Archive for the ‘Healing’ Category

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For Paul

April 19, 2012


The last time I saw Paul it was early the morning of February 12, the day I flew from Cebu to Hong Kong on my way home to the States. The doorman of the apartment building where we were staying called to announce the taxi’s arrival. I peeked into Paul’s room, not wanting to wake him but also hoping for the chance to say goodbye. He opened his eyes and popped out of bed. Well, “pop” doesn’t really describe the way he gingerly rolled to a seated position, swung his legs over the side of the bed, then tested his weight on the floor before standing. The tumor invading his spinal cord had been slowing him down, to put it mildly. “Give me a sec,” he said shuffling off to the bathroom.

Paul, T, and I had been roommates in Cebu, the most developed island in the Central Visayas, the Philippines, for 10 days. Paul and T began their rather tumultuous journey there weeks before my arrival and would stay for weeks beyond my departure. Our time together was a bit of a reprieve, at least for me, a parenthetical moment of time out of time marked by fresh air, blue skies, organic food, visits to our friend Eleanor’s organic farm, and hours and hours of treatment with the photodynamic therapy (PDT) medical laser.

After a few days in the penthouse we rented from our new friend Eleanor, we were like siblings, sometimes squabbling over who got to use one of the coveted internet cables or griping about dishes that weren’t washed well enough. “I hate when people just swish their hand over a dish and don’t wash it,” Paul reminded us over and over again. “My daughters do that all the time. Swish, swish, swish. I like to use a cloth and really hot water.” Paul was brought up in Michigan but had lived in Texas for many years. He would ramble on incessantly with his Texan twang about any and every topic that came to mind. We heard his dishwashing lecture at least once a day. But then Paul became too tired and weak to wash his own dishes, so T and I took over and Paul never complained again about a dirty spoon or plate that might have missed quality control.

“Thank you,” he said instead. He said it all the time. He was appreciative of every kindness and act of generosity or hospitality that came his way. When Paul thanked you, you know he really meant it.

And that’s what he said to me as he put me in the cab that morning. “Thank you for bringing so much sunshine, for your grace, and love, and singing.” The tears pricked at my eyes.  “We are going to beat this,” he said to me. “We’re going to be just fine.” I hugged his frail frame and looked into his shining blue eyes one last time, and then the taxi pulled away. I knew I wouldn’t see Paul again, and it hurt. It still does.

The funny thing is Paul drove me nuts when I first met him at the hospital in China. He arrived sometime in the fall, late October or maybe early November, eager and excited to try a new treatment that would halt his advanced melanoma. Before Paul dove into the ultrasound bath and other treatments, Dr. Wang scheduled him for staging tests including a full PET scan. The results came back on Paul’s 50th birthday, and they were devastating: the cancer had spread everywhere. Instead of dealing with a few lesions, they counted up at least 40 tumors from his brain to his liver along his back and arms, spinal column. I don’t really know how Paul handled this news in the privacy of his own thoughts and feelings, but he managed to eat the birthday cake the nurses had bought him and later he went out for a birthday dinner with the Western gang.

If your door was open, Paul would wander in, sit down and talk. Politics. His daughters. His ex-girlfriend. His auto shop. Dirt bikes. Stocks. Cancer treatment. He was especially excited about a new therapy in clinical trials involving the use of a red dye originally from India called rose Bengal. He talked and talked. Often he would repeat himself. I admit that many times I wasn’t in the mood for Paul. I would smile and nod and interject with questions at the right moments while I busied myself with small tasks like hanging the laundry to dry or chopping vegetables for a soup. Frankly, I had become covetous of my space and solitude. My little hospital room was my sanctuary, and I fear I wasn’t always so gracious or welcoming to Paul, who was really all alone thousands of miles from home, in the last months of life, and needing connection and camaraderie and love and friendship and forgetting, just like most of us.

As we got deeper into the month of November, a wave of nostalgia seemed to roll over T. The fact that she was still in China, still away from home, and would miss Thanksgiving was really bumming her out.  T was our world-savvy traveler, the journalist who thrived on getting the real stories in some of the most turbulent parts of the world. She surprised us all with her tenacity for holiday tradition. She sank her teeth into the fantasy of a big Thanksgiving meal and just wouldn’t let it go. Really, where would we get a turkey in Houije Town, Dongguan, China, where the local supermarket sold dog meat and chicken feet? There was also the problem that most of us were in some phase of treatment, from chemo to immunotherapy to receiving sonophotodynamic therapy and not necessarily in top shape to hunt all over China for a turkey.

And then a miracle happened. The hospital director told us that he would like to make a Thanksgiving celebration for all the Western patients and our staff of the 16th floor. Cassie, one of our translators, came around with a pad of paper to take our Thanksgiving dinner suggestions. Paul happened to be visiting my room at the time. Her list included a daunting menu: chestnut stuffing, gravy, candied sweet potatoes, cranberry sauce, mashed potatoes, biscuits, apple pie, and of course turkey.  Paul talked all about the necessity of his special Cajun turkey basting butter while Cassie nodded, raised her eyebrows, and seemed helplessly lost by it all. Then Paul made a pitch for string bean casserole. Cassie wrote it all down, then looked at us seriously and asked: “What’s string bean casserole?”

I had to draw the line somewhere. How was a Chinese cafeteria cook who only knows woks, steamers, and deep fryers possibly going to understand Campbell’s cream of mushroom soup? Besides, there’s just something wrong about any food that requires a can of soup as a central ingredient. When it became obvious that the hospital cook wouldn’t turn into Martha Stewart in a day, we realized the burden of preparing Thanksgiving actually fell on our shoulders, or rather, largely on T’s. Somehow she enlisted Paul as her sous chef and off they went to the enormous Tesco supermarket for butter, flour, sweet potatoes, onions, garlic, and four or five huge bags worth of groceries to feed 30 people.

