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The Eye of the Storm

April 10, 2013

Warning: This is a long post. On the recent occasion of my son’s third birthday I finally wrote his birth story.

The birth of my youngest son came with a fair bit of drama. I could begin the story with “It was a dark and stormy night,” but that wouldn’t do justice to the winds that shook our house and downed trees and power lines the night of February 25, 2010. One unofficial record logged winds in excess of 90 mph.

The rain poured down all day while I felt intermittent sensations in my pelvis, and drove down even harder during evening rush hour when David uncharacteristically phoned for a ride home, suddenly sick with stomach flu and too ill to cycle, and into the night rain pummeled the little Cape we had just bought and leaked through the skylight and seeped into the basement where at 40 weeks pregnant and with regular contractions I frantically mopped up puddles and said “oh shit” to the cat not because the house that had drained most of our savings was imperfect but because it finally dawned on me that I was in labor.

I want to record Leo’s birth story as a gift to my son. One day he might be curious about his origins and this story will give him some clue, a starting point to tease out the narrative threads of his life. Naturally, this is also my story, and it is followed by so much disappointment, fear and seemingly unending grief that I have turned away from it.

When I was in college, I took a creative writing workshop with the poet Olga Broumas. On the first day, Olga explained in her soft and serious manner that we write poetry with the soul, and invited the twelve eager undergrads staring at her with mouths agape at the mention of the word “soul” in the halls of a rigorous academic institution to leave our egos at the door. She gave us exercises like writing poems backwards, generating lists of words we adore, and once she assigned us the challenge of writing about a relationship with someone we loved. The difficulty was that we had to write about the good stuff. “Bracket the relationship,” she said. “Write about the love, and not the pain and disappointment or anger that come later.” I was nineteen years old. That was the only way I had ever understood a relationship. I ended up writing about Sophie, my best friend from high school, with whom I had just traveled cross country putting over 12,000 miles on my sister’s car as we meandered up the Pacific coast and crisscrossed through the strange and beautiful moonscape deserts of the southwest.

Why does Olga’s assignment come to mind more than 20 years later as I attempt to write Leo’s birth story? It’s the brackets. It’s the guidance to stay with the love and not delve into the difficulty, which of course would come later, exactly 32 days later, when I received the call confirming that the bleeding polyp in my rectum was in fact cancer.

A diagnosis cleaves one’s life in two: time will always be marked by before and after I heard those two words strung together in the simplest phrasing: It’s cancer. Not even three words. A contraction. It’s cancer.

Is it possible to simply decide to step back in time? To tell this story from the other shore, the life of innocence that existed before the lens of cancer changed all of my perceptions? Can I write this story without robbing my second born of the full attention and gratitude that he deserves? Write about the love, not the heartache….

*****

It was a dark and stormy winter’s night. I tucked Toby into his new big-boy bed, said an early goodnight to my mother-in-law, who was recovering from her bout with the intestinal bug making its rounds through the house, and checked on David who never gets sick but had gone down hard since coming home and dragging himself upstairs. I found him shivering under the down duvet, curled in a little ball, moaning. He barely had the strength to tell me that he felt awful, which was quite apparent. I piled a few more blankets on him, kissed his clamy forehead, and turned out the light.

The house was quiet, but I was restless. It was the damned wind. Wind always made me feel agitated. I wandered downstairs to the basement to check on our neglected cat, whose perch, food, and water are kept away from the main living quarters out of deference to David’s severely allergic family. That’s when I noticed the water. Puddles of it were amassing at the edge of the bulkhead door.

I grabbed every towel I could find among the mountains of unpacked boxes and stuffed them near the door in a lame attempt to staunch the flow of water. In my mind, and under my breath, I was cursing David for being sick at a time when I needed him. I wrung out towel after heavy towel of cold water, squatting awkwardly over my enormous belly. “Great, just great,” I muttered. My belly answered back with strong, low contractions that were getting uncomfortable enough to finally capture my full attention. “Oh shit,” I said to the fat fluffy cat who was watching me with feline detached interest from his perch in the corner. “I’m in labor. During a flood. With a sick husband and a midwife about to fly out of town. Great, just great.”

I marched my self-righteous, over-achieving Aries self into the playroom and began tidying up, well, frantically throwing toys is a more accurate description. Nothing satisfies me more when I’m all hot and bothered than throwing toy cars into large heaps: ting, clang, pop. How many cars does a two-and-a-half year old need anyway? I had imagined using the playroom for some aspect of my labor and I needed the environment to feel orderly and peaceful. Although I knew Toby would complain that I broke his train set, I had to dissemble his wooden railway since it took over the entire floor. Bridges came down. Tunnels disappeared. Curves and straightaways gone in minutes. Thwack! Thwack! I closed the lid of the Thomas the Train box and with arms down and butt up, pushed the heavy container against the carpet and into a corner of the playroom. By now, I had worked up a good sweat.

Days earlier I had met in the cheerful orange-yellow playroom (Benjamin Moore calls the color August Morning) with Sara and Halé to talk about the birth. The sun shone through the two half-windows warming the walls to golden tones that indeed looked more like late summer than late winter. We curled up on the full mattress on the floor beneath the tapestry of Ganesha, the Hindu elephant god known for removing obstacles, and sipped steaming mugs of kukicha tea. This small circle was in lieu of a blessing way, and all I had energy for after moving house three weeks earlier and caring for a toddler who was so heavy I had to ask strangers to lift him in and out of the shopping cart at Whole Foods.

Halé, dear friend, colleague, and surrogate grandmother to my children, was in Turkey during Toby’s birth two-and-a-half years ago. But Sara had been with me through the 24 hours of back labor at home, the passing of meconium, hospital transport, fetal distress, and midnight emergency caesarean. It felt as though lifetimes had passed since Toby’s birth—the immediacy of his ever-changing needs made potty training and the battles to get dressed much more pressing realities than resolving my feelings about the difficult birth.

Days from giving birth for my second and final time, sitting with my friends in what should have been a joyous moment, the unhealed wound of Toby’s birth ripped open anew, and the feelings of regret and failure and unresolved trauma tumbled out of me like pieces of broken glass.

I let it all out. The feeling that I would fail again. The fear that I was too scared or weak to endure natural, unmedicated labor. The secret truth that after so many hours of exhausting labor, I was secretly relieved to go to the hospital and have someone else take control. I didn’t care how my words sounded, or what my friends who had each birthed babies at home might think of me. I just let the raw anguish surface, being more honest with myself than I had ever been in my life. Something deep inside told me that I had to be utterly honest, or else these unconscious fears could take over and create a situation I really didn’t want to play out. My practice of radical honesty, as I’ve come to call it, began that day, and has served as a reliable guide ever since.

Unlike Toby’s birth, I wanted little fluff and fanfare for this baby’s labor. No giant birthing spa. No candles. No music. I would not invite a dozen friends. But I did hire a birth doula and made David upgrade our hot water heater to a 50-gallon tank so I could take long, hot showers if necessary. And, after much thought, I invited my mother-in-law Linda to be present when it was time for the baby to be born since she is so devoted to her grandchildren. Halé and Sara were also on call.

The decision around how to birth Leo took many months of research and appointments with my home birth midwife, hospital midwives, and O.Bs. I knew I wanted to attempt a vaginal birth after caesarean (VBAC). My home birth midwife, Miriam, supported me implicitly in having both a VBAC as well as birthing at home (HBAC). The hospital presented a different version. The O.B. made it clear: under no uncertain circumstances would she support a home birth for a woman who had previously had a caesarean. The hospital midwives were only somewhat more amenable: they wholeheartedly supported VBACs, but with the risk of uterine rupture they felt I belonged in the hospital, just in case. (The midwives were so intent on convincing me of a hospital birth that they dismissed every one of my concerns about rectal bleeding, which started in my second trimester. Not a single note went into my chart. Finally, Miriam was the one who urged me to consult my primary care physician.)

