Marrow (13 page)

Now the therapist asks me to give my stem cells some direction—a prayer, or marching orders, or whatever I want to call it. I close my eyes again, and I see millions of cells waiting to fulfill their purpose. I sit up tall. I feel like one of those maple trees Maggie loves so much. A prayer appears fully formed, simple and true. I say it out loud: “
May my cells flow like maple sap on a warm spring morning. May they give you sweet life, Maggie. May they keep you with us for many years to come.
”

“Maggie?” the therapist asks. “Do you have a prayer for the transplant?”

“It's not a prayer. I don't do prayers,” Maggie says. “It's more like a wedding vow. The wedding of Maggie-Liz.
I vow to make my body the field beyond wrongdoing and rightdoing so that your cells know they are home.
”

The therapist rereads the questions I had given him at the start of the session.

“So, let's see if there's anything left for us to do here.” He reads the paper aloud:

Here are things I have done that may have hurt you. Will you forgive me?

Here are ways I have felt hurt by you. Can I safely tell you my truth?

Can I be myself with you?

Will you accept me?

Will you love me?

Will you make a place for me, all the way down to your marrow?

“Check, check, check,” Maggie says.

“Amen, sisters of the revolution,” I add.

field notes
•
may 31

liz is 2 years older than i am. we of the 4 sisters are the closest in age, but my memories are of constant fighting as children, unfairly favorable treatment of her by my mother, and even though we shared similar experiences in highschool and college (we were sisters of the revolution: sex, drugs and rock n roll) and then both got married and had babies around the same time, she went a spiritual route and i went back to the land. we grew farther apart than we were as kids. i lived in rural poverty and she didn't. i felt judged for not being spiritual, even though i smirked at her lifestyle. little did i know that she felt judged by me and wanted desperately to be my friend. and then she did the absolute worst thing my mother's daughter could do; she got divorced. now her badness was confirmed. and i could still be the good girl. that was the story. but today we changed it. liz asked me pre transplant if i would go with her to a therapist to clear away any obstacles that could impede the acceptance of her stem cells. i liked that idea. i loved it. and so today we went to a therapist and met with him for several hours. what went on in that room will get covered in chemobrain cobwebs soon, so i want to write it down and remember it forever. it showed me things about myself, and things about liz, and rearranged the furniture of our relationship. it cemented our deepest love for each other, and strengthened our commitment to move forward with mutual love and support.

THAT NIGHT, I LIE IN
bed in Maggie and Oliver's guest room. They have gone to sleep. I toss around in the dark, thinking about the therapy session, feeling an ache in my bones as the stem cell production accelerates. I don't know if I'm restless because I'm thinking about the stories we unearthed in the session or because my cells are pushing their way out of my bones. The processes seem similar: stimulating growth even if it's painful, mining the deep and hidden places for healing, offering ourselves to each other as gifts of love.

The therapy session today was unlike any I've experienced before. We dug up the past, kept what we loved, and dropped what we didn't. Just like that. It was more like what people who have had near-death experiences report—where, in the process of dying, one's past is vividly reexperienced from a higher perspective, and suddenly the whole meaning and purpose of a lifetime is revealed.

For years after the publication of my second book,
Broken Open
, I led workshops for people who were going through difficult times of change and loss. One of the exercises I concocted was a simulated experience of dying. I led this exercise many times—for small and large groups—sometimes ten people, sometimes three hundred. All sorts of people took the workshop: those suffering from trauma or illness and those dealing with the mundane concerns of daily life, including the terminal condition of being human. I'd
have everyone spread out around the room and lie down. I'd turn the lights down and the music on, and lead the group in an hour-long death meditation.

First we'd imagine the reason and time and place of death, then we'd relax our hold on the body and personality, and then we'd look back over the events and people and lessons gleaned over a lifetime. And finally, we would move into whatever concept we have of an afterlife (including no concept at all). At the end of the experience I'd guide people back into the body, back into life. We'd sit up, return to our chairs, and write a letter to ourselves, with instructions on how to live from now on.

Before entering into the death meditation, I would always ask if anyone in the room had had a clinical near-death experience where, due to an accident or heart attack or other trauma, they were pronounced dead but were later revived. And almost always a few people in the group would raise their hands and describe the experience. The stories were eerily similar—not only in the classic details of the tunnel, and the bright light, and the sense of swimming in a sea of unconditional love, but also in the way their perspectives changed afterwards. They came back from the other world wanting to release past grudges and wounds because they had seen the reason behind events in their lives. They understood now that everything could be used as grist for the mill of growth and gratitude, and that the only purpose of life is to shine the light you were given.

