Nelie,
I am so glad that you are making progress!!! Remember I am about 3 weeks ahead of you as far as finishing the Chemo/radiation. There is HOPE!!!

Now onto another issue... opening our mouths wide. I didn't realize I had a problem until you posted about only opening wide enough to get two fingers in and you are suppose to get three. I could just barely get two in!!! I mentioned this to my ENT and he was so funny. Once I showed him how far I could open my mouth he could stop opening his wide. He did this about 6 times and told me of an exercise to try to fix it.

Take some tongue depressors (amt stacked to the size of mouth opening) and wrap them together with rubber bands. Put in mouth twice a day. Each day add a depressor. Do this until mouth opens as wide as I want.

I going to start this tomarrow as I left the depressors at work.

Hang in there we are getting better!!!
Take Care
Love
Terry

PS Thanks for the congratulations!!

Terry, Let us know how that works. And thanks for the encouragement (I had to give up on the applesauce last night as it felt like it stung my mouht a little and I couldn't swallow it easily--I think I was just tired. I plan on trying agaon later). Chris, thanks a lot for posting what you found about the shaker exercises since I didn't have time to search on it. I am going to add those to all the other things I'm doing to try to get better!

I am having a hard time being good about dossilving 5 of those thrush tablets a day in my mouht. Yeserday I dod 4 and was feeling so nausdeated by the 4th I couldn't bring myself to do another. I'm netioning this ebcause, again, if I say it here it seems to help keep me on top of things.

Nelie

Nelie, I'm glad to hear you're making progress. I'm rooting for you to keep making constant improvements. I'm sure you'll be back in the classroom where you want to be one day!

Chris, thanks for that Shaker Swallowing Rehab exercise. I'm going to give the info to my husband in case he is interested in trying it.

Connie

Just a brief update--I had a regular follow-up appt. with my medical oncologist Monday and I mentioned my problems swallowing and they promptly set me up with the speech pathologist at the hostpial who will give me a swallowing test. At first they said his first available opening wasn't until Novemeber but then they called back and got me in earlier--tommorrow I go for that test.

Meanwhile, I saw a different RO than my usual one, because the usual one is away at a conference, yesterday as part of ther regular weekly visits with an RO that take place during rad. because I'm having rad for my breast (which is still a total piece of cake).

It was pretty funny because the nurse at radiation medicine did a very thorough job first in terms of finding out how I was feeling and where I was in terms of recovering from the rad and chemo for the oral cancer. Then this poor (young) RO from Roswell Park walks in knowing I'm having breast radiation but apparently having NOT looked at the rest of my records, and looks at all the nurse's notes and says "um, you're having trouble *swallowing*?"

So I filled him in on the previous oral radiation and then he said that my throat could have narrowed because of the radiation, as well as having scar tissue that keeps things from going down smoothly, but that it should improve and get better over time. He seemed to think this would just happen even without swallowing therapy, just by itself and said that it takes at least a year for the radaited area to really recover as much as it will and some people say a year and 1/2. I wish my normal RO had told me that! It seems like I'm hearing all these long estimates from doctors AFTER the radiation.

Anyway, I hope that by June (which will be a year) I am back to eating pretty much normally, but it did give me some perspective.

Oh--and I've done a couple more bowls of soup since my last eating update but eggs doidn't work too well.

Well I just had my swallowing test. It's kind of neat watching a video of yourself swallowing as you do it. And it turns out that when I feel stuff is getting caught in my throat and almost going down my airway-that's because it IS. It seems I can drink liquids OK (but not fast--and I've always felt frustrated with how slowly I seem to have to sip water or whatever) because every time I swallow I double-swallow to clear the spot where the liquids collect behind my epiglottis--which apparently looked "stubby" to the doctor and he thought could be damaged by the radiation but definitely isn't moving the way it should be to protect my airway and to help me swallow. I wasn't aware I was double-swallowing but the speech pathologist said it was a good sign I had learned to do that with liquids without thinking.

It's good news because it means I am feeling when stuff gets stuck there so I'm not so likely to actually inhale things into my lungs. Anyway, he gave me some exercises to do to strengthen the muscles that control the movement of my thorat around the epiglottis and I see him in a week so he can see how it's going.

So the bad news is it isn't really just as simple as start with liquids and then move on to solids because I really have to rehabilitate the muscles on my throat before swallowing anything at all solid is going to work. But he seemed to think with the exercises eventually I'll be able to get back to eating solid food. I'm really glad I went for that.....

