All Trumped Up

I am forever grateful to have survived cancer. This blog article is simply to raise awareness about chemotherapy and permanent hair loss (alopecia).

I’ve read and heard comments from people that permanent hair loss is not a big deal; that I should be lucky to be alive. Yes, I am forever blessed that I am indeed alive. But the accusation that being alive trumps my right to express my displeasure that I am bald is all trumped up! Baldness is a big deal, not just to myself, but also to society as a whole. Go online and search Donald Trump and the word wig or hair. The endless focus and stories surrounding his hairline say it all. I have strong empathy for men out there who deal with male pattern baldness.

Baldness is accepted by our society at times. Macho athletes now shave their heads and it’s cool. It’s a start. But the baldness of the president-elect of the United States is not accepted. And female baldness is certainly not accepted. There is acceptance for those undergoing chemotherapy. Our society has empathy for brothers and sisters who share in this fight. But then, permanent baldness is another story. If a woman has male-pattern baldness, she is considered unfeminine. If a woman has alopecia, she is stared at like a freak show. Or, she is mistakenly assumed to be a cancer patient.

Don’t get me wrong; there is nothing wrong with being a strong cancer patient fighting for his/her life. But who wants to be labeled for life as something that they are not?Unfortunately, this ugly disease does result in people fighting cancer for the rest of their lives. I’m not belittling the struggles that others face daily that are even more difficult than permanent baldness. I’m discussing this issue only because recent news tells me that it could have been avoided. It is that fact that makes all the difference.

There are two drugs, Taxol and Taxotere, which have similar outcomes and side effects. But Taxol does not have the significant long-term side effect of permanent hair loss. Taxotere is made by a drug company that has overtaken the market share of this multi-billion-dollar-a-year industry. And the reason women all over the country are upset is that there is alleged fraudulent behavior. Wouldn’t you be upset if permanent baldness could have been avoided?

Each of the women I met along my journey through cancer treatments had a vibrant, interesting life before cancer. I did. And want to be known for who I am not for what disease I had. Having little hair on my head is a neon billboard that says, “I’m fighting cancer” or “I’m not feminine.” I am much more than either of those labels.

I’m not going to lie. When I read that the chemotherapy cocktail I was given had de-womanizing effects, I wanted to throw up. But news of the cause of my lifelong, hair-loss hangover was a relief for my husband and me: “Phew! I’m not a freak. There is a reason for this baldness.” Even I, a bald woman, share society’s viewpoint that female baldness is not acceptable, unless there is a temporary medical reason.

But this medical impact is permanent and comes with permanent impacts. For one, breast reconstruction surgery was not recommended for me because the doctors were unsure if I had an autoimmune disorder. The alopecia was a major factor in that. We didn’t know why I had alopecia. And even though I didn’t test with the typical blood test markers for an autoimmune disease, it was clear my body was rejecting my hair follicles. To the doctors and me, alopecia was an outward sign of something inward that wasn’t working properly. And we feared that my body would reject a breast implant as well.

Over nine years have passed, and many bad emotions have turned to joy as I watch other women conquer this complex curse called cancer. Time heals some wounds. And love is a cure for much. But, hiding my baldness is an ever-present chore. I was in my thirties when diagnosed, and I have a long life yet to live.

So I am indeed concerned that these doctors, who held my life in their hands, were not given the proper information from the drug distributors about the long-term impact. I have no doubt that, had I been told that Taxotere had a chance of permanent baldness, I would have selected Taxol. I know this because I have notes asking four different doctors the difference between the two. And I was told that the main difference was the inconvenience of getting the Taxol more often. This inconvenience is nothing compared to forty years of wearing a hot, itchy wig. A wig that often has a mind of its own, especially in the wind.

Some may think, “What is the big deal? There are side effects of these drugs that include a secondary cancer. I don’t hear people complaining about that.” The difference is that I knew of that risk and decided on that risk. The difference is that I made choices based on the information given. Choice. Choice is what makes us human, male or female. Is it possible that most women, not just me, might have chosen Taxol over Taxotere?