The turkey arrived on Thanksgiving morning, frozen, and Paul lovingly prepared the bird. In fact, he was responsible for much of the Thanksgiving meal. Between trips to the hospital canteen kitchen, whose greasy floor was as slippery as an ice skating rink, Paul would lie down for cat naps.  Kevin, Gai, and I laughed among ourselves about Paul’s questionable cooking skills and doubted how it would all turn out. I mean, the man entrusted with the centerpiece of the meal was the same one who had burned at least three pots of rice when he first arrived in China and lived on cans of tuna. But Paul threw himself wholeheartedly into the task. I realized that this was true to his nature: he loved to be of service and he took on Thanksgiving with all of the seriousness, dedication, good humor, equanimity, precision of planning, and irrepressible positive spirit that he tackled every problem he faced, from fixing a washing machine to cooking a frozen turkey using a surgical syringe as a baster to treating end-stage melanoma.

When Paul presented us with a perfectly roasted, golden-skinned, juicy, well-seasoned turkey that evening I think we all realized how much we underestimated him. His toast to the crowd of 15 Westerners and 15 Chinese was just as spot on, conveying the warmth and meaning of the holiday and saying how much he appreciated this family of ours at Renkang Hospital.

It’s not my intention to eulogize Paul, to elevate him to a saintly status or anything like that. I simply want to spend time with him again by reliving these memories. A few weeks ago Paul entered my dream. We were in Cebu, and he showed up looking bright and healthy. “I’m back!” he sang out gleefully, “I feel great and I’m ready for more treatment.” I looked at him closely. He was glowing and beautiful, but something didn’t feel right. “Paul,” I said slowly, “I don’t believe you. I don’t believe that your body’s okay.” Somehow I couldn’t turn away from the truth, and I held his gaze with a mixture of compassion and love. Seconds later I woke up with a start and told David about the dream.

That night I called Paul’s nephew, Broc. T had sent news that Paul had entered hospice care about a week earlier, and the dream made me anxious to find out about his condition. Broc told me that Paul had died two days earlier. I let out a big sigh. I suppose I had known from the dream that Paul had crossed over, but hearing the news was still hard. It seemed to happen so fast too. Just weeks earlier we were in the Philippines, planting trees at Eleanor’s farm, going out to dinner, having heartfelt and silly talks, and becoming such good friends.

You see, I really grew to love Paul. Living with him those 10 days, I came to see his goodness and light and humility. He was so open to people, talking at great length with the building’s maintenance man or whoever came across his path. He had time, interest, and undivided attention for everyone. I even became fond of his constant stream of conversation. It made me laugh! Paul once told me that he had had so much radiation to his brain that his memory had been fried. He couldn’t remember what he said, so he said it again, and again. Sometimes I would listen to his stream of consciousness while he was getting his laser treatments. If he wasn’t asleep, he would ramble on and on, sometimes for hours, about anything that crossed his mind. One day I stood outside his door and listened to him explain to our Filipino nurse all about the strong body odor of kids from his high school who ate lots of curries. Paul must have graduated from high school a good 32 years ago, what was he talking about? Oh but it made me laugh.

I laughed with him when sometimes I wanted to cry for him. As the tumor pressed more on his tailbone, he began to lose function of his bowel and bladder. Seeing a grown man in adult diapers is not an easy sight, and it reminded me of my father’s last months. Even in pain, even with the potential humiliation of losing control of such a primary function, Paul kept it light. He wasn’t trying to put on a good face. He really was light. I heard him once talking by Skype to a buddy of his who had been paralyzed years ago in an accident. He told this friend how much respect and admiration he had for him and what he’s had to endure in life. “Me, I have a little back pain and I act like a baby,” he said self-effacingly.

Oh, Paul. This fucking disease. I know it wouldn’t be in your nature to curse like this. You seemed so resigned to the hand that you were dealt: blond hair, fair skin, blue eyes, you said you were the perfect candidate for melanoma. When Dr. Wang told you the treatments weren’t helping and that Renkang Hospital had nothing more to offer, you said you knew there was only a 5% chance of success, and you thanked them for their kindness and care. You just packed up your jar of rose Bengal and went for one more chance: the Philippines.

When the rose Bengal injection to the tumor in your bicep seemed effective you said to me: “Just get your ass here!” It was glib, slap-happy talk. I was a wreck. Weak, afraid, uncertain what to do. “We’ll have that pink blanket of love ready for you,” you said referring to the image I used to prepare for surgery a few weeks earlier. I have no regrets about my time in the Philippines. To the contrary, I feel grateful for the laughter and love, and the opportunity to nourish my body and soul with the simple elements of the earth: sunshine, blue skies, organic greens, coconut water, sea views.

My second evening in Cebu, I sat on a footstool in the kitchen while Eleanor chopped off what remained of my chemo-damaged hair. I couldn’t stand to watch it fall out anymore, besides it had become so dead and brittle that it actually hurt my head. While Eleanor snipped, Paul used his electric razor to buzz off the patchy mess that had become my hair. Somehow sitting in the kitchen while friends helped me become bald made it all okay. “Oh Shira,” Paul said stepping back for a moment, “you have such a pretty face.” With that one compliment, I stopped feeling unfeminine and like the ugly duckling who needed to hide her head for about a million years. Paul showed me I could be a swan after all.

