Throwing My Hands Up

On September 14, 2001, my mom called me at 2:46 p.m. I knew something was wrong simply because it was 14 minutes before free long-distance started in Ontario. She wasn't her normal self, but I tried to be mine. I asked how she was. Instead of answering she asked if my best friend Rebecca was home and told me to get her in the room, her voice shaking. I told her she was, trying to be confused by the question but terrified because I wasn't. Rebecca eventually agreed with questioning laughter that faded out as soon as she saw the tears welling in my eyes. I'd had surgery to remove a lump in my neck two weeks earlier but had almost managed to forget that the results were still to come.

When I got back on the phone, the tears escaped my eyelids and slid their way down my face, like slugs leaving trails of goo. Mom told me to sit down. I said I was. I wasn't. She reassured me that “everything will be OK.” She was crying. Will be OK. One day, but not now. She told me it was Hodgkin's lymphoma. I recognized the words but I couldn't make sense of them. She told me I'd need chemotherapy. I forced myself to believe that they use chemotherapy for other things, not just cancer, this isn't cancer, I don't have cancer.

“Is that cancer?” I asked.

When she said yes, everything slowed, to the moment just before stopping. I wanted it to stop, reverse, erase it all, but it kept creeping forward and I had to go with it. With my mouth open, my hand slid from my forehead to cover my face, fingers apart, wanting to rip everything up - the news, that day, the future - and turn everything into a dream. Rebecca stood beside me having no idea what I had just learned, not knowing whether to run away and hide or to laugh so she just stood there, frozen.

When I got off the phone I couldn't make a noise. I sat on the couch, and Rebecca followed, awaiting some signal to tell her what to do. Finally I came up with the words to explain. She didn't' know what to say so she stared at her hands as my eyes darted around the room. Suddenly her sobs broke the silence.

What threw me off was that I felt absolutely fine. I didn't need chemotherapy; it's for sickly old men and women, dentures strewn about the room, leaky bladders, fully aware that their end is just around the corner. A few days later, sitting in front of a woman who called herself an oncologist, I was told that without chemotherapy, I'd die within two years.

I moved home to Ontario for treatment, leaving behind school, my friends and the life I had fallen in love with. My hometown, Almonte, reminds me entirely of high school, since I, like most other teenage residents of the town, bolted as soon as I got my diploma. Most of my friends, save for a few acquaintances, had done the same. I had moved to Victoria for university, drawn in by its surrounding mountains and oceans, and an irresistible lifestyle that mumbles “whatever, dude.” Though I knew returning to Almonte wouldn't do much for my social life, except obliterate it almost entirely, I wanted nothing more than Mom and Dad.

The next eight months were filled with routine visits to the Ottawa Cancer Centre, where I was surrounded by people at least 40 years older than I who stared at me sympathetically. Hodgkin's lymphoma is the rarer of two cancers of the lymphatic system, the other, creatively enough, being non-Hodgkin's lymphoma. Because of lymphoma's tendency to strike resilient young people between 15 and 30, the common treatment is intensive chemotherapy. Doctors can pound us with intravenous chemotherapy, every two weeks, that is more aggressive than that given to older people – both in terms of dosage and frequency. This means a higher cure rate, but also harsher side effects.

My hair started falling out a few days before Halloween, just after my second chemo. The unusual number of strands that had been wedged between my fingers and been effortlessly pulled from my head shocked me. My family was yammering away in the room behind me but I sat there, staring at the hair, silently. I didn't tell any of them about this new development for days. Talking forces ideas into reality and that's the last place I wanted that handful of hair.

I could hide some side effects of chemotherapy, like the nausea, the weakened immune system and the ripped-up stomach lining. It's harder to hide thinning hair, and it wasn't until that happened that I realized the extent of what was going on. I was so angry. I didn't deserve this. I was never a smoker, I'd never lived beside an asbestos plant and I'd only been around for 19 years, that's not much time for things to go wrong. I felt sorry for myself. “This is too much,” I wrote in my journal. “I miss living.”

I felt miserable but was getting myself nowhere. I was living. I didn't want to roll around in agony, feeling cheated since my hair was falling out; no one else I knew dreaded showers like I did. I much preferred having shedding contests with my cat, Kitso. So long as I'm living, choices are always there, I decided, even if I'm staring threats to my existence in the eye. Laugh because you want to, I told myself, because you can.

A few days later, when I pulled my t-shirt on over my head, I laughed as I looked in the mirror to find that a bouquet of hairs from my head was now sprouting up from the neck of my shirt. I walked downstairs to my mom in the kitchen, feigning concern.

“Well… the hair is coming out from my head,” I told her cautiously. “But I really don't know what's up with this chest hair.”

She smiled that way she smiles when she knows she probably shouldn't but can't help it. Like when my dad tells a dirty joke or I burp at the dinner table. She wishes it never happened, but it has, so why not laugh?

Over the months, my immune system became useless. Chemo targets fast-growing cells, like hair cells and white blood cells - the gladiators of the immune system. Pamphlets told me to avoid sick people, avoid crowds, revert to cross-stitching in my spare time and keep those dentures clean! My days consisted of sleeping until noon, reading the newspaper, writing emails and watching TV. I started having one-sided conversations with Kitso that eventually progressed into attempted singing duets. I was so bored. My head was empty.

