“All rightie then—how ’bout now I show you the little surprisey-poo I’ve brought with me?” After a morning of mostly solemn talk we’ve hit a lull, and Jill decides at once to shift the mood by taking her voice up an octave and laying on the silly, sarcastic edge that is our nonsense way. “I’m so ex-cccited!” she adds, going even higher in tone while pulling her suitcase from under the cot. “Surprisey-poo-poo!” she trills again.
I play along, matching my intonation to hers. “Is it . . . bigger than a bread box?”
“Well . . . it’s definitely funnier, I’ll tell you that.” She unzips a compartment and retrieves a plastic bag.
“Ah, so it’s funny—hmm. I was thinking it might be a new heart you’ve got in there.”
“No, sorry, but it does have to do with something that goes thumpity-thump, if you know what I mean, and I know you do!” She flashes me a twisted smile from where she’s kneeling on the ground, “I’m referring to love, of course—try to keep it clean, you perv—”
“You’re the perv.”
“I know you are but—”
“What am I?”
We’ve become eleven years old again, total goofballs, and I’m feeling a lot lighter for it. Good thing it’s just Jill and me in here, so that we can let loose. Jody has already come and gone for the day, and Leja isn’t due to arrive for another few minutes. We wouldn’t dare indulge in this ridiculous banter in their presence.
Jill sits down in a chair with the plastic bag on her lap. “Now, close your eyes. I’ve got something to read to you.”
“All right.” I quickly close them, but Jill delays with deliberate pause.
“Ahem, ahem”—she means this to be a dramatic reading. “I’m going to skip right to the good part, ahem—” There’s a rustling of pages. She goes high pitch again:
They sit at their usual table in the back. The restaurant is dimly lighted and warm, and their hands are sweating because they are holding hands and they are always afraid someone might see. “Barry, there is something I have to tell you . . .”
My eyes pop open. “You still have a copy!”
“Not just a copy—the original! Get a load of this . . .” She shuffles the collection of pages and turns the top one toward me. “I think this is your cover art, right?”
“I can’t believe it—yes!” The colored-pencil sketch I made in the sixth grade stares back at me, faded out by time, but clear enough to decipher the three red hearts I drew inside a large blue triangle, as well as the title of Jill’s invention—Triangle of Love. I reach out for the makeshift book. “Let me see that!” It has been almost forty years since I held it in my hands.
“You’re gonna laugh!”
I begin flipping through the pages. “Barry! Caroline! Ha-ha . . . talk about pushing the envelope!” Our sixth grade teacher’s first name was Larry, and the teaching assistant in our classroom was Carol. I remember how it made us feel to write something so provocative; aiming our sexy story at two adults in our everyday life was, we thought, ingenious and a sure mark of our maturity.
“Take your time—read all the way through,” Jill advises. “Then we’ll talk. I’ve got to call the office anyway.” She reaches for her laptop.
“‘Triangle of Love, by Amy and Jill,’” I read aloud, turning the page. “‘Dedicated to everyone who falls in love.’ Oh please! What was wrong with us?”
“You don’t know the half of it. Read on . . .”
Leja walks in just then and flops immediately into Lauren’s chair near the door, flushed and trembling. “I see just now something so sad!” She thumps her open palm against her chest, catching her breath before more words spill out. “In the waiting room! A family! Seven or ten of these people, they kneel on the floor to praying. I stop and I look—for who is it they pray? And I talk with one of them. Oh, this is a terrible . . .” She brings her fist to her mouth and shuts her eyes tight.
Jill raises her eyebrows at me, curious but not surprised. She has known Leja for as long as I have and is plenty familiar with the intensity of her emotions. I hold up my hand to say, Give her a few seconds . . .
Leja shoots up from her chair and begins to pace. “The woman, she is thirty, and she is wait for a heart transplant in the intensive care. Husband, children, brother, cousins, kids—all in the waiting room . . .” She continues on, interspersing the story with words like antibodies and total artificial heart and Swan-Ganz catheter. I am impressed with Leja’s knowledge, and the careful, exacting attention she pays to all she encounters here at the hospital, in spite of being overwhelmed by it. “So will be very long time before she can get heart. She has many, many antibodies like you do, but she can’t be 1A because her kidneys, they do not work. Her creatinine is more than three, her husband tells to me.”
Leja even understands creatinine blood levels as a measure of kidney function. She’s been following my levels each day, after all—listening intently when Dr. Kobashigawa reassures me that my kidneys are doing remarkably well under the circumstances, and then repeating his words back to me later on when I imagine that my bloated feet mean kidney doom. Using real medicine as a resource is a marked change from the naïve and superstitious Leja, who, for as long as I’ve known her, has believed that cold drinks are actually the cause of the common cold. These two months in a hospital room have taken her medical acumen far beyond the Croatian old wives’ tales that had been her prior source of reference.
But just about everyone on Six South is sick enough to warrant ICU stays and hallway prayers from family members, and Leja knows this. “They’ll probably give her dialysis to support her kidneys, and she’ll be back on the list soon,” I reassure her.
“Yes, they can do . . . But her family, they are so poor and they can’t to afford sleep in a hotel room in LA, so they must to live in the waiting room! They tell me they do not have a shower in so many days. They also do not have food enough . . .”
Leja explains that the extended family has rotated week to week in a vigil for this relative, who has been hospitalized for over two months now. They all live in northernmost California—about a seven-hour drive from Cedars—so they can’t make the trip daily. They are thankful not to be chased out of the waiting room after hours. “The security guards who walk in the night, I think they are pretend not to see this family sleeping there, could be.”
She’s probably right. I’ve gotten wind of out-of-towners and their families being handled with sensitivity by Justin, Lachalle, and other staff who tend to the sixth floor. It seems a significant percentage of pretransplant patients come here from distant states or even foreign countries, having been sent by their local cardiologists because of Cedars’s unique specialization in the most complex challenges—including dangerous antibodies like mine. Previous transplantation is not the only cause of troublesome antibodies; there are other patient groups who suffer this complication as well, including those who have had blood transfusions and women who are highly sensitized from pregnancies.
