Parlez-Vous Cancer?

Do you remember what it feels like to be 19 or 20? Were you carefree? Did you feel full of vim and vigor? Well, I’m right there with you for 19, but 20 played out a little differently for me.

At 19, I was about to experience a whole new level of independence and to fulfill a dream I’d had for three years – a long time when you’re a teenager. After years of planning, which began in the twelfth grade, I was finally moving to the South of France to study for a year. In my second year of university, I applied to the exchange program, was one of eight students accepted, and started saving money like a squirrel saving nuts for the winter. The next school year, shortly before my 20th birthday, I set out for Nice, where I had two and a half of the best months of my life.

That’s when the trip was cut short and my life took a major shift. At the age of 20, while still living in Nice, I was diagnosed with acute promyelocytic leukemia. In the course of a week, everything I knew about my life changed.

Pre-Diagnosis: An Empathetic Start

The patient experience, particularly with such a serious condition, is always challenging. However, I was fortunate that the majority of my interactions with my various care teams were positive, and there were many times when I experienced empathy from my healthcare providers. My first true experience of patient empathy occurred before I received my diagnosis.

After experiencing some mysterious and extensive bruising – 26 new bruises in 4 days, to be exact – I decided to visit the closest walk-in clinic, where the doctor who saw me immediately sent me for blood work nearby. The lab technician who took my blood had a daughter living in Canada at the time, and I think with her in mind, he took pity on me. After seeing the results of my bleeding time test (about three minutes for a normal person to stop bleeding from a tiny cut on the earlobe – 37 minutes for me), he personally drove the rest of my blood to Monaco (around two and a half hours round trip) to ensure that my tests would be processed as a rush. He asked me to come back that evening for my results.

It seems that empathy was not in short supply that day. When I returned to the lab that night, I was surprised to learn that I would be getting my results from the doctor I’d seen at the walk-in clinic, despite the fact that the clinic had closed an hour before. My new friend the lab tech confirmed that the doctor had stayed open for me. This compassionate gesture gave me the first indication that there was actually something seriously wrong – if there was one thing I knew about businesses in France, it was that staying open late was never an option. The next clue was the doctor speaking to me in English. And, of course, there were the words he said. He told me that he “couldn’t let me walk around on the street for fear I might just drop dead” before sending me off to the nearest hospital, armed with a request for more tests to be performed on the young canadienne – and quick.

 Diagnosis and the Return to Canada

As it turned out, the nearest hospital didn’t have the necessary resources to figure out what precisely was wrong with me, and several hours into my stay there, I was bundled into an ambulance and sent to a second hospital. This turned out to be a blessing in disguise, as the second hospital put me in a semi-private room. As the other bed was unoccupied, my roommate was allowed to stay over with me – something I could never imagine happening in Canada.

I got the diagnosis the following day at noon. The conversation was extremely brief and to the point. I was alone, as my roommate had gone back to our apartment to gather some things for me. The doctor came in and told me, in French, “We got your test results back. It’s not good. You have leukemia. We must start treatment as soon as possible.” I faltered for a moment before asking if I could call my mom first. The doctor consented and I whipped out my cell phone, waking my mother out of a dead sleep at 6 a.m. Eastern Time. Finally, after a 20-minute conversation with the doctor, my mom agreed to come to France. I repeated the process with my dad, and while I waited for my parents to arrive, I was moved into a reverse isolation chamber, got my first blood transfusion, and started the non-chemo portion of my treatment.

In my isolation, I also had the dubious honor of bringing my insurance company up to speed. It was this experience, not the actual diagnosis, that first brought me to a level of hysteria. I explained that I had leukemia, and the agent on the other end of the line, clearly needing more sensitivity training, responded: “And? Was this a pre-existing condition?” After unleashing a series of expletives, I informed my insurer that I would no longer be contacting them myself, and that someone else would be speaking to them on my behalf moving forward. I cried myself to sleep that night, for the first time and last time.

I stayed in France for eight days following my diagnosis, where I was stabilized (through large amounts of blood and platelet transfusions) until I was ready to fly. My parents arrived, and a bilingual air ambulance team was there soon after to take me to Princess Margaret Hospital in Toronto. During these eight days, I became accustomed to my situation in the reverse isolation chamber, where I was restricted to two visitors per day, who had to pass through an airlock and don a cap, gown, gloves, mask, and booties just to see me. It didn’t hurt that I also had access to a Wi-Fi-enabled laptop (a big deal in 2008) and restaurant-quality food, such as paella and rabbit stew. The doctors explained that the reverse isolation was to keep me safe and prevent infections, the laptop was to keep me entertained and up to date, and the food was to nourish my body and help my recovery.

