Cousin N and Joel had orchestrated the whole thing. Joel and his company sell time on the digital billboards in Times Square. N told him what was happening with me, and he was apparently so moved that he insisted on doing something special. I can only imagine how much advertising revenue Joel’s company sacrificed in order to put up an ad about a cancer patient on her last day of chemo. I wrapped my arms around him, and much to my surprise, I wept uncontrollably into his wool coat.
You see, I am not so old that I have forgotten the deeply rooted feelings of being unwanted, and so I still don’t know what to do with kindness. This gesture from my cousin and her friend was moving enough, but the fact that it was a visual gesture, and on such a grand scale, well, that made my knees buckle.
My mother had my siblings go to Chinese school to learn Mandarin Chinese after regular school, but never me. You won’t be able to read the Chinese characters, she told me. Fifth Uncle took my siblings and cousins to see Star Wars: Return of the Jedi in the theater, but not me. “Why don’t I get to go?” I asked my sister. Because you might not be able to see the screen, she said. (Translation: no one wants to waste money on you.) Once when I was nine, Cousins N and C and my sister all got to go to San Francisco to visit Fourth Uncle and I didn’t get to go. Why? I asked my mother. Because you can’t see like everyone else, and no one will take care of you was her response. From a young age, I felt marginalized; I felt defective because I was told through actions and words that I was defective.
So I spent many years proving that I could see well enough to go to the movies, to travel the world on my own, to study Chinese (I lived in China during my junior year in college, and became fluent). I did it all for many reasons, but mostly it was to prove my own worth to myself and my family. I felt as if I had to prove myself into existence every day, because my existence was a proposition that had early on been very much in doubt. At some point, when I had accomplished all that I had dreamed of accomplishing and indeed gotten married and had children and done those things that everyone once said I wouldn’t be able to do, I began to feel self-worth and love from within as well as from without. But to a large degree, I could never let go of those feelings of being unwanted and unloved, so ingrained had they been in me from such a tender age.
I’m pretty sure that feelings of insecurity are nearly universal. I see the insecurity already in my children, even though they have had the benefit of nurturing teachers and (I’d like to think) nurturing parents. I’m always amazed at how the beautiful and intelligent never feel quite beautiful or intelligent enough, how people constantly agonize over not being thin enough or charming enough. And all of these things matter—beauty, intelligence, weight, and hundreds of other criteria by which people judge themselves—because these are the characteristics people select to determine whether they’re indeed desirable and lovable.
Ultimately, we all have a constant need to be accepted and loved in this world, to feel connected to the communities represented by networks of family, friends, colleagues, church, and the other groups that surround us. To belong, to matter to someone, to feel comfort. It’s almost as if the fear of being unloved is part of our genetic makeup, or maybe it is deeper even than that, and is endemic to being born human on a tiny rock floating through infinity. That realization is enough to make even the least self-aware person a little insecure about what it all means, and what our role in this passion play might be. Ironically and rather unexpectedly, cancer has proven to be most effective in chasing away my insecurities, allowing me to shed almost completely those old and painful feelings of unlovability.
How funny that one of the two greatest challenges of my life—my visual disability—should make me feel so unloved, and that the other greatest challenge of my life—this cancer—should rectify that, resoundingly.
I am humbled. That unwanted and unworthy little girl is truly baffled by all these acts of love.
14
Hope
In March, on the eve of my HIPEC surgery, I wanted to write about hope. It’s a word that is bandied about so frequently when you have cancer. “You cannot give up hope,” Josh has told me many times. “There’s always hope,” more than one cancer survivor has told me. People have recommended to me a book (which I’ve read) called The Anatomy of Hope, one oncologist’s account of how important it is to maintain a realistic hope, sprinkled with tales of patients defeating cancer against all odds. This fuzzy concept of hope, this feeling that something desirable can be attained, is so prevalent in the world of cancer that it takes on a holy quality that people embrace purely on the basis of faith: like, if you have it, it will sustain you through your darkest hours, and maybe even cure you. Because the word is invoked so often, hope can also feel like a lie. After all, how can you say there is always hope when clearly at some point death is imminent—where is the hope then?
