Thursday, March 14, 2013

The "R" Word

Today started out in the best of all possible ways.  First, I actually got more than three consecutive hours of sleep. Second, after all the routine that makes up my first moments, I nodded off and was awakened by someone moving in front of the light and putting a Starbuck’s cup in front me with the caption, “Stay Positive” on it. I was out of it, so I’m not sure who it was (although I have my suspicions!) My breakfast was not to my liking because it was all stuff I don’t normally eat and even though I’m not picky (most of the time), cream of wheat should at least have a consistency that wouldn’t insult Oliver Twist. The nurse brought me some corn flakes and all was well again. I intentionally waded into my day because this experience is all boredom punctuated by exclamation points. So, here’s the big news.

The hematologist with whom I interface most is brilliant, chooses rather academic words to describe things where a simpler one might do, and has a wonderful way of explaining the mysteries of the human body to me. She doesn’t talk down to me and she doesn’t mince words, but you can’t break it down into something more palatable than, “Good news! I wanted to share your lab report with you to show you that you’re in remission.” I looked at the lab report and couldn’t pick it out, but then she highlighted it with her red pen: “no morphologic or flow cytometric evidence of residual acute myeloid leukemia.” There it was in writing – I’m officially in remission.

That doesn’t mean this is over. Far from it. I have another week here as long as everything continues to move along smoothly. After that, we wait for a bone marrow donor. Because I have had many, many people ready to roll up their sleeves for blood or for marrow donations, I’ll again direct anyone interested to this web site. Knowing what I know now, I think I’d have put myself on the registry, because it’s really a painless thing. Essentially how it works is that that each of us has 10 HLA (human leukocyte antigen) markers. If a match comes up, the donor gets a drug that boosts their production of leukocytes (white blood cells) and the day of their donation, they get to sit in a chair for a few hours while their blood is processed, leukocytes stripped out and from there sent to a centrifuge where the stem cells are harvested. They then get their blood back much like a dialysis procedure. Those stem cells then are infused into my blood stream and my immune system adopts the donor’s. Hopefully there’s a little bit of a war that knocks out what few cells of mine are hanging on and when I leave, everything about my blood has the possibility of changing.

A couple of guys who had been to Seattle for their own transplants came by and shared their story with me and one of them had his sister for a donor.  When he returned to Salt Lake, his blood type showed to be completely different AND as a post-menopausal woman! He turned to her and said, “So, does this mean, I’m gonna get boobs, now?” Not missing a beat, she said, “Honey, I paid for these, you can’t have ‘em!”

As you can tell, we’re far from over on this odyssey, but a good milestone is a welcome one, to be sure. We’ve had a few rather boring days this week, so medically I haven’t had much to report and my musings tended to be rather philosophical. After all, dances with lucidity in the wee hours of the morning tend to be more coherent when you’re not auditioning for one of those frontier flicks where you more closely resemble the unconscious guy, illuminated by a fire and sweat rolling down his face. His dedicated wife is wiping his brow and we’re all rooting for him to make it through the night. I hadn’t had one of those nights and no fireplace!

Some time yesterday, I started to envision that romantic version, but in reality, the thing at the edge of my mind was this: if I officially spike a fever (>100.3), the take a blood culture and they can’t draw it from my existing PICC line. So, we danced around that number most of the day until I finally waved the white flag and told the nurse I was feverish.  For the rest of the day and night, it was a matter of keeping warm during the onset, kicking the covers off when it came down, and just trying to find a comfortable place where I wasn’t sticking to the sheets because of my feverish sweats.  Lovely image there, huh? I poked my arm out of the covers long enough for the nurse to poke me and draw blood into these little bottles that look like cocktails from the airlines. V-8 anyone? The upside of all this was that by the end of the day, they did give me more blood, platelets and antibiotics and when they were done, they disconnected my buddy and I slept for the most consecutive hours since being admitted. I’m still a bit whooped. I still have my hair although I have this headache that only flares when I cough, so I’m half expecting to cough one day and my hair to come out en masse a la static electricity. That would make a great picture!

Reminder for all of you wonderful people to get your entries in for the official OMT Fabulous People-Food Pairing Sweepstakes. I’m so very much looking forward to spending time with you when this is all done.

Be well, stay strong, much love to you all!