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

I found a lot of very helpful information related to laryngectomy at this website http://www.webwhispers.org/. We have private insurance so can't help with Medicaid question. I will say that the first month or so adjusting was the most difficult from emotional standpoint but it does get easier so hang in there.

Thanks again, all! (and thank you, David for getting back to the issue) I'm still trying to work 8-5 and find I don't have a lot of energy or time but when I DO have a bit of time I'd rather spend it worthwhile. I'm finding that I am experiencing a low-grade sore throat for most of the day lately. Low-grade meaning to the average person it'd be about a "7" on a 1-10 scale) I'll be going to Winship Cancer Inst. (emory here in Atl) on Fri afternoon (pray for me?) and they'll probably suggest chemo (no more radiation is possible, I'm quite happy to know!)This is, I understand only a "temporary fix" as the larynx will eventually need to come out.
Should I expect the throat discomfort to continue until the chemo "kicks in" or is it to become my constant companion? What chemo is the best? (I'll obviously ask my new doc THAT one, too!) I don't mind the nausea but I'd like to continue to work for as long as possible (until very near the end, I hope!)
What is the recovery time for lymph node removal surgery (yeah-there's THAT issue also) but I figured just IT could be cut out and let chemo work on the larnyx area. How do I go about getting a second opinion from a GREAT doctor?
Okay, enough questions for the moment- if I don't get some answers with "meat" in 'em I'll probably re-post. Is that best? or just stay with this thread?
You guys are the experts here, and I'll do (most of) what you say. ;-)
PLEASE RESPOND IF YOU HAVE ANYTHING I NEED TO HEAR. EVEN IF I DON'T WANT TO HEAR IT!!!!
thanks again, EVERYONE and God bless. I need you guys. really

Gordon, I met a few people in California a couple weeks ago. They were all from the webwhispers website. Very nice group of people who all had cancer that changed their ability to speak. One woman used a microphone type thing on her throat to allow her to talk. The one man had a trach where he pushed on it to speak. Another man had a permanent trach that was put in under his skin. Im not quite sure how it worked but you couldnt tell he had any problem at all. So you see there is a positive life to be led after this procedure. If this procedure will save your life then it is worth doing. I wish you the best of luck with everything you are facing.



Barbara, nice to hear from you. I wish you well. Please dont be a stranger. I miss seeing your posts.

My husband had a lot more work done than just neck dissection and laryngectomy so your recovery will be quite different I'm sure. Even so, he recovered fairly quickly.

I have a book that I found helpful "Looking Forward...The Speech and Swallowing Guidebook for People with Cancer of the Larnyx or Tongue". Send me a PM with your address and I'd be happy to send it to you. No need to return it.

Gordon,
I posted a long response on your other string. Please read it. It answers several of your questions. And no, don't open another string when you don't get a response, that just confuses things. As I said before, there are not many members who have had this surgery, so don't expect a lot of responses on surgical questions.

Take care,
Eileen

Thank you again, everyone. I know ultimately we go through this whole ball of wax alone, but it really helps to have people who WANT (as opposed to feel like they "have to") help in any way they can. I'm still very nervous/anxious/confused/uninformed but really want to be able to get on with my life asap after/(during?) chemo. In reading some other threads/topics I see how lucky I really am-some of you have/still are walking through FIRE and face unimaginable challenges just to function reasonably well day-to-day. I still have EXCELLENT health overall, eat like a horse, and am able to work (sometimes HARD work) for 8hrs/day 5-6days/wk. God is suddenly granting me many new opportunities, friends, insights and inspirations to replace my feelings of hurt and confusion over the fact that my family/friends have shown little to no interest in knowing what is/may be soon going on with me. (of course I'm dramatizing-a few have) Suddenly opening many new doors and opportunities in my life that I had no idea I would ever experience. I plan to make the most of this golden time-I will try-no, I WILL give back-to you folks and this board that really has helped me so much over the years, to my fellow man in general who is carrying his own unseen burdens and sometimes is grateful just for companionship and an interested ear, but mostly to the spirit of God within me-within us all-that wants and is enabling us to reach the most lofty goals imaginable.
thanks again-you guys really are my angels. I'll let you know how tomorrow's appt w/the new doc goes.
gordon

Well, the appointment went about as expected- it's more "spread out" than the surgeon feels confident in removing all-so I'll be starting chemo this week to try to shrink or at least stop new growth-they also did a chest CT, if that shows positive, I don't think surgery is the way to go-I've not seen anyone survive more than 6mos w/"it" in the lungs. Will find out more tomorrow....
I really have to hand it to you guys- the books that Gerri sent and the webwhispers site are phenominal! Your support is instumental to my continued health.
more later...
gordon

Hi Gordon - I'm sorry to read your latest news. I've had you in my thoughts and continue to send postive energy your way.

Dr. Itzhak Brook, who posts here, is a physician who if I don't miss my guess went through what you're facing. He's written a book about his experiences and even recently posted a news segment about himself that was extremely good and inspiring.

I recommend you look at some of his posts, under dribrook.

And keep us posted per usual.

Courage!
David