Nelie,

You are on your second round of cancer treatment and you are supposed to be tired! People have totally fallen apart doing a lot less. I have always questioned people getting overly tired the first time around, but we are all different I guess. Having gone through radiation 3 times, I can tell you that you will need all the rest you can get. It drains you, and you need to accept it. A nice walk would help, but don't kill yourself over it. It is not entirely physical and once you are done your emotional state will really improve.

Glenn

Gail,

I haven't had a thyroid test yet but I'm going to ask my ENT about having one when I see him Thursday. If he orders it, I'll have to go to the hospital for an extra blood draw or maybe they can do it when I go see the med oncologist in three weeks for my normal follow-up there. They are already taking blood at every follow up to check my WBC and whether I'm anemic still (at last check, I still was a little which is another thing probably contributing to the tiredness).

Glenn, thanks for reminding me that the fatigue is normal, especially the second time around. I actually didn't have severe fatigue the first time around during rad and chemo for the oral cancer--at lest not until a week or two into recovery where I did have a couple of weeks where I was just tired all the time. In fact, if anything during the end of my treatment last time I had insomnia. Probably because I had to wake up every 1/2 hour to hour anyway to spit out phlegm and was afraid I'd choke if I was in too deep a sleep. Anyway, at least I don't have to worry about that this time around!

Nelie

Hi Nelie,
Sounds like you are getting plenty of exercise. I didn't mean to suggest you go run 5 miles or spend an hour in the gym. You can expect to be fatigued after all your are going through. No one could ever give me an explanation as to why I was so cold. My thyroid was tested every two weeks and there was no problem. I was not anemic and I only lost 4 lbs the entire time with no peg.

Definitely get them to check your TSH when they do the next blood draw or sooner if that is weeks away. Just think how pretty those bulbs will look next spring and keep your spirits up.

Take care,
Eileen

Had a follow-up with my ENT who scolded me for not calling him earlier to let him know I was having problems swallowing (he also asked why I hadn't said anything in late August which was the last followup but I didn't KNOW then. I was sipping iced tea and eveything else seemed to still hurt too much to want to try eating so I thought I was OK--obviously I should have pushed myself to swallow earlier just to see if everything was working--even if it hurt).

OK, it's a good lesson for me to be more assertive when I think there's a problem. I did take too long to let someone know when I was having problems because I kept hoping they'd go away. Just exactly why I let the lesion on my tongue go for so long. Obviously I am not good at hounding doctors the second I think there might be a problem and I need to get better at it!

Brief update and whine session:

My FEEST test is scheduled for Friday at my ENT's office. The speech pathologist from the hospital is coming there to observe it and help offer solutions to whatever is found I guess, but she's a different one than the one I saw last the hospital and I'm hoping maybe she has some other exercises. I'm glad it's being done at the ENT's office--I'd just as soon not have to go to the hospital for a few weeks--I've been there way too much this year!

What I'm really scared of is they will tell me at the end that my epiglottis is too worn away and I simply can't swallow solids. Ever.

Yesterday I did some liquidy mashed potatoes with turkey gravy (took an hour to eat a small bowl of this) and some cream of broccoli soup with a little cheese melted in (took another hour). Total calories: maybe 300. And that is about 2 hours of really *concentrating* while I swallow tiny sips. I can't sip and read email or talk or do much of anything other than watch mindless TV or I start choking too often. I want to get off the tube but how will I ever find the time to get the nutrition I'd need every day orally, in liquid form, at this rate of consumption? I'd have to spend half my day sipping and occassionally coughing it back out when it goes down the wrong way!

Anyway, because I could do the liquidy instant potatos and gravy--which are fairly thick--and I seemed to have less episodes of things feeling like they were going down the wrong way, I had a moment of optimism today and decided to try some eggs scrambled very soft. I had a moment of triumph because it felt like the first bite went right down. And it did. Right down to that little platform my epiglottis makes when it doesn't move down correctly, apparently, and then just sat there. So after another bite or two I ended up coughing up several bites at once, then trying to reswallow, coughing when they went down the wrong way OR they got caught again and finally giving up and giving the eggs to the dog.