I called Mitch, Sara’s husband who is an OB/GYN and an extremely fair-minded advocate for women and natural birth. He laid it out: the risk for uterine rupture is low but real; it happens without warning, and if it does there isn’t a lot of time to get the baby out. “And if it were Sara?” I asked pointedly. He paused for a moment, “I’d probably respect her wishes.”

David would back up any decision I made. I knew in my heart of hearts that the man who cried watching home birth preparation videos hoped for the peaceful, natural birth we didn’t experience the first time, and that he would support my decision no matter what.

I toured the labor and delivery unit of the hospital. Since I am so visually imaginative, I though that seeing the physical space would help me make up my mind. It did. They explained how they would insert an i.v. line when I was admitted, and there was that caveat again, just in case. I would also be on continuous fetal monitoring, just in case, and I couldn’t eat or drink anything. Why? Just in case. The hospital was already prepping the OR before I went into labor! They didn’t seem to have much faith in my body. But did I? Shortly after visiting the unit, I had a dream. I was in labor, strapped to a bed, paralyzed, utterly powerless, writhing in pain. I posed the question to myself: Where will I feel most afraid? Then I rephrased it: Where will I feel the safest? I called Miriam and asked if she was available for a home birth in February.

At 9pm the evening of February 25, the evening my labor started, Miriam in fact did not know if she would be available. She was scheduled to fly to a midwifery conference in Arizona, but her first plane had mechanical problems and the next flight was canceled because of the weather. “I think I’m in labor,” I told her. “Oh?” she asked with calm interest. We had communicated earlier that day and I was playing it cool, not wanting to get my expectations up since Toby had been a full two weeks late followed by a long, complicated labor. “I’m having regular contractions and I think I lost my mucus plug a little while ago.” Miriam told me to call if anything changed. Her next flight was scheduled for early morning, but her partner was on call to attend the birth if she was unavailable. I had known all along that Miriam had plans to attend the conference and might miss the birth, and while I had accepted this possibility in theory, the onset of contractions and the uncertainty of planes taking off left me feeling vulnerable and, well, just a bit abandoned.

The house in order and tucked in for the night, I went upstairs to my bedroom. David was still in fetal position, moaning softly, telling me how he couldn’t get comfortable, telling me he had never been so sick. Another contraction tightened my lower uterus into a taught drum. “I’m in labor,” I announced.

He sat up. “Really? Are you sure?” How come men always ask if you’re sure when you say you’re in labor?

“I started feeling sensations at the gym this morning, and they’ve been picking up the last hour.” I sighed. It had been a long day. I was tired. I didn’t really feel like having a baby. What I felt like doing was going to sleep.

“What do we do? Did you call Miriam? How about the doula? Ohhhh…” he trailed off with a groan of pain and curled back up, clutching his torso.

“That bad, hunh?” I wanted to feel sympathetic for David, suffering as he was in the purgatory between vomiting and diarrhea, but to be honest I was a bit miffed that he was robbing me of my thunder. How many times would I be in labor, after all? This was kind of a big moment and David was—how shall I say it?— he was just flat out useless. Again, I felt irrationally abandoned.

I climbed into bed next to my sick, sweaty husband, and for the next three hours we held hands while we lay awake, listening to the wind, each of us breathing our way through contractions. It was actually sweet. Since becoming parents we rarely had time alone together. It was kind of like a date night.

Sometime after 3 am, David drifted off to some version of sleep, and I was alone with my contractions. I used hypnobirthing techniques to count the waves of tightening and release, sending the discomfort up and out of me like a balloon. A red balloon. With a long string. Carried by a breeze through fluffy white clouds. It helped to see it. After sending hundreds of red balloons into the clouds, I began to feel lonely and sad. Then two realizations dawned on me: the first was the stillness. The house no longer shook. The wind had completely died down and the rain had tapered to a soothing patter against the windows. The second thought, which I should have had much, much earlier, was that I had hired a doula. I didn’t have to be alone with my contractions and fears in the middle of the night!

Erin answered on the second ring, sounding remarkably alert. How long have you been feeling contractions? How intense are they? How close together? Can you try to sleep? I feared she would just triage over the phone and tell me to call in the morning. There was a break in her questions. “Do you want me to come over now?” I nodded my head in the darkness. “Please,” I whispered.

Everything changed when Erin arrived. She lovingly and firmly guided me deeper into labor. The hypnobirthing had been soothing, and kept me relaxed and above the gathering waves of contractions, but it was time to let go and explore deeper waters. In the warm cocoon of the playroom, illuminated by a string of little lantern lights, Erin and I spent the last hours of night encouraging my body to open.

As the room brightened with the first light of dawn, Erin called Miriam with an update. She handed the phone to me, but another intense contraction started and I knew if I didn’t keep to my very specific pattern of counting that I would lose my rhythm. I had let the last of the red balloons float away long ago and as the work of labor intensified I instead clung to my breath to guide me through the sensations that rippled across my abdomen, wrapped around to my back and penetrated low in my cervix. Breath and toning and counting and Erin’s strong massage therapist hands on my back were the lifelines that kept me flowing through labor. I could hear Miriam say, “Oh that sounds great!” as she listened to my deep “oms.”

Erin hung up and smiled. “I have news I think you’ll really like. Miriam cancelled her trip. She’ll be here in an hour.” Oh, the sweet, sweet relief that coursed through me. I loved and trusted Miriam, and I couldn’t imagine anybody else guiding me through this most intimate of journeys. Knowing she would be with me gave my body further permission to let go.

From our cozy womb in the playroom, I listened to the sounds of the house waking up, and eventually waddled upstairs to the kitchen where Toby was playing with his cars, waiting for breakfast while David was in the bathroom tending to his tender tummy. Between getting the cereal boxes from the cabinet and slicing the banana and pouring the milk, I held onto the kitchen counter and breathed, squatted, and “omed” my way through the contractions that were coming with greater frequency and intensity. Erin fixed herself a cup of strong black tea while managing to always keep those crucial hands on my lower back.

My mother-in-law emerged from the guest room to find me in the middle of an “om.” She did a double take. “You’re in labor!” she exclaimed. I nodded my head mid-om, unable to speak. Toby sat at the counter slurping down his cereal, blissfully unaware of the unusual morning circumstances. Linda told him that his mama was going to have the baby soon and that when he came home from school he would meet his baby brother. I hoped she was right. I hoped the labor would be over that soon.

Erin, always attentive to the changes in my body, suggested I try the shower. My back ached with every contraction and the thought of hot water pounding on my lower back seemed extremely appealing. While undressing, a particularly powerful contraction took me by surprise. I launched myself at the bathroom vanity for support, and unconsciously rose up on tiptoes to try and escape the overwhelmingly powerful feeling of being pried open from within. For the first time since labor started I thought: “I want out! Just get me out of this body.” Erin recognized the signs of a woman overwhelmed by labor. “Shira, come back into your body.” She locked eyes with mine. “Don’t fight against the sensations.” To tell you the absolute truth, that was the worst of it. Of course the labor had many, many uncomfortable sensations, but I never suffered because my mind was almost always at peace.