It is to my mother’s stories of life in Vietnam and our escape that I’ve turned often in the last eight months as I’ve examined the value of hope. Her stories reveal the mercurial nature of hope; it is like a fire in our souls, sometimes flickering weakly, like the flame of a single candle in the night, and sometimes raging mightily, casting a warm and brilliant light of limitless possibilities.
My thirty-year-old mother was one of the many who had lived through years of civil war and one of the many who watched with envy as the few Vietnamese who had ties to the Americans, or guts, or luck, or money, or some combination of these things managed to flee the country. Riding behind my father on his moped through the busy streets of Saigon in the final days of the South, my mother witnessed firsthand how truly lucky some were.
One of her most vivid memories was this tableau: an American soldier pulling on the arm of a pretty Vietnamese girl, clearly urging her to come with him; an older woman who no doubt was the girl’s mother pulling on her other arm, obviously begging her to stay. It was a tug-of-war that symbolized the opposing forces of America and Vietnam, old and new, brightness and darkness, success and failure, even life and death. Finally tiring of the game, the soldier with his easy strength picked up both women in his arms, dumped them in his jeep, and drove off into the evening sun.
My mother longed to go after them, to inhabit the glamorous and rich world of Marilyn Monroe and Jackie Kennedy that she’d glimpsed in the occasional American movie. More important, she wanted to leave Vietnam in order to find better medical care for my older sister, whose vision was also impaired. How to do it exactly, she had no idea. Escape, much less escape to America, was a dream, a fantasy, a hope so impossible that my mother pushed it away to the recesses of her mind, and instead focused on surviving under the new regime. Yet, dim as it was, the hope of a different and better life was born in my mother on the day the soldier tossed those women into his car, you’re-coming-with-me style.
Obviously, my mother’s far-fetched hope came to pass. The poverty became so extreme that hundreds of thousands were prepared to risk their lives at sea, fleeing in the dead of night. As more and more people escaped, and letters and pictures arrived from France, Australia, and America proving that a new life was indeed possible, my mother’s impatience with her circumstances grew and grew and grew. But unsanctioned escape was almost exclusively for the single and young, who had easy mobility, who could move about in the dark of night in order to snag the one or two spots left on a fishing boat leaving on the spur of a moment. Despite my mother’s building hope, there was still no way to manage the evacuation of an entire family that included my seventy-nine-year-old great-grandmother. Ultimately, geopolitical forces played out in our favor as cooling relations between Vietnam and China caused the new Vietnamese government to “invite” all ethnic Chinese to leave—a mild form of ethnic cleansing—subject of course to adequate payments in gold and the transfer of all property to the state. So in February 1979, my family—at least fifty people—boarded different fishing boats, bound for Hong Kong and Macau.
The rickety fishing boat I was in measured roughly fifty-four by twelve feet and carried three hundred people packed against one another. The journey to Hong Kong lasted a month and included eleven days on the open seas with little food and water. We were lucky because our boat did not sink, as so many others did. We were lucky because we were not forced to engage in cannibalism, as some refugees were. Less than a year after we arrived in Hong Kong, the United States Catholic Church sponsored my immediate family’s emigration to the United States, providing the funds for our Pan Am flight from Hong Kong to San Francisco. On November 30, 1979, my mother’s long-standing hopes were realized when we set foot on American soil. I was three years old.
I once asked my mother whether she was afraid when she sat on that precarious fishing boat, at the mercy of the sea gods and countless other gods who controlled her and her family’s destiny. I wondered as she sat there for days on end, looking out on the vast expanse of ocean, what she envisioned in her heart and mind, what she hoped for in those moments of absolute terror when she and everyone else were violently seasick, when she and her children were hungry and had no idea when refuge would be found. Did she dream of Jackie Kennedy? Did she have images of American streets paved with gold? Did the hope embodied in such images keep her going through the darkest moments of her journey?
