As my sister told me, the most important person in this whole process would be the contractor and, fortunately for me, I have a contractor whom I absolutely adore. Now, how often do you hear that statement? He worked on the redesign of our living room last December, the month when I learned of my recurrence and incurable status. The poor guy chose the wrong time to call me, days after I received the news, and ask me how I was doing, for which he got an earful of my tears. I think he must feel really sorry for me, because since then he’s been so very kind and concerned and has even come by to replace lightbulbs. What contractor makes house calls after finishing his job to change lightbulbs?
I asked him to come by a couple weekends ago to look at the other apartment so he could give me a very preliminary cost estimate, during which I had a frank discussion with him about how I would need to be able to trust him to carry out my wishes if I got too ill or did not survive long enough to see this through to the end. He was immediately alarmed, wanting to know if there had been negative health developments. I assured him that I was stable for the moment, but I had to always prepare for the worst. He looked me in the eye, put his hand on my shoulder, and declared, “Nothing is going to happen to you. I’m not going to let anything happen to you.” I was so moved by his obvious concern and his belief that he could somehow affect the course of my disease. That kind of support is priceless.
Ever since I was diagnosed, I’ve learned that so much of life’s hardship becomes more bearable when you are able to build and lean on a network of loyalty, support, and love, and gather around you people (even your contractor) who will stand by you and help you. But the thing is you have to let them in; you have to let them see the heartache, pain, and vulnerability, and not cloak those things in a shameful darkness, and then you have to let those people who care about you help you.
Finally, I asked my oncologist for his blessing. I felt like I needed this most of all; actually, his blessing was the only one that truly mattered to me. Not that he could see the future, exactly, but he knew more about what was inside of me than anyone. His response was rather comical in its briefness in light of how much thought I had given to the cancer in making this decision. “Do it!” he said. Brevity really is the soul of wit. My cancer, this thing that has often felt like it controls every part of me and my life, seemed to be such a nonissue to him in this regard.
And with Dr. A.C.’s blessing, we moved forward. It would be a few months before we could start the construction work, since we still had to decide on the conceptual designs, obtain building and city approvals, and finalize the financing. But signing the contract was the first big step.
It took me two solid years of living with metastatic cancer to realize an important truth: barring some physical pain or other impediment brought on by cancer or its treatment, it isn’t cancer that denies me my dreams; it isn’t cancer that would prevent me from going on vacations or buying a new home or doing anything else that I long to do. Rather, it is a paralyzed mind succumbing to the fear and unpredictability of cancer that would deny me my dreams. In its paralysis, it groups into one category all dreams that are truly gone (such as having another biological child) with dreams that can be reshaped and redefined, or even new dreams that are derivative of a cancer diagnosis. In its paralysis, the mind cannot form contingency plans; it cannot be brave and bold and forward thinking; it cannot accept what is without running from what will be.
In one of the many ironies that have come with having an incurable prognosis, it is as if by accepting the inevitability of my death from this disease, I have freed myself from that paralysis. Similarly, I can move forward now with some degree of certainty; I can plan for myself and my family, for as much as I emphasize living in the here and now, living and loving those whom we love by necessity requires some degree of planning, of thinking about what might be, of dreaming for them if not necessarily for ourselves.
I rejoice in my liberation, in my own courage to move forward, in the rebirth of a dream I once thought was forever lost to me.
Live while you live, my friends.
28
Solitude
I am being brutally honest, as part of my commitment to give voice to all those I know who feel as I do, and to depict the dark side of cancer and debunk the overly sweet, pink-ribbon façade of positivity and fanciful hope and rah-rah-rah nonsense spewed by cancer patients and others, which I have come to absolutely loathe. I believe, as I have always believed, that in honesty—a brutal yet kind and thoughtful honesty—we ultimately find not vulnerability, shame, and disgrace, but liberation, healing, and wholeness. I hope my family and friends do not take offense at this honesty.
In early August 2015, I received some bad scan results, which made for a somewhat difficult couple of weeks. Because bad news seems to come in multiples, a few days later, I learned that my ever-so-historically-reliable tumor marker (CEA) had risen yet again, another 7 points to 29, the largest single increase in a three-week period yet. For me, clicking on that link that reveals the latest CEA results is more stressful than hearing my scan results, probably because my CEA has always told me what to expect in the scans. For those of you who don’t know what it’s like to find out what your CEA is when you have metastatic cancer and the result is not good, it’s like having my heart collapse into my stomach; the walls close in and I feel a primal panic and desperation I imagine an animal pursued by a predator must feel as it realizes it’s caught.