During my heart transplant orientation when first arriving at Cedars, I talked with a few of these relocated pretransplant patients who, like me, followed their doctors’ urging and headed to LA. Of course, there was a good deal of commiseration about the financial burden of living in LA for an indefinite period of time. Scott and I have been extremely fortunate in this regard: Scott has been able to continue to work at his job via Skype and conference calls. But many patients I’ve met have had to ask for donations from their communities, Internet crowd-sourcing sites, or Facebook to help finance their long local stays. A couple of them said they might have to sacrifice college tuition for their children to pull this off. And now Leja has discovered the direst situation yet: a family contending with circumstances that has them sleeping in the waiting room for months at a time.
I tell Leja that we need to think about how we might be able to help this family. “Maybe Scott can invite them to the bungalow so they can all take a shower. Or maybe we can buy some sandwiches for lunch tomorrow. I don’t know—it seems too small, but we should do something . . .”
“Yes! We must to do something! I will go tell to Scott now, okay? Then I must to leave for the airport.” Leja was scheduled to fly home that afternoon to see her daughter. “I am sorry, Jill, that I cannot give you break.”
“I don’t need one,” Jill says. “You need to get home for a few days of rest.”
“No! I am not tired! It is okay to me!” She sweeps through the room with purpose, picking up bits of paper from the floor, tidying my night table, and refolding the throw blanket at the foot of my bed. “You have dirty laundry I can to take to bungalow!” she insists. (I don’t, really, but I understand that concrete tasks calm Leja’s nerves.) She opens my closet and holds up various clothing items, sniffing and inspecting. “This jeans? This shirt?”
“Take both, sure, great. Thank you, Leja.”
She stuffs them into a plastic bag. “I go now and I talk with Scott when his business call is end. Bye!” She spins out the door, and the walls seem to exhale with relief.
“A woman on a mission—jeez, it’s exhausting,” Jill says.
“That’s Leja.”
“All that emotion—”
“The family in the hallway must’ve pushed her over the edge. She’s seeing all kinds of sad things here. We all are. I mean, have you noticed there’s a code blue announcement on the loudspeaker every few hours? It’s a death knell. It means heart attack or breathing failure. The sights and sounds of this place can leave your emotions super raw if you let them. So”—I pick up the booklet I placed aside when Leja raced in—“let’s get back to the fun stuff.”
“Perfect,” Jill says, reopening her laptop. “Tell me when you’re done reading.”
I settle into the pages again . . .
Her hair is long and straight and his is short and there is a small bald spot that should not be there because he is only thirty. She is taller than he is when she wears her platform shoes, so on this day she picks low heels . . .
Jill interrupts, “Hey, Ames—do you think it’s allowed? Sleeping or praying or whatever in the waiting room overnight—you think the hospital is okay with that?”
I shrug. “Sometimes when a patient’s condition is so precarious, family visitation rules get stretched really wide—it happened to me at Columbia. And the woman who’s in the ICU here . . . if she’s got failing kidneys and high antibodies, they’ve got to keep the family close, right? Her chances of survival are slim, sad to say it, and I don’t mean to be a pessimist, but . . .”
“I get it. That article you sent me explained things—it’s all pretty grim stuff.” She bites down, and her lower lip disappears beneath her front teeth.
So Jill read it after all . . .
The article—a study published in a prominent medical journal—set out gloomy data on heart transplant mortality (especially retransplants), making clear that even if a patient lives to receive a retransplant, he or she may not survive very long after. Antibody-mediated destruction of the donor heart is the most serious threat to longevity in cases like mine, followed second by the high risk of immunosuppressant-related cancer (a risk that increases exponentially with accumulated years on transplant medications). If first-transplant lifespans tend to max out around ten years, second ones could be half that.
It would take guts to read past the first few lines of bad news like this. And since Jill didn’t comment after receiving my email last week, I’ve had to wonder if maybe she cast it aside.
I wouldn’t have blamed her if she did, considering that the previous article I’d sent her had forced the words assisted suicide in front of her eyes. But that mistake—as I now understand it to be—happened over a month ago, at a time when I felt I had to cry out in order to be understood. It was also before I’d come to carry in my mind (with stomach-churning guilt) the hurt and disappointment conveyed by Jill’s silence the night I returned from my hallway sit-out. Seeing friends’ reactions to my slipups in real time and close proximity these last few weeks has inspired me to try to do better. With every hand that strokes my back, and glance that meets mine with compassion, and voice that assures me, I’m here for you, Amy, I’ve felt myself moving further and further away from the impulse to hoist my See me! flag. Instead, I find myself considering more deeply the women around me, and learning from them by example: just as I am under their watchful care, they deserve to be under mine as well.
So, while I knew this journal article contained bad news that would no doubt be upsetting to Jill, I sent it nevertheless—because my true and deep motivation this time was to share the hard facts, not brandish them. The data-based reality was something we could understand together. Carry the weight of together. Perhaps cry about together.
“Thanks for reading it—I thought you might not want to . . .” I admit to Jill now. “It’s tough stuff to swallow, I know.”
“You’re not kidding.” Jill drops her head and shakes it slowly. “That ICU girl and her family don’t know what they’re up against. It’s what you’re up against, Ames.” She lifts her sorrowful eyes. “There’s no chance of a perfect ending here.”
“Well, there’s a chance at life—for how long, I don’t know. But maybe the antibody treatments will make a difference.” I pause, struck by how unusual it is that I—rather than one of my friends—am the one pointing out a bright spot in the dark now. “I’ve got to keep hope alive, or something like that, right? That’s what a nurse at Columbia said to me once when I was hospitalized with an infection a few months after my first transplant—she actually scolded me: ‘You must have hope! Always hope!’ And I said, ‘Why?’ And you know what? She didn’t have an answer—just ‘You must!’ It meant nothing to me at twenty-five, and I’m not sure it does now.”
“Yeah, hope is a nice concept, but in practice it seems kind of . . . powerless.”
“Which is why I’ve been thinking more about what another Columbia nurse said—she was the one who’d been with me for a bunch of heart biopsies and angiograms. She must have heard that I came out to Cedars for a transplant and got my cell number somehow. So, she called the other day and told me the cath lab staff was praying for me, and I said, ‘Thank you, Margaret, but you know, there are so many people praying, all different faiths, some without any faith at all. Which god, then, is going to hear the prayer? It’ll get too confusing.’”
