Day 50 ! Condition Report

Halfway there, and a weekend off! No clinic visit until Tuesday am.

Finally starting to feel well and lucid enough to get back to this blog.


   We sure do miss Beaufort, and seeing all our friends, but our digs here are ok, and conveniently located to the clinic, a pharmacy, and groceries. Anne has set up three bird feeders in the pine trees across the 10' stretch of lawn between our little porch and the strip of woods this side of the security fence.  She got an app for her ipad that is a bird book with audio of the bird calls.  There are some different species found up here in the Piedmont than down on the coast.

Mr. Cardinal

    We are still making daily trips to the Duke Adult Bone Marrow Clinic for blood labs and transfusions as needed. This last week I was treated to an endoscopy with two biopsies, and a skin biopsy on my hand.
I am moulting. Shedding my skin. Like after a bad sunburn when you peel. But it is all over. The first to go were the callouses on fingertips and palms, and on the soles of my feet. It reveals brand new baby skin, soft and pink, and highly susceptible to sunburn, like a month old baby would be. I walk as much as I can, and put in at least a mile/day on one of theses rigs at the clinic when doing laps around the unit become too painful.  1000 steps in about 15 minutes on a good day., and no pressure on my baby feet.

 Walking barefoot on the beach is not in the cards for a while.  Our dermatologist has hooked us up with a battery of lotions and unguents, some containing steroids and cortisoids. More Chemicals,sigh.

    All in all I am feeling pretty good most of the day. Still needing long naps, but thankfully taste and smell are slowly returning. Eating has been strictly mechanical, and fraught with complications because the skin on the  inside of my alimentary canal is being replaced too.  It is fascinating to watch the medicos tinker with my meds almost daily based on blood chemistry and a whole battery of  almost daily tests. I have been getting Magnesium almost every two days, IV. Yet more chemicals. Blood cell counts continue to fluctuate, but the whites are holding pretty steady.

     I had been looking forward to filling my days with playing the guitar and fiddle, but it is out of the question for another month or so, until my skin stops peeling off.  Thank goodness I brought the Baritone uke with nylon strings,  as I can noodle around on that and start to build some callouses back up.  The Ipod that Sinbad and Terry gave me just before we came up here has been great. In addition to playing music files, it is an FM radio and has some kind of pendulum in it that functions as a pedometer and tells you how far you have walked, and more.

We had visitors this last week; Beth, Rachel, Sonda, Carolyn, and Barb who took the picture.
We met up at the Duke Gardens, part of their Durham Get-away tour.

OK, nap time, more tomorrow.

C