When I walk in the door at last, the first thing I do is the first thing I always do when I get in late. I peek in on the girls and their dreaming forms. Sometimes, when I look at them, I see the babies they once were, all flushed and milk drunk in my arms, their chubby hands curled around my finger. I remember them pulling up to standing in the crib, then plopping down on unsteady legs with surprised giggles. Other times, I look at them and see two young women, a bride and her maid of honor at a wedding, or two grubby travelers throwing down backpacks in the hall after a month hiking Central America together. I want to be there, I think, as I watch them from the doorway, for all of it.
When Lucy wakes up in the morning, she is still ravaged with hives. Bea looks decidedly off too, and I’m not exactly feeling like a million bucks either. So I keep both the kids home from school and take another day off from work and haul us over to the pediatrician. The doctor hooks Lucy up with a different antibiotic, and then casts an inscrutable look at Bea and me. She calls for her nurse. “Let’s do a throat culture on these guys,” she says, pointing to us. A few minutes later, she returns with the verdict. “Yep,” she announces to my younger offspring and me, “it’s strep.” Seven days in, and March is already a hellscape.
Over bowls of pumpkin soup at dinner that night, Jeff updates the whole family on Dad’s condition as diplomatically and nonscarily as he can. He needs to be observed so the doctors can determine if his vomiting and diarrhea are reactions to the chemo, or if it’s the cancer. They’ve stopped the chemo again for now. “I spoke to Mom, and she suggested I go to see him,” Jeff reports. “Sounds like he’s going to be there a little while longer. I thought it’d be good for me to spend a few days out there and help her out, and commute into work from White Plains.”
“Of course,” I say.
“Lucy and I were talking yesterday,” Jeff adds. “While I’m at Mom’s, she wants to do your head.”
Caring for my head is a chore—and a ritual that has become a daily act of devotion on Jeff’s part. I knew him for 20 years before I got cancer. I knew him as a friend, a husband, a father, an ex. But I don’t think either of us ever knew exactly what he had in him until he assumed the role of Chief Bandage Changer and Blood Cleaner. He’s amazing at it. Half a year after surgery, my head still hurts. It’s still scabby and sore and taut and shiny, and it aches and pulls as each new layer of flesh comes in. Jeff tends my head on a nightly basis with a squirt from the enema bottle, a gentle wipe of gauze, and a layer of ointment applied with a tongue depressor. It’s hard for me to manage the job myself; when Jeff and I are apart, I have to rely on a hand mirror and my poor spatial reasoning to get it even close to right. Just from the past few days away in Colorado, the scar has grown all cracked and tight, and my cowlick is going crazy with all the A+D haphazardly smeared into it.
“I can handle it,” Lucy chimes in. “I’ve watched Daddy take care of you every night. It’s not that hard.”
But one Scalp Caretaker per household is enough. My firstborn may still be a nightmare about putting her clothes in the hamper, but she is helpful and kind. She is also 11 and she should not have to clean up her mother’s cancer surgery site. She’s already done enough growing up for one year. Only a few months ago, we had that big fight because she was demanding that I take care of her. That was rough. Now she’s insisting she can take care of me. This is rougher.
“I know you can handle it,” I tell her, “but I don’t want you to.” She looks hurt, like I’m letting her down. “It’s not that you wouldn’t be great,” I explain. “It’s just this—I’m Mom. My job is to take care of you, not the other way around, remember? It’s just for a few days. We’ll all be okay. We’ll all be back together soon.” That’s what I tell myself as Jeff packs an overnight bag and a few clothes and then leaves for the commuter train to White Plains. That’s what I tell myself as the elevator door closes in front of him.
When I talk to Jeff later the next day, he’s in good spirits. “I’m glad I came out,” he says. “I think it was important for Mom. The old man’s got spunk, I’ll tell you that. They came by today with some Do Not Resuscitate forms and he told them, ‘Not so fast!’ ”
“I’m not dead yet!” I say. “I feel happy!”
“He said to me, ‘I told the doctors to do everything possible to keep me around. I’ll be back in the church choir again in no time.’ ”
“And picking fights,” I add.
