Dr. M. understood my exhaustion. He took out a piece of paper and started writing down exactly what I should do: Caris genetic testing of my ovarian tumor from the surgery in May. Updated testing has a 10 percent chance of helping me determine future clinical trials. He would take care of it for me if I handled the paperwork, since he can ask for testing beyond the standard course. Lonsurf and Stivarga have a 40 percent effectiveness rate for an average of six months, with some patients experiencing quite a long tail. They both offer stability, not shrinkage. Stivarga, despite what the blogosphere and the Internet say, is not so horrible, especially when dosed appropriately—he starts at 120 milligrams. He administers Lonsurf with Avastin. No Avastin with Stivarga. Choosing between the two is just a question of what side effects I’m willing to tolerate more—nausea and fatigue versus hand-and-foot syndrome. He knows of the SGI-110 trial and thinks it’s “reasonable” for me to do, and I should allow the randomization gods to take one decision away from me.
As for how much time I have, he doesn’t know. I’m not in any immediate danger. He asked me if I’ve ever seen my scans. I told him I’ve always been afraid to look. He walked me through my scans to illustrate the point that I don’t have that much disease. We discussed where my disease was more dangerous, in the lungs or the peritoneum. In other words, Where will the disease actually kill me? I have always been afraid of peritoneal disease because my impression is that it grows so quickly. He said that if he had to choose, he would say peritoneal is more dangerous, not because of the rate of progression but because of the implications for quality of life. Peritoneal disease causes bowel blockages, which have a tremendous impact on quality of life (i.e., pain and the inability to eat and drink). However, at that point, artificial food administered through IV becomes an option. The disease in my lungs is still small, a centimeter here, a centimeter there. But once that disease grows large enough, my lungs will fail and I will die. There is no artificial means to get around failing lungs.
My meeting with Dr. M. was the best oncological appointment I have ever had. Speaking to him made me realize how I had been having misgivings about Dr. A.C. for a while, how he could never answer my questions or seemed to always defer my questions. Dr. A.C. was the kind of doctor with whom I could have a collaborative relationship, the kind of doctor I could text and email any time of day. But I don’t want or need that anymore. Dr. M. condemned him for allowing me to go on the radiation and immunotherapy combination. He was furious because I have now burned a bridge to go on trials for other immunotherapy drugs involving similar agents. I was well aware of this risk, as was Dr. A.C., but he seemed to brush it off and so did I. I now have so much regret for going along with Dr. A.C.’s “crazy” idea. As a friend told me, though, it’s impossible to go through this cancer journey without having regrets, given the number of decisions we have to make at every turn. But I don’t think the detour will make much of a difference ultimately. I’m still going to die.
I went in to see Dr. V. to sign the consent to enter the SGI-110 trial and to tell her that I would be switching my care to her and MSK, even after the trial. I have always been put off by the institutional nature of MSK, the long waits, the lines to enter the elevator, the seeming impersonal nature of it all, but I don’t care anymore. I want the institutional support. I believe that I’m looking at months rather than years now, and so I want an institution like MSK to be behind me.
I’m feeling much better now that there is a plan, and recent events have brought me a strange kind of peace, and calm. My abdominal pain is gone. I went lap swimming for the first time in years, and even though I’ve always struggled to breathe with the proper technique, I learned that day with the help of a friend and a stranger swimming in the neighboring lane.
Despite what I just wrote, I don’t hate any of you.
37
Faith, a Lesson of History
It meant that I was closer to the end, but I didn’t care—I was glad to see 2016 go. With it I felt a great deal of bitchiness go, too. I would rededicate myself to making memories for Mia and Belle.
The Chilean writer Isabel Allende (most famous for her novel The House of the Spirits), in her memoir Paula, tells the story of her extraordinary life to her daughter Paula, as she lies in a porphyria-induced coma from which she will never awaken. I read Paula more than fifteen years ago, and yet a series of sentiments recorded on page 23 have never left me, and they come back to me now more powerfully than ever. Allende tells her daughter of her past—a thing she calls her “innermost garden, a place not even my most intimate lover has glimpsed.” “Take it, Paula,” she tells her, “perhaps it will be of some use to you, because I fear that yours no longer exists, lost somewhere during your long sleep—and no one can live without memories.”
I am a lover of memories, of the past, of history. I majored in history in college, studying American, Chinese, European, African, social, economic, political, and cultural history. I find fascinating how some unique, charismatic figures, like Jesus Christ and Chairman Mao, and revolutionary innovators, like Thomas Edison and Steve Jobs, altered the course of human history. The rest of us are merely swept along by the tide of events set in motion by others, past and present, and by events that are brought about by forces that are entirely beyond our control (i.e., God, Mother Nature, or the randomness of the universe, which brings about things like natural disasters and illness, depending on one’s religious and philosophical views).
It is the stories of the rest of us that I find most intriguing and valuable—the story of the black Caribbean woman who fled her abusive husband for a New York City shelter with her three children, the tale of how an American World War II POW survived months alone drifting at sea and then years of torture by the Japanese, the saga of the incredible will to live of members of a Uruguayan rugby team whose plane crashed into the Andes in 1972, the unlikely story of one woman’s ability to live fifteen years after being diagnosed with metastatic colon cancer. There are so many stories. Indeed, the truth that has been lived by our fellow human beings is much more inspiring than any yarn woven by the greatest storytellers.
