I feel like our lives are spinning out of control Bad news is coming faster than I can plug my ears. We went for Don's first post surgery CT and chest Xray last Tuesday along with a visit to his swallow therapist. Hoping to get a referral to try Vital Stim to try to speed up the swallowing therapy results. Swallowing has gotten worse, his voice has gotten(more)garbled and he's been "loosing" some of his nutrition due to coughing jags. Now Don has aspiration pnemonia. (I suspected that because of the "sick" odor) but he didn't believe me because he wasn't running a fever. But even more frightning is his LEFT ear (other side) has been giving him trouble and with these other issues the Dr. suspects a reoccurance already. We have a new PET scheduled for the Sept 14. (??? Waiting till he's clear of pnemonia). Vital Stim is out the window.. NOTHING by mouth and spit saliva into his kleenex. I'm beyond being able to even think clear this week. I was off Tuesday but worked the rest of the week and now Friday evening it's catching up to me. I feel so helpless..angry... we've been fighting so hard. Physically he's still able to do many things but he doesn't want to. He wants to sit in a dimly lit living room and watch TV, work a crossword or scratch a lottery ticket,or stare out the window. Day and night. Even before the pnemonia. Waiting to heal. I don't know how to deal with it when depression has me by the soul too. We were so social. We were never home. Now he can't eat or drink so he doesn't want to do anything. "I'll take you to the movies when I can have popcorn".... I understand but there's a HUGE chance that he will NEVER have popcorn and I'm afraid he's letting time slip away. He does try to golf 9 holes once a week but he use to golf 18 nearly every day. I mean, I hear all of you talk about living every day to it's fullest and making every day count. I want to do that with him but I don't want to fight him to get out of the recliner if that's what he wants. I'm trying to find out how we can get a shorter line for his PEG so he can feed while we go for a ride and hang the bag on the shirt hook (disguised under a shirt).It's gravety feed and the tubing is too long to get a down flow in a small place. Any ideas? He doesn't feel he's "portable" when he has 10 cans of Protain to do each day. I feel like MY life is slipping away and I'm sooo scared for him. The Drs have been so busy dealing with the physical set backs, that no one is addressing his mental health. I know I'm probably as depressed as he is, but I open the shades...go for a walk...watch a comedy... burn a candle and cry hard when I'm alone. What can I do for him? I hope we can kick this infection quick and he gets a good "feel good" day or two. I know I'm rambling but needed to vent AGAIN.. Thanks isn't enough for you guys .. you all seem stronger than me and I'm not sick. Go figure.

Well done Girl
If you don't let it all out you will end up screaming in the street.. I will let you in to a secret.. me and I suspect many more do have have days where we just sit and blank everything, perhaps it's natures way of helping us deal with it, I don't really know. You need some space girl, just an hour a day, just for you, the caregiver is the most important person at this point so look after you, go for a walk, meet a girlfriend just be you for a while.. and keep venting here if you have to.. we are all with you on this one...
Sunshine... love and hugs
Helen

Ok, all together now, ARRRRGHHHHHHHHHH!

Didn't help but it was worth a try. I feel your frustration. Been there and done that with Scott. I can't offer anything to make you feel better except I totally empathize. I am so sorry this is so hard. I'm sending you a private message.

love,
Christine

You both are in my thoughts and prayers. As a caregiver also, I have some daily routines to help. I always walk each day with my dog, and that is my time to cry to God and feel his presence. I still get scared, but I know He is there to hear and give me times of peace. I also have a wonderful support group from our Bible study that I can call and cry or vent to anytime. This group consists of 10 other people who have been there and helped from day of diagnosis. It is so hard and frightening. My husband had to stay put for a few months, but when he felt better he was up and going. He has pains from treatments, but tends to want to go and go. I have a harder time going as I do get depressed. I take Xanax and Ambien when the need arises. I will pray for Don to feel better; then you know he will want to be out and about playing golf, etc. I get popcorn at the movies and Dan trys to eat a little and almost chokes to death...but he keeps trying!
God bless and take care,
Debbie

