Marrow (6 page)

IN GREEK MYTHOLOGY HOPE WAS
a spirit known as Elpis. She and other gods and spirits were kept in a jar by Zeus and entrusted into the care of the first woman, Pandora. Overcome by curiosity, Pandora opened the vessel. She lifted the lid, and out rushed the gods and spirits. The gods soared into the sky, abandoned the mortals, and went back to Mount Olympus. But the evil spirits remained on earth. Envy, toil, hate, disease, and all of their cranky and cruel cohort flew to the four corners of the world. Realizing what was happening, Pandora hastened to close the container. Too late! All had escaped, except for one. Hiding in the vessel was Elpis . . . hope. It is said that Elpis remained in the jar to help human beings now that evil had been unleashed. Whenever the world seemed too much to bear, we humans could open the lid and call on Elpis for faith and optimism.

I call Maggie from the porch of our little cottage overlooking the Caribbean Sea. I expect to hear a more hopeful tone in her voice since the last time we spoke in the chemo suite. I know she has heard from the nurse that our marrow matches and transplant is now possible.

“Is this Maggie-Liz?” I say into the phone. We'll end up using our combined blood-sister name all through the transplant process, but at the moment she's in no mood for lighthearted banter. She's
not ready to sign on for the transplant, she says. She's not sure she can bear to continue the treatment. Her hair is falling out. She's constantly nauseated and can't eat. Her fingers feel numb. She's lost her fighting spirit, she says. Why keep fighting when all signs point to defeat? Why hope? Hope only makes it worse when things fall apart.

“And they will fall apart again,” she says. “I'm sorry to sound so morose, Liz.”

I tell her the story of Elpis. I tell her how the Greeks depicted hope as a young woman carrying flowers in her arms. Elpis was said to bear the energy of spring, of green sap rising in the veins of trees, of the smell of rain on dry earth. Her opposite, Moros, spirit of hopelessness and doom, was a hunched man cloaked in black.

“Who do you want to hang around with?” I say into the phone. “A girl with flowers, or a really depressed guy named Moros?”

“You know I love flowers,” Maggie says. “But I hate when people tell me to have hope. As if everything's going to be OK if I just have a positive attitude.”

“But that's not what hope is about. It's not about everything turning out OK. It's about being OK with whatever happens.”

“Easy for you to say.”

I have noticed how quickly Maggie angers when anyone glosses over the rigors of the transplant and goes straight to its potential success. I think she feels abandoned when others spout hope. She thinks we don't understand the depth of her fear, the truth of the risks, the looming mountain of physical pain and exhaustion. That we have left her all alone to scale the mountain. That hope in the face of such a daunting task is dumb.

“Elpis was no dummy, Maggie,” I say. “She knew the evil spirits
would get under our skin and convince us the world is doomed, that we are doomed. She stayed behind in the jar so we could take swigs of optimism when we needed it. Because hope is energizing, and despair is crippling. You need the energy of hope right now. It will help you make a decision. It's like drinking coffee. Suddenly the clouds part.”

I never know if I'm saying the right thing. I never know if Maggie is even listening, or if I'm stating the obvious or grating on her nerves like some Pollyanna evangelist.

“So what should I hope for?” Maggie asks, her voice dulled by grief. “That the transplant won't kill me? That if it saves me I won't feel like crap for the rest of my life? That the rest of my life is more than a few months?”

“You can hope for the strength to handle whatever comes. Maybe it will be a cure. Maybe it will be pain. Maybe it will be death. Nobody knows what will happen next—not the doctors, not the websites, not you. We don't even know what
should
happen. Life is more mysterious and meaningful than our pint-sized brains can fathom. That's what hope is for me—trusting in the mystery.” I almost whisper those last lines. It takes some hubris for a well person to wax spiritual to a sick person.

“OK, now you sound like Walt Whitman,” Maggie says. “Or like Marsh quoting Walt Whitman.” (Throughout our childhood, my sisters and I never called our mother Mom. We called her by her name, Marcia, or her nickname, Marsh.) Maggie assumes our mother's English teacher voice and quotes Whitman: “‘And to die is different from what any one supposed, and luckier.'”

