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September 24 - October 3, 2023
While cancer has the capacity to tarnish my happy moments with my children, to taint them with doubts about the future, cancer also has an incredible ability to strip away the ugliness and the things that don’t matter and to put everything in a perspective as bracingly clear as that Antarctic sky.
More irrationally, I’ve been emboldened by Siddhartha Mukherjee’s The Emperor of All Maladies, a beautiful and brilliant work that chronicles the history of cancer and the work of daring doctors and researchers and their patients who heroically—many said stupidly at the time—risked their professional careers and lives to develop revolutionary drugs to fight off this scourge that has plagued the human race since our beginning.
An interesting quirk of having a disease is that most of your friends from diagnosis on also have the same disease. Which means that pretty soon, your friends start to die.
And then, two months later, he was dead. It took me two months just to begin processing the fact that I had cancer. He didn’t even have a chance to put up a fight.
In so doing, she is demystifying the process of dying, helping all of us who will also one day die be less afraid.
In many respects, it’s an appropriate and useful metaphor because it lends a visual image to an often long and arduous process with an uncertain outcome in which the mind and body are brutalized; it fires up passion and gets the adrenaline flowing and can push one to keep enduring. But what happens when the body can no longer tolerate further treatment? What happens when death is the outcome of the war and not life?
of empty symbolic gesture of “fuck you.” Similarly, there comes a time when one must recognize the futility of continuing the personal physical fight against cancer, when chemo is no longer a desirable option, when one should begin the process of saying goodbye and understand that death is not the enemy, but merely the next part of life. Determining that time is a deliberation that each of us must make with her own heart and soul.
These are the times in life when we feel almost more than we are capable of feeling. These are the moments when—paradoxically, as we are closest to death—we are most painfully and vividly alive.
It felt so comfortable and yet poignant; how sad that it took something like my last session of chemotherapy for advanced colon cancer to bring us together again without boyfriends and husbands and children, in a way we hadn’t been in more than twenty years.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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
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 hard things for him are the memories of our life before cancer, especially now, as we near the one-year anniversary of the diagnosis. The NBA playoffs this year trigger thoughts of last year’s playoffs and how we were so utterly and stupidly clueless then. My return to cooking reminds him of what he calls our “Halcyon days,” those innocent days before cancer, when our lives were carefree and happy. But as for me, what’s hardest of all for him is operating under the strain of trying to be normal.
As the tragic hero of my own play, I will be brought down by my fatal flaw, my hubris, which would have me believe that I am young and strong (with my five-times-a-week workout schedule) and that I am immune from cancer. But as a member of the audience, I know what’s coming, and I want to scream at my alter ego, warn her so that her fate might be something other than what it already is.
In my elusive moments of faith, when I am alone and still and no one asks me to verbalize or justify that faith, I know with a certainty that I could never explain that the hand of God has touched my life.
He told me how he would never have thought when we got married nearly six years earlier that he would be so happy to hear me pooping not five feet away from him. I had to laugh.
With the return of bowel function and the accompanying sense of normalcy, it was hard to imagine that there was a raging, murderous tumor inside me. But there was. That morning, without the official biopsy results from the colonoscopy back yet, Dr. D.C. came to tell us that my CEA was 53, whereas a normal CEA is less than 5. If there had been any part of us that had hoped I did not have cancer, that hope was completely erased by this news.
Indeed, in addition to coming to terms with my own emotions, part of the acceptance process was absorbing and addressing the reactions of family and friends around me, sometimes allowing, but more often deflecting, their incredulity, horror, fears, sorrows, and hopes, sometimes permitting them to be my strength and comfort, and sometimes being theirs.
To be fair to Josh, though, I think my illness is much harder on him than it is on me, because he is the one who faces the prospect of going on without me to raise our children and pick up the pieces as I go forth into my next adventure beyond this life. It’s always harder for the one left behind.
tried to find the words to express my gratitude. How do you say thank you to the person who has seen your insides and saved your life? Is it even possible?
Sadly, it’s the type of love that is shown only when life is threatened, when for a few minutes, hours, days, or weeks, everyone agrees on and understands what really matters. And yet, as transient as that love can be, its magic, intensity, and power can sustain the most cynical among us, as long as we allow ourselves to linger in the glow of its memory.
but the story of how cancer came into my life reminds me every day that while it has taken from me the innocence and happiness of my old life, it has also given me the gift of human love, which has now become part of my soul and which I will take with me forever.
Why did I live when I could have so easily died?
How can suffering and death be matters of sheer bad luck? No, there must be a point to it
In that idyllic college town in the mountains of western Massachusetts—where a Congregational church housed in a two-hundred-year-old white colonial building and an Episcopal church housed in an even older Gothic edifice sat in the middle of campus against the spectacular reds, oranges, and yellows of my first fall foliage and then the blinding white of my first New England snow—I felt a little out of place. There was not one pair of chopsticks or a single Buddha statue to be found, except, in the case of the Buddha statue, maybe buried in a photo in one of the books stored in the East Asian
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In the beginning, there are many things that we have no control over—where we are born, who our parents are, how we come into this world with something wrong with our eyes or maybe our ears or our legs, whatever it is—but from there it’s up to us to decide what we do with what we’ve been given. We make our own choices.”
“We left Vietnam because we wanted your eyes to be fixed,” she would say.
“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 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.
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.
Everything we do in our lives, we do based on the likelihood of something happening; it’s called planning.
But odds are not prophecy, and what is expected to happen sometimes doesn’t happen. Plans
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.
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.
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.
Beyond this, I can do nothing to make more dominoes 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 dominoes fall is about God, faith, luck, prayer, hope, sheer randomness, or some combination 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 find the sweet spot in between those poles, I may beat this cancer yet. Happy anniversary, darling.
a million times. I have learned throughout this cancer journey that when the options aren’t so appealing, you have to go out there and make new options. As much as I acknowledge how little control I have in my life, I do try to control what I can. Then I can let everything else go and let the universe do what it will.
If these are indeed cancer, then I am no longer curable, and my prognosis is, assuming I respond to chemo, “several years.” That is the long and short of it.
My sister told me she felt like we were back at square one. No, I told her, it’s worse than square one, because now it’s in my lungs and I’ve already tried chemo regimens that haven’t seemed to be that effective. In addition to having already tried the two leading chemotherapy treatments for colorectal cancer, I am tired now, so tired of fighting, so tired of having any kind of hope and being painfully disappointed. I am so tired.
The sense that we ever had control over any of this seems nothing but a mockery now, a cruel illusion. And also, a lesson: we control nothing. Well, that’s not exactly true. We control how good we are to people. We control how honest we are with ourselves and others. We control the effort we have put into living. We control how we respond to impossible news. And when the time comes, we control the terms of our surrender.
What kind of war is this in which the lethal enemy won’t show itself? Cancer fights dirty.
In part because if this writing were to become the principal means by which my children would come to know my innermost thoughts and feelings after my death, I wanted them to see my real self, a self that, in addition to experiencing many moments of joy, gratitude, and insight, was often tormented by fear, anger, hurt, despair, and darkness. I also made that promise because I disliked tremendously those bloggers who always presented in the face of a life-threatening illness images of pumped fists and unending positivity and determination.
