Ok...I finished radiation on 12/17, and on Jan. 19 I noticed I had a tender spot under left neck. As mouth began to "thaw" from radiation I found a sore behind left molar - seems jaw/gum shows cancer as well as lymph node involvement.

I go for more tests on Wed/2/16 PET full body scan and CT scan preparing for surgery...will get Fibular flap from leg to jaw possibly on 2/18.

Does anyone have any great ideas, stories, information to share to ease my mind...or things to watch out for? Any and all help would be appreciated.

Thanks,

Michele in IL

Michelle,

I've had the surgery and I'm still here to talk about it
Here is a video of Carol Coogan at the UWMC with my surgeon. http://www.youtube.com/watch?v=zNW6aY0Xims

It's an interesting interview and can show you what to expect. Carol is actually an OCF member and has posted on these forums before, she looks fantastic.

Ease you mind my dear. It is a big surgery but you can make it through it if I did

Eric

Michele, Ive had my lower jaw removed and a free flap made for my cheek and neck. My doc made me a special titanium jawbone but my body rejected it causing the free flap to not take. I was kept in a medically induced coma for 3 weeks due to all the problems I was having. I also had a trach. Make sure you ask for a possey muir valve trach if you are getting one. That way you will be able to talk easily. I had a much worse time than most do with this type of surgery. It is a long procedure, mine was 10 hours. I ended up being hospitalized for 2 months, most people only have to stay 1 or 2 weeks. If you want to read in more detail posts from that time frame, here is a link. Just remember, everybody is different. I had a rough time but most people get thru it much easier. I would say to prepare yourself to be incapacitated for at least a month. This way you will be ready for whatever you will come up against.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=102247#Post102247



PS ... Im having my final reconstructive surgery tomorrow. If you have questions I can help you with please send me a PM. I will answer as soon as I am able to.


Wishing you all the best with everything! We are here to help get you thru this. If I can do it, (just like Eric said) then you can too!!!!

Michele

I also had this surgery in April 2008. I had nearly all my lower jaw (mandible) removed and reconstructed. They took the bone and flap from my hip. It is a tough operation and recovery can take time, but it can be done. I was in surgery for about 14 hours and kept in hospital for 4 weeks.

Wishing you all the best for your surgery and recovery

Karen

Eric, I had seen that video the other day (and actually before when I just had my tongue done)...amazing! Weird to know someone that has that Dr. and that the patient has posted here! LOL Good luck tomorrow Christine. I will be looking for your posts while I am recovering. I am taking a computer with me. :o)Dr. has said 10-14 days since they are working on radiated skin. I hope I feel halfway decent after a week or so...so I can watch TV, play gameboy and take a vacation. LOL

Thanks, too, Karen...I know I have seen lots of tongue and back of tongue but not so many jaw so it is good to know I'm not the only one.

Right now the swelling is killing my neck - pulling on the old scar from the neck dissection. I did order a wedge pillow this time. Last time I made do with a pile of pillows but I figure with a face full of stitches I will need to be upright longer than last time.

Anything else I might need to have? I don't know if I will need a skin graft on the leg or not...I assume they take that from the other leg like they were going to for the arm flap. Nothing like BOTH legs hurting along with my neck and mouth. ARG!

Thanks for the talk-through...keep it up! I will continue to post here as I learn of dates, and procedures.

Thanks everyone!

Michele in IL

Michelle,

they take all of the tissue from around where they remove the fibula...at least they did with the mine and the others I've seen. I've had to have a follow up graft since then on the inside of my mouth, they used tissue from my hip/groin area on that one, no biggie.

The leg does smart afterwards though and I still walk with a bit of a limp but it's mostly due to how much tissue they had to use for my flap and grafts because of how large my primary was.

Dr. Futran is actually one of the top head/neck surgeons in the country, he's the head of the Univ. of Wa Medical Center's otolaryngology program which is rated #13th in the country by US New & World Report so I wasn't shocked to see the video.

Good luck my dear, I'm sure you'll do just fine though

Eric

The PET scan was clear except for the jaw and neck and the Ct scan showed legs were ok for bone donation. He did say something about me being made wrong or something but we never got back to it. LOL

I am set to go for Tuesday. So far I take pain meds, sleep, wake up, drink Ensure, take pain meds, sleep, wake up take pain meds, drink Ensure, sleep. I HOPE I can stay awake sometime in there before too long.

He said I would probably go home with trach and nasal feeding tube but if I am close to getting them out I am hoping he will keep me another day or two to remove them. I don't want to have to do those myself if I am doing ok. Seems silly to drive home, turn around 2 days later and come back to get them out anyway. Got everything described...hopefully won't need jaw wired but still can't eat/drink until stitches are healed for 2 weeks so I don't get apple juice in my neck. LOL

Ok, dozing at keyboard, must go back to bed.