“I wasn’t afraid because I had no expectations at that point,” she said. “I didn’t really think. When I thought about the future, whether it was the next day, the next month, or the next year, it was just blank whiteness. There was nothing beyond that moment, that second even.” In order to get through the ordeal, my mother essentially banned hope from her consciousness so she wouldn’t be incapacitated by fear. She stopped thinking and moved instinctively, living one second at a time. I think that’s what people call survival mode.
In this war against cancer, I, too, have found the need to go into survival mode, to envision a future of blank whiteness. Each time my heart is broken in this war, out of a primal sense of self-preservation, I vow that I will never allow myself to feel that kind of debilitating disappointment, devastation, and pain again. I can’t bear it, I tell myself. It is in the darkest moments with cancer and as I recover from the latest defeat that I say “Fuck hope” and forbid my mind and heart from creating happy visions of a distant future that is entirely unlikely. I’m afraid to hope. And so in those moments, I don’t cling to hope to sustain me as so many say I should. Rather, I reject it.
Hope is a funny thing, though. It seems to have a life and will of its own; it is irrepressible, its very existence inextricably tied to our spirit, its flame, no matter how weak, not extinguishable. After disappointing CEA results, and after a weekend of feeling like it was futile to fight this war, I came to grips with the latest setback and started being able to see beyond that day and that week and then that month. Soon, I decided that I realistically had eight good years left, that I could see eight years out when my children will be ten and twelve, and that I was going to focus on compressing a lot of living into those eight years and whatever I got on top of that would just be sweet icing.
But no more dreaming of retiring with Josh; no more imagining holding grandchildren in my arms. From now on, it was about establishing a concrete, specific, and entirely achievable goal, and if I made it to that goal, then I would think about the next attainable goal.
I would parry hope, and defy it to toy with me again.
Josh and others thought I was overreacting, prematurely giving up hope because of one CEA result. In truth, it was my coping mechanism. I needed to toughen up; I needed to change my expectations if I was going to get through the inevitable future setbacks; otherwise, I would be destroyed emotionally.
This was me—turning to face the killing force inside me. I wanted to see it clearly. My life has been far too stark and difficult to let myself slip into denial now. Denial is first cousin to hope. But all good things—the beautiful, impossible life Josh and I have created, for instance—came to be only by facing hard truths consciously. Such realism had served me well, and as enticing as magical thinking can be, now was not the time to give in to its seductions.
Then we went to see Dr. D.L., the HIPEC surgeon, and Josh asked a question that I would have never been able to bring myself to ask: Could HIPEC be a cure?
And, with those words spoken, I could feel the flame of hope grow a little brighter inside me, in spite of the vow I had made to myself. And since then, sometimes thoughts and dreams of a life beyond the eight-year mark have crept into my head, unbidden. People tell me they know that HIPEC will cure me, that I will be one of the lucky ones. I don’t want to believe them because I can’t bear the thought of more heartbreak, but a tiny part of me hopes they are right.
Until cancer happened to me, I never understood the vicissitudes of hope; I never understood the joy, terror, and despair it could bring; nor did I understand its incredible resilience. The best analogy I can come up with for those who have yet to live with cancer is the undying search for an enduring and romantic love, something that is nearly universal to the human experience. Before Josh, there were a few guys in my life. But there were one or two who truly broke my heart, creating the kind of ugly blubbering and depression that embarrasses me now when I think of it.
Nothing hurts quite as much as young love, when it seemed like my entire sense of self-worth was tied to these guys who so brutally rejected me, leaving me feeling utterly unlovable. Each time, I swore that I was done with men, that I didn’t want to put my heart at risk again, that I didn’t need a man to make me happy. And each time, time would make me forget the pain. Time and experience taught me new strength and courage, giving me the fortitude or the foolishness to put my heart at risk again and again—until I finally met Josh.
