There comes a time in the course of a fatal illness when the desperate routine that has worked to suspend it just above the depths doesn’t work anymore.
There is little comfort now in having Joy in a chair by my bed all night long.
She has stopped taking notes on my nightly pacing jolts because there are so many of them now that they’ve become an incalculable stream. And each one lasts for what seems like twenty or thirty minutes straight, until my heart eventually begins to budge toward a safer pulse rate. Pain episodes have become constants, as has the need for soothing. But no friend can scratch a back that long, and even if she could (Joy surely tried last night), incessant tactile motion dulls my skin’s sensitivity until the sweep of fingers across my back feels like nothing at all.
So we try standing by the window. But by three a.m. we’re too sleep-deprived to talk, our mouths and ears shut down, and we become swaying posts with fluttering eyes. The Hawaiian leis and skirt grass rustle beneath Val’s slightly open window, tempting Joy and me to launch a few frustrated swats and hurl a curse word at them. And even just the thought of that blinking red light out in the distance there makes me want to throw up.
Too little sleep and too little hope rattle the foundations of this room now. Every thing and every soul—every act and word and presence of mind brought to it by nine women who’ve held on and on in the name of resolve and a newfound understanding of love and friendship—are shaken now. Exhausted. Perhaps even beaten.
A number is set inside a circle on the wall.
And in the glaring despair of its message day after day, my friends’ positivity has begun to fade. It occurs to me that perhaps they’ve even begun to grieve me. A pang of sadness clutches my stomach now as I realize: the loss of my friends’ hope feels like my loss as well. But there is nothing to be done about it.
I look out the window along with Joy and find one of those rare blue-pink-orange watercolor sunsets we’ve come to love—but neither one of us bothers to mention it. “I’m sorry,” I say.
Joy turns to me slowly. “What, hon?”
“I said I’m sorry, but . . . I want you to know that you shouldn’t have any doubt about whether I am going to turn off my pacemaker in six days. Really. Please take me seriously.”
“Amy—I do . . .” She draws in a deep breath, holds it, and then exhales long and somber. “I hear you. I believe you. I see what’s going on with your body, how much worse your heart has become. I see the level of pain.” She pauses, lifting her eyes to the ceiling to ward off tears. “You have my support.”
“Thank you.” I pull two tissues from the box and offer her one.
Just then, Leja lets out a squeak of anguish. She crosses her legs and hunches forward, burying her face in her open hands. I sit up and reach toward her, but Joy intercedes, touching my shoulder and recapturing my gaze.
“Tell me, Ames . . .” she continues, tenderly, scooting her chair right up against the side of my bed. “Is there something I can do for you? Something to prepare for what’s to come? Do you want me to write down what you’d like done after you’re gone? Maybe you want to give your journals to someone. How about the book you were working on last year—save or destroy? You want me to get some stationery so you can write letters to Scott and Casey?”
“I’ve written them already. Scott’s got them, actually. But yes, it would be great if you could make a list of a few things. Thanks.”
Joy reaches into her tote bag and pulls out a yellow lined pad. She climbs on the bed and sits alongside me, sharing my pillows. “Okay, shoot . . .”
“Well, I think I’d like to give Jill the necklace I’m wearing . . . and, um . . . I would like someone to destroy my journals, actually, since they’re pretty private . . .”
“You sure? Maybe Casey would like to have all those memories of you—”
“I must to go!” Leja shouts, jolting suddenly from her chair. “I cannot listen this!”
“Leja . . . but Joy is just—”
“I come tomorrow in the morning,” she insists, marching out the door.
Joy does a double take. “What was that?”
“You know Leja . . . so emotional.”
Joy nods.
But what we don’t know is that Leja is headed back to the bungalow to report to Scott—huffing and puffing—her version of what just took place. Half an hour after she storms out of my room, Scott calls to tell me something so off-the-wall funny that he has to pause a few times midstory to laugh at his own words.
“So Leja just came home and she’s got that face on, you know, like she’s going to explode . . .” Scott begins.
“She was pretty upset when she left here,” I confirm.
“And she says—ha-ha—in all seriousness, that—ha-ha-ha—Joy wants to help you die so she can marry me!”