But Allende reminds me that there is value in our individual memories, our own past, our own history; after all, what are we but the products of all our experiences? Rather than looking without to find inspiration, strength, and hope, sometimes we must look within ourselves to discover and discern our own stories. There are, after all, miracles in there. Of course, looking within is much more difficult, for we must confront our painful mistakes, our fears, our weaknesses, our insecurities, our ugliness.
When I was first diagnosed with cancer, Josh read my surgical and pathology reports what seemed like a hundred times. I could barely manage to get through my surgical report once without being nauseated by the image of parts of my body being removed. Josh read every relevant medical study he could find online multiple times, learning foreign medical terms and making reasoned conclusions about my prognosis that left him more hopeful. I read one sentence of one study and felt drowsiness setting in, and that was the end of that endeavor to take my medical care into my own hands. Josh puts his faith in science, based on numbers and reason. I put my faith in me and a higher power, based seemingly on nothing tangible, in what some would call complete irrationality.
As irrational as it may seem, my faith comes from my memories, from an understanding of my own history, and to a lesser degree, the history of my parents and those who came before them. My very first memory is of crawling up the narrow staircase of our house in Tam Ky, Vietnam, where there was no railing to protect me from falling onto the dust-covered cement floor. My second memory is of sitting on my grandmother’s lap on the Vietnamese fishing boat on the South China Sea, a bare, dim bulb swinging overhead (in my blindness, I could still detect some light and motion) and the mournful prayers of three hundred people begging to reach the safety of the refugee camps in Hong Kong ringing in my ears. I remember a year
later trying to fight off the mask that would deliver the general anesthesia in advance of my first sight-giving surgery, at the Jules Stein Eye Institute at UCLA. I remember lugging my large-print book around and all the other kids staring at me like I was a freak. I remember not being able to fill out the answer sheet for the PSATs my sophomore year in high school because the bubbles were too small for me to see them, even with my magnifying glass, and sobbing for the rest of that weekend, feeling the weight of all my limitations. I remember the elation I felt when I told my parents over the phone I had just been accepted into Harvard Law School and how I heard my father clapping with possibly more joy than I felt, like a little boy who had gotten what he wanted for Christmas.
There are so many more memories, both joyful and painful, but I think anyone can understand based on these memories alone why I have faith in myself and some unseen hand. I have felt God’s presence more than once in my life, and I have felt his absence. And in those times when God was otherwise occupied, I found, through my shame, frustration, heartache, self-pity, and self-loathing, a strength and resolve that I didn’t know I had.
When I woke up at 4:00 A.M. the day after my colonoscopy, the day after we learned that I had colon cancer and before I was transferred to UCLA for the surgery, during what I would call the darkest hours of my life, after I realized that this wasn’t a nightmare from which I would awaken, the fear overcame me and I couldn’t breathe as I sobbed hysterically into the lonely darkness of that miserable hospital. The future, however long or short, loomed ahead of me, a mass of pure darkness the approximate shape of the mass inside of me. I dug deep then into my past, to find another moment of comparable fear. In truth, there was no fear that I had ever experienced that was comparable to that. But there was one memory that was close, which came during the summer after my first year of law school, when I went to Bangladesh. Although I yearned for what I knew would be an enriching experience, I was terrified. A little Asian girl who can’t see very well going alone to one of the poorest countries in the world without any familiarity with the language or culture—it was a bit daunting. Bangladesh, in the days and months before my trip, seemed shrouded in shadows. What if I was mugged or got into a terrible accident or developed dengue fever? I remember acknowledging the fears and doing everything I could within my control to mitigate the risks—I had my mother sew secret pockets for my money and passport into my underwear; I worked out hard so I could be physically strong and fight as fiercely as I could if I were attacked; I bought travel insurance. Then I let everything else go and put faith in myself and a higher power, and I just walked forward, through the fear, into my incredible adventure. Rather than shrouded in shadows, Bangladesh was and is a beautiful place filled with vibrant colors and kind people. My dark prognostications had been wrong.
That night in the hospital room, I willed myself to again acknowledge the fear, told myself to do everything within my power to control my destiny and let everything else go, and then ordered myself to look ahead and walk through the fear once more.
Allende describes her life as a “multilayered and ever-changing fresco that only I can decipher, whose secret is mine alone. The mind selects, enhances, and betrays; happenings fade from memory; people forget one another and, in the end, all that remains is the journey of the soul, those rare moments of spiritual revelation. What actually happened isn’t what matters, only the resulting scars and distinguishing marks. My past has little meaning; I can see no order to it, no clarity, purpose, or path, only a blind journey guided by instinct and detours caused by events beyond my control. There was no deliberation on my part, only good intentions and the faint sense of a greater design determining my steps.”
