My own update

It has been two years since I went through the operation, diagnosis, and the beginning series of radiation to get rid of ACC. If you are a new reader of this blog, head on down the page and start from the beginning. I tried to truthfully record my experiences and how I dealt with the side effects of treatment - I hope my words offer you some assistance on your own path.
As for me today - I am working full time as an academic medical librarian. Still can't taste much but have gained weight (I should be a size 3 for giving up meat, chocolate, and alcohol!! Meat - nasty beyond description; chocolate - like a crayon; and alcohol burns). Can't handle spices, not even black pepper (after talking with Dan from the Seattle area, this is most likely permanent.) Have good strength, thanks to the whey protein drink (still do one of those a day, to make sure I have protein levels up.) Some pain on the left side of my head where I was radiated, and some up over my left ear where I am missing the piece of skull they took out in November, but dealing with the pain is part of the ownership negotiation for a cancer patient post-treatment. I see the head/neck folks every 3 months (next visit is tomorrow), and the radiation oncologist every 6 months now. (My one rule about agreeing to see the doctors so frequently - there needs to be students/residents present - can't waste a rare cancer like this one.) I still cover up from the sun, but thanks to that habit to avoid pain, my scars are faint and nearly invisible (thank you, Coolibar.)
If you are a new visitor and have or know someone who has been diagnosed with ACC - know that you are not alone. Yes, this is rare. But not so rare that there isn't someone who might have experienced something similar to what you are going through. Let me know if I can get you in touch with some of those folks, or if you would like to know how to get a contact that would help you locate research information on this cancer.