Home is where I am now. And, in a sense, home is where I will always be, even after I am physically gone from this world.
39
Believe
I love Roger Federer. For those of you who don’t know, he is, most would say, the greatest male tennis player of all time (GOAT!). I’m more of a Federer fan than I am a tennis fan. It all started when I met Josh, who was and is a lover of all sports (other than hockey and soccer), but tennis seemed to throw him especially into alternating periods of gut-wrenching anxiety and euphoria, and Roger Federer especially so. He would watch Wimbledon or the Australian Open matches on tape delay and absolutely despair when Federer dropped a set. I didn’t know anything about Federer back then and thought Josh was just crazy; how stupid to care so much about two men hitting a tiny ball back and forth. I’d secretly go online and find out Federer had won the match—Josh hates watching sports with anyone who already knows the outcome—and then tell him lovingly, “It’s going to be okay, honey.” Back then, Federer was in his prime and racking up Grand Slam titles at an astounding pace as he sought to surpass Pete Sampras’s Grand Slam record of fourteen. Josh, as do most people, loves to watch dominance, to marvel at human physical excellence, and Roger Federer was a prime example of the incredible feats that the human body is capable of. My feigned interest in basketball and football disappeared after we got engaged and then married, but my love for Federer persisted.
After our wedding, in the fall of 2007, Federer’s physical decline began. Josh and I would watch matches together with greater stress as the odds of his victory decreased with the passing of the months and years. When Federer sought to tie Pete Sampras’s record at the 2009 Australian Open, we got up at 3:00 A.M. to watch the finals against Federer’s archrival, Rafael Nadal, the other arguable GOAT. It was a disastrous match for Federer; he crumbled under the pressure of history. Our household of two was in mourning that day. And yet, I’m pretty sure that Mia was conceived that night—as they say, out of the ashes of defeat…
When I was seven months pregnant with Mia, we forked over the big bucks to go see Federer play in the fourth round at the U.S. Open on Labor Day. We sat in the front row, right behind the service line. You could see us on TV all day long. I was in ecstasy to have my tennis God so close.
Federer would make it to the finals of that U.S. Open, but he would lose to Argentinian Juan Martín del Potro. Josh went to the finals while I stayed home to watch. He would call me during the commercial breaks to give me his impressions from the court. I would tell him what John McEnroe was saying on TV. I had become as crazy as he.
Federer, however, would go on to win more slams. The last, number 17, was the 2012 Wimbledon championship. The morning of my colonoscopy on July 7, 2013, the day I was diagnosed with colon cancer, Novak Djokovic lost the Wimbledon final to the hated Andy Murray; Federer had been eliminated in an earlier round. How apropos. Josh had watched the match early that morning, before he came to the hospital to be with me as I was wheeled away. We were in California, which meant even more of a time difference. Wimbledon barely registered to me that year.
The following year, Federer again made it to the Wimbledon finals. As I had so many times before, I watched in my apartment, glued to the TV and yet throwing a blanket over my head during the high-pressure moments. Even though I knew it was ludicrous, I told myself that if Roger Federer could win another slam despite becoming an old man in tennis terms, then I could beat cancer. Of course, at that point, my cancer had not metastasized to my lungs. Federer lost in a five-setter to Djokovic. I was devastated, for him, but mostly for myself.
In the years that followed, Federer didn’t win. He made it deep into many Grand Slam tournaments, quarters and semis but no finals. Injuries began to plague him as he moved into his mid-thirties. I stopped watching. I told Josh it was game over for our beloved Federer, that it was time for him to retire with grace, that I didn’t want him to be humiliated by these younger guys. Josh never gave up on him, though. Never. Josh believed as I have never seen anyone believe. He kept telling me that as long as Fed could go deep into a Grand Slam tournament, he still had a chance.
Federer cut his 2016 season short by six months to recover from knee surgery. No one, including him, was expecting much at the Australian Open, the first Grand Slam of the year. Even so, he looked good in the rounds leading up to the finals. I still wasn’t watching. Josh questioned whether Federer should even strive to make the finals because it was looking more and more likely that he would meet Nadal, at whose hands he had suffered so much defeat, there; Nadal had long ago gotten into Federer’s head. Could Fed handle yet another defeat? Could we? I told Josh I didn’t think I could bear to watch another Federer defeat, and to Nadal no less. It would simply crush me. Josh got up early to watch the finals on tape delay, with me rising soon thereafter (after I had, of course, looked online to see that he had been broken early in the fifth set—not good at all; most assuredly he was on his way to losing). But I got up anyhow to support my devoted husband, with the slimmest bit of hope in the final outcome. Josh confiscated my phone when he saw me trying to sneak another look at a live update. So I really had no idea what was about to happen.
