Thank you Barb, for the answer about the ridges. I do worry about putting vaseline in there because whatever I put there usually ends up goin down my throat evenually, at least some of it, and I don't like the idea of swallowing petroleum jelly. Also, the biotene gel has all the good stuff in it that's missing in my saliva.

I'm here for some shameless whining and in need of some basic emotional support. Today is my birthday and it hasn't been a good one.

Firwst, I was up until 3 am this morning with bad mouth pain. Same old thing--same spots (roof of mouth and this one spot on the right side that *may* be partly from rubbing against my teeth). Finally, after taking an extra dose of oxydose and extra-strength tylenol on top of that I somehow managed to sleep for several hours. This mouth pain at night thing is getting REALLY old.

Then I of course was not able to eat anything today--even ice cream (I tried) and its my birthday AND I went to the dentist and got some not good news. He asked if I had been wearing the "flap" he made for me (little temporary partial that fits in where he pulled my two bottom front teeth). I said no, not at all since I got mouth sores back in May and I had noticed that the front tooth that is right next to the gap where the two teeth were pulled looks like it has kind of moved around a little. And he looked and said yes, it had and now there was a problem because it wasn't where it should be and he couldn't pull it because I'd had radiation.

My radiation oncologist told me I should not worry about wearing that if it was aggravating the mouth pain and sores--it was never coinfortable even BEFORE the mouth sores, I don't know HOW it could have been made comfortable enough for me to wear it the last few months but I wish someone (even this dentist--when I last saw him before rad) had told me THEN how important it was that I wear it every day. I swear I even rememebr that I told him the last time I saw him that I doubted I'd wear it if my mouth got sore. Maybehe didn't realize how long that might last. Or he wasn't listening.

So he has referred me to an oral surgeon (a new one, the one who did the biopsy is semi-retired and I need an oral surgeon affiliated with the hospital) to look at my mouth and see what he thinks. The good thing is the dentist got me in quickly to see this oral surgeon but if I have to have oral surgery now, won't I need hyperbaric oxygen? Of course, maybe that would help the mouth sores anyway BUT I can't get it anywhere nearby. I'd probably have to go stay in another city for several weeks just for that.

Anyway, given all this, its a good thing that the class I ws supposed to teach in the classroom (as opposed to online--I'm still teaching online) has been taken by a colleague because it was clear I wasn't up to talking for an hour twice a week but I'm also really depressed about that.

I love the classroom and the electronic "classroom" is not the same. And I really had hoped I'd be close to normal right now and I still feel so disabled by the mouth pain and sores.

And, have I mentioned I love to EAT too and I wonder if I'll EVER enjoy that again.

I just started crying after the dentist visit. I haven't cried very much during all this but I
'm just SO tired of this disease (or the effects of the treatment--to be more accurate( destroying and swallowing up so much of my entire life!

OK. I'm sure all this whining is tiring to some but it really helps me to express this to people who have been there, so thanks for reading all the way to here!

Nelie,

Happy Birthday!! Each one makes another milestone you have achieved.

Thinking of you!!

Cindy

PS... Today was also my sister's birthday as well!

Nelie,

Happy belated birthday! I'm sorry you're having a tough time and I'm sorry your dentist isn't more on top of things. I wish I had a magic fairy dust answer for you but I don't. That tooth that moved may be able to be moved back when you are feeling better -- are you having pain from it? Are you having a problem down there? You may want to just hold off and when you are feeling better a small appliance would be able to move that tooth back to its original position. Ask about that before you have it extracted.

Hang in there,

Barb

Thanks Cindy and Barb.

Today I saw the oral surgeon and went back to teh dentist and also ended up getting in to see my ENT a little early (was supposed to have an appt. next week). The oral surgeon seems like a very nice and knowledgable guy who also spoke highly of my ENT and the dentist. I didn't realize this but he said my ENT had done extra training in ear nose and throat surgical oncology at one of the top places for ENT training in that.

I never really asked the ENT his qualifications because I saw him right after I got the biopsy results and I was just reeling still.

But it explains why he (the ENT)insisted (and was right to insist accrording to the folks at Dana Farber where I got a second opinion) that I needed radiation, though, even when the one rad oncologist at the local hospital (who has since left--was not the one who ended up treating me) said he didn't think I did need it.

Anyway, I'm now kind of glad I didn't see the oral surgeon before rad, though, because he said he would have pulled three more teeth on my lower jaw just because all three of them have old fillings which means there is some possibility they could abcess in the future. But he said now that rad is done he thinks if I get the old fillings replaced with newer fillings I'll most likely be OK.

Interestingly, he said to me that the risk of radionecrosis to the jaw *doesn't* get less the further away from radiation you get and that in fact some of the worst problems can crop up 10-15 years afterwards. But that many times if a tooth needs extraction, it can be extracted with no problem, even after radiation. And also they have HBO in Syracuse, which is an hour and 15 minute drive from here but not as far off as I thought I'd have to go if I ever need it.

He doesn't think the tooth that is crooked needs to come out for any reason right now. The problem, which I confirmed with teh dentist this afternoon, is that it will be harder for him (the dentist) to make a good bridge or something to put in that gap next to it eventually. But the dentist promised he would figure out something after looking in my mouth again and realizing that it really did look too sore to even think about wearing a partial right now (as the oral surgeon said "all of your mucous membranes look very unhappy in there" )

No one thought there was anything that looked like cancer.

I did get two of the sharp teeth filed by the dentist, then my mouth started hurting too much (but I think that alone will help).

My ENT is sending me for a combined MRI and PET scan in the weeks to come. Actually the MRI is Monday, which will not quite be 3 months after the end of rad but close (within a week of that), I don't know when the PET will be yet. He warned me things would show up as hot on the PET but it would be the combined reading that counts so I should just wait until he gets the results and let him explain them to me.

I thought I'd be terrified about finding a recurrence but I'm not yet--I guess I probably will be once its all done and he has the results but I haven't heard them yet.

All in all I'm feeling better about things. All three of these guys said I just need to give things time to heal, that it isn't unusual to need this kind of time, and that I have a really good prognosis of cure (disease free after 5 years) after getting teh rad and chemo so I should feel good about that so far.