Yeah, yeah, YEAH! Another clean CT scan today. Wow, that's a relief. It's hard to put into words how unbelievably stressful and scary it is to face this kind of event in your life. But I guess I will try to do it. Ok, here we go:
Last month I had a few days when I felt kind of 'blah'. Just a general feeling of being off - a bit of nausea, feeling pressure in my head. Kind of like I was fighting a cold. No fevers, no night sweats, no itchy skin. In other words, no Hodgkins 'B' symptoms. But I'm worried that I have nasty tumors growing inside of me so I work up my courage, call my oncologist (who is awesome!) and ask to move up my CAT scan from late march to early march. So, we get it scheduled...
As the time of the CAT scan approaches (usually it's about a week or two out for me), my imagination starts going. And I apparently have a REALLY good imagination when it comes to thinking about all the possible ways I could be getting another recurrence. Feel a pain in the middle of your chest? Before cancer, I would not have given it a second thought, or perhaps attributed it to muscle soreness from riding my bike or swimming. With a CAT scan approaching, I immediately have visions of mediastinal tumors. Pain in your back? Most likely from doing hill repeats on your bike. But me? Nope, I'm thinking that I have a tumor in my back, similar to the Hodgkins patient I saw when I volunteered at the infusion center last week. Trouble breathing? Probably an allergy, maybe a leftover from the bleomycin toxicity? (which isn't something to sneeze at - this article indicates that bleo toxicity is not good for long term survivability). But no, I've completely convinced myself that I have several large tumors that are restricting my lung capacity. This is primarily due to me knowing a few people that have had lung problems due to thoracic (chest) cavity issues - tumors, blood clots, etc. And then I start thinking about all the ways my life is going to change with a bad diagnosis - lots more treatments, lots of bad side effects, higher likelihood of an early death from this damn disease. So by the morning of the procedure, I'm basically a mess. I feel like I'm going to puke, I have diarrhea (stress induced hyper-bowel, thank you very much) and I feel like either not saying anything to any body or start screaming at everything and everybody. And then the test. Which goes fine.
And then - The Wait.....
The wait sucks. You watch your phone, wanting it to ring so you can get the news and move forward. And wanting it not to ring, because you're afraid of what the answer is. So you decide to do some work. Which of course is close to impossible, because YOUR FUCKING LIFE IS HANGING IN THE BALANCE, WAITING FOR THE GODDAMN PHONE TO RING!
If you've followed the blog, you know that this is not a new condition for me. Back in 2012, I got all worked up, as I describe here. So you would think that with every passing CAT scan I would mellow out. But somehow, I seem to always engineer some set of ailments that put me on edge.
So I get the news, and it is awesomely awesome. And yes, that's a phrase that's OK to use because I just GOT MY LIFE BACK!!!! So after a few seconds of wild fist pumping, I calm down enough to chat with my oncologist and we talk about my symptoms that made me move up the CAT scan. When you have a stem cell transplant, you reboot your immune system, with either your own or some donor's. In my case, it was my own stem cells, so I now have a 3 year old immune system. And it's not quite perfect yet. So although I don't get sick much, I do have periods where I feel like I'm fighting something. Which I probably am. With my original immune system, I would never notice these battles. But with the Geo V2 system, it's still kind of immature and I can feel it when it's working. At least, that's the prevailing theory. I hope over time that these periodic, sub-clinical symptoms will go away and I will finally be able to relax in the period building up to my CAT scan.
But to end on a happy note - it looks like I'm still pretty healthy. More yeahs! It is so awesome not to be sick and have a good chance of living a long time. It's really fantastic, because I have had plenty of opportunities over the last four years to see things end differently for friends I've lost to cancer. So I'm so very grateful for pretty good health and the love and support of lots of people.
That's my update for today - health, happiness and joy. And now, off to write some code, ride my bike and hug my most awesome wife! TTFN - I'll probably do another post at the end of the month when I have my 3 year old immune system birthday party.
Sunday, February 16, 2014
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!
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!