Archive for the ‘China Sonophotodynamic Therapy’ Category


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.


Homesick, Heartsick, Sick of Cancer…But I Couldn’t Be Better!

November 30, 2011

I’ve been in China for two and a half months, which means I haven’t held, hugged, carried, bathed, massaged, tucked in, snuggled, rolled around with, smelled, or kissed my children goodnight for a very long time. Of course I miss David too, but missing a husband is different: I yearn for David while I ache for my children. Especially at night I miss the puzzle piece closeness of David’s body, his arms wrapped around me, knees fitting into the bend of mine. But lately when I think of the kids, look at their photos on my wall, talk to them on Skype, I feel as though pieces of my body have been removed.

This afternoon, sitting in my room on the 16th floor of Renkang Hospital while receiving hours of i.v. infusions from ozone to chemo, I know I should be grateful for my good treatment results and find the strength and spirit to carry on with a positive attitude, and I promise I will, it’s just that right now I feel like a hollowed-out tree. In case you couldn’t tell, I’m feeling a little sorry for myself and angry all over again at this disease.

I didn’t want to write any of this for fear of what you might think of me. But somewhere along the way I decided to speak honestly about my life and if I didn’t show you the lows then you wouldn’t believe my highs, and there have been many extraordinary moments since I have been here in China.

What set off this current mood was listening to Dr. Wang think aloud in a combination of English and Chinese about my treatment plan. He outlined a few scenarios based on the results of the PET/CT I am scheduled to take at the end of my fourth cycle of SPDT, roughly three weeks from now. Regardless of the results – residual disease or a complete response – Dr. Wang is recommending more treatment to either continue attacking the cancer or to keep it from returning, or both. There will be information to research, decisions to make, plans, finances, family, and so much else to consider. It seems that this path perpetually asks me to figure things out. These crossroad moments are exhausting. They stimulate my anxieties. I reach into the void looking for predictions or guarantees, and I never find them no matter how many times I ask or how many different ways I pose the question.

Today I asked Dr. Wang if he thought his proposals could bring a cure. He has seen patients with terrible disease, livers so full of tumors there was hardly any healthy tissue, cancer wrapped around spines and permeating lungs–he has seen these patients dissolve cancer away. And he’s also received news of the cancer’s return. “Generally speaking, it’s like this…” he began this morning surrounded by the usual entourage of five oncologists. Informed by 40 plus years of oncology experience mixed with his hallmark optimism, he said he hoped for a long survival for me. He didn’t say cure. He made no promises. He answered me honestly and compassionately, which is all he’s ever done.

When Dr. Wang and the team moved on to another patient’s room, I took my question to Google, typing in “metastatic colorectal cancer survivors,” which turned up the standard issue hits of large cancer treatment centers, scientific studies and reports, and support groups sponsored by the big guns like the American Cancer Society. I checked out the latter, hoping to find stories of people who survived disease free past the crucial 5-year mark or, even better, made it to the prized 10 years when cancer is really considered cured. Most long-term survivors had been on and off chemo for years and gone through multiple procedures and surgeries. Where were the cured people who were simply drinking organic vegetable juices and taking their daily vitamin D?

My laptop is propped up on my lap and I am writing this post and simultaneously researching online while Avastin drips slowly into my veins. I was so afraid of chemo, and here I am receiving it with remarkably few side effects thanks to this low-dose treatment. Lately I’ve wondered if maybe my cancer would have regressed if I had stayed at home in Boston and simply followed through with my oncologist’s recommendation for indefinite chemo. How do I know if the little green chlorophyll drops and ultrasound bath and light bed are responsible for my results thus far? Is the time away from home and the enormous financial expense of this treatment worth it? Today really is a day of questions and doubts.

The i.v. bag finishes and the nurse comes in to hook up the Oxaliplatin, my least favorite since it makes me mildly nauseous and beats up my white blood cells. Before she connects the i.v. to the electric pump, which must be plugged into the wall since they don’t have battery operated ones here or infusion poles with wheels, I grab the bag, hold it high in the air and trot off to the bathroom for a pee break. This is my fourth bag of the day after all! The bathroom has lots of nifty hooks for just this purpose, and I attach my bag to the one closest to the toilet, only it slips and my chemo lands in the toilet. “Oh no!” I cry, quickly rescuing the Oxaliplatin from the bowl.