I used every delicious drop of hot water in our brand new 50-gallon tank. It turned out that I was in transition, the most difficult part of labor between 8 and 10 centimeters, but I didn’t know I was so close to full dilation because nobody was checking my progress. I wasn’t on anybody’s clock. The contractions came closer and lasted longer, and my toning picked up volume. David poked his head in the bathroom to see how I was doing, and to tell me that he was taking Toby to school. “No, you’re not!” I yelled, thinking he must be the most foolish husband in the world to even consider leaving now. “Okay,” he said meekly, “I’ll ask my mom to do it.”

Miriam arrived just as I stepped out of the shower. She had a huge smile on her face, and wrapped me in a big, big hug. I was so glad to see her and her many bags of official-looking equipment. “This is really happening,” I said to myself. Up until then I hadn’t fully grasped that I was going to have a baby, soon, and at home, through my vagina. I said as much to Erin. She looked at me intently. “Yes, you can do this. You are doing it.” And for the second time in twelve hours I said, “Oh shit.”

I convinced Miriam to check my cervix, though she didn’t feel the need. After listening to the watery swoosh, swoosh of the baby’s rapid heartbeat with the Doppler, Miriam checked my progress. I steeled myself to hear that I was only 5 centimeters but to my surprise, delight, and unbelievably sweet relief I was 10 centimeters and fully effaced. “You can try pushing any time,” she grinned.

And that’s when another realization dawned on me: like the storm earlier that night, my contractions had also died down. I felt calm. I felt….nothing. “Is this normal?” I asked slightly panicked. Miriam laughed, and reassured me that sometimes nature gives mothers a break between the opening phase and pushing phase of labor.

We used this natural pause to prepare my bedroom for the birth. Miriam instructed David my Yankee husband who keeps the thermostat at 65 to turn the heat up high, and to set out all of the supplies we had so dutifully gathered from Miriam’s list. Meanwhile, Miriam spread out a waterproof red-and-white checked picnic tablecloth on top of our new white carpet, and on top of that she placed the birthing stool – a padded U-shaped stool that would allow me to squat without tiring my legs. That’s because I was about to have a baby. From between my legs. In my bedroom. Right.

We tried a few positions to see if we could get things moving again: on the bed, side-lying with one leg up, on all fours, even sitting on the toilet. It was kind of like going through the Karma Sutra (minus the last position). Finally, I opted for the stool. David, tired and still pale green though at least not groaning any more, sat behind me and supported my back. When the contractions began again, I imagined breathing the baby gently down and out, as I had learned in my hpnobirthing classes. Between contractions, I sipped water and chatted. When the contractions started again, some fierce demanding woman took over. I yelled at David: “Put your hands here. No, there. No, here. Higher. Lower. Don’t touch me so hard. More pressure.” The sweet man just tried to comply.

At some point, Sara showed up and relieved David of his position, since he had already fatigued of his duties and my relentless commands. Then Halé appeared. Finally, Linda stood in the corner of the room palpably bubbling with excitement. Miriam gave me periodic reports from down below: “I can see the head. Ooh, this one has a lot of hair, too. You sure do make babies with lots of hair,” she said remembering Toby’s cap of thick black hair. “Reach down and touch your baby.” I reached my hand down and felt the hard skull of my baby between my legs. My hand instinctively wanted to recoil at the foreign feel of something so hard, so strange, so alien emerging from my body. Then Miriam handed me a mirror, and I could see the little tufts of hair through the stretched membranes that still held him in his own little bubble.

I had been pushing for an hour, the baby sliding down, then slipping back up, sliding down then slipping back up, when Miriam told me with the matter-of-fact authority of her 35 years of midwifery that while hypnobirthing is very beautiful, I would have to actually push this baby out. “Push,” she said again, “right into your bottom. Just like you’re having a bowel movement.”

I got the message. On the next contraction I let my animal out: low, deep tones escaped while I bore down with all of my muscles and intention. I had always sensed there was a wild, ancient, powerful woman inside of me who knows the ways of the earth and the rhythms of the heavens. Sweat flowed down my chest and onto my belly. I begged for sips of water. The room was hot and I was becoming feral. In front of my husband, mother-in-law, mentor, best friend…I just went for it. The scene behind my closed eyes was not a pale yellow bedroom in suburban Boston but the dark forest floor dank with decaying leaves and sweet pine.

When I finally gave myself full permission to release into the potency of birth, the wonder of blood and bones and the native intelligence and miraculousness of the female body to form this incomprehensibly complex new being inside my own, I tapped into the deep vein of power that runs like a current through all life. I became life force. It was the most satisfying, exhilarating feeling I had ever known. The thought that went through my mind at the time was much simpler: “This is actually fun!”

Then Sharon Olds’ poem about childbirth came to mind, the one in which she equates labor to sex, and I had always figured that she linked it to sexuality because that’s just what she does, but then there was my son’s head between my legs and this sensation of simultaneous wild abandon and deepest union and I understood that she wasn’t speaking metaphor but exacting truth: “that moment when the juiced bluish sphere of the baby is sliding between the two worlds, wet, like sex, it is sex, it is my life opening back and back….”

When the next contraction climbed in intensity I knew I would rise up to meet its force, and with one deep, final, long push, Leo’s head cleared the bones of my vagina and with it the rest of his body shot out of me all at once, giving meaning to the designation “baby catcher,” which is what my midwife became when she literally caught him in her hands. Behind him rushed the now- broken waters of the amniotic sac, drenching my water-loving boy in his first warm bath. Oh, how stunning this small dark creature with thick sensual lips and a head full of slicked hair that emerged from my womb.

I can’t remember what happened next or in what order, but I think my mother-in-law repeated “Oh my God” over and over again. Leo must have cried then calmed. Sara and Halé might have laughed, and beamed love from their eyes into my heart as they do. David cried, didn’t he? He cut the cord so its precious blood could be banked. Then someone helped me onto the bed, where I took off my sweat-soaked shirt to welcome Leo’s tiny naked body on my own, skin to skin under the warm blankets. I probably thought to myself: We did it! No, I’m sure I thought that, because up until Miriam had declared me fully dilated I still wondered if fear would sabotage the labor and send me in an ambulance to the O.R.

I could trust the goodness of my body, after all. The evidence was nursing at my breast, sleepy from his long journey, and disoriented by so new and strange and shining a world. Leo, my fierce little lion who decided to enter this lifetime during the most turbulent of storms. It was late morning by the time everyone went home and I had the chance to snuggle under the covers with my new little love and finally sleep. The sun shone so brightly through the window, I had to shield my eyes from the light.

******

I started this story with brackets, challenging myself to look at the event of Leo’s birth and only that event as though we could ever isolate any moment from the continuum of experience. But the thing about stories—their absolute magic and alchemical power—is that we can step into them at any time and change them, as well as be changed by them. I see now that it’s not a matter of remaining faithful to time but to truth. And the truth is that during these last three years of cancer, surgeries, chemotherapy, decisions, alternative treatments, extended time apart from family, more diagnoses, more fear, more decisions, Leo’s birth has been a deep well of strength that I return to drink from often.

The labor was an initiation through water and fire and earth and wind. I learned to trust myself, to listen to the strong voice of authority within regardless of other opinions. To trust that my body is capable of more than I ever give it credit, and so the dream of perfect healing is a real possibility that exists in the imprint of my cells. And when I feel frightened by unfavorable test results or the icy chill runs through my veins awake at night in bed and I think “cancer, shit, how will I get out?” I remember the woman who birthed her baby at home and was not undone by her power but remade by it.

And so I say thank you to my precious boy, my golden-eyed, golden-haired Leo Ezra, Ariel Eden, Lion of God, who arrived on the storm and continues to guide me through it.

