This is really a comment/question/whine/search for whether others have been in this spot that's more about the psychology of being where I am than any medical advice I'm needing.

Since I've been back at work, I'm having a really hard time doing everything I need to do to maximize my chances of being able to swallow again. Here's what I have to do every day:

I need to stretch my jaw using the therabite & times a day. I am doing the high-pitched squeal throat exercise aiming for 4-5 times a day. Then there's the swallow holding your tongue exercise--2 times a day, and the Shaker exercise, which I found on the web and decided couldn't hurt to add too (I am calling it "neck sit-ups" in my head now since I realized how HARD it is for me right now to hold my beck uo for 1 minute, let alone do 30 1 second reps)--whcih should be done three times a day.

Then there is half an hour, 4 or 5 times a day, of just swallowing some liquid or other. Coffee in the am, soup and juice in the afternoon, hot chocolate at night. I can't do much else when I'm doing that ebcause it takes so damn much concentration and I still have the tendency to inhale things at times.

Then there's mouth care--tooth brushing at least 3 times a day--gargling with biotene mouthwash a few times a day and I am back to gargling with the magic mouthwash (but not swallowing it usually) to prevent more thrush.

And neck care: heating pad around the neck am and pm to keep the msucles loose and putting cream on the scar twice a day, and stretching my neck twice a day at the advice of the physical therapist.

THEN there is the time it takes to feed myself through the tube, including grinding up vitamins and washinbg them down, 7 cans, three glasses of fruit and veg juice, and pills. I bascially need four sitting a day of about 1/2 an hour each (by the time I get myself settled, grind up the pills, flush the tube at the end, etc.)

Just the feeding myself and swallowing stuff is 4 hours a day. the other exercises add easily another couple-three hours when you add up the time. And on top of that, I have at least 4 hours of physical therapy/therapy/couples counsleing every week, let alone if I go to the dentist, the ENT, the oncologist, the rbeast surgeon (all of whom I've seen in the last month). And my physical therapist wants me to see a chiropractor for a couple of times a week for a little while too. And since all of the exercises are spread out I have to CONSTANTly be interrupting whatever else I happen to be doing.

So we're talking about 6-8 hours/day to take care of myself. And I'm trying to work full time on top of that. My work schedule is incredibly flexible--I have usually around 4-5 hours of committee meetings every week and 4 office hours and other than that I can work whenever and whereever, thanks to teaching online and a laptop. But even though it's flexible, I still need to be putting in a minimum of 35 hours a week to stay caught up with grading and all the other stuff I do (committee work, etc.)

And I am having SERIOUS time management issues about all this (add to this that I've packed and unpacked everythiung in my study to move it to another room in our house at the request of my husband and am also trying to finish repainting/ fixing up a bathroom at home on the weekends). I feel like I have NO free time and I often find myself exhausted in the evening at around 9 pm thinking "I still have to do 2 more jaw strecthes, swlalow hot cocolate for 1/2 an hour, then feed myself 2 cans and sit up for half an hour after that with a heating pad around my neck"

And the thing is I feel well enough, it's easy to forget about doing all this stuff. But if I forget I may doom myself to the tube forever.

Has anyone else been here? How did you keep yourslef going? I am finding I have to write out a schedule for every minute of my day to stay o track with stuff. And I just hate how overloaded it all makes me feel. I'd like some time to just relax and enjoy things right about now!

Nelie

Hi Nelie. Are you able to swallow any food? Do I understand correctly that you still have a peg tube? I fought that peg all the way through radiation & demanded it out the day I finished 35 IMRT sessions. I lost 50 lbs over 4 or 5 months & over the last 1 1/2 years have put back on 20. I still cough sometimes when I eat if I lose focus like you describe, but can eat anything I put my mind to for the most part. I definately choose my foods for ease of swallowing characteristics & mix bites of harder to manage foods with sauces, dressings or whatever. For example, I love chicken teriyaki. The plate with 2 scoops of rice, green salad w/ranch dressing & the grilled chicken. I eat it a couple times a week cause I get extra dressing for the lettuce & also put it on the rice. The teri sauce helps the chicken go down. I put hot sauce on also & I think the spiciness makes my throat create mucous which helps! I find that I hold my breath while eating or should I say swallowing. Eating does take a lot of time & effort & sometimes I just skip it altogether cause I'm too busy. I seem to have learned to adapt & I do mean adapt. When I drink water, I chug a whole glass without breathing until I have swallowed completely & swallowed again to make sure & clear the throat & then I breathe. I feel very fortunate. I know a lot of people have a lot more trouble than I do. I'm extremely bullheaded & would not let go of trying to be normal, ever. I drove my wife crazy. I was sipping water 2 weeks after my trach was out & coughing a lung out even when the doc's told me not to. I put clam chowder through the blender & drank it instead of using that frikin' peg. I forced myself to do alot of things the doc's told me not to as far as swallowing. Anyway, I'm ranting. My work involves lots of physical activity & I force myself to push my neck everyday & still have to stretch all the time & it still feels tight & uncomfortable. I'm self employed & sell & install custom home audio & home theater systems & do light construction, so I stay pretty active. Like I said I find that I skip meals alot because of all the extra effort it takes. Maybe that's why I haven't put all 50 lbs back on! Keep yer chin up Nelie! Maybe don't think so much about it & just do it & it will become less tasking. Erik