“Yeah, yeah. It’s like, why should a god listen to it if he knows there might be another god working on it already?”
“That’s the idea. But the nurse, she told me, ‘Don’t worry because all these praying voices, see—they’re storming the universe!’” I lift my hands into the air and wiggle my fingers for effect. “And that’s when miracles happen. Or so she says.”
“Whoa!” Jill grips the arms of her chair. “Storming the universe . . .” Her voice goes high pitch. “I love that!”
“Me too. Me too.” I lift the paper book from my lap again. “Now, back to our masterpiece . . .”
A little while later, Robin surprises us with an early arrival. She didn’t send a text from the airport like the visiting friends who’d come before her. Why impose? was probably Robin’s thinking. She even refused to give Scott her flight information for fear that he would insist on picking her up at the airport. Robin wouldn’t want to be anticipated or fussed over this way—not one bit. For as long as I’ve known her, she’s been intent on making her needs invisible and has done a steady job of it. I assured Scott, “You’ve got to let Robin just do her thing.”
Robin’s thing amounts to pretty much this: sharp mind, fierce independence, and remarkably productive chaos. She careens into my room with shopping bags lining her arms, a purse over one shoulder and a tote bag over the other, managing somehow to pull a loose-wheeled suitcase behind her.
“Amyyyyy . . .” she tolls, low and long like a foghorn. Her face is a combination of measured joy and all-out pathos—a proportional mix that fits well in this setting. But I’ve seen Robin bring this same expression to other circumstances in the past, including exam week during our first year of law school, when the dorm suite she shared with Val and me became a den of toil and tension. The three of us would emerge from our individual rooms, equally bleary-eyed from study, but then Robin would act is if only Val and I were inundated with pages and pages of law cases to review. She would ask how we were doing, and even if we said “Great!” she’d twist her face into a smile-frown, urging, “Well—you hang in there!”
Val and I would look at each other: We should hang in there?
It didn’t make sense. Robin was just as stressed for time as we were, but she never showed it. It wasn’t until second semester that the mechanism of her behavior became clear: Robin was hell-bent on being the absolute lowest maintenance, and this required her to take on a sort of I’m okay—you’re not okay disposition. Once I figured this out, I started saying things in return like, “Well, you hang in there too!”—but this was short-lived because I realized that her intent had actually been kindness all along. As the months raced toward year-end grades and the cutthroat competition that would determine Law Review picks and plum summer jobs, I felt increasingly thankful to come home each day to the sympathies and empathies Robin strewed around our dorm room like flower petals.
And so, today, the concerned tone of her greeting is an echo from the past that stirs my appreciation. “Robin, you’re here! Yay!” I cheer. She lurches toward me, still encumbered by baggage. “Wait, put down your stuff first,” I say, helping her peel off some of the load.
Jill calls out from a chair on other side of the room, “Hi, Robin!”
“Jill, good to see you! Let me just hug Amy for a sec, then I’ll come over there.” She drops the last of her bags and reaches out to me, “Amyyyy! Ohhhh!” Then Jill gets hers, “Jiiiill! Ohhhh!”
They embrace like old friends, but they’re only thinly acquainted. “When was the last time you guys saw each other? At my wedding?” I ask.
“Nah—I think it was at Scott’s fiftieth birthday thing at your house,” Robin says. “So, how’ve you been, Jill?”
“Good! Good! And, you?”
“Great. Great . . .”
Silence.
Long silence.
Jill stretches her arms toward the ceiling and yawns—sort of. Robin looks down at the array of shopping bags on the floor, mulling.
Uh-oh.
I didn’t think about it until now, but this double-visitor arrangement may wind up being awkward. Jill and Robin sure aren’t here to catch up on each other’s lives; they’re here to spend what may be our last hours together, giving their all to our conversations and to the latest task outlined by the spreadsheet friend who wrote the last email. But I have only one back that needs scratching. One minifridge from which to pull a bottle of cold water. And one small space beside my bed, which happens to be big enough to hold only one cot comfortably. But even more than logistics, the introduction of a third friend’s voice into the mix of conversation will likely drain some of the content. I talk with Jill differently than I do Robin. Jill and I will have to hold back on our private banter—not only because it’s unintelligible to others, but also because it would exhibit our extraordinary closeness in a way that might make my friendship with Robin seem less dear. At the same time, the intense, almost scholarly way that Robin and I deconstruct personal issues in our conversations might leave Jill feeling adrift on the surface of things.
This arrangement wasn’t my idea. It was Joy’s. And Lauren’s. And, in most active part, Jill’s. Apparently, there was a caucus among these three—or so Joy told me when she was here last—and they decided to depart from the one-friend-at-a-time format (which figured in Jody and Leja as daytime adjuncts) and pair Jill with Robin, “because, well, your pacing is getting worse and worse, and you have to feel that you can rely completely on the person who’s there with you at night,” Joy insisted. This meant bringing back an experienced spreadsheet friend who’d already visited and making her Robin’s copilot.
I didn’t argue. The nighttime pacing episodes were coming at shorter intervals now, and the duration of each one barely left me minutes to gather myself before the next. And although the group emails provided Robin with the basic protocol for back scratching and foot rubbing through my pain, it was the personal element added by each visiting friend, really, that worked the caring magic that brought relief—not just from physical anguish, but from the sadness and fear and despair that worsened with each passing day. Jill’s flair was humor and unfailing empathy. Lauren’s was depth of thought. Joy’s was full-on engagement. Val’s was compassion. Though there were numerous possibilities, I wasn’t sure yet what Robin’s flair would be.
Robin has always been a whirling wonder. From law school to marriage to motherhood to work life, she’s seemed a bit slapdash at times—and yet has managed to produce impressive results that dazzle me. She has three gleaming, successful children and a happy husband on top of an attention-devouring and hour-consuming high-level VP/general counsel position at a major pharmaceutical company. Somehow she still manages to bring full energy to all the varsity ice hockey games, back-to-school nights, birthday parties, and evening walks with the dog. Robin races from one vital task to the next, improvising brilliantly, never in obvious frenzy but often with wide, darting eyes that are a cross between high energy and the panic of an unconquerable to-do list. (She conquers it every time, though.)
Robin throws herself into the task at hand now, seizing a plastic shopping bag from the floor and thrusting it toward me. “Here. I brought you a bunch of stuff. Take a look . . .”
