Since we got Marye home on Wednesday, she's been kind of up and down. The oral pain medication isn't quite as effective as the IV stuff and she's very, very fatigued. On Thursday, she was so tired and sleeping so hard that she was borderline non-responsive. So, I was talking to her oncologist who suggested we call hospice in. Before you get nervous about that, I found out that there is a big misconception about what hospice is for. People think that hospice is brought in during the final days or weeks of someone's life- and while they do provide that service, it's much more. Hospice is about quality of life care, and they will send a nurse in once a week and a nurse tech in three times a week to evaluate and help Marye (and me) getting cleaned up and comfortable. They manage her medications and (this is the big thing) act as the eyes and ears for the doctor. So when she does have a bad day (like Thursday), the nurse can evaluate her and give the doctor a good assessment.
In the meantime, when Marye gets strong enough to start chemotherapy again, hospice will stop. So, it's a good resource and just another tool to have in the bag. The oncologist said that statistically, people live longer when they have hospice because they are getting better care. So we'll run with this for a while.
Anyway, as I said, Marye is having ups and downs. She perks up for a few hours every day and I'm trying to manage her pain. She's also taking ritalin to give her a boost of energy. She is off the steroids since they actually weaken the immune system and we're still watching her for signs of infection. Overall, she's much more stable and comfortable now.
The hospice nurse will be here on Monday morning and we'll get her started. I'm looking forward to Marye getting some professional care at home to supplement what I'm doing for her. I'll post again on Monday to talk about how it goes. Have a good weekend.
-Chris