Michele in IL

Michele, best of luck with your surgery on Tuesday! Please have someone post updates either here on on your facebook. Let us know that you have come out of the surgery alright. We all worry about each other and always watch for updates about others when they are having surgery. So please dont forget to get someone to give updates.

If you dont have one, pickup a dry erase board. You may find its easier to write than to talk for a while.

Im not familiar with how a nasal tube works. Davidcpa had one, maybe he can give you some pointers on how that is used.

May you get thru this phase of your life quickly and move on. Best of luck with everything!

I have a white board from the tongue surgery earlier...this time I taped STRING to the pens and eraser! ;o)

I will post on facebook...if I don't get here you or anyone else with facebook with me is welcome to post updates...PLEASE! I have the forum bookmarked but don't know if the family will remember to post here or not.

The nasal tube is just having food pumped through it in my nose...not bad but I don't want to go home with it!

I don't know what I did before the last surgery. I am DRINKING everything instead of eating...I was really upset at starving I am sure.

I will check in again before I go, if not before then.

Thanks everyone...

Michele in IL

Michele, do you have children that use facebook? Or a close friend who wouldnt mind writing something about your status on your facebook? I recently had surgery and unfortunately my hospital doesnt have internet access so I asked my daughter to write on my wall. She was happy to do it, I think it made her feel important helping me.

Ive had this surgery and I was kept in a medically induced coma for 3 weeks. This was just me, I havent heard of anyone else doing that. Anyway, I know you wont feel like posting anything at all. Thats why Im asking for you to give someone a job and have them write us that you are ok.

I wish you the very best with your upcoming surgery. It is not easy but you will get thru this and be ok. I will keep you in my prayers. (((HUGS)))

My son will post until I feel up to it. I will have a netbook at the hospital and hopefully I will feel like it soon. I have a weird way of when I can't sleep I mess in front of the computer. Maybe doing nothing than re-reading stuff but I should feel like saying Hi eventually! I did last time with the tongue...but this is much more involved.

That is why I am up now...took medicine and hurt too badly to sleep but can't hardly stay awake. The infected lymph node is very swollen and has made by neck, chin, back of head and ear swell. Feels like I slept on the whole side of my head wrong and I can't even sleep on that side!

I will just trade one pain for another...and hopefully the newer pain will get better instead of worse, like this pain is. :o(

Wish is was today as originally planned. I am ready!

Michele in IL

Michele - Just wanted you to know I'm sending hugs and thinking about you! Sure hope pain eases up soon so you can be more comfortable. Re the sleepless time -I do the same thing -get in front of the computer and check on how others are doing! Glad to see you have some special people keeping up with you and sending great info and suggestions. Gonna check FB, too for updates from you or your son.

Michelle - best of luck - my thoughts are with you - hope your hospital time is short - sorry you are in pain - hopefully the surgery will take care of it re the sleep difficulties : I was the same way post op - I wasn't in any real pain but the morphine they were giving me made me a twilight zombie- it was one of those situations where I was exhausted but couldn't sleep though not because of pain but because of the trache and my fear of it getting clogged - since no one there was watching me or coming when I called. Hope you fly through the surgery and go home without the trache and NG tube ! Good luck!

Michelle,
A few practical pointers. HAve some one pick up a soft pillow filled with the stuff they use in Beanie babies. I have gotten Cushie pillows at Walgreen's. Do you have Crocs?? I found that they help equalize the differece in height when you have a boot on after surgery. Be sure to have youer doctor order pt for home. The therapist came out a few times and the exexcises helped. You will slowly be able to graduate from liquids to soft to normal foods. A varied menu will certainly help.
THe surgery and immediate post surgical recovery will be rough but the results are worth it. Please pm me if you have any quedtions

Thanks for the tips. Yes, I have my purple crocs packed! I don't go anywhere without crocs...and didn't think about them evening out the height!

I do know where I can get a small pillow with the beanie stuff in it...for the leg to lay on? How big should it be? We saw some little ones and some neck size/shape...$1 I believe!

I will check with PT coming to the home. Didn't need it before but probably will this time.

I have quite a choice of stuff I can eat going from liquid to soft to regular. LOL I am drinking Ensure totally for now, don't think I had it until I was on radiation AFTER the first surgery so that is a big help. :o) I can do yogurt, pudding, baked fish, all sorts of stuff that I had to go to after the tongue surgery the first time out. Nice to know I will graduate to soft and normal!

