Dailies

First, a memory: in 1989, Gil and my mom and David and I took a summer’s driving trip through the American Southwest. All of us lived on academic calendars, so we had three months to putz around the country and learn that a single VW Golf was starting to be not quite enough room for a family of four. When not driving, however, we hiked into the Rockies, stayed at cheapo campsites, danced around the Four Corners border crossing between Arizona, New Mexico, Utah and Colorado … and went to the Grand Canyon.

The thing to understand about this is that Gil has always been petrified of heights and falling. He’s so nervous about it that when we got to one side of the canyon, he insisted that David and I shouldn’t walk to the edge, but rather Army-crawl up to it on our bellies, peer over, and then Army-crawl back. (After we’d spent a few days sightseeing and hiking down into the thing, Gil loosened up a bit about the edge; the three of us eventually held a pissing contest to see who could pee farthest into the canion … but that’s a story for another time.)

The point is, what Gil insisted we initially do with that cliff’s edge, Gil did at death’s Grand Canyon, this week. Army-crawled up to it on his hands and knees, peered over, and slowly backed away, dirty and covered with gravel. It really looked like he wasn’t going to survive last week, but survive he has. It’s no sure thing, but if he continues progressing as he has been, the docs say, it’s possible he could get another year: not exactly what we were expecting last week. Army-crawling back from the brink, indeed.
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That’s what a friend of the family said to my mom and I today, in the hospital. My stepfather, Gil, looks very much like he’s in the end game with his most recent cancer, multiple myeloma. (“End game” may not be the right analogy; it might be “overtime” or “extra innings” at this point, but since Gil is the person I’d generally call up to ask about my naive and totally wrong sports analogies, I’m kinda out of luck just at the moment.)

I went to see him today, and got a few good heartfelt interactions. Most of the time he’s hovering just below the surface of consciousness, bobbing up for brief periods when we rub his shoulders or play him some favorite music. He knows where he is and what’s going on, and while he’s uncomfortable, he says he’s not actually in pain. He can’t have many visitors, since his immune system is shot. His obvious pleasure in seeing people and hearing especially familiar CD tracks more than compensates for his being unable to finish sentences longer than 3-4 words. He drifts off mid-phrase, not really asleep, but definitely not awake. Most of what he does talk about are good things: love, family trips, memories and pleasures.

Even in his current state, he’s socializing with the nursing staff, recommending dance albums, and still charming everyone around him. In other words, he’s being exactly who he’s been for as long as I’ve known him.

He’s got both a raging cancer and a whopping big dose of chemo burning through him, nullifying what tatters remain of his immune system and keeping his blood components in the “terrible” range. The palliative care team is talking about hospice and seems clear that he’s winding down. His oncologist, who’s known him longer, is worried, but says there *could* be a very slim chance he’ll survive the chemo (and bacterial infections) long enough to see the cancer slowed down a bit … but it’s a very, very slim shot. His family is converging, and we’re all just enjoying what we can of the hours and days we’ve got with him right now. That’s the attitude I learned from him, after all.

We’ll have a better sense of any future trajectory for him if he survives through the weekend. I find myself reacting much the same way I did when I was at my low point with the GBS, and simply not thinking about the long term. The short term is almost too much to handle as it is.

Last night, unprompted, Piper started reeling off some stories of her own.  I grabbed for my recorder and got several of them down. Recurring themes: a little girl going to bed, snuggling with her polar bear, curtain rods, drinking juice.

Piper Tells a Story: 1 (01:57)

Piper Tells a Story: 2 (01:09)

Phrases that I’ll need to ask Piper about more later: “she munched a quarter and it bing-ding-dinged,” “in pajamas like a pea,” “had her juice on her little … painted … um … orangey table.”

Sometimes unremarkable times are actually the ones I find myself wanting to remember.

I picked P up from her day care late this afternoon, whistling as I walk in the door. Any time I walk into a space in which Kate or Piper can hear me, I give the same little three note whistle I’ve used for years to announce myself — tonic, dominant, major-third. Piper hears this and comes excitedly running out to meet me.  She pauses for a second, looking past me for Kate before I explain that her mom’s at work tonight, and that we’ll be having dinner as a twosome. She’s psyched to head out, though, and so I gather the day’s masterpieces (unfinished raviolis in her lunch bag and a scrawled-on picture of a squirrel, HELLO JACKSON POLLACK) and bundle her into her purple coat.  She says goodbye to Emily, the afternoon caretaker, with a cheery “Shabbat Shalom!” — I’m guessing Piper is likely the only kid being raised by two Quaker parents who knows to say that on Fridays, but when you’re attending a day care named Gan HaYeled, this is perhaps unsurprising, and totally charming — and we run out to the car with a rain squall bearing down on us overhead.

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Warning: tangential discussion of toddler diapers below.

Context: I frequently ask Piper, “So, what’s your diaper situation?” To which she always invariably replies, “Good!” The verbal response is not the one I’m watching; if she sidles away while saying “Good!” than she’s trying to get out of smelling range, which indicates un petit falsehood as to her pants’ status. If she stays put, she’s most likely telling the truth.

However, this is not actually a diaper story. This morning, I took the bag out of our kitchen trashcan. While knotting the damn eco-friendly trash bag, I noticed a dead fly down in the bottom of the can, and figured I would swab out the whole thing when I came back from taking the bag out.  As I walked towards the back door, though, Piper walked over and peered down into the bottom of the can, and then quizzically looked at me. “What’s the bug situation?”

Late update: tonight we got asked about “the music situation,” during dinner.  So I think we officially have a catchphrase of the week.