To be honest, Paul’s baldness used to irk me. When we walked through Houjie Town together I worried that people would think of him as a cancer patient, and then wonder about me by default. But as the razor buzzed along my scalp and the dead hair fell to the floor, I felt liberated. Suddenly Paul’s baldness seemed friendly. I wouldn’t be alone.

A few days later we slathered on sunscreen, dressed in long sleeves, scarves, and hats to shield our photosensitive skin from the strong Cebu sun, and drove the hour to San Giminiano, Eleanor’s organic wellness farm and retreat center. The ride seemed to exhaust Paul, and he took a long nap after we arrived. It was Tu’Bshevat, the Jewish birthday of the trees. Eleanor is a devout Christian and loved talking to me about Jewish tradition. In celebration of the day, she asked her farm manager, Danny, to prepare three trees for T, Paul, and me to plant.

After a lunch of fresh farm greens, tomatoes, cheese, cassava wrapped in banana leafs, tumeric tonic, and after a good hard rain, we ventured outdoors. Danny presented Paul with an acerola cherry tree to plant. Danny had dug a hole for the tree, and we told Paul to offer a silent prayer as he planted his tree. An intention. A blessing. He knelt down, put his hands in the squishy mud and patted it around the thin trunk of the young tree. When he finished, he stood up and studied his hands, full of dark, rich, earth.

I don’t know what he prayed for as he planted his cherry tree. I can only assume he prayed for the same thing that I did when I planted my tree or that T might have when she planted her special cinnamon tree. But maybe I’m wrong. Maybe he didn’t ask for something for himself at all. Maybe he was thinking of his daughters. Or his new friends going through their own journeys. That would be just like him.

When he finished praying, I quietly whispered the Hebrew: “ken yehi ratzon.” May it be your will. I find myself saying it again now.

Home in Boston, spring has arrived unusually early with record temperatures in the 80s. It is mid-April and already the daffodils have come and gone. The tulips are up and the azalea bushes have begun to bloom. The trees in our backyard have nearly all leafed their tender young greens. It is a terrible season for allergies. Toby and Leo play outside for hours. David turns the soil of our little garden. The earth has clearly awakened, as it does each spring, always to my deep astonishment and gratitude.

And everywhere I look I am utterly stunned, in the kind of makes your heart swoon because the world is just so gorgeous and how can we ever be big enough to take it in sort of way, by my favorite springtime sight. Cherry blossoms. Oh look how the blooms fill the trees, weigh down the bows with their fragrant exuberance. And when the wind blows it’s like a swirling snow of pink petals that whirl for a moment suspended in the air until at last they fall, spreading, spreading in what I can only describe as a pink blanket.

This time, friend, the love is for you. All you.

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Spinning!

March 10, 2011

For months I’ve peeked into the dark cave of the spinning room at my gym and felt a curious pull to experience its inner mysteries. Pounding music, the acrid smell of sweat, the instructor yelling into a microphone, legions of red-faced and totally buff women generating enough electricity to power our fair town. That was the party I wanted to go to. Instead, I would walk right on past to the magazine rack where I hoped to find a back issue of People magazine to keep me company on some boring piece of cardio equipment.

For the last year, just getting to the gym has been enough. When I returned to my workouts after having Leo, I’d look at myself in the mirror as I did my bicep curls and think: “Not bad for having delivered a baby three weeks ago.” When I resumed workouts after having the cancer surgery, I’d catch a reflection of myself in the mirror while walking on the treadmill and think: “Not bad for having just had surgery.” When chemo started I made it a point to continue exercising for both my physical and mental health. “Not bad for being on chemo,” I’d say to myself while I did my ab routine.

This morning I dropped the kids off early and made it to the gym in time to score the last spinner available. I didn’t think too much about it, or else I would have lost my nerve, slunk out of the room and headed for the comfort of the Oscar issue of People magazine. I just hopped on and began adjusting the seat, handlebars, pedals. Everything seemed to move in some direction. Fortunately, our instructor, Jane, helped me out. She pulled hard on the straps, caging my feet in. There was no escaping now!

Then the music started. A thumping fast rhythm, and I was following the other ladies, going up and down in my seat, standing and pedaling, leaning forward, then back down in the saddle. In the front of the room, Jane waved her arms up and down, conducting us like an orchestra. I couldn’t stop smiling. The craziest, dumbest grin plastered itself on my face. Thank God my private party of one was happening in the last row. This was a blast! This was like dancing and riding and flying all at once. If Jane caught me smiling, then she’d surely hop off the instructor’s bike and come ratchet up my tension. I had heard she’s that kind of teacher.

By the third song, my smile had migrated inside. My mouth was open, sweat dripped down my face, and I was huffing and puffing with my head down, knowing my heart rate was probably through the ceiling but I didn’t care. I had been holding my body so tightly, in protective crash-ready position for months, that I forgot how to let go and feel easy and free and strong and delighted by my body. For over a year, since being pregnant and then with the cancer treatments, I had been careful not to push myself. Always careful, careful, careful (a word I catch myself using too often with my preschooler). But now I was curious to see what this body could really do. I tightened the tension on the spinner and proceeded to climb up the fictitious hill we were endeavoring to scale along with Madonna, every muscle in my legs and butt burned with the effort, and it sucked and was exhilarating at the same time.

I began to tell myself the same old tired phrase: “Not bad for…” But as quickly as the words formed, they disappeared. The story of everything that I had gone through, the sad story I kept spinning around myself without even realizing it, simply ended. In the space that opened up I realized that what came before me doesn’t matter. I understood that if I keep telling myself the same story of cancer and hardship then I will always be defined by cancer, even though I made it through the treatments and as far as I know am disease free. It’s just like the self-help guru Byron Katie asks: “Who would you be without your story?” In this particular moment, who I am is a woman cycling like mad on this bike and feeling, dare I say it, okay. No, not just okay, I was downright energetic and healthy and so deliciously, salty, sweaty, smelly ALIVE.

