There was the popular blogger who wrote of being excited when she was diagnosed because cancer presented another challenge in her young life and she loved challenges. I felt no excitement when I was diagnosed, and if this woman really had, it was all part of a lie she was telling herself to avoid what was happening in her own body. Another popular blogger only a few short weeks from dying couldn’t seem to recognize or accept the telltale signs—the weight loss, the liver invaded by tumors, the five brain metastases. He was a clinician, a cancer researcher, which made the denial and delusion that much more astounding. The brain tumors were being treated with radiation. Subsequently, as he reported on his blog, he fell over from a loss of balance, which he attributed to inflammation caused by the radiation. He expected the inflammation to subside, and then he would be able to return to systemic treatment. I read and looked at photos he had posted on social media a month earlier, and I knew that there would be no return to systemic treatment. The end was near for him.
Those of us familiar with the cancer world, who have witnessed enough of our friends die, recognized how close he was. He seemed not to be able to see this and perpetuated the delusion to himself as well as to his more naïve blog readers. I was and am disgusted by the lies. Perhaps for many, lying is the only way to get through the day and face death, but I knew that I wasn’t one of those people. I wanted to face my death with honesty, with eyes wide open, with understanding and courage even amid the fear, and, I hoped, with some newly gained wisdom. And so I started writing in search of my truth, to gain that understanding and wisdom of what it means to live and die, of what it is to live fully and unwind our individual miracles consciously. I discovered so many others who were secretly looking for their truths, who wanted to explore with me not just the darkness, fear, and tragedy, but also the joy and beauty of living and dying.
The beginning of the miracle of life, the development of the fetus in the womb and then its entry into the world, is associated with wonder and beauty. How unfortunate it is that we all lack the cognition to appreciate that beauty that is the creation of our individual miracle of life. I would have loved to witness my own creation and birth. Now I’m left with witnessing my own death; I have the cognition for that, and as horrible as this disease has become, I hope that I will have the cognition for that, that the complex workings of my brain will be the last functions to shut down. It is hard to find any beauty in dying, any poetic ending to the miracle of my life.
Seven months ago, I failed the second clinical trial in which I had participated and the third experimental treatment overall. It was particularly devastating because the trial had for a couple months showed dramatic efficacy—and then it didn’t. The scans revealed doubling and even tripling of certain abdominal and pelvic tumors, a clear portent of obstructions and blockages and eventual death by starvation, unless my lungs or liver failed first from their tumor burdens. I was sure I would be dead within several months. That was the prognosis my oncologist gave me after a five-minute disclaimer. One small part of me was relieved to have the torture end, to finally embark on the next adventure. But mostly I spent the time during what would be my last summer—the summer of 2017—grieving intensely, crying every day for two weeks, realizing again for the umpteenth time with a renewed, intense sadness all the big and small moments I would miss in my daughters’ lives—the graduations and weddings and music recitals and fights with friends—as well as all the shattered dreams that my husband and I had once nurtured—a vacation home in Tuscany upon retirement, more travel around the world. You would have thought that I’d never grieved for any of this in the preceding four years.
But there was something new that I did truly mourn for the first time, as I felt my body’s unprecedented deterioration as it struggled to continue to operate after four years of surgeries, chemotherapy, radiation, and other experimental treatments, and the undeniable fact of the cancer’s progression. Abdominal pain had me permanently hunched over despite the opiates. Bleeding resulting from the cancer’s spread to my uterus and vagina was a constant visual and graphic reminder of the cancer. General weakness made me gratefully squat during the short elevator rides to and from my apartment floor when no one else was around. A two-minute trip to the bank became a monumental outing that required mental preparation and then physical and mental stamina. And food—well, that was especially upsetting. I used to love eating, this fundamental affirmative act of life, even through years of chemotherapy. And now I couldn’t stand the sight of food, nor could I muster the energy or desire to cook, which I once enjoyed tremendously.
No doubt my body’s rejection of this basic need and joy in life was a sign of its desire to not live anymore. I used to be so strong, naturally muscular, and I augmented that natural strength with frequent intense workouts. I used to lug thirty pounds of groceries from Trader Joe’s on my back. I used to be able to carry one baby on my back and one in my arms and go up and down stairs. What happened to that woman? She was becoming an ever-distant memory, and I was sad, not for my daughters or my husband, but simply for me, for I realized that I was losing the person who I once was and whom I loved, and this dying woman, this woman who was aging at an accelerated pace, an ugly, ever-thinning creature, was taking her place. As I prepared to die and the invisible wall between me and the living grew thicker and taller, I mourned my own impending death in an ever-shrinking bubble of isolation, loneliness, and darkness.
But then, once my summer of grief was over, my perspective shifted, and a sort of peace came over me. I was sad to be leaving my husband and my daughters, but I felt something else, too: awe at what was happening to my body. I couldn’t watch myself be born, but with eyes open, I could watch myself die. And that is no less a miracle than any other. It is hard to find the beauty in dying, but I’ve learned; I’m learning still.
