Since I promised some folks I would update: John's surgery was 7 hrs., the Docs said he did very well considering the previous surgery and radiation. More lymph nodes removed, more tongue removed, some jaw bone removed- titanium implant and free flap graft from right arm and tummy. New Peg, trach, and a couple of other "invasive tubes" I didn't quite understand but had to sign a permission slip for after he arrived in recovery. Apparently the next 24 hrs. will be critical as to whether the flap takes.? We've been up since 4:30 am- so night-night- guys. Amy

Hang in there Any,

Lets hope the 2nd time around is the one that will end this diaease. all my best.

Danny Boy

Thank you for the update Amy. You and John were in my thoughts all day yesterday and I'll also be holding you in my thoughts today. Seven hours actually doesn't sound bad for such extensive surgery. I second Danny's wish that this time they got every last bit of the cancer!

Nelie

Myself, my family and my church family have you in our prayers, Amy, and you as well Danny.
Darrell

Thanks so much for updating us, Amy. I know today and tomorrow will probably be tough and my heart is with you and John. When we were watching and hoping for my flap to take, they told us they wanted to see pink. So we had a motto that may apply to you: Think Pink!

Hang in there and get your rest.

Ruth

Amy... thanks for thinking of us ...I know you are exhausted...try and get some rest.

Marica

Today went pretty well. John's blood pressure keeps going down lower than they like, so they are medicating for that. They gave him a little "sedation vacation" to wake him up enough to ask if he was feeling any pain- he nodded no, so back under he went. His primary surgeon noted in the chart that the flap looked "awesome", and the nurses were laughing about that being a new medical term. The plastic surgeon came by tonite and told them to remove the probe that was checking the temp in his mouth because everything looked pretty good. He'll still be in SICU until Mon and then I can be there with him. Thanks for your support, guys. Amy

Amy
Am so pleased to hear that so far everything is going according to plan.
Am thinking of you both
Sunshine.. love and hugs
Helen

Very good news so far! Lots of people are rooting for you....Nelie

Good to hear Amy, If he says he feels someone holding his hand, It's me and several other internet friends! (by the way you might feel it too)

Amy,

I love the expression, sedation vacation! I don't remember them waking me up but they did a couple times so my family could see me awake. It was difficult having the vent and having to write questions. I do remember writing "Imitrex 100 mg" because I was having a migraine, and them trying to figure out the sub q version then putting me back under. It was weird to wake up with my hands tied to the bed rails and being told they would untie me if I didn't touch the tube in my throat. It's amazing that 3 years later I remember it like yesterday. I am thinking pink for you and John!

Sincerely,
Lisa

Amy,
So glad things are going well so far. I like Mark's thought of 'internet hands' reaching out to the both of you. Add me to the chain. Must be rough not being able to be with him. Do they at least let you visit for a few minutes?

Take care,
Eileen

Hi Amy,
I'm happy it's going well so far. You will feel better when John is alert and communicating with you. Be sure to have paper and pen ready. My family didn't use a dry erase board because they didn't want me to have to write some things over again (for example, if I had pain I could reference where I already wrote that) and they also wanted the notes to go back on and to show to the docs if needed. My oldest daughter still carries one of the notes in her purse as does my mom. I laugh at the one where I wrote "Please don't leave me alone, the nurses might kill me"! I did not get the greatest of nursing care the first few days, lol.
Take care and be sure to listen carefully to anything John tries to tell you when he first wakes up. I desperately tried to relay to everyone how much my leg hurt but it took a few days for them to realize it wasn't the normal pain I was feeling, that there really was a problem. If he consistently tells you that one certain area hurts, make sure the docs check it out thoroughly.
Love,
Minnie

Well Minnie, you brought back some memories for me. My sisters made sure the clipboard and pen and paper were ready, too. (Charades didn't work too well!) They kept a notebook full of pages and pages of my notes--just when they thought they could have some peace from my talking! Of course when we look at them now we can estimate what stage of pain meds I was in by the legibility.

We also used a dry-erase board to track the nurses' and aides' names each shift and also to track the pain med. times. We could let our nurse know in advance if I'd need it so I wouldn't have to wait long after it was due. The nurses and aides appreciated being called by name--it helped us develop positive relationships that I believe improved my level of care--and I liked knowing how to gauge my progress and expectations so we could ask for medication adjustments if we saw a pattern of pain intolerance.

Amy, all this reminds me of memories we made in the worst of times that made us laugh through them. We may have developed a "sick" sense of humor, but laughter is great medicine and I'm hoping you and John will be able to find (look for) things to laugh at in spite of the pain and trauma so maybe you'll both have a boost in the healing process.

Add my hands to the circle around you and John. If I could give you both hugs, I would. I'm convinced that love heals too and I'm sending that along as well.