I retrieve a few small items from inside the bag—lip gloss, a tube of body cream, a sample-size perfume vial, and a jar of face moisturizer. “Oh, wow, so thoughtful of you . . .” I say, reaching in for more, and then more; the bottles and tubes and jars keep on coming. “Look at all this!”
“Yeah—I just grabbed it all from my drawer. It’s stuff from I don’t know when. Gifts, samples from cosmetic counters . . .” She points to two green jars on my lap. “I think those were gifts for my twentieth wedding anniversary . . .”
That was five years ago. I smile and make a note to self: Toss green jars.
Robin picks up a tube, screws off the cap, and sniffs. “This one’s nice.” She passes it under my nose.
“Pretty!” I say, and then take hold and try to empty a bit onto the back of my hand—squeeze, squeeze, squeeze—but nothing comes out.
Robin notices my confusion. “Yeah, I have no idea, sorry. You know me—I was working late every night this week, and then I rushed this morning to make my flight . . .”
“No problem! There’s plenty of good stuff to choose from in here . . .” I look down at the random accumulation in my lap, considering how the potential for germs is fairly high. When I look up again, Robin is holding a light blue shopping bag in front of my face. “Now what’s this?” I recognize the name of the store printed in white.
“Open it.”
Cotton pajama bottoms in a cool gray leopard-print, plus a tank top and silky soft robe—beautiful, stylish, thoughtful, and brand-new! I knew how difficult it must have been for Robin to take the time from her frenzied work/home life to get herself to a fancy little boutique just to pick out some sleepwear.
“Where’d you get that?” Even high-styled Jill is intrigued. She reaches for the robe and swoons over its buttery softness.
“There’s a little place in Larchmont . . .”
“Is it that bra store, or . . .”
“No, that’s across the street. It’s actually a gift store that’s . . .”
Off they go, chatting about suburban shopping spots and how the color gray is such an adorable choice for leopard print.
I lie back against the bed pillows and smile.
Scott has taken Jill and Robin to lunch. It’s another California blue-sky day and I insisted that they all get out and enjoy a bit. “Food tastes better outside hospital walls—and I’m fine, so please, go breathe some air.”
“I can have lunch here with you and the girls can go by themselves,” Scott offered. But I declined. So now I’m here alone—which feels odd because I’ve had constant company for so many weeks now. “We’ll be back in half an hour, just half an hour,” Scott assured me.
I told him to take his time. “Nothing’s going on. I think I’ll read.”
But I find myself just sitting in the stillness, observing. There’s so much purple in here now, and bright green. Peace signs and tie-dyes and horizontal strips of chalkboard (Friends on duty: Jill and Robin, it reads today). Busy walls, busy windows, busy bed pillows. Even in the silence, I sense the clamor of it. I close my eyes and listen to the street sounds through the crack of open window that was Val’s parting gift.
The phone rings. Not my cell, but the old-fashioned push-button hospital phone that sits on my night table.
“Hello?”
“Hi, Amy, it’s Emily . . .” I lose my breath—Emily is the transplant coordinator who manages donor heart offers for Cedars patients. “We might . . . have a heart for you . . .” She’s speaking so carefully, so damn slowly. “. . . but . . .”
Ah, the glitch: There’s another patient who is first in line for this heart, Emily tells me. I’m the fallback. More specifically, UNOS, the organization that maintains the national transplant waiting lists as well as the computer program that determines the appropriate heart recipient (i.e., the longest-waiting, sickest patient who is a blood-type and antibody match in the region, usually), has me at number two.
“We need to prepare you as if this is a go,” Emily says. “’Cause sometimes, the heart winds up being too big or too small for the first on the list, and it goes to the second. Or a bunch of other things can happen. So don’t eat anything—you’ve got to have an empty belly if there’s a surgery. And I’m going to send someone from the team to take lots of blood for the cross-match, okay? So you just sit tight. I’m excited for you, Amy!”
“Could this really be it?” I ask, feeling my breath begin to quicken.
“It could. I’ve seen it happen before.”
“Thank you, Emily! Thank you!” I hang up the phone.
I’m panting, and my excitement mixes with awe and wonder. The one time I’m alone in the room—it’s only been about ten minutes since Scott and the girls left—I get a heart offer!
Well, almost an offer.
I call Scott’s cell. He answers and I burst into tears. “Emily called! I might have a heart! Come back!” Minutes later, Scott, Jill, and Robin rush through my doorway, out of breath from running. They dive onto my bed, tug at my arms with excitement. “What did you hear? Start at the beginning . . . word for word!”
The joyous roughhousing has me giggling, but I gather myself in spite of it so I can tell them, precisely, that I am second in line. “There’s someone sicker than I am,” I explain, “so they get it first.” But the fact that I’m being prepped for surgery means that there’s a real chance that the heart might wind up mine. The blood cross-match, I tell them, is even more encouraging. This means that my blood will be drawn here at Cedars and then transported to the donor hospital, “so that my blood can be mixed with the donor’s to see if we sort of get along quietly, or if there’s a bad reaction.”
“Oh my God!” Jill beams. “This could really happen!”
“Yeah, and I’m going to have to shower with this special antibacterial soap—oh, and I’m going to want to wash my hair and make it nice since I won’t be washing it for a week after surgery, probably . . .”
Scott is pacing with excitement. Robin is bouncing in her chair. Jill takes out her cell phone and asks, “Can I text the girls?”
“Um . . . I don’t know, maybe not just yet,” Scott says. “We don’t know if this is really happening.”
“Well, the prep is really happening,” I say. “We should just tell them what the situation is, right? Scott, will you call my parents, please, and I’ll call—”
“Hi there, everybody!” Lachalle walks in with a squeeze bottle in hand, smiling bright. “I heard you’re number two. This could be your night—how about that now, how about that? So, you need to shower with this special soap—hair, body, everything.”
“Can she use conditioner too?” Jill asks.
“Ha-ha, yeah, I think that would be all right.”
“I want to be beautiful when I get my new heart!” I bubble. This is the happiest day—well, really the only happy day—in my hospital room so far.
“I like the attitude you’ve got there!” Lachalle says. “You go ahead and shower because they’re coming to take your blood soon—ah, wait, here they are now . . .” She steps aside to make room for two very serious-looking nurses whom I’ve never seen before.
