Dominos Falling

When you are diagnosed with advanced cancer and the statistics are rather dramatically not in your favor, people (including those who themselves are facing advanced cancer) always tell you not to pay attention to the numbers, that you are not a number, etc., etc., etc. Those trite words seem to go hand-in-hand with platitudes like Never give up, There’s always hope, You have to be positive, and Everything happens for a reason. If you’ve read this blog for a while, then you know that I hate such inane statements of fluff, that I like to deconstruct them and determine for myself whether there’s actually any truth or pearl of wisdom within. At the beginning of this cancer journey, when faced with the sobering statistics, for my own self-preservation, I intuitively shunned the numbers too, insisting to myself and Josh that I am someone who has always defied the odds and that this would be no different, etc., etc., etc. I knew I wasn’t a number. I rebelliously wrote Numbers Mean Squat and stated that “I [chose] not to live and die by what the odds-makers say. I [chose] not to put faith in percentages that were assembled by some anonymous researcher looking at a bunch of impersonal data points. Instead, I [chose] to put faith in me, in my body, mind and spirit, in those parts of me that are already so practiced in the art of defying the odds.” And since then, I’ve portrayed Josh as the steadfast adherent to science, studies and statistics on one side and I as the staunch believer in self, faith and all that is unquantifiable on the other side. Sixteen months after my diagnosis, I have come to realize that those two sides theoretically representing two opposing perspectives on the value of statistics are not so opposite nor cut and dried, that indeed numbers do not 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.

Last year in honor of mine and Josh’s sixth wedding anniversary (the first one we had celebrated after my diagnosis), I wrote a blog post that cast a somewhat comical light on the various and mostly culturally-rooted squabbles we’ve had in our relationship – that’s what happens when you throw a Chinese American born in Vietnam together with a WASP from the South. I wrote cursorily about the kind of impact that cancer had had on our relationship, how it had made us fight more but also forgive more quickly, and ultimately love each other more deeply. Last Tuesday was our seventh wedding anniversary, and it seems only fitting that I should write another blog post to celebrate and honor our union. I wanted this post to focus principally on our longstanding disagreement over the virtues of and faults in statistics. 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. And I think we’ve even come to an evolved view about statistics where the subject is no longer a source of disagreement.

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 culture, war, politics, education and even my blindness, I’ve often marveled at how we managed to find, and fall in love with, one another. I’ve wondered what we were each doing at the various momentous and not so momentous 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 economic persecution as the Communist State 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 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 literally not yet seen a written word and had instead just emigrated to the United States, a nearly year-long journey that began one dark night as we all boarded trucks bound for the harbor where an unseaworthy fishing boat awaited its 300 passengers. On the evening my mother removed the bandages from my eyes after my first surgery and I saw for the first time a relatively unclouded world at age four, Josh must have already been fast and cozily asleep in his bed three thousand miles away from me, so obviously full of a unique intelligence and potential that was presumably 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 Josh is right, that the odds of us getting married 38 years ago were pretty close to 0%, if not 0%.

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 when we were babies were 0% as Josh and I both claim, then how did we in fact meet and get married? How can that impossible occurrence be reconciled with the numbers? Is it so simple as to say that our union is an example of how numbers mean squat, that indeed our union is proof positive of the worthlessness of statistics? I don’t think so.

If I didn’t believe in the numbers that tell me that 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 that my children will not be shot by some madman invading their school, then I would never, and I would certainly never allow my children to, leave our home. 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 to 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 effective against my disease; I wouldn’t plan birthday parties or vacations. I do all these things because despite the improbability of me 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 they 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 is 100%.