My nurse rushes to the bathroom to see if I’m okay. Her English is just a hair better than my Chinese. I try to explain that the chemo fell into the toilet, demonstrating how it slipped and then went “plop,” but that really everything is okay because of the three-second rule. My nurse looks horrified. I know this might defy your sense of China, but the Chinese are actually quite paranoid about germs and bacteria and take meticulous care with personal hygiene. In a flash of insight, it dawned on me one day that the reason they use Chinese toilets (low-flushing holes in the ground) isn’t because they’ve been sadly deprived of our Western commodes but because they prefer them; they think they are more sanitary.

My poor nurse leaves me alone to use the bathroom, without further mishap, and then returns with several other nurses. They point at the wet bag of chemo (I had rinsed it off) I’ve hung on the pole and talk in rapid Chinese. I ask the student nurse in the pink uniform what’s going on and she points at the i.v. bag, stumbling to find the right English words to tell me politely that they’re worried toilet water is now infusing into my veins. “Oh, I see,” my eyes grow wide as I notice the bottommost part of the bag that connects to the i.v. tubing, the part that could have potentially been open. The strange thing is this actually doesn’t bother me. It strikes me as very funny. Hysterical, actually. I mean, who drops their chemo into the toilet? I’m bent over laughing, and trying to communicate that it’s okay, that I’ll take my chances. Four pairs of brown eyes stare at me in consternation above their surgical masks. “Oh well,” I shrug, “no need to disconnect me,” and I hop back into bed ready to be plugged back in.

While I will never know for sure, I do believe the SPDT is working. After three cycles, my CEA tumor marker has dropped almost back to the normal range (5.99 at last reading), the tumor in my liver has decreased by 60% with very little blood supply remaining, and the nodules in my lungs are all smaller and some have disappeared. Of course the chemo is helping, but I am on such a small percentage of the standard dose that I doubt we can give it all the credit.

From the beginning, Dr. Wang said he wanted to treat me very gently. “Gently but powerfully!” I said with my fist raised in the air. I wanted to show him that I was no shrinking violet; I was here to do some major cancer ass kicking. “Oh yes!” he laughed, his eyes disappearing into the wrinkles in his cheeks, “gentle but very effective.” But even on my low-dose chemo, my white blood cells continue to drop – most likely from the Oxaliplatin – and they’ve had to reduce me to lower doses because above all they want to protect my immune system.

My blood function was so concerning to the doctors that one day during rounds Dr. Wang told me again how they have to treat me carefully. Despite attempts to appear as a strong warrior goddess, I guess I am rather delicate after all. Dr. Wang went over how they would have to monitor me closely, and again told me to eat meat to boost my white blood cells. Then he paused, considering what he wanted to say, searching for the right words in English, finally telling me: “I think conventional chemotherapy would kill you.” He gave a little laugh to temper his statement, as if to say what fools would ever give this flower such toxic doses of medicine?

Isn’t this what I knew all along? What my body and soul had screamed to me when I was trying to decide on standard treatment? My intuition led me elsewhere, and I followed it one step after the next until I arrived here at this moment 10 weeks later in Southern Medical University Renkang Hospital, Houjie Town, Dongguan, China.

I think my biggest challenge is learning how to live in the present. When my attention and focus are aligned in the present moment then all is well. Generally speaking, to borrow Dr. Wang’s phrase, I am actually very happy and optimistic and feel deeply connected to God and the amazing forces of universal love. But when I enter the dark forest of unknowns, the what-ifs and what-could-have-beens, the worm of doubt enters my psyche and eats away at me so slowly and imperceptibly that I think it’s real. (Kind of like believing one’s crazy emotions during extreme PMS.) I begin to look for an exit strategy, plot out the next plan, and ultimately feel so overwhelmed by the sense of having to take care of things all on my own.

In the darkest of dark moments, I imagine an end to this suffering. I imagine just surrendering to the hospice bed and the relief in letting go, in giving up the constant fight and the struggle to continuously figure things out. I told you I would be honest with you. Please don’t tell me to continue the fight; don’t send me emails with pithy statements to cheer me up, because I’ve come to a realization. And here it is. It has to do with healing and with God and love. I know these themes have dominated my last few postings, but the one thing I have here in China is time, a lot of time to spend contemplating my deepest beliefs and truths.

