Sunday, February 27, 2011

one year survivor. thoughts and reflections

The 16th of February was my one year survivor anniversary.  I was waiting to see how the PET scan turned out before I blogged about this. But now that we have that in our rear view mirror, I wanted to write a bit about getting to the one year mark. So here are some insights and feelings:
  • First and foremost, I'm actually healthier than I was a year ago. Last year at this time I had a bunch of nodes in my neck and chest that had malignant cells growing in them. As of now, I have no nodes that are obviously malignant, given the diagnostic technologies available. Statistically, I'd have to say that  I probably still have bad cells in my body. But way less than last year at this time. That comparison makes the whole year seem worthwhile. I'm fighting hard to get my body to a place where I'm healthy and will be around for a long time. The fact that I'm heading in a positive direction makes all the work over the last year seem worthwhile.
  • It's been the scariest year of my life. I guess that's pretty obvious but still worth noting. The other thing about being scared - it sucks. And another thing - it's a lot of work and at some point, kind of boring and unproductive. I still have periods where I worry about dying and feel guilty about maybe not being here for Susan and the kids. But I mostly don't feel scared - the emotional energy of staying scared is just too much work and really doesn't get you anywhere. So maybe I'm just an emotionally lazy person and that helps me process things without going to pieces. I don't know.
  • Chemo can be hard on your body. Here's the list of stuff that's gone wrong this year;
    • Bleomycin toxicity in July. Put me in the hospital for 4 days. Maybe some long term problems but in the short term, pulmonary function has returned to normal. At one point I had trouble climbing two flights of stairs and for a period of 2-3 weeks I had trouble talking. Talking apparently requires a non-trivial amount of pulmonary function. And try waking up in the middle of night because you can't breathe well enough to stay asleep. Breathing is a really, really nice thing to do and to do effortlessly. That little session in July really gave me a bunch of compassion for anyone with bad asthma or any lung disease. Not something I would wish on anyone.
    • Fractured T7 vertebrae.  Happened in early September. Probably from the prednisone I took to help my lungs recover that weakened my bones and some yard work I was doing lifting heavy bags over my head. Took a few months to heal and I still have some mild pain in my back if I bend over without loosening up my back. But functionally my back is in pretty good shape and I don't have any significant pain.
    • Drugs that change your personality are scary. When I was on high doses of prednisone I was definitely a bit postal. Susan did a great job of helping me manage it and she was pretty saintly about not letting my little outbursts rock her world too much. We have a friend who has been on prednisone for some health issues and we got some good coaching from him and his wife on how to manage the 'roid rage. But it's a weird and troubling thing to think that a little pill you take in the morning changes the way you feel and the way  you interact with other people. That was troubling and something I'm not anxious to repeat.
    • Blood clot under my collarbone near my left shoulder. This has been going on since August. I was on a blood thinner for a while in the fall but have stopped once I started the current round of chemo. This has prevented me from swimming since the motion of doing freestyle causes the vein under my collabone to get pinched and my left arm swells and my left hand turns a scary shade of purple. I'll probably have some more work done on this issue once I'm doing with all the chemo. There are some enzymes that can be injected directly to a site to dissolve a clot that I'd like to try since I would like to have a fully functional left arm at some point.
    • Reduced fitness. Most people look me on a day to day basis and are amazed at how much energy I have. But for those of my friends that see me running or biking it's really obvious how much function I've lost over the last year. I'd like to be able to work out hard and enjoy the benefits of being fitter. Again, this is on the list of things to accomplish after I'm done with chemo.
    • General chemo ickiness. I've said it before and I'll say it again. I hate being constipated. If you're not constipated, this seems like a whiny and trivial issue. But if you've gone around for a week with a feeling that there's a bowling bowl lodged in your GI tract you know that this is really an unpleasant feeling.