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, where 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% likelihood of survival which were the odds of survival 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, an international 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 20 times by now – the things you do for those you love…) A storm caused ice crystals to form in the plane’s pitot tubes that 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 co-pilots to take control of the plane. It just so happened that after a night of partying in Rio with his girlfriend and little sleep, the seasoned captain had chosen only moments earlier to go for his scheduled and authorized rest. The two pilots 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 any other plane crashing, events transpired over time that increased those odds. When those young co-pilots were assigned to Flight 447, the odds grew. When the captain chose to go out the night before, the odds grew more so. 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 once been 0% 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 unchartered 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 for an unlikely pair like us to meet, in order for me to beat cancer, a series of things had to happen, like the falling of a row of dominos. 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 this exploratory surgery to show no visible disease. All of those things happened. And in what is the most recent domino falling, I found out today that the washings tested negative for microscopic disease.

Of all that has gone right thus far, I’ve had very little control over anything coming to pass. 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, innate capacity to understand and process medical information, emotional stamina and, most importantly 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 dominos fall. 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. I haven’t researched what the likelihood of recurrence for me is 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 afterwards), my odds of long-term survival will increase significantly.

I remember 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 doing already (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, to make themselves feel better, to feel like they have some modicum of control 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 dominos 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 certain 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 certain off-label drugs, maintenance chemo, experimental drugs, and other non-conventional treatments will make even a small difference by incrementally improving my odds of winning this war.

Beyond this and beyond doing what I’ve always done (e.g., establishing connections and contacts, challenging my doctors, being vigilant about blood work and scans), I can do nothing else to make more dominos fall. I must accept that I have no control over the factors that will really determine whether I live or die from this disease, that whether more dominos fall is about God, faith, luck, prayer, hope or sheer randomness or some combination of all of the above. And therein lies the intersection of Josh’s science, studies and statistics and my belief in those unquantifiable forces. If we can just find that sweet spot in between those poles, I may beat this cancer yet.

Advertisements

6 Comments (+add yours?)

  1. Tyler
    Nov 04, 2014 @ 19:12:41

    Happy anniversary. I can’t believe it’s been a year plus of reading your blog. Your daughters are the reason you and Josh met. It was a joy to see them a few weeks ago. They are such deep thinkers.

    Reply

  2. Paul
    Nov 04, 2014 @ 19:29:29

    You rock!

    Reply

  3. gearhed02
    Nov 04, 2014 @ 20:32:51

    This is such a fascinating topic for me. As a sometimes statistician, I am obsessed with how my prognosis is changing over time. Stage IV survival is low, but a large proportion never make it to NED. Of the people who make it to NED, how many are clean for 6 months, a year, two years? Protocol for NED reduces scanning frequency after a year; that has to mean something. Of people who get to NED and have a recurrence, when and do they get clean again? Etc etc etc. What can be depressing is that knowing the way metastatic cancer works means that so often things that look like they should be good signs actually have no impact on prognosis changes at all. It can be deceiving and lead to false hope. I struggle with that the most: staying hopeful in the face of rationality.

    I also find this to be the most difficult thing to explain to people about cancer. It is easy to think that with cancer you either die or you live or you are fighting. But we live in this constantly changing state of uncertainty – one where things may have gotten much better for you (and on the outside things look better) but in reality, the thing we care about most, dying or not dying, may not have changed at all. So we move through the world in varying degrees of illness and wellness, sometimes with the same level of hope.

    We do not get to test for hope or even know what it should be, and so it is so hard to share with others and get to a level of empathy.

    I’m glad to hear your good news, and happy for your anniversary. As a kid from Greenville, SC who grew up a southern WASP, I particularly enjoyed this story.

    Reply

  4. Vivian
    Nov 04, 2014 @ 21:08:37

    Gorgeous gorgeous writing. And wonderful news. Take a deep sweet breath.

    Reply

  5. Kit Grady
    Nov 04, 2014 @ 21:11:00

    excellent- Happy Blessed Anniversary

    Reply

  6. jjaug17
    Nov 07, 2014 @ 12:20:11

    Happy Anniversary! I enjoyed your discussion of stats and life….

    Reply

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: