Patty I have no idea how to answer your post and will leave it to others here who are better at putting their thoughts in to words. Having said that I understand some of your frustrations and only hope that things get a little easier for you.
If venting here makes you feel better....continue doing so whenever you need to which if I were in your place would be often.
Love
Gabriele

History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family