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

Lise: Finding the Colour Again

Finding the Colour Again, Watercolour by Lise McDermid

Finding the Colour Again, Watercolour by Lise McDermid.
Inspired by the Marina McDonald photo “Take What you Want and Pay for it.”

 

The painting details my receding hairline, the ghastly thin hair, my lack of eyebrows and eyelashes, the impact of the permanent disfigurement of losing my thick, long blond hair from FEC D (FEC T).  The cruel irony of being alive but having to live with such a horrifying disfigurement, the desperation I feel when I look at myself closely in a mirror. The colour and vibrance in my life has washed away.

Coming to terms with the long-term loss of my hair has been a very slow process.
It has been much harder to cope psychologically than with the cancer itself, my double mastectomy and radiation, the loss of my fertility from premature menopause, the continued side effects from anti-cancer drugs and the long wait for reconstruction to be completed.

The cow is a reminder of the constant online support I’ve had from other breast cancer survivors.

by Lise (Australia)

Follow her award-winning blog: www.shittytittiebangbang.com

Taxotere Doesn’t Discriminate

I took photos of my hair returning because I was so excited.  I remember the earlier photos and how I thought I looked like a dandelion – and then it all stopped with this. Nothing has changed in five years . . .

I took photos of my hair when it started to return because I was so excited. I remember the earlier photos and how I thought I looked like a dandelion, then it all stopped with this. Nothing has changed in five years . . .

We’ve banded together as bald breast cancer female survivors. We found each other via this site and our numbers continue to grow.

I have always wondered about the people who don’t find us, are befuddled by their lack of hair, don’t report, or succumb to their disease and this side effect remains unknown. I have particularly wondered about people with OTHER cancers treated with Taxotere. Last week, I had my first experience with this.

I met a man, a prostate cancer survivor, who was treated with Taxotere. He commended to me (totally unsolicited) that prior to his treatment with Taxotere he had a full head of beautiful silver hair.  Since his hair “grew back” after Taxotere, it is thin, brittle and dull.  Because he is a man, I think it is easy to overlook this as a potential side effect from Taxotere vs. a man aging. He is convinced it’s from the Taxotere and so am I, knowing what I now know.

This man likely fits into that group of people treated with Taxotere who either don’t report this to their oncologist, or who are brushed off by their oncologists. We all know who we were and how our hair was before it all fell out and how it only sort of grew back—here and there or not at all. How can it possibly be anything else?

We’re all around us, male and female, and as Taxotere is being used to treat a lot of different cancers, our numbers will continue to grow. Every time I see a woman (yes, it’s always a women because as a society we tend to accept bald men) whose hair is thinner than typical thinning that often comes with aging, I always wonder, “Did she have cancer and was she treated with Taxotere?”

I would never have given a second thought about that man’s hair loss I’ve described above — and I should! Taxotere doesn’t discriminate, is not used solely in treating breast cancer, and as its use continues to become more prevalent, we should be warned of this potential PERMANENT side effect — all of us!

by Suzanne   

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.

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 and Sanofi-Aventis: Facing off on Facebook

As part of my campaign to make patients aware that the chemotherapy drug, Taxotere, has been linked to permanent baldness–and that it might not just be temporary as I was told–I started writing letters to Sanofi-Aventis, the manufacturer of the drug. I wanted to see if they would cover the costs of my wigs for life. They said they were sorry, but they weren’t going to do anything. Then they didn’t reply to any more of my letters. So I posted photos of my ugly bald head on their Facebook page. Still no answer. So I kept posting. Then they shut down their page. Still no word.

But word travels fast in this digital age. Now the bloggers are abuzz and the Tweets are aTwitter. The rest, as they say, is history:

Pharma Social Media for Dummies
The Balding Blog: Permanent Hair Loss from Cancer Drug Taxotere
Bnet.com: Sanofi’s Latest Challenge
Bnet.com: Sanofi, European Regulators to Bald Breast Cancer Patients: Drop Dead
Pharma Marketing Blog: Patient Unadvocate Lays Siege to Sanofi
Pharma Marketing Blog: Disgruntled Patients Shuts Down Sanofi-Aventis Facebook Page
MedAdNews Insider: Sanofi-Aventis Social Media Mess
Siren Song: Online Reputation is Essential: Sanofi-Aventis Fake Facebook Page Has 3,783 Fans
Trusted MD: Sanofi-Aventis Feels the Social Media Pain
Mark Blevis: Sanofi-Aventis Missed its Tylenol Moment
Extrovertic

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.

Cynthia: The Bald Facts

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

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

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

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

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

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

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

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

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

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

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