Folks I haven't posted often, read alot...learned alot...shared anything useful. Wanted to update you on Don. We just got back from UW. He came through IMRT Rad/Chemo with "flying colors" "poster child" they said. Finished Jan 23, Long dark February. All CTS have looked good. Getting back to mimself except no taste, ear aches and hair missing at rad points. Went in yesterday to do right side nodes. 45 minutes late the DR came out... biopsy showed there was still cancer on the tongue and tonsil though smaller. Monday radical. Flap from forearm for tongue. 8 hour plus surgery. Stickier because they did the rads first. This was our second opinion. (Out of 3)This is the procedure he would have had last November. Now there's no more IMRT if this doen't get it. Prognosis dropped to 20% (Not that we REALLY look at that ) but to understand what we're up against. How really dedicated we need to be to fight. Where do we go if this doesn't get it? Calling ALL you ANGELS!

hi Jeepster,

i just read your post again and am wondering how Don is doing?

fine caretakers like you are angles in my eyes.

best wishes,
cu,
larryb

Hi, Jeepster, was wondering how Don was doing. I`m so sorry to hear your news. Keep reminding yourself that Don could be in that 20 percent.There`s no doubt about it, it`s a fight, you will find the strength, somehow you just do what you gotta do!I know how you`re feeling, if we could just heal them ourselves. I know helpless it feels to be a caregiver and not be able to change much. It`s hard but you have to try to be optomistic for Don and yourself, I know you`re thinking easier said than done. I believe we have healing power all around us, we can call them angels, or dogs, or rocks........the name doesn`t matter.........the universe is full of loving energy..........Prayers and incense flying your way...........Hugs, Dee

Hi Jeepster,

I'm sorry I didn't see your post earlier. My trips to the forum have been sporadic lately. Anyway, I was also wondering how Don is doing after his surgery? As to the "what next" part of your question, I would suggest you ask what other chemo regimens Don could try and also check to see if there are any clinical trials available that he could particiapate in.

Rainbows & hugs,
Rosie

Hi, Jeepster, I`m going to agree with Rosie on this, chemo, clinical trials. If Frank decided it was time to leave when he did, clinical trials was our next step and our docs at Dana Farber were in agreement. I know how hard things are for you right now, all too well.......hang onto the hope and keep on fighting.......Love and Hugs, Dee

