B is the word.

By , on June 23, 2012

C Word


And now for something completely different, a man with three birthdays. In my case, October 29, May 26, and now June 21. It feels like the bodies must be piling up somewhere though.

Day Zero went like this:

  • 5:30AM: wake early to start pre-TBI hydration at home via mobile pump
  • 8AM: drive Mike to SCCA to start his second day of apheresis
  • 9AM: breakfast, morning meds
  • 10:30AM: SCCA Radiation Oncology for Total Body Irradiation
  • 11:30AM: SCCA Lab for blood draw
  • 11:45AM: start 2-hour infusion of Tacrolimus, an immunosuppression drug, via mobile pump
  • Noon: Lunch at SCCA cafe
  • 1:45PM start transplant of stem cells harvested from Mike the day before (while Mike is down the hall producing more today)
  • 2:30PM visit from transplant team, led by Dr. Frederick Appelbaum
  • 4:30PM start transplant of stem cells harvested that day
  • 7PM Finish transplant, go home
  • 10PM start another 2-hour infusion of Tacrolimus
  • midnight: brush teeth, go to bed

This all went OK, though as the day wore on I went from feeling merely tired and nauseous to profoundly fatigued and sick. I had to use a wheelchair to get out of the building. But I was able to make it up the steps into our house before collapsing on our beloved couch.

They had hoped that Mike could produce 5M stem cells on the first day, leaving the second day for collection for research. Alas he only did 3M the first day, but was up for 1.8 the second, so 4.8M total, which is “just fine” per the docs. So way to go, big guy. Not bad for almost-63. I think he was a little taken aback by the high praise he got from the SCCA nurses for his “killer veins”. “Yeah, we’re always checking out people’s veins, it’s kinda fun,” one said. Hmm.

For this TBI I got to lie down on a bench rather than stand up like last time. This was good, because I don’t think I could have stood up for the whole thing. They had a amusing 60s soundtrack playing: “Blowing In the Wind”, “It Aint Me”, “RESPECT”, and lastly “I Wanna Go Home”. Keep the old patients entertained I guess.

The visit from Dr Appelbaum was interesting. He is the Executive Director of SCCA but still walks the floors. I think he enjoys chatting with Eve since he can pull out all the medical-research jargon and she mostly gets it. At one point he looked at the stem cell bag hanging on the hook with a look that seemed to say “I can’t believe that this stuff we just made up really works.”

Sitting here now on Day One (OK, actually late on Day Two now), the next phase starts where we wait for the new system to engraft, and I try to stay out of the hospital. I really do feel like complete crap, “but that’s normal at this stage.” Anyway nothing to do but wait and watch soccer.

 

 



1 Comment to “Day One, Take Two”

  1. Bonnie Butler says:

    Thank you for keeping us posted. You are in our thoughts, and prayers.

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