Authors: Elizabeth Lesser
ONCE AGAIN WE TRAIPSE INTO
the cancer ward at the hospital to meet with the oncology team. Their team: one doctor; one nurse; one transplant coordinator. Our team: Oliver, Maggie's partner; Norah and Hayden, Maggie's kids; me; and, of course, Maggie, her clothes hanging off her tiny body, her eyes looking even larger and darker than usual. The teams wear uniforms. The nurses are in light green scrubs; their masks hang below their chins. The doctor wears his white coat, his white hair neatly trimmed. Team Maggie is a motley crew. I've come straight from New York and I look like itâblack pants, black sweater, black boots and coat. Maggie's son, Hayden, is a forester; he's dressed in a red wool sweater, canvas pants, and steel-tipped boots. When I hug him, he smells of pine trees and chainsaw grease. Her daughter, Norah, owns a large working farm; I've always admired the way she still dresses like a college girl in whimsical outfits, even though she spends her time fixing tractors and feeding pigs. We crowd into the small, antiseptic examining room. We are talking and joking, happy to be with each other despite the jittery circumstances. Our noise and textures and odors bring the forbidden mess and germs of the world into the hospital. We seem completely out of place, until I remind myself that this is what the place is made forâthe mess and germs of being human.
It's time for Maggie to decide. We take our seats. There are so
many of us I double up with my nephew and we hold onto each other. The doctor reviews the options: if Maggie chooses not to proceed with the transplant, she will die soon, and if she chooses the transplant, it may kill her. Of course, he doesn't come right out and say thisâhe never doesâbut that's the hidden message in his vaguely worded script. And if she survives the transplant, we ask again, are there any numbers of months or years to hang this decision on? Again, vague answers that we have already heard.
Although people surround her in the crowded room, I know Maggie feels alone, wrestling with conflicting magnetic pulls. The pull to live for as long as possible, here on earth, with us. To experience the softness of another spring, the humid heat of summer, the winter's shocking cold, the joy of love, the sadness of loss, the beauty, the pain, the mess. And then, the other pullâthe pull to die, to surrender, to say no to more chemotherapy and radiation and transplant and months of drug-induced nausea and isolation and the unrelenting anxiety that the cancer may return. To say good-bye now, to leave with some dignity while she still can. I don't know which path I would choose or she should choose. I reach over, stroke her arm, and silently pray.
I say “silently” because prayer is not something Maggie relates to; that's putting it mildly. Last week, our born-again cousin e-mailed and pronounced she was praying for Maggie's health. This infuriated Maggie, as if without asking our cousin had conscripted her into the faith. Maggie called me immediately to rail against the stupidity of religion. I proposed that our cousin's beliefs might not be what she imagines them to beâthat intelligence and spirituality are not diametrically opposed. That you can be a legitimate, thinking person and still listen to Christian music on the radio.
“This is why I'm surprised you and I are a perfect genetic
match,” Maggie replied. “What if I become more spiritual if we do the transplant? If my blood is your blood?”
“Yup. Before you know it, you'll be speaking in tongues,” I say.
“No, really, Liz. Will I suddenly believe in God? That might not be a bad thing at this moment. What do you believe in anyway? Maybe I should know this before I sign on the dotted line.” She's never asked me this before. It's not an easy question to answer, but this would be a good time to try.
I tell her what I don't believe first. I don't believe our brains can fully fathom God, or come up with iron-clad answers to the big questionsâlike who we are and why we are and where did we come from and where do we go? We can't think our way through any of those questions. We can try. I love the way we tryâscience, art, religion, wine, mountain climbing, whatever. But so far, no one has definitively answered anything. So I say to Maggie, “When I pray, I pray to just settle down and trust the mystery. Prayer for me is relaxing into the mystery.”
“Really? That's what prayer is?”
“Well, maybe not for everybody, but it's not my business how other people pray. To me, prayer is letting go of fear and relaxing into the vast, eternal mystery. I don't care what you call that mysteryâGod, consciousness, universe, spirit. Those are all made-up names for the unnamable. All I know is there's nothing better than that wide-open, opinion-busting, all-things-are-possible, everything's-OK feeling of prayer.”
