 

Christine: This is not as easy as people think

Before chemo with Taxotere

Those of us who have experienced chemotherapy for breast cancer can no doubt recall all too well, the horror of the loss of our hair.  For most women, this initial distress gives way to eventual acceptance, because we take comfort from our doctors telling us that our hair will soon grow back. Sometimes there is even curiosity about colour and texture, and a certain eagerness present, waiting for that familiar fuzz to appear, signaling the start of a new head of hair.

Or so it seems.

For a small minority of women, (although the research has shown that numbers are increasing), their hair only partially regrows and is extremely thin, or worse still, does not regrow at all, leaving the woman completely bald. A quick look at this website is very revealing.

I was in the former category. I waited patiently for my hair to return and the weeks went by with evidence of some very modest growth, and I told myself that my hair was particularly slow to return. At the same time however, I had a gnawing feeling that something might be wrong. My fears were realized when I attended an exercise group for survivors over a few weeks and began comparing my hair to that of the other group members. Mine was so sparse in comparison to the other women and I was further along in terms of time since the end of chemo (about a year in fact).

I will never forget leaving the dermatologist’s rooms after being told that my lack of hair growth was due to my particular cocktail of chemo drugs, the likely culprit being Taxotere. I was utterly devastated as I felt I had lost my femininity and aged another 20 years, all at once. It was so much worse than losing a breast to cancer, because that could be fixed – I had undergone a reconstruction. Not for a second was I not grateful to be alive, but I thought it so unfair that I did not look the same as I did before the cancer tsunami struck. Looking in the mirror every day is a constant reminder of what I have been through.

After chemotherapy

I used to love going to the hairdresser for a blowave, as this was my special treat for myself. Now, I avoid going anywhere near hairdressers because of my acute embarrassment.

It is now 4½ years since chemo took away my hair. After crying many tears, I have slowly begun the process of accepting the situation, but remain hopeful that there will be a remedy out there somewhere, soon. I have had some significant success through taking Minoxidil, which is the oral version of Rogaine, the product balding men use. I feel resentful about having to take yet another drug, to help with a problem that never should have happened. I will need to be on this drug for life as if I stop, my hair will fall out again.

I wear wigs at times and most often hairpieces in the winter as my head gets a lot colder than it used to. This is not as easy as people think. Anyone who has worn a wig in the summer will tell you it’s hot and uncomfortable. I can now wear my hair in a ponytail, but need to comb it just the right way to avoid exposing my scalp in the very thin areas.

To make matters worse, some doctors tell me my thin hair is hormonal and is a result of the menopause. I had a full head of lovely thick hair prior to chemo and it is simply nonsense to attribute this vast change in my hair’s volume to hormonal changes. I know it is not the case.

Yes, one’s hair is not one’s life, but I never realised how much a part of one’s identity as a woman it was, until I lost it.

Christine (Australia)

Michelle: The inconvenient truth

If you were told that you needed to have chemotherapy to combat cancer, what is the first thing that would most likely come to mind? After the initial shock of the diagnosis, you would most likely be ready to fight the disease with everything that modern medicine has to offer. You would know that chemotherapy would most probably cause you to lose your hair, but conventional wisdom says that after treatment, your hair would grow back thicker, stronger, and more beautiful than ever. Right? Wrong! There are many of us who, after treatment, much to our horror, learned that we would be permanently bald. This is a disfigurement that in this era of modern medicine is not only devastating, but totally unacceptable.

My last haircut

My last haircut

My journey with chemotherapy induced permanent alopecia started three years ago. Once I finished treatment for Stage 2 invasive ductile breast cancer, I eagerly anticipated the regrowth of my hair. I was ready to ditch the wigs, and the scarves and buffs and reclaim what cancer took from me. Each day I would watch for sprouting hair, but it seemed slow in coming. A new head of hair was the prize I had earned after following the treatment protocol. Chemotherapy zapped me of my energy, the double mastectomy took my breasts, the radiation caused burning and scarring, and due to an anomaly in my genetic structure, the hysterectomy that followed caused hot flashes and weight gain. These were byproducts of the cancer treatment that I anticipated. I did not anticipate that years out of treatment I would be left with fine wisps of hair that grew in clumps around my head, but offered no coverage and no relief from the wigs and scarves that I had been wearing during the treatment. The painful reality is that I will forever look like a cancer patient.

