Greetings from those who have recently visited the radiation zone this a.m. followed by a bonus field trip to the endoscopy suite where you will all be pleased to know that 125! people were scheduled today to have tubes put down their tops and up their bottoms...it seemed a bit hectic right down to the numerous IV bags perched on multiple poles waiting for new owners. The best part was the nurse who assured me "they still make people feel like people here even though Katie Couric started a trend and now everyone wants a scope and we are crazy busy".

I was a little skeptical at the outset when they told Dave he could keep his jeans on because he was only having an upper endoscopsy...hmmm...aren't we also here for a PEG tube placement?

So okay, maybe someone can call ABC and have their oral cancer check on TV and the same result will happen.In the meantime though, I started to get that antsy protective feeling I always get when Dave is in the clutches of the medical establishment and...Antenna going upward!

True to form I was pushy once again to keep Dave safe and me sane. It all started when the first nursing assistant wanted to whip him away to the back area to change and I said I wanted to come since we had not yet MET the doctor who would be inserting the PEG tube and I thought it might be kind of a good idea since you do have to sign that minor paper designating who will speak for you if you can't and it helps to know what you are speaking about!

Anyway, this caused a bit of a stir (I swear,speaking of sex and PEG tubes, maybe she thought I had strange endoscopy changing room fantasies!). I almost put on a johnnie because noone would have noticed me and I could have had a bonus scope while I was there. Anyway, so I tried talking to the charge nurse who immediately reprimanded me for holding a cup of coffee while in the sacred area(Bad girl!!) and being a good nurse conscious of regulations, I tossed it out only to discover that all of the nurses at the desk 5 feet away were drinking some! Ah, the control factor!

The REAL stir happened when a fellow patient who saw me then wanted to have his wife come back to the waiting area too which led to another nurse pointing at me and saying " I don't know why she's back here...we usually don't allow it". Oh well, we aren't out to make friends...just to keep our bus safely on course and drive we did, to the PEDIATRIC holding area where Dave's stretcher was deposited next to a lovely mural of kitties and squirrels while we awaited meeting the surgeon who actually turned out to be very nice, skilled, and professional! There is a god! It was kind of funny to watch Dave react as the teenager next to us answered questions about the color of her stool since the bowel prep and the when her last period was...funny, for once, noone asked Dave about pregnancy.

I did my "he has a palate and arm graft so be careful" dance(translation-have you seen one of these before and watch what you do with that endoscope, baby!) then they were off...for the big insertion which was supposed to take 30 minutes. Okay, so I was good-I waited 90 before I inquired if Dave was actually still back there only to be informed that he had gotten to recovery ages earlier...I just wasn't told right away...they probably knew I'd be back.

So, I greeted Dave in recovery to the happy cacaphony of fellow patients passing post-colonoscopy flatus and munching crackers. All in all, a lovely day and a new chapter for our book.

As I write, Dave has merrily pushed water and Boost into the tube and he's off to see the dietician tomorrow to calculate his calorie needs.
I've been thinking about the aphrodisiac angle...what about a line of G-tube lingerie?
I'm thinking this is a good project for Dee since she needs to jog her memory.

You can laugh, but I do remember attending a lecture once during which a man who had a colostomy brought out animal print satin bags designed to fit over the ostomy to create a romantic mood.

All things considered,another adventure filled day!It makes going to work so dull in comparison to going with Dave!

Hope you all are well,

Kim

See Kim, I keep telling you, we the patients are the ones that have it easiest...now you've proved we also get to have all the fun...do I hear envy in that caretakers voice??? You sound very much like Mike is with me...to a point he is the nicest guy on earth especially to me, but I call him my Incrediblre Hulk...you won't like him when he's angry, especially if it has to do with how he thinks someone may be misstreating me or not responding appropriately.
You keep it up, it's the best thing that can happen to us and for us.

In another vain I am glad Dave went with the PEG -he will fair must better through this.

I'm still waiting to hear the answer at the end of radiation when they ask you guys if you want to keep your mask. Bronze it maybe?

Take care,
Dinah

Kim,
What an interesting morning. Getting my PEG was much less eventful, until I was about ready to go home and air got in my diaphram or something, and I fell back writhing in pain. My mom pushed me back to the operating area where they said nothing was wrong. Then about 15 minutes later, it happened again. ( Notice I did not tell you this story until AFTER Dave got his PEG! ).
From that day forward though I have never had any pain or problems. Sounds like you guys have choices of food. In my case the dietician prescribed a particular brand called Ultracal and MD Anderson sent me home that day with drip bags and a few cases of the stuff. Now I simply call the home patient service and a guy shows up in a van a couple days later with stacks of cases of the stuff. I sign my name and I guess that I, or insurance or someone pays for the stuff!

Anyway, I am glad that things went well for Dave and you today. Now all you have to think about is constipation!!

Danny G.

When my mother had her peg tube placed it was supposed to take place in the OR at the same time as her radical neck. Of course the ENT was running late and the doctor who was placing the tube couldn't wait so they did it before going to OR. After the PEG tube and on her way to the OR, my mother who was a little light-headed, from whatever they had given her to place the tube was on a gurney in front of the nurses station with her children. One of the nurses asked her if she had ever had Valium before. My mother replied I have heard of Valium , but I have never heard of Valium B-4 and I'm a retired nurse. Is that something new? That remark caused everyone to erupt in laughter to the point of tears. One of the nurses commented that it was the "happiest" radical neck she had ever witnessed.