“Oh my God . . .”
“Yeah. Ha-ha-ha . . .”
“What’d you say to her?”
“I laughed—which made her mad, of course. But it was the most ridiculous . . .”
“It’s crazy!”
“I told her she’s wrong, but she won’t hear it. She feels she has to protect you . . .”
“From Joy? Give me a break!”
Joy hears her name and perks up. “What about me?”
“One sec . . . one sec . . .” I tell Scott I have to go, we’ll talk later.
I bring my hands to my head. “You’re not going to believe this, Joy, but Leja went back to the bungalow in an insane rage and told Scott that you are helping me die so you can marry him!”
Joy pauses before responding. She frowns deeply. “Wow.”
“Scott laughed at her—really, he thinks it’s so funny . . .”
“Hmm, yeah . . .” Joy ponders. “I guess we should expect nuttiness from her. But I have to say, this is hurtful—because I really feel like I’ve taken Leja under my wing every time I’ve been here. I’ve made a point of spending alone time with her, listening to her fears and trying to explain things in a way that helps her. I’ve praised her and said what a great friend she is to you. I even bought her a necklace . . . like this one.” She tucks her pointer finger under the thin gold chain around her neck to show me—it says Love in tiny block letters. “Leja told me she liked it, so I got her one in DC and brought it with me on my next visit.” She sighs wearily, throwing up her hands in bewilderment.
“Please, please—don’t take her seriously. Scott and I have known Leja a long time. She can spin danger out of a sunny day at the beach. And once she gets an idea in her head . . .”
Joy springs from her chair. “Let’s just move on, shall we?” She reaches for her toiletry bag while sliding her feet into slippers. “I think I’ll wash up now, brush my teeth . . .”
I catch her hand as she shuffles past me toward the door. “Really, Joy.” I look up at her. “This is just too silly . . .” Her eyes are brimming with tears.
“Not to me,” she says.
From: Joy Ceterra
Subject: The latest
Date: May 7, 2014 at 10:38 PM
To: Lauren Steale
Sweet Lauren, here is where I come out tonight.
The main thing we must stay focused on is Amy finding peace. Think of how much she has been through. It’s not humane all these years. While we want her to go on for us and for Scott and Casey, we have to wish for what is best for Amy and only Amy.
So we have to try not to be sad. Try to think about Amy finding peace—if that comes from a new heart then we will be lucky too, but if it does not then I will accept it for her being at peace after 26 years of the most heroic fight we’ve ever witnessed.
I keep the strong faith that there will be a new heart but I wish for it only if it will give her the quality of life that she aches for.
Love you.
Joy
That night, we manage to sleep only minutes at a time, not even half hours. But sometime around sunrise, my pacemaker firing quiets down and we are finally able to withdraw from the window and really settle in our beds. Sleep comes to both of us immediately and we give in to it, which means straying from our usual routine. Typically Joy spends some time emailing her office early in the morning and then wakes me at seven so I can get dressed and cleaned up before Dr. Kobashigawa arrives half an hour later. Today, though, for the first time in all of her mornings here, we are both still asleep at 7:10. We break our hospital ritual now because, it seems, this ritual has broken us. We can’t keep doing what we’ve done all these weeks. Conditions have changed. As Joy said to me after two hours standing by the window last night, “This is a whole different ball game.”
“Morning, morning . . .”
What? Dr. Kobashigawa . . . this early?
I open just one eye to make sure—yup, it’s him.
Joy rouses drowsily and reaches down to check that her flannel pajama top is buttoned up.
The doctor remains standing, not taking a seat like he always does. “We have a donor for you,” he says—just like that.
I sit up.
“We’ve been working on it all night. You’re number one. It’s yours.”
“Hhhhhow . . . whaaa . . .” I press my fingertips against my cheeks to make sure I’m really here.
“It’s an excellent heart from a thirteen-year-old girl.”
I’m dazed, my voice full of wonder. “My first donor was thirteen too . . .”
“She is in great shape—an athlete, actually. And her parents donated all of her organs.”
My eyes shift toward Joy with a shot of sorrow; the reality of this young death tempers my elation.
