Nelie,
I'm so glad things are looking up for you!
Baby steps, then we run!!!

Andrea

Nelie,
That is wonderful news. You've been through such hell with the side effects from radiation. While lots of water is good, it doesn't have any calories. You need to find things you can drink or sip on all day that have calories. You might try apple juice or flat ginger ale, coffee with lots of cream and sugar or a beer. Acid things will burn for a while. Here's hoping you will be able to eat some more stuff soon.

Take care,
Eileen

Nelie,
My heart goes out to you. You can handle any needed dilations- piece of cake compared to what you have been thru.Gil has had 29 dilations and continues to have them done weekly. He missed a week over Christmas and he has had 3 since then and is still He gets very sad BUT he can eat tiny bits of food- pancakes, scrambled eggs, meatloaf- but he also has things that get stuck.
What do you most crave? Chocolate? let it melt! I'm so happy for you.
Paula
caregiver to Gil

Nelie, You are one tough and determined lady! I'm glad for you. Amy

Paula, Alas, chocolate does not taste "right" to me anymore. I made some really gourmet really chocolate-y hot chocolate last night, brured my tongue trying to drink it (ouch--like my tongue isnt' messed up enough already), and was very disappointed in the taste. I just had a good size bowl of mashed potatoes with lots of turkey gravy, thuogh, and it tasted pretty good to me.

I still am having a problem with anything that has any solidity to it--even scrambled eggs! Sometimes it seems to go down OK but then later I cough it back up (I think because it is getting stuck on the little pocket my epiglottis makes. But I'm hopeful that maybe with some work with a speech pathologist I can learn how to deal with that.

HOnestly, my worse problem right now is I have bad trismus and when I stretvh my jaw with the therabite, I get jaw cramps which can be quite painful--though they don't last long. I'm assuming this is part of what I need to go through to get more range of motion and am trying to just deal with the cramps. MY ENT said the only medicines that help would be a muscle relaxer--which tend to really wipe me out so I'd rather not take those.

Nelie

SO, last week I had a barium swallow test (here, not in Boston) as well as an MRI that was part of what my ENT wanted for oral cancer followup.

First, the barium swallow results--showed an area where there was an narrowing of the esophagus (stricture), though not complete. Also showed I'm having problems using my tongue to move food to the back of my mouth right. Also my epiglottis isn't moving down right to cover my trachea. I asked the speech pathologist for exercises and he gave me one then and there and just mailed me instructions on the Sharer exercises, which I will have to add to my jaw-stretching ,swallowing, tube-feeding schedule but which, according to the article, is fairly effective at restoring swallowing ability!

In the meantime, this week I had a followup appt. in Boston with the thoracic surgeon who took the stent out of my esoph (and put it in last July) and scheduled another dilation for a week from Monday because I can feel that I'm not able to swallow as much now as right after the surgery (and it's only been 3 weeks since the surgery)!

My ENT here called about the results of the barium swallow last night and he mentiond that he has worked with patients using a (I am spelling this phonetically--didn't get the spelling) "Boo Jee"--which apparently is a device patients can learn to stick down their own esophagus daily (kind of like sword-swallowing he said--though not sharp) and stretch it--or keep it from tightening I guess. He said he has seen it used with patients who have strictures from radiation so they don't need to keep having surgery for dilations (he did a residency at a place that focused on treating head and neck cancer patietns so I'm guessing this is where he's seen it used?). He suggested I ask the Doc in Boston about this and I will, but I am wondering of anyone here has heard of this or used one. The idea of sticking something that far down my throat sounds first of all--difficult! I have a pretty strong gag reflex I guess I'd have to learn how to control. On the other hand, presenting it to me as "learning sword swallowing" makes me kind of intrigues to think that I could learn it. And I would be willing to try learning how to use it if it meant avoiding monthly surgeries in the future. But it also sounds like it might be dangerous. Like you'd want to be trained in using it in a safe way.

THEN there was the MRI results. Sigh. First, they did the wrong MRI-- a scan of the brain instead of the mouth and throat. My ENT was not happy about that. But, the new news that is boggling my mind is that this brain MRI I wasn't supposed to have has shown a benign tumor--a meningioma of about 2 cm. Of course, it was the radiologist identifying it as such, not a neurologist. So now I have to go see a neurologist. I have just spent a good couple of hours researching these tumors on the web and the good news is they are almost always begign and very slow growing (they are actually tumors in the lining of the brain, not the brain itself). The bad news is eventually, if it keeps growing, I'll probably need surgery to remove it. I have no symptoms yet, except that my physical therapist who was doing massage that staretd on top of my head always remarked that the area of my skull that it turns out is over this tumor felt less flexible than it should be.

Have I mentioned here that I also found out I have two humungous kidney stones in my right ureter from the CT scan I had two years ago when they were staging my cancer? But my kidney function is fine (it's been tested several times since then), I have no signs of infection or pain (and the stones are too large to actually pass into the kidney), I'd never know they were there were it not for the CT scan. But now I have a urologist who wants to do surgery to remove them.

Am I wrong to think that if I have no symptoms maybe these surgeries can wait? Its not like I don't have my hands full with mammogram and ob/gyn checkups every 6 motnhs because of the breast cancer past and dentist/ENT/MO checkups every 3-4 months, and throat stretching in Boston every month, and work on swallowing with the speech pathologist, help with jaw cramps and neck spasms with the physical therapist thanks to the oral cancer past and treatment. The imaging technology we have available to us definitely is a two-edged sword (and maybe I'll learn to swallow it!)

Nelie

Nelie,

It's clear that you are not having fun lately, but the silver lining in these dark clouds is that you might find yourself preparing for a new career:

http://www.swordswallowing.com/

I remember reading a book by Daniel Mannix years ago where he joined a circus and one of the things he learned was sword swallowing.

Hang in there!

Nellie-
The MRI is a good mistake- new health issues- but they are doable. Hopefully they can be put on hold so you can get the therapy to continue to make progress on your swallowing and eating. At " our certain age" you should only have small wrinkles and a little stiffness. Hey dear lady- you are slaying fire eating dragons. and whomping them off the cliff.
Come better weather I am driving to ithaca(only 2 hours) and treating you to lunch!
Stay in the now- and you are swallowing- a long upward battle from when I read your posts last march.
Paula

"Come better weather I am driving to ithaca(only 2 hours) and treating you to lunch!"

I'll definitely take you up on that come better weather, Paula.

That's a promise. I hope you have a smile.