Kim,
How are you and Dave doing? If I am correct we haven't heard from you in a couple of days? How is the PEG working out?

Thinking of you,

Danny

Hi Danny:

It's so nice to have someone notice when I'm missing from the site for a couple of days! Or, maybe you guys just needed a break from my constant posting! Anyway, I haven't been able to log onto the site for a whole 48 hours and it's been like missing a limb! After a nice dose of Roxicet, Dave finally figured out that my "cookies were blocked" which I guess is the internet equivalent of constipation and must be because you mentioned the topic recently!!!

Anyway,I'm back and more aware than ever what a lifeline this forum provides for me on a daily basis! Now, this is comical...I felt far away from you all not being able to post and it had nothing to do with geographic distance!

So, with cookies unblocked, I can tell you that Dave is still feeling sore around the PEG tube site but it looks fine and is working perfectly well.Maybe these tubes aren't meant to go into people with toned stomach muscles? I know you didn't have that experience, Danny (which is not a statement about the state of your stomach muscles!) but did anyone have soreness for a few days after the insertion? I'm used to elderly clients who happily yank their PEG tubes out without wincing so I'm a bit puzzled. In any case, it's a big relief for Dave not to have to worry about eating if he doesn't feel like it.

The Duragesic patch is working well and the mouth pain is under control but still there slightly. Of course, the graphic descriptions by Dave of "coughing up chunks of mucous" and the gurgling in the night aren't exactly romantic but we are adjusting. He is also having some bothersome hiccups so he is putting the feeding in more slowly.

Okay, so boxers and panty hose aside-he wants me to ask you where you put your tube when you aren't using it? Such a personal question but I think he means do you tape it or have you male veterans rigged something that works better?I'm almost afraid to know the answer!I reminded him you live and Texas and the answer could involve cowboy regalia! Maybe OCF can invent a PEG tube holder with logo?

Tomorrow marks the start of week #4 and Dave is thinking radiation is getting old and so is he. I think the hardest part of this is knowing how robust he looked post-op compared to right now when he looks tired and pretty fed up. He is using the Biafine cream but the sunburn appearance has definitely blossomed on both sides of his neck. No blistering or peeling though. Mostly, he thinks it's a full time job to keep with getting to radiation, dental trays, skin cream, feedings, pain meds, and the glorious medical establishment.

Of course, as if all of these aren't enough of a thrill, Dave asked to have a scan of his chest and abdomen and they are scheduled for this week. I know this step is supposed to help with peace of mind but can someone PLEASE pass the valium!!

So, what is new with you Dig? I keep meaning to ask if you got the Triple Mix mouthwash?

It's so good to back!

TTFN,

Kim

speaking of peg tubes, I asked for a shorter one before I left the hospital.........well they put a smaller one in instead, which prevents me from having my Gainer`s Fuel, yogurt, and everything else with calories I can mix up........jevity plus alone is not going to build me up for next surgery.........so have to ask our surgeon up here today for a tube change....I got a couple months to get back in fighting shape..........Packer

Hi, His Peg tube is new and he will feel sore for awhile. I get my replaced every 3 months and it even feels a little sore for a day.They do seem to poke you a lot till it gets sore.One day they had to put more air in to get my stomach right and the air went down my small intestings. I said ,will I get the burps ? They laughed! That was not a fun nite for me. I once got mine hooked on a laundry basket and pulled it out, that hurt.The next time it just fell out when I was sleeping.I guess the longer you have it the easier it is to get out.Dave is fine. gnelson gnelson

Kim,

I for one was happy to hear that Dave asked for a scan of chest and abdomen...would that I had known what I know now.
Believe it or not it sounds as if Dave is doing just fine and weathering the whole thing well. The whole radiation thing just gets old...mentally and physically. He'll do great and the best part is yet to come. that's when it's over and he starts feeling better. It really is gradual, but the first day you wake up and realize you feel pretty good is special.

You take care,
Dinah

Kim and Dave.......Sounds like things are moving right along and that Dave is holding up well with the RAD and now the PEG. I'm so glad he decided to go for the PEG after all. He'll be glad he did but you probably already know that!

I was sore as heck the day after the PEG was inserted but after that I was pretty much good to go. And I never once had a problem with it. I just taped the darn thing down when not in use. I agree it is not the most attractive thing in the world but....you gotta do what you gotta do and besides, it is just a short term thing anyway.

The other thing I wanted to mention is that if your insurance co. decides they aren't responsible for the Jevity or whatever food Dave is on, make sure you fight them on that issue. My insurance co. at first denied any coverage of the Jevity. It took one very nasty and detailed letter from my Oncologist and after that, I had more Jevity than I knew what to do with! Go figure!

Thanks for keeping us posted on Dave's progress!

Danny: How is your swallowing coming along? I know you had the barrium swallow, did everything come back OK with that? IS it getting easier for you to eat....are you enjoying any foods at all?

Sincerely, Donna