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.

Nelie, just a thought from this 65 yr old "Type A" personality-perhaps you are trying to do too much in too little time- take care of YOURSELF first and the rest will fall into place. You are over-scheduled and "You" are falling through the crack. Amy

Nelie, I remember my physical therapist having me do some swallowing strengthening exercises. If I recall, chin down towards my chest & dry swallowing as hard as I could to 1) build strength in those muscles & 2)stretch those same muscles. It's kind of a tough exercise to do even now. I realize that when I'm eating I keep my head down when I'm swallowing. My 2 youngest girls, 10 & 11 made the family dinner tonight. Chicken nachos! I managed, but I had as much mango/peach salsa & sour cream & diced tomatoes as I did nachos to make it go down! There wer'e quite a few very hard swallows & a couple of glasses of milk during that meal! I did not do much talking & was most certainly the last one done at the table. I was doing a lot of breath holding. You have been through a lot more treatment than I have with breast cancer & all. I am trying to be encouraging for you. My ENT says my throat is always inflamed because of the radiation & always will be tender. The other day I took a drink of hot coffee & in the process of doing the hard swallow thing burned the crap out of the back of my throat while sort of holding it there till I could swallow it. Like I said, I'm pretty bull headed & I love my coffee with cream & brown sugar! I do wish you some forward progression. We all heal at different rates & I hope yours speeds up. Erik

Nelie, give that tube a nickname and look at it as an intregral part of your body right now. It is helping to keep you alive-quit hating it! I occurs to me that if you were fighting this disease 20 years ago, without the advances in treatment today, you could very well be on the other side of the grass as Brian likes to say. By your own admission, the tube is allowing you to get on with life and recovery.

Erik. no offense, but I will not print your posts for John to read because his Doc has told him not to put anything down his throat until given permission because of the danger of aspiration. He is as hardheaded as you and I don't want him to get any ideas that he hasn't dreamed up already about taking charge of his treatment. Stay well, Erik. Amy

Nelie - Your schedule has a very familiar ring. Like yours, my schedule is facilitated by the flexibility of online teaching. Many of the excercises I so beieved in came to be of little aid in my recovery. My jaw did not recover much mobility despite my torturing it with the thera bite. It helped stop the losses from getting worse, but I didn't recover much. A few squeezes a day seemed to do the trick.

Grind your meds and toss them into your water bottle. I used to make such a ritual out of taking pills. What a waste of time. Now I grind em all and put them in my first pint of water or juice for the day. Trust me, your body won't know the difference.

My neck exercises did help restore some flexibility, but I have discovered that occasional neck stretches while I read or type are just as effective. The rigid schedule I tried to follow, now seen in hindsight, was not terribly important. Just stretch whenever you remember to do so - I stretch before I eat.

My senses of taste and smell were both lost to the ray gun, so I will be living by my peg tube for the forseeable future. Many others have told me that strong taste and smell are essential to being able to take sufficient nutrition orally. Fight the good fight, but make those exercises fit into YOUR life routines - not the other way around. Nothing helps your swallow as much as swallowing. Sips from the coffee cup, juice box or water bottle during the day may turn out to be more effective than the scheduled exercises.

Look to your peg tube sessions as a chance to relax. I pour as I correspond with students - feet up, shoes off, slightly reclined. Very relaxing. Think of all the junk food that WON'T go through the tube!!

Make your rehab fit into the schedule YOU want. You will likely have all the benefits available from it within a few weeks anyway. Don't make yourself crazy trying to get back to normal. Normal is gone. Besides, normal is boring.

