ive been scoped a couple of x in the last couple of weeks.

the stickes are a good idea, i remember the surgeon saying he used all absorbable kinds.

the gag is too much, the drs say tehy have no ideas, only Compezine which doesnt touch it. it gets worse w/ea rad tx

they say anything they use could cause me to aspirate since the gag reflex is the naturual prevention of swalloing into my lungs

Michael, are you using your PEG enough? It will truly keep you alive if the gagging doesn't stop, and if your throat gets worse during the rest of the tx. Keep fighting. Amy

thanks Amy. The problem is I vomit with or without using the PEG since it is a gag reflex and it doesnt matter how I eat right now.

Michael,
I have no suggestions but think of you often and pray things settle down and you get a reprieve from these symptoms. I hope Seth is OK -it is so hard to be so helpless seeing one so uncomfortable in an unexpected way.
John has been hiccuping since Tuesday - he tried a thorazine today - got a few hours sleep. How are you being hydrated?
Peace,
Janet

YEAH!! It's the weekend again!

Finally, had a good day today. I have a serious sore throat, and I think some how that is arresting the gag reflex somewhat. So, as long as I concentrate on not gagging, it seems manageable for now.

My taste buds are SHOT! I had fried pickles with Tabasco tonight, and I couldn't taste ANY of it The Tabasco didn't burn (I expected it to), and I couldn't even tell. I added salt, nothing. I added pepper, nothing...I had an onion ring, again, nothing...I can taste/feel the fat, but like some cruel joke or something, I can't taste any flavors

Oh well, guess I should get used to that. Not the worst of all the problems I'm sure.

I hate the soda/salt gargle...it tastes especially bad!! How soon do I need to start using it religiously ?

I have the "miles mixture" (they call it magic mouthwash here), but the mouth pain hasn't gotten bad enough yet for me to use it...I definiately have mouth sores, and a sore throat a bit, especially BAD when I first wake up, like a massive strep throat, but usually subsides after a while....

I have a slight problem taking a DEEP BREATH, like I might be getting some lung thing! So, I am going to ask for an XRay Monday to make sure I dont get pnomonia (sp?), and the only other wierd thing is I am SEEING DOUBLE...Especially when I lay down on my right side and try to watch TV...So strange....

I normally wouldn't be worried thinking its from all the meds, but I haven't taken anything in a couple of days, but the double vision is just getting worse...

That's the very latest. Thanks to everyone!!!

MMMMkay, Michael...fried pickles with Tobasco? I feel relieved knowing that you must feel a little better trying such interesting cuisine. The only thing my dad will attempt is flat and warm Diet Sprite. My pops didn't need the soda salt until 3 weeks in. We have 10 more radiations to go, he's nursing his neck with the Bifiane that Barb suggested. He forgot all food after the 3rd week. Hang in there, we have the neck dissection before us. What's up with your visual oddity? What meds are you taking?

No wonder you're gagging! Think bland diet - you're not going to taste anything for a while anyway.

I hate to tell you the bad news but most of us gagged a lot in the later and post Tx phase. Some days will be better than others as you have experienced. Mine went from fair to horrific. I spent a lot of time in a fetal postition on the bathroom floor by the toilet. I seem to remember that my vision was screwed up as well towards the end - I even flunked a vision test at the DMV. It's fine now.

Michael,
It was good to hear from you - funny how I get a little worried when you don't post as often! You made me laugh with your diet attempts. John's hiccups did go away with the thorazine (although I think they were going away by Friday anyway). The challenge of the moment is weight loss. I thought it wouldn't be a problem with the peg tube and I could just load him up at will but he feels full and bloated a lot and resists more than 4 cans of jevity even if given very slowly. Last night he had a lot of residual in his stomach so I couldn't even give him the normal tube feeding amt. What's up with that? He burps more with the feedings or when he swallows food (yogurt, liquids, shakes). But we're halfway through and yesterday I could see that most of the chemo effects were gone - he just seemed himself again. Take care of that true part of you that is you. These various symptoms are a pain but what I resent most about them is when John doubts himself as loved and lovable because of them or when he feels weak or a failure because he is down with one symptom or another. Let's face it - they're throwing everything but the kitchen sink at you guys and you're taking it.
Peace,
Janet

I agree that by next week (week 3) I will most likely be on fluids only and soon after problably be relying on the PEG exclusively.

My family is here, and we went to a rough and tough BBQ last night in the meatpacking district. I haven't had fried pickles since the 80's in Austin, TX, so I HAD to try them. They were not too crispy so I managed ok, just dissappointed I couldn't enjoy them. (all 3 that I had:) The Mac & Cheese went down easier, but again, tasted like eating a styrofoam cup.

My sore throat is severe enough to restrict my diet to softer foods. Nothing like crackers, bagels, etc.

But, I am trying to eat as much as possible since I know I can't afford to lose anymore weight (Ive already lost over 20 pounds).

Eating actually helps the sore throat a little still, but I know it will be the opposite soon.

I get the next chemo (YUK!!!!YUK!!!!YUK!!!!YUK!!!!) the day after Labor Day -- The Doc has offered to hospitalize me for 2 or 3 days if I prefer...I haven't decided yet. OF COURSE, I'd much rather be at 'home' each night, but he makes a good argument that sometimes a different setting can break the cycle of the side effects, plus constant hydration and well regulated anti-emetics make a good argument for it. Does anyone have a comment?

I think I have the gag thing under control with mental imagery and the pain as a distraction back there, but I hear you guys that say it can get much worse...UUUgh! There has to be something that can be done?!?!? Maybe accupuncture..?

I had accupuncture last week (Monday) for nausea, it seemed to help a tiny bit, and I'm going back this week, and then again after chemo. I've heard some people have good success with this.

Sloan has a great Integrative Health Center just up 1st Ave. It's like a 5 star spa inside, and we met last week with their director of nutrition, who is very open minded to complementary medicines.

I still have lung pain, and will followup with the Dr on Monday since I am worried about getting an infection or something during tx.

Hi Michael,
Sounds like people are really offering you some great alternatives to ease the way. I want John to try Reiki. I don't think gagging has been a problem for John (end of week 4) so I wouldn't assume you will have it. It seems that there are a lot of similar reactions/symptoms but not necessarily to the same degree. Since you asked I'll weigh in on the hospital stay question. I as a caretaker would love the option of a 2 day stay post chemo for John. That has been the most trying time so far for us mainly d/t worry if everything that can be done is being done to ease his symptoms. At least in the hospital, you'd be assured of IV hydration and access to someone who could witness your reactions as they occur. I'm a nurse but it's awful to be so uncertain in this arena as to what's to be expected, tolerated or treated. I'll have to ask John what he would want in retrospect. I would want to stay at the hospital too to be with him -I'm aware hospital staff can only do so much. Enjoy these days- the Spa sounds wonderful - today is a good day here.
Peace,
Janet