Marrow (5 page)

THE PHONE BOMB EXPLODED IN
Montana with the news of Maggie's illness in August during that week between our two birthdays when as little girls we shared one party. We were no longer little girls. We were, as Maggie called us, grown-assed women. I had just turned fifty-four, and she was about to turn fifty-two. The two of us had recently begun to weave our lives more closely together. Things had changed to set the stage for a new kind of sisterhood. Our parents had died—first my father, in a way that so matched the way he lived it was like the punch line to a great story. He was eighty-five and in better shape than most people are at twenty-five. He went skiing one day, came home, had dinner, got into bed, reread a chapter of his favorite book,
War and Peace
, turned out the light, went to sleep, and never woke up. Then, a few years later, my mother died, also in a way that fit the way she lived. She had been hiding a secret from us; she was seriously ill with a treatable disease that she had not treated for years. By the time we found out, it was too late to help her. The death of our parents left huge holes in our lives that my sisters and I tried to fill with each other.

And then, just months after our mother died, Maggie left her husband. She too had been hiding a secret. Her marriage, which had always seemed as wholesome and sturdy as her log house, was in fact deeply troubled. As the story leaked out, I was reminded of
how little we know about the deepest heart of those closest to us, how their reality is often different from what we imagine it to be. There had been trouble in paradise for a long time, trouble that Maggie had been too ashamed to reveal and too afraid to leave. But leave she did—walking away from the home on the river, the gardens, the animals, the bees, and the studio where her art had supported the family for years. Her kids were both in college. Our parents had died. It was time. And so she spun out of the solar system of the little town, and the gravitational pull of her parents, and her in-laws, and her husband.

Right before this happened, only months before my mother died, my second book was published. My mother was proud. But she was also embarrassed. The book's opening story is about my session with a psychic in a trailer park. My mother had been one of the early readers of the manuscript. Most of her critiques were grammatical, but she also begged me to lose the story about the psychic. She seemed to have no problem with my writing about sex or divorce—it was the psychic story that “cheapened” the contents. She also crossed out the word “soul” frequently, and suggested using the lowercase when referring to God. (“Think of it as a proper name, like Bob,” I said, trying to appeal to her inner English teacher.)

The story about the psychic stayed, and as it turned out, it's the one that meant the most to Maggie. I never expected Maggie to even crack the book's cover. She was an avid reader, but her taste did not include anything that smacked of self-help. She liked novels or nonfiction books about beekeeping and bread baking. Then my mother died and Maggie left her marriage, and there's nothing like trauma to change one's reading habits. There was one paragraph
from the story about the psychic that Maggie hand-copied onto a note card and kept in her car. For a long time the car was all she had. It's what she drove away in and where she kept her stuff, including the note card in the glove compartment.

Sometimes the terror and guilt about the end of her marriage and the loss of family and home eroded Maggie's resolve. As she drove the back roads as a visiting nurse, she would feel the car turning itself back toward her home on the river, as if it knew where to go better than she did, and she would pull the car to the shoulder, reach into the glove compartment, and read the excerpt from my book: “‘It is time for you to answer the call of your soul,' the psychic said emphatically. ‘It's calling, but you're too scared to listen. You think you know what's important, but you don't. You think it's important to keep things safe, but that's neither here nor there. What's important in this life is to learn the soul lessons.'”

Sitting at the side of the road, Maggie would argue with the card: “What do you mean, ‘the soul lessons'? What lessons could possibly be more important than an intact family, or a marriage vow, or a home? And what do you even mean by ‘the soul'?” She said her arguments were directed at the psychic, but later she admitted she was also talking to me. “I'm trading everything for
this
?” she would ask aloud, regarding the car crammed with the remains of her life—boxes of patients' charts, crates of flower specimens that she picked and dried and pressed for her botanical prints, garbage bags stuffed with winter coats and boots.

The soul's voice, though vast, is not loud. Other voices are louder—the voice of fear, the voice of blame, the voice of guilt, or denial, or despair. Sometimes I think the voices in the head are like an orchestra gone rogue. Trumpets blaring and percussion boom
ing, drowning out the poignant violin solo, the little song of the flute. Without the knowing hand of the one who grasps the whole piece of music, without the conductor, it is just noise.

