Relapsed High Risk Myeloma – Update July 19 2013

Couldn’t sleep at all in the motel. Finally turned my computer on at 2 AM and worked on a genealogy chart for my Gram’s side of the family. Tried hard not to wake Jani, but did at least one time.

My guts were not burning at all – it helps to sit up more than lie down…but, probably not that good to stay up ALL NIGHT!

Got up early to arrive at St. Luke’s Hospital MSTI for my 7:40 AM blood draw (CBC only). Had some trouble with my Bard Power Port and it bruised.

My platelets were only 12 (not so good) and if I lived in Twin Falls, I might have waited around for a platelet transfusion. I will wait and go to Lost Rivers Medical Center in Arco and get my blood tested Monday morning, 22 July 2013. Then, if my platelets and/or hemoglobin are low, we’ll call St. Luke’s and probably drive to Twin Falls in the afternoon for either/or a platelet or packed red blood cell transfusion. It takes St. Luke’s Hospital in Twin Falls all day to get platelets from a blood bank in Boise and once they arrive they have to irradiated before they can be given to me. 

RN Vicki gave me my intravenous Kytril, carfilzomib along with pre and post fluids. The carfilzomib, along with the oral pomalidomide that I take are expected to lower my platelet count. Hopefully, I will not bleed. Intravenous push Kytril makes me very tired, but has pretty much eliminated the burning gut I’ve had without it.

Jani went shopping for some cold food items to put in our cooler while I got my chemo.
We were on our way home 10:30 AM arriving just before 1 PM.

Once home, I felt TERRIBLE. Had an all over headache, but, especially  over my eyes and forehead. My legs (calves) were in spasm and nothing helped that. I tried to nap and could not. The burning neuropathy pain I have in my left leg from my toes to my groin bothered me, but, the neuropathy pain that has recently developed in my right heel is most bothersome – feels like I’m stepping on a hot iron all the time. I remained in this uncomfortable way all afternoon, evening, and night – MISERABLE…okay, I am WHINING NOW!

Forest fires have broken out north of us AGAIN this summer – known as the Papoose, Bradley, and Lodgepine Fires and our Big Lost River Valley had filled with fire smoke – I HATE THIS and I’ll probably be back in a N-95 mask again to be outside.