During this recent low, another choice presented itself to me, a different way to surrender. Instead of the hospice scenario, I imagined falling backwards into a different bed, a bed of light is the only way I can describe it. The total and complete love of God. What if I could surrender my little idea of control to God? Is this what all of those 12-step bumper stickers are referring to? Is this what’s meant every time a religious Jew begins a statement with “Baruch Hashem”? If it’s God’s will….

And this is what I’ve realized about healing, too: I don’t have to do anything to heal. Imagine that! In my understanding, healing isn’t in the least about doing. Rather, it’s about receiving. For someone who has focused her entire life on doing, and doing is what leads to success and acknowledgment, this is a radical shift. It’s completely changed my experience of treatment too. When I go into the SPDT ultrasound bath now I relax completely to the zings of ultrasound energy, imagining my cells opening to their healing pulses, and it’s so much more peaceful. I pretend I am a lotus flower, opening in the water. I take in the healing. I breathe. I receive.

Sometimes I visualize myself in the center of a healing circle in the autumn yellow woods. There a group that calls itself  “The Council of Twelve” welcomes me, led by a wise female elder I simply call Grandmother. We meet to do healing work. Sometimes they teach me lessons. The last time I was in the ultrasound bath, I went into visualization and met them in our woods.

I told Grandmother that I had so much uncertainty lately. She asked me to visualize it, to give it a color and to tell her where in my body it resided. I saw dark blue-gray staticy light all around my head, with threads traveling throughout my body. She asked what I needed to balance the fear. At first I wasn’t sure, then the vision of a yellow powder emerged. I poured this powder over my head and it transformed the blue light into green light. The green energy traveled from the top of my head down and out my body through the bottoms of my feet and sprouted into brilliant green grass. I immediately felt calm. The grass was so lush and inviting, I lay down on this fragrant bed and like a cat sprawling in the sun I basked in the warmth of the sweetest healing light. I was completely held and so safe.

I knew I needed to sing this powerful energy flowing through me. Remember, I was still floating in the ultrasound tub. “Hong?” I called for my SPDT nurse. She appeared immediately at my side, concerned: “Yes, Shira, are you okay?”

“Everything is fine,” I told her, “but I need to sing now.” Hong looked puzzled, motioned for my bottle of water.

“I don’t need to drink,” I said, “I’m going to sing. La, la, la…” I wanted to forewarn her of the strange sounds that usually come out of me when called to spirit sing.

With earplugs in my ears, oxygen tube in my nose, goggles over my eyes, and 158 ultrasound jets pulsing against my body, I sang. But I was in two places at once. I was also singing on a bed of green grass. I was singing to the blue sky above my head and the warmth of God’s radiance shining on my face. I sang tones and oms in the small white hospital room with a masked nurse who probably thought Americans were a touch crazy. I sang my gratitude for this unpredictable, sometimes challenging, and often exquisitely beautiful life.

In Newton, Massachusetts, there’s a cashier at Whole Foods. I’ve forgotten her name. Maybe you know her? Every time you go through her line she asks how you are. When you return the question, she always has the same answer: “Thank God, couldn’t be better.” I think about this cashier more than she could ever know. I think about her attitude and how much better life would be if I could be thankful each and every moment.

Lately I’ve gotten emails from people wondering about me because I’ve been rather quiet. It took me many words and a rambling story to get here. But you want to know how I am? I couldn’t be better. Thank God.


Notes From a Gray Couch: Hong Kong Part 2

November 7, 2011

I awoke in my friend Gilly’s guest bed in Hong Kong, where I’d come for my second rest break between SPDT cycles, to the all-too familiar feeling of upheaval in my stomach. Nausea seems to be my plague in China, but I wasn’t on chemo and I never expected immaculately clean Hong Kong restaurants to get me sick. Instead of drifting peacefully on a calm sea of 400-thread-count white sheets I felt like I was rolling in the swells on dad’s fishing boat.

Memories of rich meals, grilled lamb, mini hamburgers, roasted potatoes smothered in cheddar cheese, that enormous T-bone steak we shared the night before played across my mind. I pulled my sleep mask back into place and burrowed into the covers, exhausted, nauseous, and afraid that I had jeopardized my treatment – and for what? – meat of all things! I cursed my sensitive digestion, sure I had contracted another bout of e-coli (or some such bacteria) which had left me sick as a dog and unable to receive all of my chemo just a few weeks earlier.