My grandmother died when I was twenty years old, and it broke my heart because I loved her so very much. My mother told me that my grandmother hated me for a very long time, that she didn’t grow to love me until long after we came to this country and I had gained some sight. The odd thing is that when I was growing up, I would have never guessed that my grandmother hated me. She was a wonderful grandmother to all thirteen of her grandchildren, cooking weekly feasts for us and calling us constantly to ask whether we’d eaten dinner yet and coming over to fold our laundry. She had had a hand in raising and caring for each of us at some point in our lives. During the summer before she died (no one, including her, knew she was dying), she and I would take walks in the coolness of the setting sun, her hand grasping my elbow; I was never sure whether she was using me as support or whether she thought she was guiding me; maybe it was a little bit of both. She came with me to the airport to see me off to my senior year of college—she’d never done that before. I remember feeling slightly nervous and nauseous at returning to school after a year of studying abroad and laying my head on her shoulder in the backseat of the car as my dad sped along the freeway at that early hour; I remember hugging her and telling her I’d see her at Christmas and her waving goodbye to me as I boarded the plane.
Seven weeks later I flew home to sit at her hospital bedside as she faced her last days, her skin yellowed, her body bloated, and her ability to speak gone. She was surrounded by her enormous family. Her daughters-in-law would take turns spending the night with her to make sure she was never alone. I was moved by all the love that surrounded her. There was something special about my grandmother, something that drew people to her, even in her darkest days.
I tried unsuccessfully to study for midterms as I tried much harder to process this first death of someone I truly loved, to reconcile this diminished woman who was days from leaving this world with the dominant woman I’d always known, she who had left her little village as a girl to travel by boat to a foreign land where a boy she’d never met waited to marry her, she who had never learned how to read but through her sons and grandchildren found all the succ
ess she ever dreamed of, she who had such an iron will that she’d not thrown up once on the fishing boat that took us away from Vietnam even as everyone around her retched into the sea.
At the end of the fourth day of my visit, I went to bid her farewell, knowing that once I left her side that evening I would never see her alive again. The room was filled with her children and grandchildren. I took her hand—it was too warm and as dry as rice paper. Her eyes remained closed, as they were most of the time now. “I have to go back to school tomorrow, Grandma,” I said in our Chinese dialect. I wasn’t sure she could hear me or if she was even awake. I switched into English then, because I didn’t have the words in Chinese, knowing she would understand at least the universal sentiments. “I love you, Grandma. I’m going to miss you so much. And I’m going to make you so proud of me, I promise.” In tears, I put her hand back on her stomach and turned away to leave the room, to find a corner in the hallway where I could cry and grieve in solitude. I barely heard the sudden sobs that arose from those in the room as my father grabbed my shoulder and forced me to face my grandmother once more. She’d raised her hand and was waving it ever so slowly back and forth in a gesture of farewell. What that simple act must have cost her in terms of pain endured and energy spent I can only imagine. Understanding that this was her ultimate gesture of love left me crying for days, months, and years afterward.
I’ve spent the years since my diagnosis grieving and exploring the darkness, but I’ve also basked in the love and compassion shown to me, not unlike the love shown to my grandmother. I have loved my family and they me much more than if I had not become sick; we’ve learned to communicate with each other with an intimacy I would have never dreamed possible had life gone the way I had planned. Because of my insistence on honesty in confronting death, my girls show an emotional maturity, compassion, and appreciation for life rarely seen in children of their age. We have traveled far and wide; I oversaw the combination and construction of a beautiful home that my children will grow into for years to come. I’ve rejoiced in the ordinary, too, the things that others take for granted and even resent—the cooking and the parent-teacher conferences and the forcing of homework and violin practice. I have lived even as I am dying, and therein lies a certain beauty and wonder. As it turned out, I have spent these years unwinding the miracle that has been my life, but on my terms.
Before the light goes out, I would like to say that, Second Wife, I don’t hate you. Please love the family that was mine with all your heart. Take care of them, and live out the life for me that I could not.
Mother, Father, I forgive you. And I thank you.
I will see you soon, Grandmother. I have some things to say to you. I have been thinking about them for a long time.
And for any who might be reading this: I am grateful to have had you here, on this journey. I would presume to encourage you to relish your time, to not be disabled by trials or numbed by routine, to say yes as much as you can, and to mock the probabilities. Luxuriate in your sons and daughters, husbands and wives. And live, friends. Just live. Travel. Get some stamps in those passports.
I traveled to Antarctica several years ago. There, in the midst of its vast unearthly beauty, I felt as if I were glimpsing another planet, another dimension, possibly the afterlife. It was a retired widower from Indiana whom I’d met a year earlier during a safari in South Africa who told me he’d been to Antarctica and that it had been a very spiritual experience. That planted the seed in my head, and after a particularly exhausting transaction closed at work in October 2005, I booked a last-minute trip to Antarctica for late November, several weeks ahead of my thirtieth birthday. I went alone (or as alone as you can when going to Antarctica, since there really is no way for the ordinary tourist to get there other than to join a group), making my way down to Tierra del Fuego, the very tip of South America, from which all the Antarctica-bound ships in the Western Hemisphere depart. Together with forty-three other tourists from all over the world, I boarded a Russian ice vessel and embarked on a turbulent two-day crossing of the Drake Passage to reach the Antarctic Peninsula.