So many lives saved . . . but these poor, poor parents.
Dr. Kobashigawa continues, “She matches your antibody profile very well.”
“Unbelievable,” I whisper.
“But they still need to do the cross-match over there.”
“Where?”
“A hospital in Nevada.”
“So they have to . . . take all that blood and . . . helicopter it there, right?” I am pushing through the breathlessness now.
“No, actually, it’s already there. We sent your blood just before you became a 1A.”
I remember hearing about this from Emily a few weeks ago—how one particularly large blood draw I’d had was being divvied up and sent to various hospitals in nearby states where a donor heart might possibly wind up. My blood would be stored, she told me, and used for speedy cross-match if a donor was identified for me. It was supreme good luck that my blood had landed in storage at the hospital that now has a heart.
“Now,” he continues, dropping his voice from kindly to cautioning and clear, “we won’t know if this heart is viable for you until we get the results of the cross-match. I expect we will know by around four this afternoon.”
“Okay, okay . . . so should I shower with the antimicrobial . . . ?”
“No, not yet. A lot can happen between now and surgery. A lot. So I suggest you enjoy the day, eat breakfast if you want—the surgery wouldn’t happen until sometime this evening. Emily or I will be in touch.”
“Wow, oh, wow . . .” My hand rises to cover my face; I’m looking through trembling fingers. “I can’t believe . . . I really didn’t think there would ever be a match for me. Six days left on my wall count, Dr. Kobashigawa. Six.”
His eyes sparkle as he smiles. “I told you to have faith.”
“I couldn’t . . . I am so sick and . . . everything seemed so impossible . . . I just . . .” A tear slips onto my cheek.
“I’m so pleased, Amy,” he says, stepping toward me. I expect him to extend his hand for our customary parting shake, but no. This time, he holds out his arms. “Come here, darlin’,” he says, and reaches down to hug me.
I lift my arms and wrap them around his white coat while tears stream silently down my face.
Scott and I decide that we are going to keep this news mostly quiet. The exploding heart—and the plummeting of my spirits afterward—taught us a hard lesson. Scott calls Casey, I call my family, and when Jody arrives in an hour or so, we will tell her everything, of course. But otherwise, for now, the excitement has to stay here in this room.
Meanwhile, an unfamiliar exhilaration is coursing through me. I feel myself brightening from head to toe. My knees quiver. My hands shake. My breath starts to quicken, and I turn my head to Joy for reassurance. “Whoa, help me out here. I don’t want to whip myself into frenzy now, you know? Not sure my heart can take this much excitement.”
“Got it!” She jumps from chair to bed and nuzzles up to me playfully. “Shhh . . . okay now, let’s be a couple of cool, cool cats . . .”
“I do not like cats,” Leja announces.
Joy shoots her a barbed look and whispers in my ear, “Hold me back . . .”
She’s had it with Leja.
What happened between them last night has set Joy’s mind against her, and even today’s happy news doesn’t douse the still-smoldering peeve. I didn’t notice it until Leja just interjected with the anti-cat declaration, but now the tension is pervasive and uncomfortable. I feel bad for Joy. And this makes it impossible for me to share in Scott’s laughing it off.
“I have to say something here—sorry, everyone . . .” I announce. “I want to get this out in the open and far away from this happy day, okay? Okay. What you said to Scott last night, Leja, was pretty darn silly . . . absurd, actually.”
She purses her lips like she’s just tasted lemon—harrumph.
I tsk-tsk at her, more playful than disapproving. As off base and extreme as her warning was to Scott last night, I understand the driving force behind it. Leja has long been my fierce protector, and I hers.
Scott takes over jovially, “Re-diculous!”
Leja straightens up proudly, putting on an air of righteousness. “Joy was taking notes to Amy, for what to do when she is dead. This to me is not a good friend!”
“Yes, it is, Leja . . . it is!” There is a lilt in my voice, but I mean to convince her. “The best friend is the one who knows you like you know yourself . . . and who loves you enough not to push her needs and her wants onto you.”
She waves me off. “I do not agree. Sorry.” Her voice is clipped. Final.
