The pills are the same. I’m back on Decadron and Keppra and so far I’ve been using my leftover stash from earlier this year. So I know the pills are the same.
What is not the same? Their effect on me. I’m not the loquacious, outgoing Decadron Girl. I think that’s the difference in dosage – at the start of my last round I was on as much as 30 mg a day – and one day I even got 100 mg. This time around, I take 2 mg in the morning and 2 mg in the evening. What that seems to yield is tightness in my chest, a powerfully loud yelling voice when my kids don’t snap to it, and a terror of going to sleep at night, since I know I’ll be wide awake by 5:30 a.m., then totally useless all morning.
So I have to discover new ways of coping, scheduling, avoiding, maneuvering. With any luck, things will go as planned and I’ll be back off the Decadron and the Keppra by December 7. With less luck, more of these things, new meds, more surgery, and a slow slide back into medical limbo.
I have no reason to think things will get bad again. But I watched my wedding video with the kids yesterday, because they wanted to see it, and I couldn’t believe how naïve that bride was. She was expecting that the tremendous luck that brought her to that happy occasion would follow her forever. Perhaps it has, perhaps it has, but now instead of Lady Luck, robed in satin, Mr. Luck who accompanies me now is a bit down at the mouth, foul-mouthed, not exactly bitter, but close to it.
I know – I’m lucky. The disease I have can strike those younger and more vigorous than me down like lightning. I’d love to return to who I was even a week ago – before the most recent scan, when I was all about progress and exerting control and getting things “back.” Maybe it is time at last to acknowledge there is no getting things back. Things can be different, not the same. Young A asked last night for the anti-bad dream spray again, after weeks of not needing it. I asked him why. He said, “The room is shaking again.” I suggested it was just footsteps from upstairs, or his brother in the top bunk. No, he was very clear. The room shakes.
This is, I think, his way of worrying about me. He’s tuned into me like a radio and when things start going badly, he knows. He’s my canary. He’s my sensor.
He was up again at 5:30 this morning, asking me to find his blankie and claiming he had already looked in “the gap,” the space between his bed and the wall that swallows all of his necessary items when it’s dark. There it was, right in the gap, as I predicted. I couldn’t even be angry at him for waking me, because I’d been awake already. I left the blankie on his pillow while he used the bathroom, then returned to my bed to toss and turn.