“I want excitement and happiness and laughter,” I wrote to myself, “and that feeling you get that words just can't describe when all you can do is throw your hands up to the sunshine and wonder, what the hell did I do to deserve this? But in the exact opposite way that I wonder the same thing right now.”

In December, I met Rachael, a 22-year-old with a brain tumour. She was the only person who could say to me, “I know how you feel” and mean it. She described her cancer in an e-mail to me, explaining that the doctors gave her a 1 in 20 chance of surviving five years. With my own 9 in 10 survival rate, I was completely baffled. She followed her explanation with, "Oh well, we'll see how things go." Despite her unfortunate prognosis, she assured me that she would one day marry her boyfriend. I don't know if it was denial or hope, or if those two things are the same, but I agreed that she would.

By the time March rolled around, five months into chemo, my lungs had been damaged by one of the chemo drugs and my immune system had weakened considerably. I did my best to listen to the tiny voice, fading at this point, that assured everything would be normal again if I just hung on. Thankfully, it was right.

I got the good news on the morning of my 11th chemo when I went in for a routine visit with my oncologist. I'd had a CT scan the week before, but wasn't expecting the results yet. He told me that he thought he had seen them.

“I think it was good news,” he told me like it was no big deal, oblivious to the fact that my heart had just about stopped. “But I'm not sure. I'll go make a call.”

I sat dumbfounded in the tiny room. My heart raced, as my right knee shook. The oncologist bounded back in the door.

“I was right!” he said, as if he expected me to present him with an award. “The scan shows absolutely no cancer. Everything's gone.”

My knee went still. I stared at him, emotionless, for a moment. I put my shaking hands to my forehead and looked at the fluorescent, buzzing lights. My eyes watered. My head, or maybe just my brain, felt like it was floating. If I could add one word to the English language, it would be one that accurately describes the feeling of smiling until your face hurts and your cheeks crack.

Despite the good news, I had to keep up with chemotherapy to make sure that all the cancer was gone, even the microscopic cells that CT scanners can't see. The drugs continued to ravage my body, and my dwindling immune system brought my ego down with it. By mid-March, I was fed up. I decided I'd visit a friend in Montreal to see my favourite band, Hot Water Music, despite my doctor's warnings about crowds. I just wanted to up and have fun. The morning after the show, I woke up with a fever and felt entirely dazed. I drove home as I checked my temperature with the thermometer that took permanent residency in the cell phone pocket of my backpack. I was pushing the 40 degree mark.

For immune system-suppressed cancer patients, fevers are the body's way of fighting infection. While healthy bodies increase the supply of white blood cells to fight off the baddies, chemo kids don't have this ability so the body heats itself up in an effort to kill the invaders. When heating doesn't work, these minor infections can become deadly.

I went to the emergency room and after various tests I was told that no one knew what it was. I was given antibiotics, told to befriend Tylenol and instructed to stay at home unless the problem persisted. I was back in that emergency room four more times that week since my fever, as punk rock as I had been in high school, refused to do what it was told.

I remember waking up one morning at 6 a.m. that week, shivering with chills. I knew that the chills would only give way to a fever so I bundled up and battened down the hatches. I felt like throwing up so I made my way to the bathroom. I was too dizzy and short of breath to stand so I lay by the toilet. I was completely hairless and my arms, like dead sticks, were scrawny and bruised from a week's worth of IVs and blood tests. The cold linoleum floor offered a refreshing refuge when the fevers fluxed but my handmade afghan provided feeble resistance to the chills. The only words that kept running through my head were, “These are the complications that kill you.” I was so worn out, so tired, frustrated, empty. I didn't care that the cancer was gone; I just wanted to get on with my life. Two weeks later, and still almost two months before I would finish with chemotherapy, I got an e-mail Rachael's boyfriend. He told me that she had died. I immediately thought of the wedding they were supposed to have and I stared at the computer screen, wishing that I hadn't seen it coming. I found out later that she spent the last two weeks of her life blind, as cancer took over her entire body.

Her death really shook me, and I truly needed that. I'd been feeling sorry for myself. Her diagnosis and prognosis were just as random as mine. Her dance with cancer ended just as randomly as mine. Only mine ended with a pirouette, arms up, a grand ta-da and the crowd cheered. Meanwhile she tripped, stumbled off the dance floor and the crowd wept. The odds had always been in my favour. I promised myself that night that I would never feel sorry for myself so long as there is someone who longs to be in my shoes.

I finished chemotherapy on May 22, 2002, eight months and eight days after my diagnosis, and took a solo train ride across the country in August back to Victoria. I still see an oncologist every few months, but for the past two years she's been telling me I'm boring. Every now and then I get these pangs of sheer excitement because I realize I'm happy, healthy and living the life I missed so badly that year. It usually happens when I'm outside on a windy day and my hair is flapping around madly, getting stuck in my mouth and nose and I can't help but scream inside. It's like that feeling you get that words just can't describe when all you can do is throw your hands up to the sunshine and wonder, what the hell did I do to deserve this?

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