So sorry for all you are going through. You are so patient in your writing. I can almost picture myself sitting in front of you while you explain it all. You definitely have a grasp on the situation...if only YOU had the control, huh?
Please keep us updated. I am fairly new to the forums, well, I guess it's been 4 months or so now, so you are new to me!!
I know this is probably not a comforting thought, but you are part of research that's for sure!
Here's hoping all is approved and things are figured out soon!
Kathy

Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14