Everything I thought I knew that I didn't know

D. was here this weekend with R. It was only for Friday night, but I think they felt like they had a mini-vacation. No leaky roof like at home and no half-crazy 95 year-old sort of stepfather screaming at them. My daughter H. was away at a friends so D. and R. got her room with its super comfy bed all to themselves. They said it was the best night's sleep they'd had in a long time.

I learned a lot in 24 hours about what D. has to do to monitor her disease, and as time passes it will probably get more labor intensive in that regard. I also learned I had some things wrong.

It actually wasn't an infection from the biopsy of her adrenal glands that put her in the ICU about a week ago. She did have an infection at the site of her lung biopsy but she also had pneumonia and that was what was causing her difficulty and pain in breathing. The docs told her pneumonia is infamous for "hiding" behind tumors in the lung.

I also learned D. isn't ready emotionally to part with her super long hair. I can relate. I used my long hair as a security blanket of sorts for many years, but got over it in my late 20s. D's hair has already started to fall out a bit and since we weren't able to get an appointment to get a wig fitted this Friday I offered again to take her to get a haircut. I could tell this was painful for her to discuss. No way around it...it sucks that her hair is going to fall out; it's a matter of whether she wants long, long strands of hair to fall out or shoulder length pieces. But bottom line, it's her decision to make.

We're trying again to get her fitted for a wig this Friday or Saturday. Once we have the wig, D. just wants to have her head shaved. Turns out she doesn't want to deal with it falling out at all.

I learned that when D. doesn't feel like eating, the only thing she really wants is white cheddar Cheezits, and that she's mainly drinking Chocolate Boost to keep her caloric intake up. I've also learned WalMart is a good place to get both, if you don't mind your sick sister worrying about how much it's costing you.

D. has to keep a written record of how much medication she takes and when and it looks like a lot and often. She also has a cuff and blood pressure monitor which she uses several times a day. She lost the back somewhere along the way so the batteries have a tendency to fall out but she tells me her doctor said it's an older but very accurate model.

I've learned D. likes hi-test coffee, not decaf like me. She drank two cups Saturday morning and later when she took her blood pressure it was very high and R. felt like he needed to get her home immediately. They were packed and out the door in about 20 minutes. I don't know if the coffee contributed to the high blood pressure or if it was that she got upset talking about her "boys"; her two grown sons and R.'s son she considers one of her own.

My brother S. was headed to her house today to get her set up with a computer, internet access and an email account since she's a technology neophyte. He couldn't get an old computer he had to work correctly so he was going to buy her an inexpensive laptop. Better for her I think because she can use it from bed, but of course it was one more thing for her to worry about how much someone was spending.

The main thing I've learned is D. is going to worry, she's going to feel guilty and she's going to feel sad and the best thing any of us can to is to be there to support her. That last part, I already knew.

Next post: Mission Accomplished