So after a 3 plus hour drive to the med center, another hour wait, finally get to the doc. Since UCLA is a teaching hospital, got examined by the resident, then the head head doc who will be doing the surgery. While they're encouraging in that the cancer is local to the tongue, not so much on how much surgery, recuperation etc.

Will definitely be on a G tube, and trach tube, he thinks both will likely be permanent. Wants me to have a splint made in case he has to split the jaw. I can't say he was the greatest at explaining exactly what was going on, sort if was pushing it off to the reconstructive surgeon, who I see next Tuesday.

Not sure if this guy was painting a worst case scenario as far as surgery and recovery or what. I'll ask next Tuesday exactly what this guy plans on doing. The pre-op testing instructions he sent to my GP mention near total glossectomy, G Tube, Trach Tube, neck dissections right and left, free flap reconstruction, and something about direct laryngoscopy. Think the neck dissections might be to retrieve nerves for the free flap reconstruction, there were no nodes involved according to the PET/CT.

About a 10 hour procedure according to the scheduling person, figuring 10 days to 2 weeks in the hospital.

My wife and myself are pretty down about this, not exactly expecting the "permanent" nature of the G tube and Trach, or weren't prepared for it. At this point I'm not worried about diet restrictions, guess I have about a week to eat my "last meals" as it were. Steak, Pizza, White Castle Cheeseburgers. I can thing of a bunch of stuff.....

This crap sucks.

And so the journey begins...

It does suck and I hate seeing you go through this. Eat up.

Sorry to hear the news. It must be very hard to absorb but it is good that there are options available. Good luck.

Fingers crossed and prayers said your surgery goes well and their worse case scenarios prove wrong. Hugs

Best wishes. Hope things go better than expected.

Ok, back home from the surgery, which was on Dec 15th. Long 11 hour surgery at Ronald Reagan UCLA Medical Center. Wife said the reconstructive surgeon looked like he went through the wringer when he spoke with her after the surgery.

Docs said they removed all the cancer, was able to save back of tongue and part of the left side of tongue, find enough veins and arteries on the right side of my neck where I had previous radiation. Took a big chunk of hide out of my leg, scar runs from my hip bone to my knee. Gonna look sweet in cycling shorts in a few months.
Did the free flap reconstruction, seems to be going will, except I"m not exactly sure how this will work out since it seems my tongue is attached to the floor of my mouth. Speech is difficult at best. Usual assortment of drain tubes, G tube and trachea tube. Trache tube was remove total yesterday, as well as all the drain tubes and stitches/staples. Basically liquid canned food, normal meds. and antibiotic at this point.

Main issue now is all that scuzzy secretion stage, how long does that last? And of course no energy, if my 83 year old mom and I had a race, she'd win. Puttering around the apartment last night in between trying to sleep, felt about 85 years old. Nursing staff at the hospital said I didn't look 59, looked much younger, but I think they're trained to say that.

Next stage is just to get better, heal up and see what happens.

Have a question, do patients having gone through what we've been through eventually return to work, or do they just take long term disability and be done with it?

Not all OC patients are able to return to their original positions. For me, my job was very technical and required perfect enunciation which I was not able to do. After my third round of OC, I returned back to work only to be fortunate enough to take a buy out and leave permanently. I have a couple friends who have had 3 or more rounds of OC and they all have their issues (one had a total glossectomy and cant speak) but they continue to do their jobs. Those people somehow have managed to overcome their limitations and have continued to work. I guess what Im saying is its on a very individual case by case basis if an OC patient will be physically able to work after everything they endure.

Best wishes with your continued recovery.

Gosh, it's early days yet. After my first big tongue surgery I couldn't have written a post like that 8 or 9 days after it.

Do you still have the NG tube in for feeding? Great that the trache is out and sounds as if surgery went well. My tongue is partly tethered to the floor of my mouth too but my loud teacher's voice still bellows out. I really don't know how I can still talk so well.I think you can learn to speak from deeper down and use the tongue less ... although of course the tongue is needed for those tricky consonants.

Love what your wife said about the reconstructive surgeon. As a patient I see the surgeons when I'm in intensive care after surgery and through the daze of anaesthesia I hear a sort of "surgeon's high". They've been through hours of intricate work and the patient has come out fine on the other side. It never occurred to me that they might be totally exhausted.

I went back to part time teaching about a year after my partial glossectomy. Not as big a surgery as you've had and talking for a living WAS hard. Right now at 68 and after another cancer I'm retired.

I'm sure you'll feel more like 59 in due course:)

It is early days so concentrate on healing. Since you are into fitness, put your energy on getting out for walks, short rides, etc. It will come back to where it is going to come to back to. You can only assist along the way but every one of us ends up someplace that is not dictated by our wishes but rather the combination of the disease and the treatment and your own body.

Being active and fit helps a lot so be thankful for that and you'll be on the go in no time!

First, Happy Holidays to all.

ChristineB, Yeah, not sure how things will work with my current job, it had gotten pretty stressfull the months before I was-re-diagnosed. I'm a footwear engineer by trade, and our department was very short handed, funding there for more engineers but HR and department manager not exactly making it a priority to hire any help. Was actualy interviewing with another company when I was diangosed, had to cut off the process. Long story worthy of any Dilbert cartoon basically. So I'm not exactly in any rush to get back to that meat grinder any time soon. In all truthfullness what with disability insurance and SSI I'd be doing ok income wise. Job does require a fair amount of talking, verbal communicatin, plus some oveseas travel. Lets just say jury is still out, some departmental changes going on. Too early to tell on many fronts what will transpire. I've also beeen contacted to do some freelance work for another company, In this case there may be too many options.

donfoo, yes, getting out for some walks, left leg a bit sore what with all the materrrrial they took out for the reconstruction, but they've also set up a PT to come out, willl work with her/him on rehab. Hospital sent me home with a walker, don't really need iit, but they insisted. Luckily there's an elevator to my second floor apartment, so no big deal for access.

On the recovery front, still dealing with mucus, a little better each day but still annoying. Still stiff bones and joints. Tounge I think is healing ok, a couple of painful twinges here and there. but generally ok I think.

And so it goes.