One of them has a harsh European accent. “We must hurry-hurry,” she tells me, while the other nurse secures a strap around my upper arm. One, two, three—the needle is in and my blood begins to flow into what seems like endless vials. I look away from the sight, but I can hear the click-clack of blood tubes as they fill and get traded out for the next. The hurry-hurry nurse huffs while glancing nervously at her watch, “The helicopter, it is waiting on the roof. I will run there with this blood when we are done.”
“Helicopter?” I say.
“To take your blood to the hospital where the donor is. For cross-match. Must get it there very, very quick.”
“Where’s the hospital?”
“Can I tell her?” she asks the kinder nurse who’s drawing my blood.
“Yes.”
“San Diego.”
A few hours’ drive would take too long, apparently.
Click-clack-click-clack-click-clack—the nurse gathers the tubes before the other nurse has pulled the needle from my arm. “I go now!” she announces, and runs from the room with a plastic bag filled to the brim.
“That was my favorite blood draw ever!” I joke. Everyone laughs. “Shower time!”
“Want me to help?” Jill asks.
“Sure, thanks.” I start pulling off EKG leads from my chest.
“Let me help with the ones in the back,” Robin says, taking the initiative and reaching under my T-shirt in search of them.
Just then, there’s a loud whirring noise from outside. Scott, who’s closest to the window and talking into his cell phone, points excitedly at the sky. Robin, Jill, and I crowd around him to get a look—it’s a helicopter lifting off Cedars’s roof.
“There goes my blood!”
“That’s crazy! They were in here one minute ago!” Jill gawks.
“A-mazing!” Robin gushes.
We all come together in a big hug, surrounded by the sound of hope taking to the sky.
Minutes later, I toddle cheerfully to the bathroom for my antibacterial shower. I tell Jill I’ll leave the door open and call her if I need help washing my hair. “All right, I’ll do some push-ups and bicep curls to get ready for that—no kidding! Has anyone got a Red Bull?” She makes a he-man pose, flexing her muscles.
I’m going to try and do this myself this time, I decide, stepping into the shower. My strategy is to wash my hair first, before I get too weak. But within seconds under the hot water, I need to sit down on the shower bench. And after just a few rubs of shampoo against the surface of my hair—“Jill!” She pops into the bathroom at once. “I need help. Sorry,” I tell her.
“Don’t be silly.” She takes the handheld shower attachment from me and starts to rinse out my hair, not realizing that I haven’t fully shampooed it yet.
When I drop my chin to my chest, my eyes fall upon my grossly swollen feet, which are now dark blue, my distended belly, the transplant scar that runs from just above my navel to the base of my collarbone, and my still-fresh mastectomy sutures and tiny breast implants. As my eyes take in my own naked body, I’m suddenly feeling frantic and desperate to cover up, cover up! Everything is exposed. Not merely my surgical scars and my aging skin and my unshaven legs . . . but, rather, my . . . misfortune. I feel my body go rigid as she continues to rinse my hair. How excruciatingly self-conscious I am of its full-frontal view right this moment—I don’t want Jill to see, I don’t want her to see.
I take a deep breath and try to calm myself with a silent question: Would I feel this way if Jill were my sister?
Yes—because it’s not so much embarrassment that makes me want to run for towel cover. It’s more the naked exhibition of my nearness to death. From head to toe, there’s no hiding the clear markings of what’s ugly about heart transplants: they don’t last as long as we hope they do, and if their years don’t kill you with vasculopathy, their required medicines will slay you with cancer.
And here’s Jill, my tireless friend who’s working so hard—Look at her with those dark circles under her eyes, so worn down by the days and nights in this hospital room. She’s doing all this to help me get to transplant number two? What a sad and ridiculous enterprise. Even if I am fortunate enough to receive a matching donor heart, the question will remain: Was it worth the toil of all of us? If my friends come to see that retransplant returns me to the precarious, ill state of health that characterized my last twenty-five years—or worse—will we all agree that this is too thin a victory, given the intensity of our effort?
These questions do not occur to Jill right now, I’m sure, no matter her exhaustion. It’s so easy to get lost in the chase when the goal is life itself. It blinds you to the quality of that life.
“Are you all right?” she asks, noticing my sudden sadness.
“Soap in my eyes . . .”
“Oh, sorry about that. Here’s a dry washcloth . . .” I dab my face and pop open the squeeze bottle of antibacterial body wash. “This could be the last shower you take with this heart—how about that?”
“How about that,” I say.
After a stressful evening with no news about the San Diego heart, Jill pushes her cot to the wall across the room, just beneath the giant collage of selfies, while Robin wedges hers between my bed and the window. They’ve got their laptops out now—Jill writes the nightly email and Robin does some work. I sit quietly, feeling especially cleaned up after my sudsy shower and all the beautification that followed. Jill and Robin sat me in a chair and blow-dried my hair, leaving it surgery-ready and prettier than it has been in weeks. Then they took time picking out which pajamas would bring us luck tonight (landing upon the pink, fine cotton ones that Lauren brought me but I haven’t worn yet), and plucking stray hairs from my eyebrows. Jill filed my nails and Robin rubbed cream into the bottoms of my feet—primping and coiffing every possible part of me as if I’d been granted an audience before the wonderful Wizard of Oz. But it’s almost eleven o’clock now, and our excitement is dissolving fast. “It shouldn’t be taking this long,” I say.
Robin closes her laptop and reaches out to me. Her cot is close by, and it feels like we’re sharing a queen-size bed. “You’re probably right. But it’s not over until it’s over.” We hold hands and sit in silence for a few minutes.
The phone on my night table rings.
“Hello?”
It’s Emily. She tells me things aren’t looking good, but there’s still a chance because there is no indication on the computer program that the first patient actually took the heart. The offer, then, is still considered open until UNOS marks it as offer accepted. “So why don’t you go ahead and eat something if you want, because even if the heart winds up being yours, the surgery won’t be until morning and that’s plenty of time for your stomach to empty.”
I take this as a bad sign. I know enough about surgeries to know that chances are never taken with food ingestion. “Emily, do you really think I’ve got a shot at this heart at this point?”
