Hi Erik, yes, I still have a PEG. I sipped water all through my treatment but during and after for three months didn't try to eat much because I had a *really* sore mouth and absolutely everything I tried to swallow hurt my tongue too much. Around September-October that got better but I seemed to choke on anything with any solidity. When I realized I was choking on canned diced peaches I asked for a swallowing test and actually ended up having two (a barium swallow and a FEES) which showed two things. First, my epiglottis is not moving to close off my trachea when I swallow--it seemed to be almost frozen in place though it moved a little--so everything has to be pushed past the trachea with a double or triple swallow (meaning swallowing three times while holding my breath)--and I am only successful at doing this with liquids--solids I can't push back that way because of the second thing which is that my ENT said my throat looked puffy and rough (and I guess very dry) and stuff (in the case where he was observing during the FEES it was applesauce) just gets stuck to it, then slides down he wrong way and gets inhaled (though I can feel when that happens and cough a lot).

Since those tests, at the advice of the speech pathologist, I haven't tried anything but swallowing liquids--that is hard enough for me. I was told that if I healed more and my swallow got stronger hopefully eventually other stuff would be possible. AND I have to swallow small enough sips of stuff that I do about 6-8 oz in an hour--which makes it pretty impossible to think I could survive on a liquid diet without the tube. I'd be doing nothing but swallowing all day!

I hate the tube but I'd hate even more to have it removed then have to get it put in again and I don't think my doc WILL remove it until I can prove that I can consume the right amount of calories and nutrition orally. And I'm definitely not there yet. And part of me is afraid I never will be because things don't seem to be progressing much. Thats' why I need encouragement. If I give up, or let these exercises go,I KNOW I'll never get off the tube.

SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"