It seems that having popcorn at movies is a popular American culture. I am not particulary interested in popcorn and now I know it will not be fun anymore eating the dry stuff.Not impossible but I need to sip water with every bite. The first time I went to movie with my family after my illness, my husband passed me the bag full of popcorn and I returned him with an angry look. I sighed deep in my heart that I could not eat food that ordinary people could. Then I changed my attitude and instead of feeling pitiful, I told myself that popcorn is not healthy. It is fat and may also damage my teeth. So now when my husband and 2 sons were enjoying their popcorn at the cinema, I just focused on the movie. I didn't miss anything. So Dan doesn't need to force himself too much.That may add further mental stress. We still have a lot of health food waiting for us.

Karen.

How well I know what you are feeling..you are doing a great job ,you cannot force him to go if he has no interest. Is he on anti-depressants? He needs to be. He is scared out of his wits.
Please dont have any guilty feelings..Helen is right you need to keep your own strength up. Work was the haven for me, I am a hairdresser and you can`t go long in a salon without laughter. Hell, go get your hair done..have a massage..my friends used to drag me out the door for an hour or two bless `em.
Take care
Marica
Caregiver to Pete. SCC stage IV base of tongue DX 4/03 finished treatments 7/03 and doing great.

Been on both sides of the fence Jeepster, from the caregiver side it's absolutely no fun at all either. You've been given great advise, take at one afternoon or evening a week off and get together with friends, go shopping, lunch, something for YOU!... If you're mentally and physically worn out you can't do much as far as being a caregiver.

At this point, Don just probalby feels like hell, both physically and mentally. He's probably greiving for his "old life" and hasn't come to terms with things as how they are now. Be supportive, don't force, but let him know in a gentle way how you feel also.

On a differnt note with the popcorn, yes, its an American thing, have to have the popcorn with coke at the movie. Preferable with LOTS of butter or what ever they use for butter these days. The popcorn itself isn't fattening per se, but the butter is what does it.

Remembering about 6 years ago when the only place for foreigners here to live was the Silverland Hotel, and Wal-Martjust opened up here in Dongguan and lo and behold, they sold microwave popcorn. Another American and I bought several bags and took it back to the hotel bar and had the bartender microwave it up for us. The bar staff stood and watched, their eyes getting bigger than the bag as it expanded in the microwave, as they were sure it was going to explode! After it was done and we opened it, all gathered around and stared, turned out they had never seen popcorn, much less microwave popcorn some of the staff tried it, some were afraid of it!!

To two starved for western food American's you'd think we were eating gormet food. Things are much different now!!
Bob

Jeepster,

My husband Jack has many of the same problems as Don. He can't eat or talk and has not been able to get rid of the trach tube. That is his main complaint because of all the coughing the secretions cause. He has not suffered depression which has been so helpful to me. I hope Don can be given something to make him feel better mentally. This will sure make you better too.

The last time he had his feeding tube changed, they put in another valve that made it shorter. This made it a lot handier. He doesn't eat in the car often. When he does, he hangs the gravity bag around the visor. It probably looks wierd to people driving by...who cares. It is slow eating when it is hung so low, but there is no rush when you are just riding. I suppose he could use the syringe he uses for the meds if he was in a hurry to eat when on the road.

It's quite a coincidence that you live so close to us. We are from Wausau. Send me a private message if you want me to call and give you someone else to talk to.

Lowanne

Jeepster,

I have a great idea for the gravity feed tube...or at least it seems great in my simple mind. There are some little tube extenders either in the hardware store or a science supply store that are used to splice two pieces of tube together. If you get the hardware store version be sure and clean thoroughly . They are somewhat cone shaped on the ends so they fit different sized tubing. Cut the tube to the length you want and splice it back together.

Another thought, when I was feeding intravenously and taking bags of fluid a day, the home healthcare agency brought me a portable pump that is in a backpack to encourage me to get out and do things. I watched the entire football season with my youngest son while fluids were pumping into the veins, sometimes feeding as well. They told me there was an enteral feeding pump that was portable, too.

