Archive for October, 2011

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Appetites

October 15, 2011

It was Friday morning. Dr. Liu knocked on my door with the report that my white blood cell count was low, but not too low to prevent me from going to Hong Kong for Yom Kippur and a welcome respite from the hospital. I had just started my first rest week between cycles. The nurse unhooked me from the bottle of 5fu chemo that had been my constant companion for the previous 14 days. Although the bottle weighed nearly nothing, my body felt a visceral lightening. I flapped my arms like a bird, eliciting a strange look from the nurse. “Free!” I sang out loud. “I’m free! Free! Free!”

Thus liberated, I made my way across the border and into the international mecca of hyperstimulation, wealth, shopping, food, and high finance that is Hong Kong. The van dropped me at the airport, and while asking the beautiful, English-speaking woman at the information booth directions to the train that would whisk me to downtown Hong Kong and my friend’s son’s apartment, my eye couldn’t help but wander to the shiny shops and restaurants lining the departure hall. I thanked her for her directions and walked the opposite way toward the glimmering promise of European cafes, beautiful shops, and international newsstands. I moved like someone in a daze, the possessed, like one who had wandered days in the desert and wasn’t sure if the oasis were real or the bittersweet fiction of the delusional.

But of course it was real. And it was all laid out behind shiny glass display cases and written on menu boards just for me. I chose an Italian café and pondered my choices, thinking I should make the prudent selection of a salad. Just as I was about to tell the hipster with his thick black glasses my order, my body issued me a very important message, a revelation you might say, that stopped me dead in my tracks from ordering the little plastic bowl of green lettuce, tomato, and demure cucumber. After almost three weeks in southern China I was hungry. No, I was ravenous. I had turned into a 5’2, 104 pound stomach with eyes. Throwing all caution to the wind I ordered a humongous turkey sandwich, with cheese, and davka this on the eve of Yom Kippur. But like I tell you, I was voracious and maybe just a bit out of control, although I refused the pickle and didn’t even bother looking at the desserts though they winked at me with their silky pink and chocolate confections.

Remember, this is the woman who had hardly eaten a piece of fruit in the last year a half. A woman who ate only millet bread and bypassed every loaf of fresh, crusty sourdough at the farmers’ markets. In Hong Kong you might say I became a different woman, a woman who joyously gobbled up a sandwich. A woman who not only smelled a glass of wine – my way of imbibing for the last 18 months – but actually drank one.

Did I feel strange? Did I feel afraid? Well, I would be lying if I told you that I ran into the arms of fresh-baked raisin bread, molten chocolate cake, cups of fresh-brewed coffee, even vegan, sugar-free, gluten-free chocolate cake without a touch of guilt. But if I did feel guilt it certainly couldn’t compare to the giddiness I experienced the entire four days I was in Hong Kong. English-language magazines and bookstores! Taxi drivers I could communicate with aside from flashing my little card that reads: “Please take me back to Renkang Hospital.” When I show this to the Chinese taxi drivers I feel like a school child whose mother forces her to wear a name and address tag on a piece of yarn around her neck.

I confess I was happy for the Western influences that permeate Hong Kong, from the 1 million expats to the shopkeepers with impeccable English, organic hamburger joints, health food supermarkets, and the numerous well-groomed dogs that people carried in their arms or took for walks on leashes. Naturally, a city needs to have a certain level of wealth to afford a luxury like a pet, and Hong Kong with its Ferraris, models, and wealthy businessmen is just the city for miniature dogs peeking out of large, plaid purses.

The wealth also overwhelmed me. I think I felt more culture shock going from the factory town of Houjie with its thousands of migrant workers to Hong Kong than when I first arrived in China. My first days and weeks here were an adjustment primarily to hospital life and the cancer treatment. I was a frog in a pot set over a low flame gradually becoming accustomed to my Chinese surroundings, whereas the radical change to Hong Kong jangled my nerves. But if I couldn’t relate to the Louis Vuitton flagship store or the Rolex shop where one watch probably costs as much as my entire medical bill in China, I was a grateful and willing participant in the city’s culinary offerings.

Of course, the main purpose of my trip was to observe Yom Kippur with a Jewish community. During Rosh Hashana I longed to hear the sounds of the high holiday liturgy, the haunting music that stirs the soul. I sliced up apples and served them with honey, but the nurses wouldn’t touch the strange food. My Australian and American buddies on the hospital floor loved it, though, and dipped their apples with abandon. So when my first cycle break happened to coincide with Yom Kippur, I knew I had to attend services.