All sorts of people reported this—the people you'd imagine, like the woman wearing a purple dress and a crystal necklace, or the minister who described seeing Jesus on the other side. But more often than not, I would be surprised by the sorts of people who re
counted near-death experiences: a New York City cop; a corporate lawyer; a cynical hipster who had never believed in anything until he had a brain aneurysm, was pronounced dead, but came back to life changed forever. All those who had a near-death experience reported the same change: the commitment not to waste their lives in complaint or regret, but rather to approach each day, every endeavor, and all their relationships with a fearless and faithful attitude. On the other side, these people had encountered their own soul, had seen its goodness and its purpose, and returned wanting to speak its truth.

At the end of the death meditation in my classes, many people also reported a change of perspective and a desire to live with less fear and more gratitude. An oft-repeated insight was how unnecessary and harmful it was to hold on to grudges. Many people left the class planning to clean up their relationships, to tell some unexpressed truths, to sow the seeds of forgiveness and peace.

Back when I first had the idea to clean up my relationship with Maggie for the sake of the transplant, I began noticing how other relationships of mine could also use some dusting off. I'd be with someone at work or home, and just below the surface I'd sense truths clamoring for attention. And rising to meet the clamoring were some questions: Do I have to clear up everything with everyone? That could become a full-time job. What issues are better left unexpressed? Is it always worth it to risk going deeper?

Tonight, lying in bed, feeling the ache in my bones, I think about other people in my life—my husband, my kids, my other two sisters. As the night goes on, the aching pressure in my bones intensifies. The hospital has given me prescription painkillers, but I don't reach for them. I want to feel what is happening. I want to
pay attention to the bone aches, as if they are messages from the stem cells as they mobilize and prepare for action. I don't want my fear of pain to shut down the cells' productivity.

And I want to pay attention to other feelings too—to what the Canadian author Jeff Brown calls “truth-aches.” Not toothaches, although a truth-ache sometimes feels like a toothache—deep and insistent and problematic if not dealt with. Maggie and I told our truth-aches today. I want to feel them and remember them and consecrate them to real change within myself. I want to feel and listen to other truth-aches so I can get down to what matters most with the people in my life.

William James wrote, “We are like islands in the sea, separate on the surface but connected in the deep.” This is the change I most want to activate—to relate less to the surface of the people in my life and more to the depth of our connection. When that connection is hidden under layers of petty annoyances and knee-jerk reactivity, or when my sense of unworthiness and shame makes me an island unto myself, I want to dive deeper. I want to take a risk and break the spell of separation. And if I am met with rejection—if the other is unwilling to meet me in the deep—still, I will emerge having tried. Maggie and I left our separate islands today. The life-and-death necessity of our situation gave us the courage to do what we could have done all along: to hold hands, take the plunge, and swim through deep water to the other shore.

On the other shore we discovered a few things worth remembering. The first is that our stories are outdated—rote and partial versions of the complex humans we have become, and always were. In the society of our sisterhood, in the roles we fulfilled in the family system, we never got to enjoy the fullness of each other's beings, the roundness of our natures, the depth of our souls. We
diminished each other, not deliberately, not even consciously, but because we had never turned and faced each other as we had done today; we had never interrupted the storytelling; we had upheld the one-dimensional roles we had assumed on the family stage. And then, when we joined the larger human stage, we dragged those roles with us and adapted them at school, and at work, and with friends and intimates. And like most other people, raised in other human families, we felt the diminishment as a vague pain, the loss of something we barely remembered—the phantom limbs of our soul.

On the other shore we also discovered that we had taken things personally that weren't even about us; that we had judged ourselves more harshly than the other judged us. We discovered that just because we're imperfect doesn't mean we are unlovable. In fact, by admitting to each other our human imperfections, lo and behold, we became the perfect match. We became Maggie-Liz.

And the biggest discovery of all was this: There is a field; it is made of love; it is our home.
I'll meet you there.

OVER THE NEXT FOUR DAYS
Maggie and I make a daily trip to the hospital for my injections. And then we return to her house where we lounge around—Maggie nauseated and tired from chemo, me achy and tired from the Neupogen shots. We rest in the window seat overlooking the field. We watch the bluebirds scratch at the ground and carry bits of straw and twigs to the nesting boxes that Maggie and Oliver have placed where the field meets the forest. The birds are busy; we're not. I know this drives Maggie crazy. I know this because we were raised in the same boot camp, where lying around in the middle of the day was heretical. Maggie is itching to get out into the garden; it's hard for her to witness the industriousness of the birds and not join them in their spring ritual. But the doctors have forbidden her from digging in the dirt. We'll see how long she obeys their orders.

