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.