Somehow, some way, with the momentum against him, Federer dug deep and held serve and proceeded to break Nadal to level the set, held his own serve easily again, and then broke Nadal again. He won the match soundly shortly thereafter. Josh and I, our hearts racing, were jumping up and down, dancing for joy, hugging, kissing, high-fiving. The kids would definitely have thought we were certifiably crazy, but we had locked them in our bedroom at the far end of the apartment and turned on nonstop Monster High. In his postmatch interviews, Federer spoke of how sweet this victory was, given that it had taken him so long, given how hard he had worked, given his age, given all the naysayers.
Josh never stopped believing in Federer. He has never stopped believing in me, either, never. Even when I’ve said that it’s game over for me, that I am dying. I told him that this past birthday would be my last. My emphatic statements and the disheartening scan results no doubt have made him question his own belief, but he still held firm. I told him he was delusional, that he just couldn’t accept my death, that he had to tell himself I still had a chance for his own sanity. He would look at my skin and watch how I move about and he would say, You’re not dying. He would say, As long as you are still playing, you still have a chance.
Federer won, and I felt like that was a sign in late January, that I had to actually start listening to my husband. Horror of horrors! But what else was I supposed to do exactly?
40
Pain
For a week, I’ve been trying to write, but nothing comes out. Nothing coherent. Nothing good. I am in chaos, and so there can be no good writing under the circumstances.
I have been unable to persuade Dr. Y., the radiation oncologist, to move up radiation treatment on my spine. He didn’t perceive any immediate danger; he said the tumor seemed to be growing into my bone, rather than toward my spinal cord. I suppose he was right, since I made it to the radiation treatment on June 5 without becoming paralyzed beforehand. In fact, the pain seemed to ease in the interim. I was shocked and attributed it to my conscious effort to sleep with proper alignment. I had three radiation treatments on consecutive days. The treatments themselves were uneventful, quick and easy enough. It was the aftereffects I hadn’t quite expected. Pain. Excruciating, throbbing pain in my upper right back, the kind of pain that had me sitting up at night, desperate to rip that part of my body out. I turned to oxycodone, which relieved the pain but had me feeling washed out the next day, very sleep-deprived, nauseated and vomiting multiple times in twelve hours. Apparently, it is normal for the pain to get worse before it gets better after radiation. Of course, no one told me this. I thought many times that if I couldn’t manage the pain, I would have to go to the ER—that’s how bad it was. Fortunately, the pain did get better after
almost a week and is now nearly entirely gone.
But now I have pain elsewhere. Pain in my left butt and leg that has steadily worsened over the last few weeks. I’m convinced I have a new met in my lumbar spine.
I’ve been experiencing random vaginal bleeding as well—sorry if that’s too much information, but why should I hide that since I talk about everything else? Of course, I’m worried it is a second primary cancer. It took weeks to get an appointment with a gynecological oncologist at MSK, who took some Pap smears and did a uterine biopsy. While she couldn’t say for sure until the results were back, she thought my bleeding issues were more likely caused by the location of metastases from the colon cancer. I don’t know what would happen if I had a second primary cancer. The idea of it seems unbearable to contemplate, but in truth, everything I’ve endured during these past four years at one point seemed unbearable to contemplate.
Finally, the tumor next to my belly button has been bothering me a lot again. I can literally feel it now, probably because of my drastic weight loss. The current study drugs robbed me of the ability to taste for many weeks, which caused me to lose a lot of weight, since I lost interest in food and ate solely to not be hungry. I can taste now, although nothing tastes right, so my appetite is still not where it once was. Additionally, the vomiting from the opiates hasn’t helped.
Back to the tumor. I play with it, rubbing it, imagining it, measuring it. I use my thumb and forefinger to determine its length and then hold those fingers up against a ruler—roughly two centimeters, just as the last scan report said. I touch it, caress it, worship it, almost as if it were a rabbit’s foot, a manifestation of God, to whom I can pray for salvation. Sometimes it feels like it’s answering my prayers, like it’s calmed down, shrinking even. Sometimes it feels enraged, big and furious at me for trying to sway its will. In the end, it controls my mood. When it is calm, I am calm (optimistic even). When it’s angry, I am angry (and scared and sad). But more important, I know it controls me and whether and when I live and die.