I am not ready to beleive this is the best I can recover back to. I just feel SO frustrated. No one even warned me this was a possibility--a permanent swalowing problem that is--I expected it would be bad during and right after rad but that I'd recover. As it seems most people do. I want to believe that the swallowing practice is making me better but it only seems to be making swallowing liquids better. Maybe.

I need encouragement. I'm in my tenth month of fighting one kind of canfer or another and I want to gte on with this last fight (though it's really against a side effect of treatment) and it seems to not be working very well.

Nelie

Nelie, after reading your dialog with Brian, I realize even more what a strong woman you are. You will find a way to deal with whatever the sallowing problems are-I really believe that. You have so much to contribute. Keep demanding the best answers from your Docs to get you where you want to be. Amy

Nelie,

I know how frustrated you feel but the swallowing problems you describe sound exactly what I went through this past year. I am one year ahead of you in this deal and it does get better with time. It's just very slow. Believe me, you are on the right track - you just have to keep on and don't give up. There have been so many meals I have fixed only to end up throwing it out and having a carnation instant breakfast. I still have swallowing issues and it takes me longer to eat - but I have gotten a little quicker - about 45 minutes to eat tonite. I have experimented with so many foods this past year trying to find what works. I remember Thanksgiving last year I barely got 2 bites of food down and this year I had seconds - not much turkey but could eat most of the trimmings. Comparing your progress so far with mine this time last year, I would say we were at about the same spot. Please do not give up - keep trying new things every day -something will work. By the way, I had my PEG removed in Jan 2005. I lost weight until June '05 and since then have gained about 8 pounds - I go back for a 3-month check-up in 3 weeks and hopefully I have gained a couple more pounds. I still have a bowl of ice-cream just about every night for the extra calorie boost because most of what I can eat does not have a lot of calories - I eat a lot of fish, soft-cooked veggies, pasta (which has just recently started working) and eggs. I drink tons of water - I have to carry the water bottle from room to room just about.

Just wanted to let you know that I have walked in your shoes and things will improve. I know exactly what you are talking about when you describe the platform food lands on when you attempt to swallow and having to cough the food back up. I still deal with this but have learned to work with it somewhat - I imagine I still have a lot of learning and adapting to do. E-mail me if you need to.

Pam

FEEST test update. In the room for this test there was a crowd! My ENT, a medical student who was observing what he did, a speech pathologist who consults with my ENT, the speech pathologist I had seen before at the hospital, and a student in speech pathology who was assisting the speech pathologist who consults with the ENT. The multiple speech pathologists first took a much more detailed history about my swallowing problems and then the test which sounds like it was bascially what Gale said Barry's ENT did (with less people in the room)--a scope and then, while looking down the throat with the scope, I had to swallow various substances; thin liquid, thick liquid about the same consistency as the cream soups I have every day), pudding-texture liquid, and applesauce.

As before, I did fine with the thin and thick liquids, somewhat less well with the pudding-y stuff and the applesauce was a disaster. The main results, actually, weren't so different from the barium swallow, although being looked at this way they could see that with the applesauce I probably did end up inhaling some of it and with the pudding-like stuff I had to cough a lot of it back out to avoid that.

Like last time, the good news was that when this happened I felt it and reflexively coughed hard until I coughed it back out. Everyone agreed I haven't lost any sensation in my throat and have a good hard cough and so I'm reacting the way I should when stuff gets even dangerously close to being inhaled--which means I don't have to worry so much about inhalation pneumonia.

Like last time, the bad news to go with this good news is that I really CAN'T eat something much more than thick-liquid texture without probably having stuff "go down the wrong way". The NEW news is that my ENT thinks this is mainly not because of any kind of permanent problem with my epiglottis but simply because my entire throat and base of tongue area are still very very swollen, according to him, in combination with the fact that my swallowing muscles are weak.

So the prescription, from the speech pathologist(s) is to do more swallowing. I was told I should try to spend 1/2 and hour four or five times a day swallowing soup or some other liquid and to think of it primarily as physical therapy--after half an hour I should quit, even if I haven't gotten that much down in terms of calories because the muscles will be too tired and if strained too much they can actually swell MORE. I also was told that I should do a double swallow method that involves a cough in between the first and second swallow to be sure I'm not inhaling anything.