 

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)

My Hair or My Life?

Choice

Ever since a story in The Globe and Mail linked the chemotherapy drug Taxotere to irreversible hair loss, some have tried to turn it into a “my-hair-or-my-life” debate. This is just hair-raising hyperbole and a blatant disregard for the facts.

Why are we splitting hairs with a bunch of bald ladies? After nearly a year of surgery, chemotherapy and radiation, they just want to return to some kind of normal. Instead, they’re diagnosed with the boobie prize of side effects: alopecia, or long-term hair loss, a medical condition in its own right. And all because no one bothered to tell them that Taxotere can cause irreversible hair loss in 3 to 6.3% of patients administered the drug.

None of these women’s lives were in imminent danger. They were all given a positive prognosis and every reason to believe that their lives would return to some kind of normal. This, in large part, is due to more advanced diagnostics, treatment and medications. Along with this, it stands to reason, should come more information about their treatment options.

Let’s keep our eye on the real issue. This is not about vanity. It’s about a patient’s right to make informed choices about their treatment, it’s about a drug that has raised a red flag at the Food and Drug Administration (FDA) and it’s about a drug company that has a history of obscuring the facts.

In April 2009, the FDA issued a warning letter to Sanofi-Aventis, one of the largest pharmaceutical companies in the world, for a reprint carrier citing a study in the Journal of Oncology. The study compared the efficacy of Taxotere and Taxol, the trade name for paclitaxel, in treating locally advanced and metastatic breast cancer.

According to the FDA, the reprint was “false or misleading because it presents unsubstantiated superiority claims and overstates the efficacy of Taxotere.”

In its warning, the FDA stated that it is “not aware of substantial evidence or substantial clinical experience to support the claims made in the carrier regarding Taxotere’s level of efficacy or superiority to paclitaxel.”

Indeed, a study in the New England Journal of Medicine compared the efficacy of the two drugs. It concluded that women who received Taxotere every three weeks had “better disease-free survival,” but women who received Taxol each week “lived longer overall.” Taxotere/Taxol. Tomato/Tomato. Except for that hair thing no one wants to mention.

This is not the first time that Sanofi-Aventis has gotten a slap on the wrist. In 2007, Aventis paid more than $190 million to the U.S. Government to settle drug pricing fraud. The drug manufacturer agreed to settle False Claims Act allegations concerning its pricing and marketing of Anzemet, an antiemetic drug used primarily in conjunction with oncology and radiation treatment to prevent nausea and vomiting.

The government alleged that the pharmaceutical company engaged in a scheme to set and maintain fraudulent and inflated prices for Anzemet knowing that federal health care programs established reimbursement rates based on those prices.

“Marketing drugs to doctors based on potential profits undermines confidence in the integrity of our health care system because it treats beneficiaries like commodities instead of patients,” said Assistant Attorney General Peter D. Keisler.

Once again, with Taxotere, patients feel like they are being treated like a commodity. In this case, a group of breast cancer patients who feel like they are unwitting guinea pigs in a science experiment gone wrong.

“Everything has been loss,” one woman wrote A Head of Our Time. A lost breast, sleep, memory. The friends who flee when they hear the word “cancer”. And then the final insult: hair.

Then there’s all the things you gain: painful scar tissue and lymphedema—swelling in the arm or hand caused by lymph fluid buildup—, a compromised immune system, weight. But they’re lucky to be alive say detractors.

No one can understand the hair-or-my life dilemma better than my friend Jem: she has Stage IV breast cancer. As the mother of two small children, she wanted to know all the side effects of her cancer drugs before she began treatment. After all, she has to answer questions like “Mommy, why are you bald? Mommy, why are you so tired?”

Told it was Temporary

Jem and I did our homework and neither of us found anything in any consumer literature or cancer website indicating that hair loss could be permanent. Just the reassuring word “temporary”. MacMillan Cancer Support, which bills itself as a source of support and a force for change in all things cancer, states on its website that hair loss is “temporary and all your hair will grow again once treatment ends”.

