Message From my doctor:
To: Karyn E Taylor
From: Larry D. Anderson, MD
Received: 8/9/10 6:56 PMWell, the light chains are not much higher but certainly not decreasing so I would prefer to at least do half dose decadron (5 tabs every Tuesday if you are willing) and will try to add a dose of Doxil to this next cycle if your blood counts permit (probably easier to do on day 8 next week).
LA
Greg and I just got back from an overnight jaunt to a family camping resort on the Arkansas and Illinois rivers in Oklahoma, where we stayed in a small cabin. It was about 4 hours from where we live and pretty and peaceful even if Greg didn’t do so great with the trout fishing. It allowed us to scope the place out, and we really liked the cabins right on the river, with screened porches overlooking it. I really just layed around, did treatments, and read, but liked the change of scenery and enjoyed the drive. It would be great to meet others there and hang out, explore the area more (the Fagerland’s?)
I had a long chat with Greg about my quality of life and how miserable I have been, letting him know I’m not giving up but would welcome the relief of just laying it all down and having it all over. We’d gone to dinger at a marina and I was really just trying to tell him to be glad for me if it happens soon, to focus on the relief I and peace I would have. He asked if I felt like the end was near and while I don’t, and I admitted that to him, I just don’t feel like things are improving, and keeping me alive feels like a waste. He said I was very important to him, he doesn’t want to lose me. I talked about how difficult everything is for me, what a struggle, and we both just hoped it would get better. The cruise is only a month away, we are hoping I can be in as good as shape as I was for the wedding.
Currently, all my physical complaints, from head to toe, after 2 weeks off chemo, include:
Losing/partially dead nails, worse on fingers
Restless legs/ cramping
Constipation/ diarrhea
Flatulence, horrible chemical-y smelling
Sore on butt cheek, sort of painful
Dry skin, overall soreness, easily bruised
Dialysis exit site ‘seeps’ and is sore
Appetite sucks, food sounds good sometimes (I feel hunger) but then never tastes good/ can’t eat much
Blood pressure runs very low
Sore throat/cough going on over 6 weeks now
Occasional headaches
Tired and sleep a lot
Throw up very acid-y stomach contents about once every two days
Trouble regulating temperature, hot then chills