Curled up in a fetal position on my bed was how my children found me after I had clicked on the CEA link. Belle asked me why I was crying. “Mommy is just really sad,” I told her. My sweet and uniquely perceptive girl then gave me a hug and declared, “Don’t worry, Mommy. I’m still going to love you when I grow up.” You see, I do fear that in my absence, my children’s memories of me will fade and they will love me less and less over time. Her words made me weep with a renewed vigor. Josh came home shortly thereafter. I told him about the CEA results and cried into his neck. He acted so calm and strong for me even though I knew he was upset. Even so, sometimes I think the intensity and ferocity of my emotions are too much for him, especially since he has to come to terms with his own. He urged me to call my sister or my best friend, anyone. The only person I wanted to talk to was my therapist, but she was away until September. Usually, as expressive as I am in writing, I have the same compunction to verbally unload my heartaches to those closest to me in life (besides Josh), because I know that for me the process of verbalization is healing. But not now. I didn’t and still don’t even want to talk to people who have my disease, at least not anyone who is in a better position than I am, and I imagine anyone who is in a worse position doesn’t want to talk to me. My self-imposed reclusiveness and isolationism is partly because of the jealousy and the hate.
I cannot imagine anyone saying anything to me that would be remotely helpful or comforting. I don’t want to hear about the promise of immunotherapy. I don’t want words of sympathy. I don’t want sage words of advice about how to live the remainder of my life. I don’t want to talk about it. I don’t want to answer any questions. I don’t want to have to be forced to explain anything to anyone. Whatever explanations I give and whatever information I divulge must be on my terms and at my initiation, not because someone asked or because I was forced into some social interaction.
Perhaps isolation, at least emotionally if not physically, is what happens as you get closer to death, as you understand more powerfully than ever before that this journey to the end is one that must be made absolutely alone. It feels as if whatever comfort there is will be found within, rather than without, from private conversations with my innermost self and, when I can muster belief, the gods.
I heard back from the surgeon in Germany about the laser surgery. I now have too many mets in my lungs, forty in each one, and too many are centrally located. I am inoperable. This laser surgery is supposed to be able to resect up to one hund
red mets in each lung. It was sickening to hear that I’m not even a candidate for it, more sickening than hearing about yet another CEA rise. The other surgeon, in the United Kingdom, never got back to me. I see no point in pursuing him further since he’s a student of the German surgeon, and I can’t imagine his opinion will be any different. I suppose that’s 24,000 euros saved and I won’t have to spend weeks away from my children. That’s what I told myself, anyway, to make myself feel better.
I’ve been crying a lot, in bed, at the gym, during acupuncture, in restaurants. It’s not as bad as it was in those dark days of December and January. I’m still engaging the world. I acted relatively normal at Belle’s fourth birthday party. I have even managed to see a couple friends. I still laugh and think a lot about other things besides cancer.
The night after I heard from the German surgeon, I was lying in bed between Mia and Isabelle. Belle had fallen asleep, but Mia was still awake and demanding that I tell her a story. I like to tell her stories about my life and my family growing up. She loves to hear about my and my family’s escape from Vietnam, but that night, in my heightened emotional state, I wanted to tell her another story about me, something she’d never heard before. I had been talking to her about the virtues of discipline and hard work as they pertained to her violin practice. Even though she’s been studying violin for only three months, her teacher has repeatedly told me and Josh that Mia is exceptionally talented. She seems to have inherited Josh’s incredible musical ability.
Not long after her lessons began, I was sitting in on one of them and was so impressed by the sounds coming out of her instrument. I said to the teacher, “You know, I’m really glad I decided to rent such a high-quality violin for Mia. It sounds really good.” Her teacher responded, “Actually, I’ve had plenty of students who have played on expensive violins and they did not sound good. Mia is really talented.” I was shocked. It had never occurred to me that my daughter could actually be gifted at the violin. Of course, I would think that the nice sounds coming out of the instrument were because of the instrument, not because of my daughter! It was such a Chinese mom moment, so deprecating, so doubtful. My mother said things like that about me and my siblings all the time. If you’re Chinese, you will understand.
Ever since then, I’ve made a conscious effort to really believe in and nurture Mia’s musical ability to make up for my Chinese mom moment (and to resist the voice of skepticism when it tells me that the teacher is exaggerating). So I’ve been pushing her to practice daily, which is like pulling teeth without novocaine at times. Recently, rather than rewarding her with stickers and toys for practicing, I’ve been trying to explain to her that the goal (among others) is to instill in her a sense of discipline, although I’m not sure how much a five-year-old understands or cares about the virtue of discipline and its implications for life. So that night, I thought I would make the point through one of my stories.
I gathered Mia close, and we lay on our sides like a couple of nesting spoons, her long, spindly arms and legs tucked in as tight as possible and the bright hallway light casting a reassuring glow on the wall at which we were staring. And I began:
Mommy is going to tell you a story about Mommy that you haven’t really heard before. You know Mommy was born in Vietnam, but did you know I was blind when I was born? It was after the war, and there was no food or money, no money for Neh and Gong [what Mia calls my parents] to pay a doctor to make Mommy better. And even if they did have the money, there were no doctors in Vietnam that would have known how to fix Mommy’s eyes. But somehow we found a way out, and eventually we made it to this country, the United States. And even though we didn’t have any money, because nice people gave us money, Mommy was able to go to one of the best eye doctors in the world, and he fixed Mommy’s eyes. But even he couldn’t make them perfect. I still can’t see very well. That’s why I always ask you to help me see. You are my eyes sometimes.