The Taxotere product monograph states that “Hair loss may happen shortly after treatment has begun. However, your hair should grow back once you’ve finished treatment.” “Should”—a little word to gloss over the truth. And one that can be easily overlooked in the shock of diagnosis and the myriad decisions to make.

Despite the daunting list of possible side effects, we made a decision to trust the drugs our oncologist prescribed and took the leap of faith. The last thing the chemo nurse said to me before plunging the IV needle into my hand for my first treatment was “Chemo drugs are stupid. They kill everything, not just the cancer.”

This spoken by a man wearing full biohazard armour to prevent third-degree burns from administering the potentially lethal drugs.

He plunged. Then I waited. Two weeks later, my hair fell out, right on schedule. I did my best to Own the Chrome, throwing a head-shaving party and wearing wacky wigs. After all, I was told, it was just temporary.

“I wasn’t freaked out when I lost my hair because I was told it would grow back,” another woman wrote. “I was ready for the adventure of seeing how it would be. I wasn’t prepared for looking like the “Crypt Keeper” for life. It’s more than just being bald, it’s a constant reminder of cancer.”

She’s not alone.

“The one side effect possibly most dreaded by the patient is alopecia,” wrote Dr. Scot Sedlacek, an oncologist at the Rocky Mountain Cancer Center in Denver, Colorado. “Yet, we have always told our female patients don’t worry, [hair] will always come back. This last statement may not be true,” he writes.

His landmark study on the effects of Taxotere and irreversible hair loss found that 6.3% of study participants experienced Persistent Significant Alopecia—hair re-growth less than 50% of the pre-chemotherapy amount—up to seven years after Taxotere was administered in combination with Adriamycin (doxorubicin) and Cyclophosphamide.

“Such an emotionally devastating long-term toxicity… must be taken into account when deciding on adjuvant chemotherapy programs in women who likely will be cured of their breast cancer,” it recommends.

My Hair or My Quality of Life?

French oncologist Hugues Bourgeois took it into account, presenting research on 82 patients with long-term persistent alopecia to the prestigious 2009 San Antonio Breast Cancer Symposium in December. In his medical practice, Bourgeois gives his patients a choice of Taxol, an equally effective option to Taxotere, but with no known risk of irreversible hair loss.

Perhaps the question would be better phrased, my hair or my quality of life?

If the emotional toll of hair loss seems trivial, how about the financial cost of wearing wigs, painting on eyebrows and gluing on eyelashes for life? There are financial aide programs to offset the cost of temporary chemo-induced hair loss. None for permanent. That cost, too, must be borne by the patient for life.

How about the loss of income due to lost image and lost self-esteem? I work in advertising and I can tell you that no agency wants a bald lady to spearhead their shampoo or hair colour campaign or a lashless lady to hock their long lash mascara. In this biz, you don’t just need to dress for success—you need to tress for success.

All this hair loss, psychological devastation and chemotherapy might not even be necessary. A new molecular test, recently reported by the Associated Press, analyzes 21 genes to help predict whether a woman really needs chemotherapy and whether a cancer is likely to return within the next decade. This could save health care systems untold amounts in “unnecessary treatment and save patients such gruelling side effects as nausea, nerve damage and hair loss,” it stated.

After the unexpected side effect of permanent hair loss, it’s surprisingly difficult to go forward. “Are you cured?” everyone asks, long after the end of my treatment. My bald head and absent brows and lashes give me an unsettling “terminal” look, like having a scarlet “C” stamped on my forehead.

No doctor dares use the other C-word: cured. Who knows what rogue cancer cells are at work? The reality is that many women are living to have breast cancer multiple times, making it more like a chronic disease. A very profitable one.

“Cancer is big business,” my pharmacist said when I commented on the cost of my cancer drugs. “And they’re not in any hurry to find a cure.”

