Everyone here has said progress here comes in two steps forward and one step back, in fits and starts, and I'm just at the point whre I need to share my frustration with people who have been there.

First, I am still having bad mouth pain. I don't know if it's worse--it feels worse but it may be the effectiveness of the pain killers is getting to be less because I've adapted to them. It also seems like I have some new and painful little mucositis sores--ones the size of a pimple that just are there on my tongue or cheek lining hurting like all get out anytime ANYTHING gets in my mouth (water, tea, even in the last day saline solution).

I didn't post about this because I was kind of embarrassed but last week I suddenly had some really strong pain in my throat when I swallowed that came out of the blue and I ended up calling my ENT becaue the pain was so sudden and so sharp and so new and in a spot where I couldn't look in my mouth and I was afraid it was something serious like a sign of a recurrence (it was also right under the spot in my neck that has been swollen from rad). Anyway, it was the first time (and I'd like to say the last but probably not) that I'd called him panicky about a symptom and he was good about squeezing me in at the end of the day the same day I called and examining my throat manually very carefully as well as peering down it when I said AH. He told me the mucous lining of my throat looked like it was "peeling" and that he thought it was quite possible that could cause some sudden new sore spot that had nothing to do with new cancer--that there was nothing he could feel or see that would lead him to beleive it was a recurrence. He also went out of his way to try to find me soem new numbing spray or gel that I could use that would get at the sore spots. I was glad that he was so responsive and didn't seem to mind too much that I was paicked.

But anyway, since then, the throat pain has gone away but I have a new spot in my left cheek that was intensely painful yesterday and one today under my right tongue. I'm getting that this may be a new mucositis phase that is NOT welcome. How am I ever going to be able to try eating things when right now even my own saline and soda standby is painful to use at times?

And then there's the puking from gobs of mucous. I lknow I said I was all done with that--I thought I was until today when this morning I vomited TWICE (once right after waking--always a nice way to start the day) or, actually ahd the heaves twice both times because of gobs of mucous tht eventually I managed to spit out. Yuck. And of course, this happened on the first day of a visit from my brother--who is being very nice and understanding about it all--but I ahd hoped I'd be well enough and have energy enough to go out and show him around some (he's never visited me here before) and instead my husband did that while i was in bed all morning spitting, trying to gargle and stop the bad mouth pains (nothing worked) and fighting nausea and hot flashes (these are from the Tamoxifen I was recently prescribed for my breast cancer possibly abbetted by the saligen and they hit full fore for the first time this morning).

Yesterday, we drove to an airport two hours away (because my brother ahd gotten a really good fare there) to pick my brother up and then my husband and brother wanted to stop to eat something at Boston Market--which has lots of side dishes that are GREAT mushy food that it seems like I should be able to eat--pureed squash, creamed spinsch, mac and cheese, and I tried a little bit of squash and almost choked--had to spit it out because it seemed so inedible--because I had NO saliva and it stuck to my teeth and the roof of my mouth! How does one eat things with no saliva (and when can I expect the they benefits of IMRT and amifostine might actually show up and give me some saliva?)? Is it just that I need lots of practice in the safety of my own house with getting stuff unstuck and down my throat? I'm starting to wodner if eating will ever be pleasurable and not an ordeal at best.

Whew. That was a good long whine--or vent--or whatever. Thanks for being there to those of you who have ahd the energy to read all the way to here.