Aggie -
I've gotten two "Nothing we can do" letters over the past decade - for HCV/cirrhosis rather than cancer. Although these are different conditions with differing treatments, there are some important similarities - including brutal drug regimens, muscle loss, exhaustion, and often loss of confidence. At one point I was diagnosed Stage IV - the nice letter has it in bold, red ink.
I am one of the fortunate ones. The first treatment with a fast-tracked set of drugs failed with the treatment now known to have had serious, long-term side effects. There was about four years between the first and second treatments - the latter was successful. They don't use the term "remission" but they also don't use "cured" either.
Within a week of starting the first treatment, everything in my body was different. And my days varied between being hit by a car, hit by a bus, and hit by a train. Not only did I experience muscle loss and weight gain - whadda combo! - but I also had nerve demyelination which would make me think on mild days that I was peeing down my legs and on bad days like my legs were on fire.
But I chose not to stop cycling.
Doesn't make me any better or smarter or tougher than anyone else. Maybe just more stubborn.
I kept riding locally. Even when it burned.
And I did three tours between the first and second treatments.
The first was just a 10-day loop in Grand Teton and Yellowstone parks. For me that is ridiculously little, but it wasn't easy. Between being out of shape and weak I had to huff and puff and - yes - I was embarrassed when I shouldn't have been. But it was still some time out touring and, definitely, healing. The second was a trip halfway across the country - from the coast of Oregon back to Wyoming. Actually, I had planned to go all the way, but realized that the tank was past empty. Finally, in 2016, I did ride across the U.S. - not a terribly hard route, but 3400 miles.
When I showed up for my second treatment in the fall of 2016, the specialist said that she had not seen anyone start treatment as healthy as I was, but admitted that my tests did indicate that I was Stage IV. Again, I may have simply been fortunate. But I also do believe that the touring helped both my physical and mental health.
I would urge you to do as much or as little cycling as you are comfortable with. Maybe a teech past the comfort zone? I would also hope that you are not as self-conscious as I was. When I was climbing up White Pass in Washington back in 2016 I had to stop 50 times, at least. And it's not that tough of a climb. I found myself thinking, "They'll see me stopping all the time." But then I realized that, whether they were going east or west, they'd only see me once. And anyhoo, why should it matter?
Wishing you all the best. - Jama
