Marrow (22 page)

THE BEST EXPLANATION FOR WHY
Maggie's cancer returned is that the treatments given before the transplant did not eliminate all the malignant cells. Even if only one cancer cell remained, hiding out in a dark little corner of the body from the poison arrows of chemo and the killer rays of radiation, that one cell could reproduce and spread. Even if the graft-versus-host process had been routing out remaining cancer cells, a patient with relapsed or advanced disease at the time of transplant is not always protected from recurrence.

Late at night I open my computer and one last time I research the heck out of Maggie's illness, searching for third opinions, radical cures, signs of hope on the horizon. At our last visit to the hospital, there was talk of more rounds of chemotherapy and radiation and even another transplant, but those plans were nixed. There were discussions about other drug trials, but none may be right for her type or stage of lymphoma. For now, she is taking the experimental drug suggested by the doctor in Los Angeles.

This doctor carefully and respectfully explains the new drug to me. One feature of cancer cells, she says, is that they divide rapidly. Chemotherapy goes after and kills rapidly dividing cells. Sounds like a great plan, but since many normal cells also divide rapidly, chemotherapy goes after them as well, setting in motion a take-no-prisoners type of medical warfare. “Ever wonder why cancer
patients are bald?” the doctor asks me. Hair cells grow rapidly, she explains. Bang-bang goes the chemotherapy, and soon hair cells and many other normal cells are dead too. After the chemotherapy is over, the hope is that the good cells will repair and renew, and the hair will grow back, but the cancer won't.

The new medicine Maggie is taking is not called chemotherapy. It's “targeted therapy,” which is a whole different approach. Years of research by molecular biologists have uncovered therapies that attack cancer cells without damaging normal cells. And even more promising, some targeted therapies trigger an immune response that crowds out the cancer cells, causing even less harm to normal cells. The doctor in Los Angeles uses the metaphor of a key and a locked door to describe the drug Maggie is now taking. Until recently, the doctor says, the best tools they had to unlock the door were explosives like chemotherapy and radiation. The targeted therapies work more like a key.

And now Maggie is using that key. The thing is, the key opens a door to the big unknown. No one can say if it will work or, if it works, what working even looks like. Will it prolong her life for a few months? A few years? Will it stall the growth of cancer until the next key is discovered, tested, and approved? We don't know. Welcome to uncertainty.

A dear friend of mine, a man who has been living with recurring cancer for many years, says it's not death he fears. Even though he can't say exactly what will happen after he leaves this life, he trusts in “something else” on the other side of death. It's being able to “live while leaving” that keeps him up at night. “I want to be able to hold life dear and to live it fully for however long I have left—to live while leaving.”

And that is what Maggie says she will do until she no longer
can. If there's one thing you can say about her, she knows how to live. This is what she is teaching me. I am in school and she is the teacher and I am taking notes. Because we are all living while leaving. Our seats are reserved on the ferry. We may not be sure of the crossing time, but we will all cross over. My husband says we'll all meet again on the other shore. He's sure of it. He knows it in his bones. Sometimes, when my own faith wavers, I hold on to his. Now is such a time.

I tell him I no longer know what to pray for. That Maggie sets sail quickly for the other side, without too much pain or fear? That the new drug kicks in and unlocks the door, giving her enough time to be at her daughter's wedding in the summer? That she is miraculously cured? My husband suggests this simple prayer: “Thy will be done.”

Ahhh, yes. That's a good prayer. “Thy will be done.” My own will serves me well in the things I can create and control. But those other things? The bigger things, the mysterious things, the unanswerable things? Those are out of my control; they will not bend to the force of my will. There's a bigger, more mysterious will at work in the world, one we may never fully understand, but that doesn't mean we can't trust it or surrender to it.

“Thy will be done.” Maybe those words carry too much biblical baggage for you. If so, you can replace them with a phrase the folks in AA say: “Let go, let God.” Or leave off the word “God,” and make your prayer be this: “Let go, let go, let go.” Sometimes, lying in bed, before I fall into sleep, I hear those words on the wind through the open window—as if the angels are shaking their heads and sighing, “There's only one prayer, dear. We'll tell you again, in whatever words you can hear, and as many times as you need to hear them:
Thy will be done. Let go, let God. Let go, let go, let go.
”

Prayer feels unnatural to some people—encrusted with superstition, or connected to a religion one has left behind. If you're one of those people, and if willfulness or worry gets the better of you, try this: Sit yourself down at a table and rest your head on your folded arms. Roll your head back and forth on your arms and exhale with a loud sigh. You can imagine a few nondenominational angels standing over you, with rueful, patient smiles, clucking their tongues and saying, “There's only one prayer, dear . . .” Nod your head, rest, and for a few seconds, just give up. Surrender. Feel the grace of what was, what is, and what will be. You can do this wherever you are—on a train, at school, at a desk before a meeting at work. You can pull the car into a parking lot and lean your arms on the steering wheel. You can rest your head, shake it back and forth, breathe, and whisper, “Let go, let go, let go.” No one will know that you're schmoozing with angels.