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Full Circle, Again

October 17, 2012

It’s Monday morning. I dropped Toby off at his new elementary school just in time for him to dash across the street and merge into the line of children with identical LL Bean backpacks falling off their shoulders, teary-eyed parents, and strollers with younger siblings wending their way around to the entrance closest to the kindergarten classrooms. Leo and I waved goodbye and drove the few blocks to Leo’s new family day care. All morning Leo recited his new mantra: “No Heidi’s house,” punctuated at various moments by “Mama come through the gate.” I left my crying two-and-a-half year-old in Heidi’s arms with snot running down his chin and streams of drool flowing generously from his teething mouth onto her shirt. “No Mama leave,” he sobbed while arching his back out of Heidi’s grasp toward me. I gulped back my tears and the urge to take him in my arms and never let him go. Instead, I stepped purposefully through the door without looking back, lest I turn into a pillar of salt and do nobody any good.

As I rushed from Heidi’s house to my appointment at Dana Farber, I was aware that most parents drop their children off and head to work, or the gym, or return home to their home offices or younger children. I don’t know why I continue to make these fruitless comparisons; they always make me feel shitty. It’s not the appointments at the cancer hospital that make me feel angry and exiled from the normal moms with their normal lives and normal troubles; it’s the cancer.

As I lay on the table in the chilly CT room with my arms raised above my head, receiving instructions from a digital voice to hold my breath as the narrow bed slid on its track in and out of the large donut tube, I found myself surprisingly at peace. Of course scans make me nervous, and before this scan I felt the usual flutter of nervous “scanxiety” that normally seizes me the week before my tests. But lying there with my eyes closed my anxiety miraculously and suddenly calmed. I know what I’m about to tell you will sound extremely cliché, but I felt the comfort of wings surrounding me. Honestly. I think angels are wonderful, beautiful, iconic, but they’ve never been my thing. I suppose I don’t really understand angels; in fact, I find them somewhat terrifying. But what really surprised me on the CT table, what caught me completely off guard was that the sensation originated in my own shoulder blades. They were my wings.

I know I haven’t written a post in many months, and I am sorry if this caused anyone to worry. The truth is I have just been so focused on the children and feeling somewhat private and protective of our lives together ever since my return home last February. I’ve also been a bit more tired, traversing yet more treatment decisions as the good results I achieved in China have been challenging to maintain. So to jump right in after months of silence and tell you that I feel the shadow of wings on my back may seem like a strange way to begin again.

Or maybe it’s exactly right. Lately, I have been thinking a lot about why I got cancer. When I was first diagnosed, the g.i. doctor made the easy assumption that it was genetic. But it’s not. My primary care doctor told me that it was just a game of numbers, the odds after all are that 1 in 2 women will contract the disease and fate just happened to pick me. (Yes, you did read that correctly. This stat comes from the SEER database (http://seer.cancer.gov/statfacts).

The oncologists said it was probably growing for a long time but they made no attempt to cite an original cause. When the sting of the new diagnosis was still fresh and I felt entirely robbed of the joys of new motherhood being diagnosed so soon after Leo’s birth, I would cast a scornful eye at all the unhealthy people I encountered on the street or in the supermarket, filling baskets with soda and bags of processed foods. My critic was merciless. How come they didn’t have cancer and I, with my relatively healthy lifestyle and knowledge of organic foods and colon cleansing (I mean, I did coauthor a book about the subject) had to go through this?

Eventually, I came to see the opportunity for greater self-awareness and deep healing. I realized that everyone has their own version of “cancer,” their own brand of challenges and fears. I came to a certain peace. Or did I?

This summer I took up some research into cancer and its possible causes yet again. I read up on mercury, and finally had the amalgam removed from my mouth. I read again about a possible link between parasites and cancer (Hulda Clark’s perspective) and ways to cleanse parasites from the body. I wrote to my friend Steven, a five-year lymphoma survivor, to see what he knew about this. He responded to my email with links and helpful information, while managing to gently tuck in the following questions: “I am very interested to know what gift you have received from this dis-ease? Why do you think you manifested it?”

“Oh man,” I thought to myself. “I am in no mood for this.” Some days I am exactly in the type of psycho-spiritual vibe to contemplate this line of inquiry, but back in July with the skin on my eyelids and neck burning to a crisp every time I even thought about the sun and my face freshly broken out in ugly, juicy pimples like an adolescent thanks to the Erbitux biotherapy infusions (which didn’t work) and utterly exhausted by the kids and the house and cooking dinner every night and shopping and laundry and driving, well it just didn’t hit the right chord.

Steven has the luxury to think about these things because he doesn’t have children and does yoga and meditation and takes month-long permaculture courses and fasts on juice for weeks at a time. I mean, the man lives in the mountains of Thailand for God’s sake! I rolled my eyes at his questions and dismissed them as “Steven being Steven.” And Shira being Shira continued fiercely with the daily business of life and doing.

But the thing about Steven is that he has this way of asking you how you are and sincerely meaning it. He puts his arm around your shoulder, peers into your eyes, bends close and waits for an answer with every breath as though you were the only two people on the planet. From halfway across the world, I could feel that searing yet loving presence, the nudge to go deeper, to face myself stripped down and in the barest of honesty. I guess Steven did hit a chord after all, and when I listened I could hear the note reverberate within.

In the comfort of the brown leather chair on the third floor attic room of my therapist’s Victorian house, I closed my eyes and let the tears fall. According to Traditional Chinese Medicine (TCM), the lungs are identified as the seat of sadness and grief. Both of my lungs are sprinkled throughout with small tumors that glow bright white against the gray background of Cat scans. They frighten and fascinate, these little, deadly illuminations. I tell my therapist that I think the tumors in my lungs are calcified tears, the hardened skeletal remains of all the sadness and grief I held onto in my life.

Just as the lungs hold grief, the liver is the supreme keeper of anger, resentment, frustration, irritability. If the tumors in my lungs are hardened tears, then the plump toad of a lesion sitting in my liver is hot, hot, hot, red hot, no, white hot shrieking irrational rage. From all outward appearances I seem to have so much together, but my liver tells another story, and it is old and in a language I don’t always understand.

I ask my therapist: “Why did I get cancer?”

She asks: “Why did you get cancer?”

Then she asks: “Are you ready to let it go?”

She sits across from me in an identical brown chair. She too went through chemo, hair loss, the intrusion of constant monitoring. She sips from her large mug of tea and waits for my answer. Her loving presence reaches across the space between us, like an arm extending out to wrap around my shoulders. She waits.

“Close your eyes,” she says. “Go within. Ask yourself.”

I close my eyes. I go within. Down, down, down, I continue down the corkscrew spirals of a dark interior that feels fecund and earthy and moist. I realize that I am in the underworld. Of course. My recurring obsession. Gilgamesh. Persephone. Innana. Orpheus. Dante.

At the bottom of the world, I sit in darkness. I don’t have to wait long until a figure appears there with me. “Grandmother?” I wondered to myself, hoping that I would see the friendly wise face of the guide who has often come to me in my meditations this year. As the image becomes clearer, I realize it is not grandmother. It is, in fact, my own reflection.

Face to face. Myself. In the circle of the lowest depth. I ask: “Am I ready to leave cancer?”

“Not yet.” The answer unsettles. But I recognize its truth: I know there’s more to learn. More to release. More to come to terms with. Why is there always more?

“How will I find my way out?” I whisper.

The panic rises as I realize how deep I am below, and how far daylight is above.

And then the way shows itself. Easily, as though it had always been there, a spiral staircase appears, reaching up and up and up with every twist higher toward what I can only imagine is sky, air, light, hope, healing, future. It is not mine to climb just yet, but as I investigate closer I see that the staircase is not made of wood or steal but words, a double helix spiral of words. They are these words that I write now, the ones that float in and out of my consciousness all day, rewriting my story from powerless victim to open, attuned conduit of life force and love. Such immense joy I feel to see my life’s path! I will write my way out of the underworld one word at a time. I will rewrite my DNA.

