I was invited to join the Board of Trustees of the Alberta Cancer Foundation in 2006. Like all of us, I had had friends and family who’ve experienced cancer. Some of them lost their lives to it. At the time, I saw joining the Alberta Cancer Foundation as a new opportunity to give back to my community. I had no idea how involved I would become.
In February 2007, I was skiing at Lake Louise and I took a fall. In the days after, I began to experience dizzy spells and a loss of balance. After a particularly bad dizzy spell in my office, an ambulance took me to Foothills Hospital. The dizziness was a consequence of vertigo triggered by the fall. But some blood work the doctors ordered at the time found something else. I had abnormally high levels of white blood cells and lymphocytes.
I was told that I had a form of leukemia called Chronic Lymphocytic Leukemia (CLL). And I suppose it made for an interesting story – “Alberta Cancer Foundation trustee diagnosed with cancer.” The irony wasn’t lost on me then and it still isn’t.
CLL is a cancer of the blood and bone marrow. Doctors call it chronic because CLL typically progresses more slowly than other forms of leukemia. The name comes from the cells affected by the disease – a group of white blood cells, called lymphocytes, that help your body fight infection.
There’s a feeling of helplessness that comes with a cancer diagnosis, but perhaps especially so in my case. I had two questions for my medical team right away: “How long do I have?” and “What are we going to do about it?”
The answers I received were, “not sure,” and “nothing for now.” Instead, the plan was watch and wait.
Patients with early stage CLL typically don’t receive treatment because early treatment doesn’t extend their lives. Instead, doctors reserve treatment for when the leukemia progresses, calling this “watchful waiting.” And that’s where I found myself. For a control freak like me, it was challenging.
The watch-and-wait strategy exacerbated my feeling of helplessness. Every ache, pain and bump seemed ominous. I visited the Tom Baker Cancer Centre for blood tests every two or three months, each time wondering if I’d need treatment. In September 2009, blood tests revealed low platelets, indicating that my disease had entered a more aggressive phase. I should have guessed. I had started experiencing symptoms of advancing CLL, including fatigue, night sweats and swollen lymph nodes.
I was almost glad that my cancer was advancing. Starting active treatment meant I was doing something, it was “game on.” But treatment came with drama. In my first session of chemo, I had an allergic reaction to a drug called Rituximab. The staff administering the chemo called a “code 66” triggering the hospital’s rapid response team, who worked quickly to stabilize my condition. I didn’t realize how serious the situation had been until a chaplain appeared at my bedside later that day; he asked me if I wanted to talk. But, by adjusting the infusion rate of the drug, I’ve since received it without incident.
Initially, I had six rounds of chemotherapy on a three-week cycle. This was followed by a “maintenance” infusion of Rituximab on a quarterly basis. It’s been a hassle, but so far it’s keeping the cancer at bay and I’m in complete remission.
For me, having cancer has been a strangely positive experience. My approach to life has changed. I focus on the positive things around me. While I can’t change my diagnosis, I can control what I think about and how I approach life. My professional life as a lawyer hasn’t changed and I have tremendously supportive partners and clients. Despite some initial difficulty, my wife and kids coped too. So did my parents and siblings, even though my sister was diagnosed with colon cancer shortly after my diagnosis. (She’s healthy now, too.) As a parent, I hope I never understand what my mother and father went through.
I owe my life to my family and my wonderful network of friends.
I never forget I’m a cancer patient. I don’t think that anyone in my shoes does. Leaving the nest of the Tom Baker was hard, as having treatment gave me a sense of control. I can’t say enough about the nurses who treated me. Their support, professionalism and gentleness meant so much. And I have unconditional faith in my hematologist/oncologist, Dr. Andrew Daly.
But I don’t want you to think that our experience was all rosy. One doctor’s bedside manner wasn’t as compassionate as the rest of the care team’s – he actually left my wife in tears. In spite of that, my experience with the Tom Baker has been overwhelmingly positive.
At first, joining the Alberta Cancer Foundation was just another way to give back and maybe add a line to my resumé. Now the Alberta Cancer Foundation’s goal of a cancer-free future is the cause of my life. I’ll never pass up an opportunity to advocate for our board or for cancer patients. Call me an active stakeholder.
We live in a great province and I’m lucky to live in one of the best cities in the world. But Calgary is the only city in Canada that doesn’t have a stand-alone cancer centre. Alberta can and must be a world leader in cancer research, prevention and care. However, we have to take bold steps now to achieve that vision. This year, 16,000 Albertans will hear the words “you have cancer.” Alberta is the can-do province with vast resources, wealth, talent and a desire to lead. It’s time to rise to our highest ideals and build a cutting-edge, cancer-free future in Alberta.
I know we’ll meet the challenge.
I am John Osler, cancer patient and Chairman of the Alberta Cancer Foundation. This is what I am doing in my cancer survivorship.
Photo by Brian Buchsdruecker