“I’ll be honest with you, it is very strange that in ten hours there is not an updated status on the computer. You almost have to assume it’s a glitch and the first patient on the list accepted the heart offer.”
“What should I be thinking, then?”
“Sweetie, I think you should have some dinner—you must be really hungry. Order in a pizza, okay? Or maybe the nurse can bring you some apple sauce and graham crackers.”
“Thanks, Emily.” I hang up crying. Jill and Robin rush over and sit beside me on the bed. Each one of them takes a hand.
It’s okay . . .
It wasn’t your time . . .
It’ll happen for you soon . . .
You’ll be number one for the next heart . . .
I fall back against the bed pillows. “Robin, can you please get me a different pair of pajamas. These feel too happy.”
“Yes, of course.”
Everyone is wiping away tears. The room sinks to a new low of despair. “I just want to go to sleep and not wake up,” I say, slipping the replacement pajama shirt over my head. Robin and Jill glance at each other. No response. “Never mind the pants,” I tell Robin. “I don’t have energy for them. I’m going to bed, ladies. This is just too damn sad.”
Robin and Jill scurry back to their cots—All right . . . good night, then . . . we’re here for you when you need us . . . and we’ll turn off the lights now . . . no more computers . . . let’s all get some sleep . . . tough day . . .
I hear Jill settling under the covers and Robin fluffing her pillow before lying down. They don’t need to coordinate anything because earlier today they worked out an arrangement for tending to my nightlong pacemaker firings. Jill wanted to alternate, but Robin insisted that she take over since Jill had already racked up a few sleepless nights here. But I’m thinking I may not need either Jill or Robin tonight, since I expect I’ll be wide-awake, racked with frustration and grief—and if I don’t let my body relax and slip into sleep, there’s a chance my pulse won’t drop and my pacemaker won’t fire.
Yeah, I think I’ll just stay up all night, damn it . . .
After a few minutes, Robin’s arm shoots up and then lands on my bed. “You asleep?” she whispers.
I turn on my right side to face her. “No. Too upset,” I whisper back.
Robin slides to the edge of her cot so we can talk quietly without waking Jill. “I’m so angry about what happened today,” she tells me. “I think it’s cruel—to get your hopes up like that and then crash them to the ground. It’s horrible.”
“It’s part of the transplant process . . .”
“It’s inhuman! You’re waiting and waiting, and they tell you, Yeah, maybe we’re going to save your life tonight—and then they don’t. Unbelievable. Unthinkable!”
I lace my fingers together and bring them to my lips, pausing. Robin’s fervor is escalating, but I’m feeling more and more calm—almost naturally inclined to apply rational thought, just like Lauren would. “There have to be backups for the patient who’s first on the list. A donor heart can’t just sit around waiting for a taker . . .”
“There’s got to be a way to protect patients from this kind of disappointment. It’s wrong! It’s insane! How can they do this to you?” She brings her hand to her cheek and shifts her eyes down mournfully. “You’ve been through so much. I can’t fathom why they would . . .”
I raise my open palms into the air. “Okay, okay. I hear ya, Robin. But it is what it is.” I’ve got to stop her right here. I feel shattered by this disappointment, sure, but she is getting upset over a UNOS procedure that I understand and agree with. It is crucial that one or two patients be made alternates or else the donor heart might wind up being wasted, which would be a tragedy not just for one but for many. “I’m not angry,” I assure Robin. “I just feel like this missed heart is the knockout punch, you know? I can’t hold myself up anymore.”
There—I said it out loud: I can’t anymore.
The sound of it makes my body go limp. As sorrowful as this declaration is, expressing it to Robin brings on a feeling of relief. I’ve finally summed up in words the exhaustion and pain that have been building these last weeks.
Robin lights up with energy. “All right! So that’s why we’re here! Jill—well, she leaves in the morning—and now me. Let me hold you up.”
No, no, no—that’s not what I need . . .
My reaction is instant and powerful, but I keep quiet. Contained. I remember what Val said about sparing loved ones my quick, sharp reactions. And in this moment, at least, I’m able to heed it.
What do you need, Amy? I demand from myself, silently and without fanfare. What would hold you up right now?
I can’t think of one thing. I reflect on these past few weeks. Pacemaker firings have taken over not just my nights but also my days—in the form of nauseated exhaustion and heavy-headed haziness. For the first time in all my transplant years, I have started to wonder: Will my mind give out on me too? I’ve had to make some degree of peace with watching my body deteriorate, deprived of oxygen and kidney function as my heart plunges deeper into failure. But now my brain is on the edge—I can feel it. Line after line has disappeared from my poem repertoire. Casey’s social security number escapes me these days. I’ve had to abandon the remaining episodes of Scandal that Joy downloaded for me—no matter how I try and focus, I can’t follow the story line from scene to scene anymore. I even had to fill out a form the other day and got stuck on whether my last name is spelled with an ei or ie (I put down whatever seemed more likely to me at the moment—and realized later that I’d guessed wrong).
I fear that before too long, insomnia combined with the physical pain is going to rob me of the thinking self that has been my steady constant—and I’m desperate to keep this from happening. Survival all these transplant years has depended on my attentiveness to every medical detail. My vigilance has literally saved me from errors and oversights. And now I’m watching myself lose control, my awareness slip away . . .
How can I let anything hold me up? I can’t bear an indefinite future in this debilitated state.
Robin herself just bemoaned the endless waiting and uncertainty. She called it inhuman. I agree.
I need to put a limit on it.
I need to know there is a time after which there will be no more fiery black agony burning me alive. And I need to know exactly when this will be. Only then can I keep going.
Yes, this is what would hold me up: a limit on the number of days I must continue on like this.
This idea, I realize, is grounded not just in desperation. I recall at once having read in college about fighter pilots in World War II who experienced psychological breakdowns when observing the daily death toll of fellow airmen. A program was put in place whereby, at the outset, all pilots would be informed of the total number of missions they would be flying. They were assured that after completion they could have a post on the ground indefinitely, if they wished, free from the skies that terrorized them so. The result was an easing of distress and a sharp decrease in the number of pilots deemed mentally unfit to fly. The mission limit gave them something to hold onto.
It seems to me this is exactly what I need as well: a specific end point. Friends can’t be part of this. I am going to have to do it myself.