I notice the dark air around me is full of sound, and it’s coming from the staircase of words. Oh what music. I wish you could put the spiral of your ear to the ground and hear this angelic choir emerging from the deepest center of the earth, where I sit and wait, gazing up in awe and rapture at the possibility before me.

The last time I saw my oncologist, we reviewed the results of the Cat scan, which he later dictated in his office note as “promising.” We agreed on our plan of action – basically, to stay the current course of treatment with my little oral cocktail of pills – and then I asked him about other procedures and options. I think he’s gotten used to my hunger for research, and my perpetual requests to customize the menu so to speak. While I know I sometimes frustrate him with my inquiries and outside consultations with other oncologists and practitioners, I get his goodness and that he really does want to help. As we said goodbye, I blurted out, “Next time we meet I will tell you how this is really the underworld,” I said gesturing to the generically handsome hallway of Dana Farber Cancer Institute. “Okay,” he said  with a furrow in his brow.

Later, at home, the kids hit the witching hour of 5 pm and started to nag, push, and fight with each other for space on the easy chair while I lay on the couch with the unspeakable exhaustion that sometimes overtakes me late afternoon, and especially on days I have to go to the hospital. “Okay,” I said popping up suddenly, “let’s take this to the ground. Come on little puppies, time to roll around.” I moved the table out of the way. The simplest change in physical environment immediately shifted their energy. I lay a blanket on the rug. “Who wants to roll up first?” Toby pushed his little brother out of the way and plopped down on the soft wool blanket. I rolled him up and suddenly he became a pupa, wriggling around in his chrysalis. “Is the butterfly ready to come out?” I asked. Toby giggled and wriggled more, and then with great force he broke free of the dark blanket and began to move his arms slowly as though he had just sprouted wings and was uncertain how to use them. “Leo’s turn! Leo’s turn!” Leo squealed, eager for his chance to become a butterfly.

We played until David came home an hour later, and then nearly every day for the next week the children pushed the coffee table to the side and said “let’s play metamorphosis.” I watched those boys who came from my womb reenact that most primal transformation, from darkness to light, formlessness to form, again and again, never tiring of the game. Every muscle and thought in their compact little bodies focused on the moment, which buzzed with their raw vitality. I’ve traveled the world and have tried dozens of healing modalities. And what I know with absolute certainty, what my five- and two-year-olds have always known, is that the impulse of life is toward life. And it really is that simple.

As for Steven’s question, I think that I’ve always known the answer. It’s a feeling I can remember having my whole life–and maybe even longer than that–and it has to do with suffering and God and our connection to life. I’m still living inside the question, feeling along its edges and interiors. And as I continue to experience the kindness and caring of so many people along this journey, the helping hands that always appear exactly at the right time, and feel myself soften more into love and light and joy, I think I am beginning to get a glimmer of how healing might work. It’s in the gardens we plant and the photosynthesis of the leaves. It’s our hearts, and eyes, and ears opening to each other fully in the present moment without distraction. It’s forgiveness and compassion, and letting go. Healing is in the rivers and the constant flow and change of life, which does include death, but death is just another type of change.

In moments like these when my mind reaches from rapture to connection, to insight, and grasps to find just the right words, it comes in the form of images, the language of poetry. This time, it is the last lines of Stanley Kunitz’s poem “The Layers” that play in my mind. In an interview about this poem, he said: “In the middle of the night, I’d had this dream of a voice out of a cloud, and this is what the voice spoke to me.”

In my darkest night,
when the moon was covered and I roamed through the wreckage,
a nimbus-clouded voice directed me:
“Live in the layers, not on the litter”
Though I lack the art to decipher it,
no doubt the next chapter in my book of transformations is already written.
I am not done with my changes.

h1

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.

h1

Home

March 20, 2012

Toby and I lay together in bed. The environmental LED nightlight cast a green glow in his room, making it feel like we were in the big tank at the Boston Aquarium. Since returning home, Toby only wants me to put him to sleep, which doesn’t make David feel all that bad since Leo only wants him to put him to sleep, which makes me feel horrible. But at least Leo now lets me hold him, which he didn’t for the first few weeks they visited in China. If he wakes in the middle of the night and I go to him he still asks for Papa but when I tell him that Papa is sleeping and Mama can hold him he now accepts my arms, folding his body into mine as we rock on the glider and I whisper to him about the stars and the moon and the sleeping animals and how much I love him and how sorry I am that I had to be away.

Putting Toby to sleep is relatively easy compared to the protracted nighttime rituals of many of my friends. We plug in the nightlight, turn off the lamp, snuggle together under the covers (if I have energy to stay with him), say the nighttime Shema, and give kisses and hugs. When I first came home, Toby put his stuffed animal Cat at the foot of the bed saying he was a big boy. But I guess he must have decided he wasn’t that much of a big boy since Cat quickly resumed her place in the crook of his arm under the covers and he now insists I give her goodnight kisses too.

Like everyone in my family, Cat has had her share of adventures. I bought the simple, hand-made stuffed animal in China from a group of young women with a little shop at the RT Mart supermarket mall. Cat wasn’t the most elaborate of all their wonderful creations – beige, two dark buttons for eyes, a line of simple brown embroidery stitching. She was perfect. Cat would be the emissary of my aching mama love. I packaged her up with some other toys, bags of tea, local English-language periodicals, and other little gifts and sent it all home for Thanksgiving. A month later Cat made her second transcontinental voyage in the outer compartment of Toby’s purple carry-on wheeled suitcase, returning to her birthplace.

Knowing how important Cat had become to Toby, David packed her into his backpack before their return flight home from Hong Kong. But in the chaos and sleep deprivation of those hours before their flight, the backpack, and Cat, were left behind in our friend’s car. No diapers. No snacks. No extra clothes in case of diaper explosions or food spills. No EpiPen for Leo. No Cat. David would just have to make do and be resourceful on the three-plane ride, 24-hour journey home. And he did. And they were fine. I’ve come to admire and frankly wonder in amazement at the resilience of my husband and children.

At home in Arlington, I gave Toby another kiss goodnight. “I’ll see you in the morning,” I said getting up to leave. “No,” he whined pulling me toward him. “Stay with me for a little while.”  I felt the conflict of wanting my own time to relax after a long day, but really couldn’t the dishes and tomorrow’s lunch and emails all wait?

“Okay, just a bit longer.” I climbed over Toby to resume my place in bed and gave Cat a little pat. A friend who was visiting her son in Hong Kong had room for extra luggage and graciously returned David’s backpack to Boston. But I held on to Cat. When she made her second long journey to the United States it was with me, for good, to stay.

“Where does Cathay Pacific fly?” Toby asked me.

“Oh lots of places. China, Hong Kong, the Philippines, Thailand, the United States, Australia. I don’t know. Lots of places.”

“I would like to see those places,” he said.

“Where would you like to go first?” I asked.

“Oh, you know.”

Really, I didn’t.

“To the Philippines of course!” he said exuberantly.

“To see the jeepneys?” I asked.

“Yes to see the jeepneys!” he exclaimed, dreaming of riding those shiny kaleidoscopically colorful long jeeps they use for public transportation in the Philippines. I had brought Toby and Leo toy jeepneys when I came home and Toby was instantly enamored of these wildly decorated vehicles.

“Mama,” he continued. “If you need to go away again we all go with you. I have to go with you because I love you so much.”

I hugged him to me tight.

“I was worried about you,” he said, “well, just a little.”

“Were you worried I wouldn’t come back?”

