I’m betting most of you have walked into your local infusion room and noticed the sickly, bald and emaciated guy sleeping across the way; three or four bags of yellow and caramel colored IV bags sagging from the glistening stainless pole above. Most myeloma patients are lucky. Our chemo tends to be more internalized: no hair loss or telltale weight loss.
And for many, this holds true almost ’till the end. Exhaust the easier to tolerate therapy combinations, then join one or more clinical trials. At some point, the decision is made to stop treatment and spend some drug free, quality time. Others succumb to complications like pneumonia, the number one killer of long treated myeloma patients.
I reluctantly made the decision to take a more aggressive approach. Despite expert advice to the contrary, I completed not one but two, modified autologous stem cell transplants, all within four months.
I’m not the first patient to subject myself to this voluntary form of torture. But it is unusual for a late stage patient like me to give it a go. One reason why: the toll it takes on a body that has been battered by some sort of chemotherapy for over eight years.
I checked in for the first transplant at my “normal,” 152 lb weight (I was a healthy 162 lbs before I got sick). After dumping the usual water weight, I weighed in at an uber thin 147 lbs. I gained some of it back, just in time for my second go-round. As the water retention drains away, I’m down to a gaunt 141 lbs. I’ll be below 140 lbs once the last of the water works its way out of my still puffy ankles and feet.
140 lbs! I have no shoulders anymore. My chest is sunken. My arms thin; triceps practically non-existent. I’m pale and bald and crazy thin. I’m that “cancer guy” you quietly shake your head knowingly about.
There’s a real cost to the toxicity Dr. Tricot has subjected my body to the last five months. It doesn’t help that I’ve started maintenance therapy on Day 25 after both transplants. Doesn’t leave much time for me to recover, does it?
Switching gears, I’m still getting the hang of the selfie thing. Sorry this shot isn’t more clear. I must have tried to take a dozen. Worsening tremors make it hard for me to hold the phone still. I think I need to go back to my heavier, steadier Nikon digital.
Yesterday was a warm, overcast day. A cool snap was forecast for today, so it was the perfect time to swim. I’m still keeping my head above water, focusing on physical therapy exercises for my upper and lower body. Don’t let that big smile fool you–how great is it that I can share the day with Finnegan and our cats–but I’m concerned about my weight.
Pattie was at work when I took this; she isn’t crazy about the idea of me sharing pictures of my scarecrow-like bod with friends and readers. I convinced her to take a couple this morning of me to help illustrate how thin I am.
By the way, same phone taking the pictures. See what a steady hand can do?
I’m lifting light weights, doing push ups, walking, exercising in the pool and eating as much protein as my fledgling GI tract can handle. Dex breaks my muscles down, but it also gives me the get-up-and-go to feel good enough to try and reverse it all.
It isn’t easy. We went for a walk on the beach today. My legs felt like lead with each step through the sand. The idyllic setting helps me push on.
I know it will come slowly. In the meantime, my appearance makes me the poster boy for “there’s no free lunch.” I’m paying for the aggressive therapy, high toxicity choices I’ve made.
No need for kind comments about how I don’t look so bad. Or telling me to rest. I’m determined. No time for that.
I’m that cancer guy. But this isn’t my last act.
I’ll know how well it all worked in a couple of weeks. In the meantime, better grab a snack…
Feel good and keep smiling! Pat