Monday, March 18, 2013

Precautions, Pre-release, and Presumption

Under normal circumstances, I would be concerned if the doctor shrugged his shoulders and said, “I don’t know,” but today when nary a one could isolate the reason for my fevers, I wasn’t dismayed. That’s because the rationale made sense. “We think it’s probably just your bone marrow re-starting.” Most leukemia patients are feverish as a result of one thing or another following the decimation of the immune system. A barrage of nasty sounding antibiotic, antiviral, anti-nausea, anti-fungal, anti-mold, and other broad spectrum anti-drugs are dispatched to fight off invaders in the immune system’s absence, so the actual reason for the fever is often hard to tell. Blood cultures are taken at the onset of the fever, but in my case, nothing grew. The inflammation in my intestines healed, and I still had nothing in the way of lesions, rashes, or other nastiness that the Infections Disease people could analyze. And to top it all off my neutrophil count was a whopping 894 today! Because 500 is the benchmark for discharge, the first three doctors I saw today were assuming was going home today.

But there’s more to this rodeo than just the neutrophil count. I got my first round of Methotextrate chemotherapy this afternoon intrathecally (i.e. directly into the spinal cord). It wasn’t nearly as bad as it sounded and I was given some happy juice which made the experience mercifully short and practically painless. If it gives everyone (myself included) the warm fuzzy to ensure the leukemia stays away from my cerebrospinal fluid and the brain, I’m on board with the inconvenience, believe me!
I also got a spin in the courtesy van over to the dental clinic where I was curtly told that I didn’t confirm the appointment. Um, yes, that’s correct because I didn’t make the appointment. But…we play the game because a dental consult is all that stands between me and my marrow transplant package being transmitted for approval to Washington, DC. I was looking forward to going and looking at the dentist saying with impunity, “No, I didn’t floss! They wouldn’t let me!” Nyah (emphasis, mine). So, I got to go back in the courtesy van back to the hospital, but at least I got to see the sunshine again. Spring Fever has officially arrived, can you tell?

It looks like a time line is starting to gel on the end game here.  The Induction Round of chemotherapy is normally 28 days, but I will be discharged tomorrow, nearly a week early (and the crowd roars). How nice it will be not to be peeing in a cup, not being tied to a pole, not being awakened so someone can take my vitals, take my blood, listen to the sounds of my guts, my lungs, me say, ‘ah,’ … and … I get to sleep in my own bed that doesn’t whir up and down and wheel through the halls! Oh, and I get to eat when, what, and if I want. Oh, you do all that stuff already? Lucky stiff! Next thing you tell me you can pretty much wear what you want.
So, I will be back in my own digs for the week.  From this point on, the search for a suitable and willing bone marrow donor is in earnest.  Before I go to Seattle to make this happen, I will need another four days of ‘consolidation’ chemotherapy, which is inpatient here locally.  That could happen as early as next Monday. Thankfully, the consolidation round isn’t as arduous as the induction is, so my hematologist suggested that at the end of the four days, provided everything is as smooth as this round, I could be turned right around for more home time.  It’s not party time yet as I’ll have to mask up once I leave my condo and won’t be in crowded places any time soon. But hey, I can get out. I could take a drive or take a walk around the block!
Once the consolidation round is done and I’ve finished my back-breakers, it’s a waiting game for my donor. It could happen quickly or it might take a month or two. I mentioned last night that many American matches originate from Germany, so I figure that once that 20-something über-strong, blond and handsome German donor has bravely stepped up to the plate, it’s time to play ball. I should point out that even the fraüs in Deutschland are pretty über-strong, so I can’t lose! Nein! The ball game is in Seattle and takes a total of 114 days from that point.
This really is an endurance event. I feel very fortunate to have some good genetics that have kept me these 50 years, but I feel very good, too, that I take the time as part of my daily routine to exercise and eat well.  That I’m leaving the hospital a week early is testament to the fact that good physical condition plays a huge part in my recovery.  You don’t need to be a gym rat or some fitness fanatic. If you’re able to commit to taking good care of yourself with regular strenuous exercise several times a week and make some the obvious changes in your diet, you will be far ahead of most people and it could quite literally be the difference between surviving a round of chemotherapy or not – I didn’t make that up, it’s what doctors have told me about why I’m doing so well. My sport of choice is long-distance cycling because I enjoy it, so find an activity you enjoy and then make one small change to your diet and see what a difference it makes. What can that hurt?  Do what you like and like what you eat (just don’t overdo it). How hard is that?
OK…I’m looking forward to my last night in this room. It’s been real.
Be well, stay strong, much love to you all!