The soul is the conductor. “Put your soul in charge of your life,” the psychic had told me. This was back when I was in the desolate middle of my own divorce; when I was changing everything for the sake of something I could barely describe, even to myself. What was that call I was hearing that seemed to come from an ache deep within? I was going to put that in charge of my life? I too argued with my soul for a long time before I came to know it as my wisest self, my compass that would direct me to a different kind of safety, an inner stability that far surpassed anything the noise in my head could imagine. Getting quiet enough to hear the voice of the soul became my practice. Learning to distinguish what was soul from what was dread, or guilt, or pride—that became my purpose. To dig for the soul, and then to gather the courage to put it in charge of my life.

I began to search for people whose soul seemed to be in charge. They had a certain look. A certain stature: strong yet humble, sober yet funny, striking yet ordinary. They looked determined and self-assured, and at the same time you got the sense they'd drop everything if you needed them. When I met Dr. Maya Angelou backstage at a conference, I found my icon of soulfulness. She's who I think of now if I've lost touch with my own soul. I conjure up an image of her tall self, striding to the lectern, with her red high heels and even redder lipstick. And her dignified posture. That's what I remember most—how she carried herself as she walked onto the stage and began her talk with the first stanza from her poem “Caged Bird”:

A free bird leaps

on the back of the wind

and floats downstream

till the current ends

and dips his wing

in the orange sun rays

and dares to claim the sky.

That is what happens when you put your soul in charge of your life. You dare to claim the sky. That sky is different for everyone. For one person, maybe the sky is having a baby, being a parent, growing a family. But for another it's never having kids; it's traveling the globe; it's saving the world. Your sky might be leaving a job, whereas another's might be fighting for it. Your claim to the sky could be an act of surrender—that moment when you finally learn how to love another. Or your claim to the sky might be when you finally learn how to love yourself; when you walk away from a relationship that demeans the soul, and you lay claim to your freedom. You know your sky. And if you don't, it's because you haven't listened closely enough. You are arguing with your soul instead of putting it in charge of your life.

Maggie's argument went on for many months, and actually many years, because even after she made a modicum of peace with claiming her own sky, still she often could not hear the voice of her soul, and when she could, she barely believed she deserved to listen to its call. One year after she told the truth about her marriage, one year after being uprooted and homeless, one year after standing on her own for the first time in her life, Maggie's body went haywire. The genes within the DNA of one little bone marrow cell mutated
and became an aggressive cancer cell and spread rapidly throughout her body.

The day after I returned from Montana, on Maggie's birthday, I met her at the Dartmouth Medical Center in New Hampshire, where she was diagnosed with stage IV mantle cell lymphoma. My only clear memory of that day is listening to the doctor tell Maggie that she would die—and soon—if she didn't start treatment that afternoon. As he described the regimen—chemotherapy, radiation, months in the hospital, a year of isolation—Maggie fainted and slipped off the examining table. I lunged to catch her. Sitting on the cold hospital floor, holding her in my arms, I felt my parents holding me in their arms. And right then and there I vowed to them I would do what I could to help my sister.

The first year of Maggie's treatments was a race between what would kill her first, the cancer or the medicine. But she was as tough as she'd ever been, and eventually she won the race; she went into remission. She returned to her work as a nurse practitioner, serving her rural community, where she was known and loved as Dr. Maggie. She resumed her artwork, collecting and preserving plant life and turning it into masterful botanical prints that she sold at craft shows and galleries. But best of all, she had a home again, and a wonderful partner—Oliver—a man she had fallen in love with before her diagnosis, and who shepherded her through every gruesome treatment. The word “cured” began popping up during her increasingly infrequent hospital visits.

Often during those first years of remission I would think back to the plane ride home from Montana, and I'd hear my soul admonishing me to have faith.

“You'll see,” my soul had told me. “Your sister will grow from
this; she'll rise to meet it. And all who travel with her will uncover surprising treasures because of this path her soul has chosen.”

“Yeah, yeah,” I would say to my soul. “Easy for you to say with your big perspective and sense of meaning.”

But growth
did
happen, and gifts
were
given. So much so that as the years went by—first one year and then two, and then five, then seven—I figured the growth was sufficient, the treasures unearthed. I figured this path her soul had chosen had ended at a plateau of health and stability and well-deserved happiness. And so, as she rebuilt her life, I went back to mine.

There is nothing but mystery in the world,

how it hides behind the fabric of our poor, browbeat days, shining brightly, and we don't even know it.