Okay, so I did need to pay attention to my stomach muscle, which is still healing from the ileostomy reversal surgery I had 6 weeks ago. I wasn’t dumb. But nothing hurt. Nothing was uncomfortable, that is, until Jane came around and asked how I was doing. I gave her a big smile and a thumbs-up. Hmm, perhaps not the best response? She said I looked a little too good, and on the next chorus she cranked my bike’s knob to maximum tension and shouted at me to give it everything I had. “For the next 8 seconds, go as fast as you can, drive it harder,” she ordered. “Go, Shira!” she shouted above the ear-deafening music. “Give it everything you’ve got. Push! Push! Push!” By the time the song ended, my legs were jelly and I was panting for air.

The sweat was so healing. It’s as though my body wasn’t just detoxing pollutants but also ridding my mind of false limitations. As a child, I was always the chubby kid who went to diet camps, got picked last for sports teams, and laughed at during gym class when we had to do the Presidential Fitness Tests. My elementary school gym teacher, Mr. Mingle, would lift the girls up to the hanging bar, step back, and click on the stopwatch. Some of the gymnasts could hang for up to two or three minutes. It seemed like those little bodies just swayed up there forever. But when Mr. Mingle lifted me up to the bar, I immediately dropped to the floor like a sack of rocks. He didn’t even have a second to fool with his watch.

This self-deprecating, sad, fat girl still lives inside of me. Like a ghost, she rattles around my mind and haunts my body. For the last 10 years, I’ve been trying to prove to her that things are different. I attended countless hours of power yoga and suffocatingly hot Bikram yoga. I ran hundreds of miles. I cleansed my colon twice a year and had half a dozen colon hydrotherapy sessions. I attended the gym regularly. I had unmedicated labors with both of my children (well, at least the first 28 hours with Toby). I lost the baby weight and more, and now fit into size 2 jeans.

None of it matters. That little girl still cries because her father teased her by snatching away her ice cream and hiding it under the kitchen table (“for her own good”), even though he was the one who had scooped it out. She still scans the room at parties and public venues to check if she’s the fattest one there. She sucks in her belly and tries to make herself small. She doubts anyone will ever truly love her for herself.

My Shamanic therapist, John, says the key to healing from cancer is practicing self-love. Following the ancient Hawaiian process of ho’oponopono, John says that I have to embrace all the wounded parts of myself, forgive myself, and bring in love (in the words of the ho’oponopono meditation: “I love you, I am sorry, I forgive you”).

Oh, little girl, what would you say if you knew that when you grew up you would have the kindest and gentlest husband who loved you unconditionally? Who would even look at you nude after childbirth and surgeries and with an ileostomy bag swinging from your stomach and tell you he wanted to make love? What would you say if you knew you’d be surrounded by so many loving friends whose support and generosity know no limits? What would you think about your wonderful, round Buddha belly if you knew that, one day, it would grow two beautiful boys? How would you feel about your strength and stamina if you knew your legs would carry you 26.2 miles to the finish line or up and down mountain passes with heavy packs?

The truth, the absolute honest truth is that there was never anything wrong with me. I had a certain shape. And so what that athletics weren’t my bag? I had other interests, like performing in plays and writing poetry. With all the pain, all the dieting and cataloging of food and the desire to be something or someone else, that little girl simply couldn’t realize she was perfect exactly the way she was.

Towards the end of spinning class, Jane cooled us down to “Stairway to Heaven.” I had to laugh—the perfect end to a rocking playlist for us 40-somethings. I had made it through the hour, and to my great delight I hadn’t turned into a puddle of sweat and bones and viscera on the floor as I had feared. My inner coach was throwing a great big happy dance inside of me, but this time the cheer had changed from “not bad.”

“How did you do?” the woman next to me asked as she stretched out her hamstrings.

“Really good,” I said.

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Coming Home

October 6, 2010

I stand before the full-length mirror, taking in my naked reflection one square inch of flesh at a time. My eyes go first to my belly, always there first. What was once smooth now bears the marks of one who has met the surgeon’s knife. Only three years ago I was as unadulterated as the day I was born. Now a blind person can trace the scars that line my abdomen and read the stories that lie beneath.

First there’s the low, transverse “bikini” cut just above my pubic bone where three years ago the doctor cut open a door for my first son, whose slowing heart rate earned him immediate entry to the world. He was pulled from my body bright-lunged, red, blinded by the fluorescent eye of the surgical light and screaming the most beautiful cries in the world. At first, I hated my body for what I perceived as failure. Each time I saw the scar was a reminder of my inability to open naturally and completely, as our morning glories open lazily late summer at the first morning light. As I grew into a mother, I learned how to nurse myself the way I fed and bathed and loved my baby. Every day I massaged healing oil into that deep crevice until it gleamed like a thin strand of pearls.

Almost three years to the date, another surgeon in another O.R. would find that sealed door and open it again. This time there was no baby. This time the doctor pulled out the bloody sack that was cancer. All those years, while I was running miles along the Charles River and lunging in warrior poses, writing poems, while I was meeting and then falling in love with David, while we made love and made babies, while I nursed those babies plump with rich fatty milk, the cancer was slowly growing inside my rectum. Quietly. Deceptively. It hid inside of me as I once hid as a child, tucked into the window well of our house while my sisters hunted to make me “it.”

