The Voice of Canadians With Breast Cancer

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Have Hair, Do Care

In this new, monthly column, senior writer and editor Adriana Ermter shares her personal experiences with breast cancer

By Adriana Ermter

Breast cancer made my hair thicker. And wavy-er. Not right away obviously. It’s not like it was a special prize I was gifted with to make up for the shock and fear of being diagnosed with breast cancer.

My formerly thin and fine hair has always curled a bit, but only after it has grown past my earlobes. It was shoulder-length when I was diagnosed, so I can’t pinpoint the exact moment I noticed the change. But it happened sometime after having surgery and undergoing radiation, but before starting Tamoxifen.

To be perfectly honest, I wasn’t exactly thinking about my hair then. Let’s face it, on the days I managed to crawl out of bed with enough time to drag my exhausted, aching body into a standing position under the shower and actually wash my hair, I certainly didn’t spend any additional time looking at it in the mirror afterwards. I didn’t have it in me and basically just let my hair air-dry as I stumbled to work before pulling it into a messy bun. On the days when I picked sleep over clean hair, dry shampoo masked the grease and made it look and feel thicker. Plus, more often than I’d like to admit, I didn’t always brush it. What was the point? I was only going to twist it up and out of sight. It was the first time in my life I could have cared less about my appearance.

Before then however, about a month or so after having surgery, my then oncologist told me that along with radiation I needed aggressive chemotherapy. Without missing a beat, she went on to tell me to expect to lose all of my hair after I’d had my second round of treatment. I cared about my hair then. I cared a lot.

Bad Hair Daze

For as long as I can remember, I’ve fretted about my blonde locks or more precisely, the lack of them. Throughout junior and senior high school I carted a cordless Butane curling iron around in my backpack. It’s shocking none of my school books ever caught on fire. Yet, when I got caught in the rain or the snow or just felt plain insecure, I’d race to the nearest bathroom, press the button on the side of the metal cylinder and start curling. I coveted swishy, thick, girl-next-door hair. Back then, mine had a slight green tinge from daily swim practice, perpetually smelled like chlorine and as far as I was concerned, was receding thanks to pulling a tight, thick plastic bathing cap on and off several times a week. I complained about my hair’s limp, thin and unpredictable style every single day. Now, with just one conversation, my hair instantly became my most prized possession. I couldn’t lose it.

At least that’s what I was thinking as the oncologist’s words continued to fall, numbing my body. My mind however was in overdrive, whirling with visions of baldness, no eyebrows or eyelashes, the flatness of the back of my head, wigs and hats, and most of all, utter disbelief. In the four months since I’d been diagnosed, had surgery and samples of my tumour’s tissue had travelled to and from California for the Oncotype DX testing to determine my susceptibility for a recurrence of invasive ductal carcinoma, all of my doctors had said I would most likely not need chemotherapy. And now I did. I didn’t cry, but I also couldn’t speak. I felt like I’d left my body and was floating alongside myself as I left the oncologist’s office with my best friend beside me and headed to the hospital’s labs to have the mandatory pre-chemo testing done on my vital organs.

When I was finished, my friend and I went to my neighbourhood pub. It was only 11am, but I ordered a vodka martini and my friend kept them coming. Still, I didn’t feel anything. Not the booze or the sadness or the reality of what this meant for my health and my future. Later that afternoon, as promised, my oncologist’s assistant called, confirming that the round table of physicians who’d met after my fateful appointment to review my chart were in agreement with the oncologist’s recommended course of treatment. The assistant then gave me the date for my first chemotherapy appointment. We hung up and I went home alone.

The Aftermath

I didn’t call my parents or my sisters. I couldn’t talk about the new direction breast cancer was taking me in and while I knew I was being vain and immature about my impending hair loss, I was terrified. I’d made peace, sort of, with losing an ice cream scoop sized chunk of my right armpit and breast. It saved my life. I was even coming to terms with knowing I would never have a family of my own. I was divorced and single. Who would I have a baby with anyways? But accepting I would lose the remaining parts of my femininity, my long highlighted hair, the eyebrows I’d painstakingly grown out after tweezing them pencil thin during the ’90s and the natural, long lashes I took such pride in had all helped me feel like some bit of my former self was still intact. The thought of becoming sicker through chemotherapy and losing everything that represented my womanhood and beauty felt cruel and hopeless.

I allowed myself to feel like this for exactly one day. Then, I made a to-do list that started with calling my stylist and booking an appointment to cut off my hair. The idea of shorter clumps of hair falling out was easier to bear than handfuls of long strands. I’d previously experienced hair loss, albeit to a lesser degree, when I was going through my separation and divorce. The insurmountable stress I’d felt then had caused my hair to thin, break and fall out. I knew that having a super short haircut made the loss less painful. I tried to convince myself that I’d be fine. I’d done this before.