Robin notices my mind drifting and raises her voice a bit. “Look—I know you hate taking the help, but I’m so glad to be here for you. And you know, I . . . I wasn’t there last time, and I feel terrible about that.”
I hear her concerns, but without focus. I’ve already begun to muse about how many days—or missions, as I could think of them—I might assign to myself. I muster a quick response, “Robin, it’s okay. We were young and—”
But she cuts me off, begging my full attention. “I’ve asked myself, was I not there for your first transplant because I was stupid and self-absorbed? Or did I just not know how to do it, how to be around a sick person? Our parents taught us how to act at our grandparents’ funerals, that’s all.”
“Well, Val admitted that she had no idea what to do for sick people and their families until she moved to Durham and Sam had that big surgery—’cause all of a sudden people were showing up to do her laundry and fill her refrigerator with groceries and homemade casseroles. Life teaches us. We learn.”
“I’ve learned from you. From your book. I read Sick Girl and it crushed me, because I was so absent during that time. And I realized, my gosh, I was such a bad friend! We all were. Why wasn’t I there for you?”
It was a forthright, painstakingly candid memoir, Sick Girl—I wrote it many years ago about my first transplant and how it felt to live sick and scared when my friends, family, and even doctors expected a simple transplant miracle from me. I didn’t describe my friends as sources of support in the book because my relationship with Scott—our courtship, followed by his marriage proposal in the ICU, and then our wedding one year later—was the steadfast center of my universe. If Robin saw herself missing from the pages of my book, she had nothing to feel guilty about.
I assure her that I never for a moment thought she was a bad friend, and besides, “Twenty-five is a long way from fifty.”
She wags her finger in the air. “Nah . . . don’t let me off the hook. I’ve felt this for a while—that I need to step up. So when the spreadsheet came out, I said, I’m not going to make that mistake again! I was determined to show how much I love you.”
“Aw, Robin—I know you love me . . .”
“It’s more than that,” she snaps, her voice cracking now. “We’ve reached a part of our lives where we want to own our choices and be proud of ourselves—that’s how I see it. We can be better women if we choose to be. And I choose to be here—even if it makes no difference to you. It makes a difference to me. This is so important, oh gosh . . .”
I’ve never seen her so emotional. Our talks are often characterized by frankness and deep introspection, but Robin’s words here seem to be moving toward an unburdening.
She rolls her eyes to the ceiling, gathering her thoughts before continuing. “When we surround ourselves with strong, smart women who have the courage to dig deep into the big questions of life, it’s easier to reckon with our own mortality, right? We’re fifty. Headed down the other side of the hill. People around us are getting sick—it’s not just you anymore, Ame. Some of our parents are dying or dead . . .”
I nod. “Your mom . . .” Robin’s mother passed away just a couple of months ago after a long, terrible illness.
“I didn’t think I could bear the smell of another hospital after those last months with her. Even stepping through Cedars’s doors this morning was . . . Well, put it this way—I wouldn’t do this for many people, Ames . . .”
Just then the phone rings. I grab it. “Yes, Emily. Oh, okay. All right. Thanks for letting me know.” By the time I hang up, both Jill and Robin are standing by my bed. “That’s the end, guys. The other patient got the heart.”
The mood is just as somber when Dr. Kobashigawa comes in the next morning. Jill has already left for the airport after a tearful good-bye, and Scott is stretched out on her cot now, grabbing a few extra minutes of sleep.
“Morning, morning,” Dr. Kobashigawa says, pausing in the doorway longer than usual for his pumps of Purell. He rubs his hands together and then shakes ours. “All right, all right.” I don’t sit up in bed to greet him. I haven’t even changed out of pajamas and into street clothes, or freshened up like I always do before his arrival. “So this heart offer last night, it didn’t make its way to you,” he acknowledges.
“That was very hard for Amy, Dr. Kobashigawa,” Scott says.
The doctor points to the chair next to Robin. “May I?”
She quakes at his asking. “Yes, of course, please, please, sit.”
“You know—things work out. They work out, yes, yes, they do,” he says, with a new kind of twinkle in his eye. “You see, that heart last night didn’t get transplanted after all. No. What happened was—and I’ll tell you this without getting too technical—the heart exploded when the surgeon tried to take it out of the donor. It’s rare, but it happens.”
Robin and Scott gasp in unison. “Exploded? What!”
I stay silent.
“Amy, do you care to explain a little more about it to our novices here?”
Ooh, I could almost give in. He delivers this invitation with an I know you so well smile that has eased me through many trying moments in this hospital room, but . . .
“No thanks.”
“Well. Let’s just say that this heart would not have been good for Amy, or for anyone. So, it’s on to the next!” He lifts his voice into the slightly raspy, charming range where everything sounds hopeful and so much easier to swallow. “Heyyy, you came up number two last night—this is good! You’re going to start getting some heart offers now—yeahhh.”
“But they have to match me,” I say quietly. “And that’s a near impossibility.”
“Oh, we’ve had patients with higher antibodies than you, and they hung in there until—”
“I can’t anymore.”
Scott comes to sit beside me on the bed and takes my hand. “Amy’s feeling like there’s no hope. She’s been waiting for a while now as a 1A, and it just seems—”
“What happens if I turn off my pacemaker? Those pacemaker guys can come with their magic suitcase and just switch it off, right?” I’m referring to the interventional cardiology team that has stopped by a few times to adjust my pacing settings using a magnet that communicates with a device nestled in an attaché case.
Scott squeezes my hand.
“You need the pacemaker to keep your pulse above eighty. I wouldn’t advise turning it off,” Dr. Kobashigawa answers.
“Dr. K, the pain came every fifteen minutes last night. Every fifteen minutes. And it lasted for about ten . . .”
“It was brutal,” Robin adds with emphasis. She was my unfailing support all night, standing right beside me through the hours—extraordinarily focused, tender, and helpful. And now she’s stepping up as my witness and advocate, not the least bit cowed by the presence of a doctor who, as far as she can tell, might not be inclined to include an unknown third party in the discussion. She continues, “Amy had to stand by the window most of the night, because every time she lay down, her pulse dropped and the pacemaker fired again.”