As you may know, Yom Kippur is a fast day. It’s a day to purposely empty oneself and disengage from worldly needs to better attune to prayer. It’s a day we reflect on all the ways we’ve been out of alignment or out of connection with God, and pray for forgiveness. More than that, we hunger for our lives, praying to be included in the Book of Life, for a good and healthy life, for at least another year. As I sat in the women’s section of the Hong Kong Chabad Ashkanazi service, all of this was on my mind. Of course. Living and dying are on my mind a lot these days.

But sometime in the early evening, just before the last service in the long day, my thoughts began to drift to steak. Not just any steak, but a tender, choice cut of meat that would cut like butter and melt in one’s mouth. Maybe with a touch of pepper sauce? A spread of roasted garlic?

My soul renewed, it was time to eat. I hurried off to meet Gilly, my generous mensch of a host, who took me out for a meal that would have made my father proud, meaning we ordered a lot of food in a trendy restaurant. Salad. Bread with roasted garlic. A nine-ounce steak for me (which I polished off). Sea bass for Gilly (not as good). Roasted potatoes with rosemary. Molten chocolate cake. And the thing was, after all that food, I wasn’t stuffed. I could have eaten more! Plus I was following doctor’s orders. All five of my Chinese doctors, in fact, have told me to eat meat just about every time they see me.

And that’s what Hong Kong did for me. It ignited my appetite. It woke me up to life. When mom was sick, we all felt peace when she maintained her usual gusto for food, but when her appetite diminished we knew she was in trouble. Food is the foundation for life. It felt decadent and terribly wonderful and exactly right to indulge in so much life.

Suddenly in the disorienting position of tourist, I followed the direction of my appetite, from taking myself out to various cafes and restaurants to wandering the streets of Hong Kong. One afternoon, I followed my curiosity to Lantau Island, a short ferry ride from Hong Kong, to see the famous Tian Tan Buddha, the 112-foot tall seated “Big Buddha” that was commissioned by the monks of Po Lin Monastery. The rain had driven away most of the tourists, so the normally mobbed destination was blessedly quiet. Once I walked past the tourist shops and mini theme-park-like area at the entrance to the plaza, the atmosphere became reverent and peaceful. Looking down upon us with his benevolent gaze, one hand up to remove human suffering, the other resting on his knee to signify human happiness, was Buddha. No matter where you were, Buddha loomed above.

I continued to let my instincts lead, and soon I left the open plaza and walked on a narrow trail headed to the Wisdom Path. A monk in gray robes with a black umbrella and large rucksack on his back hurried ahead of me, most likely toward the nearby Zen Monastery. Aside from him, I didn’t see another soul on the path. I had just left one of the most densely populated cities in the world to find myself virtually alone on a forest path hugging the side of a mountain on an island in the South China Sea. The juxtaposition was breathtaking. I had found solitude in nature. My heart was ready to explode with joy, only I found myself in tears.

“God,” I began, “Why is this happening to me?” “You gave me these two beautiful children, and will you let me live to raise them? To see them graduate from school? Get married?” All of my Hong Kong indulgences had been washed away and I stood raw and open in the heavy mist demanding that God give me a sign to show me how this will all turn out. To show me that I will heal and have my life. On that path with its brilliant green bushes and trees and tea plants, the tears streamed down and mixed with the rain as I walked along, pleading out loud with God.

The trail opened to a clearing and before me stood large planks of wood, rising out of the earth, standing at attention like solitary sentinels. The Wisdom Path, planks of wood etched with the words of the heart sutra, with its quiet presence on the slope of the rugged mountain was in some ways more awe-inspiring than the Big Buddha. I walked the path, marveling at the beauty, feeling the quiet consciousness that infuses this land where monks have been meditating for so many years. I felt the strange sense that I had been here before, perhaps even in my dreams.

And it was here that God answered me. It was in the quiet of the mountain and fog and rain with the words of the heart sutra surrounding me that I realized all of the moments of grace, the helping hands, the innumerable prayers, the donations, gifts, and kindness that our family continues to receive with unprecedented generosity, this is God’s blessing being carried out by so many human hands. I understood that we are the ones doing the work of the divine. We are the ones to ignite and carry forth the spark.