—SUE MONK KIDD

AND THEN, QUITE SUDDENLY, AFTER
seven years of remission, the cancer comes back. Or rather, it never fully succumbed to the treatment. A few little cells (and maybe even just one) have been hibernating. Now they are awake and duplicating in Maggie's blood, her lungs, her lymph nodes. She caught it fast, but it's spreading faster, and the only way to beat it this time is with a bone marrow transplant from a genetically matched donor. Before that can happen, a match must be found. But even before that she has to take a potentially lethal dose of chemotherapy. And this time she also has to take the bullets of full-body radiation—so that her cancer-laden blood cells are eradicated to make way for cells from the donor, should one be found. I've never liked the way war jargon is applied to cancer treatment, but in this case it seems appropriate. I don't mention this to Maggie, but I've recently learned that chemotherapy was developed after World War I, when changes were observed in the bone marrow cells of soldiers exposed to mustard gas.

At first Maggie refuses treatment, even when her doctors tell her that without it she will live only a few weeks. The thought of what happened the last time hits her like a truck; it barrels down the road and slams into her dignity. All she can think of is vomiting and hallucinating and losing her hair and living like a ghost as the whole world passed her by.

“I will not go through that again,” she tells the doctor as we sit in his examining room on a freezing February day, in the Dartmouth Medical Center in New Hampshire, horrified to be in the same room again seven years later, the same doctor, the same nurse, the same questions, the same lack of conclusive answers. We pepper the doctor with questions: Will a transplant work?
For some people.
Will she survive the treatment?
Many people do.
What's the survival rate?
Those kinds of statistics aren't helpful.
How long do people live after transplant?
That depends on a lot of factors.

Maggie's daughter holds her mother's hand. She's crying, but Maggie isn't. Instead she looks like a trapped bird, her head turning from me to the doctor to Oliver to her kids. Wanting out. Out of the room, out of her body, out of life if this is what life has become. But the doctor convinces her that she can start the chemotherapy and stop at any point. And while she begins treatment, they will search for a bone marrow donor. They will test each of the sisters—not her children or other relatives—because siblings present the best chance of finding a “perfect match,” one where all the genetic markers line up. The closer the genetic markers, the more successful the transplant. There's only a 25 percent chance of a sibling match, and a smaller chance of the match being perfect. If none of the sisters are a close enough match, they will search the international donor bank, where there's an even lower likelihood of getting a high-degree match.

If a match is found, and if Maggie tolerates (code for survives) the high-dose chemotherapy and radiation, and if it can rid her body of the lymphoma, she can choose to go ahead with the transplant. But for now, all she has to do is start the chemo, and all the sisters have to do is get our cheeks swabbed and wait for the results.

Maggie nods her head OK. That's her level of buy-in for now. But it's enough to begin. We go straight from the doctor's office into the maze of the hospital for her first chemo treatment. I sit with her in the infusion suite. That's what the chemotherapy area of the hospital is called—the infusion suite. All around us, fellow refugees from normal life lie huddled in heaps of bedding and tubes. Others rest in lounge chairs, under warmed blankets that the angel nurses replenish frequently. Friends and family make quiet conversation, or stare out the windows as the New Hampshire sleet pelts the glass.

I watch Maggie watching. A young man in the bed next to hers is receiving his first chemotherapy infusion; he practically vibrates with anxiety. An older woman—a chemo veteran—sits alone in a reclining chair, reading. She's bald and sunken-eyed, with an expression of wry acceptance. I smile at her and she winks. A nurse carries a tray with food to a man on the other side of the suite. The smell of soup lingers and mingles with the antiseptic odor of cleaning products. I take my sister's small hand, cold under the warmed blankets, and pat it until she falls asleep. The chemo ticks like a clock, dripping into her veins. I sit until it begins to grow dark.

Before I leave, I gather up my courage and tell Maggie I'm thinking of going on a vacation to the Caribbean. Saying the words “vacation” and “Caribbean” in the chemo suite seems cruel; I feel like one of the evil stepsisters going to the ball, leaving Cinderella behind to pick lentils out of the fireplace.

“I won't go if you don't want me to, Maggie,” I say.

“No! Go,” she pleads. “I want you to live your own life. At least one of us should. Promise?”

“OK. I'll go. I'll enjoy it for the two of us.”

“Well, don't enjoy it too much,” Maggie says.

And so my husband and I decide to do something millions of
people do: escape winter for a week and go somewhere warm. But this is rare for us. The two of us are work- and family-obsessed people for whom leisure travel feels like an act of treason. We procrastinate about where to go and then convince each other that neither of us has the time to take off.