Don't wait for rehab to get on with life. Continue filling your world back up with your stuff. Make those other things wait in line, fit in or go away. Life is now, not when flexibility returns. I hope some of these ideas help. Tom

Aaargh. I had a longish reply written to this that just got lost in the cybervoid....

Tom, I really appreciate your response to this because I know you've been there and done that. Am I understanding correctly that you are on the tube still more because of loss of taste/smell than ebcause of inability to swallow? I actually still have my smell and most of my taste, I just can't swallow anything solid (which includes pills-I've been grinding them up and flushing them through the tube since treatment) and have a problem even with liquids.

I guess I'm just wondering if anyone else has had this happen--it seems very uncommon and I worry it's ebcause I went to a new radiation facility. Too late now, I guess, but I'm interested in other people's opinions about how often this happens and whether it could mean the raidation plan was messed up. Also I'm thinking maybe I should go to a really top-knotch swallowing clinic. Does anyone know of one? If I have to accept being on the tube for the rest of my life, I will, but, just like my initila fight with cancer, I don't want to feel, a year from now, like I haven't tried as hard as I can to get back to nontube eating.

Of course I'd love to eat "normally" but honestly I've given up even hoping for that. I'd just be happy with being able to swallow some soft foods and swallow liquids better (right now I can't even swallow liquids well enough to dirnk my meals each day). I don't hate the tube, Amy., as you suggested I'm grateful it's kept me alive. But I do have some life goals, such as travel to far flung places, that don't seem all that compatible with needing to be tube-fed. Pretty difficult to haul ensure or jevity around with you, though I'm sure there are ways ti manage it if I need to.

If I can eat soft foods, well-cooked veggies and noodles/pasta I'm sure I could do just fine anywhere I go. But even that seems like it's a long way away, if it ever happens, right now.

I won't keep up this schedule forever if the therpay doesn't help but I need to feel I've done everything I can. Tom, I may have some more questions for you later but I have to run right now.

nelie

Nelie,

You need to get to an expert on swallowing and find out why you can't swallow. You have one? Ask another. Finding, and visualizing, that happy place where no one can swallow is not the answer. There has to be reason for this problem, and the doctor should be able to articulate it to you. I will not get into the PEG issue, you all know I had none. I had the full treatment, standard radiation, mandible resection, forearm flap reconstruction and modified neck dissection. I eat a completely normal diet. There is a swallowing disorder clinic at Yale, let me know if you want their contact information, I'll dig it up. You should only be going through this as a last resort, not as a matter of existing.

Glenn

Glenn, Yes, I'd be interested in the Yale clinic information. Cathy, I got your private message but it wouldn't let me reply to you--apparently your private message mailbox is full. But yes, I could definitely do another trip to Boston (even a few trips) if it would help me get back to swallowing more normally. I'll look up MEEI on the web but I'd appreciate whatever you can find out too.

Nelie

Amy, I am sorry you think I would be a bad influence for your husband. I have always questioned ALL the answers in my life & will continue to do so. I do not mean to say I have the answers by any means, but there are always many more ways to get things done, if you you seek them out. I have always joked about the fact that it's easier to ask for forgiveness than asking for permission! This attitude has served me well in my life as well as my fight with cancer & figuring how do to adapt to my new life. It is my nature to overcome, to do things my way, to take charge. Optomism is the key to my happy life & well being. Alot of doctors do not have all the answers & have actually given me some bad advice, not all, but some. You do have to be your own patient advocate & take charge of your own treatment, do what feels right & not just accept the answers sometimes. Tom got it right I think. Use it or lose it. Keep swallowing or lose the ability to. A year and half ago I could not lift my right arm above my head to rinse my armpit in the shower from my neck dissection. I would walk my fingers up the shower wall until I felt it was high enough, everyday until I could do it without the finger walking thing. I could not reach across my desk & lift the stapler & now I can. The doctors kept telling me to take it easy & be patient & I just kept trying harder. They said I'd be out of work for a minimum of 1 year. I was back to work full time in 8 months & worked part time off & on throughout treatment. The mind is a powerfull tool & will do exactly what you tell it you can or can not do. It has been proven throughout human history. Half full or half empty. Where there's a will, there's a way. I'll get off my soap box. I am only trying to be inspiring. For me sometimes if I just hear that one little thing, it makes the difference between trying or not trying. My best to all. Erik