The low scar where the cancer and 15 inches of my rectum were removed is a deep, brownish-red. The surgeon says it will fade over time. He says it will get smaller. I know. I massage the fragrant oil into the craggy terrain until the keloids are soft. Heal, my fingertips whisper to the places that were cut.

I take stock of the other scars. There’s the little one on the left side of my belly where the camera was inserted, and one in my belly button, and another on the right side. The surgeon drew me a picture of the procedure and made the incisions into a smiley face. I smile at myself in the mirror thinking about that smiley face. But he forgot to add the stoma, the little red tip of intestine that protrudes out of my skin on the right side of my belly button. Follow the map, there it is. David says it looks like a little penis. I think it resembles a nose. One day I will be wheeled into another O.R. where my surgeon will close up the intestine, drop it back into its rightful cavity and pull my skin closed like a coin purse.

I pivot to see myself in profile. This way and that. I glance all around until I meet my eyes in the mirror. I have watched myself change since getting the cancer diagnosis and starting treatment with so many healers. I am learning to let go, let go, let go of all the heavy bags I’ve carried like a pack rat from one heartache and disappointment to the next. I peek into one of the bags and then another bag, and I realize they all contain the same thing: story after story of shame and self-loathing. I’m learning to lay it all down. Some bags aren’t even mine. Whose have I been carrying and why? No, forget why. It doesn’t matter. Just lay it down. Bury it, burn it. Let the letting go commence!

My face softens. I send that woman in the mirror the sweetest smile. “I love you,” I tell her with my gaze. “I’m sorry,” I whisper. “I’m sorry for the hundreds of ways I have been hard on you and have told you that you weren’t good enough, that you were too fat, too slow, too short, your arms too flabby and belly too big.  I’m sorry for directing so much negativity to you, for telling you that you were too much and not enough. I’m sorry for not loving you completely and totally because that’s the only thing you ever deserved.”

And now tears are streaming down her cheeks and onto her neck, the woman in the mirror with her body of secret doors. I hold her tenderly with my gaze, and I feel every one of her sensations. We are the same, of course. Her pain is my pain, and it is the intense wilderness of childbirth, the moment of final release when your body opens wider than you thought possible and the baby slides from one world to the next. It is the sweetest pain of coming home.

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Long, Difficult Journey or Who Gets to Tell This Story Anyway?

September 28, 2010

The nurse ushered us into the little room with the oversized round table and motioned for us to sit down. Leo was crying big angry protests, and his wails filled the room as I awkwardly tried to maneuver his stroller into the small space. Just a moment ago, the women at the registration desk were cooing over the cute baby, calling to the nurses to come and see him. The way they gushed over him it was clear they don’t usually get visits from newborns in the G.I. Unit.

Sara, my dear angel friend, followed us in with the diaper bag. She would be on Leo duty while I was having the colonoscopy. I already knew the polyp they found in my rectum the week before was cancer, but now we needed to go higher and rule out additional tumors in my colon.

The nurse who was handing me sheets of paper to look over was the same one who had assisted my sigmoidoscopy, the one who played loud heavy metal music on the radio while I waited for an hour for the doctor. This was when I was convinced that the rectal bleeding had to be no big deal, of course. This was when I was more concerned about David missing an hour or two of work, to stay with Leo during the procedure, than I was about my health.

“Can you play something else?” I had asked the nurse while we waited for the sigmoidoscopy to start in the cavernous exam room with its monitors and strange equipment.

She glanced up from her internet browsing long enough to give me a sour look. “We only get a few stations down here,” she said. She turned the dial. “Like it?” she asked as country music played.

“Not really,” I said. “Is there any classical?” I was feeling antsy about the appointment running so late, especially with the baby and David in the waiting room, and wanted calming music.

She turned the station, and yet more hideous rock blasted into the room. “How about we just turn it off?” I suggested. She let out a very long and very loud sigh, and switched off the radio.

“Want a magazine?” she asked. “Okay,” I said. She handed me several well-worn issues of Good Housekeeping dated 2008.

It was kind of like waiting to get my hair done, but totally different. I was wearing a thin hospital gown, completely naked underneath save for a heavy towel I used to cover my breasts since I was leaking so much milk. I lay on the exam bed in the middle of the icy cold room, flipping mindlessly through the magazines, and glancing nervously at my watch every few moments. Ah, the joys of waiting for doctors and procedures. When I finished the exam, I would give David my pair of green cotton hospital socks with the no-slip grippy bottoms, which for some reason he adores. And I would cry. “Did it hurt?” he worried. “No,” I said as the tears started to stream down my face. “She found something suspicious and wants me to come back immediately.” David hugged me and rubbed my back in soothing circles.

“You know why you’re here, right?” the same nurse was asking me now as I juggled Leo on my lap. I wanted to nurse him one last time before receiving the colonoscopy anesthesia. She peered intently into my eyes, waiting for my response.

“Yes,” I said. “We’re going to do the colonoscopy to make sure there are no other tumors.” It seemed obvious. She was there when Dr. Barron told me to make the colonoscopy appointment.

Clearly, this was the wrong answer, as she asked again pointedly: “But you know why you’re here?”

Leo was fidgety, latching on and off. I switched breasts, but he just wiggled more. I looked up to meet the nurse’s gaze. “Yes, I understand that the polyp you found is cancerous. I guess you knew that from the sigmoidoscopy.” There, I said the word she had just been dying to hear. Cancer.

“Oh, yes,” she said, happy it seemed to have her expertise called upon. “I could tell it was cancer.” She took a breath, and then dropped her voice to a whisper.  “It’s going to be a long and difficult journey, you know,”  her blue eyes peered into mine. “Do you understand what I’m saying? It’s going to be a long and difficult journey,” she repeated slowly, emphasizing the words long and difficult, “but you’re going to be just fine.”