The depression that this threw me into was unreal. A college freshman carelessly tossing her hair in front of me, a random shampoo commercial during my favorite television show, the drive home from work that takes me past my former hairstylist’s salon, or the sight of my blow dryer and hair straightener stored in my bathroom collecting dust are all everyday occurrences that bring me to my knees. I wasn’t prepared for this, I wasn’t told that this was a possible side effect of chemotherapy, and I wasn’t given a chance to make this decision for myself. There are many options in cancer treatment, and although I know that I am blessed that my cancer was halted, it came at a high cost. Had I known that there was the slightest chance that I would be permanently disfigured by the treatment, I would have paused and explored other options. Ultimately I may have opted to go with the treatment that I was given, but I had a right to be given all of the facts.

There are many people who hear my story and callously remark that I look just fine in my wig. Though that may be the case, it is not possible, nor comfortable to wear a wig all the time every day. I have also learned through experience that there are many things that simply can’t be done in a wig. You can’t ride a roller coaster or go to a water park with your kids in a wig. You can’t exercise vigorously or ride a bike on a trail. You can’t hold a squirmy baby or hug a friend too tightly because your wig will slip. Convertible car rides are out and you can no longer ride on the bow of a boat with your hair flying in the wind. You can’t wear a wig on the beach or ride a jet ski, and your head is always hot in the summertime. Trying on clothes with a wig is impossible and you can’t walk outside on a windy day without holding on to your wig; if it is raining and you have to hold an umbrella as well, it is nearly impossible. You can’t dive into a pool or walk through the woods in a wig. You can’t be intimate with your husband in a wig. Braiding your hair, wearing a ponytail, or tucking your hair behind your ears can’t be done in wig. When I am in situations where I can’t wear my wig, I am forever explaining my situation to friends and strangers alike. “No, my cancer hasn’t returned, I’m just bald.”

All of these things I have experienced firsthand. My new identity is a woman gripped by the physical and emotional horrors of chemotherapy-induced alopecia. If this is my cross to bear, I will bear it gladly, but I will not go quietly. The drug companies owe us answers. Cancer treatment is a billion dollar a year industry. Woman who are given chemotherapy deserve to know that this side effect is a real and possible reality. We can’t continue to be stripped of everything that makes us a woman all in the name of cancer treatment. We are an inconvenient truth and we deserve to be heard.

My new hairstyle

My new hairstyle

Kathy: So Much Loss

When I was 39, I was diagnosed with a Grade III infiltrating duct carcinoma. It was a couple of weeks after my daughter had spinal surgery, and I was so in shock, I just did everything that was recommended to me. I assumed that the doctors knew everything, and would do only what was absolutely necessary to save my life so that I could care for my family.

I had a lumpectomy, and a second surgery was performed because the edges were not clear. Some of my lymph nodes were also removed. I had CEF chemotherapy (Cyclophosphamide, Epirubicin Fluorouracil) for six months, and it was not long before just looking at a Cyclophosphamide pill made me gag, and I could hardly force myself to put the pill into my mouth and swallow it.

I had a port implanted under my skin near my collarbone, and I hated it. I hated seeing it there, along with my bald head. I had sixteen radiation treatments after that, and by the time I went away for my anniversary three months later, my head was covered with a dark bristly brush cut, which I also hated because I have always worn my hair long.

It felt so delicious when spring came, and I could remove my winter cap and the wind blew through my hair because it had grown some.

It felt WONDERFUL!

Five years later…

I was feeling rather confident that that was the end of the cancer, when a lump returned in the same breast.

This time the surgeon said that a mastectomy was the only option. So, I had that done, and then four treatments with Taxotere. I was thinking that it would be a breeze because the treatments were going to be finished in only two months, and by the end of six months I was going to have a full head of hair again. I last saw my hair in all its glory in 2006, and I have regretted hearing of Taxotere ever since.

With my very first treatment, I had severe pain in my hip, and my hands turned red. Soon I had a pimply rash on my head, and my nails all started to peel off my fingers halfway down. My nails have grown back, but they don’t feel right. What little hair I do have is so sparse and wispy that I have to wear a hat at all times.

My left eye tears often, I assume from the tear duct scarring, and my eyes are very dry. It is funny that I can have a puddle in the corner of my eye from time to time, but it is generally very dry. Ironic…because I have never stopped shedding Taxotears.

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.

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

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.