Thanks David - excellent point. I'm going to go ahead and order it today.

Update and questions. Dan has completed 26 IMRT and 6 cisplatin. The past 48 hours the dramatic decline has started. Pain has increased dramatically, swallowing ability decreased, food he could eat Friday he cannot eat today. He is sorely lacking in the calorie and fluid area now and I am not having much luck today to get anything into him. Today he has had maybe 25 oz of water and a small helping of soft steamed veggies. He is about 10 times more tired today than Friday. He has not really had a problem with nausea since we started, but today it is horrible. He has never taken any medicine without me saying do you want a __ pill... today he keeps asking for meds. Then to top all this fun off he has developed some pretty bad burns on his neck and behind his ear. Blistering, popping, skin coming off, etc. We've been putting the silvadene cream on it and trying to clean it - but I tell you I am woefully inadequate at burn care. I've spent the last hour searching here and online for some tips and not having any luck. I think I told you guys that his WBC was 2.5 on Friday and his BUN was bad enough that the nurse had to go check to make sure he could get treatment.

I know this is pretty much how it's supposed to be, but wow it seems to have all hit at once. Any suggestions on the burn or on any of it?

Michelle- Neil used Biafine cream. I don't know if that's the same thing. I'm so sorry you guys are having trouble. It really will get better eventually. You might want to talk to the doctor about a PEG. The effects of the rads will continue even after treatment is over. Hang in there sister!
Sue

Thanks Sue - I'll have to look that cream up and see what the difference is. We will definately be asking for a PEG and probably a PORT as well.

I was supposed to have an outpatient procedure done on my back tomorrow to try and relieve the pain (since we can't do surgery right now), but based on what is happening today - we will need to see the doc tomorrow when he's in for his radiation treatment.

I am a little stressed today and overwhelmed and feeling inadequate, but I know that's normal and we'll make it though. It's just tough sometimes - as of course you know!!

I need to go and get David some supper and a bath and story time, etc. I need to eat something as well, but just don't seem to have an appetite today.

Michelle,

When my neck got so burned at the end of treatment, my nurses gave me these gel bandages to help with the healing. They come in sheets and you cut off the size you need for the different areas. I probably looked pretty weird there for a couple weeks as I applied the gel patches all over my neck. They really helped with the healing and it felt good on too. My skin didn't dry out and crack like it did before I had the gel stuff. I don't know the name, but I am sure someone else on here or your RO nurse could help you.

Hang in there it won't be long before the treatments are over and things will be heading in a positive direction.

Cindy

Michelle:

When I was towards the end of my radiation treatments, my neck had open oozing sores on it. Putting on the rad. mask was almost unbearable. The techs would wrap gauze over the open sores vey lightly. After I was finished with the treatment, I would use the prescription beta-val cream. I have used the silvadene cream several years ago on a severe burn I had. It worked very well, no scars at all. Load up the cream on your hubby and dont rub it in, let it soak in and put a peice of gauze over it to protect it. That should help him to feel better.

Watch your hubby's liquid intake! Keep a very close eye on it. That is what put me in the hospital twice, the first time when I was about where your hubby is now. Second time was 2 weeks after treatments ended. If necessary, he can get hydration while doing his chemo, just talk to his doctors and tell them he is how much fluid intake he has.

I wish I could tell you its going to get easier, but it will be at least 2 weeks after treatment ends for him to start feeling better. Ive been following what you write and it sure sounds like your husband is a real trooper. To me, he has done amazingly well to not be showing the major side effects til now. Thats due to having such a great caregiver!!!!

Hang in there

Wow Michelle,

I feel your pain and anxiety. Bill seemed pretty OK one moment and over a weekend went south really quickly. The only saving grace was that he had a PEG and I was able to push fluids and nutrition. You don't have much control of that and it must be very frustrating.
Per your posts, I am very worried that Dan is not getting enough fluids. Glad tomorrow is Monday and you can call your docs...its hard to feel like you are being a pest, but I think that you need bug them if Dan continues to act so sleepy and weak. It couldn't hurt to just have his MO administer fluids. As Christine mentioned, the dehydration really sneaks up fast!