What I want to say but I don't, because it's probably not the right time, is this: “Who knows, Maggie, if you decide to forgo the transplant, maybe you're the lucky oneâmaybe you're being called out of this world for glorious reasons, leaving us fools behind to slog our way through another day. Maybe it's not a tragedy for
your kids. Maybe they'll spin their grief into strength, maybe you will help them flourish from the other world. Or maybe you'll choose to go ahead with the transplant and you'll outlive us all and prove that miracles are possible. Maybe this is all happening for you to finally stop doubting yourself and to step boldly into who you always were meant to be. Maybe you'll become a world-renowned artist, or you'll wander away and become a monk. We just don't know. That's what I believe. I believe we dwell in mystery, and although that mystery often seems to suck, when I pray, I wake up, and I know that it's all for something, that nothing is wasted, and it's all good.”
Now we're here in the examining room, and I'm taking deep breaths and calling on that mystery as we wait for Maggie to make up her mind.
“What's it going to be, young lady?” the doctor asks, putting his hand on Maggie's shoulder. “Shall we prepare for transplant?”
And without missing a beat, Maggie looks around the room at us, her motley team, takes a sharp breath in, and says, “OK, let's do it.”
We drive away from the hospital. It's one of those early New England spring days that can't make up its mind. It's raining in the parking lot, but by the time we get onto the highway it's snowing. Oliver is driving. I am in the passenger seat. Maggie is stretched out in the back. I turn around and ask, “How are you doing?”
“Shhh,” she says, putting her finger to her lips and closing her eyes. “Shhh, I'm relaxing into the mystery.”
TO PREPARE FOR BEING THE
bone marrow donor, I have been getting every test known to humankind: blood tests, stool tests, urine tests, chest X-ray, electrocardiogram, gynecological exam, mammogram, HIV test, even a test for syphilis. And a long health interview that poses intimate questions about everything from my sexual history to my mental stability. They want to know if I have ever had or have now any medical problem that would make it difficult for me to undergo the donation process or that could result in my cells infecting Maggie with a disease. She will have no immune system by the time my stem cells are transplanted into her bloodstream. I must be as healthy as possible to be a donor. They take so much blood for the tests I wonder if any will be left for the transplant.
Donor stem cells can be harvested directly from the bone marrow or from the peripheral blood, which is the blood flowing in the veins. “Harvest”: that's what they call the collection of stem cells. I like that word. It has a homegrown ring to it. This helps me shift my imagery away from a television hospital drama to one of those Italian films where gorgeous people sit at a rustic farm table on a late summer evening, eating food from the fields.
After my tests come back, it is determined that the stem cells will be harvested from my peripheral blood. I read the literature given to me by the very kind transplant nurse at the hospital. We agree
that it would help to have a PhD in cell biology to understand the information sheets. As best as I can tell, this is what they say: A successful stem cell harvest results in the harvesting of at least two million stem cells, although the preferred number is five million. This is a huge amount of stem cells compared to the number normally circulating in your bloodstream. To stimulate cell growth, the donor is injected with a growth factor every day over a period of five days before the harvest. This causes a rapid increase in cell production, so much so that the bone marrow is forced to push millions of stem cells out of the marrow and into the blood. On the fifth day the donor returns to the hospital, an IV is placed in a large vein in the arm or chest, and for up to six hours the blood is cycled through a machine that separates the stem cells from the other blood cells. The stem cells are retained, while the rest of the blood is returned to the donor through the same catheter. During the process the donor's entire bloodstream is circulated over and over through the machine. The process can be completed in one day, but often needs to be repeated daily for a few days until enough stem cells have been collected.
For now, I ignore the parts of the information sheets that describe the painful side effects and potential risks of the procedure, and focus on the more miraculous aspects of marrow and cells and blood. I am becoming a devotee of blood. I feel like a vampire, but a nerdy one. A few weeks previously, one of the doctors administering my tests told me, “After Maggie finishes all of her chemotherapy and radiation, she will no longer have any of her own stem cells. And after the transplant, your stem cells will keep her alive. They will become the source of her blood, and your blood will be her blood for the rest of her life.” I hadn't really understood what the doctor meant. Now I do.
As I continue to read, I zero in on two big risks Maggie will face after transplant: failed engraftment and graft-versus-host disease. Failed engraftment occurs when the infection-fighting system of the patient recognizes the transplanted donor stem cells as being different and rejects them. Graft-versus-host disease occurs when the transplanted donor cells regard the recipient's body as foreign and go on the attack. Both complications could lead to Maggie's death.