I was really sad a lot when I was little because I couldn’t see like Uncle or Titi or Mommy’s cousins. I wanted to be able to ride a bike and play tennis and drive a car. I wanted not to have to use big books with superbig words. And no one understood how Mommy felt. I was alone and sometimes lonely in my world of half-blindness. Because Mommy couldn’t see very well, everyone in Mommy’s family thought I was not very smart. They didn’t think Mommy could do anything. Mommy got really mad. I didn’t like people telling me what I could or couldn’t do, and I was determined to show them that I could do anything I wanted. Remember that, Mia: only you can determine for yourself what you are capable of; no one else can, not even Mommy or Daddy.
So Mommy worked really, really hard and exercised a lot of discipline. I studied a lot, and then people started to realize that even though I couldn’t see well, that didn’t mean I was dumb or that I couldn’t do anything with my life. I got really good grades in school and ended up going to a good college. I traveled all over the world by myself, which isn’t easy when you can’t see well. I found a good job. And do you know what was the best part, Mia? Finding Daddy and then having you and Belle. I never thought I would be able to find someone like your daddy who would love me so much, and neither did anyone else, it seemed, and all because I couldn’t see like everybody else. I never thought I could get married and have kids. I never thought anyone would want me. You, Belle, and Daddy are the best things that ever happened to me. But everything good in my life started because I was willing to work hard, to be determined and disciplined because I wanted something for myself so very much. That’s why I want you to learn the value of working hard. Don’t ever forget this story, okay? I want you to remember Mommy’s story forever.
Mia was quiet for a minute, and I knew she was processing in her quick brain what I had just told her. Then she said, “I won’t forget, Mommy, but you should write it down. Then when I’m bigger and I can read better, I can read the story and remind myself.”
29
A Game of Clue
Lately my thoughts have been trapped inside an exhausted mind.
I’ve been busy thinking about bathroom tiles and flooring and gilded wallpaper, calculating costs and pondering the finer details of the proposed layout. How I wish that my life was made up entirely of mundaneness, for I am so sick of existentialism. But alas, simplicity and normalcy have never been and will never be my destiny.
The cancer part of my life has dominated of late. In early September, I sank into the darkness of a new abyss, one characterized by anger, bitterness, hate, and paralyzing loneliness. The recent loss of two true friends, combined with the horrible side effects from my most recent treatment plan, has pushed me over the edge.
These were friends whom I saw from time to time, and whom I visited a few weeks before they died. Chris was a kind soul, beloved husband, father, brother, son, and friend, chess player and teacher and, least of all, my mentor of sorts on this cancer journey. He listened to my ramblings over lunch or tea, observed how I had grown over the months from the belligerent warrior who was determined to beat this cancer to the more contemplative philosopher who seeks above all else to find meaning, peace, and acceptance in a life over which I have little control. Cancer, at least for me, truly is a journey that makes me question and analyze all my beliefs about myself (as in whether I am strong or weak, brave or cowardly), about the existence of a higher being and its role in the affairs of mankind, about commitment and love (as in how far will I go to stay alive for my family), about the meaning of my life and life in general, about death and what awaits.
If you are open to these inevitable questions, which only something like incurable cancer can force into the forefront of your mind, if you allow yourself the time and patience to mull over these complex, baffling, painful, and impossible queries, the journey will both change you (for the better, I believe) and make you more of who you have always been.
Chris understood that long before I did. We shared a similar philosophy, heavily in
fluenced by Buddhist thought, but he was wiser than I, and so he was a teacher to me. I went to see him as he was entering hospice care. We sat on his terrace with a view of the Atlantic Ocean and talked of his sadness and expectations, and I marveled at his genuine lack of bitterness, anger, and fear; he was grace and dignity personified. As I said my final farewell, knowing that I would never see him again, I hugged him and asked him to wait for me on the other side. He said he would, and that gives me great comfort.
Chris was the first true friend I lost to colon cancer. Yes, I’ve written about others, but they were more in the nature of virtual friends. I didn’t meet them for lunch. I didn’t visit them in their homes.
J was another friend I would see from time to time, most often in her Manhattan apartment, which spoke of a fruitful life. I never knew just how famous J was until I saw her obituary in The New York Times. You have to be someone relatively important to have your obituary written by a third party and published in The New York Times, no less. But J always downplayed her professional success—she was a renowned animator with forty years of prolific work behind her, work that has been displayed at MoMA and the Met for its innovative significance—and I had absolutely no idea. To each other, we were simply two women, two wives, two mothers, suffering from the same horrible disease. We met to discuss the pros and cons of HIPEC surgery. She was an extremely private person when it came to her cancer, and so I was perhaps the only person in the cancer community she befriended and spoke to on a somewhat regular basis, and one of the few friends she allowed into her clouded world. She gave my children two books she had written and illustrated and an app on the iPad to help them learn the alphabet. I was shocked by her death, for it happened too quickly for me. At our last meeting, just before the summer, she didn’t look like she was going to die so soon. In fact, I told her in an email that her desire to go into hospice seemed premature; she never replied. I would learn subsequently that she died two weeks later, at the end of June, with a disease progression that astounded even her doctors. I didn’t get a chance to say a proper goodbye, which I regret deeply.
The Unwinding of the Miracle Page 19