“He says he just wants to see the spring,” Jeff tells me. “Dad loves the spring.” It’s only three weeks away.
Sure enough, by the end of the week, Dad does indeed seem to be rallying. When I speak to him on the phone, his voice is hoarse but clear. “What’s going on?” I ask.
“Well, it’s not the vacation I’d planned,” he deadpans. “But they’re letting me try some solid food again, and that’s going well.”
“You get your rest and feel better soon,” I say. “The girls have been asking when they can paint with Grandpa again.”
I get off the phone more hopeful and clearheaded than I’ve felt in days. Dad’s on the upswing, and the kids and I are likewise gratefully coming out of the fog of our respective ailments.
A few days later, Jeff calls with more encouraging news about Dad. “I’m not sure I understood correctly,” he says, “but it sounds like the doctors think they can get him into some kind of cancer rehab place and on a different treatment. I don’t know if it’s new drugs or just a different kind of chemo.”
“That’s fantastic,” I say, relieved. They’ll deal with the neuropathy, and they’ll get the chemo right, and Jeff will come home, and it’ll be better. Not perfect, but better.
But that afternoon, it’s all taken yet another turn. When I pick up Bea at school, her teacher tells me, in her gentle, progressive school way, “This was a hard day for her.” This morning she’d told the teacher that she didn’t feel good and sat out most of the day’s activities, sobbing that she missed Daddy. Then it gets worse.
I’m almost finished walking the kids home from school through the bleak March chill, just outside our building, when Jeff calls. “We had a talk with the doctors today. They’re moving Dad into hospice,” he says. “The doctor actually said to me this morning, ‘It’s curtains.’ ”
“Whoa” is all I can muster, and I stop dead in my tracks. “Does he understand? How did he take it?”
The girls look at me with fear and I give an unconvincing wave of my hand, as if to signify it’s not a big deal, and they accommodatingly run off down the street to give me a little privacy.
“He’s in and out a lot,” he explains. “So when the doctor told him, ‘You may be here a week, a month, but you’re not going to be able to go home,’ he said, ‘Well, that’s a shock,’ and then he fell asleep for a while. When he woke up, the first thing he told us was ‘I guess I have to strengthen my faith.’ Then he signed the Do Not Resuscitate.”
He and his mom also have had to run defense—a few of Dad’s well-meaning friends have been calling, trying to visit, trying to rouse him out of this late-stage cancer thing. “His friend Bob came by and told him he could beat this and come home,” says Jeff. “That was a disaster.” Dad was a wreck the rest of the afternoon, doubting the wisdom of his signing the DNR and questioning whether the doctors could do more.
“How are you?” I ask.
“Your whole life, you have your parents,” he says. “I don’t know how to not have them.” I’ve spent much of my life not having my mother and father, in one way or another. Their absence has defined me in ways big and small. Like how I will never fully understand what Jeff is going through now. His grief is a privilege I’ll never have.
“I’m going to get some dinner with Mom,” he says. “Then I’m going back to the hospital to be with Dad, for however long it takes. I don’t know how I’m going to do it, but I swear, I’m going to get through this month and I’m going to bury my father.”
“Whether he’s dead or not,” I reply.<
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A puff of laughter escapes from the other end of the phone. “And that’s why you’re the woman for me,” he says.
On the way to school the next morning, Lucy is muttering a poem to herself. “I’m nobody,” she says. “Who are you?”
“Nobody too,” I say. Lucy’s going through a thing lately where she’s fascinated with poetry. She scribbles haikus in her journals, and sometimes, she unconsciously marks meter with her fingertips as she talks. She’s got an ear for it I’ve never mastered. Yet this morning, I cannot help remembering my own schoolgirl memorizations of Dickinson, and how wrong that Belle of Amherst turned out to be, about a lot of things. I’m not nobody, and death does not kindly stop for anybody. It barges in, not waiting a turn. It doesn’t give a damn if you have your own stuff going on, or if one of your best friends does.
But Lucy, her romantic soul bubbling with verse, continues. “Do not go gentle into that good night. Rage, rage against the dying of the light.” She halts to think about it. “Do you know that one?”