Erik, my remark about not giving John your post was sent with a smile. I admire your courage-just don't want John to get ahead of himself, as we are 60 mi away from the nearest emergency room and I dont want to deal with aspirations to his lungs at home. I do admire your grit and determination. Amy

Nelie, I get mixed messages from the medicos about my swallow. I am able (on good days) to swallow shakes and some soups. I cough but don't seem to aspirate. I have little or no smell/taste and its surprising how important those are in the mechanics of eating by mouth. Instead of it being a satisfying and quenching experience, its just kind of an awkward exercise - that I'm not very good at!! I would never be able to swallow enough of anything to get enough calories to sustain myself.

Swallowing is a real struggle, and there is no satisfaction from it for me - its just cold stuff or warm stuff sliding down my tortured throat. Pills get stuck in there, so I grind em, and peg em. I think I fought the good fight to recover my swallow, but only got a little of it back. Perhaps I will continue to gain function as the calendar passes - it seems a bit easier now than it did last year.

The jaw mobility is my biggest concern. Nobody told me about radio+jaw muscles, or losing jaw function and I was way out of radio before I learned about the thera bite. Had I started with it sooner, I might have preserved more function. The up-side is that no calls me "big mouth" anymore!! (I can barely get a slender upper denture in). Email me if you like. I'd be delighted to talk with you further. Be strong. Tom

A follow-up to my work on trying to regain swallowing ability. Last week I had both another swallowing test with my ENT and the speech pathologist that works with him here AND got an additional evlauation by an ENT in Boston that Cathy G. (thank you again Cathy) helped get me connected to, who only treats oral cancer patients, just to be sure that everything that could be done was being considered in terms of trying to get back to eating semi-normally.

The good news (which I don't take for granted, believe me) is everyone agrees there is no signs of recurrence.

Also good news is everyone agrees I sense it when things go down the trachea and cough hard to keep them from getting into my lungs, which gives me good protection against the worst effects of problems with aspiration.

The ENT and speech pathologist here, surprisingly to me, said my throat looked somehwat better (I don't know why this should surprise me so much, it has been 3 mos. since the last test, but I just feel like swallowing is just as hard as ever) but that there was still lots of swelling and there is an area in my throat (they said the name of the muscles/structures there but I forget it) that is more constricted than it should be where liquid that I swallow pools up then I have to cough it back out or it goes down the wrong way. They tried a swallow with pudding and that actually went down a little easier than the thin or thick liquids--less pooling in this spot in the throat, so I am now allowed to add pudding-textured stuff (had to be smooth, like plain yogurt) to the list of stuff I can try to swallow.

The speech pathologist referred me back to the speech pathologist at the hospital to work with him on a number of exercises that she thinks will help my muscle control and swallowing strength(not sure why this didn't happen before). My ENT suggested a surgery that would involve using an endoscope and stretching this area that is constrictd and causing the pooling as well as giving an injection of botox to a muscle there that would cause it to relax more.

The ENT in Boston didn't think that last idea (the surgery) would work all that well (unfortunately since I would gladly undergo more surgery if it would help me get back my swallowing ability) and he also referred me to a speech path. there I will make a trip back to see who works entirely with swallowing issues related to head and neck cancer treatment, to be sure I'm doing everything I can that might help.

Beyond that, though, this ENT in Boston pretty much agreed with what my ENT here has been telling me but he helped me understand a little better why I'm having so much trouble swallowing. It isn't one thing--it's a series of things.

1. I have restricted mobility of the front of my tongue. Some of this is because I'm just missing about 1/3 of my tongue but it means that I have difficulty forming food and liquid into a bolus, which is work that is normally done by the front of the tongue. (This can be improved through speech path swallowing exercises)

2. Even when I do manage to do that, and the liquid/food goes to the back of my tongue and gets sent down the throat, I have swelling in my throat that catches stuff where it shouldn't. (This may heal up more through time or may not--may always be there from the rad and chemo)

3. Even when stuff gets past the swelling, I have lymphedema at the base of my tongue so it is very swollen compared to a normal BOT and can't move the way it should to help stuff go past the epiglottis. This *might* be helped by lymphatic drainage massage or may be something that never goes away.

4. Aside from that, the muscles that move up in your throat which move the epiglottis down to cover the airway aren't working strongly. This can be helped by speech pathology exercises.

