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Tired and frustrated again


kukla

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Hello Everyone - Seems like the time I spend on this site is talking about me and how scary this all is. But you all are the best to talk to....

Here is the latest on us. Good news - Glenn's brain CT was clear and his PET scan showed improvement in lung and bone cancer!

Glenn has been in the hospital for more than a month and went to a rehab hospital last week - which is a good thing. The docs think his low blood pressure is long term and possibly permanent damage from the cisplatin. He can't walk or stand up without passing out. He's basically had three stays in a regular acute care hospital and then this stay in the rehab hospital.

Second hospital stay he opted to have chemo again - alimta this time, which wasn't supposed to cause vomiting or diarrhea. I didn't want him to have it, wanted him to take a break but he decided to do it. His cancer so I feel like it's his decision. Well, we were back less than 24 hours later as he became very dehydrated with vomiting and diarhea.

While he was there, the bone pain from the neulasta and the neuropathy pain went thru the roof. So the doc put him on oxycontin and percocet. About 2 days in he started having problems - hallucinations, competely disoriented, etc. They cut back the dose but problems continued. So we discontinued it as the pain had lessened.

He was starting to come out of the fog when he went to the rehab hospital. The first hospital screwed up and put oxycontin on his transfer sheet. The new hospital gave it to him on Sunday and it was HORRIBLE! He was like an alzheimer's patient. Completely out of it. I stayed with him until 11 that night cuz he was such a handful for the nurses - trying to get out of bed, thinking he had other things to do, etc.

It is now a week later and he's almost back to normal. But he still gets confused, and now he is having trouble with something called word finding. They have ruled out stroke.

New docs think that it is confusion still from the med error, but now they are worried that the cancer may have moved to his brain. He can't have an MRI because of a metal rod in his leg that's over 40 years old. They can't see anything on the CT scan so there is nothing to treat. And he has been limited as to how much he can participate in his care cuz of the confusion.

If his problems continue they will do another CT scan next week.

I'm soooo not prepared for this - is anyone ever? I feel like we've gone from handling things to my being completed overwhelmed. I'm scared of what he will be like when he comes home and how well I can care for him when I'm home. I have aides lined up for now that we are paying out of pocket cuz he's not considered hospice - and nobody ever seems to talk about it but cancer is EXPENSIVE!

And I am sooo tired. I've been going to work then leaving early to go to the hospital, which is an hour away, spending 2-3 hours with Glenn, then coming home to have a late dinner with the kids. Glenn gets upset when I'm not there every day (I had a colonscopy on Wed. so I couldn't go for 2 days). I miss him terribly but I've got to figure out how to find some balance. At the same time, I feel so bad for him sitting in yet another hospital. I have friends who are going to visit him and our older son has lunch with him every day during the week cuz it's close to his office.

I think that I'm going to add "balance" to my list of dirty words this week! :o

Thanks everyone for being there. It's such a relief to be able to say all of this stuff in a safe place where people understand.

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I am so sorry that you and your family are going through this. I am not the caregiver, so don’t really know what it is like from that point of view, but I know how hard it was on my husband trying to take care of me and keep his business going at the same time, as well as taking over all the household chores that I could not do. Lung cancer is hard, but I really believe when all is said and done it is much harder on the caregiver than the patient. Glenn is so lucky to have you, but you do need to take care of yourself in order to be there for him, even if he doesn’t completely understand that at the moment.

I have had trouble with low blood pressure also, but after quite a few months it seems to be coming back up. I hope Glenn’s does as well.

I will be keeping all of you in my thoughts and prayers.

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