Each of us has a story. Each of us has experiences from which we can draw strength and that can serve as the basis of our faith. It is just a matter of whether we are willing to dwell in often unpleasant memories, to extract the lessons of our history, to find the secrets of the journeys of our souls. Just as Allende sought to give the secret of her life story, her past and her memories, to her daughter, I find myself wanting to do so for my daughters.
38
Home
Just after the new year, scans showed that I had failed the clinical trial I had been on at Memorial Sloan Kettering (or more accurately, the trial had failed me). The scans revealed growth in abdominal lymph nodes and two new lesions on my liver (which I suppose is preferable to new lesions in my liver). The news was, while not unexpected, still upsetting, because I now have involvement in another vital organ, another way by which the cancer could actually kill me. Will it be my lungs or my liver? There was some shrinkage and some growth in my lungs, so the thoracic tumors were overall unchanged. I lost my hair for that awful trial, suffered unbelievable fatigue, underwent an atrocious lung biopsy, and for what? Absolutely nothing!
Dr. V. offered to put me on Lonsurf, which is standard of care. It is oral chemotherapy that has shown limited effectiveness in a subset of colorectal cancer patients and at best can only offer stability for several months. When I had consulted with Dr. M. at Georgetown in October, he told me he always prescribes Avastin with Lonsurf because they operate on different pathways. Based on his recommendation and the tolerable nature of Avastin, I wanted to do the same. Dr. V. told me Memorial Sloan Kettering doesn’t do that. Why? Because that combination is not indicated, Dr. V. told me (i.e., there are no studies to support the combination, although there are no studies to not support that combination, either). I left her office, emailed Dr. A.C. while on the subway, and received a response minutes later, saying that he would prescribe the Avastin with Lonsurf for me, assuming there was no objection from the insurance company. He secured both for me in less than two weeks.
I left home, for college, when I was seventeen years old, and other than short stints, I never went back. For years, I lived in dorm rooms, homes of host families abroad, sublets, and apartments with short leases. I flitted about, going to school, studying abroad, traveling, working, and then more school, and then more work and more travel. I craved newness—new places, new people, new challenges. Strangeness was frightening, but mostly it was exciting. I didn’t have a home to call my own, but that didn’t matter to me. I was poor most of the time. The more uncomfortable my habitat the better, because that meant I was saving money.
Back then, I thought I would live forever, that I was invincible, and I embraced my freedom with an abandon that belongs only to the young. I wasn’t so different from anyone else in her late teens and twenties. But age and kids and actually earning a decent living changed me, and cancer even more so. I have become a creature who yearns for comfort, for a sense of security, for home. It’s obvious in the way I cried hysterically amid the impersonal unfamiliarity of MSK and how gratefully I returned to NYU. It’s obvious in the way I just want to actually be at home all the time now.
After eight months of construction, a couple more months of punch list items and hanging things on the wall, and buying a piano (our last piece of new furniture), the home that Josh and I dared to dream of in the summer of 2015, despite the ever-present black cancer cloud, has been realized. I cannot determine what I love most about our new home: the oak-patterned, gilded wallpaper that accents one of my bedroom walls; the mantel over the new electric fireplace made from a piece of reclaimed walnut; the row of custom-built closets with lights that automatically go on and off with the opening and closing of the doors; radiant heating in the bathroom floors; or the motorized window treatments. I made all the design decisions—thank you, Josh, for giving me so much latitude—knowing that this place would be the last place I will inhabit and most certainly would be where my family and friends will come see me in my final days and where I will die. I wanted it to be a place of as much luxury and comfort as Josh and I could afford.
Much more important than that, I designed it, knowing that it will be the place in which my children will grow up. I had to think about the a
djustable nature of shelving in their closets, the versatility of a bathtub over a shower stall over time, and how the extra room could serve as a playroom now and then one day as a teenage hangout separate and away from the adults. I think of the apartment as a gift to my children, a tangible legacy of a home that I hope they will treasure for many years.
Now, there are many nights when I lie on Mia’s or Belle’s bed staring up at the princess chandelier that hangs above and I recall all the nights that I lay on my own bed as a little girl and then as an adolescent. Of course, back then my mattress was lumpy and dented, and I stared at a popcorn ceiling and an ugly square overhead light fixture with a giant black screw in the middle. But it was in that childhood bedroom—a room that has long since been demolished together with the rest of the house—that I wondered about my future, about the faceless and nameless man I would one day marry, about what seemed like four long years at a faraway college that loomed ahead. It was there that I dreamed of seeing the world, of traveling, of adventure and romance. I stressed about exams and worried about friendship dramas that I no longer remember. Now I lie on my daughters’ beds and wonder what thoughts, fears, and dreams will course through their minds and hearts as they lie in that exact same position. I think to myself, as I stare at these rooms I built just for them, that if I concentrate hard enough, I will leave a bit of me behind in this place, so that when they lie in their beds with exhaustion or anxiety or hope, I will be there to share in those most intimate thoughts and feelings, that a part of my spirit will always be with them, especially in this place. To the extent that a place can convey anything of substance about those who labored to make it, I hope their bedrooms, their bathroom, this entire apartment, their home, will bestow upon them the absolute certainty that their mother loved them so very much.
The Unwinding of the Miracle Page 25