Restless, I tossed the covers off and stumbled to the bathroom where I splashed water on my pale, clammy face. I had promised David we would Skype, so I booted up the laptop and called my love. Hearing his voice brought up the tears I had tried to push away. David did all the right things. He listened to me complain. He said “oh, honey” just when I needed to hear it. He listened to my fears that I would be sick for another week and that I screwed up the most important thing I have to do, the only real thing I have to do: life-saving cancer treatment. He told me he was there for me. And then he proved it by accompanying me to the bathroom. I set the laptop on the floor and was immediately sick in the toilet while in the background David made soothing sounds. Oh ours has become a modern romance.

I brushed my teeth and wandered out to the living room where I made camp on Gilly’s enormous, custom-built gray sectional. Gilly had already left for work, but his helper Andrea was there, bustling about the apartment making the bed, cleaning the bathroom, washing the breakfast dishes. “Good morning! Boker tov!” she said brightly in her musical Filipino accent (Andrea worked in Israel for eight years before coming to Hong Kong and makes a mean matzo ball soup). “Would you like I make you fresh grapefruit juice?” I groaned at the thought of acid hitting my already roiling insides, and told her I wasn’t well. “Everything will be okay,” she said nodding her head for emphasis, “don’t worry.” Andrea says this to me a lot, usually with a slightly worried look on her face.

Andrea tucked me in with a pillow and blanket, made me a cup of tea, then went to the store to buy bread and raspberry jam. For the first time since starting treatment, someone was there to take care of me. Toast and tea may not seem like a big deal, but I was so grateful for this nurturing. I looked out the window at the blue sky and could feel the promise of my day’s plans to explore Hong Kong’s beaches evaporate. I didn’t have the energy to argue. I gave in to my body. I gave in to the exhaustion. And so, listening to the comforting sound of Andrea’s flip flops thwacking against the hardwood floor as she hurried from one end of the apartment to the other, I fell asleep.

For years, and I mean many, many years, I have ignored my body when it told me it was tired. My father always accused me of burning my candle at both ends. Busyness equaled productivity, which stood for success. When I felt tired, which was just about most of the time, I pushed ahead. I thought if I worked out more, then I wouldn’t feel so tired. If I stayed busy and kept moving, then I’d have more energy. If I drank coffee, ate something crunchy — if, if if…. If meant ignoring my body’s clear and consistent message: “Girlfriend, take a nap. Go to bed earlier. Rest!” Feeling tired scared me, but slowing down to rest frightened me even more.

“What’s wrong with me?” I’d wonder. And something was wrong with me, was growing more and more out of balance, but I was too damned obstinate to listen. Even after I gave birth to Leo, had surgery, and then took chemo for six months, I prided myself on operating at just about 100 percent by keeping up with the kids, making dinner every night, shopping, doing laundry, staying on top of household maintenance, even freelancing a little. When my friend Ilana said that I was more productive while on chemo than she was in her normal life, I felt a little ripple of pride.

Hadn’t my cancer diagnosis taught me anything? Apparently not, as I was still aiming for perfectionism: I would “do” cancer efficiently, brilliantly, creatively, inspirationally. I would get straight A’s and make it look easy. And then the cancer spread.

If my original cancer diagnosis wasn’t enough of a wake-up call, then reading “progressive metastatic disease” on the radiology report had what it took to shake me permanently out of my sleep. And you see that’s the irony. I was so busy staying busy and fantasizing some other version of a perfectly fulfilled life that I didn’t realize I was actually sleeping my life away. That one string of words at the end of a CT report, words normally followed by a calculation of months, brought me stark naked, crying, and vulnerable as a newborn into the present.

I woke up on that oasis of a gray couch a few hours later. My stomach pains had disappeared, and I was hungry for the thick slice of toast I had abandoned on the plate before dozing off. Could a simple nap really have healed me? By doing nothing, I felt better. Most importantly, and I sighed with relief, treatment would resume as scheduled.

The next morning Hong Kong greeted me with yet another gift of blue sky. In a part of the world plagued with smog sometimes so thick you can look directly at the sun midday, clear skies are rare and precious. To celebrate my last day in the city, I took a tram ride up to the Peak where I planned to have a very simple lunch at an outdoor café and then walk in the sunshine.

While walking the loop around Victoria Peak, overlooking the skyscraper city of Hong Kong far below with its harbor of miniature boats bobbing across the sea like children’s bath toys, I found myself, as I often do these days, talking to God.

