Day +8
With God’s grace, things continue to go well. I am very fortunate that the only significant thing my body has been bugging me with is mucusitis, where thick, ropy mucus forms in my mouth and results in me having to spit all day and night. This is caused by the radiation and chemo and had disrupted my sleep for several nights. I would wake up every 15-30 minutes feeling like I had to spit. Last night, the nurses introduced me to The Cocktail - a mix of Benadryl and Atavan that knocked me out good. Benadryl also dries out mucus, and Atavan is a muscle relaxant. The combination of these two made it so that I slept without spitting for 2-hour stretches, which was fantastic! (The initial high from The Cocktail was something else too - Reena watched in amusement as I fought through it to finish a proposal I was working on for a customer 
)
The mucusitis also makes it so that I’m not able to really eat anything. My weight started dropping (6 lbs in one day!), so the docs put me on IV food (1100 calories, 75g of protein, some carbs, plus a bag of lipids), and now I’m back above my admit weight. My stomach is still hungry, though (the IV food goes straight into my bloodstream), but the inside of my mouth is not in good shape, so I only manage the occasional fruit or soup to avoid my stomach from completely shrinking.
I’ve been having trouble getting out of bed in the morning, partially because my sleep is interrupted so frequently by bathroom breaks or nurses, and partially just because my body needs rest. So I’ve been waking up past noon every day, struggling to fight off some weakness, eventually showering, and then walking 0.5-1 mile around the floor to prevent deconditioning. Thereafter, I am able to sit down and work for a few hours until about 11pm or midnight, when Reena and I go to sleep.
Overall, the nurses are amazed at how well I’m doing. Many of them comment that I look too healthy to be in a hospital; others simply scatter when I plow down the halls at top speed for my daily “walk”. However, the toughest days are supposedly still ahead, so we’re bracing for more pain until engraftment.
Engraftment should happen on day 12 or later, after which graft-versus-host disease symptoms are likely to set in. Keep in mind that some GVHD is a good thing, because it also means that there is a graft-versus-leukemia (GVL) effect. GVHD can affect one’s skin, GI tract, or liver (less commonly). I haven’t had diarrhea or nausea yet but fully expect to in the coming days.
Once my counts are rising from my new immune system (THANK YOU, MY DONOR!!!!) and I can eat by mouth again, I will be released on all counts. Hopefully that will be just in time for my real birthday (10/22)!
Thanks and love to you all for your undying support,
Sameer
October 12th, 2007 at 8:06 am
This is definately amazing… i can’t wait to have our bone marrow drive and help Bevin out… I hate that you’e feeling so much pain but am happy in a sense because you’ll be cured soon!!!!!! keep on writing!!!
October 12th, 2007 at 10:46 am
Amazing, indeed! Sameer, your story is riveting! Good luck in dealing with the expected obstacles coming in the next few days … I’m sure you’ll do great … I think you should consider writing a book/movie on your experience. You can’t make this story up…..
October 15th, 2007 at 11:41 am
Good luck Sameer! I really hope that you feel better soon
I will continue praying for you and Vinay.
October 15th, 2007 at 2:43 pm
I’m so glad to hear that things are going well.
Good luck with the next few days and I hope you get to celebrate your birthday at home, happy and healthy!
You and Vinay are in my prayers.
October 16th, 2007 at 8:08 am
Sameer I’m so glad to hear you are recovering so well. Please give me love to Reena and your parents. I’m confident you will be able to celebrate your birthday and recovery soon.