I think I will always oscillate between embracing and rejecting hope. I think I will always live somewhere in between today and eight years and forty years from now. But what I do know about hope is that it is an everlasting and indelible part of my spirit; it is there even when I feel hopeless, a perpetual flame. I have felt its faint warmth even in my darkest moments, even as I’ve sought to squash it. I know the flame, however weak or strong, will burn so long as I live. And near the end of my days, when it is clear that more life is not possible, my hope will evolve into something else, into hope for my children, hope for the human race, hope for my soul.
15
I Am Lost
I can really cook.
In late spring of 2014, I took to posting pictures of my culinary achievements on Facebook—short rib lasagna rolls, chicken pot pie, turkey soup with kale and loads of other vegetables. Those photos symbolize an ostensible return to “normalcy,” for, before cancer, I loved to cook and had a little problem with buying too much kitchen stuff. Some people have an addiction to acquiring clothes and shoes; I had an addiction to buying high-end cookware, kitchen gadgets, and cookbooks. The best Christmas presents Josh ever got me were my 7.25-quart Le Creuset Dutch oven and a ninety-five-dollar instant digital thermometer. For months after my diagnosis, I stopped cooking. The neuropathy from the first chemo regimen made cooking annoying and even painful. But more critically, I had lost all pleasure in food, convinced against all rationality that everything I ate would make the cancer grow. Ironically, during my most recent hospital stay, when I was denied all food for four and a half days so my bowels could rest to clear the small bowel obstruction, I obsessively watched PBS cooking shows on my iPad and drooled over David Chang’s fancy ramen noodles as I lay in bed weak from hunger. I vowed then that I would never shun food again.
I also posted on Facebook a photo of our new car, a small SUV, another stab at normalcy. It’s a considerable expense for something that we will use only two or three times a month, but we decided that it was a necessary part of moving forward with our lives, so that we could go hiking, pick apples in the fall, and explore cute towns on the weekends.
But beh
ind those photos and the rush of activity, behind the smiles and my seemingly upbeat statements to everyone about how I was so glad not to be in the hospital, to be walking upright and to not be in pain, behind the pose, I was broken emotionally, more broken than I can remember ever being. Oftentimes, choosing fabric, researching cars, cooking a new recipe, all these ostensibly life-affirming acts felt like me clinging to a piece of wood in the vast ocean, acts of grave desperation that would only put off for a time the unavoidable truth and great inevitability, the truth being that I have cancer and the inevitability being that I will eventually die from that cancer.
I took my girls to two birthday parties one balmy weekend in May. The first was for one of Belle’s friends from school. None of the parents in Belle’s class know about my diagnosis. So when I stood there making nice with the birthday girl’s mother, a tall, beautiful woman living in a beautiful glass building on the edge of Prospect Park, everything made more beautiful by the glorious blue of the spring day, I wanted to scream at her, “I have fucking Stage IV colon cancer! Do you have any fucking clue?” The second was a joint birthday party for three of Mia’s classmates held at the carousel in Brooklyn Bridge Park with spectacular views of the towering skyscrapers in lower Manhattan as the backdrop. The parents in Mia’s class know about my diagnosis, so I was left to answer awkward questions about how I’m doing from people who may or may not care, so happily ensconced are they in the unblemished perfection of their own lives, or, if they do care, are afraid to pry. “Oh, fine. Just hanging in there,” I say vaguely. I want to scream at all of them, too: “This is so fucking unfair! I didn’t deserve this. My children didn’t deserve this!” But I keep these and millions of other bitter, angry, and unkind thoughts to myself. I don’t break social decorum, and I keep my fake smile firmly plastered on my face.
The Unwinding of the Miracle Page 9