I felt that I could disappear forever into those pristine mountains, perhaps join the monks and enter the veil of silence. But life awaited me back in Hong Kong. More meals and shopping and soon I would ride the bus back over the border to the hospital and begin my next cycle. I don’t know the outcome of any of this. I hardly know what will happen today. I couldn’t have imagined last Yom Kippur that I would spend break fast this year unabashedly devouring a huge piece of meat at an upscale restaurant in Hong Kong, nor do I know what great adventure awaits me next. But I know it will be an adventure, as long as I continue to follow the lead of my appetite, my hunger for life.

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Fierce Love

October 3, 2011

I arrived in China only two weeks ago, but it does feel like a lifetime has passed from kissing David goodbye in Boston to sitting here at my desk tonight after yet another full day of ozone, sonophotodynamic therapy (SPDT), Chinese medicine infusion, blood tests, and an appointment with the Traditional Chinese Medicine doctor who declared my yang is weak and that I need to eat meat. I’ve now heard this from four doctors. So very Chinese. And maybe true?

Landing in southern China without knowing a single word of the language, checking in to the oncology floor of a hospital and immediately beginning a whirlwind of tests, trying to find some morsel of food to eat that would please, nourish, and treat my digestion kindly, and realizing that the two months of treatment I had planned for is actually three months, was a bit like being thrown into the deep end of the pool with no goggles or nose plugs, or towel to dry you off. Luckily, thanks to my dad, I have plenty of experience with the sink-or-swim approach to life. The very first day I had my learner’s permit, my father ordered me behind the wheel and off we drove on two of Philadelphia’s most treacherous highways.

Each day, more and more, little by little, I’m learning to surrender. When I long for home, I remind myself of my purpose. When I crave fresh air and the beauty of the New England autumn, I tap into my motivation. And when I ache to hold my children, to feel the soft skin of their cheeks, or for the luxury of wanting to talk to David and simply walking into the next room to find him there, I tell myself that I have come here for cancer treatment. And not just any treatment. I’ve flown halfway around the world for Dr. Wang and his innovations.

My first week at Renkang Hospital was sort of like orientation week. The college analogy strangely fit. The first few days, as Sara and I decorated my hospital room with photos and sarongs and Indian tapestries, and met the other patients on the hall, we kept commenting on how it felt like our freshman year at Brandeis all over again. Unpacking my massive bags, I felt an odd giddiness, wanting to share with Terri and Tricia down the hall all the loot I had brought from home: coveted jars of almond butter, packages of organic nori, bags of quinoa. But that’s where the analogy begins and ends. Soon I became a pincushion for the nurses: blood tests and ivs for Cat Scans and ultrasounds. They tested my heart, they checked my urine and stool. I met doctors. I met nurses. I couldn’t remember anyone’s name, and all the nurses looked so much alike in their white pants suits, caps, hair pulled back into buns affixed with blue bows, and sterile masks hiding their faces.

After two weeks I know a bit more. I quickly came to recognize FeFe, a small nurse with a pretty face and a tiger-like attitude. I know YaTing, with her gentle eyes and quick laugh. Of course I know Sophie, who speaks English and is having some trouble with her boyfriend at the moment. They are all so young, and so sweet. Twice a week they take English class with one of the translators. The nurses and doctors were in uproarious laughter over a game of Simon Says, as in “Simon Says touch your head, touch your mouth, your nose…”. And now all the nurses are selecting English names to help us dimwitted Westerners since they think their Chinese names are too difficult for our English tongues. To my entirely ignorant eye and ear, Chinese is impossibly complex and impenetrable. I don’t know how a population of 1 billion manages to speak, read, and write it so fluently. So now the 15th floor nurses’ station is populated with Eve, Nikki, Linda, Joyce, and Ava.

This afternoon Ping, our SPTD nurse, stopped by my room to help me buy a digital camera through a Chinese web site. She had changed out of her white hospital uniform and was wearing a long cotton green skirt and a white t-shirt. She looked so pretty, and so impossibly young. In her white nurse’s uniform she is transformed into an efficient and capable nurse who’s job it is to find a vein for the large ozone needle, and then to help us in the ultrasound bath and light bed. But this young woman in my room could have been a friend from college – no, high school she looks so young. As I was hooked up to my Chinese medicine drip and resting in bed, she parked herself next to me on the double bed, flipped open her laptop and furiously began researching cameras for me. She was doing the Chinese version of instant-messaging with a friend while talking to her boyfriend on her cell.

As I lay there with the curtains drawn, my eyes closed, so tired from the day’s treatments, I felt Ping’s vibrancy and youthful energy brighten the room, making the molecules of the air more buoyant. For a moment, we were two girlfriends just hanging out together, engaged in our separate universes but having a good time just because we were together. And then I remembered the drip. I remembered that I’m nearly old enough to be Ping’s mother. I remembered that I’m thousands of miles away from home. I remembered cancer.

