One year later, and some updates
A year ago today, I had the surprise of my life. Thanks to Charlie Park, you can relive the outpouring of support I described in my first post about the diagnosis on the site mathowielove (along with this explanation of it). I get a lot of email from people with similar health issues and from friends and family and thought I should post an update and recap how the last year has gone.
A year in 30 seconds
Last November feels both like it was just yesterday and it was ten years ago in my mind because so much has happened. Immediately after getting out of the hospital and starting on the mend from the worst flu I'd had in years, it was just over a month later I got some good news that my tumor was shrinking thanks to a drug regimen. My other vitals were lagging behind but by March of 2010, most of my hormone levels were approaching normal and I was beginning to feel better. By Summer, I'd gotten my first not-so-great prognosis that the tumor had stalled in size and was sitting at 50% of the original size, with my hormones still bouncing back into the lower limits of normal. By mid-Summer, I started a course of human growth hormones to gain some energy but I also cut my steroid dosage in half, so the effect of each counteracted and I've felt about the same.
Overall, after the initial joy of the tumor shrinking significantly, the rest of the time has been somewhat frustrating, as I've had to adjust to new harsh drugs and then wait for my body to react and then level off with each change. Monitoring the health effects has gone a bit slower than I'd like, with measurements taken every 3-4 months to assess my progress.
For the past several years I've been tracking my physical activity on my bike (miles ridden, heart rates, wattage pushed into my pedals) and racing off and on, and I've noticed not too much improvement this year in terms of my physical performance. My wattage numbers are up slightly, but so is my weight (significantly) so it's basically a wash and I'm about as slow as I was before the tumor diagnosis. Overall, I don't quite feel "normal" yet in terms of physical performance for a dude my age/fitness/size/etc.
The future
In a few weeks I'm doing a full day of testing, including another MRI to see where the tumor size stands, some thyroid testing to see how that is working, and some hormone tests. I'll probably have results by mid-December and I'm hoping we'll see continued stabilization/shrinkage of the tumor (growth would make surgery necessary) and figure out what is keeping my hormone levels still a bit low.
It goes without saying I've been very lucky so far and couldn't have done so well without the support of my wonderful family and friends, and for that support I thank everyone that has said and done nice things over the past year. It's really meant a lot and helped me out immensely.