Hey all you angels! Thank you sooo much for all your support. Don is doing WONDERFULLY! We just got home Wednesday evening. He has a trach, 54 staples in his right arm (about a six inch diameter forarm graph) another 6 inches up to the inside of his elbow from taking an artery, 30 staples on the side of his belly, and at best count about 80 stitches from under his right ear, under his jaw to just below his chin. Also the peg tube. All my fears were calmed by the sheer amazement of his strength and speed that he is recovering. No jaw split, no bones involved, so no leg bone graphs. All of which we didn't know going into surgery. When the path report came back with clear margins(the quick freeze did also)I felt that all our prayers had been answered!!!! But I was wrong God pulled a fast one on me. The day after he came home, he said he laid in that hospital bed with nothing to do but think... he said if he ever swallows again, it wont be beer if the Doctor tells him not to (I can tell him till I'm blue, but you know how that goes)and THEN he said as soon as he can walk 5 blocks down the road, he's walking into that church! Then he'll check out some other churches until he finds one he's comfortable with. AND he MEANT IT! Talk about speechless! WHO was this talking?! All I could do was give him a big hug & kiss. I forgot I prayed about that stuff! He threw the smokes away 3 1/2 years ago and never looked back. He'll do this too. He just had to say it. He really is doing well, some of his friends were a little shook up about his arm and his nephew was taken back by that and the trach. I comforted the nephew as for the drinking buddies...maybe they'll THINK! Or maybe they'll just drift off. We'll be fine cuz Don has decided that he wants to live and I'm going to do everything I can to help him. Yes, Don would be labeled a heavy drinker, although he was always functional...never late for work, same good job for 33 years, never abusive,never drank at home unless we cooked out, but golf, ball games, civic picnics, and our neighborhood tavern. He's a fun-loving teddybear that never hurt anyone. And thought the alcohol wasn't hurting him. He'd never been sick he never even had a cavitiy in his mouth! (what a shock to have 4 teeth pulled!)Help me people, WHY isn't there a cancer warning on alcohol!!! His buddies don't believe it. When they ask "How's Don doing?" I tell them,"If you REALLY care how Don's doing, you'll go do a little research on oral cancer... then you'll KNOW how he's doing. Maybe thats a little cold but it's true and I'm tired of them making me out to be a "spoil sport, nag...whatever" Some friends! I enjoyed going out with him as much as his buddies... I didn't know...They may live to be 90 and never get it.. but Don did... the stuff is poison to him. I have no problem finding other entertainment for us.. We travel, ride horses, (there's soda at the ball games)or just lay low and putz in the yard. Yes, it's culture shock for him but not near the shock we got when that Dr shut the door behind him! Well sorry for rambling a little off subject. I do want to tell you more about his physical condition and maybe get some input about helping him recover. He's more worried about never having a steak than a beer. The Dr. told they'll be doing a swallow study. He hasn't had anything to drink orally for 2 weeks. (He did without Dr. permission take about a teaspoon of water to try and wet his dry "burning" throat. He choked a little but it went down. He said it helped his throat. Then he asked the Dr. and he said NO, not yet. When? The Dr. said it will be a long hard road to swallow again IF HE EVER DOES. I was shocked and told him that Don says he can swallow a little saliva on his left side. And the Dr. said GREAT! But offered no further comments about prognosis. The trach is suppose to come out Thursday, staples too. Besides not drinking, what else can we do to lessen reaccurance rates. I feel the need to pump him full of anti-oxidents, (though I won't if Dr. says no) But they're not taught anything but "pharmasuticals" (oh, where's the spell check in this program Brian? maybe supreme greens, or flur-essence. Never straying from the conventional stuff but getting an extra edge. Any suggestions? I know this is a wide open subject and I'm not going to jump on any bandwagons, just good honest veggies in a bottle. That,and lots of prayers. And I'll keep praying for each of you long after mine have been answered. Through all of this, I became a 1st time Grama on Monday the 19th. Don was still in the hospital in Madison, one week after his surgery. But here in Rapids,via C-section (one more crisis) we have a healthy 7lb,11 oz, long blonde haired, big blue eyed baby girl. My daughter-in law is fine too. I have 4 boys of my own... I am so blessed. This emotional rollercoaster does have it's highs just when I thought I was going to lose it. So I'm happily back to "marginally functional" there's a buzz word. And I'll be able to get back to the board more now that things are settling down into our new "normal". Just one more question for now...How common is it REALLY to have the nurse forget to take the tornaquet off!!! The Dr's were awesome but we have some really issues with one nurse in TLC ( Trama Lifesupport Center) Don was on continual monitoring and has a blood pressure cuff on. The nurse drew blood from his elbow on that arm and put the tornaquet just below his armpit. This was half way threw her shift...the NEXT nurse discovered it 4 hours later! It was partially hidden under the top of the BP cuff and Don didn't understand why his arm was getting so sore there. This happened the third night after surgery, I had just left for the first time that evening. He had an "episode" only a couple hours after I left..she hadn't been irrigating him the whole time and then his secretions all tried to come out at once... then this happened..He couldn't talk..he wrote this to me when I got back on Friday. I only knew about the trach problem. Then Sunday morning as I sat "indian style" on the cot next to him ( He was moved to a regular floor on Thursday)a "flub"otomist came in and drew blood from his hand and just after he left...right before my eyes...it had happened again...oh restrain me! What is going on! We have our comment form to fill out now. And I can't say enough good about the Dr and his residents but some of the staff..........whoa! Don feared my doing anything while he was in the hospital and I understand... if that woman had gotten suspended, she would know why, and she knew where he was, and he couldn't talk, and I might be 2 hours away. All kinds of scary things run through your head in there...but it goes to show you HAVE to take some responsibility for your own medical care. Don't JUST leave it to them. Ask questions, watch them, KNOW whats going on. Sorry about the novel here I'll give you all a break. Sleep well and thank you all again. My prayers go out for all of you that we find a cure for this damn disease and we can all heal in peace.
Karen always "Carin'"

Karen,
Thank you for the update, sounds like his attitude is great! My biggest fear was waking in the ICU with a migraine and communicating it to the staff, of course, I woke up with one. I had discussed it with my docs and anesthesiologist presurgery, and when they woke me up I was still on the vent. I wrote a book about Imitrex, my dosages etc on a clipboard but wrote that my medicine was available IM, when I meant subcutaneous. Put off that injection forever and I was furious. Hard to express fury on a vent!

Congrats on the new baby girl, I am partial to blonde baby girls as I had two of my own.

Keep us posted, we are all pulling and praying for you both!

Sincerely,
Lisa