“No!” he said as though I were the dumbest person on Earth and that was the silliest thing he’d ever heard. “I was worried about that cancer inside you. I don’t like it there.”

“Me neither,” I agreed.

“But I’m not worried about you anymore.”

Maybe it was my way of apologizing to him for going away so long, certainly far longer than I ever anticipated, or for having gotten cancer in the first place, but I promised him that if I needed to make another big trip the whole family would go together.

I have been home for over a month. Slowly I have been seeing people, reaching out, answering phone calls and emails, making lunch and coffee dates. The children and household tasks take up most of my time and energy. I had forgotten how much effort just goes into feeding a family every day. Shopping, cooking, washing dishes. And I’m not talking about three meals a day – that would be a luxury. Our kitchen is open for business all day long. Leo wanders around demanding “snaaaack” and Toby flops on the floor as though he’s hiked through the desert for days “I’m huuuungry” he whines.

I’ve baked two gluten-free, dairy-free chocolate birthday cakes. Gluten-free challah. Corn bread. Corn muffins. Hamentashen for Purim. I’ve made chicken soup, mineral broth, five-element Chinese broth, potato-leek soup, red lentil soup, lamb stew, turkey meatballs. I’ve made fish dishes and hummus, guacamole, and bowls and bowls of salad, nori rolls, and Vietnamese veggie rolls. I’ve baked sweet potatoes and roasted root vegetables. I’ve made frittatas, omelets, and gluten-free quiches.  I’ve blended smoothies and made fresh juices. Oh how I missed my kitchen.

One afternoon while I was chopping or stirring or mixing something up and the kids were munching on snacks at the kitchen counter, our babysitter Claudia said: “it feels complete now that you’re back. It feels like home.”

Almost everyone asks me what it’s like to be home. I tell them it’s a lot of things, a vague and true answer. Honestly, I’m still discovering what it’s like to be back and after four weeks I can tell you that I may never be back. What I mean to say is that I am different. Five months away changed me. And I am so glad.

Last Saturday we attended a Shabbat service with a small, warm, lay-led Jewish community in a neighboring suburb. Sara has been trying to get us to attend this service for a good year now and finally we did. The community apparently knew about my diagnosis and travels to China through Sara, who had accompanied me there and who every Shabbat has been saying my name when asked to think of people in need of healing. Services are held in an 1800’s barn on a bucolic New England estate. Our family was welcomed with big, friendly smiles, and people I never met before welcomed me home.

When it was time for the Torah service, the leader of the community, Daniel, invited me forward to perform the great honor of holding the Torah scroll. I want you to try to understand how meaningful this was to me, what it felt like to be so received by a community I had no direct connection with before, to cradle the holiest of Jewish texts in my arms, its heft surprising and fulfilling a need I didn’t know I possessed to belong somewhere. I walked the Torah around the community so that people could touch and kiss the scroll.

Following Daniel’s instructions, I held the Torah while he undressed the scroll, removing its simple cloth covering and the silver yad used to point to the Hebrew letters as they are chanted aloud. He placed the scroll on the table then said to me: “And now place the cover over it just as lovingly as a mother tucks her child into bed.”

At that very moment, my own children were squirmy, hungry, bored, and just a bit annoying. Thankfully, a friend put out Legos for the kids, and after happily rummaging through the bin Leo grabbed two chunky red blocks and turned them into a train. I knew this because he immediately, and very loudly said “traaain” just as Daniel opened the scroll to read the week’s parsha. Daniel located the passage from Exodus and using the yad read in Hebrew about Moses shattering the first set of tablets when he came down from the mountain and learned that the Israelites had made a golden calf to worship. It is a dramatic scene and one that encouraged lively discussion among the community. While people talked about the significance of the passage, all I could hear echoing through the old barn was Leo’s “choo choo” as he chugged his red Legos along the length of a floorboard. “Traaack!” he said, the word elongating and triumphant in his quickly developing two-year-old mouth. “Traaain!” I couldn’t help but cringe at every sound. I looked at Sara who is my barometer at such moments. She gave me the eye. I caught David’s attention and gave him the eye. “I’ll take them out,” he whispered, “you can stay.”

I turned my attention back to the desert where the Israelites had felt abandoned and hopeless, and in that state of anxiety, that transitional place between the old life and the new one, they resorted to the comfort of familiar habits. What were they thinking those Israelites? Hadn’t God led them out of slavery, performed amazing miracles like parting an entire ocean for them to walk through, and even promised them a land of milk and honey more abundant than their wildest dreams? And what did they have to do in return? Stop praying to idols. No big deal. What’s so hard about that?

God was so furious he wanted to kill them all and find a new chosen people. Moses was so enraged that he threw the tablets to the ground where they instantly shattered, necessitating a second ascent up the mountain to return again with those two iconic tablets.

My sympathies lay with the Israelites. I could understand why they fell off the wagon and resorted to their old M.O. of idol worship. If they were caterpillars on their way to becoming butterflies then they were somewhere in the chrysalis stage where the caterpillar breaks down to a liquid. The Israelites were soup. Rather, they had soupy consciousness, no longer slaves but not yet free either. They were still in the stages of becoming, gestating, getting ready for rebirth.

Sitting in that chilly New England barn with my head wrapped in a scarf because I am bald from treatment, listening to people’s comments on the text and what it means in their lives, I felt the thousands of miles and the many months that I had traveled. It made me happy, and tired too. My life right now is not terribly dissimilar to the Israelites in the desert: I am no longer the person I was who left for China in September and I am still in the process of integrating all the realizations and learnings.

I see the temptation of old habits. They appear like a chimera, a possibility of one life. But I don’t want to fall back into the patterns that kept me spinning in a perpetual craze of anxiety, hurriedness, and fear. These days I find myself choosing to drive more slowly. It’s a small thing. I try to leave myself more time to get from place to place. I refuse to talk on the phone while driving or playing with the kids or cooking a meal. When I am depleted and exhausted by Toby’s behavioral outbursts and loud sounds, I can still lose my temper and scream at him, but I catch myself more quickly and apologize for hurting his feelings.

At the end of the night, before I fall asleep, instead of making a catalog of my day’s failures, beating myself up for being a terrible mother or for not accomplishing anything on my to-do list, including writing a to-do list, I now tell myself a very simple statement. It’s the same every evening, and here’s how it goes: “I forgive myself.” Sometimes I add: “And I love myself anyway.”

I pull the covers up high to protect my head from getting cold. I tuck myself in.

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Leavings and Beginnings

February 16, 2012

While the shower heated up, I began the long, familiar process of wrapping my arm in plastic to protect the PICC line from getting infected. I took longer than usual, relishing the steam that filled the bathroom and took the cold out of my bones. I was skeptical when the stores in subtropical southern China began to display puffy down coats and thermal-lined pants to a population of millions who had never touched a snowflake. By December I was turning on the heat in my hospital room and by January I was downright freezing and back to my usual winter uniform of fleece and wool.

As steam gathered on the large bathroom mirror, I took a good hard look at myself. I reached my hand to the top of my head and combed my fingers through my hair. Long brown strands tangled in my fingers and came loose with the barest of pressure. I threw the hair in the trash, ripped some toilet paper off the roll and bent down compulsively to gather the loose strands on the floor, which always irk me, which I’m always picking up from the bathroom floor. A big fluffy pile amassed in the trashcan. “Be brave girl,” I said to myself as I stepped into the shower. I had avoided the shower for three days because I just couldn’t face the truth that I wasn’t just “thinning”; I was on the road to baldness.

