In Scenario Two, I am alone, trapped behind the blinding whiteness of cataracts. We never make it out of Vietnam. I am always wearing old, faded clothes with holes my mother has patched. They hang on my thin, malnourished body. I cling to my mother because I have no white cane. I never leave the house in Tam Ky because my family is afraid that I will get run over by a car. I never go to school because no one teaches the blind in Vietnam. Scenario Two humbled me in gratitude. It was what I envisioned when I tried to overcome the anger, frustration, and self-pity. My mother never spoke of this scenario. She didn’t have to, because I know its very real possibility underlay her desperate desire to leave Vietnam, more so than even the desperate desire for economic and political freedom. “We left Vietnam because we wanted your eyes to be fixed,” she would say.
And then, five years after I encountered this palm reader, when my mother told me what she did, I imagined Scenario Three: I am dead at age two months. Scenario Three makes me hurt, sad, and humbled. It always rests within my soul. Except for when my mother revealed the truth to me, no one ever talks about this scenario, perhaps because at one point it had nearly been a foregone conclusion.
After my encounter with the palm reader, in the midst of living life, of studying and working and going on vacations, of having dinner with friends, of gossiping away on the phone with my cousins about the ordinary and extraordinary events of our lives, of working out at the gym and kayaking in the Antarctic, of falling in love and getting married, the palm reader’s words finally began to seep into my stubborn brain and heart. I know this because somewhere along the way, I stopped asking the gods my list of questions with the same old frequency. Maybe my alternate universe was really not the beautiful and perfect but wistful dream of Scenario One, the loss of which I had often mourned. Rather, perhaps it was the more probable tragic fates of Scenarios Two and Three, which I had managed to escape somehow. “Illness,” “frustration,” “unhappiness,” and “early death” the palm reader had said of my alternate universe. “Lucky” she had said of my fate up to that point. We decide for ourselves how to deal with what we have been given; it’s our choice, she had said. For so long, I had been overly concerned with figuring out the purpose and reason for the oh-so-terrible circumstances of my birth, the universe’s plan for me, and what was going to come next, so much that I had discounted the importance of free choice.
The palm reader was trying to let me know that, if I would only listen and look, my palms were telling me the story of my life, of how far I had come from where I began, a place fraught with unfortunate circumstances beyond my control, but where and how far I had traveled in my life, while somewhat determined by historic and familial forces also beyond my control, was largely determined by me. The future would not seem so overwhelming with its infinite possibilities if I looked at my palms for the story of my past, to find comfort in the good choices made and the hard lessons learned. Could it be that after years of unsuccessfully looking without and to the invisible Beings of the heavens for the answers to my questions, I could actually find them by looking down at my own palms, within myself, and to my own past?
Little did I then know of the further choices I would have to make, and of the even harder lessons I would learn.
20
Numbers, a Reassessment
Somewhere, the outcome of all of this is known—everything from the largest to the smallest, including our little lives. Numbers are just the way we try to calculate the future.
At the beginning of this cancer detour, when faced with the sobering statistics, for my own self-preservation I intuitively shunned the numbers, insisting to myself and Josh as well that I am someone who has always defied the odds and that this would be no different. I knew I wasn’t a number.
Since then, I’ve portrayed Josh as the steadfast adherent to science, studies, and statistics on one side and me as the staunch believer in self, faith, and all that is unquantifiable on the other. As another autumn comes on and I am still alive, sixteen months after my diagnosis, I have come to realize that those two sides, theoretically representing two opposing perspectives, are not so opposite or cut and dried, that indeed numbers don’t just mean squat, that they are informative and valuable. But they must be understood within a nuanced context that overly simplistic statements like “You are not a number” don’t even begin to capture.
A Tuesday in October 2014 was our seventh wedding anniversary, and it seems only fitting that I should write something to honor our marriage. I am happy to report that the state of our union is strong and good, that we fight less, communicate better, and if possible love each other more than we did a year ago, and certainly about a thousand times more than we did the day we married. It might sound like a funny subject for a love note, but I wanted to mark this anniversary by resolving our longstanding disagreement over the virtues and faults of statistics.
The night before my diagnostic laparoscopy, as I agonized over what tomorrow would bring and my future, remembering as always the stated odds of me beating Stage IV colon cancer, and with the thought of our wedding anniversary still at the forefront of my mind, I asked Josh, “What were the odds of us getting married when we were born?”
He posited, “Zero.”
Because Josh and I come from such different worlds, separated not just by physical distance, but also by culture, war, politics, education, and even my blindness, I’ve often marveled at how we managed to find one another and fall in love. I’ve wondered what we were each doing at the various defining moments of our respective lives apart.
