Posted 3/16/2015 4:59 PM (GMT -8)
Hello All.....too many folks to try to name everyone. Wow, you all have been so sweet and kind with all of your words of encouragement and understanding, I do appreciate them. Thought I'd update on our activities, which includ back and forth trips to doctor's offices and hospital's.
We R again in a "holding pattern", husband is just against hospice because of no blood transfusions approved when in that program. He thinks that he will "snap back", but only a miracle will make that happen. He is so fatigued, lose of appetite(almost non-existent, really), disoriented (probably due to low blood), confused (due to brain lesions & radiation), balance problems, swallowing, breathing, etc. could go on and on, but I believe you all understand and can paint the picture yourself. He was given a steroid, dexamethasone, for the possible swelling of the brain. This med was "the pits" for him, caused him untold problems with indigestion, his esophagus was irritated from the reflux even though he was on a reflux medication. That issue on top of everything else, is enough to send a person "off the edge". He is so concerned with "disappointing" everyone, that is why he continues to "hold on", I believe. Disappointing us, my word, he's been on this journey for fifteen years and has been a remarkable PC patient, husband, father & friend, etc.
He's has about 6 transfusions, platelet's & whole blood, but he hasn't seemed to have gained any positive momentum toward gaining any of his strength back. Anyway,I just wanted everyone to know, that I am not posting much, because we are not on a "treatment plan" per say, we are just kinda "maintaining". We have another transfusion scheduled for in the morning (Tuesday). We were also told that if anything "pops up" that might need surgery or an invasive procedure, it could not be done because of his low blood issues. We will just have to wait until husband decides enough is enough.........
I thought that he could get oxygen due to his labored breathing, & that it also might help with the red blood, but his oxygen level was 98%. So we have "hit" the wall but husband won't admit it.
That's it from me for awhile........please everyone, keep fighting and look for the next breakthrough treatment and go for it.......be strong and diligent on your journey......to a CURE!