I was totally disoriented in time. Clocks had become irrelevant. Time was a wisp of air when the door opened; a brush against the ankles. A whisper, half overheard, out in the hall. Hospitals reminded me of casinos, sealed worlds devoid of time. Fall wouldn’t come sweeping down the hall, nor spring, nor summer, nor winter. The hospital was evenly heated, brightly lit, austerely colored, 365 days a year, 24 hours a day. Without a single sign of outside life. Which seemed odd for a place whose primary purpose was restoring life.
Day became night, became day. It didn’t matter what hour you ate breakfast or brushed your teeth or combed your hair or watched America’s Funniest Home Videos. It barely mattered if you did these things. Time was something we had to slog through to reach the other side.
I didn’t ask Ramya what she meant, day three. I figured we’d find out soon enough.
42
As soon as we meet another family, the first question is, “What Day are you on?” Transplant, we find out, does have a clock. A very particular clock.
Each transplant day is assigned a number. The countdown begins with Day ?10 and continues to Day 100, a mythical day. On Day 100 you’re “done.” Every day prior to transplant is expressed negatively. Every day after transplant, positively. Days ?10 to ?1 are spent ingesting the chemo drugs. This is time before time. Day 0 is Transplant Day, ground zero, when patients reset their clock. Are made new. After transplant, time is expressed once more in positive numbers because each day forward is a gift. A bonus. These are days your child might not have been allotted. Days received as grace.
Days 1 to 10, we are told, are when patients typically begin to feel the effects of the chemo. And Days 10 to 20, when the drugs hit the liver hardest, are the most dangerous period. Especially for Gracie.
By Day 40 the hope is to be discharged from the hospital and to be treated as an outpatient in Duke’s clinic until ready to return home—on Day 100. It’s a blueprint, a plan. There is no guarantee that any patient will follow it precisely or even loosely, but I’m happy to have goals, markers toward which we load our bow.
In a spiral-bound notebook I make a vertical list in my smallest, neatest print beginning with Day ?10, traveling past Day 0 (Transplant Day) and ending with Day 100. One hundred and eleven days. Doable. Beside each day I intend to take notes.
Once, before I had kids, let alone a sick kid, I read the Lorrie Moore story “People Like That Are the Only People Here,” in which a husband advises his writer wife to “take notes” on their son’s treatment for cancer. How could you take notes, I’d thought. At a time like that. Now I think, what the hell else can you do?
DAY ?10
They give her the first dose of chemo. Brian holds my hand as they load it into the dispenser on Tough Guy. We can’t undo this now. I try not to think about that, how time only blows in one direction.
We have a window, outside of which is one tree. Leafless. In the distance there is ice and snowy goings-on, the occasional slice of blue sky. None of it feels pertinent.
DAY ?9
Gracie smiles every time Bobbie comes in, “Bobbie, you wear glasses!” As if Bobbie should be made aware of this astonishing fact. Last night she woke out of a deep sleep, saw Bobbie’s glasses glinting in the darkness, and opened her arms to hug her. I think that is the first spontaneous gesture of affection I’ve seen her extend to a medical person.
DAY ?8
Chemo continues.
Busulfan and soon its equally poisonous cousin, ATG. Chemo, as it’s used in transplant medicine, has been described as “carpet bombing” the body. An assault, from the inside out: massive doses, given over a short time, designed to empty the bones of their own marrow. Gracie’s drug regime will last eight days. Several of the drugs come only in oral form.
Oral chemo—a nonintuitive phrase. The dose arrives every four hours. The drug looks like sludge cut with metal flakes, thick and foul. To administer it, we must wear protective rubber gloves. Gracie—who up to this point has done almost everything we’ve asked—is distraught when we request that she eat poison. Today, at the midnight dose, a drop landed on my pants. Bobbie looked at me with alarm and said, “Ya’ll better change!”
Every four hours we place the syringe on her lip. “Swallow, please.”
“I will take it,” Gracie says, “when Daddy gets back with my drink. When Bobbie comes in tomorrow. I will take it when it snows … inside this room.” We stand firm.
“It’s her job to fight us,” Brian says, “and our job to win.”
The alternative to her willingly swallowing the drug is to feed it to her forcibly through a tube pushed through her nose into her stomach. Each time she swallows, I am flooded with relief; she has exercised agency. She chooses to do the awful thing, rather than have it done to her.
DAY ?7
I watch a spelling bee documentary as Gracie sleeps. She wakes and watches high school students struggle to spell words like fatigue and ennui for an hour without demanding, as she usually would, to put on a “kids’ show.” When I ask her, “Sweetie, do you want a kids’ show?” she makes no answer.
Later she turns on her side to face me and says, “If I do all this stuff, will it get rid of my itchies?”
“Yes,” I say, “no more itchies.” If she is going to lose her hair, feel sick, and be stuck in a hospital bed, she wants a reason. For her, that reason is the eradication of itchies. She looks at me, sensing a beat of equivocation.
“OK,” she says, “I’ll do it.”
DAY ?6
I leave the hospital and return to the apartment complex in the late afternoons. It’s a split-screen existence. Spending time with Gabe is a ripple of joy. If my fear is a plane hurtling toward the earth, Gabriel is a hit of oxygen on the way down.
While Brian stays with Gracie at the hospital I play with Gabe, feed him dinner, play with him some more, change him into pajamas and bee boots, give him a bottle of milk, and pray he will fall asleep on the drive back. If he doesn’t, he has to watch me disappear once more in the big mouth of the revolving glass doors when Brian and I trade places. Mostly he does sleep; he is tired, it is dark, and I sing to him as we drive.
But after a few nights of this routine, it dawns on Gabe that if he doesn’t fall asleep, maybe he won’t wake up to find me gone. All through the drive he struggles to keep himself awake with an unbroken stream of chatter: “Truck. Big trucks. Daddy. Daddy’s tiger. Daddy’s pony. Hospital. Yacie sick.”
I pull into the semicircle of the hospital driveway and call Brian to let him know we’ve arrived. I say, “Gabriel, yes, you have a truck and a daddy, and Gracie is in the hospital.” I stroke his cheek humming, Please fall asleep, love.
But he’s wide awake. When I lean down to kiss him he grabs hold of my hair. “No leaving!” he says.
The week before, I gave him a coin to toss into the lobby fountain and asked, “What do you wish for?” “You,” he said.
I kiss him again. “I have to leave, lovey boy. But I’ll see you tomorrow.”
He still has hold of my hair. “No leaving!”
I don’t know how to respond. “I have to go,” I say. “I have to take care of Gracie.”
He is quiet for a moment, taking this in. And then very deliberately, very slowly, he says, “Take…” Big pause as he works to remember my word, “care,” he continues. Another pause … “Gabey.”