On Thanksgiving Day, as we approached land with the ship breaking through sheets of ice that had formed on the water’s surface, I stood on deck, gazing in absolute wonder at the massive glaciers in infinite shades of white, blue, and green rising above the water, majestic arches and craggy mountains made of old and new ice sculpted over time, more glorious than anything ever made by any human being. The blue of the cloudless sky, the light of the sun that, at that time of year, shone for twenty hours a day, and the perfect whiteness of the land itself was so intense that it was almost too much to bear.
Over the next seven days, I would escape the noise of the ship to kayak, paddling through the deepest quiet and the silkiest waters, waters that rippled with each stroke, waters that perfectly reflected the sky’s mood. Contrary to popular belief, Antarctica is not all white. It is yellow, pink, red, and purple in the light of the quasi rising and setting sun; it is black and gray in the volcanic rock that covers the beaches where the snow has melted for the season. It is orange in the penguin beak, green in the shallow waters, and brown in the seal coat. And to it all, there is a vibrancy, purity, and beauty that never failed to make me breathless and tearful, that made me grateful to whatever gods there may be for having given me sight to behold such magnificence.
In Antarctica, I felt as if we had departed our home planet and were closer to some serious answers about what it all means. One cannot help but think big thoughts in such a place. One cannot help but imagine God—and I use the word God to refer not to the one depicted in any religious teachings but rather to a being that may very well be a force comprised of all the life that has been and is and will be, a force that is incomprehensible to the mind but perhaps perceptible to the soul, the way great poetry eludes logic but overwhelms the emotions. And within the shadow of that greatness and grandeur, I felt small, insignificant, a little life spanning a second in time on a little blue planet, in a solar system, in a galaxy, in a universe that goes on forever and ever, an infinitesimal blip in space and time.
Feeling small and insignificant is a rarity in the course of our daily lives. Sure enough, once I returned from Antarctica, I again became consumed by the minutiae of my life, minutiae that often felt important and momentous—navigating family and friend dramas, drafting hundred-page contracts late into the night and vehemently negotiating with opposing counsel over little words as though it all mattered so much, feeling annoyance at the guy who cut me in line, planning a wedding, buying an apartment, agonizing over which crib to buy, battling the kids over teeth brushing and TV watching and on and on with all the stuff of life. We live every day not in the shadow of greatness and grandeur but within the confines of our small but seemingly enormous lives. It is a natural way to be; after all, we must live our lives.
And then things happen that jerk us out of our complacency and make us feel small and powerless again. But I have learned that in that powerlessness comes truth, and in truth comes a life lived consciously.
When the time comes, I will happily and with a great sigh of relief climb into my bed knowing that I will never need to get up again. I will surround myself with family and friends, as my grandmother did. I will eagerly greet the end of this miracle, and the beginning of another.
Epilogue
by Joshua Williams
I’d like to begin by saying that I am a much more private person than Julie was. I don’t think that it would have ever occurred to me to do what she has done—to leave a chronicle of her life and her illness that lays it all bare, and reveals her story so intimately, to so many. But of course I believed in her so completely, and loved her so dearly, that I became a believer in her writing, my personal feelings aside, no matter how hard it was to sometimes read.
And so now I put the finishing note on this story, just as she asked me to do.
I write
this from the room in our apartment, our dream home, where Julie died.
Her hospice bed was right here, here as she said her final goodbyes, here as the cancer finally had its way. It’s been three months and four days since that morning—March 19, 2018—a bright late-winter morning. So much living happened in this room before that day, though. Before Julie combined the apartments that became the wonderful home she made for us—she was sick the whole time, it must be said—this room was our master bedroom. Here, in this sun-splashed room, with its view of the Statue of Liberty, Mia and Isabelle were conceived. Here, we looked out at the most dazzling sunsets in New York, and had some of the most intimate conversations of our marriage. Here, feeling flush with the future, we planned our life together.
In the end, here was where we tried our very hardest to make Julie’s last days comfortable.
For the entire last year, Julie had been leaving us in stages. The mets were increasing, everywhere. By late fall, she had had several bouts of pneumonia, and we discovered that she had a new tumor in her lung the size of a peach, which she chose to have irradiated, just to buy some more time. Even so, we knew that Thanksgiving would be the last Thanksgiving. Christmas would be the last Christmas. Her birthday in early January 2018 would be her last birthday. The pace of her decline was accelerating, and in the end stage of metastatic disease, the stage known as active death, the life leaves you by the hour, and the pain increases exponentially. To keep up, the home hospice aides had to increase her pain medications to astonishing doses just to keep her as comfortable as possible.
The Unwinding of the Miracle Page 30