My ENT reminded me that I still have 3 to 6 months of healing from rad ahead of me (and I'm starting to believe from what I've read here that even that is possibly an udnerestimate of how long healing can go on for) and that there's a good chance as the swelling goes down I'll be able to swallow more things. He told me that every now and then I should try something I'd had difficulties with before (pudding, eggs, melted cheese, etc.) to see if I could do it better since that's the only way I'd know when I was getting better BUT that these experiments definitely had to be combined with coughing at the end to be sure nothing went down into my lungs (as I said, no one actually has to tell em to cough then--when somehting goes down the wrong way I cough reflexively which is good)and should probably be done when my husband was around too (actually I don't know how much help my husband would be if I really choked but I didn't tell him that. :rolleyes: )

So some bad news, but some hope. I had been thinking of the swallowing I was doing partly as a gearing up for getting off the tube and was pursuing calories in each session, I was thinking less about swallowing as PT that needs to be done often over swallowing a lot of food at any one session. I guess I'll just have to live with the d**n tube for a while longer.

Nelie

Nelie,
I have been following your posts and want to let you know that it does get better it just takes time. When I got the tube removed I didn't care what I had to do to get it removed I wanted it out. It had become like a thorn in my side and others commented on how I favored my left side and held my arm close and kinda really held my stomach. It hurt when I laughed and coughed.

I would drink the nutrients and try to eat reg foods. I would drink the ensure or walmarts equate (350 cal.) (and still am supplementing with them) to help keep up the calories so I wouldn't lose to much more weight. When I felt that I was ready I asked my ent to remove the peg. I lost an additional 10 pounds in 2 weeks after the removal and decided to drink more of the equate.

I have tried a variety of different soups and frankly have gotten tired of the soup deal!! I have put back on 4 pounds in the last 4 weeks. Everything you describe about your situation sounds so familier. I haven't had an actual swallowing test done. They just looked down my throat with a camera while I said "EEEE" and explained how parts of my throat was still swollen. And I do believe that swallowing to much solid food could aggravate the inside and make it more swollen so back to the easy soups!!

I have noticed that things are improving very slowly I can eat some meat in the soups but very little. The Turkey pot pie soup was actually the first soup that had the meat in it that I could eat.

I got so tired of people eating around me that I just couldn't take it any more so last Monday night my son wanted something from a fast food restaurant so I got a small cheeseburger and med sweet tea. I was so scared to eat it but wanted to give it a try. I took a small bite and a small swallow of tea and it went down! It was not very easy but i did it!!!

Eating to me is work and really wears me out!! So I do depend on the equate for the calories. It doesn't taste good but what does? My tongue burns at anything sweet except for the sweet tea. I am hoping and praying that things will get better. I still can barely get 2 fingers in my mouth!!!

WE just need to keep trying things and working at it. You have much more drive than I do so I know that you can do it!! It is a shame that everyone has to go through so much!!!!

Take care and you stay in my prayers you are an asset to this site!
Love Terry

thanks for that post Terry, you're in my thoguhts and prayers too--you're like my sister in swallowing recovery! I've been wondering how you are doing. I'm getting really sick of soups too. I would give anything for a bite of a cheeseburger!

I keep thinking about things like chesseburgers that I used to eat without a thought (except for worrying about gaining weight!) and I wonder if I'll ever enjoy again.

Probably it wouldn't be a bad thing for my health if I could never have a cheeseburger again :rolleyes: but there are lots of other things that aren't quite so fatty that I also miss. It's funny, when it was hot out I craved salad and fruits and things like olives but now that its cold and snowy and the days are short I'm craving fatty/cheesy/carb-heavy foods like cheeseburgers and pasta. Same cravings as usual even if I can't do anything about them!

As far as stretching your mouth, would your insurance cover a therabite device if your doctor prescribed it? There's a page on the OCF site that describes it and why it's supposed to work better than the popsicle stick method. You can order one over the internet and if your insurance covers it they will bill your insurance after.

The speech pathologist who saw me before said he noticed today I had a definite improvement in my range of motion. It's actually an improvement of about 5 mm since I started using it, which means I can do two fingers with a little gap above them now, but it obviously has helped me somehwat (I've been using it for a month and 1/2).