It sneaks in like that sometimes. Most of the time, even while attached 24/7 to a bottle of chemotherapy, I feel surprisingly normal. In the morning I stretch and do sit-ups. Sometimes I do pranayama breath practice and then meditate. This morning, with my chemo bottle and iPod snuggled up together in my fanny pack, I did Balinese shaking for 30 minutes on the balcony. I ate a great breakfast of muesli, yogurt, and orange slices. The first week I arrived here I realized I had to let go of my strict diet or else I would starve and be miserable. Oranges! Grapefruit! Bananas! What joy after nearly a year and a half of not having fruit. Then I put on music and danced while the cleaning woman called “Auntie” stripped my bed and remade it with a fresh set of pink gingham sheets. Did I mention that my room looks nothing like a typical hospital room?

While this is a cancer floor and we are all here for the same reason, the mood on the hall is so positive. The doctors and nurses are all very upbeat, but not in a sugary annoying placating kind of way. The truth is it’s rather refreshing that I can’t understand most of the nurses. I don’t get those painful looks of sympathy when they find out my age or that I have young children. These nurses just point at the photos of Toby and Leo and laugh at the fact that I have two sons, though one looks like a daughter because he has long hair. It’s become a game: a nurse will bring in a friend to my room and point out the pictures of the kids and say: two sons, not one son and one daughter. Hee hee hee, she laughs behind her mask or behind her hand.

Steve who is here for a recurrence of throat and neck cancer saw a 30% reduction in his tumor after his first round of SPDT. Gaye next door arrived with a terrible cough from a large tumor in her lung. After her first round, the cough all but disappeared. Yesterday she went for a swim, and today she went out browsing knockoffs of designer handbags. Her husband Kevin is a mean cook, and they’ve taken pity on the American “girl” and fed me delicious dinners on a number of occasions. Tricia who is also here with a recurrence has had a 50% reduction of her breast tumor during her first cycle.

Many of us here have stage iv cancer, and have been given prognoses or treatment protocols from our doctors at home that didn’t feel right to us. Some were more graphic about their displeasure with their medical care: “I just told him to fuck off,” quipped Gaye in her no-nonsense Australian accent after one doctor told her she had 6 months to live. That was well over a year ago.

We international patients of floor 15 are primarily from the U.S. and Australia. Despite our cultural differences, we share at least one trait in common: a strong and independent will. And yet we listen to Dr. Wang, trusting this wise and gentle doctor who has had such good results with so many patients.

But even Dr. Wang is concerned about keeping cancer from recurring. He feels quite confident that he knows how to eliminate it in most cases, but permanent remission is more elusive. Honestly, it was a sobering blow to arrive and realize that patients who had been cancer free were back for more treatment. And yet that’s just the nature of the beast. And it is a beast. I get that now. When I was first diagnosed I wanted to treat the cancer inside myself with peace and gentleness since it was a part of me after all. But now I understand that cancer doesn’t give a shit about me. Cancer’s only motivation is a selfish, ravenous desire to feed and multiply at any cost. And isn’t that the irony? Cancer’s insatiable appetite will be its ultimate demise: by killing its host, cancer will kill itself.

I can’t help but reflect on the massive construction and heartbreaking natural devastation of this land, and it’s happening from 6 am until midnight right outside my window. I’m told that there’s no blue sky here, not just in industrial wasteland Houjie Town, but in all of China. Out of control growth. Of course, this is what the environmentalists have been warning us about for years. I’m sorry for the digression, but here in Houjie, Dongguan, China, I find myself living in the belly of the beast, in a place where I refuse to jog outdoors for fear of breathing in thick gray pollution. Yet this is the place that holds the promise of putting my cancer in remission.

So what’s the plan? Dr. Wang says first we have to get rid of the cancer, or reduce the tumor load significantly, and then we can introduce immunotherapy to strengthen the immune system specifically by culturing superhero-like NK cells (DC-CIK). It’s a protocol being studied worldwide, and recently available to patients in China. In other words, we slay the beast and then we create a warrior army to patrol for and disarm unwanted invaders.

Yes, 18 months into cancer, my language has changed. My attitude has changed. I’m definitely in combat mode now. But it’s more than that. Laser-like purpose. Don’t f*** with me or my children protective lioness energy. You might call it our essential will to survive. I call it fierce love.

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