Sunday, February 16, 2014

4 years in the books

Well, today is the 4 yr anniversary of my cancer diagnosis. Yeah! I'm still here! And still pretty healthy! I was chatting with Susan today and we were reminiscing about how we felt that day four years ago. Surprised, shocked, scared, confused.  (I describe that day in this blog post). Mostly though, I just remember feeling determined to get through it. Looking back on it, I don't think I had a real idea of how hard it would be. No one ever thinks they'll have a relapse and Hodgkins has a very high survival rate, so I guess it was reasonable for me to think that I would have a few months of chemo and be done with the whole thing. If only!  Four years later and I still have a few symptoms from the treatment that I notice every. single. day. Here's a summary of the little presents I've received that keep on giving:

  • Peripheral neuropathy. This is mostly in my feet and it isn't too bad. It's hard to describe but in summary, I feel like I have little pads of something under the balls of my feet. My feet are always cold and I get random pains through my feet frequently. I've been able to run, mountain bike, ski and swim OK so in the grand scheme of things, this isn't too bad. In the cancer world, they talk about the "new normal", meaning you have to get used to changes in your body. Ok, I get it, but I reserve the right to privately (well, maybe not so privately) still feel that the New Normal SUCKS. I want to feel my feet, point my toes and have ALL of them point and in general not feel like I'm wearing an extra layer of cotton socks under my toes all the time.
  • Low hematocrit. My oxygen transport system isn't so great. I'll get  my blood work done in the next couple of weeks and maybe things have improved a bit, but my crit has been running around 38-39. Low normal for a man is 41 so I'm not too far off - the crit threshold for getting a  red blood cell transfusion is 24. I don't normally notice this when I'm walking around but as soon as I start running or biking (which for me is about 25 days/month), I notice it. My personal 10k best time is 38:42 and I'm now running around 70 minutes at altitude. I ran the 38:42 time at sea level 25 years ago so undoubtedly some of the slowdown is just age and altitude. So these days I'd be pretty happy running a 10k in around 50 minutes. But 70 minutes? I've gotten 20 MINUTES SLOWER than a typical pace for a recreational 55 year old runner. I mean, WTF? So this part of my health really, really frustrates me. I spend a lot of time saying to myself 'you're healthy, you're doing fine, quick whining, enjoy life." But just between you and me, dear blog reader, I FUCKING HATE IT that I am running so much more slowly than my body used to be able to run. Now, if you're a 70 minute 10k runner, you're probably hating me right now. I know it's all relative and there's nothing magical about running a 40/50/60/70/80 minute 10k. This is just me being a little whiny bitch, but if not hear in my blog, where can I get these things off my chest? So I keep running (25 runs in 2014 so far) and keep hoping that my blood chemistry will improve. My times haven't significantly changed in the past year so that's something but I sure would like to have more red blood cells!
  • Pulmonary health. I can still feel the damage from the bleomycin. Some days my lungs feel totally normal and other days I feel a fair amount of tightness and phlegm in my chest. I also tend to notice my lung (dys)function after I come home to Boulder after being at a lower altitude for a few days. I think that most healthy people can go from sea level -> 5400 feet without noticing anything so the fact that I notice it is a sign to me that my lungs are still not completely normal. This is probably also contributing to my relatively slow running/biking. When your lungs aren't great at taking O2 out of the air and you don't have your fair share of red blood cells, your little mitochondria in your (muscle) cells are not going to be very happy when you exercise. 
  • Scar tissue in my neck. I had nodular scerlosing Hodgkins (the most common type) and the result of this disease includes scar tissue from malignant nodes that have been whacked by the chemotherapy. So I still experience some random pains in the left side of my neck, especially after long bike rides. Of course, any pain near where you had a tumor instantly puts you into hypochondriac mode so I have to constantly reassure myself that there are no bumps and that the twinges are not a sign of any new disease. But it's stressful - I just want both sides of my neck to be perfectly, completely normal!
Ok, that's the irritating stuff. On the plus side of the ledger, I have lots of love and happiness in my life. Lymphoma is a tricky disease and it frequently can reoccur (as I know all too well), so my medical team will always be watching out for signs of a recurrence. But for now, all signs are that I'm pretty healthy!

 Four years ago I did the math and figured that if I wanted to live to 85, I needed another 12,410 days. Well, since then, I've had 1460 days of living which I'm very thankful for. Some of them have really sucked but by and large, it's been a pretty good four years. Our immediate family is in pretty good health and we've seen family members get married, have babies and have fun in their daily lives. We've also seen our share of fellow cancer survivors run out of time and pass away. Susan and I are volunteering in a local infusion center and that work certainly gives you perspective and makes you appreciate the good things in your life. 

So as I head into year 5 of survivor-ship, I'm thankful for my health, the most excellent wife any man could ask for, two most awesome children, two also awesome stepchildren, an amazing grandchild, a loving brother, a great extended family, love, friendship and, oh yeah, some seriously fun bikes to ride.

Ok, that's the year 4 anniversary summary. More updates after my next CAT scan in a couple of weeks!