I realize, God, that I have been like a child. For almost 40 years I took my life for granted, believing that I were immortal and that nothing bad could happen to me. It was a naïve, privileged life. It’s not that I didn’t know death. I learned all about death at my parents’ sick beds, and I tell you I wasn’t afraid. In fact, I felt a certain instinct for it. You might say I have a calling for how to be with the dying, how to ease their fears, lessen their attachment to the living, midwife them across the threshold to the other side. I just never expected to face the truth of my own immortality at quite so early an age.

And I want to thank you, thank you, for shaking me out of my waking sleep. You brought me to the precipice and the fingers of fear stroked my spine until I felt the white hot dread of everything that I would lose, everything that I love. It is my children I love. My husband. My sisters, all my family members. My friends. It’s dancing and playing chase around the backyard. It’s the blue-green earth and the ocean full of whale song. It’s a novel I can’t put down and lines of poetry so perfect and true they bring me to tears. It’s praying in community in any and every language. It’s blueberries in July and butternut squash in October. It’s the New England forest and all of the mountains and harbors and romantic cafes I’ve yet to visit.

It is life that I love, God. Finally, my whole being knows this! I spent so may years in limbo, just waiting and waiting for my life to begin, and now that I see its trajectory like the arc of a rainbow that begins and ends in earth, I want to rise up with every cell in my body to touch, taste, feel, see, listen, experience it all.

Please, God, I know that I am just one small spark in a city of millions on a planet of billions of souls in a universe beyond enumeration, but it is my soul and so to me that means everything, and I ask you God to remove this cancer completely and permanently from my body. Fill me so completely with your light that the darkness is overwhelmed and can do nothing but weep for the sight of so much love. I understand I’m asking for nothing short of a miracle, but that’s only because I believe in them, as I am finally coming to believe in you.

I stop walking and stand on a platform overlooking the view. If you were to see me there you would probably think I was just another tourist, with my sunglasses, bottled water, and shoulder bag full of trinket souvenirs slung diagonally across my back. If you looked more closely you would notice the flush on my cheeks, the private smile on my lips, my head tilted as though I were listening to the wind. You would see me take a deep breath, exhale, laugh out loud. You would see me reach my arms high into the brilliant blue.



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.


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.


Saying Yes

September 28, 2011

It’s evening in Dongguan. I sit here at my desk next to the open balcony door, feeling the heat of the day finally mellow into a bearable warmth. Construction sounds waft up to my room on the 15th floor of Southern University Medical Hospital Renkang, some kind of drilling, I think, for the new bullet train they plan to build right outside the hospital. This is how it is in China: construction. And lots of it.

The very sweet nurses in their white starched caps and little bows have just come in to check on me, cleaning my new PICC line (a long-term iv port I became the proud owner of yesterday) and hooking me up to my two hour drip of “Chinese medicine.” I’m not really sure what the yellowish liquid is flowing into my vein at the moment, but it supposedly helps protect my liver and stomach from the low-dose chemo I’ve been on for the past week.

Life in a hospital in southern China has had its interesting moments, to say the least. Mostly, I’ve just been going with the flow, stopping to inquire when a nurse aims her hypodermic needle at me (“what’s that?”) and asking the doctors questions, such as about the possibility of using traditional Chinese medicine. The team of doctors chuckled at that one. “What’s so funny?” I asked the translator. She said: “They’re laughing because we’re in China. Of course you can have Chinese medicine.”

Sara left two days ago and I was tempted to pack myself into her rolling duffle bag and fly home with her. New England. Fall. Crisp, sweet, fresh air. Leaves turning every color of the sunset. Apples. Butternut squash. Acorns crunching under foot. Walks in the woods. My children. David. My children. When I imagined two months on my own (and now I understand it may very well be more like three months), I saw myself in meditation and deep reflection. I imagined a retreat, filled with yoga and writing and good books, and time. Lots and lots of time to just go deeply into my healing without having to juggle the thousands of needs of two small children and a household. I figured I would let out an enormous sigh of relief to let go of all my obligations and just take care of myself. What I didn’t anticipate, what I didn’t factor into this 8,000 mile journey, was just how much I would miss my boys.