Nelie --

Very interesting -- Barry's scheduled for his swallowing test on Nov. 8 and we are pretty interested in finding out what it shows. He is gradually adding "more solid" foods to his diet (this 3 weeks' out from treatment) but nothing really solid yet. Tuna cassarole and similar is about it and he has to eat that slowly and with water to make sure it gets down.

Hopkins sends almost everyone to a speech/swallowing person for evaluation now because they think the sooner the exercises get started the sooner people can resume normal eating.

Gail

I wonder if all the vomiting I did (between the chemo, the amifostine and the phlegm that got caught in my throat) could have damaged the epiglottis. The doctor did say that it's possible I've always had a "stubby" epiglottis and it's just the muscle control that has changed.

Just an update on how my swallowing is going.

I am trying to swallow more liquids gradually, even if I can't do solids. I really can't wait for the day I can do pasta or mac and cheese and what I miss the most is salads, which I hope I can do, at least with shredded veggies and lots of dressing one of these days, even if I'm done crunching on whole carrots.

I made Gails' crab soup yesterday and my husband enjoyed it unblended while I pureed it and had a bowl. Later I had a bowl of cream of broccoli soup--its one of those organic ones that comes in a box. Very good--I added some extra half and half and some miso to it for some extra protein and to thicken it just a little. Today I'm going to have a smoothie for breakfast and the two soups later in the day and as well, I am also swallowing a big mug of white tea every day. This is way more swallowing than I've been doing previously, and I'm hoping that even though it's all liquids, it will help get my throat back in shape to swallow solids (of course, I'm also doing cans of jevity down the tube for the bulk of my calories since a smoothy and two bowls of soup, even rich soup, won't exactly cut it).

I've been less successful at keeping up the swallowing exercises as much as I should. I'm doing them once or twice a day and I think it's supposed to be more. And I'm not really even sure I'm doing them right. One is swallowing with your tongue between your teeth and when I try to do that with a little bit of water or tea in my mouth I end up choking on it. The other also makes me cough--swallowing and freezing midswallow when the muscle you can feel if you put your hand right under your chin contracts. I can do this if it's a dry swallow, but I'm not sure that's the same thing.

I guess maybe it will just take some time to make these exercises part of my life and I'm so worried they won't work and I'll never be able to swallow solids again. This has actually been one of the hardest things so far to deal with. Its not a possibility anyone really warned me about and I just can't imagine being stuck swallowing only liquids for the rest of my life.

Nelie

Nelie, good for you for working so hard at this. I wonder if some of the challenge may end up being mind over matter. John said to me tonite[after his 3rd bowl of ham and bean soup] "you know, even tho I fantasize about a porterhouse steak, I may not like the taste or the fat anymore." Lightly steamed veggies with your favorite dressing might make a great salad. Have you tried bean soup? [the 17 bean variety] you can puree it if need be. I know you feel its going slow, but you seem to be making progress to me. Amy

Nelie,

In comparison to my eating progress after treatment, I think you are on track. My treatment ended in 6/04 and I got PEG removed in 1/05. I remember last Thanksgiving that I cooked the regular meal, but I only ate a few bites of stuff like sweet potatoes and pumpkin pie. Just keep doing what you are and you will see improvements. Seems like I have noticed improvements every 3-5 weeks in the last few months. Also, I've found that there are days when something I ate last week or the week before doesn't work - don't let those days discourage you - move onto something else and try again later. You will find you have "fall back" foods - many times I have ditched the dinner I cooked and had high hopes of eating and moved on to an omelet - that's one of my new comfort foods - you'll know what yours is. I have read your posts about your swallowing. I still have difficulty swallowing - food seems like it lands on a "ledge" when I swallow and it takes several drinks to move it on and sometimes I get totally blocked. I also cough quite a bit when I swallow - Doc says it is mainly scar tissue from the rads - I was blasted from both sides and front and back. Doc also said to turn my head to the "bad" side and then swallow. This is supposed to force the food to the "good" side and make the swallow easier. It does work for me although not every time - probably 7 out of 10 times. How is your taste coming along? I have been pleasantly surprised to regain probably 90% of my taste - sugar remains a mystery to me, most of the time it burns my mouth but I can tolerate mild salsa's - that perplexes me.

Anyway, keep on what you are doing - you're headed in the right direction.

Pam