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“In 2018, I’d just returned to Edmonton from a vacation in Asia and I was itching all over. I went to my GP and showed him how scratchy and dry my skin was. He gave me a cream and told me that it wasn’t uncommon. Edmonton is basically a desert in the winter.
I went through so many creams and the dry skin just kept spreading. I had rashes everywhere — itching and bleeding from head to toe. Erythrodermic psoriasis, the doctors called it. The skin on my hands started hardening. The skin on my feet started hardening. It got to the point where I could hardly walk. It was taking over my life.
I was an IT project manager and I loved my work, but I just couldn’t concentrate on it anymore. It’s a cerebral job, and when you’re in that much discomfort it interferes with your ability to think things through. Ultimately, I had to go on disability. I was 63 years old and I’d been looking forward to retiring, but I hated the idea of going out this way. Abandoning my projects and leaving my team in the lurch was so hard for me. But there comes a point where it’s just not viable to work anymore when you’re itching and scratching all the time, with blood running down your arms and legs. I didn’t know what I was going to do.
Finally, in 2020, it got so bad that I took myself to emergency and said I wasn’t leaving until they figured out what was going on. From there, I got in front of Dr. Chow at the University of Alberta Dermatology Clinic. She looked at my skin and said straight away: ‘This is either cutaneous T-cell lymphoma (CTCL) or something similar.’
Sure enough, the blood tests and biopsies came back showing Sézary Syndrome, a rare and aggressive subtype of CTCL. It’s not a skin disease, but an advanced cancer of the blood which happens to present in the skin.
I think when people are diagnosed with a condition like this, they’re supposed to go through a big transition, re-evaluating everything about their lives. ‘What does it all mean?’ — that sort of thing. I approached it from a much more practical and mechanical perspective, though. I wanted to know what options I had and what the data said.
Early on, one physician told me that my comorbidities limited my treatment options. This felt disheartening, and motivated my wife Laurie and me to search for a more holistic approach to my care. It brought us to a wonderful health care team, including a hematologist oncologist who has been a strong support for us. Our new team taught us that either way, my options were going to look a lot better if I got myself in shape.
Despite the pain, I decided to take up hiking. With the encouragement of our family and friends, I took our dog Django, went up to Canmore, and started doing the really high and long hikes there. I fell in love with mountaineering, and I loved that it was something I could do with Laurie and others. While I took a very tactical approach to my cancer, it wasn’t lost on me how hard it was on my family.
I threw myself into hiking further and higher each time. I did some high-altitude hikes up around 8,000 feet, and I went as far as 27 kilometres at a time. I was targeting Mount Athabasca, but the neuropathy in my feet made it impossible.
Finally, after working with my new health care team, I found something that helped me to persevere. It felt as though all of our hard work and advocacy had paid off. I returned to work and was welcomed back with open arms. I’m going to retire for real shortly, but this time it will be on my terms. It’s been four years since my diagnosis and now I’m hoping to spend my time fishing, golfing, camping, and hiking again, too. Athabasca may still be out of reach, but this year I got a group together to hike up to Lake Agnes for the Two Tea House Challenge. I said to hell with the sore feet and gave it my best go.
I wouldn’t be here to enjoy any of it if I hadn’t marched myself into that emergency room, and if I hadn’t insisted on a second — and even a third — opinion. I only wish I’d known to ask for the right tests sooner. That’s the advice I’d give anyone dealing with rashes or other symptoms that don’t make sense. Don’t let anyone dismiss you. Find your Dr. Chow.”
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