Hi, I have read all of your posts but the answers you need are better done by others who have gone through what you and Dave have.I have wished you well all along the way. I agree with everyone about the PEG tube.It helped me when I could not eat and kept me healthy. It was kept in while I waited for more surgery.I have had it for 2years, I have not used it for a year and a half, I get a new one every 3months and I flush it once a day.In two weeks I will have to live on it again for at least 3 months, I hate to go back to it, but I will be glad I have it.I think water was one of the most important things I got from it.Even this summer when I was working outside in the heat I would put extra water through it and it made my mouth feel better. I have dry mouth just from the surgery, I have never had radiation, we will not go there its a whole other story. I noticed that all these brave people on this board will have anything cut out of them,will have radiation and or chemo, but mention a PEG tube and they flip out, go figure.I think it is just the idea of tubes attached to your body, after all the tubes I had they said I needed a PICC line,I flipped, I remember saying I don't feel human any more, My veins crashed and My arms are wrapped in warm towels and I say no I just quit.Now we all know I needed an IV but!My ENT gave me a shot of something REAL good and explained my situation. Which I knew ,but it sounded better after the shot and a calmer head.This is the only time I ever balked but tubes and lines coming out of your body everwhere is a downer. It too was a piece of cake and came out very easy. The second one I had quickly, just rolled up my sleeve and said lets go. This stuff is the easy part, All of you , you have done the HARD PART. The tube will help you maintain the weight and keep liquids in your system, it is your friend. I have gained 18 pounds above my normal weight, I guess being denied food for so long did it.I told my daughter, well when they start reconstruction I will lose weight from surgery and eating from the PEG tube for months. She said that was the worse diet plan she ever heard of, hey, works for me! Good luck to Dave and if the Doctor is willing, get the PEG. gnelson

Hi gnelson and all of our friends:

Once again, many thanks for wieghing in (no pun intended!) about the value of the PEG tube. I have shared all of your words of wisdom with Dave and it has helped him make a resolved (and necessary choice) to ask for the PEG tube placement ASAP when he sees the radiation oncologist this morning.

It's the beginning of Week 3 and Dave feels like hell-more secretions, sore throat, and crashing fatigue. He is also going to push for a pain patch this morning so he can start regulating and controlling the mouth pain before it controls him.
I think we've tried very scrambled egg, mashed potato with gravy,smoothie,pie,and frozen yogurt bar on the planet this weekend. As usual, you guys are correct-cardboard is the running theme. Dave is a smart guy and he knows he can't maintain his weight on a few bites here and there.

As gnelson also echoed so well, the symbolism of tubes and wires holds a power far greater sometimes than is apparent at first. Dave sees himself as fundamentally a strong man but this radiation experience is like no other and the rays seems to be able to bring even the biggest and strongest to their knees. It has been a life changing weekend realizing that even small adventures, like attending a birthday party (Dave lasted about 2 hours), can be enough to wreck the rest of the day on the energy front.

We are trying really hard to have a focus to get through each week. I think this week the idea is to reframe our existence in a way that enables us to get through the next few weeks of active treatment (then we'll tackle the months to follow). Trying to view the PEG tube as a helping tool to helping us drive our own bus (by the way, you are all on it!) toward recovery.

Now, if only you didn't need a referral for the tube! Here we go again!

TTFN,

Kim

Hey, Kim and Dave, remember Packer has had a peg tube for a year, and blue pepsi is a favorite.........Nothing lasts forever, and any help we can use we`re stupid not to........don`t like that word, but we need too use every tool at our disposal..........Packer went thru it without a tube and I remember how he suffered........let us know.........we all love ya.............Dee

Hi Guys:

It's Kim but under Dave's screen name. He is currently too tired and too busy mobilizing secretions (yuck-only you all would understand!) to post but he says thanks to all for the input. He spoke with the radiation oncologist today and the PEG tube and pain patch are both a "go".When I called from work today Dave reported that he was too busy spitting up his oral mucosa to talk which isn't exactly the most romantic thing a girl hopes to hear during an average day checking in with her partner!

So, probably nervy of me to talk about this here-but I was making bad jokes about the value of intimacy with a PEG tube and its potential as an aphrodisiac but even I am coming up short on that connection!The quest for normalcy goes on but looking more and more dubious by the second!

On a more practical note, the Nestle rep and I are playing telephone tag so I will be back to all of you with anything I learn about clinical nutrition options.

Thanks for keeping us inspired,

Kim

P.S. My son likes blue pepsi and I tried it in honor of Packer and it is SO sweet!

Kim, I may be coming in on something here without all the facts (something I never do -- yeah, right) but this is a response to your mention of Nestle. My PEG food was Nestle ProBalance, vanilla. 300 calories per can and all the other good stuff. Kept me going just fine. Now I will butt out.
Joanna

No one has been a bigger pain in the neck about the PEG tube than my mother - it took 5 days in the hospital due to dangerously low levels of potassium and dehydration for her to realize she HAD to have a PEG if she was going to live.

And she is finally doing it herself - I've got to say I was getting a little tired of being tied to the tube myself! The best thing we have found is ScandiShake. You can order at www.scandishake.com.
It is 600 calories per 8 oz. of whole milk. It is the only thing that is putting on a few pounds - slowly. The thought of doing 7 cans a day was more than my mom could tolerate. I would strongly recommend this product and there is no problem with flowing through the tube.

Cynthia

Hi, Can't think of any jokes about sex and a PEG either, just tape it down and forget it's there! I did have a problem with the tube working out of its "skirt" and when I zipped up my jeans I got it stuck in it.I have to say I don't know how the men do it!I later found a way to keep it where it was suppose to be better,I cut off the tops of old panty hose and used them. It worked great! I don't suppose Dave would be in favor of that?gnelson

Hi Joanna:

No need to butt out-you give great advice. I had been discussing the Nestle product "Additions" after it had appeared in a post as a good supplement to add calories to hot food. I am in the process of checking out a variety of supplements that might work for Dave and will also look into the Pro-Balance Formula and thanks for the tip!

Speaking of butts, Dave is slowing losing his thanks to the thrill of radiation and he is now down almost 19 pounds over the last few weeks. As luck would have it (and the fact that me, the pushy partner went with him today), we got a referral for the PEG tube insertion and got on the procedure list for tomorrow after there was a cancellation and we grabbed the slot. We are also scheduled to see the dietician on Thursday so she can determine what sampling of liquid delicacies would best suit Dave's tube-god knows his palate is nuked!

Anyway,we had to ask for a referral note to bring to the surgeon which of course I read in the elevator on the way to deliver it...I love it when the MD writes that HE had a discussion with US and SUGGESTED the PEG tube. Hmm...now how did it actually happen again and who actually suggested it to who? You all also be happy to know I'm listed as the "supportive wife type who agrees to the procedure" and I get a gold star for my good behavior when you read the note.

I'm learning not to mince over small things but I do chuckle because some things never do change and the doctor always thinks he knows best!The whole medical team is on the bus with us but they are in the back and all of you are in the front where it's less bouncy.Dave is still in the driver's seat with his new handy dandy Duragesic pain patch! Feeling irreverent today...sorry!

Hope this day finds everybody okay. I think this is post #100 for me so I'm wondering if I should be more reserved for a while?

Kim

Kim and Dave,
Wishing you all the best. Maybe I will no longer be the king of mucous, or at least I will have company!
When I see people smoking, I cannot help but think, "Here I am fighting to stay alive and there you are voluntarily sucking down cigarettes ".

Danny G.

I had to laugh about your doctor comments, they rang true to me. By the way do you know what the difference between God and a doctor is? God knows he is not a doctor.......