David

Thanks. You have spelled out the plan. I just did not expect so much graphic detail about splitting the jaw open, swinging it out and the attendant nerve and tissue damage. Plus what hurts worse is that soon I will no longer be part of the "Final Five" cylons (since we can count on one hand OCF posters who had radiation chemo with no PEG) as with a temp trach tube, I will need a PEG even after discharge from the hospital. Just spending 10 days in there sounds so daunting. Never thought that my aches and pains and problems right now would be transformed into aspriration goals for recovery. I do intend to get my two biopsies sampled for HPV and will be starting a separate thread on that seeking info on getting these to Gillian at John Hopkins as I am now inclined to think mine is NOT HPV. If so, it would butress the research on HPV being more susceptible to rad and chemo than "other".

I read your post about your ENT'S answers and I must say the answer to one of the questions set me back on my heels! What does she mean another 1-4 years? Did you check the bottom of your foot to see if there is a "best Before" date that you weren't aware of?

My surgeon didn't give any such time lines at my last surgery (Oct 23, 2007) and I guess I didn't ask. So many times I think I have achieved a measure of peace with my own mortality - something those on this site need to do - and then something like your ENT's answer sets me back and kinda annoys me. God will decide when and how.

Know I am praying for you. Sounds like a brutal surgery but I know you have the ability to look past this surgery as a detail requirement necessary to move on with the rest of your life.

Hugs

Donna

Donna

My ENT very emphatically did NOT want to give me any numbers or years. You have to blame me. I have over three decades of cross examination skills and my line of questioning was very indirect and in combination with my gambit question of "what if I don't do anything?" Her response which I did not include was "You would be a very foolish person since this is treatable and I have done the exact same surgery and worse on people who have survived." which opened up a line for "how many: 100- 200, etc until I boxed out an answer. While I am not Muslim, I always thought there was a very Christian concept expressed in the all purpose answer to questions like
Will the bus come at 4?: "GOD WILLING" they'd reply.
Just know that based solely on who she has operated on, no one has died before a year and while others with less invasive surgery are going on ten or twelve years, just so happens that similar ones to me have all been within the last 5 years. So definitely NOT PROOF just happenstance but Inquiring Minds want to know.

I could be wrong on this, but it's my understanding that the 'survival' threshold is actually based on five years without cancer. No guarantees about any of this, it's all based on statistics, but no one knows what factors are really important when selecting a representative population.

That's part of the reason for my look forward, not back, attitude (Anyone read about the fictional Joe Pike? A can-do guy with a red arrow pointing forward tattooed on each bicep -- I occasionally consider having them done myself!).

My late brother-in-law was a radiologist (Who died of side effects from treatment for Hodgkins Lymphoma -- His big regret was that he got it early enough that the current cures weren't available but he could see them coming -- Had he had the same thing ten years later, he'd likely be alive today) and we were discussing my mother's inoperable lung cancer -- Her Docs gave her only a month or so to live, but she lasted 1 1/2 years -- It's all really sophisticated guesswork when you get down to the bottom of it.

Charm, I don't know if you got this far back in your readings, but here's the link to my first free-flap experience, which sounds a lot like what you will be going through (except no bone-splitting was involved in my case).

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=75331&page=all

Don't forget to ask for ear plugs in the ICU to get some rest!

The PEG is really only optional for the chemo-radiation treatment -- Being a fundamentally lazy guy, I might hang on to mine for a while, at least until my food tastes come back because eating without the enjoyment is actually a bit of a chore -- Keeping up with my swallowing, of course -- Actually, growing difficulty and pain in swallowing was really what led me to discover this most recent cancer lurking away in the background.

[quote=Charm2017] JUST WHAT I NEEDED TO HEAR. [/quote]

Charm

I hope that is a good shout.

