Marrow (16 page)

FOR THE FIRST COUPLE OF
weeks post-transplant, Maggie's recovery is swift. By week two, my stem cells have almost fully engrafted in her bones and are beginning to spawn fresh, healthy blood cells. After only three weeks, she is released from the hospital and sent home with instructions to eat well, rest well, and stay away from crowds and people with contagious illness. Everyone is thrilled and hopeful. She's still taking a pharmacy's worth of pills—eleven different medications a day, and when I look them up online, five of them note nausea, diarrhea, and headaches as side effects. The other six have side effects that include mouth sores and immune suppression and life-threatening infection. She will be on these pills for up to a year. She spends the winter resting as well as a hummingbird can rest, managing side effects, trying to stay positive on this long, painful ascent to health.

On one website, I read that bone marrow transplant recipients are called chimeras. I have a vague recollection of my mother reading us a Greek myth about a creature called the Chimera, but like so much of what she taught us, the story is now gathering dust in a disregarded region of the brain. When my mother died, I took some of her books—not many, because there were just too many. I took the ones that were part of her canon, like the classicist Edith Hamilton's
Mythology
. We were raised on Edith Hamilton. As a child I thought she was a friend of the family—that's how often
my mother quoted her. (I also thought Eleanor Roosevelt was my mother's best friend.)

I find my copy of
Mythology
and brush up on the myth of the Chimera. I learn that the Chimera breathed fire, was female, vicious, and powerful. She was one single creature with the strength of three separate animals. “The Chimera was held to be unconquerable,” Edith Hamilton wrote. “She was a most singular portent, a lion in front, a serpent behind, a goat in between.” Now the term is used to describe any fictional animal with parts taken from other animals, or it can also mean an idea or a thing that is “wildly inventive and implausible.”

Well, this whole transplant thing strikes me as wildly inventive and implausible. Maggie is now part me and part herself. All of her blood is “mine,” and the rest of her is . . . well, Maggie. Even the medical people think it's wildly inventive and implausible—otherwise why would they call transplant recipients chimeras?

I tell Maggie that she is now the Chimera. “You're part lion, part snake, part goat. And you're vicious and powerful. Edith Hamilton herself says you are unconquerable. OK?”

“OK, Mom,” Maggie replies.

But as the weeks, and then months, go by, Maggie feels anything but unconquerable. Rather she feels beaten up and held down, conquered by exhaustion, skin rashes, and diarrhea. Several times she spikes a fever and is rushed to the hospital. And then she begins to experience symptoms of graft-versus-host disease, meaning my cells are attacking her body. The doctors tell her not to worry; that GVHD is common; and that an upside of the disease is that the newly transplanted cells are not only attacking Maggie, but also seeking out and destroying cancer cells that may have survived the chemo and radiation.

Besides pointing to GVHD, her symptoms may also indicate that her immune system is rejecting my cells, which can lead to transplant failure.
Rejection
and
attack
. Maggie says her body feels like a battleground where our cells are fighting each other—like those Civil War stories that pit brother against brother. I urgently attempt to make contact with my cells. I close my eyes and imagine them, some resting patiently in the quiet center of Maggie's bones, others swimming around in her bloodstream, diligently doing what they're told, and some on the lookout for cancer cells. And then there are those other ones—the overaggressive troublemakers as well as the reluctant self-doubters. I thank the well-behaved cells and cajole the ne'er-do-well ones into compliance. “Come on, guys!” I say to them (in my most prayerful voice). “Get with the program. Follow directions. Attack the cancer cells but spare the patient.” Then I encourage the insecure cells to believe in themselves. Now I'm a coach: “You can do it! Show 'em what you've got!” It all feels reminiscent of when I tried to help my kids with their homework. How much is too much involvement?

I pay close attention to the way I react to the news, to people different from me, to perceived threats. Am I unwittingly sending a message to my cells to be on vigilant alert for strangers who might do them harm? I know I have the tendency (that we all have the tendency) to turn anyone who isn't me into a stranger, into the “other.”

Or perhaps it is something quite different. Perhaps, if Maggie's body is rejecting the transplant, it is because my cells are too wimpy to take a stand for their very existence. Are they responding to my all too human fears of unworthiness? Is my impostor syndrome acting up, flooding my cells with insecurity and making
them question their ability to fulfill the task of the transplant? I do my best to remember the dignity of my soul as I go about my daily life. I brush the dust off my meditation practice and dedicate it to my cells. Throughout the day I sit up tall, close my eyes, and come home to my soul. I ask it to take charge of this wildly inventive and implausible situation.

