The Gift That Keeps on Giving
I naively thought that after going through BCG, “the gold standard treatment” for bladder cancer, that I’d get the green light that the tumors were gone and I could start living a normal life. Naive is the operative word here. What I wasn’t told was that bladder cancer recurs about 80% of the time within five years. That’s why it’s so expensive to treat, in Canada, about $250,000 annually. I started having treatments every three months and they just kept coming back, the gift that keeps on giving.
I was lucky all of my treatments were covered by our Medicare plan here in Canada, or else I wouldn’t be writing this today. Treatments involved an overnight stay in the hospital, in a semi-private room. I can only imagine what the cost would have been in the States.
Discussing other options
When it became obvious that the BCG wasn’t working for me, we started to discuss other options. At the time, surgery wasn’t one of them. It just didn’t cross my mind that I’d have to undergo a major procedure, I was simply going to beat this thing. One of the treatments discussed had been used extensively in Europe, specifically the Netherlands I believe. It involved the drug mitomycin and electric pulse therapy on the lower abdomen near the bladder.
The pulse would cause the cells to open to absorb the drug, making it more effective. There were a number of problems: it wasn’t covered by my insurance, I would have to fly to Europe for six weeks, which actually wouldn’t have been half bad, and it would cost $25,000 dollars. Take into consideration the airfare, food and accommodation costs, and it was something I couldn’t even consider.
Some pretty bleak days
So we continued with the standard treatment. This went on for seven years. I went through every range of emotion you can imagine from hope when they said things looked good, to disappointment when they said my friends had returned. Depression between treatments, anger that it wouldn’t go away. There were some pretty bleak days. But throughout it all, I was committed to fighting as hard as I could, so if a had a bad day, I’d get up the next morning and tell myself today was going to be a better day, and you know what - it was.
A regular cycling routine
My family supported me every day with encouraging phone calls and constant good wishes. I also kept up a regular cycling routine. I rode my road bike 4-5 times per week anywhere from 30-60 kilometers a day, 20-30 miles. Cycling turned into my meditation. Alone on my bike with just the sound of the wind in my ears and the cadence of my pedaling and I was in heaven. I also took part in a fundraising effort for kids cancer treatment called the Tour for Kids. Every summer, 500 of my closest friends would get together and ride 100 kilometers, or 60 miles a day for four days to raise money for the kids. It was my way of giving back.
But as time wore on, my body was changing, and when I started bleeding again, we entered a new arena for a different kind of fight.
Have your views towards bladder removal changed since you were diagnosed?