I think we all wish we could be more help when times are so rough but know that we are thinking of you and praying that you and Dan have the strength to endure.

Things will be better in the not too distant future. Right now, you have tunnel vision..one hour at a time...I understand and have been there. You just get thru the day. It WILL get better.

Hugs, Deb

Michelle- Please remember to take care of yourself also. You won't be good to anyone if let yourself get too run down. It helps to sit down with a cup of hot tea and let yourself breathe. The stress is most definately taking it's toll on your back. I'm thinking of you.
Sue

Well I am very angry right now. Dan woke up about an hour ago and I was checking on him and asking him could I get him some food/water/etc. He said maybe in a little while. I told him I was concerned, etc. and he said he was fine. I mentioned going to the doc tomorrow, etc. and he said well we're not doing aything tomorrow but my radiation treatment - I have a big day at work. After a "disagreement" he said I could go with him Tuesday, which is the regular day we see the RO. He can be so hard-headed and God knows I don't wnat him to hurt but I guess he'll have to hit bottom to realize what kind of shape he's in. After we "talked" he heated up the soup I made yesterday and poured a large glass of water. I hear him in the living room - literally choking it down. I had called my dad earlier and cancelled him as my driver tomorrow for my back procedure. I just called him back and told him I guess he might as well come on and get me. If Dan's not going to let me help him nor go to the doctor tomorrow there is no need for me to sit around here and cry and worry about it. I need this procedure for my back, but of course would gladly postpone it to get him some help.

I know what he's doing to himself and all the things to say to him. I failed tonight. He is just being an ignorant A*&^. My dad and step-mom offerred to talk to him, but I know it won't do any good it will just make him angry.

I told him he obviously didn't need me right now and I was going to bed. So I'm in here watching TV using the laptop and he's in the there eating.

Oh - he had the audacity to say well I'm eating now so it's fine. I said I am so happy/proud/etc. that you are eating now, but you are water and calorie deficiant and this one potential meal is not going to make up for it. You've been this way since Friday.(and he may not even be able to get this down or keep it down). Then the fool stepped on the scale and said well I'm not down much (he wouldn't tell me the number) and I said at this moment I'm more concerned with everything else than the weight. That's not the only indicator - if it was then why do they do your bloodwork. He just got quiet after that and poured a bigger glass of water.

UGH sorry to dump this on you guys - I am just soooo frustrated right now. Thank heavens David went on to sleep early tonight. I don't think I could handle him in the mood I'm in.

Thanks for listening and I guess Dan's going to have to hit bottom before he starts listening to me. Just pray that he doesn't kill himself in the meantime.

Michelle: I could have posted every word you've written about Dan....Your posts read like the diary I could have written during Buzz' treatment.
I had to 'back off', just like Deb and some others here will tell you they had to do....Trust me, he'll come back to his senses as his treatment progresses!

Buzz was only able to tolerate 28 of his 33 scheduled IMRT's because the burns were so severe. I SLATHERED the silvadene thickly on Buzz' neck, (just as Liz (Cookey)directed) then LOOSELY wrapped very thin wide gauze around his neck, before putting on a loose-fitting T shirt.
Although Buzz had a PEG tube inserted before beginning treatment, he didn't want to use it, and insisted that it be removed soon after treatment ended. Buzz now weighs about 145 pounds and looks like 'death warmed-over'.
NOW my 'superman' wishes he had cooperated when I 'bitched' and begged him to EAT and DRINK more.
Oh, well, I won't write a book, but I COULD!
My thoughts and prayers are with you both. I also pray that you will be blessed with some relief from your back pain following your procedure tomorrow. The pain 'further down your back-side' will hopefully one day thank you for your persistance and constant encouragement!

Lois in NC