Leavings and BeginningsFebruary 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.