What I’d never done however, was shop online for wigs and hats for chemo patients, but I forced myself to, and put a couple of the softest looking ones I could find into my e-cart to buy later. I even toyed with a purchasing a brilliant blue, pageboy-styled wig. I figure if I was going to be bald I might as well make a fashion statement and do it proudly. Then I called my sisters, parents and closest friends and shared the news before writing a detailed email to my workplace’s HR department outlining how I would like to manage this next step and my current workload. I asked to schedule an in-person meeting to talk things through, because I needed to keep my job. Being practical and taking action made me feel like I was in control, yet, in reality I‘d lie awake at night for hours, spooning my cat as my mind raced, despite the melatonin pills I’d swallowed before turning out the lights.

When Things Changed

A week went by and exactly one day before I was scheduled to cut off my hair, the phone rang with my then oncologist’s assistant wanting to book an appointment for another test. The timing however, conflicted with my first and upcoming chemotherapy appointment, which I pointed out—all of my exams were supposed to be completed before I started treatment. Confused, we hung up so the assistant could connect with the doctor.

An hour later my phone rang again, this time with the physician who very awkwardly told me I no longer needed aggressive chemotherapy. As I questioned her reasoning she began to back pedal, saying that while my Oncotype DX testing recurrence score of 25 points straddled the medium risk/high risk range for my age group and required chemotherapy, my new course of action would no longer include the invasive treatment. Stunned, I reviewed the transcripts my friend had carefully taken during the meeting with the oncologist. Nothing made sense. Typed in black and white, were the oncologist’s words, “Your breast cancer is much worse than we initially thought. You must start chemotherapy right away.” When I reminded her of this she became defensive and in that moment, I no longer trusted her with my care.

I wanted to yell and call her four-letter words for inferring that I was to blame, that I had misinterpreted our conversation. How could she be so callous? Why was she not owning-up to the mistake, the misdiagnosis she’d made? How could she not know that having breast cancer is stressful and there are so many details to remember and medical facts to learn, that patients like me depend on their doctors for guidance, honesty, care and transparency? But I didn’t. Instead, I asked if I could have a second opinion and would she be able to refer me to a reputable oncologist at Princess Margaret Hospital. She agreed and called the hospital on my behalf. I was booked to meet my new medical team the same week. But before I did, I picked up all of the paperwork, scans, lab and surgery notes and results from my prior team to take with me.

A Fresh Perspective

After multiple appointments with my new team of doctors, my new oncologist clarified that my former one had misinterpreted my Oncotype DX report. While my overall score was high for my age and would typically require chemotherapy, my breast cancer had been detected early and was a Stage 1, Grade 1 tumour. Combined with the tumour’s size and the wide margins of tissue surrounding it that my former surgeon had been able to remove, ideally eliminating any additional cancer cells meant that I could safely move forward with multiple courses of radiation and a long-term prescription of the chemo-infused oral drug, Tamoxifen. I did not have to have aggressive chemotherapy.

Hearing those words caused a cold sweat of relief to pour over me from my head down to my toes. It didn’t change the fact that I still had breast cancer, but it did wipe away the gripping fear of not knowing how sick chemotherapy would make me, if I would be able to take care of myself by myself, continue to work to pay for my mortgage, buy food to eat and tend to my cat. And I would keep my hair—all of it.

Buoyed with hope, I left my new medical team feeling lighter, that is, until I walked through the large reception area overflowing with other women who’d been diagnosed or were about to be told that they too, had breast cancer. Within this sea of women, some were bald, many wore soft-looking hats or printed scarves, a few had on wigs and all were patiently waiting their turn to see their doctors. It was overwhelming and I was instantly consumed with guilt for feeling elated to still have my hair. My face went red and tears stung my eyes. I’ve never felt less dignified.

Feeling Pretty Guilty

I’ve always known I like feeling pretty. On a dating app I recently filled out, I doubled clicked on the answer yes, when the questionnaire asked if I felt flattered when complimented by a stranger. Yet, after an article I’d written about experiencing body shame for my weight gain had been published, a loving and lifelong friend whose opinion I respect gently reminded me that my appearance is the least interesting part of me. I know she’s right and I’m trying to let go of my vanity and sense of inadequacy. But I can’t help but wonder, do other women battling breast cancer fear losing their hair and are they just as overcome with relief as I was when they learn that they will keep their hair too? Or maybe it’s just me. I don’t know. No one really talks about this.

When I see a woman wearing a headscarf, wig or hat pulled down over her head, her face bare of eyebrows and eyelashes, I no longer look away. I used to tell myself I was doing this out of consideration for the woman’s dignity, but I feel differently now. So I acknowledge her presence by looking directly into her eyes and smiling. It’s the best way I know how to silently say that I think she’s beautiful, courageous and strong. And even though it’s a small, silly gesture, nowadays I make a point of washing my own hair more frequently and blowing it dry and styling it. I also add mascara to my lashes and darken my eyebrows. It’s the least I can do. I’m grateful for the hair I never lost.

Adriana Ermter is an award-winning writer and editor. Her work can be read in Figure Skater Fitness, Canadian Hairdresser and IN Magazine, as well as online at 29Secrets.com, RethinkBreastCancer.ca, Popsugar.com and AmongMen.com. The former Beauty Director for FASHION and Editor-in-Chief for Salon and Childview  magazines lives in Toronto with her very spoiled cat, Trixie-Belle. You can follow Adriana on Instagram @AdrianaErmter or on Twitter @AErmter