Party Girl (D+15)

"There was never a child so lovely but his mother was glad to get him to sleep." - Ralph Waldo Emerson

Ups and downs. It seems this process isn't a steady climb but a frustrating and exhausting series of peaks and valleys.

The 4th of July came around and it seemed like things were looking up. Elise's ANC was up to 600 (which is unbelievable, and was ultimately short lived) and she seemed to be feeling pretty good. She'd gotten some sleep the night before and took a nap during the day. Her pain level seemed to be dropping and the mucositis seems to be easing (ask me the spitoon joke sometime - it was unfortunately appropriate but made Becky and I laugh and gag for a while).

Of course Becky and I have cautioned ourselves that there will be good days and bad.

So the night of the 4th was pretty tough. Things were going along OK and then she started to have GI problems. These led to another all painful almost all nighter. I was delirious by about 4:30AM and couldn't keep track of things, so I can only imagine what Elise was feeling like. She did managed to get a couple hours of sleep before the sun came up.

She's dealing with a situation like what happens the day after eating an entire jar or habanaro peppers. Only image that happening when you're already raw from a week of diarrhea. Sorry if this is too graphic, but it's about the best description I can think of. It didn't help that the worst of it happened when they'd disconnected her pain meds to give her intraveneous feeding (she has too many things hooked up and so they need to swap out what she'd getting at any given time).

Needless to say it was a long night and even though we were awake we missed the fireworks.

During the day she got some sleep and they finally convinced her to try an experimental treatment. It's something they've used for people with ulcers that can't handle the typical treatments. The GI Dr said it was "like clay" that coats the insides. They've been thinking about how to deliver it for days and finally came up with a solution. I wasn't there (it's my turn to sleep tonight) but Becky said it's gone well. Becky said Elise had reported her pain level as a 1, which is almost incomprehensible given the past week or so. So I'm hoping she gets some sleep tonight. She needs it.

If we can get past the GI issues things are looking pretty good. Elise's blood counts are rising. And she hasn't lost as much weight as I would have guessed. So if she can string together several good days then they might start talking about letting her out of isolation.

There are definitely good signs even on the worst of days. For example, she hasn't run a fever in a couple days. And the few oral meds she has to take (most are available as IV) are going down without tears now. So we remain very hopeful.

Most importantly for me, she's been able to get some sleep. The lack of sleep has been hard for Becky and I and we've gotten to switch off, I really can't even imagine Elise's state of mind.