It didn’t matter that I knew what to expect. It didn’t matter that I had already lost so much hair to the hairbrush, the pillow, the wind, to just plain old gravity. It didn’t matter that I told myself to accept my inevitable hair loss. When I lathered my hair with the shampoo and it came out not in tens of strands at a time but in long chunky clumps, I sobbed anyway.

Dr. Wang had brought up a chemo called irinotecan several months ago. He thought I should have four doses of it to improve my chances, he said with his trademark smile. The warning bells went off in my brain. “But I can’t have irinotecan,” I told him, “because I have Gilbert’s Disease.” I fished through my documents and produced the very official-looking report from Mass General with the results of my blood test. “See,” I showed him, “Gilbert’s Disease means that I am at high risk for adverse side effects from irinotecan.”

I don’t know if Dr. Wang had ever heard of my normally harmless and asymptomatic little liver disorder before. He put on his reading glasses, scanned the report, and left my room “to think,” another one of his trademarks. Dr. Wang did think. For weeks we discussed the pros and cons and dangers of irinotecan, and when I returned from my vacation with David and the kids Dr. Wang talked to me again about the drug. “We will use a very low dose,” he said squeezing close the space between his thumb and forefinger. I took a deep breath. I was afraid of this drug. I was afraid that it would give me terrible diarrhea and maybe sepsis. “You really think it will help?” I asked suspiciously. “It will give you more chances,” he said again. “I think it’s very important.”

While Toby and Leo played with the sliding doors in our VIP suite hospital room and the doctors crowded around me awaiting my response, it was my turn to think. Dr. Wang seemed to believe it would help. I was staying in a hospital where they could monitor me closely, and hell it was low dose after all. Toby blocked Leo from sliding the door and Leo began to cry. David rushed to shush them. Reuniting with my family was more than I had even dreamed about. Lying with Toby in bed at night. Holding Leo’s hand while we walked down a flight of stairs. Playing in the sand. Looking for shells. Kisses goodnight. More chances. I would take the drug.

I piled the wet clumps of hair in a corner of the shower. Nobody had warned me that I could lose my hair, and I didn’t check online for side effects since I didn’t want to worry myself. Besides, it was low dose. What could low dose do to me? In fact, the irinotecan had done a number on my g.i. tract. I was nauseous, vomited, had terrible diarrhea and intestinal pain, and had barely eaten for three weeks. When I got out of the shower, the woman in the mirror looking back at me was skinny and balding. She looked like a cancer patient.

How could I go home this way? I felt “outed” and betrayed. What would everyone think? I had purposely traveled halfway around the world, left my family for five months, and accumulated over $130,000 in hospital bills to go through this? Isn’t this what I wanted to avoid? I told so many people that I was seeking a gentler, kinder approach to cancer therapy that was just as effective if not more so than conventional treatment. No, I told everyone that I had found it.

So what did I find in China? After five cycles of sonophotodynamic therapy (SPDT), two rounds of dc-cik immunotherapy, one session of radio frequency ablation, and Traditional Chinese Medicine, I have come to understand that cancer is as tricky and capricious a disease as I always knew. Dr. Wang’s protocol uses SPDT as a foundation that allows for lower doses of chemotherapy, but it alone usually isn’t enough to get a complete response and keep people in remission. His approach makes use of modalities that we don’t have access to, yet, in the States, even for things like immunotherapy that were originally invented there! The man is tireless in his efforts to help his patients, and I appreciate his creativity in using different tools and approaches.

And what of the physical outcome? Am I cured? If you’ve been following my story you probably want to know. Let’s put it this way. I will start off with another Dr. Wang favorite and tell you that generally speaking it’s like this….

We gave the cancer a really good hit. The liver tumor appears dead on ultrasound with contrast, and there’s no blood supply. The lung nodules are a bit smaller (they were small to begin with) and showed no metabolic activity on my latest PET scan. My tumor marker (CEA blood test) is hovering just outside the normal range.

What I understand now is that even “no evidence of disease” on scans is somewhat meaningless for us metastatic folks. Cancer is a systemic disease and even if you can’t see a tumor there’s still a real chance that cancer cells are floating around just looking to set up camp in some unsuspecting organ or other area of the body. That’s why killing cancer isn’t enough. You have to get at the root. You have to create an environment that just won’t allow cancer to grow. And you have to get your immune system back on board.

At the end of my fifth cycle of SPDT with two doses of irinotecan, my immune system was most definitely overboard. Dr. Lu prescribed the by now familiar, and really terribly painful, shot to boost my white blood cells. Nurse Helen came in with her surgical steel tray, dabbed the swab in alcohol, cleaned my arm, and gave me the shot. “Tap, tap, tap,” I told her. “I know,” she said behind her mask, and took a fresh swab and tapped my upper arm to help spread the medicine around.

Later that morning the team paid me a visit. I was writing an email to two former patients who had gone to the Philippines to try a different treatment. I was keeping close tabs on their experience to see if maybe I should follow in their footsteps. The doctors wanted to know if I was willing to try irinotecan again if we lowered the dose. A wave of fatigue hit me. I had been in China for four and a half months, twice as long as initially planned, and I was just so bone-weary tired of it all. Plus I was all alone. I mean, totally alone. Over the previous few weeks, every other Western patient had left the hospital. One by one, patients completed treatment or treatment failed, and they left for home or to try other possibilities in Asia.

I missed Tricia and Terri and Gai and Kevin and Paul and Annette and Ben and their triplets. I missed the community that we had created on the 16th floor. Had they been there, I would have knocked on a door and plunked down in someone’s guest chair or on the edge of a bed and sobbed my little tale of woe about missing home and feeling so fucking fed up with cancer and treatment and bad Chinese food and pollution. And these people, these incredible men and women of the 16th floor would have heard me and understood it all, and I mean really empathized, because they knew what it was like to be in my shoes. They were also fighting for their lives and doing it far from home, and they too knew the thick darkness of doubt and fear and the panic of feeling caught with no way out. And they have found their ways of making peace and rising above the pit of fear and going on every day, just as I knew I eventually would too.

I missed the potluck dinners and the ways we looked after each other, from offering to buy food at the supermarket to sharing books and pots of soup or stew when you were too tired or sick to make it yourself. I missed the silliness, like Kevin trying on his wife Gai’s new wig, or even just walking through Houjie Town with my 6’4 friend Tricia who was like a celebrity in China and such a good sport about the unabashed stares and groups of kids that followed her as though she were Yao Ming. Most of all, I missed the hours and hours of conversation, the deep heart sharing that would sometimes spin late into the night and opened so many doors for revelations and inner healing.

The thought occurred to me that I could make my last cycle at Renkang Hospital into a spiritual retreat. I could cloister myself in my room and focus intensely on spiritual healing. Maybe adversity was just part of my growth? Maybe the loneliness and fatigue and physical discomfort were just more challenges to work with and somehow transform on my path of healing. It was too late to call David or Sara in the States. I got up from my desk reflexively to go out in the hall to find someone to talk to, but remembered that nobody was there. Even my dear friend Tingting who worked as one of our translators had gone home for Chinese New Year. I paced the floor of my room, cagey, exhausted, confused.

My team of doctors needed my answer, not just about the irinotecan but about my decision to stay for a sixth cycle. And they needed to know by the next day so that I could keep to the schedule.

That night I lay in bed and asked for guidance. Like every decision I’ve had to make along the way of healing, this one too had to come from within. I closed my eyes and reached out into the night for Grandmother, a wise elder woman with deep laugh lines in the corners of her eyes and long gray braids who showed up one day during my meditation. In my vision I walked past the organic farm in Lincoln, Massachusetts, where we were CSA members, and down the tractor path toward the open field. It was winter, and the farm was asleep under rows of hay. The dirt road crunched under the soles of my boots. Grandmother waited for me at the edge of the woods, where we always met.