I decorated my room with beautiful, colorful Indian prints, sarongs, the magnificent purple healing quilt my Rosh Hodesh sisters and I created together before I left, and pictures of the kids and David from our recent trip to Wellfleet. The nurses and doctors have all laughed and pointed at the photos. Toby and Leo have earned many thumbs-ups, and nobody will believe me when I say Leo with his gorgeous face and long locks is a boy. The cleaning women are especially fond of the photos and I can tell by the crinkles on the sides of their eyes that they are smiling behind their paper masks.

I stare at those faces daily. I long for my family deeply. And while people have said to me all along that I have so much to live for, meaning the children, I always nodded and dismissed the comments as trite. Isn’t that always the case: the mother should fight for her life for the sake of her children? Yes! The answer of course is yes! When I feel far away and homesick, I look at my boys and I think that this is for them. I have never felt my motivation to live more strongly or deeply as I have since arriving in this very far away land.

It’s that “yes” that brought me here in the first place. From the moment I said yes to my Mass General Hospital oncologist’s proposal for chemo for the rest of my life, my world has turned inside out and upside down (no wonder I now find myself exactly on the other side of the world). After calling to set up appointments for a port, a scan, scheduling the start day for biweekly chemo infusions, I wept incessantly. For three days I tried to pull myself up from the abyss of despair but I just couldn’t find my way out. Throughout the last year and a half, whenever I had received difficult news I had always found a way to integrate the information and come to peace with a decision forward. This time was radically different.

I had to say “yes” to chemo for the rest of my life to realize that in fact it was a “no.” My soul told me that if I went that direction it would be the beginning of the end, and whether or not that’s objectively true doesn’t matter (can we ever know anyway?). I understand enough about cancer, cancer recovery, spontaneous remissions, placebo and nocebo effects to know that our beliefs heavily influence, if not determine, our outcome.

I backed myself out of the corner I had felt trapped in, and began to ask the simple question: Are there any other options? According to my oncologist, there weren’t. If there were, he maintained, he would have told me about them. But that answer just didn’t feel good enough. And so I began to look, first through the Moss Report and then on the web. What was happening in other locations? Other countries? I considered some of the major alternative treatments, like the Gerson method of juicing, strict diet, and daily detox through enemas, but that didn’t feel quite right either.

Following the clues, the studies, the anecdotes, online message board conversations, and the mind-numbing amount of information on the web, I eventually learned about sono-photodynamic therapy (SPDT). I first heard about SPDT when I called a patient liaison to inquire about cancer treatment in Germany and Mexico, which is another destination for SPDT. She told me the basics of SPDT: chlorophyll, light, sound waves, oxygen. She described it as internal photosynthesis, since the chlorophyll sensitizers interact with the light waves and sound waves to produce oxygen (singlet oxygen). My body lapped at each of these words as though I had been walking through the desert for miles and someone had just handed me a glass of cool water.

“Really?” I said incredulously. This treatment spoke to everything I believe in about healing. I hung up the phone stunned and my fingers immediately flew to the keyboard, typing in SPDT to my browser’s search engine. The more I studied and read patients’ blogs, the more I knew that I had found my treatment. From deep inside my body came a slight humming, it was the singing of yes. A true yes. A hallelujah yes. And it was a quiet yes too. Full of determination and clear seeing and a future, a long, long healthy future.

And then I came to the realization that my singing yes wasn’t going to take me on a simple trip to Mexico for SPDT but all the way to China to work with the founder of this protocol, Dr. Wang.

“China?” I said to myself.

“China?” I said later to David.

“Why not?” he replied. “The world’s not that big of a place anymore.”

“But how…” and before I could blather on about the time away or the exorbitant expense, my husband, my beautiful big-hearted husband who has stretched and grown and held steady through all of these months and whom I’ve totally and completely fallen in love with all over again but more deeply and widely and knowingly than when we first met, that man said to me: “We’ll make it work.” And when the tears welled up in my eyes, he put his arm around me: “I support you babe,” and he hasn’t moved his arm away since. We’re 8,000 miles apart and that arm is still around me.

I think I needed to tell you about how I got here before I can tell you about being here. And being here is a big deal. On every level. Most importantly, I feel so much care and encouragement from Dr. Wang and his team. These dear, smart, beloved people want to do everything to see their patients get well. Dr. Wang has never made me any promises, but with his broad smile and kind eyes he has told me repeatedly that he will treat me gently yet effectively.

