Husband back in hospital
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Turns out that chemo can cause this fungus but it normally surfaces through sores in your mouth. So the jerks never considered it when his pain increased. Pisses me off! So it festered for months into raw ulcery lining in his pipes and trying to push food through them. Now they said it was so bad that they have to keep him very drugged. Last night he was hallucinating, thought he was in a fraternity house and wanted to know what I was gonna do with all the guitars. He hears voices and it is like he is on some drug induced fantasy ride. Frustrating for those of us visiting but we have to keep telling him not to worry about it , and he will get better soon. Doc said to deal with this cause they have to keep him that medicated. Oh well. he is better in the mornings and antibiotics have been going in for 4 days now, need to go in 10 days. he had a shower too so that made him feel better.
Isisman…..The trick is to find the exact balance of controlling the pain and keeping Tad coherent. In one of your previous postings you had mentioned that he was feeling better therefore, I am hoping for the antibiotics to be working well enough to allow for a reduction in pain medication. I am crossing my fingers.
One day you will have a chance to look back at this stressful time and wonder how you possibly could have managed. As Darla and LD have mentioned somewhere a little bit of time needs to be carved out just for you.
Best wishes,
MarionIsisman,
I am sorry to hear of your latest trials with this awful sickness. I, too, agree with what every one else has told you. I know full well how hard it is on the caregiver to watch your loved one suffer and feel totally helpless. The only help I can offer is to suggest(and they may already be doing it) is to try delauded (spelling?) for his pain. That was the only thing that helped make my husband’s pain bearable, morphine and even oxicodine didn’t help. It is a pretty heavy duty pain killer, I am told. My prayers are with you as are the parayers of many others.
LDlsisman,
I have been where you are now and yes, all you can do is keep on doing without thinking too much about it. There were days I didn’t think I could go on, but I did. As you said, one day at a time, sometimes one moment at a time. Try to carve out a little time for you. You need all the strength and support you can get to get you through this and to be able to be strong and to be there for Tad. Sometimes it may only be a few minutes, but you need to take a deep breath and regroup now & again. Take care and keep us posted as to how you are both doing. I will be hoping for some improvement in the near future.
Darla
The saga continues. Last night he was so dopey and drugged that he couldn’t put a sentence together. Not 3 works without drifing off and forgetting he was even saying anything. he would reach for a drink in slow motion and start to twist cap off and fall asleep. OMG I could not communicate with him, he was NOT THERE !!! I told the nurses he is so damed drugged he can’t even talk. I told them to reduce his xanax to .50 3xday from .75 3xday. They agreed. I tired to tell Tad and he couldn’t comprehend. Then kept calling me after I left to say something is going on , they are changing things, we need to figure this out. It was like he had lost his mind. Well I got them to decrease xanax a little to help but Doc said he is very very sick and all drugs have unfortunatley taken over his mind and we just have to hang in there. Doc asked who is best friend was and called him and personally told him to visit often and that Tad needs it. Company frequently, then he will nap in between and not think so much. Then I had a sick kid to take to doctor, and one to school, then leave one home in bed, go to work, figure out who can visit Tad off and on when I can’t, etc etc. Gotta jog at lunch, can’t get enough work done and boss NEEDS to see accomplishments, then back to hospital then home to kids and homework. One day at a time, I just go through the moves and don’t harp on thinking about it and I get through it, but if I sit back and just take in the whole picture and the business, I get very upset and emotional and fall apart. So, one day at a time and just move through the schedule!!! Good thing I am a workhorse and a strong , multitasker.