Love and hugs,
Ruth

Hi Ruth,
I often wonder if it is called "sick" sense of humor BECAUSE that type of humor seems to sustain some of us when we are sick, lol. My girls and I started cracking jokes a few days after diagnosis, although we had to do it away from my husband as he took the news pretty hard. It was in the hospital that he finally started to appreciate the relief humor can bring. I asked for a mirror about a hundred times before he would allow anyone to bring me one. I looked and then told him I looked just like Jay Leno with that chin and he laughed and laughed. It was a regular comedy show the day he helped me take my first shower after surgery and we both fell in. Then there was the night in the hospital that I had a bad reaction to the Ambien they gave me and I kept him up all night because I thought there was grass growing on my legs. Humor can make anything scary seem smaller.

Let me stop before I totally hijack Amy's thread. Amy, I can tell that you have a great sense of humor............use it while you are there!
Minnie

Amy
Keep on truckin and keep us posted. I'd say probably at least three hurdles passed and ya'll going for the gold. You are in my thoughts....
Peace Denise

Monday, Feb 13, John moved to a room today, sat in a chair for 3 hrs., got rid of a few tubes and is only taking pain meds to sleep. Onward and upward. I'm thinking about your guys. Amy

All good news still. Always good news when you can get rid of some tubes. Still thinking of you both every day....

Nelie

While I am laughing at some of the above posts, I will let youall know that we are home today. It was truly a case of the "blind leading the blind" I drove us home -3 hrs.[and I can't see worth s&*^} while John vented "backseat driving directions" becauce he can't talk -arms swinging wildly, etc.] but the funniest part of today was the new "checkout procedure" John instigated at Baptist Hospital this morning. He was up at 4 am. At 6:30 he cut his patient id bracelet off. At 7:30, he took the heart monitor off-and the folks at the nurse's station came rushing to our room to see if he was dead- at 8 am he tried to take his iv out[which was in a main artery and I stopped him before he accomplished that] he sat still for the removal of the trach tube and final dressing of the incisions, then while I was at the nurse's station waiting to sign release papers and get a wheelchair, he walked past us, pulling his suitcase and pushed the down button on the elevator. He was Out Of There. So, all you caregivers, please hang in with me- there is gonna be a long row to hoe here for the next little while. And thanks to everyone here who has kept us propped up to this point. I'm thinking there will be some serious stuff I will need to ask about soon. Amy

Amy, I'm so glad you are home and what a fighter John is! I can relate, though, to wanting to get out of the hospital that badly (I felt that way after being there for 9 days after radiation with a mysterious fever that wouldn't go away). He must be so glad THAT part's over! Hang in there....Nelie

Amy, I'm THRILLED that he's home so soon!! That's a great sign, he seems to have handled the surgery well.
Good for him getting himself out of there on his own time and terms.
Take care,
Minnie

Amy,
I can SO relate to how John felt. I was discharged on a Saturday, and EVERYTHING takes longer on the weekends. By the time we got to the car I was calling everyone on my cell phone list and shouting "I'm going home" which was very garbled around the large dressing in my my mouth holding my graft in place. My husband was driving and kept slapping at me trying to get the phone out of my hands. He was freaked that I would talk too much and lose the STITCHED IN dressing I was garbling around.

Time to get on with the healing in his own bed!

Sincerely,
Lisa

I'm laughing out loud at John's discharge methods! I was impatient too after three weeks in the hospital and I went home on Thanksgiving Day with 15 family members at home waiting for my arrival. We nearly needed a moving truck to get my stuff home. While we were waiting for the moving carts, we dressed my husband up in a hospital gown, put him in the bed and propped an emesis basin under his chin, the clot protectors around his legs, footies over his shoes and then took a picture of me and my sister suctioning his mouth and brushing his hair. Actually the nurse took the picture. I'm not sure that floor will ever be the same! (He'd probably be very, um, "ticked" at me for telling you this!)

I'm so glad you're home! I'm hoping John's recovery will triple its speed now that you're in your own comfort zone.

Love and hugs,
Ruth

NEXT QUESTION: What are[if any]are the questions we should start asking about chemo? My guess is we have about 4 to 6 weeks to get prepared for that step. At last,I have some advance time to read and try to be more knowledgable going in. Do we have a choice of drugs? Can we ask for nausea control up front? What should I have in the medicine cabinet at home for John? [remember he has already had radiation, so this is chemo only] Help us get ready please. Amy

Well, we saw 2 Docs yesterday. John got all the staples and stitches out from neck,arm,stomach.Trach hole is healing, but John forgets to cover it when he talks or coughs, so it isn't closing as fast as it could.Area on his arm where the free flap was taken looks awful to me, but the surgeon says it's supposed to look like that.-O.K.- He is still down 800 to 1000 cal. a day from what he's supposed to be getting. Any caregiver help would be appreciated. He just doesn't want to force himself to eat[through the peg] He's been told to try swallowing a few sips of any kind of liquid he can tolerate. I don't know that I would have the fortitude to go through what he is dealing with. I admire him so much for fighting through this. And I continue to be in awe of all of the people on this forum. Amy