I wonder if my cells think I abandoned them—do they need something from me? Did I prepare them adequately? Did I even ask their permission to be extracted, frozen, thawed, and then pumped into a foreign body? I can't remember if we had that conversation before they were wrested from my bones. I wonder if it would have made a difference. I wonder if I'm crazy. I'm beginning to feel a little crazy. Am I assigning way too much importance to this notion that my thoughts can influence my sister's survival? Am I on some sort of power trip? Maybe I should stop thinking of them as MY cells and let Maggie take over. I bring this up, four months after the transplant, when I visit her in the dead of winter. She sits huddled in the window seat, wrapped in a down comforter, as scrawny and bald as a baby bird.

“Your cells are behaving poorly, Liz.” She wags a finger at me.

“Maybe we should stop thinking of them as mine,” I suggest. “Maybe they need me to get out of the way. Maybe they want you to take over.”

Maggie looks at me like I am deserting the ship and leaving it in the hands of the emaciated, lost-at-sea crew. I immediately retract the idea.

“Good,” Maggie says. “You have to stay connected to those cells, Liz. I need you to.”

field notes
•
feb 12

i haven't written in a while. i am so tired, so distraught, that the idea of writing makes me want to scream. instead, i will scream into these words. i awoke in the deepest sink hole of grief, unable to tolerate myself. i had 3 hours to kill today before the drive north to the hospital for a checkup and blood work. i was internally raging, feeling that whatever anyone said, it had no value to me. places in my lungs hurt the way they hurt when the cancer first came back—is it the graft vs host disease or are the tumors back? i climbed the stone steps to my art studio and tried to do some work to distract me from me. i stand in the studio that oliver built me for this art business that became something i never imagined it could. a success! i still don't think i'm a real artist, but as liz says, the proof is in the fact that my work hangs in people's homes all over the country. so i stood there in my church. curved ceilings, multiple tall windows, french doors leading to a porch with its own curves and designs. it was all lost on me today. i only saw the piles of my life that would need to be dealt with if i die. and i felt too tired to consider how i was going to dig through it all.

i walked back outside and stood in the winter sun. it was then that i realized i had completely lost touch with my breath, with stilling my heart, with grounding my feet on the earth. i did what i forgot to do; i held my left wrist with my right hand, and breathed from my pelvis to my heart and lungs, slowing my pulse. and then, it was time to go to the hospital. olly and i got in the car, me driving, heading north. we meet with the docs. the labs were stable. no reason to worry they say. live your life they say. so we headed to norah's farm, and she and i spent 2 glorious hours in her greenhouse, winter sun warm under the glass, music playing, planting the first of the season's endless trays of shallots, onions and scallions. wheel barrows of soil gave up their aromas as we poured warm water over them, stirred and then filled the starter trays.
to be working, to be planting, to be with my amazing daughter, i could feel my true self emerge from the gutter. there i was, intact. completely unscathed underneath psyche-crushing cancer.

note to self: remember to breathe. remember that i can return to my joyful self, remember to hold left wrist in right hand.

field notes
•
march 2

someone asked me how i am doing. i say, i don't know and i don't want to know. so instead i read novel after novel, losing myself for days in other lives. i cook, bake, walk endlessly, watch movies, sleep. any conversation about my health, my disease, makes my heart race. i try to breathe, to clear my head, to think of other things. a tiny cough, the recurrent discomfort in my chest, fatigue all remind me of what i am facing. i simply am uncomfortable in my own skin. i feel like a time bomb. i am in limbo between life and death, health and illness, joy and devastating sadness. as always, no one can say the right thing. if they agree with me when i talk about the poor prognosis, then i am sure i am going to die. if they tell me i will come through this, i am sure they are clueless idiots. no one can win. i have intolerance for anyone without a death sentence. and just so you know what NOT to say to your sick or dying friends, “no one gets out of here alive” and “we are all dying” are phrases that make me want to strangle the bearer.

IT'S HARD TO KNOW HOW
to help the people we love, whether they have a serious illness, or a headache, or a heartache. I've become clear about some ways NOT to help, at least how not to help Maggie. I've observed how she retreats into a shell when a well-meaning friend offers unsolicited advice about the curative power of juice fasts, or rambles on about the amazing clinic in Germany where her friend's hairdresser was successfully treated. I've watched Maggie's face twist into a look of wrathful disbelief when someone suggests that negative thinking, or grilled meat, or early exposure to pesticides might have caused the cancer. How could any of this help Maggie at this point in the progression of her disease?

Here is a good rule of thumb to follow if you are confused about how to help: Do not offer unsolicited advice to people who are sick. If you must, go ahead and ask them if they want to hear about promising new treatments or stories of those who beat the odds. Ask in such a way that the very vulnerable, very tired patient, or the equally weary caretaker, can easily say “No, thank you” to articles, books, and links to treatment plans and meditative YouTube videos.

