Brain cancer journey: Managing midnight fears

Last night I woke at one-eighteen. It’s not uncommon for me to wake in the night, and often I’m wakeful for a while, sorting through the day.

I can usually get back to sleep after slipping out of bed and padding to the kitchen window to look at the night sky. The view of the moon and stars soothe me. As I wrote in Walking Nature Home,

“No matter the chaos and uncertainty of my days, a look at the night sky and its familiar constellations is comforting. The same star patterns appear night after night and season after season. … Their seeming steadfastness reminds me that the universe is based on rhythms so grand and long laslting that my concerns diminish to become, if not trivial, certainly less urgent by comparison.”


Last night though, even the sight of the brilliant but dented orb of silver moon couldn’t soothe me back to sleep. I wasn’t just sorting through the day; I was afraid.

It had been a bad brain day. Richard got up a beat slow, and over the course of the day things got slightly but definitely worse, trigging watchfulness about whether the fluid pressure in his brain was building beyond the “monitor-closely” level we live with to the “danger-is-immenent” level that may call for a race to get him to the hospital before even his superman-strength spirit cannot keep him from fading.

Since we can’t just check the fluid levels in his brain with a dipstick, much less peer inside his skull to see if his right temporal lobe is bleeding again or the fluid accumulation has somehow worsened, we watch for a set of fairly crude markers: headaches that persist, mental confusion, deterioration in his coordination or balance, sleepiness.

Yesterday he hit each one, albeit just barely. He reported his first headache since the brain-scrubbing surgery just over three weeks ago. It only ranked a 1 or 2 on the 1-is-mildest-to-10-is-hellacious scale, but any headache that lasts more than an hour is cause for concern here. He had some minor mental confusion–so minor I can’t remember the details; his juggling, which he practices every day as a measure of brain recovery, was noticeably less adept. And he was sleepy: he took a nap and slept hard in the late afternoon, plus we went to bed early.


Even though none of the signs were serious individually, the combination was scary, reminding me of the days leading up to his last two fluid-accumulation crises, both requiring terrifying last-minute trips over the mountains and culuminating in lengthy hospital stays.

Which is why I woke in the wee hours this morning and began going through my mental checklist of things I would need to take care of to prepare to take him to the VA Hospital.

I thought about work deadlines and commitments, and how to postpone or cover them. I thought about the kitchen garden and our indoor seed-starts, and made a mental note about who to ask to handle watering. I checked my mental calendar for our guest cottage, and realized I would need to get someone to clean there…

I ended up laying awake for a couple of hours, reviewing what is going on in our lives, making sure I was as prepared as possible to drop everything, lock up the house, and race over the mountains to the VA Hospital, not knowing when we’d be back. Sometime after three-fifteen, I dropped off to sleep again, oddly comforted that I was ready for the just-in-case scenario I feared, but hoped fervently wouldn’t happen.

And this morning, after the alarm jerked me awake at quarter to six, Richard got up himself again. He was alert, his head didn’t ache, his mind was clear, and he said he felt “good.” Wow! It’s been a good brain day all around–he even found his juggling rhythm a time or two.

What happened yesterday? We’ll probably never know.

But it reminded me of how tenuous my balance is these days, and how easily I snap right back into crisis mode. That’s no surprise given the traumas of the past several months. Still, I’d like to be steadier. So I’m going to work on finding my feet, and learning another facet of how to relax and appreciate the moment–even if the moment is being awake in the middle of the night, watching the silvery and dented moon appear to sail across the heavens, just as it does day after day, season after season.


I’m grateful for the chance to keep practicing how to live mindfully and gracefully, or as Richard likes to say, with an attitude of celebration and gratitude. Amen.