Imagine my surprise, then, when I arrived at Princess Margaret Hospital to find my new digs had only one door for people – in street clothes, no less – to come and go as they pleased, myself included. In place of the laptop was a computer with dial-up internet down the hall, and the food was what one would expect from hospital food – in the best of times, there only to sustain you; while undergoing severe nausea from chemo, inedible. Understandably, I panicked. It took a couple of days and a lot of explanation on the differences in protocols for me to adjust – but at least I could now mostly understand the terms my doctors were using.

Treatment and Recovery

Then I began chemo, and once again, everything changed. The treatment took nearly everything out of me and resulted in several complications. The purpose driving me also changed. While my previous purpose had been getting to France, my new focus was now almost exclusively on staying alive. My only other goals were getting out of the hospital, where I was stir crazy when I felt well enough to be awake, and getting down the hall to the computer – a mission that would take half an hour to orchestrate, as I could barely walk, and one that often failed, as it never occurred to me to be wheeled there in a wheelchair.

My care was managed by a pair of doctors, one responsible for my hospital treatment and the other for my outpatient care. Both were wonderful, and they each showed their compassion in different ways. When I found out that I would be able to spend Christmas at home, my inpatient doctor, knowing how badly I wanted a Christmas tree, wrote a note for my mother stating, “While this young lady should avoid doing any gardening, she may certainly have a real Christmas tree.” My outpatient doctor chose to empathize with his patients in a different way; he voluntarily underwent a bone marrow aspiration, a physical experience best compared to that of mild electrocution. Thanks to these experiences, I felt entirely safe in their care.

Outside of Princess Margaret, I also paid a few trips to the emergency room, and those experiences were far less ideal. The ER nurses were overburdened with patients and didn’t have the time or desire to treat me with any more sympathy or delicacy than they would anyone else. At the time, I was angry and felt that the ER nurses were abusive harpies, but looking back, I find myself empathizing with them more. Although they treated me with impatience, they did still do their jobs, and it was unfair of me to expect the same standard of care I had been accustomed to as an inpatient.

Eventually, determination (and modern medicine) paid off, and I was relatively lucky. My ordeal was fairly short-lived, and by April of 2009, I was in full remission.

Back to Reality: Purpose After Illness

My purpose changed again, but it’s not what one would expect, as it’s not particularly grand. I will admit that my illness has had some influence on where I’ve ended up. Here I am, working in a health-related field, with empathy for patients always on my mind – but I digress. My purpose after beating cancer and having my life turned upside down was simply “being fine.” I’d had to drop out of school, and after finishing treatment, I couldn’t walk for more than one minute without sitting down to rest, so I spent most of my energy on a slow recovery. But I soon re-enrolled in school, and I worked just about full time as a waitress that summer.

I still struggle with how much “being fine” defines me. It is almost always the second thing out of my mouth after I tell people I had cancer, which I usually refer to only as “being sick,” as if it’s no big deal. It’s not that I’m in denial: I really am fully recovered. My oncologist has even dismissed me from his practice, and my health is no longer in jeopardy. Still, I feel different. “I had cancer” often pops up in the back of my mind.

Additionally, I’ve found that I have a very interesting perspective on the Canadian healthcare system, having seen first hand how quickly things can move when they need to, but also how much waiting is usually involved, at any level – from spending five hours in a waiting room for a seven-minute appointment, to waiting for several months before seeing a specialist. I believe in the system we have here in Canada because it worked for me, but there’s a part of me that wonders if everything would have gone as smoothly and quickly had I been home when I was diagnosed. Would I have booked an appointment with my family doctor? Would some of the exceptional steps taken in France to ensure my rapid diagnosis have taken place here?

I’ve also seen how critical it is to have private insurance, even in the land of universal healthcare – the tab on my $1000-a-day treatment was not covered by my provincial insurance. And I’m now intimately more familiar with the many inefficiencies of that provincial insurance itself, like the fact that my health card somehow expires more often than every five years, and the fact that the government doesn’t monitor things like when a health card is being used in a hospital. At times, all this knowledge makes me feel jaded and older than my years. But at the same time, it also excites me knowing that there is still an industry that has so much room for change and improvement.

Finally, there’s the million-dollar question – whether, after my illness, I have a greater purpose in life or not. I don’t think that I really do: age 20 was a bit outside of my early formative years, but I also wasn’t firmly established. I didn’t feel inspired to make some kind of change in my life the same way someone older might have. Though I’ve strived to never let cancer define me, I think that the empathy I received as a patient has become a defining factor in my life.

the author

Sam Smith-Moskal

Sam Smith-Moskal is a project coordinator at Idea Couture.