My cheeks reddened and my ears began to buzz. I handed Leo to Sara because I was totally useless at soothing my newborn son. Up until that moment, I was truly in a good mood, if just a little tired and depleted from the colon prep and nursing all night long. I had worked so hard on having an upbeat and positive attitude since getting the rather devastating news of the diagnosis less than a week earlier. I had sobbed and lived through the sensation of terror freezing my veins. I had stayed up late at night and wondered why, what had I done wrong? I imagined losing my hair and being sick to my stomach. I replayed my parents’ experiences with cancer, all the haunted images of their endless treatments and disappointments and eventual deaths. Then I gazed into Leo’s sweet face and promised him that everything would be all right. I made a conscious decision to embrace this piece of information with as much intention and grace and prayer and love and hope as possible. Most importantly, I would not be like my parents.

I was prepared for the medical procedure ahead and the other tests that were scheduled for the week. But I was totally caught off guard by Ms. Long and Difficult Journey, who sat with her eyes fixed on me, waiting for my reaction. She looked at me with such intense compassion, this woman who less than a week ago was put off by my simple request to create a more calming environment in the exam room.

“I’m holding onto the hope that this is the only tumor and that it’s contained within the rectal wall,” I said. “This is my prayer and intention.” I had been doing my homework, too, and I knew that if I were Stage I, then surgery would be the only treatment necessary. The nurse gave me a doubtful look.

I was so used to being the good girl: the good daughter, the good student, the good patient. “Don’t rock the boat,” my father used to say. He always told my step-mother, Barbara, to stop being so pushy with the doctors. “Just keep quiet, or they won’t give me good care,” he’d say when she tried to intervene on his behalf. Whenever I thought of my father’s timid approach with doctors, I would remember the words of an Audre Lorde poem: “Don’t make waves is good advice from a leaky boat.” But I never really had the gumption to say those words, or to live by them.

I’ve been living the life of a good girl for a very long time. I’m almost 40 years old, for God’s sake, and still I yearn for approval. So instead of telling the nurse that she had no business sentencing me to an arduous future, instead of telling her that she overstepped her boundaries and was not my doctor, that she was in fact acting rather unskillfully and giving me counsel (opinion, actually) before I had done any diagnostic tests, instead of telling her to give me positive energy or none at all, I dutifully answered her questions about my medical history and signed the documents where she scribbled an “x.”

In the weeks and months that followed, I would think of that encounter. As my staging went from Stage II to Stage I to Stage III and I had to incorporate various pieces of information about my treatment path, Sara and I would exchange wry knowing looks and say “long, difficult journey.” Maybe the nurse was speaking the truth—after all, surgery, chemo, radiation, followed by more surgery and years of follow-up testing certainly could qualify as long and difficult. But the point is, who gets to decide how I experience my experience? Who gets to tell my story?

In the face of receiving a diagnosis as wrought with fear as cancer, it would be easy to feel powerless and small. That’s exactly how I would feel if I didn’t step back perpetually to take stock of my life and to view this diagnosis as an opportunity to release, realign, and heal on every level.

During the high holiday season, I visited the reservoir in my hometown to do the Jewish custom of tashlich—casting off “sins” into flowing water as a ritual cleansing before Yom Kippur. I sat on a rock, throwing bits of crackers into the water, praying for wholeness and forgiveness, praying for alignment and connection to God. As I sat there, I thought of my parents. They each struggled so much in their final moments, uncertain and afraid, it seemed, to let go even as their bodies failed them. Suddenly, it dawned on me that I never had a chance to say good-bye to them. Although I was present at each of their bedsides when they took their last breaths, they had lost consciousness before we had a chance for a final conversation. All these months of wrestling with unfinished business with my parents’ ghosts and memories, and it came to me so quietly and clearly: I never said good-bye.

So I did. In the pale sunlight on a cool September morning, I said good-bye first to my mother and then to my father.  In that moment, a breeze stirred up the water and the leaves rustled in the trees all around me. Peace flowed into me like warm honey, and I resumed my walk around the reservoir with a little smile on my lips. I took slow steps, breathing it all in: the thick foliage, the ducks on the water’s edge, the little dog running away from its master and then back again. And as I walked the thought came to me: I will not do cancer the same way as my parents. It’s my time to be here, and I choose to walk a different path. And then another thought: I am not afraid.

This is the story I choose to tell, and these are the words that I will tell it with.

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Days of Awe

September 13, 2010

The ten days that begin with Rosh Hashanah and end on Yom Kippur are often referred to as the Days of Awe. It’s during this time period that the Book of Life is opened and the fate of every person is recorded and sealed for the upcoming year – who will be born, who will die, who will prosper, who will suffer, and so on. I don’t know if this “book” is literal or metaphoric, or some mystical combination of the two, but the idea that you are being judged and your fate determined is humbling, to say the least. This year, as I pray for complete healing from cancer, the holidays are particularly poignant.

The first Yom Kippur after my mother died I went to services at Havurat Shalom, a small funky egalitarian Jewish community that’s located in an old Victorian house near Tufts University. Having just lost my mother, I was already in a time of introspection and mourning when the holidays came along. I thought a lot about God. I thought a lot about my mother’s spirit. Where was she? What happens when we travel on? During the lay-led service, I prayed with newfound devotion, taking in the words of the holiday for perhaps the first time in my life.

