Oh Liz, Reading your post bought tears to my eyes. I am not experienced enough to help, but as a tiny part of the OCF family I support you and you can "dump" on me anytime. Good luck with the appointments and keep the faith.
Will look for your update.
Sammie

C/G to Husband Richard SCC Op 4/1/2005 T2N0M0,Neck disection, 35% of tongue removed.
Reoccurance 3/2007,Lymph Node same side Positive SCC, Swelled to 2.5 inches. IMRT X35 Cis X3 Completed 33 IMRT Cis x2 carbo X1 MET to lungs post treatment 10/04/2007
Passed peacefully 31st July 2008.