Too much talk of angels and God for you? Here's some tough love from one of my favorite philosophers, Terence McKenna. “Don't worry,” McKenna writes. “You don't know enough to worry. Who do you think you are that you should worry, for cryin' out loud? Worry presupposes a knowledge of the situation that is too vast for the brain's puny imagining. Worry is, in fact, a form of hubris.”

I would never promise you that I know how to put an end to worry. There's an inherent vulnerability to the condition of being human, and that vulnerability breeds anxiety for most of us. But I can tell you that worry and anxiety do not have to dominate your experience of being alive. Impossible, you say. There's so much to worry about every day. About our own lives and the lives of the people we love. It's a crazy world out there; anything can happen, and across a lifetime, it usually does.

But anxiety and worry do not protect us from the world. In fact, they make things worse—not only for ourselves but also for the people we love. No one likes to be worried about. The cessation of worry is actually a gift you can give to others; it's a vote of confidence in their capacity to find their own strength in the storm.

So how to do it? How to let go of control and ease up on the worry and anxiety? My suggestion may sound counterintuitive. I suggest becoming even more vulnerable. I suggest this to you, because it is what I am finally learning as I confront the limits of my own will and my compulsive urge to fix, and solve, and do. When there is nothing left to be done, and the road ahead has no markers, there is always a choice: I can worry about what's happening, or I can surrender to the road. I can go out into the world like an explorer. I can partake of life just as it is. I can roll around and get dirty with it. I can risk it, enjoy it, suffer with it, feel it, and allow those I love to do the same. Because as Terence McKenna says, worry about the world is a form of hubris. Who really knows what is best for us and for our beloveds?

And so I offer you this one last prayer. It is my favorite prayer—a plea for clarity, for vision. I address it to the angels, to the gods, to God, to whoever is listening to us vulnerable human beings. I say it with humility and a dash of urgency: “Please, remove the veils so I might see what is really happening here, and not be intoxicated by my will and my worries. Remove the veils that I might see beyond my fantasies and fears. Remove the veils that I might see.”

All goes onward and outward, nothing collapses,

And to die is different from what any one supposed, and luckier.

—WALT WHITMAN

field notes
•
december 1

i am beginning to think about taking pills to end my life. vermont has just made it legal. i called a friend who worked on that bill. she told me who to talk to, how to learn more. i have lost so much control over my own destiny. i need some of it back. oddly enough, having a way to end my life will give me back my life. no one wants to live more than i do. i don't want to die, but i don't want to be kept alive as a test case either. i know my doctors are trying as hard as they can to help me. but i'm on the inside of this medical world. i know that doctors hate to fail. they think death is a failure. well, its my life and my death and i want them back.

Christmas has come and gone. Maggie spent it in the hospital, which allowed me to spend it with my family. The new drug does not seem to be halting the spread of the cancer, and no other treatments have been suggested. But even as Maggie gets closer to death, a part of me continues to dwell in the delusion that she will get better, that she will be here on earth forever, with us—the four sisters, her kids, her vibrant life. It's a childish fantasy, I know. But like all fantasies, my dream of Maggie's recovery flouts the rules of reality. And it flies in the face of what Maggie herself is choosing now. She has surrendered to the virulence of the disease, to where it is taking her. She wants to go. She's not happy about going. She has
so much to live for, she says, most especially her kids. She wants to stay with them, to be here for them, to know their children, to help them, to guide them. She feels guilty to be leaving them.

But she is reading the tea leaves in the bottom of her cup. They are telling her things only she can decipher. More and more, when she talks about life here on earth, her voice is heavy. But when she mentions dying, her tone lightens, becomes wistful. Sometimes she talks about colors and light—a break in the clouds she noticed from her hospital window, a feeling of freedom and movement.

She lies alone in that hospital room, where she has spent so many days and nights, and she scans the story of her life. She tells me she is coming to the last pages. I have to believe her. Maybe, if I were the sick one, I would travel to another state or country where the cutting edge of cancer care is offering this drug trial or that natural remedy. But for whatever reasons—probably wise ones—Maggie has decided not to pursue any more treatment. She has waved the white flag.

Now New Year's is on the horizon. It's the no-man's-land between the holidays. I rattle around in the void. This strange feeling of being on the outside of life looking in is familiar to me; I know it from my years of midwifery—stumbling home after forty-eight hours of attending a long birth, finding the rest of the world brewing coffee, making school lunches, rushing off to work. Leaving me on the couch, trying to sleep, but still hearing the sounds of the laboring mother, still seeing the baby's head crowning and then the new little person wriggling into this world, trailing news from the other one.