Scott grabs Leja around her waist and squeezes her into a tickle hug, “Leja, Leja . . . you are funny!”
The corners of her mouth turn up reluctantly.
“I am putting the matter aside,” Joy says, “because it is totally ludicrous.”
“And on a day like this . . .” I add, “we allow only good thoughts and kind words and . . .”
Dr. Kobashigawa appears in the doorway.
He strides into the room and stops short of handshake position. “Well—you’re a nearly perfect match with your donor,” he says. “I couldn’t be more pleased with the cross-match—so here we go . . .”
A collective roar comes up. Joy jumps from her chair. Scott lurches toward me with both arms open, sweeping me into an embrace. Over his shoulder, I see Lachalle pop up behind Dr. K in the entryway vestibule, grinning delightedly. “We’re going to need to take some blood now for the eculizumab treatment,” the doctor continues, “and you’ll have your first infusion in about an hour and then another one during surgery. After that, you’ll shower”—Lachalle smiles even more gleefully and lifts the bottle of antimicrobial wash so I can see it—“and put on a gown, and I think you’re scheduled to head into the OR sometime between around seven and eight tonight.”
“This is really happening, then . . .” Scott says, bug-eyed.
“Oh, yes, this is happening,” he confirms, shaking Scott’s hand and then turning to me. “I’ll see you sometime tomorrow—although I’m not sure you’ll remember.” I get a handshake too. Then Joy and Leja.
Lachalle moves aside to make room for him. “Amyyyy!” she cries. “You got your heart!”
It’s evening and my hospital room settles into a contemplative quiet. Jody is here now (Jack is away on business), along with Joy, Scott, and Leja. Each of them has their own chair and their own private thoughts. There is no talk. After the swirl of medical activity—blood work, an antibody treatment, more blood work, chest X-ray, EKG, and my long, sudsy shower—the moment has arrived when the focus narrows and intensifies: in just a little while, a heart will be cut from my chest and a new one sewn into place.
On the other side of this marvel is its sheer enormity. A family has suffered an unfathomable loss and, without weeks or days or even hours to mourn, has risen up with mind-boggling beneficence that awes and humbles me now just as it has for decades. Heart transplant has its underside of medical shortcomings and travails, to be sure, but organ donation is one hundred percent beneficence and altruistic perfection.
I close my eyes for a moment and imagine the mother of the teenager whose heartbeat may soon become mine. A deluge of emotion floods my mind with longing: oh, how I wish I could reach out, right this second—person to person, mother to mother—and assure her that if I am lucky enough to survive this surgery, I will take the very best care of her child. For I have already watched over and nurtured one thirteen-year-old donor-heart girl, devoted every last bit of myself to protecting her from harm, doing all I can to keep her beating strong and free from heart transplant ills. And now I will do the same for this second lifesaving daughter-angel.
“Don’t you worry—I’ve got this,” I whisper under my breath. “You can count on me.”
Lachalle comes in and I quickly wipe away tears, but she senses them anyway, nodding slowly and smiling. She hands me a clean gown—the first one I’m glad to put on here at Cedars. I slip off my sweatshirt but leave on my black cotton leggings. She warns me that they’re not sterile and that the surgery team is going to make me take them off the minute I step into the operating room.
“Step in? Doesn’t she get wheeled in?” Joy asks.
“No. Amy won’t get any sedation until she’s on the table, so she’s just gonna walk on in there.”
“I couldn’t have done that two hours ago!” I chirp, and everyone chuckles. Just a couple of hours ago, they’d seen me go loopy after receiving the intravenous infusion of Benadryl that preceded my first eculizumab treatment (to prevent a reaction to my first dose). By that point, Scott had spread the good news broadly to friends and family; my cell phone rang again and again—and for the first time since arriving in California, I answered every call. Jill happened to call just as the Benadryl swept through my veins and set my lips into an uncontrollable quiver. She screeched into the phone, “I’m so happy!” but all I could say in return was a very shaky, garbled “I can’t talk, Jill. I mean, I really cannot talk!” This made her laugh and laugh—just like old times.
