Tuesday, September 26, 2006

Random Babbling

I've heard from many friends, both in comments here and otherwise, about not sacrificing my own care to care for Jim. Thank you for your concern, and be assured that I am trying to do that. I have a serious disease, but right now Jim's medical condition is more serious than mine. I have only a few more steps in my journey, unless the train jumps the rails somewhere and metastatic disease becomes part of the picture.

Mary my neighbor nurse, who is a neighbor for only 2 more days before she moves back to Maine/New Hampshire, suggested that Jim's encepalopathy/dementia might be the result of something other than his liver disease. She suggested that he might have experienced a stroke. I wasn't sure how to react to that, as I have always thought of a stroke as also involving one-sided physical weakness. Mary suggested that I ask one of Jim's DRs about it, and that a brain MRI might be needed to see whether a stroke is the cause of this problem.

I got bold today, and left Jim alone twice for about an hour each time when I went first to the grocery, and then to Dr. Boob's office to pick up a scrip for Percocet and to the pharmacy to have it filled. I'm still having pain in the drainage area of the mastectomy. The only problem with leaving Jim by himself was that he took naps, allowing him to get in front of me on the sleep meter. Right now he's sleeping (snoring in fact) and I'm here writing. I'm up because he woke me 4 times in 3 hours to go to the bathroom or move from the bed to the couch. Woken enough times, I'm up for good. I told him that he's going to have to read rather than nap when I go out for chores.

Today we get a home health aide (HHA) at 8:30 and a physical therapist between 10 and 11. I am concerned about the HHA. She is a new employee with this home nursing company. An employee new to this type of gig combined with a client similarly new could be fraught with misunderstandings about what should/can be done. I'm also concerned about Jim's shower, which for me is the whole point of getting an aide. She will have to take him up 12 steps to get to a shower. He's barely walking across the room. Depending on the circumstances (how large and experienced she seems), I may ask her to give him a bed/couch bath, and maybe ask the agency for a different aide. I would love to have a big burly young man.

My head hair is starting to grow in. So many people told me tales of post-chemo hair being different in color/texture than it was before. Doesn't seem to be the case with me. Seems still to be straight, thin, and medium brown/grey. But it's only ~1/4 of an inch long. Maybe more length will show something different.

With returning head hair, other body hair also returns. It's been a nice 6 month respite from leg shaving. I will be avoiding underarm shaving for awhile because of the surgical scars/corded tendons in both armpits.

My mastectomy area continues to drain more fluid than "allowable" for the surgeons to remove the drainage tubing. This situation is annoying because I don't drain solely into the Jackson Pratt "grenade;" I also seep from the drainage site--alot. I don't wear a dressing over the wound because I can't reach there to apply bandages. Instead, I bought boy's cotton A-shirts, which I change 4-5 times a day as a dressing of sorts. Dr. Cutter thought the A-shirts were a grand idea.

1 comment:

Alice said...

Sorry things are so difficult right now. I hope it gets better. I do think there might be something more to Jim's problems also. Your hair will be in in no time. Sending love and hugs to you and Jim.

Love Alice