What used to be the living room and dining room were packed with people wearing all white, some with their faces entirely concealed in their white prayer shawls. The mood of the day was somber, as is fitting for Yom Kippur, but far from morose. I remember it was warm for October, and the room felt close and stuffy. I should mention now that I am far from being a literate Jew, and only began having my own adult relationship with Judaism in my late 20s by way of a spiritual path that took me through Quakerism, Women’s Spirituality, and Tibetan Buddhism.

Standing there on Yom Kippur in that crowded sea of white, I davened with my whole heart. I felt raw and vulnerable from losing my mother less than two months earlier, and having fasted for nearly 24 hours already, I was empty like water. My heart and spirit cracked wide open and the prayers reverberated through my body like an electric impulse. We were reaching yet another collective crescendo— Adonai Adonai el rachum v’chanun—when I felt myself suddenly transported.

I was no longer in this house in Somerville, Massachusetts, but in a place I can only describe as a clear space outside of time and physical reality. I continued praying to God to be granted forgiveness for all of my shortcomings. I imagined seeing myself with the eye of God, the compassionate vision that takes in all of the goodness and all of the smallness and ignorance and misdeeds. And then in that place of no time and no space, I turned, and saw my mother. She looked so lovely, the way I remembered her before cancer ravaged her beautiful face. She was also wearing white. And she too was praying for her soul before Hashem. We didn’t talk or otherwise interact. We were each engaged in our own intensely intimate moment with God, the living and the departed brought together on Yom Kippur in parallel activities. I realized—it was so obvious how could I have not known this before—that by atoning for our transgressions each year we are, among other things, given the chance to prepare for death.

It was so sweet to be with my mother again. But at some point, the mood shifted. Someone was talking into the microphone, and I could hear the distinctive rustle of people finding their seats. I opened my eyes and returned to the reality of the room with great reluctance. I missed my mother, and the awareness of her loss swept through me all over again. In the ten years since her death, I have met my mother on numerous occasions in the worlds of dreams, meditation, and prayer. But that was the only time I felt like my life and her life had actually intersected. We were doing the same exact thing at the same time.

As I enter my fourth cycle of chemotherapy, death and dying are not far from my thoughts. Even though I feel remarkably well for someone who has endured natural childbirth, a major five-hour surgery, and chemotherapy within the last six months, and don’t feel in the least as though my death is imminent, a cancer diagnosis is reality’s way of slapping you in the face. Wake up!  How have you been living your life? More accurately, how have you been hiding from your life? What has gone so radically out of balance? I’m not saying that people create their diseases—that’s a slippery slope of blame and shame I have no interest in—but I am utterly convinced that if I don’t do the work of deeply searching my life for the ways in which I have lived out of truth and harmony with my spirit that I will not heal. Perhaps cancer is asking me to do the work of Yom Kippur, not just for one day, but as a lifelong query.

Driving to my sister-in-law’s for Rosh Hashanah dinner last week we passed an old cemetery with tall, thin slate headstones scattered throughout the grass. Toby, our three-year-old, asked: “What are those gray things?” I explained that it’s a cemetery, a place where people are buried after they’ve died. He was silent for a while, so I knew he was thinking hard. “I don’t want to die,” he said finally. It was the first time he really understood the concept of death. “I don’t want Leo to die, or Mama to die, or Papa to die,” he said in the same demanding tone of voice he uses after we tell him “no” to something. As his mother, I felt the immediate impulse to assuage his fears: “Don’t worry,” I said, “we’re going to be around for a long time. Besides,” I added, “it’s just the body that dies. Your spirit lives on and on.”

Even as I spoke those words with tenderness and levity, I was aware of another voice inside myself, the one that asks: “Are my children going to grow up without a mother?” How do I come to terms with this question? How do I get up each morning and face this exquisite uncertainty?

In a household with a three-year-old and a six-month-old, there isn’t much room to wallow in fear or despair. I get up because I hear Toby running at breakneck pace to grab a banana out of the fruit bowl. Some mornings, he pads downstairs to the playroom, where I’ve been sleeping on the extra bed, and begins playing with his favorite school busses. When I ask him to lower his voice, he responds by making even louder beeping sounds that ring through my skull like an evil alarm clock. So I tell him he has a choice: he can go upstairs or snuggle in bed with me. The next thing I know, he’s nudging my head over to make room on the pillow and I have my arms wrapped around his warm little body.

In other words, I show up because I am needed. And I show up because I told myself a long time ago that showing up for life, for all of its beauty and all of its tragedy, is the only way to really be here. I am so grateful to this cancer for challenging me to drink it all in, to open my heart more fully and deeply, to be more honest about my feelings and less apologetic for my existence. To realize how deeply I am attached to my loved ones and to show them this love regularly. Not on birthdays, not on anniversaries. Now! Now! Don’t bother with waiting. Run to your life. Meet yourself with open arms. And when you do find yourself, love yourself with all of the tenderness, compassion, and forgiveness of a mother’s love. Of God’s love. This is the prayer I return to over and over again this Yom Kippur.

Sometimes I find myself narrating my life. Maybe it’s a curse of being a writer. A few weeks ago, Toby, my sister Pam, my niece Maddy, David, and I were dancing in the kitchen to our family’s newest favorite CD. “Smile by smile, day by day, love gets stronger in every way, love won’t stop, love goes on like your soul, like your soul, love goes on like your soul…” Toby was throwing purple and blue silks in the air. “This is the way we make the love grow…” David grabbed Maddy’s hands and spun her in circles to the music. I thought to myself: I’m happy. I think I even said it out loud.

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“One pill makes you larger…”

August 10, 2010

Toby helps mama organize the morning supplements

I’ve heard stories of alternative cancer treatments that involve hundreds of supplements a day. I felt sorry for people who, out of desperation I assumed, reached to such extremes.