Yes I have speech/swallow therapy together. It is going pretty well. It can be frustrating when it doesn't go as quickly as I would like. I really like that we try foods in our sessions and I am not afraid because someone is there with me. Sometimes trying foods at home by myself is a little unnerving. You will have the benefit of not dealing with the radiation side effects in the middle of your therapy also. I had to stop for a couple of weeks during rad and now the slime is sometimes a detriment. Last night I ate an entire container of yogurt with a couple of pieces of strawberry in it and I am now eating some cream soups. Spinach lasagna and mac n cheese are my short term goals.

I had the temp trach also, but I woke up babbling. My sister and my ENT have been able to understand me since day one. Now that my flap is starting to settle in, my speech is improving also.

It will be OK. You can pick my brain all you want - here or in PM.

Keep your spirits up.
Patty

Pete

Thanks, I just read your link to your surgery. It was not on my list of questions, but my ENT said to count on a tracheotomy. All my surgery will be in the very back and bottom and not the front. Plus with splitting the jaw right in the middle and spreading it out (I think I saw that in SAW II or III or IV or V) in her experience causes so much swelling that I will need the PEG. Never even thought to ask but she was quite thorough. Excited that I just got the appointment with the oral surgeon/flap reconstruction guy for next week who is �triple� board certified and �Fellowship Trained� [Otolaryngology, Plastic Surgery and Dentistry] according to his web site but I trust my ENT's telling me he's the one I want
Thanks, I saved your descriptions to share with my wife to get her ready.

Post-op the hardest thing to deal with is the trach -- Since I live alone, they didn't want to send me home having to deal with the trach, tube feeding, cleaning the incisions, etc., yet they they didn't want to keep me in the hospital -- Hard to find a skilled nursing facility (aka SNF or 'sniff' in the trade) with a respiratory technician, esp for only a couple of weeks on short notice -- Compromise was my sister came out to stay for a week (would have stayed longer but she had a prior commitment of importance) and the hospital trained her (and me) in the full care of trach -- We also set up for a visiting nurse paid by Medicare.

In reality, I did all the care myself, as I knew I would -- I had done so for a short period of time following my first flap, so I knew I could do it again, even though it was more intense this time because it was a total glossectomy, not just a partial like last time, with throat-cutting on side as well as in front.

From my experiences over the years, I know I recuperate much better at home on my own schedule than in hospital.

It helps that I have a food pump that I bought on EBay last time so I could set it up to pump very slowly because I was having problems taking the food in as fast as I had during- and post-radiation -- BTW, I used Nutren 2.0 (500 cal/can, by Carnation) to pack more calories in fewer cans -- I now dump two cans in the bag and take a nap while I "eat" -- The Nutren is drinkable with the addition of NesQuik chocolate drink -- Sadly, VHC is not considered a tube nutrition so isn't covered by the insurance.

Medicare also paid for the machinery to support the trach -- The mister that puts moist air in front of it to keep the secretions loose (and froze me in the process; I am particularly chilly following this surgery -- Last one was in Summer and more tolerable) -- And the suction machine (portable if need be) plus the supplies for each and for cleaning the trach including the saline 'fish' -- Trach users know what that is; they have respiratory techs creeping around the hospital at night to squirt you with fish to get you to cough up the gunk -- The suction machine is very useful but one has to take care not to damage the new flap -- Wish I'd had one post-radiation for all that thick gunk!

BTW, when you can wear stuf around your neck (prohibited at first in hospital with all the throat-cutting), be sure to get the trach straps with the Velcro fasteners rather than the ones with the cotton ties.

Dr Haakenslash, the department chair at UW Med Center who did my flaps along with the Cutthroats, is ENT and Oral Surgeon.

Dr Gillison is no longer with Johns Hopkins. I can't remember where Brian said she was moving to but she is continuing to do HPV research.

She's moved to Ohio State.

I like the Tin Man Syndrome, although in our cases, the replacement parts are just being recycled from other areas of our bodies. I am looking forward to the day when they can grow new body parts from the old ones, so I can have a tongue that moves and has lots of nice working taste buds.

BTW, with my first flap surgery, all my clothes worn to the hospital still fit to wear home, however, the fluid buildup in my leg and feet and waist, etc., from the second surgery meant that my jeans were suddenly too small -- Something to consider depending on where the harvest area will be.