Since Saturday

i guess the last time i posted was saturday morning. Arlina slept until sunday evening, then woke up and was hungry. she had pretty good days monday and tuesday, but felt crappy today and slept a lot. it has been a roller coaster, and i am worn out.

i did do something that has made the long stretches a lot easier--i bought an ipod. it's pretty cool. i went home the other day while arlina's sister sat with her, and downloaded a bunch of cd's into it. somebody said that it would be a refuge for me, and they were right.

i still walk when i can, and take pictures. I bring them back and show them to her.

this is much too difficult for words

more words than last time

Someone who read last night's post asked if we had hospice available to us, and I realized I didn't mention that Arlina is still in the hospital. She had the temporary epidural catheter placed last week, and did ok initially. They were able to take her off the IV narcotics completely, and her pain was well controlled.

On friday, she felt sick after lunch, and they gave her some ativan, which made her nod off. From that point, she slept continuously for the next 2 1/2 days. She would barely arouse, although she would get up to pee about every 8 hour so, then go back to sleep. she didn't eat anything during this time.

It was scary. At first I thought it was just a reaction to being off narcotics--sleeping it off. But by Sunday, I was afraid this was going to be it. I called a bunch of her friends and prepared them. I sat at her bedside and thought about all things I still wanted to say to her.

Sunday afternoon she woke up and had something to eat. She had a good night. She was fully awake, and even took a walk. Monday was better--she was more her old self.

Monday evening we sat together at the bedside and talked. I told her the things I wanted to tell her. It was good. We cried together. We wrote her obituary. We are, I think, ready.

Tuesday morning she had a sharp increase in her pain over a period of three hours, to the point where it was almost unbearable. The day nurse discovered that the night nurse, when she had changed the pain control syringe, had forgotten to push "start". She told me right away--I was actually relieved that it was that, and not something going going on inside Arlina.

They got the pain back under control, but she has felt crappy since then--more nausea, and a feeling of fullness. It is because of the liver--it is so big now. Yesterday she was very tired, and slept most of the day.

We want to come home. The pain control doctor is planning to put the permanent catheter in on Friday, which is what we need to be able to get out of there. It probably won't be until Monday, though, because we will need to have support available. She will probably go home under hospice care.

I am at the point where I can really only focus on her, and everything else seems like background. If I don't write for a while, that is why. I will let you know when things change. Thank you for your continued support--you all are so wonderful.

( a picture )