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I survived childhood cancer Add to ...

The doctor told me one of my chemo drugs used to be made with butterfly wings. Like that made it any better.

I was 10 when a man with an ink-stained blue tie and a clichéd flowing white lab coat whisked – really, whisking seemed to be his primary mode of transportation – into a small room in the Saskatoon Cancer Centre. He paused, looked at my parents, then with a touch of confusion, and perhaps disappointment, spoke. “You didn’t tell her?”

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They were guilty of silence. He turned to me and only me and began explaining what I had pretty much figured out: I had cancer. In the building’s lobby, the scrolling sign with red digital dots had been a reasonable clue: “… Welcome to the Saskatoon Cancer Centre … Thank you for not smoking …” My tearing, verbally paralyzed parents had added to my suspicion.

I bit my fist. A bent index finger, really. Instant tears.

His name was Dr. Kobrinsky, and he had a lot to say about non-Hodgkin’s lymphoma. It had contaminated my left tonsil, and went undetected until it and its healthy counterpart had been removed a few months earlier. Endless tonsillitis had prompted the surgery. The left tonsil’s irregular size and colour had prompted the biopsy. The results prompted six months of chemotherapy.

Dr. Kobrinsky made me spell and pronounce non-Hodgkin’s lymphoma correctly, just as he made me learn all about the tests he was going to do and the drugs he was going to inject into my body in various ways. Spinal what?

Today, I will relive that day with the same stinging tears on my cheeks. I will feel the same fear and unravel the same spool of questions. The pain of having a cone of porous bone marrow sucked out of my thigh through an incredibly thin, long needle will haunt. A phantom spinal tap needle – used to administer a cocktail once made with butterflies – will hit a nerve and I will shudder. I will feel its medicine pass through the back of my neck on its way to my brain. I will hear a faulty IV machine beep-beep-beeping away, pulling me from a drug-induced, groggy half-sleep. My body will stiffen, recalling hours of dry heaving and puking warm green bile into a blue, kidney-shaped plastic dish.

Above all, my mind will replay scenes of watching my parents watch me, gutted over what they could not control, what they could not understand, what they could shield neither me, nor my little sister, from.

But then it will all give way to a soft smile.

I will think about how fortunate I was to sit in that chair, meeting Dr. Kobrinsky for the first time all those Septembers ago and learning how a girl in Grade 6 with long, thick blond hair was going to deal with old-man cancer and baldness. Every major milestone in my life – from university to international travel to career – is directly linked to that moment.

This emotionally unavoidable ritual happens every March 14, the anniversary of my last cancer treatment. I’ve called it my Self-Proclaimed Holiday for as long as I can remember. Today marks my 21st SPH.

There is a dark beauty in cancer, one only those of us who have played host to the unwanted cells understand. We are members of an exclusive club, and we experience and understand emotions many others, for better or worse, will never get to celebrate or have to wrestle.

Take anguish. But not the question of why-why-why or the frustration of endless tests. Instead, anguish suppressed. My cancer was, by far, harder on my young parents than it was on me. The odds of surviving were wildly in my favour, but I was still a kid with cancer – a parent’s nightmare – and chemo doesn’t tickle. So on those crappy days when pity would have been pleasurable, I masked the pain to protect my parents. I knew they were worried enough (despite their own attempts to hide it from me). Why make it worse when mitigation is an option? There is romance in that, in the lengths to which people go in order to keep those in their genetic vicinity sane.

People gently touch our arms and speak in soft tones. They ask one question: “How are you doing?” Cancer club members answer with one word: “Fine.” But what we really mean is: “I have cancer. How do you think I’m doing? What kind of question is that? Get your hand off my arm. Stop talking to me in that grating nanny voice.”

That’s what we want to say, but with more swear words.

Sweet memories are equally as exclusive. Only club members know how a nurse softly whistling a lullaby in the blackness of night can soothe a pediatric ward. Only club members, regardless of age, are fully aware of the unparalleled humour, kindness, patience and knowledge radiating from cancer doctors, nurses, playroom volunteers and administrators.

Even those closest to me, the ones who were there for every IV needle, every Prednisone pill, every wobbly walk to the washroom and wheelchair ride to the hospital, will never fully understand how I felt – and still feel.

It goes both ways, though. I’ll never grasp the hellish pain thousands of cancer cells multiplying inside my rogue tonsil caused those around me, particularly my family. Their emotions were just as raw, just as real.

But only survivors get to celebrate Self-Proclaimed Holidays. This year? I’ll stand with my snowboard on top of Turner Mountain, a gem of a ski area in Montana, and think one quiet thought: How lucky I’ve been to live this life, a life graced by butterfly wings.



Carrie Tait is a reporter for The Globe and Mail’s Calgary bureau.

 

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