One afternoon, when I wasn’t feeling well, Sara went to the hospital canteen to get me some simple noodle soup. There she ran into Dr. Wang, who told her in so many words: “Your friend’s problem not big one I think.”

Now that’s my kind of fortune cookie.

May it be so. May it be so.

A sweet and healthy New Year to all.


En Route

September 18, 2011

The little screen on the seat back shows a moving map of the plane: the animation depicts the globe with a white aircraft hovering above a solid yellow line, marking the distance covered, and a broken yellow line indicating miles to go. According to the screen, we are somewhere above the Bering Strait. Only 5,000 miles more.

The window tells a different story. The one that astonishes: a sea of white clouds and glaciers and snow-covered mountains that appear to be split in two by frozen rivers, forming perfect complements, an awesome jigsaw puzzle of a barren and perfect landscape softened by the gentle pink of the rising sun. Or is it rising? The colors appear to just rest on the horizon. Of course, we are also flying west at a ground speed of over 500 miles per hour.

Sara says we are supposed to sleep. She told me to set my clock to Hong Kong time as soon as we boarded this afternoon in Toronto. Even after so little sleep after a long night of packing and days––weeks? months?—of ceaseless preparations, I still can’t sleep. The frozen, white sea with its dark flowing cracks like a Japanese ink brushed across a blank page has captured my mood and my imagination. And what can one do when faced with such stark beauty, when allowed against all sensible laws of nature to peer into the majesty of the earth but feel called to pray.

This is how it is when you awaken in a new world.

Years ago I went scuba diving for the first and only time of my life. I was traveling in Israel for a month and ended up in Eilat with a day to fill in the blazing August heat, and so I found myself heading for the sea, a tourist attraction on the Gulf of Acaba called Dolphin Reef. I told the young woman at the ticket booth that I wanted to snorkel with the dolphins. She gave me a bored look and said: “Why not go diving instead? It’s so much better that way, don’t you think?” Suddenly, I felt unadventurous for wanting only to snorkel. The previous three weeks I had traveled around the country alone, riding horses in the Galil, traveling by donkey through Petra. In a number of hours I would leave Eilat to begin a camel trek through the desert.

I signed the waiver. Moments later I was in a wetsuit, with flippers, snorkel and mask. Someone put an oxygen tank on my back. Another person showed me how to work the controls, and demonstrated the hand signals I would use to communicate with the diving guide who would accompany me. His name was Ronin, a name from an Irish film I had seen about humans who become seals. In his dark shiny wetsuit, Ronin looked like a seal.

Soon he guided me down the beach and I took huge, awkward steps in my flippers over the sand and into the turquoise water. When the water closed over our heads, I thought we would resurface until I was comfortable, but Ronin had taken my hand and guided me deeper. The black waves of panic buzzed in my ears and I thought this would be a good time to use the distress signal, but a voice inside me said “breathe” and I did, until the steady sound of my echoey breaths calmed me and I could kick my flippers and swim alongside my guide. Then I could see.

Have you ever experienced hyperawareness of your reality? Like you might be in the middle of doing something so normal, something you’ve done hundreds of times, like practicing yoga, sweat dripping on your mat, and suddenly you wake up in your body and think: I am here. Here I am. The teacher tells you to bend forward. You bend. She then tells you to jump back into high plank. You jump. But you think: Who is this doing the jumping?

I am here.

With eyes that didn’t know what it was to see. With a mind that had never imagined becoming part of the ocean, I woke up to the neon colors of the coral reef. Speckled yellow fish, spotted orange fish, fish wearing the watercolor pallet of Monet. Swimming in this living rainbow, I had forgotten all about the dolphins, who brushed past us with their high-pitched clicks. I wanted to laugh, or sing, or at least say the “shekiyanu” but my mouth was silenced with the oxygen.

Our origins begin in water. And it was in the sea that ghastly hot August day that I knew what it might mean to be reborn, as in the sudden jolt of consciousness that marks the end of one life and the beginning of the next.

The dotted yellow line on the screen that our animated airplane follows leads me to Hong Kong, China. From there, Sara and I will collect our 200 pounds of luggage (160 of it mine) and drive 2.5 hours northwest to Dongguan, where I will meet Dr. Wang on Monday to lay the groundwork for the next two months of sono-photodynamic therapy, the treatment that I pray will guide me to remission.

Mile after mile, the screen shows me, we are getting closer to our arrival.

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