Hi- I think I posted in the wrong area before-sorry, still new to this (even after 8 years!) Recent CT shows mass surrounding larynx and partially destroying hyoid bone. He wants to cut it-AND my larnyx-out, leaving me with a hole in my throat to breathe through (still don't understand why) and NO voicebox. I already speak with a barely understandable voice due to partial tongue removal last year, and it's truly been one of the most challenging experiences I've EVER dealt with. I can deal with dying-we all are going to someday, but to ot be able to communicate AT ALL absolutely TERRIFIES me. This is more (MUCH more) than I signed up for, folks!
ANY advice, experience, strength, and/or hope would be GREATLY appreciated and read with fervor.

Sorry to hear about your possible voice box removal. I understand what you mean. I used to say I thought I would rather die than have more of my tongue removed or more extensive surgery. But a few weeks ago I was told I AM going to die. I am terminal. And believe me, I wish they could cut out anything to keep me alive. You really do not want to hear that diagnosis. You have the strength to do whatever it takes to live. And, by the way, I have a friend who just had his voice box removed and he communicates a LOT. You will too. Good luck to you.

My heart truly goes out to you, you wonderful Bloop. Your experience makes mine look like a walk in the park and even at this stage you are STILL reaching out and giving true hope-probably the greatest gift one human being can give another. May you live, truly live each day until you pass and may God bless you and keep you in the palm of his hand next to his heart.
I'm sobbing right now...for you, me, the whole lot of us that inevitably will go back home, but mostly for the Strength you have exhibited-of mind, body, and MOSTLY, spirit.
Love to you, my friend.
Gordon

Bloop - you really are a wonderful inspiration to us all! Thank you for the gift of hope you give all of us. And, gpk - you CAN communicate! Shortly after surgery when my son could not speak, he communicated with his laptop in big letters so the people around him could see what he was saying. There is also a projector that can be attached to a laptop so that whatever you say will be projected on a screen either behind you or in front of you. I used it in my teaching at the university to put up assignments or other material my university students needed to know.

My husband has had tongue and larnyx removed and is unable to use a TEP. He can use electro larnyx with the straw on the roof of his mouth but he prefers to use the "Speak It" app on his iPad and iPod. This is a low cost alternative to other devices offered after his surgery. Texting is another frequent method of communication--thank goodness we live in the age that many people also use this.

All this takes some adjustment but it works and he is here.

Thank you all so much for these glimmers of hope! I'm trying to convince myself that losing my larnyx is not necessarily the end of my world-and this helps. I know OCF must have TONS of info re the proceedure(s) involved, but can anyone offer suggestions of other sites?
Also does anyone know if Medicaid/care will pay for any/all of this? How would I go about researching that?
Please, anyone feel free to make any suggestion-no matter how simplistic it might seem-my mind seems to have stopped functioning when it comes to thinking about this matter and CONFUSION seems to be my most apparent quality right now!

WOW, isn' that Bloop just the greatest person you have ever known, even though it is through our Forum and not personally? What spirit, what courage. Bloop, you're just the greatest!
Hugs from julieann

Hey Bloop, I was thinking about you yesterday and was wondering how you were doing? You got the cruise planned yet or what? Glad to see you are still here and on top of your game lady with keeping everybody informed and with your kind and thoughtful words. Don't give up the fight! Peace to you.

Bloop you are one amazing woman! I so admire your strength and courage. I am praying that you prove the Doctors are wrong. Hang in there and keep up the fight! We are all here for you.

Love,

Shelley

Bloop, you are indeed amazing and a constant source of inspiration.

Gordon - wish I could offer something concrete here! I'll have a look around the 'net today and if anything pops I'll post it or PM you. Meanwhile, you're right, there's tons of stuff here at OCF. When you feel up to it continue your search... but try not to let it obsess you! (I know, I know - that's easy for me to say...)

David 2