Another update:

Yesterday I had my appointment with my RO. Despite the fact that I kept putting his name on everything to make sure he was cc:ed, he hadn't gotten any of my pathologies or scans and was completely surprised when I told him I had had a recurrence. I even called his office 2-3 weeks ago and asked if I should move up my 12/4 check-up and be sure to tell him that I had had a recurrence and would be discussing beginning radiation treatments. *sigh*

Despite the initial craziness, I had good appointment. I left feeling almost excited about the next round of treatment. I feel like I am in very very good hands. My RO is a professor at the local university and his primary research is in head and neck cancers in young people. He is also associated with a really amazing CCC, which I got to visit yesterday for the first time. It's the best looking medical facility I've ever been to!

It seems my RO agrees with a lot of you on this sight...I really need to hit this hard. He plans on radiating both sides, avoiding the right cheek area to save at least one major salivary gland. He says in his research with young people/aggressive cancers, adding chemo to the radiation treatment can improve my chance of 5-year survival by 15-20%. So, knowing that, I'm pretty sure I'll be doing that. I'll have to meet with the MO later next week to go over the disadvantages/side effects.

There are a lot more appointments it seems I'm going to have to have before I even begin my simulation, in addition to the MO. I'll have to have a dental evaluation, an MRI, a swallowing test, and a baseline hearing test. I'm trying to squeeze those all in next week, which will be hard, especially considering I have exhausted all my paid time off at work for the year.

The part of my appt. that made me the most excited, though, is that my RO has been researching the most effective diet for helping people to maintain nutrition during treatment and avoid needing a PEG. He said this was going to be like preparing for a marathon, so from now until as long into treatment as I can, I have a list of about 2000 calories worth of nutritional supplements IN ADDITION to my normal diet. I think that's pretty crazy since my low metabolism usually causes me to put on weight with anything above a 1400 daily caloric intake. I'll listen to him, though, since I REALLY REALLY REALLY want to avoid needing a PEG. For some reason I don't dread the side effects of radiation and chemo nearly as much as the idea of having a feeding tube sticking out my stomach. Maybe I'm weird.

Anyway...sorry for the long update. I learned a lot yesterday and am just excited about the next steps to kick this thing in the butt.

I'll update again once I know more specifics about the radiation treatment. I think he said he'd be using helical tomotherapy, but I'm not entirely sure. The main thing was that I needed to schedule all those other appointments before we got into all the details about the radiation treatments.

So until then.... Thanks for listening! - Jen