A bone marrow transplant is no small affair and part of the
treatment requires I have a full-time caregiver to assist. And I gotta tell ya,
it’s not a trivial requirement. The kinds of things I’ve had to deal with have
been nothing short of overwhelming at times. Thankfully, I’ve had a really
great support network to carry me through this very long-term process that has
been ongoing since February. Once my marrow donor was identified and I came to
Seattle, I had the great good fortune to have my two sons come be with me
full-time from their homes back East. My
older son pretty much put his life on hold and has been nothing short of
awesome. With as much time as I’ve spent inpatient and the commutes to the
hospital since going outpatient, we’ve really had some great conversations and
gotten caught up on lost time.
Having my younger son has been able to join us as well has been great as well as I've really missed the boat as he's grown and was looking forward to this rather concentrated, if not intense, period together to get to know him as an adult. He has gotten a job and tends to be more involved
in FIFA soccer than anything else, but I was hoping to engage him with the same
kind of casual conversation as well, so last Saturday I blocked some time out just
to go goof off. Rather than a movie where we really couldn’t talk, he suggested
bowling, an activity I have always enjoyed and usually am pretty good. Since it’s
not a real high-impact sport, I thought this was a great idea. My whole musculature has atrophied thanks to the steroids I've been prescribed and the extended time in the hospital bed. As an avid cyclist, I’ve been downright horrified to watch my legs puff up and then turn so emaciated. Even so, bowling didn't feel like much of a stretch.
My debut at the Acme Bowl in the lovely downtown Seattle suburb of Renton was more
of a stand-up comedy act (if I could have kept upright, that is) than any attempt at physical prowess! I picked up a
14-pound ball as usual and it felt fine. I lined up and my muscle memory kicked
in just fine. And that’s where it all ended. Muscle capability and strength weren’t quite there yet and the ball’s inertia
carried me to the floor in grand ignoble style. A second attempt was no better,
but this time the ball actually went down the lane and I got an 8! Whoo-hoo! It was
clear I wasn’t ready for this. The silver lining in this one was that there was
a family bowling next to us whose older son was an IH sarcoma (bone cancer) survivor and they
were more than just a little supportive.
Yet another example of my best intentions gone awry!
We will go bowling again, but I think it’s not going to
happen for at least another month or so…and my younger son and I will find something
else where we can spend time together or just hang out away from the hotel
room. I also had to eat my own words about the whole leukemia picture – this is
not a sprint, it’s definitely a marathon.
Let’s put this in perspective (as much for myself as for you,
apparently!)
While cancer can be – and is, in my case – a rather fast-moving disease, our bodies take time to heal. In most of our collective experiences, injuries of any kind really tend to heal pretty quickly. Even broken bones may take a matter of only a couple of months to mend and you make pretty quick strides to return to life as it was before. We have scars, some aches and pains, but we move on. Surgery seems to be almost lightning quick and they send you home, or so it seems. Sure, there are exceptions, but from what people tell me at the water cooler and other social places. I was told this morning that for every day I spent in that comfy hospital bed, I'll likely need about a week rehab to get back to my former pre-transplant athletic glory. By those calculations, it could be as much as 315 days, dear ones...315! Buckle in for serious long-term training.
While cancer can be – and is, in my case – a rather fast-moving disease, our bodies take time to heal. In most of our collective experiences, injuries of any kind really tend to heal pretty quickly. Even broken bones may take a matter of only a couple of months to mend and you make pretty quick strides to return to life as it was before. We have scars, some aches and pains, but we move on. Surgery seems to be almost lightning quick and they send you home, or so it seems. Sure, there are exceptions, but from what people tell me at the water cooler and other social places. I was told this morning that for every day I spent in that comfy hospital bed, I'll likely need about a week rehab to get back to my former pre-transplant athletic glory. By those calculations, it could be as much as 315 days, dear ones...315! Buckle in for serious long-term training.