“Yeah, like Walt said,” I laugh. I don't care if she's making fun of me. At least I know she's listening. She may even be taking
Whitman's words to heart. I take a risk and say, “You know, to live is pretty lucky too. And to live with hope until you die—that's the luckiest.”

Maggie doesn't say anything. A breeze lingers on the porch where I am sitting. It smells like lemon blossoms. I feel the hot, tropical air on my bare skin. I close my eyes and imagine Maggie in bed, under the covers, weary and worried, looking out at the gray sky and frozen fields.

“You still there?” I ask.

“Yeah, barely.” And then she says, “It's kind of amazing we're a perfect match, isn't it? I didn't think any of the sisters would match. But I really didn't think it would be you.” I hear the life returning to her voice. I hear energy and humor. And I hear the old, edgy stories of our sisterhood.

“I know,” I say. “It's a shock. But it also isn't. It feels like a privilege for me, Maggie. And it feels like our destiny.”

“Really? Destiny? But we're so different. I thought it would be one of the other girls.”

“I'm gonna try not to take that personally,” I say.

“No, I don't mean it that way, Liz. It would be an honor to get your marrow. To spend the rest of my life as Maggie-Liz.” Now I hear wonder in her voice, and terror and tears.

“Well, I want you to know I'm one hundred percent in,” I tell her. “If you say yes to the transplant, I will too—with all my heart. But you also don't have to go through with it. Whatever you choose to do, I'll stand by you every step of the way. We're in this together now.”

Already I can sense a new person taking form as we speak: Maggie-Liz. The love child of our willingness to give and receive,
to lay down the past and pick up something new, to say no to fear and yes to hope.

“Here's to Maggie-Liz,” I say, pouring hope from the jar and offering a glass to Maggie across the sea.

“Here's to hope,” Maggie says.

field notes
•
march 5

now that it's a possibility, i have to decide about the transplant. i feel trapped with no way out. damned if i do, damned if i don't. i am frozen in place. my hair is falling out, i'm down to 95 pounds, i hurt everywhere. in my body and my heart. today i saw my daughter. we were driving down the road with the intention of going shopping. my only goal for the outing was to stay positive. but as i drove, i began to break down and we pulled over when i could no longer contain my crying. i was tired of performing like i was stable. like everything was gonna be alright. i was exhausted from being perky, from hiding my hurt that i probably won't be around to see my kids' weddings, their homes, their children. i won't be there to help them. as i wept, i told norah, i don't know if its appropriate for you to witness this part of your mother's process. she held me and we cried together. after we cried, we just sat there, until she asked me to consider going through with the transplant so we could have more time together. even a short time. i felt something move inside my heart. i felt the presence of hope. maybe this was that spirit liz was talking about. elpis. for the first time i really considered giving the transplant a try. it made me weep again, but this time because i felt a lightening of the deep grief. i felt the presence of something—a tiny flicker of a fighting spirit, a tiny flicker of hope.

WE MEET UP WITH FRIENDS
in the Caribbean. They like to snorkel, so we hire a boat and travel an hour out into the open sea to a blue hole. A blue hole is like a vertical cave—a circular, steep-walled chasm layered with striking shades of blue water. Dark inky blue down in the deep hole, and light-infused aqua closer to the surface. Fish are drawn to the plant growth around a blue hole. And not just colorful little fish, but also hammerhead sharks and giant groupers and stingrays.

I am terrified. The boat anchors at the rim of the blue hole. Everyone else in the group swims right into the yawning cave, cavorting with the fish and motioning to each other when they spot something “interesting.” I lurk at the edges until I see a fish too big for my liking, and then swim back to the boat, fast. I rationalize that if we were supposed to see underwater life, God wouldn't have hidden it in a deep, dark hole.

Sitting on a long bench in the boat, alone except for the driver, who is sleeping in his captain's seat, I think about hidden things. Hidden life under the sea, under the ground, under the skin. The buried marrow in my bones and the secret stories in my heart. What are we supposed to see and hear, show and tell? Are things hidden for our own good, or is the human journey about going into the shadows and searching for the deeper truths about ourselves and each other, about life itself?

