Archive for November, 2011

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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.

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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.

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