I flipped a coin into the air and said, “heads I live, tails I die.”
A tad dramatic, I admit. But I had just returned from the hospital where my doctor had told me I had a 50/50 shot of surviving leukemia. I figured I’d see what luck had to say about it.
A few short weeks earlier, dandruff had been my biggest health concern. I was 27 years old, and cancer had never entered my mind. Still, the symptoms were there.
In 2007, I was working in Toronto as a project coordinator for an international charity. I was by no means a health nut, but I took care of myself. I biked to and from work. I ate a vegetarian diet, didn’t smoke and did my best to avoid fast food joints. I loved to hike and competed in eight-hour races that involved hiking, canoeing and mountain biking through the wildernesses of Ontario.
My performance at one of those races that summer should have been my first clue that something wasn’t quite right. The event took place near Ottawa, and I had teamed up with two of my brothers, Dan and Damien. But throughout the day, I kept falling behind, completely winded.
Embarrassed, I climbed a small hill to find my teammates once again waiting for me to catch up. I’m really out of shape! I thought. After an abysmal showing at the race, I returned to civilization. The weather turned cold and I put my bike away for the season, promising to make more of an effort to get in shape over the winter.
However, what I didn’t know in that moment was that me dragging my butt had less to do with my workout regimen and more to do with the fact that my oxygen-carrying red blood cells were dangerously low.
Thoughts of my poor athletic showing quickly faded as I returned to the grind of deadlines and overflowing inboxes. But it didn’t take long for another sign of the microscopic mayhem raging inside me to show up — this time in the form of an annoying blurriness in my left eye.
Too much time in front of the computer screen, I rationalized, shrugging it off.
By Christmas, however, the blurriness hadn’t improved, and I finally got around to booking an appointment with my optometrist. Nothing a few eyedrops or a new prescription couldn’t fix, I figured.
At her office, Dr. Tang shone a light into my eyes to see if she could suss out the source of the problem. It didn’t take her long. “The insides of your eyeballs are haemorrhaging,” she explained.
Well, that can’t be good.
Concerned it might be diabetes, Dr. Tang suggested I go see my family doctor to have some blood work done. Annoyingness gave way to genuine concern.
A few days after having blood drawn, the phone in my cubicle at work rang. “I need to see you,” Dr. Merker said when I picked up. “We need to talk about these results.” My mouth went dry. He briefly explained that my white blood cell counts were through the roof and my reds ridiculously low. Suddenly, all those urgent deadlines and emails didn’t seem so important.
Moving from concerned to scared out of my mind, I mumbled something to my boss about needing to duck out for a bit, hopped on a bus and made my way to my family doctor’s office. Please don’t be cancer, please don’t be cancer, please don’t be cancer. I spent the entire ride repeating this prayer in my head.
Dr. Merker met me in his office and handed me a printout of my blood results. It might as well have been written in Klingon. Thankfully, he walked me through it.
He explained that the number of white blood cells in a healthy adult male should be somewhere between 4,000 and 10,000 per microlitre. Mine? 484,000. Crap.
Although we’d need a bone marrow biopsy to confirm a diagnosis, there was little doubt in Dr. Merker’s mind:
I had leukemia.
“You’ve got a journey ahead of you,” he told me.
I didn’t return to the office after my visit with Dr. Merker. Nor did I call or visit anyone. Instead, I caught a bus home. Along the way, I stared out the window, marvelling at how the world could keep spinning when mine had just come to a screeching halt.
I cried, utterly shattered.
Not long after, I found myself sitting in the cancer ward at Brampton Civic Hospital, waiting my turn to have a bone marrow biopsy to confirm Dr. Merker’s suspicions.
I didn’t want to be there. Though calm, cool and collected on the outside, I was a wreck on the inside. Besides my boss, I still hadn’t told anybody about the likely cancer. No friends. No family. The pin was pulled, but I wanted all the information I could get before hurling this grenade at my loved ones.
A nurse called my name. I got up and followed her to one of the patient rooms. I was terrified of what lay ahead but also relieved to have the wheels finally in motion. The suspense was killing me nearly as much as the cancer.
Let me be clear: bone marrow biopsies suck. The doctor uses an auger-like hand tool to dig into your pelvic bone and snap off tiny chunk of bone and marrow. Not pleasant. A while later, an oncologist came bustling into the room, my chart in hand.
“Relax with a capital R,” he told me. Relax. Riiiiiiiiiiight.
He went on to explain. Although there was no question I had leukemia, there was some good news: the form of the disease I had was extremely treatable. Chronic myelogenous leukemia, they called it — CML for short.
Unlike other types of leukemia, he continued, CML could typically be treated with a drug called Gleevec. Taken orally once or twice daily, the wonder pill wouldn’t cure the cancer. But it could keep it in check, preventing the mutated chromosomes from mass-producing cancerous white blood cells.
It remained to be seen if the medication would work on me, but for the first time in a while, I let myself breathe.
The next few weeks went by in a blur. A seven-day hospital stay in Brampton so they could monitor me as the meds lowered my white blood cells. Emotional emails, phone calls and visits with friends and family. Getting my records and care transferred to Princess Margaret Hospital in Toronto. Returning to work.
Slowly but surely, I started to adapt to my new normal, cautiously optimistic that the Gleevec glue would keep the bloody dam from bursting. Unfortunately, the universe wasn’t done being a jerk to me.
“Rare as hell,” Dr. Lipton said as he reviewed the results of my latest bone marrow biopsy. In the short time since being told to relax, my leukemia had gotten real aggressive, real quick — entering unexpectedly into what my oncologist at Princess Margaret Hospital called the “blast crisis” phase.
By this point, most of the medical mumbo-jumbo I’d been bombarded with had flown right over my head. But I figured anything with a name like “blast crisis” couldn’t be a good thing.
By the look on his face, Dr. Lipton was as stunned as I was at the latest development. He told me that in twenty years, he’d only ever seen something like this happen once before.
Mama always told me I was special.
The Gleevec was no longer considered a viable long-term treatment option for me. Instead, I would need to blitzkrieg my body with months of powerful chemotherapy and radiation in an effort to pound the disease into remission. But even that wouldn’t keep the monster at bay. No, I’d need to rid myself of my defective bone marrow entirely and replace it through a risky stem cell transplant — assuming, of course, they could even find me a donor.
I worked up enough saliva in my mouth to croak out a question. “What are my odds?”
Dr. Lipton didn’t sugar-coat it. “Forty to fifty per cent.”
Hoo boy.
I returned home from my appointment shell-shocked. Forty to fifty per cent. A coin toss, really. With that in mind, I grabbed a quarter from the desk in my basement office.
“Heads I live, tails I die …” I caught the quarter and pressed it under my sweaty palm onto the back of my other hand. I held my breath and took a peek.
Heads. Phew.
Although thrilled to have Lady Luck on my side, the relief I felt was short-lived. That’s because I knew it would take a lot more than a fortunate coin flip to get through this obstacle. Indeed, standing before this enormous challenge, I felt puny, outmatched and ill-equipped.
However, what I failed to recognize at the time was that, in many ways, I had actually been preparing for this journey my whole life. And if I really thought about it, I had more tools in my toolbox than I gave myself credit for.
For starters, this wasn’t the first sticky situation I found myself in. But to tell that story, we need to go way back.
Next: Chapter 2 — The slip-up: What a puddle of puke taught me about asking for help