But this has been a difficult year and a cold winter. And so here we are, in the Miami airport, changing planes, heading to a Caribbean island. As I sit next to my husband in a row of orange bucket seats, I already feel my body uncoiling. The warm sunlight streams through the tall airport windows. Maybe I will be able to do what Maggie begged of me—to forget about her for a few days. I lean back and exhale.

The announcement that boarding will begin soon for our plane comes over the loudspeaker.

“I'll be right back,” my husband says. “Watch my bag, OK?” He pushes his backpack in my direction.

“I will not watch your bag,” I reply. My husband has a maddening habit of disappearing minutes before it's time to depart, overcome with the sudden need to purchase a pack of gum. While we have never missed a flight, we've come close, and we've come even closer to my flying off without him. I think that's why he asks me to watch his bag.

“I will not watch your bag,” I repeat, “and you will not leave.” I hold onto his arm. “See?” I point to the travelers gathering at the gate. “We're about to board the plane. We need this vacation.”

At that very moment my cell phone rings. I take it out of my purse, see the name of the hospital, and brace for awful news. I show the caller ID to my husband. He sits down.

It's the bone marrow transplant coordinator calling to tell me
that the lab results for all the sisters have come back. “I have good news!” the nurse says. She seems overjoyed to be the bearer of positivity. I can only imagine how rare this is for her.

“We found a match for Maggie,” she exclaims. “Are you sitting down? It's you!”

I'm too stunned to reply.

“And there's even better news,” the nurse continues. “You're a perfect match! All ten genetic markers lined up with Maggie's.” She begins explaining the science of genetic tissue testing, but I tune her out. My mind goes in several directions at once: Did I imagine I would be perfectly matched with Maggie? No, not really. If I had to guess, I would have picked one of the other sisters. I wonder if they'll be jealous, or maybe they'll be relieved, or probably both. I wonder if it's dumb luck that we're perfectly matched, or is it fate, kismet, karma? It feels preposterous—like a science fiction story. Or maybe it's a miracle. I'm not sure who gets to determine such things, but this feels like a miracle to me. I wonder what Maggie thinks.

“Does Maggie know?” I ask the nurse.

“Yes. I just spoke with her. She says you should go on vacation and call her later.”

I sense the presence of someone behind me and turn around to see who's there. No one. But then I feel it again. I look, but no one is there. Everyone else has lined up to board the small aircraft. I finish the call, take my husband's hand, and we follow the others across the tarmac and into the plane. We find our seats, the plane takes off, and my husband leans back and closes his eyes. But I just sit there, hearing the transplant coordinator's voice replaying in my mind, over and over: “I have good news! We found a match for Maggie! It's you!”

“Wow,” I whisper to myself. “Wow.” That's the most I can come up with.

And then I feel it again—as if someone is behind me, trying to get my attention. I turn and look over the top of the headrest. The seats behind us are empty. So I turn back, lean against my husband, and close my eyes too. And that's when I see them—my parents. As clear as if they were on the plane with us, I see my mother and father. They smile at me and nod their heads in some sort of silent agreement. They were never ones to dole out praise or thanks, and they don't do that now. They do something better—they dare me to hope.

I keep my eyes shut and remain as still as I can. I don't want my parents to go away. I want them to tell me something, to explain their sudden presence, to explain the bone marrow match. I wait. They remain with me. And then I imagine words floating out of their spirit mouths.

“We loved you girls into being,” they say.

“Our love gave Maggie her life the first time,” my father says.

“Your love can give her a second life,” my mother says.

And then I understand. I may not know for sure about fate or karma or miracles, but I'm sure about love. My eyes fill with tears.

“Wow,” I whisper to my father and mother.

“Wow,” they whisper back.

field notes
•
march 1

my 3 sisters were tested for the possibility of being a match for a donor stem cell transplant. the possibility of this happening was low—25%. each sister had to scrape her inner mouth cheek with a tongue blade, and send that sample off to a lab. a sibling donor's cells have a better
chance of engrafting and being accepted into one's bloodstream and marrow than a non-family member's. the nurse at dartmouth called me today with the news that liz and i match 10/10. a perfect match. i felt my spirits notch up on the hope scale. but i'm suspicious of hope. it has fooled me before, and i don't even know what i'm hoping for anyway. a year? 2 years? a cure? i'm afraid to read the statistics; afraid not to. afraid to hope; afraid not to. liz called me from vacation. i told her i was afraid to hope. so she told me a greek myth about the spirit of hope. everytime i talk to her she quotes walt whitman or talks about a greek god. i think she's turning into our mother. or maybe i just need a mother now.