Well off to take another Barium Swallow Test. I did not want this but Georgetown CCC insists on yet another one before they will start me on VitalStim therapy for my swallowing. I have not seen any improvement since the surgery, in fact I have gone backwards due to the additional radiation and chemo afterwards.
At least this time failing the test will not be so depressing.
My one hope for feeling better is that I will be getting a palate drop (sort of like a retainer to put in my mouth so my tongue can touch something) this morning a couple of hours before my barium swallow test. I will push them to test me with and without it so I can see instantly if it is helping me. Update you all during tomorrow's insomnia
charm
PS. go to the general forum and read the Cancer Award sticky and VOTE for OCF

I voted, I hit all the "helpful" buttons and I'm wishing you luck with your swallow test. Look forward to your next insomnia post to let us know how you're doing.

Cheryl

Good luck Charm

I have a prosthesis attached to my denture which accomplishes the same thing as your "palate drop". My 1/8 of my tongue doesn't move much so this prosthesis allows me to speak clearly but I stil eat and taste much better with it out.

Hope this test goes well for you. And don't decide ahead of time what the results will be - I hope they surprise the heck out of you!

Donna

Good luck with the test and wear your good luck CHARM.

Jerry

Now even though the Catholic Church has "abolished" Limbo, that's exactly where I remain. I can not swallow even a morsel or crumb of food no matter how much I chew it. Nor can I swallow soup nor any liquid. It's unclear whether my exercises at forcing down a sip of water are just occasions of aspiration. (putting liquid into my lungs instead of stomach). The combo of more extensive salvage surgery and the unanticipated additional CyberKnife radiation and chemotherapy have put me into the "severe dysphagia" category. The Georgetown University "VitalStim" (an electrical stimulation of the muscles used in swallowing done concurrently with forced swallows) treatment expert called me and her negative expectations under the guise of candor were quite depressing. She is just being honest and echoing the separate grim prognosis of the Inova Alexandria Hospital therapist who warned me that the most probable outcome is now a lifetime on a feeding bag. Yet Hope springs Eternal so I went to my oconological dentist. He is more optimistic and made me a custom palate drop to help me swallow and speak but the radiation had changed my bite from the initial mold. So he took out the drill and made "channels" across two crowns for extra wires to run between the molars and hold it and took another mold. Next Monday I will go back for another try at fitting it. He is a wonderful Iranian in the old Persian sensibility who actually was involved in the start up of the head and neck cancer group at Lombardi Cancer Center. We canceled the Barium Swallow Test two hours before it was scheduled so I was spared the depression of failing it again. when I get used to the palate drop, we will reschedule it and do it with and without the palate dropThe fatigue from this second round of radiation far far exceeds the effects of the 8 weeks back in 2007. Guess pumping in 5 GY a day instead of a little under 2GY a day makes a difference in radiation's punch. Still I can now finish one hour of Pilates but I am toast afterwards. Oh well, the medical team now says if I keep doing the exercises and therapy PERHAPS I can "comfort Swallow" (sips of liquids, small bites of food) by Christmas. What a contrast to one year ago, when I was on the mend and planning to take off to Rome and Venice in September.
Still, I have my moments. If I nap enough the day before, I can muster up enough energy to go out. Last Friday my wife Bev and I hit the National Gallery of Art in DC and saw 5 , yes FIVE, exhibitions at the Smithsonian NGA East & West buildings with a break for lunch at Teaism ( I ordered a sweet Mango Tea and used a syringe to shoot it into my feeding tube and the lunch time crowd of self-absorbed hip Washingtonians never even noticed) so my wife Bev could have their Vegetarian Bento Box with Tofu, green beans and some spicy concoction. That next day on Saturday, we went to a couple's 25th anniversary party where I put some very smooth and expensive Tennessee Whiskey down my feeding tube.
Finally I am still struggling with the ontological as opposed to the oconological meaning of the Cancer coming back a second time requiring loss of speech and swallowing. Two of my most favorite pleasures (spinning tales and exploring new foods) are now denied me. My life has been a wondrous story of catastrophic events whose natural effects I have been miraculously been spared. When all has looked lost, redemption suddenly appeared. More reflection is needed to discern God's plan for me in this latest adventure.

Charm,

You may not be able to speak or swallow, but you sure can write! You are fortunate to have such a gift and maybe your skills in this area will become your "voice" and you can continue "spinning tales".

You certainly have added a lot to this forum. Thank you for that!

Catherine hit the nail on the head squarley Charm. You are very eloquent with the English language.

Charm,

You do have a way with the written word. When I see your posts, I always know that something intelligent, witty, and/or thought-provoking will follow. Your personality shines thru them and we can see the man behind the screenname.

I find it so amazing that with all the assaults on your physical being that you still manage to stay realisticly(sp?)upbeat. While I know that to some degree there are not a lot of alternatives to just "pushing forward," I am not sure I would have the strength.

It does seem that it boils down to what God's plan is and that we are, for the most part, not in control but I do hope that you see that you touch each and every one of us in some way and maybe right now, that is the plan.

Hugs and hopes for recovery of your swallow mechanisms,

Deb

Maybe God is challenging you to find new ways of expressing yourself, and challenging you to find new pleasures? I don't think we will ever - in this life - understand God's plan for us. There are somethings I have decided I am just going to have to wait to get answers too. There are too many true tragedies on this planet that have no explanation. Plus, God still has ALOT of explanation to do to me as to the purpose of the mosquito! Grrrrrrrrrrrrrrrr..............

Donna

Charm,

I agree wholeheartedly with Catherine in that you are a "Wonderful" spinner of tales and I will continue reading yours and everyones life stories. So sorry to hear your latest news but you are a winner and a fighter I only hope we have half the fight you have if this ever returns. And we are still in limbo healing. I know that God will reveal his true meaning for all we go through eventually, he always does. It just never happens to always be what we want and when we want it and I don't understand the suffering and struggle of so many inclusive of you. You seem to be a wonderful gifted human being, keep up the good fight and enjoy what you can. I have asked my daughter if she wants a shot or two through her tube at times but we have never ventured that far. Salute to you and yours.

Bonnie

Charm, you've been helpful and encouraging to me and so many others on this site. Do you have a page on Facebook? There are a number of members here who're there and it's nice to be able to put a face to a name.
Gretchen

Gretchen

Right now I am a Cyber Objector (similar to when I was a Conscientious Objector during the Vietnam War) No Facebook, no My Space, no Twitter, no IM, no Yahoo chat, no blog, not even a personal web site - too much to do in the real world so OCF uses up all the time I allot to the virtual world. If you want to see a picture of me, there is one posted with my review of OCF on Great Non Profits. I know you voted and THANK YOU. Here is the link to my review: Charm in ICU showing off free flap scar
For the rest of you reading this who have not voted: As Megan's sticky post asks, just go to
this link and VOTE: Vote OCF At the web site, you can also read some of the other 53 reviews, including mine with my ICU picture even. Less than 1% of OCF members have even bothered and we are getting crushed by a pediatric cancer group in our category.
Finally, thanks for the kind words. It is a two way street, this board and its members posts are better than a prescription anti-depressant for me. The incredible courage and pluck I read here shame me into silencing the internal pity party that nips at my mind every day.
Charm

I am so sorry to hear of the latest problems. You are quite the spinner of written tales indeed - verbal I can only imagine although the writing lends itself to "hearing" your voice as I enjoy your posts. You are one of OCF's biggest cheerleaders. Hang in there and know we are all pulling for you.