Hi Isisman, boy do I know where you are coming from! Glad to see he feels a little improvement. Lately I feel like we have so little time left. Sometimes I too want to toss in the towel and the whole rubber ducky. Not because I am tired but because I don’t want to see Teddy suffer. Like today. I called the ONC before hours and left a message that he had 1 pain pill left from our trip. Here it is 6 hours later, 3 calls and they still have not ordered the RX. And this is the top Oncology office in the city???? their excuse? Mondays are so busy with so many calls from the weekend. I bet they were not all asking for pain pills! I also understand your feeling that “fungus” is not the right diagnosis. When I had doubts about the “final prognosis in June” I went over his PET Scan report like 10 times and the doctors were right. I thik we just get so frustrated. Trying so hard to be up as I don’t want to waste what ever time we have left being a downer. Those are not the memories I want. Stay strong, sounds like you might be on the road up again!
no you don’t have to make him eat. He actually has been eating, but not all hospital food looks like you want to eat it. if youknow what I mean. I will be honest, he has been in devastating pain for well over a month now, and to think that some esophogus deal is causing it, I’m sorry, I just don’t buy it. But he is on antibiotics and I always thought maybe he had an infection, so we shall see. He said he thinks it is gradually getting better. We shall see. Right now he just misses sitting and smoking a fine cigar. Wednesday wont’ come quick enough . haha
Well I’ll be a monkeys uncle. I have never heard of a fungus causing such problems. We learn something new everyday. Thanks for sharing.
Glad his medications are back on schedule and he is getting better. Hopefully that pain is getting under control. Are you going to have to sit on him to make him eat all his meals? My nurses used to guilt me by saying “Your husband would want you to eat. Take a couple of bites for him…if not I will tell on you”
Hope he is homw soon.
KRis
Update. They found that my husband has some fungus in his esophogus! Yuck, that they said that is what is causing his pain. I can’t believe it, it is low stomach area pain but guess your esophogus goes all the way down. Also he is on morphine pump that started at 1 unit of morphine and he can push the boulus to get up to 3 unites in an hour, it was increased due to pain. They wanted to get it to a level where if he felt he was at pain 9 (scale 1-10) he should get morphine and pain should drop to a 3. Well he is now getting 5 units of morphine an hour and can get up to 7 an hour! Wow, he can’t carry a conversation and is so out of it. I hate how he looks, acts, everything. But they have him on antibiotics and says it will be 10 days to fix the fungus. You never know he may get out of pain!!! He must eat all meals for two days before they will let him leave the hospital. This is amusing. before his test, one doc said he had air in his lung, the other said he had 1/2 a collapsed lung, then regarding the ERCP test, one said they were optimistic to find something and the other said they didn’t think they woudl find anything. How frustrating!!!! Oh and they were giving him a third of his anxiety rx AS NEEDED so he was getting attacks and then it woudl be too late. They couldn’t bring him anything or help him. He suffered for an hour twice. I got in their face. They were supposed to give him 3 times the amount (.75 not .25) and 3 times a day not AS NEEDED. Now he is on a schedule and having no attacks. Sorry, hospitals are so incapable and ineffcient and I have nothing nice to say except that the staff has been nice and it is the best hospital in our area. He comes home Wed, lets hope it is good.
Glad to hear the good news about the scan. Hope they figure out the infection or whatever is causing problems.
Kris
Hi Isisman,
That is good to hear that you both got some good news today from the scan and you certainly deserve that. Hopefully the ercp will continue to give you both some more good news.
Best wishes to you and your husband,
Gavin
Great Isisman…things are moving in the right direction. Crossing my fingers for some revelation during the ERCP.
Best wishes,
MarionMy husbands special catscan showed nodes in better shape than before the first Gemzar dose and no tumor markers. What they think is some sort of infection or something that they can’t see. They will schedule an ERCP to explore and view what is going on in there. So we got some good news and waiting on the rest.
Isisman,
I am so sorry for what you are having to deal with. I can’t really know what you are going through but I will continue to pray for you and your family.Grace and Peace –
bob
lsisman,
I too agree with everything that has been said. Hang in there and try to take a little time out for you. My experiences were so similar to what you two are going through and you have been dealing with it for a lot longer than I did, so I do know what you are going through and how you are feeling. Stick with us, we are all here for you when you need us.
Love & Hugs,
Darla
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