cru·ci·ble
ˈkro͞osəb(ə)l/ noun
a ceramic or metal container in which metals or other substances may be melted or subjected to very high temperatures.
a place or occasion of severe test or trial. "the crucible of combat"
a place or situation in which different elements interact to produce something new. "the crucible of the new Romantic movement"
"I should be a postage stamp, because that's the only way I'll ever get licked. I'm beautiful. I'm fast. I'm so mean I make medicine sick. I can't possibly be beat."
― Muhammad Ali
“Was mich nicht umbringt macht mich stärker."
― “Maxims and Arrows” by Friedrich Nietzsche
Twilight of the the Idols (1888)
Yesterday was a down day. Or was it the day before? The passage of time is elusive here in the cancer ward. His counts were down, my spirits down, the chances of an early discharge down. I was feeling increasingly sick myself, increasingly rundown. The night itself had been straight from hell - he woke up at 2:05am, 3:10am, 4:08am, desperate each hour for more food, more water, more love, more soothing, and then at 5:20am for good. At that point I relinquished the fight for more sleep and got up for good as well, my back in spasms from the hospital bed, my eyes feeling like the barely opened red slits of a newborn baby mouse, exhausted beyond belief. I gave him the iPad so that I could go find the nurse to change his soaked sheets, still unclear as to why yet another different night nurse would have pumped him full of maximum fluids overnight when I thought we were over that hump. Furious at them for not changing his diaper at each inevitable nighttime interruption to take his vital signs as they are supposed to do, as I have to repeat that instruction to each new person every night when I know the translations will not occur, that details will get missed, the continuity will be broken. The hospital game of Operator no better than the layman's garbled message at the end of the chain. And yet, my empathy amidst the sleep-deprived fury: they so often have more urgent things to attend to in the middle of an understaffed night than diapers full to bursting.
As I feared, the doctors' bullish projections that James's counts would continue to rise, that a weekend discharge was imminent, proved overly optimistic. He is making his own platelets again, bravo (still true)! A few days ago the rising immune system ANC numbers 200 one day, 240 the next, the Attendings saying these are really good, better than expected, we should train you up get you ready to take him at least to his grandparents' home locally so he can continue the chemo outpatient until we can give you the thumbs up to fly home, maybe even before Day 29. My initial terror at having to manage his care without their constant input, data, interventions ... and then my growing attachment to that idea, to having him at Charlie's childhood home again where we began our summer visit east, recapturing some of what felt like the summer sojourn cut short even if a dose of heparin for him and a clean swab of his IV line was required in parallel with a glass of Chardonnay and a brie-topped salted cracker for me. A leisurely walk to the beach, a real bed for us all. And then the next day, rather than the new "Plan" continuing to evolve, gain momentum - the numbers down again, to 100, 110, then 80. The hemming and hawing of the team, saying discharge now is less likely but it could still happen, and my own withdrawal from even inquiring anymore. Again - there are no certain answers here.
A wise friend told me even as the numbers were up to "plan, but don't project." How right she was. I thought I was doing a good job of that, and then with each lower number reported, my bubble slowly bursting. I didn't realize how much I had counted on his upward progress continuing. Grinning inwardly at how impressed these experts were initially, taking his progress for granted as his proud mother, thinking inside ... "Well, of course! He's the undeniably cute and intense James Knox Everett! He's a fighter! Haven't you met his father, that formative specimen of a human being? His grandparents, and their grit, their stoic strength in the face of adversity?" James couldn’t have inherited more strength, fortitude, and that intense resolve to push himself to the limits of his capacity and beyond - and to look pretty damn good while doing so (sorry, Charlie, I know you are mortified right now if you are even reading these). And ... with the steroids at full burst, James is starting to look more and more like a mini-Mike Tyson - how could he not be showing these cancer cells whose boss? And with the great care he's getting, the "A-team" as it were, of course .... those counts will keep going up! No sweat!
But alas - no, leukemic cancer cells are wily ones, the actuality of "progress" not dependent on the hard and fast data of rising numbers. I thought numbers and data could approximate truth, lead to a clear reckoning. But my aforementioned thoughts on navigating in ambiguity are proving too true at the moment. I had tried not to "project" ... and yet the solemn news and the fleeting vision I had had of this Labor Day weekend, the vestiges of a summer holiday we could redeem as a family - relinquishing that left me depressed and depleted. And even without that "loss" of an idea, I was missing Grace more than ever, missing life back home, missing and mourning the cushion of normalcy and rhythm.
And then I saw a flowered box in the corner which I hadn't yet opened among the rest of the packages here in his room, gifts to him from our growing village that we are titrating, "dosing" for when he needs a boost ... I let him iPad it out some more and went to the box and opened it. My friends back at home - the "Momfia" which I will devote another post to later as a truly powerful Force in this long battle - but suffice it to say that box contained humor, support, love, warmth, creature comforts, and exactly the right words to help me keep going here. Baked goods, notes, warm clothing, a shot of tequila and "Fireball" which luckily I didn't feel the need to immediately down given that the sun had only just come up. And again, that strong reminder that we are loved, we will get through this, we will get "home" ... both physically and metaphorically.
Amdist the amibiguity, the routine and even rituals that have helped us get through these dog days at the hospital - brushing teeth twice a day with a particular rhythm and pace, washing hands as often as we can to the tune of "1-2-3-4 ... Stayin' Alive, Stayin' Alive" for two chorus lines - an old trick I practiced with him long before this diagnosis and morbidly ironic now, but it happens to be the same tune residents learn when they are practicing the pulsing rhythm of CPR. Charlie told me that long ago during his own residency, and swaying our hips and singing the song to the beat made James actually lather long enough to give the germs a run for their money. Other rituals that have kept me sane in the face of unpredictability: my wise and brilliant friend Erin reminding me to do sun salutations every morning, to give myself that gift of physical meditation and ritual. The color-coded, shape-sorted Lego building piles that James instructs me to create before we start to build in earnest. His playful frustration when we were missing a piece, saying with his mona lisa grin "oh NO, mommy, this is terrible! so bad! so bad! We'll never finish!" (smirk) and then in sing-song, "Everything's going to be fine, dah-dah-dah, even if there’s a piece lost under your booty..." and us both bursting into hysterics. And then him fixing his eyes on me and saying "Don't worry, mommy. We never give up, remember?" What?? Did I tell you that once upon a time, little man? Did Daddy? Good on you - I needed the reminder. Okay, my little Winston Churchill, my Muhammad Ali. Let's press on. And despite any minor setbacks, the noise of the numbers, still the good news abounds - platelets keep rising, Daddy and Grace and Nonnie arrived last night, the family is together again even if the setting is different than my projections. We move forward.
I talk in my leadership development field all the time about Crucible moments. Challenging events in your life, a la Bill George, that help you figure out who you are and what you truly care about - often catalyzed by difficult times that strip you to your core, melt you down so you rebuild in the weakened spots to be stronger and wiser than before, and to know Who You Are on a whole different level. Certainly befitting at the moment as each day with James is its own crucible, this odyssey as a whole likely (hopefully) one of the most difficult we will ever face.
All I know at this moment? Nietzsche had better be &%$#&@ right.
Comments