“All right, then, Amy, here’s the plan,” Lachalle announces. “I’m going to go fetch your wheelchair now and set it in front of your door. It’s almost eight, so I’ll check if they’re ready for you.”
“Thanks,” I say, looking up at her and then down at my hands. I’ve already taken off my wedding ring in preparation for surgery. It occurs to me just now that I might never put it on again.
Joy notices my reflective turn. “Let’s give Amy and Scott a moment. But first . . .” She approaches the bed, and I stand up to face her. She tears up immediately. So do I. We have no words at first, just a squeeze of hands and a deep meeting of eyes that hold the history of the three months passed since we stood outside my bedroom door and talked of my grandmother and the impossibility of being saved by the comfort of company in the darkest of nights.
“We did it, Joy,” I whisper now, confirming out loud what we already know: that I would not be here at the end of the great and terrible waiting list challenge if Joy had not been immersed in it with me since the beginning. We bring our noses together and shut our eyes tight.
Next it’s Leja. I know I’ve got to be strong and confident for her—she’s already shuddering with emotion. “I’m going to do great,” I say, and we hug.
And hug. And hug. And hug.
Her embrace is more like a clutch. Leja wants me to have this surgery, of course, but she’s frightened of its severity. “They’re going to save my life now,” I assure her.
“Okay . . . yes . . . okay,” she says, weeping, “they will do.”
I have to sit on the edge of the bed when she finally lets go.
“Ames,” Jody says, grinning, extending her arms down toward me. “Love you. You got this. See you soon. And what can I say? I’m so, so happy for you—and Jackie boy is crazed that he’s not here. But he’ll be back tomorrow morning.”
“Love you, Jody.” She retreats to the far corner of the room with the other girls. I turn my head and find them in a group hug—arms resting atop shoulders, foreheads tipped against one another. The all-too-familiar cot stands upright in a folded position beside them; no one needs to sleep in it tonight. A background of streetlights glows outside the large window, illuminating an ecstatic huddle among women who, before two months ago, had never met.
So much about this moment strikes me as extraordinary.
An image comes to mind, and I close my eyes to try to preserve it—I’m in a jubilant embrace with Jody, Leja, Joy, Ann, Robin, Val, and the other girls, all of us silhouetted in the prism of a rainbow. Jill’s violet runs into Lauren’s blue that seeps into Jane’s green and becomes my yellow . . . We share one another’s light and color, transforming and transformed each by each and shimmering.
A shiver runs through me.
My gosh, look at us—some kind of magic . . .
I sway as Scott’s weight sets down beside me on the edge of the bed. I grasp at the mattress and pop open my eyes into the moment. Directly in our line of vision is the wheelchair that Lachalle has placed in front of the open door. Scott takes my hand and brings it to his lips. “Come back to me, okay?” he says, welling with tears. “Just come back to me.”
“I will, Scotty. I can do this—you know I can . . .” I lay my head on his shoulder.
Dimitri, the night nurse, appears in the doorway. Justin is off tonight. “You ready?” he asks.
“Yup.”
Scott helps me up. I walk to the wheelchair. Joy, Leja, and Jody are in the hallway now; they stand beside me with forced smiles and wave.
Bye, Ames . . .
See you in the morning . . .
Justin sends you a smoochy-smoochy . . .
“Joy—get your mind out of the gutter!” I tease as Dimitri unlocks the wheels and gives the chair a push. Scott walks alongside me through the silent, empty hallway. Around the corner we go to the green door at the end of the next straightaway. It’s just an ordinary entrance, not even a double door. I never knew it was the heart transplant operating room—until now.
Dimitri tells Scott, “I will push her through here and you can say good-bye before she goes into the OR.”
“All right.”
The door opens, and I roll into a dimly lit passageway. Just five or six feet inside, we come to a stop in front of a set of wide doors. “This is it,” he says, locking the wheels in place.
A kind-faced woman in a blue surgical cap emerges at once. “Come on in, Amy. We’re ready for ya.” She reaches for my arm and guides me to standing. “Okay, quick kiss now,” she says, cheerfully. “We’re gonna get going.”
I lift my face to Scott and we kiss—quick—just like she says.