One day, months after the transplant, I get a phone call from my father's old friend Pete and his wife, Jane. Pete and my father served in World War II together, and Jane became my mother's
friend. Pete and Jane and their kids are like family to us. Now Pete is ninety-one years old and almost deaf. Jane is in her eighties and forgetful about what she or the person she's talking to said several minutes previously. In other words, fast-forward a few years and we all will be Jane and Pete. Well, we would be lucky to be them. At a recent family gathering, they pulled up to the party in a little sports car. Pete was driving. Jane was sitting next to him. As one of their sons said, “She's the only one crazy enough to drive with him.”

My parents' old friends are calling with what they say is exciting news.

“What's so exciting?” I ask.

And then Jane begins to read aloud from a magazine she found at the dentist's office, about ten ways to beat cancer, starting with the “exciting news” that if Maggie refrains from using refined sugar and ingests large quantities of Japanese green tea she can totally heal from her disease. I try to interrupt, to tell Jane that Maggie is not attracted to these kinds of remedies, but due to Pete's poor hearing and Jane's indomitable spirit, she continues. “‘Lisa P. from Jacksonville, Florida,'” she reads into the phone, “‘was told to go home and put her affairs in order. Six months later, after working with Dr. M's regimen of eating only superfoods rich in antioxidants, her tests revealed the cancer was completely gone.'”

“Jane!” I yell, hoping that if I raise my voice loud enough perhaps Pete will hear and intervene. “Jane!” But she continues with the article. Every now and then Pete asks her to repeat what she has just read.

“You mean about the green tea?” Jane asks him.

“What?” Pete shouts.

“About the green tea?” Jane yells back.

“Yes! The green tea.”

“‘Green tea,'” she repeats, “‘has been shown to reduce tumors in many cancers. Craig S. from Bensenville, Illinois . . .'”

This goes on for a long time—Jane reading and Pete asking her to repeat what she had just read—until I finally get their attention. In a loud voice, I explain to them that I know about many of those treatments, have seen them work for some people, and if I ever got cancer would try them myself. Jane responds by saying, “Call me a cockeyed optimist, but let me just read you one more part of the article,” and she launches into a long description of coffee enemas.

I begin to feel as if I am in a
Saturday Night Live
skit about how not to help someone. I know my parents' friends are motivated by love. They can hardly bear to think of my sister being ill. They just want to help. We all want to help when someone we love is sick, or suffering a loss, or struggling in any of the ways we human beings struggle. But sometimes we go overboard and fill the awkward spaces with too much advice, too much talking. And sometimes, in our confusion about what helps and what doesn't, we pull back completely. We don't make the phone call, we don't visit, we don't bring a meal, because we don't want to say the wrong thing or intrude on someone's privacy. But avoiding the one who is hurting also goes into the how-not-to-help category.

So how do you best help? It's a lot simpler than you think. Not easy, but simple. First, get in touch with your own marrow—the deepest, truest part of yourself. Sit in the still dignity of your authentic self. Fill your whole being with the light of who you are. Then, just show up with nothing but the gift of your most authentic, unadorned, unafraid self. Because when one person is at home in his own skin, he can help the other person be less anxious too. Reach from the inside of you to the inside of the other. Remember what my friend told me before the transplant: “Don't be the
strong one helping the weak one. Don't be the fortunate one helping the victim. Give from your strength to her strength.
Strength to strength.
”

And listen to the person who is suffering. If he says he is scared, don't tell him to be brave. Instead, ask him to tell you about it. Listen with empathy. Just listen. Just be there. If she says she is dying, don't change the subject. Go there with her. Find out what she's feeling, what she needs. Be a vessel for her dreams and fears and plans. Don't preach and don't shrink back. Be real. Be open. Be strong, and find that kernel of strength in the other.
Strength to strength.

Before we hang up the phone, Jane asks me if I think Maggie is giving up.

“Why won't she try alternative therapies?” Pete asks. “What about meditation and prayer? Will Maggie consider that?”

“She's a lot like your mother,” Jane says. “Your mother gave up.”

I start to tell them that multiple chemotherapies, and full-body radiation, and a bone marrow transplant aren't exactly giving up, but Pete doesn't hear me, and so I stop talking. For a while we stay on the phone in silence. I want to tell them that indeed Maggie is so much like my mother. I want to ask Jane what my mom had been like as a young woman, what had made her so afraid of life, so afraid of her own magnificent self. I want to tell Jane and Pete how Maggie has used this awful disease to step boldly into her life, and how I believe, in taking the reins, she is honoring our mother, living out her dreams of liberation. I want to tell our old friends this, but it's not the kind of conversation that can be shouted to a ninety-one-year-old man and a cockeyed optimist over the phone.