While he was born into the relative comfort and luxury of Greenville, South Carolina, into an insular and genteel world of southern charm and propriety, my ten-month-old self was living on the other side of the earth in a subtropical world of monsoons and rice paddies, in the throes of extreme poverty and ethnic and economic persecution as the Communists sought retribution against those who had defied them during the war. Government thugs were on the brink of occupying my family’s home and confiscating all our personal property to contribute to the collective that stood at the core of the socialist ideal. While Josh’s grandmother was bragging about her three-year-old grandson’s uncanny ability to read at such a young age, I had not yet seen a written word and had instead just immigrated to the United States, a nearly yearlong journey that began one dark night as we all boarded trucks bound for the harbor where an unseaworthy fishing boat awaited its three hundred passengers.
On the evening my mother removed the bandages from my eyes after my first surgery and at age four I saw for the first time a relatively unclouded world, Josh must have already been fast and cozily asleep in his bed three thousand miles away, so obviously full of a unique intelligence and potential that was presumed to be completely lacking in me. While I skipped a day of school to celebrate Chinese New Year in January or February of each year, to collect red envelopes filled with money, listen to firecrackers go pop pop pop at least three hundred times, and make our annual trip to a Buddhist temple to pray, Josh had a normal day at his parochial school, where I assume he went to chapel and then moved quickly through the material that had been assigned for that day, much more quickly than how I progressed at my poorly ranked public school in Los Angeles. While he ate turkey on Thanksgiving and opened presents on Christmas Day, I watched TV or read a book or played with my cousins, like it was any other day we had off from school. When I ponder the disparate worlds from which Josh and I hailed, I do believe he is right, that the odds thirty-eight years ago of us ever getting married were pretty close to 0 percent, if not actually 0 percent.
But yet, we did meet and marry. In this chaotic universe of so many people and innumerable paths crossing randomly for brief moments of time, our life threads touched and fused together. If the odds of us meeting and getting married were 0 percent when we were babies, as Josh and I both believe, then how did we in fact meet and get married? How can that impossible oc
currence be reconciled with the numbers? Is it as simple as that our union is an example of how numbers mean squat, that indeed our union is proof positive of the worthlessness of statistics? If I ever thought that to be true, I don’t anymore.
If I didn’t believe in the numbers that tell me I will likely not die when I walk out the door or board a plane, if I didn’t believe in the numbers that tell me my children will likely not be shot by some madman invading their school, then I would never leave our home, and would certainly never let my children leave, either. We go to bed every night expecting the sun to rise in the morning because based on the rules of probability, this is what will happen. We save for our children’s college educations and our own retirements because based on the odds, we expect our children to grow up healthy and go to college, and yes, we expect ourselves to age and enjoy retirement. Everything we do in our lives, we do based on the likelihood of something happening; it’s called planning.
While those of us who have advanced cancer would like to ignore the statistics that pertain to whether we will live or die from our disease and to say that numbers mean squat, it would be hypocritical to do so, because even as we live with our disease, we must in fact continue to live, and with living comes the need to plan. I must still believe in the numbers; otherwise, I wouldn’t—couldn’t—do anything; I wouldn’t cross the street; I wouldn’t agree to undergo exhausting treatments that statistically have proven to be at least somewhat effective; I wouldn’t plan birthday parties or vacations. I do all these things because despite the improbability of my getting sick in the first place, I still expect the earth to rotate, the universe to operate based on certain rules, and the outcomes that the statistics predict to actually happen. I cannot pick and choose which numbers to live by because I don’t like the predicted outcome.
But odds are not prophecy, and what is expected to happen sometimes doesn’t happen. Plans fall apart. Children grow up and show no interest in college despite their parents’ best efforts. Adults die, leaving their retirement funds untapped. Madmen invade schools and slaughter the innocent. People with Stage I cancer years later experience a recurrence and die from metastatic cancer, even though the odds were heavily in their favor at diagnosis, and people with Stage IV cancer somehow live far longer than anyone would have expected. And maybe someday the earth will be struck by a giant asteroid that will obliterate all life as we know it. And when those unlikely events happen, the probability of their occurrence becomes 100 percent.
Josh has a not-quite-immobilizing fear of flying. Even so, he has a morbid fascination with air disasters, and so he (and therefore I) have watched endless hours of air disaster shows on National Geographic and the Smithsonian Channel, shows with C-class actors reenacting the last harrowing minutes of a commercial airliner’s flight before it crashes into the side of a mountain, a quiet neighborhood, or the ocean, and the investigative efforts to uncover what went wrong. Sometimes there are happy endings, in which by some miracle the pilots manage to save passengers and crew. But that rarely happens.
Everyone knows that flying is statistically significantly safer than driving, that given the number of people who fly around the world and the few accidents there are, flying is the safest form of travel. Of course, as Josh and I watch an episode, we both are thinking that my odds of beating Stage IV colon cancer are much better than the odds of those people on that flight living more than two minutes; anything is better than a 0 percent likelihood of survival, the odds for those doomed people. I’ve asked Josh why, if he’s afraid of flying, he likes to watch these shows. He tells me because they perversely make him feel better, reinforcing to him how many things must happen for an air disaster to occur, that in essence it’s the coalescing of a multitude of random and unlikely occurrences—the perfect storm.