“Rejection” and “attack”: those two words appear in all the literature about bone marrow transplants. They seem so familiar, those words, especially in the context of my relationships with Maggie, with my other sisters, in all my relationshipsâin all human relationships, for that matter. Rejection and attack, that's what we so often do when we see each other as different, when we feel threatened, out of our safety zone, or just clueless about how to share the human experience. We interpret difference as danger, and in covert or obvious ways, we reject or attack otherness. Sometimes we pull back, we protect, we shut down, we reject. Other times we try to control the other, bend the other, and when we can't, we give in to our fatal attraction to aggressionâwe attack. Even when we adore each other, even if we know better, even if we make it our moral practice to tame the tendency to reject or attack, these are difficult instincts to overcome.
They're certainly difficult instincts for me to overcome. Whether it's the way I want to excommunicate my husband for taking up golf, or my knee-jerk animosity to those with different political opinions, I spend my days self-correcting the instinct to reject or attack. We all know there is a better instinct, a bigger perspective, a deeper pull: to accept, to embrace, to lay down the arms, to take the first step toward tolerance or forgiveness. Raise your hand if
you've mastered this. Certainly as a species we haven't. On the bigger stage, rejection or attack starts as a small act of otherizing and explodes into feuds and war. In our daily lives, most of us aren't literally violent, but we do violence to each other's souls when we shut each other out or attack each other's personhood. How interesting that even at the smallest cellular level there is both the urge for peaceful coexistence and the instinct to reject or attack.
If after the transplant my stem cells become the source of Maggie's blood, and have the responsibility of keeping her alive and well for the rest of her life, it seems to me it might be good to do something to bolster my cells' urge for peaceful coexistence and mellow out their instinct to attack. And Maggie tooâher body will be on high alert for alien invaders. Can we do somethingâpsychologically, emotionally, spirituallyâto assist the medical aspects of the transplant? Multiple studies (some done at the very hospital where our procedures will be performed) have demonstrated the power of the mind and emotions in healingâin lowering blood pressure and stress hormone levels, relieving pain, improving immune functioning, and helping patients reverse serious clinical conditions. Surely these findings suggest that Maggie's chances for a good outcome could only be increased if she and I paid attention to our peace of mind and emotional openness before the harvest and transplant.
I leaf through the information sheets, looking for anything that comes close to this line of thinking. Maybe some suggestions on how to talk to each other about our feelings or fears, or the ancient baggage we may want to drop before exchanging blood? But there's nothing there. We'll have to make it up ourselvesâfigure out a way to hold our history up to the light and move beyond our lifelong tendency to reject or attack. Is there a way to help me gen
erate abundant and willing stem cells, and to help Maggie receive the cells with openness and trust?
Perhaps if Maggie and I can sit together and, with the help of a therapist, retrace our years of sisterhood and clear up old wounds or misconceptions, we can affect her body's willingness to accept my cells. We can call on my cells to make a peaceful passage into her bloodstream. We can go into the medical procedures better able to give and receive, having put down never-expressed grievances, secret shame, made-up stories, blame, or judgment. Before the bone marrow transplant, we could try for a soul marrow transplantâeach of us setting aside the old stories that have kept us separate so that a more truthful intimacy can grow.
I look for a way to describe my intent without using words like “therapy” or “ritual.” I don't want to scare Maggie off. I find the perfect way of introducing the idea in my parents' holy text, the
New Yorker
magazine. I clip a cartoon out and send it to Maggie. This is something both my parents did, mailing us girls carefully scissored
New Yorker
cartoons, sometimes with comments, sometimes just a clipping in an envelope. The cartoon I send Maggie shows two women talking to each other. One says, “I've never forgiven him for that thing I made up in my head.” The other looks on, knowingly.
Maggie calls me. “What was that cartoon all about?”
I tell her my idea of helping the stem cells make a peaceful advance into her bloodstream, about the possibility of rejection or attack, and of the mind-body studies that prove the connection between what we think and how we heal. “We've made up a lot of things in our heads about each other,” I explain. “Maybe if we talk about those things, maybe we'll find some stuff to let go of, to forgive, to clean up and clear out before the harvest and the trans
plant. What if we come out of hiding and go for the deep stuff?” I fully expect her to reject or attack the idea. As it turns out, that's just a story in my head.
“I love that idea,” Maggie says. “I'm in.”
Before we choose a therapist Maggie and I come up with a list of questions we want to explore in our first session:
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?
In framing the questions and speaking them aloud to each other, we feel the answers rushing in, like waves coming to shore.
“See,” Maggie asks, “who needs a therapist?”