Dr. Kobashigawa brings his hands together, nods thoughtfully, and sighs. “Yes, I see the increased frequency of episodes on the telemetry report from overnight. Your heart is, ah, barely holding on at this time. You need that pacemaker—though I am sorry for the pain it causes you. I do worry that at some point soon, it might not be enough to keep your pulse in a safe zone.”
“I would like to turn it off,” I say, calm and certain.
Scott shifts nervously on the bed. “Amy, come on . . .”
I look directly into the doctor’s eyes. “I thought about it a lot last night, standing on my giant swollen feet for five hours. I have a right to refuse treatment, and this is what I want.”
“What will happen, Dr. Kobashigawa, if Amy shuts off her pacemaker?”
“She will go into cardiogenic shock before too long. Her vital organs will fail. She’ll end up in a coma . . .”
Scott bites his lip and turns his head toward the window.
“I’ll die,” I say.
“Ho—not that easy. It will not be a comfortable death,” Dr. Kobashigawa advises. He’s dropped his chin into his hand, his eyes wide. It’s the first time I’ve seen him worried. “Amy, Amy . . . you have a lot to live for—”
“Please. Don’t go into that speech. I’ve heard it too many times,” I say politely, but with resolve. “Believe me, I’m so grateful for all the good I have in my life. I don’t want to leave Scott or my son—or my friends or my family. I want to live! You see that I’ve fought for life these last twenty-five years. But I’m not a masochist. Turning off my pacemaker . . . I see this as an act of love and caring—for myself. I think I don’t deserve to suffer like this. It’s too much pain with too little chance of a good outcome.”
“You’re 1A now, there will be offers . . .”
“Maybe. Maybe not. But—I’ve told you this before, Dr. Kobashigawa—I’m not twenty-five years old this time around. I’m fifty. I had time with Scott . . . so much more time than we were supposed to have. I raised my son . . . I was slotted to die when he was in kindergarten. I finished law school. I wrote a book. I got to grow up. I even got to grow a little bit old. It’s okay if I have to let it go now—”
“You don’t have to let it go.”
“I do.” I consider telling him about the fighter pilots. But—no.
“Well, it is your choice to refuse treatment. You can have your pacemaker turned off, if that’s what you eventually decide.”
“I’ve already decided,” I say. He’s forgetting that I’ve had twenty-five years of thought that make this decision an instantaneous one for me.
Dr. Kobashigawa shifts his chin to his other hand and exhales long and woeful. “I need you to do something for me first, please.” He grips either side of his chair and leans toward me. “Give it thirty days. I say this because when your 1A Exception was approved, you were granted thirty days at the top of the list. Usually, it’s only about two weeks. Now, I don’t know why you got the thirty, but I think it’s too fortunate to not see it through.”
Thirty days . . . hmmm. Sounds fishy.
I do a quick calculation in my mind—I remember the date of my 1A approval. It was seventeen days ago. And I learned while serving on the UNOS board that these exceptions are granted for fourteen days and roll into another fourteen if the renewal request is submitted promptly and continues to meet all required medical criteria. It seems to me I wasn’t granted thirty days at once; rather, I was granted two consecutive fourteen-day 1A Exception periods. Nothing notable about that, except for Dr. Kobashigawa’s slight exaggeration that rounded twenty-eight days up to thirty.
“Thirty days,” Dr. Kobashigawa says again, this time with that inviting inflection in his voice. “I think it’s fate. I really do.” He takes my hand in his. “Will you give me the thirty?”
His invoking fate here doesn’t convince me. But there is something about this doctor that makes me want to follow wherever he leads—even into fantasyland for a little while. “Okay.”
He shakes hands all around and leaves. Scott follows him into the hall.
I open my night table drawer and take out the large pad of drawing paper—the same one I used for the Yeats quote that’s set among the array of selfies. I do some quick math in my head—thirty days, seventeen of them passed already since my 1A Exception was granted. That makes thirteen days left to fulfill my promise to Dr. K. I grab a red Magic Marker and draw a large circle with a bold number thirteen inside.
I tear off a piece of medical tape, walk to the wall directly across from my bed, and hang my creation for all to see. “The daily countdown,” I declare, turning my head to look at Robin squarely.
Her eyes shoot open. “So, you’re going to put it right out there, huh?”
“Sure am.”
If only Jill were here—I might have set the number inside a big blue triangle instead. She would understand why.
From: Robin Adelson
Subject: Update
Date: April 29, 2014 at 12:28 PM
To: Lauren Steale, Valerie Yablon, Jane Keller, Joy Ceterra, Ann Burrell, Jody Solomon, Leja Babic, Jill Dawson
Hi Everyone,
Amy was very despondent last night and this morning. She was determined not to endure any more nights (or as few as possible). She spent most of the night walking the halls and staring out the window, as this kept her pulse from dropping too low and the pacemaker kicking in with pain. The nights are long and tough and, understandably, she needs a lot of support.
Dr. K came by this morning and tried to lift her spirits. The heart from last night “exploded” and/or “collapsed,” as he said. So no one was able to use it. What a cruel feeling though to know a heart was finally available but not good enough. Ugh . . .
This is SO hard on Amy and Scott—can only hope that something good breaks her way really soon.
xo
* * *
I’d just twisted my hair into a towel turban and lifted my face to look in the mirror when the first thought hit me: What is being alive anyway? I ignored it and reached for the toothpaste, but then a second thought popped up: What happens when I’m not alive?
Then came a deeper, more disturbing one: What happens when there’s no me?
Followed immediately by a fourth that struck me as the creepiest: If there’s no me, then I’m not in my head anymore—which means I’ll never have another thought!
I put down my toothbrush and shuddered. “Stop, stop, stop,” I chanted, and then trilled a few la-la-la-las in a row to unstick my mind. But it didn’t work. My head went hollow and I had the scary sense that its contents—that the contents of all of me, really—were nothing—NOTHING!—and had always been nothing, except my thoughts.
I felt I’d discovered a terrible secret about life that I wasn’t supposed to know yet: that we’re just thoughts in a body—that’s all.
So the last and final thought I’ll ever have, then, will come right before I die, and after that I’ll never think anything ever again. That’s what death is.
Stop! Stop! La-la-la-la . . .
I tossed the wet towel from my head, pulled on my foam headphones, and pressed play on my Sony Walkman. A Billy Joel cassette started to roll.
It was 1979. I was sixteen and perfectly healthy.