I'm not yet doing everything by mouth but I'm working on it! Basically I'm doing less by PEG and trying to eat what I can at meal times - I get full really quick since I'm not used to having food in my stomach all at once (I've been on the feeding pump for about 3 months or so now). But I eat some fruit and soup every day (I started two days ago) and tonight I went out to eat with friends. I tried drinking the formula at first, but it took me forever and it made me super full all day from one can - not to mention it tasted horrible since I can't taste the sweetness in it, so I scratched that idea. So I'm just doing less by the PEG as I do more by mouth and eventually I'll get there. I still have trouble with spices and stuff (I have some of those pesky ulcers left), so I guess I just need to start doing some cooking around here to make it so that I can eat it!

It is those "pesky ulcers" that worry me.

All this week it has felt like they were trying to erupt. Fortunately I made it to the week-end, but just barely.

Next week I think they will get there way with me

It might be nice to have a pump. I get tired of slow "gravity feed", and I think they put my PEG hole in too low. It is hard to get more than a can in at a time.

I'll add to the good advice above to keep swallowing as much as possible and to stretch your jaws open as much as possible -- It takes a lot less effort to keep these areas functioning than it does to restore function to them.

Don - how's it going so far this week???

Margaret - you're done, right??? Yippee!!! How does it feel???

Hey Stephanie!

Yes! I'm done. Today was my first day off, other than weekends, of course, and it felt pretty good. One slight complication, I've developed shingles on my scalp, which has been a little painful - but I'm on meds for it so it should clear up. The RO thought that was probably what caused my fever spike on Friday night. My tongue is very swollen and the mucositis is pretty bad, but I'm sleeping a lot, trying to stay hydrated and letting my body do the healing thing.

How are you faring?

Margaret!

I'm making it. I've stopped using my PEG tube for feedings so I am obsessively counting calories and it's driving me nuts! I bought a scale today to make sure my weight doesn't drop. Since I stopped the tube feedings my appetite has increased but it's just frustrating when it takes so long to eat! That's the worst part, well that and not being able to taste sweet! I have a cat scan tomorrow to check on my PEG tube because it has really been hurting me the past few days and it's kind of swollen around it so they are going to check on it and make sure there's not a fluid build up around it or anything else wrong with it. I'm hoping to go back to work after Labor Day - it's not strenuous work at all, just office stuff - it will give me something to do!

I hope your shingles get better soon!!! The mucositis will get better, but it'll take a little while. It's crazy - almost overnight one night you will notice a big difference. I still sleep a lot! I sleep until about 10 every morning and then most days I take a nap.

Radiation Road is awful lonely now, but I am so happy for Margaret.

Am I the only one left?

Nine more to go (week six).

So far not much change since week four(when my taste buds bit the dirt ) except for a big bald spot on the back of my neck!

Today they changed my program since some of the fields are done and now the time being zapped has been cut in half.

I can't really tell much difference yet, but maybe with less zapping I can slip through without any of those "pesky" mouth ulcers or "heavy" mucous, but just in case I have my Lortab, Lidocaine and Robitussin ready!

I know that last week can be a killer!

Wow Stephanie! I'm impressed that you're off the PEG. That gives me something to strive for! Hasn't it been less than three weeks?? So other than sweets, your taste is pretty normal? Wow wow wow!

I think my secretions are actually getting worse this week and my mouth is pretty beaten up. I think I will start trying to sip some broth or thinned soups in the next couple of days, though, just to see how it goes.

Don-

I'm sure there are others still in radiation, they're just not as chatty as we are

Hang in there, buddy. It sounds like you're doing pretty well.

Don- I too am sporting that bald spot on the back of my head except I have a little bit of hair to cover it up - not much because my hair is pretty short. And I doubt you are the only one right now! But hang in there because you are almost done - 9 left! Then we'll have to move out of the "currently in treatment" forum.

Margaret - I'm not officially off the PEG - I have to make sure I'm not losing any weight before I make it official - but I'm definitely not using it right now! I am three weeks post treatment tomorrow and I stopped using the PEG this past Sunday by accident (I went out to lunch and got stuck out shopping with my parents and just didn't feel like "plugging in" so I ate dinner and stuff and I enjoyed being free too much to "plug" back in after that!)

Margaret,

Normally it is nice to know if you break down that someone is on the road behind you.

But, in this case if that happens you and Stephanie will just have to toss me a rope and drag me in.