1.3.11

AYNSLEY:
I don't know who sent us blueberry muffins this morning, but you saved the day. First of all, they were delivered around 8:30am, which woke us up in time to find out that radiation was scheduled for 9:15am. Knowing what happens when we're rushed before radiation, I immediately told the nurse we needed a pre-funk pain med cocktail. We also needed breakfast. Hallelujah again for the blueberry muffins-Mom ate half of one before gulping down her pills and heading down for radiation. Open call to the Blueberry Muffin Hero: who are you?? Thank you!

I know some of you are wondering how the slumber party went. I woke up at 1am when Mom's infusion bag needed to be changed, but luckily she slept through it. At 2:30am, she woke me up to help her pee. But she's so used to having my dad there, so was calling "Bob! Bob!" and it took me awhile to wake up and respond. I felt horrible. She was fine, though, and said she wasn't waiting long. At 5:15, we were woken up for vital signs, medication and a blood draw for the lab. The lab draw was actually the first thing at 5:15, then vitals, then meds. At about 5:45, another tech came in telling us they needed a lab draw and I said they'd already done one, please go away. This little waking period was the highlight of the night. Mom was alert and talking about her dreams (being in the mountains with a bunch of little kids) and singing the song my dad made up for me when I was born. I think it was the first time since then that we'd spent the night together in the hospital. We both fell asleep again until the muffins arrived.

My dad is spending the night tonight again, and we made arrangements with the night nurse to only come in if summoned-there should be NO 1am infusion change (we changed the bag at 10pm to make sure), there won't be any 5am hubbub unless Mom causes it. Hopefully they will both get a good night's sleep.

Today was hard. Mom was exhausted following radiation and didn't get her groove back until about 9pm. We had a frustrating meeting with the oncologist, who couldn't really tell us anything. We seem to get a lot of "maybe" from our doctors. We had an ultrasound that should have taken 20 minutes take two hours-that's two hours off her pain medication, with cold goo on her arm and neck-because the technician was clearly inept. I was so angry and so helpless.

Last night as I was telling my mom the agenda for today, I said she had radiation and she groaned. I reminded her that if she EVER doesn't want to go, if she needs a break, if she wants to stop, tell any one of us and we'll stop. We'll take a day off, a week, whatever she needs and wants. She just shook her head and said this is what she needs to do to get back to normal life. All she wants is to go back to the mundane and it breaks my heart that I can't get her there. In the course of three weeks, she's gone from a vibrant, strong, fit and healthy woman to someone who can't see and can't stand. Anyone in their right mind would be devastated. I am devastated. And she sat with friends tonight and planned her birthday dinner (January 30th, folks!), when I'll be back in town and we'll go for Italian. To bear witness to such hope is an amazing gift.