5. Aside from that, even if my epiglottis could move normally to cover my trachea, it appears that it is shortened--some of it was just worn away--from the radiation (although since no one did a test on me prior to treatment it is possible it was just congenitally short-- but unlikely) and this can't be fixed but will always pose some danger for aspiration.

So there you have it. The Boston ENT did say that as more people are getting concurrent chemo/rad treatment for oral cancer (which only became the norm a couple of years ago), they are seeing more swallowing problems following treatment. He didn't mention any signs that I was treated with an especially funky radiation plan or anything (which helps me feel better about choosing to go to the rad. facility here), it's just that radiation, especially combined with chemo, can cause some nasty permanent problems for some people.

He seemed to think that with lymphatic drainage massage to try to help the BOT swelling go down and work with speech pathology, I could improve my swallowing well enough that I can get off teh PEG tube eventually. But he said even with doing all the work I can do "you won't be happy with where you end up". I'm hoping that doesn't mean everything ahs to be the consistency of a shake for the rest of my life and that mayeb I can still hope to eat pasta with sauces, soft eggs, really well cooked veggies eventually. Even if I gett here though, I will still really miss the rest at times.

I miss salad. I miss garlic bread. I miss ham and cheese sandwiches. I miss blueberry pie. I miss plums. Oh I could go on and on....but I have to go grind up my morning pills and pour Jevity down my tube

Nelie.....there could be a physcological aspect to it.Maybe you are terrified of choking on the food or liquid while swallowing & involuntarily restrict your muscles & this could be disturbing the process of taking in.

I've noticed that when i'm eating alone,i'm so relaxed & i actually take less time to finish & need few gulps of water,whereas if i'm eating with people around i'm so conscious & i've problems getting the food or sometimes even liquid down.

Another thing i've observed is, if i take small bites & swallow using small gulps then i can't finish my meal as my muscles are tired halfway.I normally take big gulps & swallow with force.

another thing is that,if you are not ready to swallow & liquid goes past then you'll cough it out.I've had total glossectomy & only a little bit of tongue remaining(not visible in my mouth)& my flap is like a fixed base that doesn't move & initially i've had similar problems.Even today if i've swallowed some food or liquid & there's a little remaining which goes in when i'm not ready to swallow(as i need an interval of few seconds between the gulps) then out it comes.I think there's some kind of coordination between taking in food & swallowing it & if there's remaining, then making sure that you keep it in the mouth until the next gulp or in other words when you are ready to swallow.I don't know if i'm making any sense here,it's like eating like any other person from the outside but inside only taking in with gulps which have interval of few seconds.

If there's heavy stiffness(i've had neck dissection) around my neck,which sometimes happens if the weather get cold or if it starts raining then i have problems with swallowing as the muscles feel restricted & tired.

Food with thick sauce or gravy is so much easier.For example soup with soft & small pieces of vegetables is difficult(not impossible),whereas noodles with vegetables in a slight gravy(no need to make it very watery) is easy.The way it works is,since the soup is watery it goes straight in & the vegetables get stuck,whereas with noodles the thick gravy drags the noodles & vegetables inside with it & makes it easier.If there's noodles,all i do is take some corn flour(doesn't alter the taste) & dissolve in warm water & add to the noodles & warm it up.

I do think the swallowing process gets bettter with time.I actually keep a diary of my eating habits & with time the swallowing has improved & i've been able to include new recipes in my diet.

If i can manage soft food like pasta,noodles,well cooked veggies,rice & etc with a total glossectomy,then i'm sure you can do so much better!!

Jill, I really hope I can end up doing as well as you or better! Even though I feel like I have a better udnerstanding of the mechanics of why nothing wants to go down right now, and I certainly have a willingness to do whatever I need to to help make it better, much of this is still a mystery to me--why someone like you with a total glossectomy can swallow better than I can for example! Although part of that may be the degree of lyphedema I guess. I know that can vary enormously when women have breast cancer surgery to remove nodes under their arm and I don't think i realized how it could effect swallowing(because it's mostly affecting my tongue where I can't see it--although it also explains why my upper tongue sometimes feels larger than it once was and rubs against my teeth and gets irritated).

I do try to stay optimistic about improvement because I do agree psychology has to be part of it. How long has it been since you had radiation, Jill? Did you have chemo too?

Hi Nelie!

It's been 1 yr 8 mths since radiation & I haven't had any chemo.

Hope the swallowing does get better and keep on staying optimistic.