When I was a midwife, I taught childbirth classes to the mothers- and fathers-to-be. As I delivered more and more babies I discovered that the people who transcended their squeamishness and paid close attention during the anatomy lessons were the ones who had speedier, easier labors. To encourage them to get comfortable with the inner workings of the female body, I would assign the same homework at the end of each class: fall in love with the uterus. This didn't appeal to a lot of people—women and men alike. Even after I explained that the uterus was gorgeous and extraordinarily intelligent, they didn't want to peer too closely at the pictures of a glistening red organ shaped like a pear and located between the bladder and the rectum. It was all too graphic and intimate.

I promised the women they would be less likely to need drugs or other interventions if they could visualize the uterus and understand the mechanics of the cervix—that little muscle that must stretch from a clenched fist to the size of their baby's head. If you fight the pain, if you resist the contractions, you cause even more pain. I told them that labor is like life and life is like labor: sometimes the most painful experiences deliver the best things—new life, unexpected insight, the chance to stretch and grow. This was the greatest lesson I learned in my years of delivering babies: don't strain against pain; learn its purpose; work
with
it and the energy of the universe will assist you.

And so I would bring to class medical charts and models, and show videos of the uterus in labor, but the queasy and the anxious would cover their eyes as if I were showing a horror film. The insides of the body were as foreign to the couples in my childbirth classes as the fish in the blue hole are to me. I look across the span of water and watch my husband and friends enjoying the splendor
of what lives beneath the sea. I'm jealous of their courage. I know my fear is irrational. No one has ever been attacked snorkeling in this blue hole. I'm probably more likely to die of sunstroke in the boat. I'm denying myself the elation of this once-in-a-lifetime experience. I move to the side of the boat and prepare to jump back into the water. But I'm too scared.

Instead, I stretch out on the bench, close my eyes, and think about Maggie, and about being her marrow match. I put my hands on the middle of my hips and push hard with the heel of my palms until I feel the big bones beneath the layers of skin and fat and muscle. Those bones are only inches from the body's surface, but they seem as far away and unfathomable as the bottom of the sea. Suddenly I want to learn everything there is to know about bones and marrow, blood and stem cells. If Maggie says yes to the transplant, I want to fully participate without fear. Just as I encouraged my pregnant couples to fall in love with the uterus, I want to fall in love with the marrow of my bones. I have to laugh—I've walked around in this body for more than fifty years and I have no idea what goes on in the hidden blue hole of the bones. Time to change that. If getting to know the uterus helps ease a baby into the world, learning about marrow might help ease my sister into new life.

I may not be courageous enough to explore a hole in the ocean; I may not want to fall in love with hammerhead sharks. But I am ready to excavate the marrow of my bones and expose the marrow of my soul for my sister. Bobbing in a boat in the middle of the sea, I feel a fierce kind of love for Maggie that takes me by surprise. I knew I loved her, but not like this. We've spent most of our lives circling around each other, each of us feeling imperfect in the mirror of the other's life. Now my parents' words come back
to me: “Our love gave Maggie her life the first time. Your love can give her a second life.” So this is what they meant. They weren't talking about throwaway proclamations of affection at the end of a phone call. They were talking about going deep. And not just into the bones, but also into anything hidden and unhealed between us.

I hear the others swimming toward the boat. I sit up and wave to them. They will have stories to tell me about life in the underwater caves. And if all goes well, I will too. Maggie and I will swim together into the blue holes of our bodies and souls and bring back tales from the deep.

A FEW WEEKS LATER, I
buy a big hardcover book about cell biology and try to carve some new neural pathways in my brain in order to understand the most basic information. Paying attention to the text requires my blasting through a mountain of mental resistance. Math and science have always been a struggle for me. If I were a child now, I'd probably be diagnosed with a learning disability. It sure felt that way all through school. I had my first experience of math-induced brain freeze in elementary school when confronted with long division, and full-on mental paralysis in junior high when it came time to memorize the periodic table of the elements. But now I am motivated to fall in love with bone marrow and stem cells, so I stay up late every night, reading
Essential Cell Biology
.

