A wiser fella than myself once said…
Sorry for the long layoff. The bar got me pretty good this time but, as usual, life’s a series of strikes and gutters. Dude abides. Another caucasian, Gary. That ought to keep me focused enough to catch y’all up.
So, after acing what’s supposedly the hardest chemo regimen in existence, along with a “stem cell rescue” I was feeling pretty good. During the entire procedure I trained daily, kept working, and while I certainly wasn’t close to 100% managed to keep my life going without much of a glitch.
Post transplant, I felt good; strong. Knee rehab and training were going well, recovery seemed imminent, and I was scheduled to have my central line removed before most people would be out of the hospital. I’d already starting booking my regular flights back and forth to LA for work. Then my bone marrow refused to make blood.
If that sounds bad, well, I reckon it is. After all, it leaves out the “rescue” part of “stem cell rescue”. However, it’s not unheard of. It took my staff of doctors aback, given how well I’d handled everything, and even more so since my transplant was autologous. “Occasionally these things just take time,” they said. Testing commenced.
With no answers from the initial tests, I was told to stop taking all supplements and “eat like a kid”. It seemed possible that young stem cell production couldn’t handle the type of high-density nutrition that helps us as we age. Kids, after all, don’t handle dense nutrition as well as adults, likely due to developing digestive system and the fact that hormones are firing on all cylinders during development, the opposite of what happens once we mature. We tend to crave what we need, which might explain why your kid wants Captain Crunch instead of a greens smoothie. Their body just needs energy (calories) and has plenty of developing hormonal action to tell it how it should behave.
While slightly dubious of the logic, since I’m old and my declining hormones can use all the nutrients they can get, I was quick to acknowledge the getting my stem cells to graft superseded all other needs my body might have. The kid diet was on. Goodbye raw super foods. Hello, cereal, yogurt, orange juice and Spaghetti-Os
Initially, it didn’t help and pretty quickly everything was crashing. My red blood cells, which weren’t developing but also not falling quickly, began to disappear post transfusion. My effective hematocrit levels began falling below 20%, making even short trips to the bathroom or kitchen peg my heart rate like I was sprinting up Mt. Everest. When I had transfusions, it felt as though my body was melting for a day or two afterwards. The blood wouldn’t hold and I’d be right back to empty. I finally had to take time off of work, suspend all exercise suspended other than daily breathing work, and just try to relax. Then I got sick.
This most likely wasn’t due to diet. It was suspected that the reason for the non-graft of stem cells was some type of virus infiltrating my system. We couldn’t find it, but we also never found the virus I had after my forth Hyper/CVAD round. It’s probably the same one. This time, it took a while for symptoms to hit. When they did, it was mainly in my lungs, which added an inability to breath well to lack of hematocrit. As you might imagine, this combination sort of sucked.
Of course things can always to worse. For motivation, I began watching stuff like Little Dieter Needs To Fly and its narrative successor, Rescue Dawn. Compared to Dieter Dengler’s situation, mine was a piece of cake. At least I could eat the food of my choice (admittedly it was hard to eat) and come and go as well as my body could handle it. Also, no one shot at me for fun of shoved bamboo under my fingernails. While things weren’t a barrel of laughs, they weren’t so bad relatively.
I wasn’t on many drugs, only two that were prophylactic in nature for post-transplant patients, so I started eliminating them. One, dapsone, which was prescribed to ward off pneumonia and because its less invasive to bone marrow, seemed to be the ‘crit culprit. When I stopped taking my red cells stopped crashing. After a while, my blood counts began to stabilize, and even rise a tiny bit. Perhaps the kid diet is working after all.
And that’s were I am right now, stable-ish with low blood counts, eaten’ like a kid and still looking for answers. The symptoms of the illness are slowly subsiding and energy is coming back. Work is back on, and blog updates will follow as I catch up. Walking up one flight of stairs still pegs my heart rate but, at least, it slows at rest. Rehab work is back on, though it’s now much more painful since scar tissue formed during my down time. I’m super skinny from my atrophy, though still less emaciated than Christian Bail was playing Dieter Dengler. Gaining and losing muscle it easy. If an actor can do it for a role, you’ll get no complaints from me. It’s just another body transformation to go through.
The bad part is that damned bar, still getting’ the better of me and we don’t know why this is happening. It seems like half the doctors in Utah have been consulted about my case. We’ll get to the bottom of it. In the mean time, I’m getting’ used to a life that’s slower and less active than I’m used to. Somebody’s got to take it easy for all us sinners. But isn’t that the way this whole durned human comedy keeps perpetuatin’ itself? Down through the generations, westward the wagons, across the sands of time until—aw, look at me. I’m ramblin’ again.
Well, that about wraps her all up. I hope you folks enjoyed yourselves. Catch ya later on down the trail.
pic: my third rest in about a quarter mile of “hiking”. takin’ it easy for all us sinners. below, a skinny and non-skinny christian bail. with proper motivation, changing your body is, relative to some things, easy.