My story of dealing with Myelofibrosis. It's only a minor set back, so get ready for a major comeback.
Wednesday, November 11, 2015
3 weeks out of the hospital
I've been home from the hospital for 20 days now and have been back AT the hospital every day but one. This has been an absolute kick in the teeth with the unexpected. I’ve been constantly exhausted and dealing with side effects of all the drugs their pumping me full of. My feet have burnt so bad thru the night that I have to ACE bandage two ice packs to my feet to even begin to fall asleep. And this is from a medicine that their giving me to keep me from getting the dreaded G.V.H.D. Then this blood thinner I’m on (2 shots a day) makes me have to go in a get daily transfusions of blood and platelets, to which I get fevers at night and have to go back to the hospital. But the team won’t change anything up yet as it seems all that I'm taking is needed in the grand scheme of things.
Rocky keeping a watchful eye over a late night foot bath.
I got to be honest, this is way harder than I thought it was gonna be. You go thru all the build up about transplant and for the most part it's to get you thru the chemo, transplant and the stay in the hospital. That shit was cake compared to being home though. Today I'll be here from 9:30-3ish if all goes on time. Which it NEVER does. It’s unrelenting. Hurry up and wait is the name of the game. There is no possible way to plan anything because my schedule changes daily as well as while I'm here. Which can be pretty frustrating. Anyway…that’s my pity party, and I know it WILL get better, but for now…I don't feel like I'm living, contributing anything to the wife, kids or house, cause I’m just getting thru the days. I feel like Maverick in Top
Gun where I’m in a tailspin and I’m just waiting to hit the eject
The good news is that we got a bunch of stuff figured out over the weekend and I can
finally walk without being a cripple.