“Yes,” I say. “I do.”
“What’s it mean?”
“It’s about a man whose father is dying,” I tell her. “The son doesn’t want him to go. He wants him to fight.”
Jeff harbors no such Dylan Thomas–like fury. Instead, whenever I speak to him, he pings between a merciful impatience for Dad’s suffering to be over and an agonizing longing to keep just one more day, one more hour. There’s no more to be done but wait. These days are just about comfort and grace, two of life’s more elusive pleasures. Dad cannot even have solid food anymore. But he will not go sugar-free into that good night.
The next day Jeff calls me from a party supply store somewhere on Mamaroneck Avenue. This morning, when he and his mother had gone to see Dad, the nurse had warned them he’d pulled out his tubes during the night. There was blood everywhere. “I have found my purpose,” he now says, sounding happier than I’ve heard him all month. “My dad wants lemon lollipops. I’ll be goddamned if he’s going to die without them.” Jeff, the only child, the Little Emperor of his family. Ever the star, ever the one taken care of. This year, his father and I have given him the chance to become something new. The chance to be the one to take care of. To be the one with the lemon lollipops.
“He keeps saying he’s sorry he’s putting us through this,” Jeff says. “He was asking this afternoon, ‘Why doesn’t God take me? I’m ready.’ He apologized to me for taking so long.” The only thing worse than feeling like you’re disappointing people by dying has got to be feeling like you’re disappointing people by remaining alive.
While Jeff keeps vigil at his father’s bedside, the girls and I struggle through the day-to-day, the stuff of life that never relents even when you’re otherwise in chaos. Lucy still has interviews and tests at the desirable public middle schools. There is Sunday school and the after-school art program, and there are bills to be paid and deadlines to be met. Yet we grasp for grace in our own ways. We find it in all sorts of random moments, clinging to each other for loving warmth this cold, strange month. It’s there in the nights we pop in a movie and have quesadillas on a picnic blanket for dinner, or in quiet afternoons at the library. I cannot have all their memories of March be sad ones. I want my daughters to look back someday and recall the tender ones as well.
March 17, 2011
I am not my most pulled together this particular St. Patrick’s Day. I had tried this morning to drop by Time Warner Cable on the way to the train station to replace our cable box, but the office was closed. I am consequently about to bring a large, broken piece of television equipment to my father-in-law’s deathbed.
Jeff is bleary-eyed, unshaven, and he needs a haircut. His shirt looks like it’s been slept in, and I swear he’s grown a few new gray hairs in just the past week. Yet when I see him waiting for me at the Tarrytown train station, my heart melts. There’s a melancholy maturity to him, an indefinable substance. I have never before felt more sure that this disheveled, rumpled mess is the man I love.
He throws his arms around me, and then pulls away quickly, embarrassed. “I’m kind of gross,” he says. “I smell like hospital.” He does. There’s an unforgettably strange aroma on him, a scent both antiseptic and primal, like medicine and disease.
“I want you to prepare yourself,” Jeff says as we drive toward the hospice. “Dad doesn’t look like Dad.”
“It’s okay,” I tell him. I am brazenly confident this particular part should be a snap. After all, I’ve watched enough people prepare themselves for me. Ever since my surgery, every time another friend sees me for the first time, I watch that flicker of self-steeling on their faces, that tight, frozen, Academy Awards nominee whose name has just not been called look. I have seen that look enough to know how to mimic it, that poker face of bad news.
Of course, in my case, it’s usually followed by a subtle sigh of relief. I am, aside from the head scar that still needs care, in good health. I tend not to run at my loved ones like a bull, my angry, hot pink wound charging headlong at them. I wear concealing hats and fanciful barrettes and sport a clever comb-over. I try to put people at ease, to not make them feel they’re in the company of a freak. Scars and all, I’m not so hard to look at. I’m not in the final stages of disease. Dad is.
It takes five minutes to drive to the hospice, every moment of which is spent with Jeff chattering nervously all the way. In just two weeks at Dad’s bedside, he’s dropped out of the rhythm of regular life. He cannot speak of sports scores or American Idol results or Beltway politics or vacation plans. All he knows right now are morphine drips and interrupted sleeps. All he knows is that his father is dying.
