We are almost "currently in treatment"- well I'm not sure we were out of the last treatment yet- but John's new surgery is scheduled for Feb. 9-7:30 am. Told to expect 8 hrs.in the OR. Had a good talk with both surgeons today. Here's what I heard them say. DR.S [whom we been seeing all along} thinks this 2nd surgery has a good chance-along with chemo- of getting rid of the cancer. He never used the word "palliative" treatment. They have decided to use a titanium plate to replace portion of jaw removed and skin and vessels from right arm to cover that, and remove more lymph nodes for testing. They are going to keep him in SIC in a "sleeping state" for 48 hrs.to be sure he doesn't move around. Dr.S
told me to go somewhere and rest
during that period because I would be of no use in the hospital. Also, Dr.S will not move him to a floor on a weekend, so we won't be in a room until Monday 13th. We were told to plan a stay of 14 days in hospital, then up to 4 weeks recovery at home before starting chemo. Dr. S and Dr. M[the reconstructive surgeon] both told John that this would be pretty tough as the last surgery was less that 10 mo. ago, so there has already been trauma plus the radiation trauma to his mouth and neck. I didn't ask today what the chemo drugs would be, but I will because I want to post them here and get any advice on how to deal with this at home. I gave Dr.S a print-out of Brian's post on "accepted protocols" for the combination of surgery, rad. and chemo combined and an interesting discussion insued. He offered to try to get us to a consult at MD Anderson, but said that he doubted we would hear anything different proposed and time was pretty important at this juncture. So, here we are. Thank you all for your prayers and good wishes. Amy

Amy,

I know this has been such a long haul for you and John -- I hope and pray that this time his doctors can really nail this once and for all. Please try to take care of yourself too, and get some rest whenever you can.

Cathy

Hello Amy,

May you have the strength to get through this rough part of this "Bastard of a Diaease"
Please know that I and many members will be pulling for him and hopefully this nightmare will end. It's going to be a rough road ahead, please keep posting so we can offer support and love. Please remember to vent here anytime. We want to help in any way we can.

Love Ya, Danny Boy

Amy: You, your family and especially John will continue to be in our thoughts and prayers.
Darrell

Amy, You are both in my thoughts. Feb. 9th is the one year anniversary of my neck dissection and partial glossectomy and on that day I will be sending all my thoughts and prayers your way. It sounds hopeful that even though this sounds like a really tough surgery they may be able to really stop this disease for good! As Cathy said, don't forget to take care of yourself through all this. You have too many folks who need you to let yourself get run down.

Please let us know when you get a chance how things went. There are lots of people here rooting for you and John.

Nelie

Amy
Well done, you have asked all the questions, and have become John advocate for his treatment. There is nothing more you can do at this moment, so try to make sometime for you, get your batteries fully charged for the fight ahead.
May your God walk with you
Sunshine... love and hugs
Helen

Amy,
Is John left handed? If not, I'm suprised they will use skin and arteries from right arm. While I got lucky and didn't need to have them removed, they wanted to make certain they took them from the opposite side.

You both will be in my thoughts and it sounds like they will kill 'this beast' this time.

Take care,
Eileen

Amy - that is one tough treatment to come, especially given all John and you have been through to-date.

Glad the doctor encouraged you to rest while John is in early recovery. You probably will have lots to do once he's at home for the 4 weeks and the chemo to follow.

It takes so much love and strength to get through all this. Lots and lots of good, strong positive energy sent over the airwaves to you and John and your family.

Love
Mary

Amy & John,

I will be thinking of you both and sending many prayers and hugs your way on the 9th. My mom had to endure 2 major surgeries pretty close together and it was tough but he can do it....

Hugs,
Dani

Hi Amy,
Did they say why the are not using the bone from his leg? I have read alot on this procedure and it provides the best overall outcome as far as function, etc. Just wondering.
Sounds like you have all else covered, great job. I was kept in a sleep state as they will keep John and recall being VERY disoriented for at long time when I finally was allowed to come awake. My head was not kept in the proper position by the nurses on the day I "woke up" and my face became so swollen I was unrecognizable. My older girls still struggle to talk about it. I recall my first few moments of coming awake and trying so hard to see. I couldn't because my eyes were swollen shut and I thought I was blind. I was only awake for maybe 2-3 minutes and when I came awake again my swelling had reduced and my sight was ok. Just something else I remembered.
Minnie

In the interest of time[my bedtime] I am going to answer some specific questions. Minnie, the reconstructive surgeon told us that using the bone from the hip[in his experience] causes a lot of problems, is hard to shape and fit and he was having more success with titanium. This guy was voted[by whom I don't know]one of the Best Doctors in America according to a plaque in his waiting room. They wanted to use a graft from the left arm, but John's circulation was so bad in that arm they have elected not to . I am taking your post with me to the hospital so that I can question the position they keep John's head in during his "sleep state" Thank you. Damn, this is scary stuff I think I will have access to a computer while we are there and I will be updating and probably asking alot of questions. Thank you all for being here. Amy

Amy my friend...may all the stars be in the proper alignment and the Big Guy be watching over both of you.

Take Care
Marica

Amy
If he is right-handed it it is doubtful that he will be able to use his right hand to write, they gave me a nerve block in my left arm (graft-site) and I couldn't feel a thing for 5 days, maybe a point worth asking about it will be very scary for him if he cannot communicate.
Sunshine... love and hugs
Helen

I'll put that on my list of questions Helen. The Docs won't wake him up until sometime Saturday, so maybe he'll only have 2 days of not being able to write.
I've just spent the last 1 1\2 hrs. reading past posts here after searching "titaniun jaws". Still feel very uneducated about them, which means I can't talk to the reconstructive surgeon very intelligently. So anyone out there who can give me questions to ask? Amy

Amy,
I still wonder why they don't use the bone from the leg. It's the "treatment of choice" when jawbone is removed. Ask them about it, see what they say.
Minnie

I wonder if the difference has to do with the fact that John's jaw has already been radiated? That might make that kind of bone transplant much harder than when it occurs before raidation.

Nelie

Amy
Is John on any medication? Just a thought to ensure that the team is on board with everything while he is sedated...
Sunshine... love and hugs
Helen

Helen and Minnie, The Docs have told him to take his bloodpressure and thyroid meds. on the moring of surgery. They have boosted the Prednisone some to help with the joint problems that he has had for some time. I spent several hrs. tody trying to find Titaniun replacements for jaw bone, but did not get very far. Guess I'm still looking in the wrong places. In fact I'm gonna post to that issue in General topics. Amy

good luck amy and john , my prayers and thoughts will be with you onthe 9th , keep your chin up john everything will turn out fine with the help of god ..take care of yourself amy for johnssake there is a long road ahead god bless ...maz