With each Neupogen shot, the ache in my bones travels deeper, until I experience it not so much as pain but more like an echo from an unexplored cave where the body and emotions are one. Sometimes I have to go into the guest room and close the door and cry, unable to determine if it's heartbreak or bone ache that is causing the tears. The amount of love and protection I am feeling for my sister is overwhelming. My mind knows that the bone marrow transplant may not work, that the cancer may come back, that Maggie may die sooner rather than later, but my heart and
bones have other ideas. They are attached to the outcome with a fierceness I have only felt before as a mother.

On the last night before the harvest, I can't sleep at all. I turn on the light and read until dawn. I watch the sun rise over the Green Mountains. The light settles in the valley and illuminates the fields outside the window. In a few hours I'll drive to the hospital and begin the harvest. Thinking about it, I'm reminded of a verse by the ancient Japanese poet Fujiwara no Teika:

From the beginning

I knew meeting could only

End in parting, yet

I ignored the coming dawn

And I gave myself to you.

Teika wrote those lines about two star-crossed lovers who ignore the inevitable parting for a taste of love. This morning, I recite the poem for my stem cells so they might give themselves fully to Maggie, come what may. And isn't this what all of us must do? Give ourselves to each other, even though we know one day we must part? Give ourselves to this life, even though we know it will end? This is the paradox at the heart of being human. Nothing stays the same; everything will change. And yet the love we long to feel, and the love we were born to give, can only be ours if we abandon ourselves to each moment, each breath, each other. If we wait for the perfect time, the perfect person, the perfected self, we'll stay frozen in an idea of love. But if we fearlessly engage with the life spread out before us, we will be rewarded with a heart that can hold it all—happiness and messiness, clarity and confusion, love and loss.

Now the sun is up. I leave the house before Maggie and Oliver awaken. I back my car out of the driveway and onto the muddy dirt road. I wind around the now familiar back roads that lead to the highway, and then I speed north to the hospital. When I walk into the main entrance of the vast Dartmouth Medical Center, my husband and one of my sons are waiting for me. They've come to sit with me over the many hours and multiple days it may take to collect the millions of stem cells required for the transplant. I can feel the cells spilling into my bloodstream, raring to go; my bones might just explode on their own if I'm not hooked up to the machine soon. My son has flown in from California to be with me; my husband and he have driven up from New York early this morning. Seeing them—two refugees from my everyday life—shocks me out of my typical “I'm brave enough to do this on my own” stance, and I break down and cry in their arms.

Dartmouth Medical Center is a beautiful hospital, with huge windows in every patient's room, gardens and terraces, and an airy inner solarium where a piano player fills the halls with classical music. But for some reason, the cell collection happens in the basement—in a cold, cement-floored room with no windows. Fortunately, my overprepared husband has brought me a sweater, shawl, and even a down vest. He's famous for this. We make fun of him for carting around extra raincoats, boots, water bottles, and warm clothing regardless of the season. We also make shameless use of his forethought, “borrowing” extra hats or gloves or whatever else we secretly rely on him for packing.

The transplant team greets us in the apheresis room with the kind of cheerful enthusiasm rarely experienced in a hospital. Maybe it's like this up in the maternity ward, but after spending the year with Maggie in the cancer wing, I'm used to distraught
faces and hushed conversations. The nurse assigned to me for the day is named Brian. He's a jovial fellow, wearing tie-dye surgical scrubs. He shows us the enormous apheresis machine, which looks like an old mainframe computer, or one of those sci-fi contraptions from a B movie, with blinking lights and wires and tubes running every which way.

As soon as I have changed into a hospital gown, Nurse Brian settles me into the bed by the machine, and the team gets to work. After checking my vital signs, several nurses take turns attempting to find veins in my arms large enough to accommodate the thick catheters that will carry the stem-cell-laden blood out of the vein in one of my arms, into the machine, and then back into my body through the other arm. In this way, my entire bloodstream will circulate for hours, as the machine separates the stem cells from the rest of the blood.

After unsuccessfully poking around for more than hour, the apheresis team sends for the hospital's “vein magician,” as Nurse Brian calls her. If they can't find a workable vein, I will have to be anesthetized for a central line to be surgically placed in my chest. This I don't want. The vein magician appears in the basement, looking like Nurse Ratched. The other nurses move aside. With no chitchat whatsoever, not even a how-do-you-do, Nurse Ratched taps on a vein in my left arm, plunges a needle into it, and voilà, the catheter tube is affixed, and before I know it, she's done the same thing with the other arm. The team gasps in appreciation; my husband almost faints. Nurse Brian hooks me up to the apheresis machine.