When I'm on the phone with Maggie, I close my eyes, and I see her heading in the other direction. I hear the strenuous breathing, the water in her lungs. As if death is filling her up before taking her away. As if death is not the absence of life, but instead, it is
something shimmering and oceanic and tidal, bigger and stronger than anything we can imagine, anything we can name. I feel the rope that ties Maggie's boat to the land, to us, slackening. She lies in bed, but already she is making plans, charting her course, preparing for the journey.

Meanwhile, back on this side, I can't make plans. Plans are being made all around me, but I can't make my own. I go to work, where we are planning next year's programs. I come back home and my friends are planning a New Year's party. Old friends call; they are planning to visit and stay at our house. I get tired of my answers to everyone's plans: “I don't know if I can come to a meeting next week”; “I don't know if I will be at the party”; “I don't know if you can stay at our house.” I have been saying these words for weeks and months. I have become unreliable to most in order to be completely reliable to Maggie. It's taking a toll on my daily relationships and my work. But
this
is my work now: to help usher my sister out of the world. If I feel overwhelmed, or doubtful, or scared, I just sit still, and I say the prayer: “Remove the veils that I might see.” The veils part, and the path is clear, and it leads to Maggie.

This last week of December is cold and snowy. A fitting season, says Maggie, to die. From her hospital bed she tells me that there's only one more thing she wants to do, and that is to put the finishing touches on her art show,
Gone to Seed
, and to see it hung at the gallery. I tell her we will all pitch in and help her fulfill that last dream. But is this possible? No one can tell us. Will she rally or fall off the cliff? Will her candle slowly burn out, or will she take matters into her own hands and snuff out the flame with the help of death-with-dignity drugs? She has been talking about securing the pills since her first diagnosis. What used to be called “euthanasia” (ancient Greek for “good death”) and then “physician-assisted
suicide” (think Dr. Kevorkian) is now referred to as “death with dignity,” and it has recently been legalized in the state of Vermont. Some people, including some health professionals, refuse to use the phrase “death with dignity,” and have strong moral opposition to making it available. Others, around the country, are fighting for the legal rights of a terminally ill person to relieve suffering and intentionally end his or her life.

I don't know how I feel about it. But Maggie has always been adamant that a person who only has weeks left to live should be able to decide when to die. Perhaps she feels this way because she's a nurse and has seen up close what happens to real people when the power to choose has been taken away by pain, or dementia, or a drug-induced stupor. Now she is in the same bind. If she doesn't take pain medication, the tumors in her organs and bones wrack her little body, but when she takes the pain pills, she goes in and out of her rational mind, has frightening and confusing thoughts, and babbles incoherently. If she doesn't have her lungs drained regularly, she feels as if she drowning in her own fluid, but the procedures are becoming more and more uncomfortable and ineffective.

She is facing all of this alone in the hospital. Oliver and the kids visit, but not every day because she has told us to allow her to rest, to give her space. Should we believe her? She has spent her life telling people what she thinks they want to hear. Is that what she's doing now? Talking to her on the phone gives me no clarity. In the morning she's angry and dark, and then on the next call she is confused—sometimes giddy, sometimes weepy. Is it the pain medication that makes her say strange things and slur her words? Or has the cancer spread to her brain? Is it the unfairness of an early death that makes her angry or the mess she says she's leaving
behind? During one of our calls when she's angry and dark, she tells me she'd rather die right now than have to deal with the mess for one more minute.

“What mess?” I ask. She's been concerned for months that her sisters and kids will have to deal with the tangle of old clothes in her closets and stuff in her studio.

“Are you still stressing over your underpants drawer?” I ask.

“No,” she snaps. “Not that kind of mess. I don't care what you all think about my ratty old underpants.”

“Then what?” I ask.

“It's just a mess, believe me,” she snarls. “All the things I never said. All the things I can't say now.”

“About what? To whom?”

“To everyone. The kids, Oliver, the sisters. My friends. I just never said what I really wanted and it's too late now.”

“That's not true. It's not too late. What do you want to say?”

“Ha!” she spits at me over the phone. “What do you know about it? You still have a lot of years left. I don't. I can't change anything now. I'm going to die in a few days. You obviously have no idea what you're talking about.” She begins to cry. “I'm sorry. I'm sorry, Liz. It's just a mess and there's no going back.”

She hangs up the phone. I am heartsick. Should I rush to her? Comfort her? Or does she need to sit in the storm of her life's story, to work it out, to make her own peace? I decide to leave her be for now.

