1st day of Vidaza and Decitibane (or something like that) today. It's mainly a Myelodysplastic Syndrome chemo med, but it also used for ppl who are "incurable" without a bone marrow transplant. It was so weird to hear them go from the normal "our goal for you with this chemo is remission" to hearing "our goal for you is transplant, and chemo is supportive care only. You will not be cured by this medication." Got sick once during infusion. They did zofran through the medport before infusion, so that has been the only time I got sick so far. The main side effect right now is fatigue...like the "i can't life my head or hardly blink" fatigue. It started before I left the clinic today, and has gotten progressively worse. Also some pain in my back, but not sure if it's from the neulasta or chemo. Feels different from my normal neulasta pain. They are discussing throwing in a random cytoxan round every few months.
I'm having a real problem with keeping my head up right now. Please pray for me. When I get so tired and sick, it makes things very hard for me to get a hold of. Got to go see my very best friend, his wife and daughter for New Years. I miss them so very much. Coming back to where I live and practically sit in a room alone all day is really bothering me. I may go back there to help with the twins they are about to have. At least there, I can sit in the living room, help with dinner if I'm up to it (and they don't push me if I'm not), just be around them and not feel constantly alone. It's where I feel I need to be, but moving is going to be hard. I have enough to fit in a single car, but it's from Texas to Memphis...and I'm having to sell my car next week to afford treatment.
Just please pray for me. I'm doing 5 days straight of treatment, every 4 wks, for 8 months, or until a Bone Marrow / Stem Cell transplant happens. NEED A HUGE HUG RIGHT NOW! :-(