Mick McKellar Update--Day +43
In the bright blue light from my afternoon window, I still feel a chill. The temperatures are moderate (in the 50's) and wind is light. Yet, I find even the mid-fifties very chilly, thanks to a skin rash on about 85% of my body.
Doctors in the dermatology section did a skin biopsy (resection) today and are trying to determine if it is a drug reaction to the Bactrim or a manifestation of GVHD. We're praying it's the Bactrim, which although serious, will go away -- now that I have stopped taking it. If it's GVHD, then the condition is life threatening. At least it does not itch.
Slather and pray
Think folks should touch more? Try slathering a thick white cream on every inch of your body where nasty looking red bumps and welts have appeared. I really cannot do it alone...so Marian gets to help. More family fun!
If it is GVHD, then it is possible my skin could start falling off in chunks...at which point Marian calls 911. Sounds like a old-fashioned James Cameron B movie: The Man Whose Skin Fell Off. I want to write the screen play.
I’ll tell you what else was odd...sitting undressed in a dermatologist's office and having a cameraman drop by to snap photos of my skin rash -- using the same type of camera they use on CSI shows to shoot photos of crime scenes and (gulp!) dead bodies. Creepy, that was...
Doctor vs. Doctor
An interesting aspect of working with so many specialists, is that they don't always agree on what I should be doing (taking, not taking) for my present conditions. Hematology rules, but I will be going back to dermatology to have my biopsy suture removed from my back. Hematology prescribed the cream and oral prednisone, but said not to start either. Dermatology ordered me to start the cream, but not the prednisone. The allergy doctor still thinks it is not the Bactrim and is working on a different desensitization process, but he demurs to Hematology. I sometimes feel like a multi-player video game and secretly wish I could just reboot...
Last night, I learned I should not have stopped my anti-nausea medicine...enough said about that.
Lucid dreams
I am taking Ambien to sleep (because of the cough) and have experienced some very lucid dreams. It is an odd and disquieting experience. Often I am sleeping and yet still aware of the bed, my position, of every physical move -- and still I am simultaneously experiencing vivid dreams. If I get up to answer nature's call, I move about fine, but still wear my dream like a technicolor sombrero. I can even stay asleep and have a coughing fit.
Somehow, it just works, and I get a night's sleep out of the deal. However, I will be ecstatic to get off the pills, when I can once again lie down without coughing through the night.
Remembering when
I mentioned that I slept sitting up for many summers as a child. I can also remember a similar feeling of being awake and asleep at the same time. I always thought it was because a part of my brain had to stay awake so I would not fall over and start coughing. Perhaps it lead to my day dreaming habit. I'm dreaming and I am unresponsive, but not completely asleep.
I could roam about the house and watch the family, watching TV or knitting (my Mom was a knitter-extraordinaire), or picking on each other (my brothers) -- just with my mind. Childhood imagination is a wonderful thing, and I went some wonderful places with it. They were solitary trips, but I could dream of anywhere in the world, and the vivid colorful images would rush in, and I was there -- at least for the moment.
Was I imagining it all? Was God helping out a solitary soul who needed out of a less than perfect shell for awhile? I don’t know. But it helped save my sanity. Mostly, I loved adventures in the highlands of Scotland and Ireland, not to mention all the beautiful places we could visit with the Viewmaster viewer and in the pages of my grandpa's National Geographic magazines (he let me read them all).
I wonder where my next dream will take me now? One thing is for certain, in those dreams...I am not ill. What a blessing!
A vocal blessing tonight
Once again young Mennonite men and women gathered in our dining area to sing for the Transplant house residents. From 6:00 to 6:30 PM, I was transported back to my youth when my family would have impromptu "reunions" and suddenly my grandparent’s small yard held 150 brothers, cousins, uncles, aunts and other kin. It seemed everyone sang or played an instrument, and there was hours of Canadian blue grass and some hymn singing...many hymns just like those tonight.
The Mennonites sang "Closer Walk with Thee" (A Capella) tonight and I was in tears. What a beautiful way to close a difficult day!
Thank you all for your good thoughts and prayers -- and for the e-mail, cards, calls, and messages. I know I repeat it again and again, but I cannot stress the warmth and love that radiates from your communications.
God bless you all, and good night.
Mick