In Breast Cancer: Poisons, Profits and Preventions, a report on the big business of breast cancer, investigative journalist Liane Clorfene-Casten concludes that as a result of a focus on cure, rather than prevention, the population has been brainwashed and businesses have quite literally gotten away with murder.

“Those who will profit,” Clorfene-Casten states, “include chemical companies that make not only the cancer-causing pesticides but also the chemotherapy drugs used to fight cancer. Others are major cancer research centers whose well-connected directors shape the national dialogue on cancer.”

According to Breast Cancer Action Montreal, more than 95% of funds raised by big events like the Run For The Cure are used to build, equip or update cancer treatment centers, leaving a pittance for research into the causes of breast cancer. Ironically, Sanofi-Aventis is a sponsor of this event, entitling them to lots of pink PR and some nice tax breaks.

One thing is for sure: a bunch of bald ladies aren’t good for their corporate image… or their bottom line. In this chirpy era of the corporatization of breast cancer and the cult of pink kitsch, it’s time to take off the rose-coloured glasses before we lace up our sneakers. If these breast cancer patients are being dismissed as vain, this does not bode well for health care consumers in general.

The Canadian Cancer Society trumpets on its website that “We believe that people with cancer must make treatment decisions with the best available information, including knowledge of what the treatment can do and what the side effects may be”.

Even if those side effects seem superficial. Cancer, after all, is not just a flesh wound and the long-term impact of treatment metastasizes throughout a so-called survivor’s life. A woman’s flowing locks are not just a celebrated sign of femininity, hair is a multi-billion dollar industry. So, how many women would choose Taxotere if they knew the facts?

Should these women just smile sweetly so more patients can be subject to the unwitting risk of irreversible hair loss? What about other patients with other undisclosed side effects? Should they take their medicine with a spoon full of sugar?

It’s cruel and unusual to split hairs with a bunch of bald ladies who just want to get on with their lives after breast cancer treatment. This is about much more than a bad hair day. It’s about health care consumers who must hold companies accountable for their actions.

To ignore it would not be vain. It would be dumb.

Photo: openhandweb.org

Shirley: The Taxoterrorist

I was a healthy 47-year-old woman… or so I thought. I had never been overweight, always ate healthy and swam four times a week. I didn’t smoke. No cancer in the family. How could I possibly get breast cancer?!

Finding the lump in my breast was a massive shock—it moved around and hurt. In cases like that, they often tell you it’s not cancer. Well mine was! I had a lumpectomy, chemo FEC X 3, followed by Taxotere X 3. Then radiotherapy and Tamoxifen.

Each time I went for follow-up appointments with my doctors, I’d pull my scarf off my head and ask “It’s not growing very fast is it?” My questions were always answered with puzzled looks.

At my six-month check-up they delivered the final blow. “We’ve contacted Sanofi-Aventis, the manufacturer of Taxotere,” they said. “I’m sorry to say that your hair will never return. Your hair loss is permanent.”

I didn’t believe them. I was in shock. This can’t be, I thought. I was told my hair would return. Four years later I can say they were right.

For the past three years, I’ve worked tirelessly to be heard: by my doctors, by health regulatory bodies and by Sanofi-Aventis. I soon realized that I wasn’t the only one… or the third… or fourth person in the world with this bizarre side effect.

I have e-mailed my medical team every week for information and support. After all, they gave the drug, so the least they can do is to help me get to the bottom of this.

I wrote to Sanofi-Aventis. They said they were sorry, then to add insult to injury, said that it’s very rare for Taxotere to make patients permanently bald. From that day forward, my life mission has been to find out how rare persistent chemo-induced alopecia actually is.

The dismissals and cover-ups that have emerged have only spurred me on. I was denied the chance to make my own risk assessment. It was my right as a patient to understand my treatment and to agree to it or not.

I am fearless in my quest to ensure that every woman is offered a choice when they are offered Taxotere as part of her chemotherapy regimen. I won’t stop until every woman knows the truth… and every woman has a choice—the choice I was denied.

Baldly Forward

FLR3065866-39

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

pink1

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.