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#2259 04-12-2004 03:04 AM
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Hey Guy`s just heard from Jeepster, her boyfriend is one hour into surgery, so lets get our prayers flying...............it`s gonna be a hard long day for her.......Hugs to All......Dee

#2260 04-12-2004 03:18 AM
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Prayers and positive thoughts on their way... may the day end well...
Love and Hugs Helen


SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
#2261 04-12-2004 01:38 PM
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Sending some good vibes his way. Dan


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
#2262 04-12-2004 02:08 PM
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He`s into the microsurgery stuff now, heading into 11 hrs, looks like so far so good. Don`t i know the long day she`s having !!!! She has computer access at hospital, so I`ve been hanging onto her..........so we`ll just keep up the prayers guys..........Hugs, Dee

#2263 04-12-2004 02:44 PM
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Thanks for the updates, Dee. I'll be praying extra hard for both of them.


Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
#2264 04-27-2004 03:07 PM
Joined: Dec 2003
Posts: 47
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Hey all you angels! I posted an update in Symptoms and DX (wrong place I guess) But I just TONIGHT saw this tread (You made me cry again smile )so I pasted my update here so hopefully all can see what your prayers can do! And I'll print this thread to show him how many people were pulling for him. (He doesn't do this computer stuff) So here's the LOOONG post:
Thank you sooo much for all your support. Don is doing WONDERFULLY! We just got home Wednesday evening. (4/21) He has a trach, 54 staples in his right arm (about a six inch diameter forearm 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. smile 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. So those words are haunting me.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 flor-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) and 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. Right Dee? 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'" wink


Caretaker/Longtime Girlfriend of Don. Dx 10/31/03 SCC Stage IV T2N3bMO right tonsil/tongue base. 35 IMRT w/8 Chemos,Biopsy 4/5/4 STILL pos. Radical rightside 4/12/4 Reoccurred late August 04 God took his hand from me November 23rd, 2004
#2265 04-28-2004 03:45 PM
Joined: Dec 2003
Posts: 2,606
Likes: 2
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Jeepster,

Praise God...from whom all blessings flow! I am overjoyed at this glimpse into your miracles. They were abundant indeed. Get used to keeping an eye open always around the medical folks. They mean well but they are getting more overworked every day and anything we do to "help" them only causes better care for us and our loved ones. They may have just worked a double or a shift and a half and are thinking of getting home to their loved ones, too. I'm not making excuses for them but they are only human, too, although we expect superhuman fetes from them always. At least, I do. Congratulations on all the great successes. Hold off on the antioxidants and essiac at least until you get some of the body's natural healing going along. Some studies on antioxidants have shown some disturbing results on active cancer and there could still be some micromets until they get the radiaiton going.

Congratulations on the birth of your granddaughter, too. You sure had a load of good things happening!

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023

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