And the next thing I know, I’m lying flat on the operating table in a bright white room. A swarm of nurses and doctors dart here and there around me, all of them friendly and chatty. They want to know if I’m warm enough, what kind of music I like, whether I mind the light that’s just above my head. They pull off my black cotton pants.
I can’t breathe . . .
As jolly as this scene is, I bring to it the very reason I am here, on this table, with my arms splayed way out to the side now, perpendicular to my body and secured on cushioned boards. My heart steals my breath. I’m going to get another one that will restore it.
“Can you put me out?” I ask abruptly, loud enough for all to hear. “I just want to be put out, please. Take me out of this body . . .”
A burn of anesthesia shoots through the needle in my forearm . . .
A rush of elation!
The most wonderful, enveloping sense of ease.
My last thought: Thank you! Thank you so m—
* * *
It’s one a.m.
Scott, Leja, and Joy wait at the bungalow.
The surgeon took off for Nevada in a helicopter from Cedars’s roof hours ago, promising to call Scott’s cell once he returns with the donor heart. Another surgeon in the Cedars-Sinai OR has already opened my sternum to facilitate swift removal of my sick heart at the moment the healthy one arrives.
Meanwhile, conversation at the bungalow has given way to stifling silence. Scott sits alone, unfocused, in front of some late-late-night TV. Leja and Joy settle outside on the porch overlooking the little garden. Every hour or so, one of them calls Scott’s cell just to make sure it’s working. Growing concern pervades the atmosphere now: Why is this taking so long? They don’t dare exchange last-ditch guesses.
Donor hearts can explode, you know . . .
Scott pushes himself up from the couch, lands his palms on either side of his head, and begins to pace. Joy glimpses him through the window and pleads with outstretched arms, “For the love of God—ring, damn cell phone . . .”
And then . . . a sound.
A whirring.
Louder and louder it drones, until it becomes a roar—a palpable, trembling force that seems to be rising over the back side of the bungalow.
Joy and Leja rush down the few steps onto the gravel path and look to the sky . . .
A helicopter!
Red and colossal and powerful—racing, racing toward the Cedars tower just two blocks down San Vicente.
“Scott! Scott!” He hurtles toward the screen door and through. “Look!”
All hands grasp—Scott to Joy to Leja.
The helicopter hovers above the landing strip and then slowly, slowly . . . sets down.
Scott’s cell phone rings inside the bungalow.
“Ah!” He runs at once to answer it. “Hello!”
It’s the surgeon.
“I’m back. The heart is perfect. We’re going to get started . . .”
* * *
From: Scott Silverstein
Subject: Update
Date: May 9, 2014 at 2:27 PM
To: Jill Dawson, Ann Burrell, Lauren Steale, Valerie Yablon, Jane Keller, Robin Adelson, Jody Solomon
Just saw Amy in the ICU. She was starting to come out of sedation, and I think she was motioning for a writing pad, or maybe the waving of the hand was telling me to get out. Not quite sure, but I’m sticking with the writing pad story for now.
It’s always a bit of a shock to see Amy after a major surgery. But this time I was really surprised and amazed. Her color is terrific. Her feet (which had been looking gray) are now a beautiful, healthy pink, as are her fingers and cheeks. Considering she’s got a bunch of tubes connected to various parts of her body and about 8 drips going at the same time, she really looks fantastic.
All that said, I don’t want to get ahead of myself, as this is still early in the process. Bleeding remains an issue, and she is taking a bevy of new drugs and huge doses of immunosuppressives, including some experimental ones that have only been used on a handful of heart transplant patients. So, we should expect some bumps in the road and unexpected turns. But so far so good and seeing her looking so well is truly tonic for the soul. Speak to you all soon.
From: Jill Dawson
Subject: Re: Update
Date: May 9, 2014 at 10:25 PM
To: Scott Silverstein
Scotty, this is so completely wonderful. I can’t imagine how you’re feeling because I can hardly contain myself. I know everything is still so precarious, but all of your updates about Amy’s developments have been so encouraging. She IS a warrior and she will fight. I continue to be amazed by her spirit and strength.
Oh yeah, and you’re not so bad either.
Love you both.
Xo