On another note, does Dan have any golfing buddies, friends from church, work, etc.? As Helen mentioned, sometimes it is easier to just "check out" than deal with this disease and I had a friend come over and we watched movies once a week. I usually dozed off during the movie but it was a lot of fun to have someone around.

Take care of yourself. My wife loves to get her toes done. If I had ever discovered something so affordable could do so much, I would have sent her daily the past four years!

I think one of the toughest things about a disease as ravaging as cancer is that each of us deals with this in such unique ways and my wife used to get so mad at me because I wasn't doing things the way she wanted me to. Over time, we found ways to compromise by me giving in totally . I hope Dan sees everything you are doing to help him re-establishing some type of normalcy in his life. It is great he is golfing even 9 holes a week. Maybe a secret phone call to some golf buddies would get him out a couple of times a week. Just a thought.

Another tough thing to consider is that you are not responsible for his behavior. Letting his lack of "want to" affect your serenity is not good for anybody.

I remember going to see the Passion of the Christ movie and even though I had not had popcorn for many months, I could not go to the movies without popcorn. It was not the most fun experience I remember and I threw most of it out but just the taste of that hot buttery stuff rolling around in my cotton lined mouth and that sip of the sweet, carbonated thrush-inducing coke was just awesome.

As always, I am hoping for the best for you and Dan.

Ed

Thanks everyone for some great ideas. I'll check the hardware store Ed, That sounds like it will work! I gotta catch you on his name though Ed. It's Don It's a hard habit to break if I let it go. Lowanne, thats a great idea too. I sent you a message. Things are getting worse since I started this post. We don't go for the PET til the 14th but I have a call out about his voice. It's bearly intelligible now and he will only answer the phone if I call, I call only with yes or no questions or info for him. Is this from the pneumonia? Why is it getting worse? He's been on Augmenton for a week and half. We don't go back to Madison for another week and a half. I'm afraid if something bad is going on in there it's sure happening fast. What if it affects his breathing? Has anyone else experienced this? This disease keeps taking and taking. Can't eat, can't drink, can't talk. Now he wont even golf cuz his buddies can't understand him. (I'll be talking to the buddies) He had a bad experience at the counter of a gas station and couldn't talk well enough to let the cashier know he was screwing him out of 32 cent. 5 cents off per gallon is 35 cents when you get 7 gallons when I went to school. He got only a 3 cent discount on the gas. ARRRGGGG it's not the 32 cents... it's the principle. If I'd have been there I'd have come unglued! God knows I'm ready to crack right now anyway. We finally filed for his SSDI yesterday, They "TERI flagged" it so we can get a decision within 30 days. That is something I never heard of before. I did a search and learned a little more. They only do it if someone is terminal or not responding to treatments. Just a piece of info I thought I'd pass along. I know SS disability can be a nightmare in itself when you have to apply.

Jeepster,

Gosh, as many times as I used "Dan" it may be easier to change his name than to correct that many times! So sorry.

I had a "button" installed and the orginal PEG tube taken out. I enjoyed it more because I didn't have the contraption hanging out all the time. It has a valve in it so it doesn't leak and you can put one of two different tubes in when you need to use it. I had a small diameter one I used for meds and a larger one for feedings.

My voice was hardly intelligible off and on and even still everyone makes me repeat things several times. It is so frustrating at times.

Ed

Jeepster,

Gosh, as many times as I used "Dan" it may be easier to change his name than to correct that many times! So sorry.

I had a "button" installed and the orginal PEG tube taken out. I enjoyed it more because I didn't have the contraption hanging out all the time. It has a valve in it so it doesn't leak and you can put one of two different tubes in when you need to use it. I had a small diameter one I used for meds and a larger one for feedings.

My voice was hardly intelligible off and on and even still everyone makes me repeat things several times. It is so frustrating at times.

Ed

On our way to Madison this morning. Add to the voice, now he tells me he lost motion in his tongue 2 DAYS AGO! And the clear fluid he had been coughing up had some blood in it yesterday. We need prayers.
Karen

Karen
Special prayers for you, hang on in there girl
Sunshine... love and hugs
Helen