  • Ok, enough of the gruesome details on how my body has been beaten up over the last year. To change pace a bit, here's a good thing. I have a lot of love in my life. It's kind of embarrassing, really. I've gotten so much support from friends and family over the last year. It's been absolutely great and a huge source of strength for me. But at some point it gets to be a bit overwhelming and it's hard not to feel unworthy of all the love and support. One day last month I was in the cancer center and a 20-something guy was in the waiting room. Recently moved into town, there for the first day of chemo and he was alone. Not one friend or family in town to come sit with him as he started a seven hour chemo session, the first day of a 2 year treatment plan he was on. I felt really bad for him. Chatted him up a bit and tried to give him support but it just struck home to me how lucky I am to have all of you in my life. So thanks again for all the positive energy and support. It has been the biggest single thing that's kept me (somewhat) sane and functional this year.
  • Having cancer and getting treated is a slow process. I've never had an illness that moves so slowly and that takes so long to treat. A whole year of stuff and we're not done yet. And of course, during that year, your life goes on. You still go to work, shop, clean the house, exercise, pay bills, do  home improvements, whatever. I'll be in the middle of some mundane activity and be reminded of the fact that I've got some cells in me that could kill me and that I'm fighting them. But with every other disease I've had, you get sick, get treated or rest on your own, get better, get on with life. I had the mumps when I was in the sixth grade and I was home for a week. I think that was the longest I'd been sick prior to last February. So the timing on the whole thing is pretty weird and emotionally kind of draining. It's kind of a slow, long grind that I wish we would just be done with. But apparently not for a while yet.
  • Spirituality. Lots of people that go through cancer search out some sort of spiritual comfort, usually through some sort of organized religion. I haven't felt that need. I think my two biggest source of spiritual comfort have been family and being active outdoors. Playing ping-pong with Kyle, chatting with Caitlyn on the phone, waking up in the middle of the night and feeling Susan lying next to me, skyping with my brother in England. Those are the important things. And moving around in the world, on my bike, running, walking. Last week we did a night mountain bike ride. Working to climb a hill, working to keep up with people on the flats, flowing down the hills with the headlights and taillights of your friends around you. All of these are my spiritual moments. I guess everyone gets their strength and centering from different places. It's probably one of the most personal things you do and for me, it hasn't happened in some building called a church, but rather in the little moments you spend with people you care about.
  • Things that seem important at work aren't life threatening. Our business has had some ups and downs the past year and that's been hard on everyone. But our work doesn't directly have life or death consequences. So with some immediate life and death consequences to consider, I've gained a perspective on work. Yup, it's really important that we do things at work that allow us to take home paychecks that provide for our families. And it would be a big bonus if being at work was fun or at least tolerable. But when I see people in the business world get all dialed up about some topic, it really doesn't phase me much. In the grand scheme of things, most people can find another job if they lose the current one they have and  things will work out. That perspective has probably allowed me to keep a more even keel than I might have had prior to having this illness. An interesting side effect of the journey, I guess.
  • I really like living. Another trite, obvious statement. But maybe not so obvious given that there are suicides every day. If there's one thing that this illness has pointed out to me, it's that I really enjoy being here. Yeah, like everybody I have parts of my life that are irritating, boring, frustrating, etc. But when you think about your mortality it really, really makes you want to be here for a long time. At least, that's been my reaction. I hope that in the end, this will be my biggest weapon in this fight I'm in. I have so many things to do, to learn, to experience in this existence. I'm not even close to being done with everything and I hope that strength of will can overcome any crazy metabolic shit that's going on inside of me.
So that's the quick summary of what I was feeling as my one year anniversary came and went. Nothing earth shaking I guess, but meaningful for me.

Well, off to bed to get read for a day of diagnostics tomorrow. I hope you have a good week and I'll post some more after we get our training session on Tuesday night on doing a stem cell transplant procedure as an out patient.


  1. Thanks for the post Dad! I know I am not alone in telling you that I have a lot left I want to live and experience with you too! So keep that will-to-live weapon strong and ready and together we will conquer this metabolic shit and live to have more moments all together!

  2. Will to live - check. Kicking some metabolic shit - check! Live long to pester (and love) offspring - check, check, check!!! :)

  3. So how exactly is predisone George different than regular George? :D

  4. you'll see the difference the next time I'm on prednisone and close to you on a bicycle :)