Since I have had radiation in the area of stitches the Dr. said he would keep me 10-14 days and I am HOPING he would keep me until the feeding tube (nose) is gone as well as the trach tube. If I have to keep them a long time I will be ok learning to care for them but don't really want to get all the equipment and learn it all to have them for 2 days at home. He agreed...but just depends on how I do. I was eating before the severe swelling from the jaw and lymph node so I think I will be able to go back to drinking/soft foods fairly quickly. I am hoping the same with the trach, once they are sure they don't need to go back in for more surgery they will close it up so I can talk and get it removed before I go home.

I hope to not remember much of the first few days! I really hated the neck dissection the first time - felt like my head was going to fall off when I moved - as the stitches pulled. I am hoping this won't be much worse than that around the neck. I am prepared for the leg to hurt more than anything else...as previous posters had noted. The leg should be straight forward... stay off it until safe, then work into it. I HOPE!

Thanks for the ideas...any others are very appreciated. I will have a netbook computer, books, Nintendo DS and lots of things to keep my busy while I am stuck in bed. They wanted me up more last time but I am hoping I can stay awake better this time, since it is a longer stay. I was home at 5 days last time.

Michele in IL

Michele,

You are my hero, we went through our battle at almost exactly the same time and I feel very close to you. You are strong and I know you can kick this shits ass! I will be thinking of you all week til we hear back. I hope this does the trick and you can move on with your life. I must say though on my side, its almost a bit scary coming out of the tunnel. I dont know what to do now...

Your Friend,
Nathan

You sound like you might still be depressed...I am looking forward to going back to doing the things I love to do. I made some really good sales on ebay in the last week or two, want to finish those things up, get back to eating again and living life. I know this has all thrown my son into a tailspin and he is hopefully getting new/different meds because what he had wasn't working. I will be kicking as much as an old lady with one good leg can kick! :o)

Michele in IL

Michele - It's so good to hear how well you are taking care of you, and keeping so busy with everything you do - what a great attitude you have! I'm sure it is so encouraging to others here, too. I check on you and Nate very closely and hope for the very best for both of you.
Nate - You are right, it certainly is scary coming out of that dark tunnel - any change in one's routine brings stress with it even if it's a good change. Both my son and I had that "what now" feeling, for a short time. But you will see, little by little, as you get on with new activities, and interests, it gets better and better! You have come so far already and are even helping others, too! Way to go, Nate!!

Michele, Im thinking of you today. Hopefully you are not too anxious about tomorrows surgery. Soon it will be over and you will be cancer free. Then look out ebay!!!

No, not anxious about it, just ready to have it done. I was ready to have it done last Friday and then it was put off a few days. Bags have been packed and ready to go. :o) Can't come quick enough...so I can be recovering instead of suffering. Just realized they and/or I hadn't called insurance about inpatient...so did that this morning. Whew!

Michele in IL

All the very best with tomorrows surgery Michele.
Will be thinking of you like many others here and looking for your first post here or on FB.
Gabriele

Thanks everyone. I am up early, going to take my last dose of hydroco before leaving for the hospital. Hopefully I won't notice as I go off that stuff~ I will be under the influence of OTHER stuff. LOL Taking way more than I should have had to because of the pain in my face and ear. I am here, in my BIL's apartment with hubby, son and 2 brother in laws...the snoring that is going on...is fairly quiet. LOL


Not scared really just worried about how things will heal and what might go wrong. Mostly just want to be done. ;o)

Michele in IL

Michele, we are with you and willing everything to go as planned for the very best outcome. Let us know when you can (or have your son let us know) how you are doing. Keep that Netbook close by and we will be close by, too! Big hugs going your way!

Well, surgery didn't go as planned. The tumor was larger and further spread than they had thought. They removed some of the jaw in the space behind my teeth and 2 teeth I think. They then sewed my tongue and some breast material they brought up and through my neck inside and hooked some of my tongue to that. THEN they wired the mouth shut. :o( They also took some of the nodes out of the right side as well. So I have stitches/staples all around my neck again and can't eat/drink. I am so thirsty!

They are talking the 3 solution chemo to help slow/stop the tumor while the surrounding area heals from surgery and radiation. After I can get to a 3 month PET scan they will know what is good and bad tissue and try to use the radiation knife I guess.After a 1 1/2 hour awake trake they may never get me close to an operating room again.

Mouth should be wired for 2-3 weeks so will have to relearn to chew, etc. after it is open and healed. Coughing from trakes and wired mouths do NOT go together! I will keep updated as I find out more. Running a slight temp, having a little trouble with the tube feeding so kind of slow out of the gate.

Thanks everyone for the thoughts, prayers and concerns.

Michele in IL

My heart goes out to you!!! (((HUGS))) Ive so sorry that this is happening to you. I hope you are being kept pain free thru all this. Thank you so much for posting, Ive been very worried. I made a post showing what your son posted. He reminds me of my son, same age too. He did good! Be well, Michele. I will keep you in my prayers!