She calls the next day in an entirely different mood. She has just heard from a local doctor, one of the few in her state who prescribes the death-with-dignity drugs. This was her third talk with him; previously, she had gone to his office for the requisite two visits. Now he tells her she can pick up a prescription for the legal
and lethal cocktail. Vermont's law is only a few months old, and to date only two people have used it. Will Maggie be the third? Today she thinks she will, and this seems to ease her anger and clear her head. Again she mentions that she's been watching the winter sky from her hospital bed and focusing on the jabs of light that pierce the gray New Hampshire clouds. She surprises me by saying, “That's where I'm going, Liz. It's all about the light.” Her voice is both tired and animated.

The next day she calls and says she wants to explain her anger. “Remember what we talked about at the therapist's?” she asks.

“We talked about a lot of things,” I say.

“Yeah, well, there's only one thing I'm still chewing on. I've got it down to only one thing. I think that's progress!”

“What is it?”

“How I wasted so much time in my life not saying what I really meant. Twisting myself into knots, trying to make everyone happy. I've been mad about that forever. But you would never know it, would you? I acted like everything was OK, better than OK. Great! Chipper! Happy little Maggie. Blah, blah, blah.” She's getting angry again.

“It's OK, Maggie,” I say.

She ignores me and keeps talking. “I never wanted to hurt people,” she says, slurring her words, rushing to get everything out. “I never told anyone what I really thought. I'd tell one person one thing, what I thought he wanted to hear, and another person something entirely different. I did it in my marriage. I did it with my friends. And with you sisters. I did it at work with the doctors and the nurses. I knew eventually everything would bump up against each other and . . . and, well, here we are. At the end of the line and things are bumping all over the place. It makes me mad!
I'm mad at everyone all the time. All day long. Except I'm the one who created the mess.”

None of this is news to me, and none of it seems all that unique to Maggie. Who hasn't created some kind of mess over the course of a life? What does she think we will discover after she dies? If I didn't know her so well, I'd think she was talking about something shocking—like a pile of stolen bills in that ratty underpants drawer. Or a love child being raised by its grandparents in a distant state.

“Oh, maybe I'm just being dramatic,” Maggie says, backing away from the subject. “Don't make me talk about it, OK?”

But I do make her talk about it. Because if I don't now, there's a chance we'll never have the opportunity again, and I want her to be able to say what she means in such a way that she finally puts it to rest. I want her to put a stake of selfhood in the ground before she sheds her body and travels into that light she is talking about more and more. I want her to claim her dignity as the glorious person she has been during her time as Maggie.

To me, this is death with dignity.

I remind Maggie that our mother went to her death close-lipped. She was ashamed of something she would never reveal, and so it became a heavy weight in a bag that she dragged behind her for her entire life right up to her last breath. For years my imagination conjured up novelistic secrets in my mother's bag: maybe she had been abused as a little girl; maybe she left her heart in college, perhaps with a secret boyfriend, or maybe even another woman; maybe she had a torrid affair during her marriage, on Long Island, with the handsome man who waxed our linoleum floors, or in Vermont with the choir director at the church. This is where my overimaginative mind goes.

But something must have happened to our mother that made her
so ashamed of her body, so unable to speak her mind, so tightly wound around a pit of anxiety. My sisters and I would wonder aloud about what made her so nervous and afraid and at times harshly judgmental, and at other times high-spirited and childish. Now I think her secret was something simpler than my imaginings. Something that we all drag behind us in a cinched bag: The shame of being a flawed, bumbling human. The shame of not being smart enough, or beautiful enough, or rich or thin or sexy or strong enough, or whatever it is we stuff into the bag of our not-enoughness. The shame of having big feelings, big dreams, big “who the hell does she think she is” ambitions. The shame of being aggressive and jealous and mean. Or lazy and dull and small-minded. Of having made mistakes and missteps and
meshuggaas
of all kinds. The shame of being complex and inconsistent and paradoxical. The embarrassment of being human.

Why are we embarrassed? What in heaven's name are we so ashamed of? Why do we hide our whole selves from each other when what we are hiding is merely the commonness of being human? Once shared, my mother's shame would have shrunk. Once expressed, especially to us, her daughters, her anxious insecurities would have melted in the heat of our love, in the humor of our humanness. But she kept her bag tightly tied, and she died ashamed.

“Don't do that,” I tell Maggie. “Don't die like Marsh did.”

So Maggie revisits her past with me. I've heard it before, but never like this—never strung together as a narrative she is trying to understand and bring to completion. She talks about when she was sexually molested in college by a professor and she told our mother, who forbade her to go to the authorities. She talks about when she married her husband—her high school sweetheart. She put him and the life he led on a pedestal, but she was also afraid to
disappoint him and the small Vermont town where her parents and his parents were next-door neighbors. She grew to resent and fear the way he controlled her. But for years, she never confronted their problems head-on, and instead she did what she was told, she swallowed her sense of self, and she put on a happy face for the world. And how all the while, she took remarkable care of everyone—her children, our parents, his parents, her patients, her friends—in a frenzied attempt to prove to the world that she was good and worthy of love.