“I’m so confused,” I whined, wasting no time. “I don’t know what I should do.” Grandmother took me by the hand and led me deeper into the woods. In the heart of the woods was a clearing ringed by tall pines. Pine needles blanketed the floor in a soft cushion and we sat down, waiting for the others. Through the trees, emerging like spirits on the wind came eleven individuals. I don’t know who they all are, but together with Grandmother they are called the “Council of Twelve.” When we meet, we sit in a circle together. Sometimes they ask me to sit or lay in the center of the circle, depending on the healing work or lesson.

I’m going out on a limb telling you about this, but I think that’s the point. You have to be on the limb in order to leap off of it and fly. And this was precisely the focus of our meeting: what do you do when you bump up against the edges of your existence, the boundaries of your comfort zone?

While we sat in the circle on our cushion of fragrant pine I became surprisingly warm. My anxieties began to unravel and fall away, but just as I began to relax images of Toby and Leo flashed in my mind and the fear and pain and regret intensified into a deep ache that penetrated right through my heart. This was all so unfair to my children. I would do anything to get well for them so that they could grow up with a mother. I didn’t have to speak: my thoughts and feelings were silently communicated to the circle. I saw myself bald, accepting more chemo, for the kids, for the kids, I would do it for the kids. I had to be brave and strong, for the kids, for the kids.

The circle held me as I went through the feelings. Should I stay? I asked them. Or should I go to the Philippines and try this other thing? Or just go home? More chances. I wanted more chances. But where and how?

Grandmother hopped up. “Come,” she motioned for me to follow. Suddenly we stood at the mouth of a ravine. We have looked into the plunging abyss many times before. My heart always raced when she brought me to the abyss. I knew that one day I would have to let go of terra firma, the safety of my current life, and make the jump. The thought alone was enough to send electric currents of fear through my body. Sometimes Grandmother teased me. One moment she stood beside me, then in a flash she was across the deep divide. “So easy!” her hearty laughs echoed against the rocks. “You just have to see it,” she said standing next to me again. “Believe!”

I was terrified of the gorge. I used to think I was afraid of heights, but actually what really scares me is the sensation of falling, of not feeling the ground beneath my feet, feeling totally out of control.

Why did Grandmother bring me here of all places? Wasn’t I already spinning out of control with anxiety and doubt? Already in a psychic free fall? And now she was going to make me try and do her leaping trick? Didn’t she have anything else to offer me?

“You don’t have to jump,” she said cutting my tantrum off mid huff. “Just look down into the abyss. That’s all I’m asking. Just look into the unknown.”

I took a step closer to the edge, relieved that I wasn’t being tested with a more athletic challenge. Looking was less intimidating than leaping, and that I could handle. I allowed my eyes to get used to the blackness and peered down, down, down into the deep. Earth. Rocks. Roots. Reds and grays and browns. Somewhere very far below was the ground. Yes, the seemingly unending space did end.

“I have to make the right choice about treatment,” I told her with a mixture of fear and urgency. “It’s a matter of life and death.”

“Oh, that’s a good one!” Grandmother slapped her thighs and hooted, unimpressed by the gravity of my drama, but her laughter wasn’t unkind. Then she sobered up and said: “Isn’t it always?” She went to the very edge of the gorge, leaned forward at a slight angle. She shrugged her shoulders, “so what?” and fell through the air.

“I can’t tell you which treatment is right or wrong,” she said touching my face and peering at me with her brilliant blue eyes. “Any step you take leads you into the unknown, as it has all along.”

“But what about my kids? Don’t I owe it to them to suck it up and just deal with the chemo? Wouldn’t I be a bad mother if I didn’t?”

Grandmother sighed deeply and gave me a stern look. “The only thing you owe them is your authenticity.”

I looked again at the abyss and began to notice things I had missed before, like little purple flowers climbing up the side of the exposed rock and dragonflies darting from one flower to the next. The more I looked, the more life I saw. Worms turned the soil. Ants busied themselves with their purposeful labors. The unknown wasn’t so menacing after all.

That night I dreamt I had gone to the Philippines for the new photodynamic treatment with the nanoparticles I was considering. I had taken the photosensitizer and applied the laser to my pelvis searching for the hot spots that indicated cancer activity. Even better than feeling heat, I could see the blue-green sensitizer illuminated from within and swirling around. “Oh look!” I exclaimed, “I can see the light!”

Then I dreamt someone shared the pages of this blog with an agent and offered me a book contract. Another good dream.

I woke up realizing that I already knew what to do. In fact, my body had made the decision days ago, if not weeks. It was time to move on from Renkang Hospital. My treatment had taken me so far, and the day had finally come for me to pack up and go. I wasn’t leaving as I had imagined I would or like other patients who finished out a prescribed plan and then celebrated with a farewell dinner and a card we all signed. A part of me felt like I was sneaking out in a big hurry, and I hated that. How could I leave without saying goodbye in person to Dr. Wang or Tingting or to Annette and her family who were vacationing in Hong Kong at the moment?

But the grace that has surrounded me so often on this path showed up again in my last hours at Renkang. Dr. Wang recovered from a bad case of the flu and Tingting returned to the hospital with him. Dr. Wang didn’t take my decision personally or try to talk me out of leaving, as I worried he might. In fact, he gave me his blessing, telling me it was a good idea to try a different type of photodynamic therapy with a different sensitizer and laser. The other doctors showed me enormous respect and compassion, too, genuinely wishing me well. I said teary farewells to our translators Cassie and Lily. “We will miss you,” they said. Cassie and I hugged, “you’re so lovely,” she said to me with tears in her eyes. Oh those sweet, sweet women. And of course there were photos. The Chinese love their photos! Finally, a small group of nurses and several doctors accompanied me down the elevator with my many suitcases.

I had envisioned this moment countless times during my stay at the hospital. Of course I had come and gone on short trips before, but leaving for good and going home was the abiding dream. Tingting rode with me in the taxi to the hotel where we hugged and cried some more, promising to stay in touch. From there I took the GoGo Bus to Hong Kong, where I had a fabulous farewell dinner with Annette and her family. All of these goodbyes were so important to my sense of completion and closure, and I marveled again at the grace that seemed to be directing my steps on my journey through Asia. From the elevator to the Cathay Pacific flight to Cebu, the Philippines, for my 10-day photodynamic therapy treatment, each leg of the trip was one closer toward the ultimate destination: home.

Joseph Campbell says that the arc of the hero’s journey, the quest of the seeker, involves leaving home and venturing into the wilderness where the hero is challenged and experiences a type of death, physical or metaphorical, followed by a rebirth and a new way of being. Only then can the hero return home, bringing back with them their newly acquired wisdom to share.

I’m not saying that I am a hero of any kind, or that I have any enlightened wisdom to share with you. I think I am still somewhere in the wilderness, still seeking, still learning what it means to heal and therefore what it means to face death and to be alive and at home inside myself and in the world. Oh, how could I have been so obtusely blind to myself! This whole time in Asia that I have been immersed in cancer treatments I have also, and just as importantly, been unwinding the threads of my life to find that essential, perfect, shining core that exists within each and every one of us. As I prepare to go home, I realize that that’s all I’ve been trying to do since I arrived here, and on some level for a good portion of my life. My journey for healing is my quest for home.

When I look in the mirror now at my bald head, the image that peers back at me doesn’t say cancer or victim or the ravages of chemotherapy. I see warrior. I see mystic who has renounced worldly attachments. I see grit and edginess and a cool attitude. I see the shadow of new hair. I see the promise of rebirth.

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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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