Josh’s current obsession is with Air France Flight 447, a flight from Rio to Paris that crashed in the Atlantic Ocean in June 2009, killing all 228 people onboard. (He has forced me to watch the episode at least twenty times by now—the things you do for those you love…) A storm caused ice crystals to form in the plane’s pitot tubes, which in turn caused a temporary and what would ordinarily be a minor inconsistency and malfunction in the plane’s airspeed measurements, which in turn caused the autopilot to disconnect, which in turn forced two young and inexperienced copilots to take control of the plane. It just so happened that after a night of partying in Rio with his girlfriend and on little sleep, the seasoned captain had chosen only moments earlier to go for his scheduled and authorized nap. The two copilots panicked in response to the erroneous readings of slowed airspeed, instinctively pushing the airplane’s nose up (which is the opposite of what should be done), causing an actual and sustained decrease in airspeed and then an engine stall.
While the odds of that plane crashing were at some point as insignificant as those of any other plane crashing, events transpired that increased those odds. When those young copilots were assigned to Flight 447, the odds grew. When the captain chose to go out the night before, the odds grew even more. When weather patterns changed and forced the airplane to fly through a storm, the odds grew to an insurmountable level.
Similarly, while the odds of Josh and me meeting might have been 0 percent at the moment of his birth, they changed over time. They increased when Vietnam revised its policy to permit those of ethnic Chinese ancestry to leave the country. They increased again when I made it to the refugee camps in Hong Kong. They increased dramatically when I set foot on American soil, and then again when I gained sight. They continued to increase as I chose to excel academically, as I ventured into uncharted territory by heading to the Northeast for college, as I stayed in New York after law school, as I chose to start my legal career at Cleary Gottlieb. They increased when Josh chose to be a tax lawyer, to do what very few from his community did and come to New York to practice the most exciting and challenging type of tax law, when he chose to accept a job offer at Cleary Gottlieb.
Numbers are not static. They are constantly changing, going up or down by degrees. Everyone agrees that with the outcome of my exploratory surgery, my odds of survival have increased. By how much? It’s impossible to say. Josh has always told me that, much like the coming together of various random forces to cause an unlikely plane crash to occur or an unlikely pair like us to meet, in order for me to beat cancer, a series of things have to happen, like the falling of a row of dominoes.
Dr. D.L. agrees with Josh’s view. Josh has told me from the beginning, “We need certain things to go our way.” I needed to respond well to chemotherapy. I needed my CEA to be a reliable marker so as to warn me and my medical team about probable undetectable disease. I needed to have access to the best HIPEC surgeon possible. I needed to make some good decisions about if and when to undergo HIPEC and exploratory surgery. The disease in my peritoneum needed to respond to HIPEC. I needed an exploratory surgery to show no visible disease. All of those things happened. And then I had to find out that the “washings” tested negative for microscopic disease.
Of all that has gone right thus far, I’ve had very little control over anything. In general, beating cancer is about facts, circumstances, and occurrences that are uncontrollable (i.e., the extent of disease at diagnosis, access to health insurance and financial resources, capacity to understand and process medical information, emotional stamina, and most important of all, how a cancer’s unique biology responds or doesn’t respond to treatment).
Now the key is finding a way to make more dominoes fall, and the right way. But how do I do this when I have so little control? That is the question with which I am currently obsessed. I haven’t spent much time basking in the joy of a clean surgery. I’m already thinking about the next move, trying to figure out what I can do to hold back this disease. Because in looking at the situation clearly, looking at those often-dynamic numbers, you realize that metastatic disease abides, and is resourceful. I haven’t researched the likelihood of re
currence for me, but whatever it is, it’s quite high, as it is for anyone with Stage IV disease. Dr. D.L. told Josh on Friday that the next three years are the critical period, that if I can hold back the disease during that time frame (even if I were to have a recurrence at some point afterward), my odds of long-term survival will increase significantly.
After I was first diagnosed, I asked my colorectal surgeon in a fit of desperation what I could do differently in terms of my personal choices to beat this disease, like exercising more than I had been (which was already a lot) or changing my diet, or taking supplements. He told me that when something like a cancer diagnosis happens, people try to find ways to control the disease in a world that seems to have gone crazy, but that anything a person could do would make very little difference.
In part, the answer to how I can make more dominoes fall is to rededicate myself to evaluating those things that might make a difference, however little. Since I have no control over the factors that will have a dramatic impact on my odds, then I will work at the margins on the theory that certain personal choices might lead to the critical tipping point. However, I am unwilling to subject myself to some life changes or financial expenditures without sufficient medical evidence. I intend to bury myself in research and studies in much the same way I once buried myself in school and legal work to determine for myself, notwithstanding the inconclusive evidence, whether a low-carb diet, cannabis oil, veganism, supplements, herbs, use of particular off-label drugs, maintenance chemo, experimental drugs, and other nonconventional treatments will make even a small difference by incrementally improving my odds of winning this war.
The Unwinding of the Miracle Page 14