By the time I walk into the room, my confidence has evaporated and I am shaky with the gut-twisting knowledge that this is the last time I will ever be with Dad. Mom, who has been sitting silently by the window, looks up and rises to give me a hug. We wrap arms around each other in a big squeeze. “It’s good to see you,” she says.
“You too,” I agree, and it is. There is good in the sad stuff. There is good in the pain. I wonder why I never knew that before.
At the foot of the bed, a TV is set to peaceful scenes of flowers and mountain streams and sunsets. Very Soylent Green. “Please,” I whisper to Jeff, “when it’s my time, just give me a continuous loop of C-Span Book TV, so you can tell people I was literally bored to death.”
The hale, chubby Dad I sat with at lunch and shared birthday cake with in January is gone. This man is considerably thinner. His chin is dotted with stubble, and his flesh is thickly mottled with dark purple lesions. A tube coming out of his nose helps him breathe, and another one in his abdomen drains swampy, green-brown fluid from his stomach into a pitcher in a steady flow. It’s called ascites, but I think “sludge” says it all. This is what late-stage cancer looks like. It’s rotting him before my eyes. It scares me damn near out of my mind. I hadn’t been prepared for this after all.
“Hey there,” I say softly, as I move toward the bed.
He acknowledges my entrance with a faint nod and weakly extends his hand. I take it gently, my fingers caressing his papery flesh. “Can I go now?” he whispers. “I’m ready to go.” He seems so serene.
I pat his hand lovingly. “Soon,” I say. “We’re all right here with you.”
“I have to go,” he says again. What beautiful acceptance, I think. What calm dignity. Then he adds, “I have to go pee.” Oh.
“When he wants to make a break for it, he won’t warn you like that,” Jeff says. “The other day he tried to sneak out of bed. Didn’t you, Dad?” He musters a sheepish smirk.
I summon his nurse Gloria, a broad-shouldered good old gal with a southern accent and a button dangling from her ID badge that says JESUS SAVES. She fiddles with his catheter and sings “It Is Well With My Soul” while Jeff and I discreetly look away, effectively deflating any remaining delusions I may have had that this was going to be some poignant movie scene. It turns out that except for my horribly unk
empt hair and two inches of roots, dying is nothing like Terms of Endearment.
We sit together for the rest of the morning, all four of us, as Dad drifts in and out of seemingly multiple levels of awareness. He is sometimes very peaceful and often distressingly uncomfortable. Mom and Gloria have to make constant adjustments to his assorted tubes and drips. His voice is low and soft, but he keeps trying to talk.
He is agitated. “Agitated”—that’s the word Gloria keeps using. “They usually become agitated right before they go. It’s because he’s traveling,” she explains. “They go in and out between this world and the next.” Do they? I don’t know what they do. I don’t know where they travel.
I watch Gloria as she goes through the routines of caretaking. She is competent and inspiringly brisk. But Dad is just another patient to her, another one of the departing, going through a checklist of expected actions before his final one. He’s not the man who married her. He’s not the man who raised her. He’s not the man who loved her when her own father didn’t. He’s just another tourist in the airport lounge of death. A life of globe hopping, of pyramids climbed and rivers sailed, and now, Dad is taking one last trip. I hope the destination is blissful, because the journey is a bitch.
In a calmer moment, Dad turns in my direction, and his gaze seems remarkably bright and knowing. He looks at me like he’s looking at me for the first time. Or like he knows he’s looking at me for the last time. “Such pretty eyes,” he says at last, and he pulls me in for a kiss. The plastic tubing running out of his nose bumps my cheek.
“You too,” I say.
Around the time we would have eaten lunch if anybody were still eating lunch these days, an intern comes in and checks on him, then gently takes us aside. “His vitals are slipping,” she says. “It’s likely only 24 to 48 hours now.”
There’s no more putting off the inevitable anymore. Dad is going to die imminently, and that means I’ve got a BoltBus reservation to cancel.
A Series of Catastrophes and Miracles Page 9