Hi Maribeth:
Keep the faith. There are excellent surgeons out there. My fiance, Dave, had a modified radical neck dissection with a flap graft taken from the radial area his arm. I would be happy to talk to you about this if it is presented as an option. While survival is the ultimate goal, cosmetic result is important to quality of life. It often helps to inquire if your head and neck surgeon is also a board certified plastic and/or reconstructive surgeon.
Please keep us posted as your paln evolves.
Best,
Kim