My arms are dotted with bruises and my heart is pounding with adrenaline. I watch the tube leading from my arm into the beeping and whirring machine as if it is connected to someone else's body. Almost immediately I see a steady flow of blood. I exhale fully for
the first time since we arrived at the hospital—maybe for the first time since I started the Neupogen shots; maybe for the first time since receiving the phone call from the transplant coordinator in the Miami airport. It's finally happening—my perfectly matched cells are being collected. I'm glad there's been enough time and enough talk between that phone call and this harvest—time for Maggie and me to revise what “perfectly matched” means to us. I close my eyes and encourage the stem cells to come on out. “
May my cells flow like maple sap on a warm spring morning
,” I say out loud, remembering the prayer from the therapy session. My son joins in. Soon my husband does too, and then Nurse Brian: “
May these cells flow like maple sap on a warm spring morning
,” we all repeat.

It's critical that the patient does not move her hands and arms during apheresis. And so, for however long it takes, Nurse Brian will flank my side—scratching an itch on my face, holding the bedpan when I pee, giving me water to drink, checking the flow of blood in the tubes, and interpreting the beeps and lights of the machine. My husband and son talk to me, talk to each other, talk to Brian, but soon I lie back and close my eyes, and visualize the activity in my bone marrow as the stem cells reproduce and push their way into the bloodstream. I think of how we go about our daily life, unaware of the dazzling feats occurring right beneath the skin. Will I remember this when the drama of the transplant is over? Will I remember to be awestruck by the human body, by the beautifully choreographed dance of the stem cells in the marrow of the bones? I inhale, and my lungs fill with air. The lungs filter out oxygen and send it to my heart. My heart pumps oxygenated blood to every part of my body. I exhale, and what my body cannot use is sent back into the atmosphere. Who thought this miracle up?

I awake from my reverie when a team of residents enters the
apheresis room to observe. They stand around me, paying more attention to the other actor in the drama: the machine. It has begun separating the stem cells from the blood. I listen to the doctor explain to the residents how to “read” the blood as the centrifuge spins off the salmon-colored stem cells and collects them in what looks like a common plastic baggie. After the stem cells are isolated and collected, the bulk of the blood is pumped back into my body through the tube in my other arm. The doctor tells the residents that stem cell apheresis is usually performed over several days until enough cells—at least two million, but preferably five million—have been collected.

“Most donors,” the doctor says, pointing at me, “provide sufficient stem cells within two to four days of apheresis.”

I smile. “I'm exhibit A,” I say. But the residents don't seem to get the joke. They file out of the room. I raise my hand to wave good-bye, but Nurse Brian puts his hand on mine.

“No movement,” he reminds me. Then he shakes his head and says, “Sorry about those numbskulls. I don't know where they find these people.”

At hour four, Maggie and Oliver arrive. They've brought lunch and we all sit together, having a little party. Maggie feeds me grapes. I ask her to peel them. She does get the joke. As we're eating, the doctor comes back to check on things. After reading the printout, he motions for Brian. They study the pages together, and then Brian pushes some buttons that elicit more beeps. After a while, the doctor turns to me with a puzzled look.

“Uh-oh,” I say. “What's wrong?”

“Nothing is wrong,” the doctor says.

“Au contraire,” says Brian. “It seems you've produced a shitload of cells, if you'll excuse my French. We have to recheck the
numbers, but if they're correct, we can close up shop here. We've collected eleven million cells in under five hours. I guess that maple-sap prayer worked.”

And just like that, we're done. Nurse Brian pronounces me the Stem Cell Queen. Several nurses swarm into the room. Two of them begin to work on me, unhooking me from the machine and removing the catheters. Another nurse arrives with a minifreezer on wheels. Before she can abscond with the stem cells, Maggie stops her.

“Can I have that for a minute?” she asks, reaching for the bright orange bag of stem-cell-laden blood. It looks like pulverized lox. The nurse shakes her head no. But Nurse Brian takes the bag from her and hands it to Maggie.

“Gorgeous,” Maggie says. She holds the little sealed baggie in her palm and kisses it. “I'm a vampire,” she says to the nurse.

She hands the bag to me, and I kiss it too.

“You're gonna label this, right?” I ask the nurse.

Maggie laughs. “Label it ‘Maggie-Liz.'”

The nurse snatches the bag from me, puts it in the freezer, and wheels out of the room in a hurry.

“See you soon, girls!” Maggie yells to the stem cells.