I discover that although bones seem as dead as rock, they are actually super alive. They are like living layers of geological sediment protecting a molten core. The core of the bones is the marrow, and in the marrow are the stem cells, the source of life. Stem cells are also called mother cells because they have the potential to create many types of new cells that your body needs in order to live.

The human body is composed of one hundred trillion cells—give or take a billion—with each cell assigned a specialized function, like skin cells, blood cells, muscle cells, organ cells, brain cells. Specialized cells do not live very long, so the body needs to
replace them continuously. I used to think of my body as a constant—a trusty chariot that would cart me around till death do us part. But in actuality, my body today is not what it was yesterday or what it will be tomorrow. Humans shed and regrow skin cells every twenty-seven days, making almost a thousand new skins in a lifetime. Each day fifty billion cells throughout the body are replaced, resulting, basically, in a new chariot each year. Every second, 500,000 cells die and are replenished. Red blood cells live for 120 days; platelets live for only a week; white blood cells live for a mere eight hours.

And then there are the stem cells that live deep within the bone marrow. Unlike specialized cells that die and must be replaced, stem cells are self-renewing—they divide in unlimited numbers and become new cells. Some of those new cells remain stem cells, and some leave the bone marrow and flow into the bloodstream, magically morphing themselves into whatever kind of specialized cells the body needs. A stem cell is like a mother. She sends her children out into the world to become who they were born to be.

When doctors harvest bone marrow from a donor, it's the stem cells—the mother cells—they are after. The premise is pretty simple: Destroy the bone marrow in the cancer patient and replace it with several million healthy stem cells from a donor. Then do everything possible to help those donor stem cells engraft in the cleaned-out cavities of the patient's bones. If all proceeds according to the plan, the mother cells make themselves at home in the new bones and begin to self-renew, building a new bone marrow factory where baby blood cells are produced and sent into the bloodstream, bringing the patient back to life.

Sounds like a good plan, but it's also a dangerous one, because
in preparing the patient for the transplant with high-dose chemotherapy and radiation, healthy cells are collateral damage. The patient must endure a near-death experience in order to live. Sitting in the dark quiet of my house, underlining sentences in
Essential Cell Biology
, I can almost feel the river of life and death, change and rebirth, flowing in my bloodstream. I shut the book and close my eyes and say a quick hello and thank-you to my stem cells just in case we'll be calling on millions of them soon.

field notes
•
march 20

i have always said i want to come back in my next life as an eggplant. a big stupid purple lump languishing in the sun, oblivious to the complex messes us humans make. until i met denise. now, i am considering withdrawing the eggplant request and asking for reassignment; i might want to come back as a human again. i had another round of pre-transplant radiation at the hospital today. on the way home, we stopped at lou's restaurant for lunch. wearing my saliva-smelling, hot, steamy mask, we sat at the counter and i fell apart, letting the tears soak the mask. denise, my waitress, a cancer survivor herself (who knew?), came to my rescue. one look at my bald head and my mask, and she came right over, first with a hug. then a quick lesson in breathing: in through the nose, out through the mouth, then a pep talk, then she gave me a book of quotes. then a caramel cupcake. denise pointed out this quote from gilda radner: “if it wasn't for the downside, having cancer would be the best thing and everyone would want it.” i used to hate when people said things like that. but it's true. this disease teaches you what's important, and as it turns out it's the things you already have. your kids, your mate, your home, a good meal, a good friend, a good day. but here's my favorite quote from the book, by roger ebert, who has a terrible, face-eating kind of cancer: “i believe that if, at the
end of it all, according to our abilities, we have done something to make others a little happier, and something to make ourselves a little happier, that is about the best we can do. to make others less happy is a crime. to make ourselves unhappy is where all crime starts. we must try to contribute joy to the world. that is true no matter what our problems, our health, our circumstances. we must try.”

so, i will try. i will try to proceed with good cheer because “to make others less happy is a crime.” i don't want to be a criminal! “to make ourselves unhappy is where all crime starts.” that's something i am just beginning to understand. i hope i'll get some more years to live by those words.