Sunday, June 25, 2006

[The key to a fun Saturday night in]

I woke up this morning in the middle of a vivid dream.
I was at a funeral. It was packed full of people, tons of flowers, and I was sitting next to two residents from Magee. It was inside a Catholic Church and everyone was dressed nicely. Except me. I was in a t-shirt, shorts and flip-flops, in the second row. I wasn't upset, though. Bitter, but not sad. The female priest (?#) was talking at length in flowery prose about whomever was deceased. She then recited a long list of medications... hydrocortisone, levoxyl, decadron, ddavp, heparin, provigil blah blah blah.... Who talks medications at a funeral? I started mocking the whole ordeal with the friends around me. My sister and I shared a glance and rolled our eyes.

I thought the funeral might be Mike's, but then I looked down past my sister, and there was someone sitting in a wheelchair. I think it was Mike. He wasn't doing great, but he wasn't the one in the casket up in he front of the church.

Yesterday wasn't a great day.
I brought Bax in to see Mike. Mike was out of it again. One day of "off" Mike can be a fluke, but two days = a pattern. So, I roll Bax down to the nurse's station and ask to see Mike's labs and his medication list. Sodium has been normal (140). I ask about the decadron dosage. Answer = 6 mg 2X/day. Six? Why six? I thought we realized that 6 was too low (See post from 6/17). So back on June 17th they upped it to 8 for the foreseeable future. Well, the reports show that they tried the taper - again - starting the evening of June 21 (Wednesday). It usually takes about 48 hours for Mike to downslide once they cut back the steroids - which explains why he looked like shit on Friday.

So, what exactly is the difference in Mike that tells me something's off?
He is literally unable to follow instructions. You ask him to move to the left and he can't. You ask him to look up and he can't. He can't process information. He's sleepy - emotionally flat. Takes a long time to respond. Sometimes can't respond at all. Will do things that don't make sense and doesn't know why he's doing them. It's heartbreaking to watch. Having been around it so much, I feel like I am better off leaving than sitting there watching him float around in this world of confusion.

So, yesterday, I talked to the resident on duty and explained my concern. Talked at length with Dr. Georgia about it last night, too (she's still on her rotation at Magee, and is very familiar with Mike's case, though he is not assigned to her). I realize that being on decadron at such a high dose for such a long time is weakening his adrenal system and that it makes Mike far more succeptible to other illnesses. But I also know that he has HUGE cysts in his head. We have our appt with Dr. Andrews in 4 days (Thurs). Hopefully he'll schedule the surgery for the week afterwards. Until those cysts are gone, Mike's brain is under pressure. There's no way around it. So, why the f%#k even bother with the taper now? I can't get my head around it.

My girls night with Susan made things much better. We ate yummy beef tenderloin made by one of my UDel colleagues, read tabloids, insulted the anorexic celebs, painted our toenails, put on skin-softening face-masks, ate brownie batter straight from the bowl and talked about sex. It was one of the most fun - and perhaps one of the hottest - nights I've had in ... months. Once again, thanks CSM.

This morning, NPR was doing another segment of its report on kids with cancer (like I need more health-related drama). Anyway, they ended today's segment with this song:

Sitting here in Limbo - Jimmy Cliff

Sitting here in Limbo
Waiting for the tide turn.
Yeah, now, sitting here in Limbo,

So many things I've got to learn.

Meanwhile, they're putting up a resistance,

But I know that my faith will lead me on.
Sitting here in Limbo
Waiting for the dice to roll.

Yeah, now, sitting here in Limbo,
Still got some time to search my soul.

Meanwhile, they're putting up a resistance,

But I know that my faith will lead me on.

I don't know where life will take me,

But I know where I have been.

I don't know what life will show me,

But I know what I have seen.

Tried my hand at love and friendship,

That is past and gone.

And now it's time to move along.

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