And then I became such a supplement taker. I didn’t mean to. And I certainly don’t consider myself desperate. But between recommendations from my naturopath and iridologist/ herbalist, I take well over 100 pills and capsules a day. I think I’m too overwhelmed to count the actual tally but I suspect the number is closer to 150. The modest basket in which we used to store our family’s supplements now holds Toby’s toy cars and buses. In its place is a jumbo-size basket to hold my jumbo-size program. And that doesn’t even include the 6 or 7 tinctures and additional teas I consume daily.

Why so much stuff? Well, because Alice told me so. Alice is the iridologist/herbalist whom I met a few weeks ago. She peered into my eyes with a jeweler’s loop and made a few knowing ahas, hmms, and okays. Then she put the loop down, smiled, and told me: “First of all, you are going to be just fine.” I let out the breath I wasn’t aware I had been holding and smiled, and cried, and laughed, then cried some more. I realized that I was waiting for the “but”, which never came. I realized that I have been holding my breath ever since I got the cancer diagnosis on April 1. With every test and every appointment, from oncologists and immunologists to my medical intuitive and shamanic healer, I’ve been waiting for the other shoe to fall–as though cancer wasn’t already shoe size gigantic.

What do I want to hear? What do I want to know? That I will live to see my children grow up and grow old. That I will be healthy and disease-free and live the life that I’ve always yearned to live, the one that flows easily and naturally from my soul’s direction. Nobody can count the number of breaths I have remaining. And if someone could, I wouldn’t want to know. That doesn’t mean that I didn’t feel elated by Alice’s reassuring words. I did. I took her pronouncement deeply into my heart and return to that place of calm optimism quite frequently.

When my mother was sick with leukemia, Bob Marley’s Three Little Birds became her anthem: “Don’t worry about a thing, ’cause every little thing’s gonna be all right.” She listened to Bob Marley every day. She played the CD in the car, at home, and in the hospital when she was there for weeks following her bone marrow transplant. She had never been a reggae fan in her life, but there she was doing chair exercises to Bob Marley in her isolated room on the bone marrow unit. The music made her feel better, but underneath it all she was terrified.

I keep thinking about my mother, Toby Maxine. Now that I’ve done some of my own research, I think about all the alternative and complementary approaches she could have investigated during her illness. I tried once to talk to her about things like acupuncture, macrobiotics, and Chinese mushrooms. I sent her books, CDs, and a relaxation DVD from Amazon. We popped the DVD into the player. Gentle, instrumental music wafted into the family room and the screen played serene images of rivers and other nature scenes. Then a word would flash and linger on the scene, something like “Breathe.”  It reminded me of the videos that some airlines play to help relax passengers before take off.  After a few minutes of this, my mother said: “Turn it off. It’s depressing me.” Thus ended Mom’s exposure to alternative body-mind techniques.

She wanted the drugs. She wanted to do only what the medical doctors advised. She wanted my father’s support, and he wanted the drugs and he bowed down to the medical gods. After the shock of the initial diagnosis (she was admitted to the hospital through the ER, told she had acute leukemia, and started on chemo that night), my mother suffered terrible panic attacks. Home in my little one-bedroom apartment in Harvard Square, I wept for her almost daily. It was a harrowing 10 months from the time of her diagnosis to the time of her death. I wanted my mother to change her lifestyle, to become an entirely different person. I wanted her to drink wheat grass and meditate, and become an enlightened sage who when faced with her own mortality rose above it to higher levels of consciousness.

Then one night, while sitting on the sofa in my apartment, while petting the cat or drinking a cup of tea or staring into space, I felt suddenly pierced by a jolt of white terror.  It took my breath away. I felt like I had entered my mother’s body, or perhaps she had entered mine. “What if I were the one who had cancer?” whispered a small voice inside myself. “What would I do?” I realized right then and there how arrogant and naive I had been to expect anything of my mother. I dropped my agenda and determined that I would love and support her unconditionally, no matter what.

It’s 10 years later and now I am the one with the diagnosis. (Is it possible that I did take my mother’s cancer into myself?) I didn’t mean to write about my mother. I intended to write about my son, Toby, her namesake. I wanted to say that when I got diagnosed, I was so afraid of becoming infirm. I didn’t want my son to think of me as the sick mama. I tried to shield him from it, but then I realized that I can’t and shouldn’t hide my healing from my children. If I want to teach them to be authentic in their lives, I need to model it. Toby has seen all of my surgical scars. He’s tasted some of my teas. He can pick out the bottle of Paba from the Milk Thistle. At dinner, he counts out his peas and says he’s taking his supplements.

One afternoon while driving home after a particularly tantrum-filled day, Toby tells me that he has just seen the grouchy monster (our little game to help him identify and deal with the bad moods that descend like sudden summer storms).

“Oh, where is he?” I ask.

“He’s over there,” Toby says, pointing out the car window at some houses.

“What’s he doing?”

“He’s doing work.”

“What kind of work?”

“Healing work,” my 3-year-old says confidently.

I haven’t yet made it to my zafu to meditate and instead of juicing wheat grass I drink straight chlorophyll and take baths in apple cider vinegar. I had contemplated pumping and drinking my own breast milk (yes, studies have shown that breast milk kills cancer cells), but let’s just say that for various reasons I’ve laid that one aside for the moment. But I love the idea. I love exploring the threads and connections and discovering everything I can about healing. It’s a great mystery and adventure, and this time it is even more personal than it was 10 years ago. Now it’s my body, my life.

Yes, we’re doing healing work, Toby. Healing work.

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