Oh my goodness, Michele! - Sounds like they did bunches of stuff to you! I've been SO thinking about you and really appreciate your getting back to us. You son did great with letting us know on FB and Christine kept us updated too on OCF. Lots of prayers and hugs going your way.

Michele: I'm a brand new member, but wanted to wish you the best. Hopefully they are giving you good pain meds. I had the most trouble with that. My surgery was on 1/3/11 and I still feel like I was run over by a MACK truck. Hope every day gives you some improvement and healing.
I noticed you are in IL also.... whereabouts ? I am in suburban Chicago.

Ingrid K.

I am between Peoria and the Quad Cities but getting medical treatment and the cancer center at Iowa City, Iowa.

I have one drain left, should get staples and stitches out at 14 days, and probably go home on tube feedings and maybe a trach. Maybe the the end of next week. Much longer than the last 4 day stay. :o(

Not much pain but the neck dissections are numb, mouth is numb, muscles under breast area where they moved muscle is tender.

Michele in IL

Michele, I hope the docs are keeping your pain levels under control. Dont be in pain, it will not help you to heal at all. I remember how sore I was, it was not a fun time.

If you go home with the tube and the trach, make sure if they dont ask you that you speak up and ask for a visiting nurse. You need to be taken care of. The nurse will come out and do your vitals, change bandages and make sure you stay infection free. They can even help you with the tube feedings to make sure you are doing ok with it.

Make sure when you go home that the doc gives you liquid meds. Ask him! Its a good idea to ask the doc a day or 2 in advance of your release so your hubby can fill the prescriptions before you go home. Not all pharmacies carry things in liquid, sometimes I end up going to a different pharmacy because I must have things in liquid.

(((HUGS))) and prayer to you!!!!

Michelle,
So sorry that you have to go through all of this. This disease is so unfair and throws so many curve balls! Hope that you mend quickly and that you can then get rid of the rest of the cancer without further surgical intervention.

Best Wishes
Sue G

Not much new to post...I am improving slowly. Got the last trach so it is easier to breath and they will cork it in the next day or two so they can tell when I might be ready for removal. One drain left under arm pit where they took tissue and moved it under, around and through the muscle to the mouth.

I can't get to some of the pages I planned on getting to so haven't had as much to read as I wanted to. I thought I could get on my local ISP and read mail...but you have to have that one address as the master...and it isn't. Darn it!

I got better sleep last night, just hate that I still can't get up to the bathroom without asking for help to unplug cords, etc. That will make a big difference.

Michele in IL

Wish I could be there, Michele to visit and see what I could do to help. I would even go to the bathroom for you if I could! Not quite sure I understand about having a "master address" to read mail but seems like there should be some way to get around that. You are improving and it's good that you are getting better sleep. I lived in Chicago for about 20 years before coming to TN. Started out on Near North Side, then Skokie, then on far West side in Hanover Park. It's so good to hear from you, Michele. Hope improvements continue to come and help you to feel better and better each day!

Michelle,
Ask for a commode to be put along side of your bed. That way you can do your duty without having to wait for someone to help you and you don't need to get all unplugged. Hope you continue to improve and keep your spirits up.

Take care,
Eileen

Great suggestion, Eileen! (Why didn't I think of that?!) I remember when one of my friends was in the hospital with something not as serious as being plugged into stuff. - she had one along side her bed even tho' it was only a few steps to the bathroom.

Thanks for the ideas everyone...I got unplugged and can make it there now...just need for someone to remember to empty and log the amount!

I got the last drain out this morning but they found I have pneumonia so I am on heavy duty medicines to beat that quickly. They were thinking home Wed - now might be Thurs or Fri. Will still have ng tube for feeding, trach - until we know we don't need any more as it was a major pain the ass to get and I don't want to do that again. I am just asking for some pain meds when I have gone since about 8 a.m. without any - it is supper time, so that isn't too bad. Most everything is just numb but the new sewing in the mouth hurts.

Stitches and staples will come out at the 14 day mark, and may jaw wiring as well. Just have to see.

Michele in IL

They are thinking maybe Thursday home but fever is still a little high. Have to see how the rest of today goes. Glad they didn't do it and then have it fail but not so sure I wanted this done this way either. They are stuck on the fact that I need radiation to make that chemo work...and I have already been radiated. They put new tissue in there...so I guess than can destroy it now.

Michele, just wanted to let you know that I am thinking of you and praying for you.

Me too - good thoughts and many blessings - it sounds like a long haul - but it also sounds like every day is offering a small triumph - drain out - bathroom by self - etc... It doesn't seem like much but it is - it helped me that each day something improved - sorry you are in pain - but that should improve slowly - take care- you are in my thoughts!