Managing a chronic or acute illness like cancer is completely
different. Doctors look at trends and really need to be conservative, despite my pleading and cajoling to unleash me on society. Patience on the part of this here patient hasn't exactly been a virtue! As much as I wish this could just be over, the fact of
the matter is that I will have to be very aware of what my body is telling me
for the rest of my life. And that is no exaggeration. It’s not that I will be
forever sick or waiting for a secondary cancer to surface, but in a real way, I’m
starting over. I have the immune system of a baby and will have to start over
with all those shots you take your kiddos for, before being allowed to go to
pre-school or kindergarten. I’ll have to be hyper-sensitive about sun overexposure
to prevent something called GVHD (graft versus host disease) from kicking in
and making me sick. And just like the rest of us middle-aged folk, I have those
health issues as I get older. Certainly not venturing into hypochondriac territory, it’s just something I need to be more attentive, not unlike any of
you. No more cavalier health care for me, I'm afraid.
It’s a marathon. It’s constant. It’s life…and it’s me.
Speaking of marathons (for real), my congratulations to the Team in Training Utah Branch (Leukemia-LymphomaSociety) folks who completed their half-marathons and marathons this past weekend. I know
some are continuing to raise money for the LLS and I’m including a link to my
friends who have made me one of their honored heroes (something for which I did
nothing to earn any accolades but am grateful for their support!). One of the
first calls I made when I got my diagnosis was to LLS because in a year, I
want to be riding a century ride (100 miles) in the LLS support. Just 30 years ago, I
wouldn’t be alive because of leukemia. Today, thanks to their grants and
research, countless thousands of us are surviving and thriving.
 |
| From left to right, LLS 'honored heroes' Adam Uribe, myself, Kevin Robson, Christine Aguilar, Tony Aguilar and Hilary Jacobs. All of us here are survivors. All but our little guy, Ronin in the front row are running marathons to raise money for leukemia and lymphoma research. I'm in a cycling jersey, so you know where I'm focused. Hilary just finished one of her events this weekend! Please consider donating to their fundraising effort. Clicking on their name will take you to their home page where I could find one. For more information on Team In Training and to find a local affiliate, click here. |
It’s a long process. It’s uncomfortable, sometimes painful
and deadly as I can attest, but there’s something we have now we didn’t have 30
years ago: hope.
I’m dedicated through my writing to offer that hope and a
little humor in the process…and to be sure, writing has been cathartic to me. But
in the end, my make-up is to put the rubber to the road, literally, and make a
positive, tangible difference. My hope in 2014 is to volunteer with their races and in 2015 and hop on my bicycle for a 100-mile ride
fundraiser. It’s a long way off, but that’s where my mind’s eye is right now…just
not on the bowling foul line!
Stay strong, be well, and much love to you all
Music today from Carlos Santana’s album Marathon, a meditative piece called Aquamarine I came across back
in high school.
If you bike a 100 miles with one year of your transplant, or even within one year of today, I'm going to be really, really envious (but glad for you).
ReplyDeleteIt's not impossible.
One piece of advice: don't train at the level you used to. I have cost myself at least 11 weeks by overdoing it. If training used to be at 80% of capacity, do 60% of capacity. Do that until you are at or VERY close to your previous condition.
If you ignore that, I'm going to be saying, "I told you so."
If it makes you feel any better, I fell in a very inglorious manner the first time I bowled, the first time I played softball, and the first time I played soccer post-transplant.
Points well taken! Trust me, if there's anything I'm seeing in front of me right now, it's the cold hard facts that I set the bar way too high and I gotta be a bit more realistic. AML isn't merely a temporary setback.
ReplyDeleteIt's going to be a long-haul, much to my growing chagrin and exasperation with my capabilities. Thankfully, I do get stronger (albeit as you pointed out, very slowly, especially in the aerobic department and the blasted stairs!).
For now, getting out and being among the 'land of the living' is great. Real food, real people, real sights outside the hospital...all reasons to be genuinely grateful and hardly cliché, but so glad to be alive.