I scheduled another round of scans for the middle of June. The scans will likely be very bad if pain and just my general physical well-being are gauges. I’m trying to prepare myself for the worst. But I don’t know how to. I don’t know what the next steps would be, if there would be next steps for me. Instead, I struggle with being okay with dying. I tell myself that I’ve lived a good life. I tell myself that I am not afraid of dying, that I am so tired and in so much pain, I want to die at this point. Most of the time this is true, but I am not fully there yet. I haven’t found the peace I so desperately want, the kind of peace in which I would be okay with a bad scan, knowing that death is coming that much sooner. Peace is all I really want. The question is, How do I find it?
41
Death, Part Two
I was Daddy’s little girl, his favorite, his precious one, his gold nugget. He would tell anyone and everyone exactly that, in Vietnamese or Chinese. It was embarrassing, especially in those teenage years, but I loved him, too, even if he was often too nosy and annoying in so many other ways. Perhaps it was because I was the child most like him, inquisitive and interested in the world and its people. Perhaps in me he saw all his own potential and dreams never realized—the intellectual, the fearless world traveler, the moneymaking professional. In him, I saw a man who loved me beyond measure, who would spend hours in traffic driving me to and from the airport, high school competitions, study group sessions, and the orthodontist, who believed that I could walk on the moon if I so chose. Sometimes, I felt somewhat bad for my older brother and sister. He loved them, too, of course, but it just wasn’t the same. (It was widely known, however, that my brother was my mother’s favorite and my sister was my grandmother and the uncles’ favorite, so I didn’t feel too bad.) During one of our many car rides together, I asked my father, “Don’t you think that it is not right for you to love me more than Older Brother and Older Sister?” He took his right hand off the steering wheel and held it out to me, its fingers stretched. “Look at my hand,” he ordered. “You see my fingers? Are they even? No. It isn’t possible to love your children the same.” And that was that. My father, the sage Chinese philosopher, had spoken.
Anyhow, knowing that he loved me as much as he did, I felt incredibly sorry for him as he stood helplessly by when I left for college three thousand miles away from home and then on my various adventures to far-flung places, the kinds of impoverished places that we had risked our lives to escape. He was and is a worrier. He would sit morosely watching me, shoulders drooped, as I packed for my next adventure, wringing his hands and running his fingers through his virtually nonexistent hair. Sure, I was nervous about my travels, somewhat afraid of what I might encounter, but mostly I was excited and enthralled by the promise and possibility of newness and all the things to be seen and experienced. I was off to have fun, to grow and learn, to be changed and challenged; my father would be left behind at home, worrying. His life centered on me, and that center was leaving. I swore then that I never wanted to be the one left behind, even if I were to have my own children, that I was and would forever be an intrepid traveler and adventurer.
It seems that with the latest bad scan results, I will continue to make good on that promise I made myself so long ago. I will be the one to die young. I will be the first among so many family and friends to embark on the greatest adventure of all, the one that involves traveling beyond this life into the next. Were the choice mine, I would stay longer, to watch my children grow up and to age with my husband, to bury my parents, to see more of this life that I have loved so much. But the choice is not mine. It has never been mine.
I am busily packing my bags now. I am making my lists, leaving my instructions, putting in place my final estate-planning documents. I am making my final memories, saying my goodbyes, telling everyone I love them, writing my last words. I am noting not just all the people I will miss but also the things of life I will miss. I will miss the simple ritual of loading and unloading the dishwasher. I will miss the smooth patina of my cast-iron skillet, brought on by cooking countless meals. I will miss making Costco runs. I will miss watching TV with Josh. I will miss taking my kids to school. I will miss this life so very much. They say that youth is wasted on the young. Now, as I approach my final days, I realize that health is wasted on the healthy, and life is wasted on the living. I never understood that until now, as I prepare in earnest to leave this life.
Sleep no longer matters. I tell myself as I race against time to make the flight, before the pain settles in, before my mind becomes addled by opiates, that there will be time enough to sleep later. Sadly, this time it’s not just my father who sits helplessly by; it’s also Josh and my children, my mother and siblings, cousins and so many friends. I’m sorry for that. I’m sorry to leave it to others to pick up the pieces. It is a selfish act, perhaps unknowingly brought on by a selfish promise I made so long ago. But believe me when I say that this is not of my conscious choosing.
I know that soon I will stand on the brink of something extraordinary, something greater than the human mind can understand. I have far greater faith in the belief that there is more than this life than I do in a God. I know with every fiber of my being that there is an afterlife. I keep thinking about all the people I have met who have died since my diagnosis four years ago—Debbie, Carlyle, Rachel, Colleen, Chris, Jane, and so many more—and I realize that they taught me how to die, that I will follow in their footsteps, that they and others in my family wait to greet me and help me make the transition. And that makes me happy. When I was pregnant with Mia and nervous about giving birth, I consoled myself with the thought that billions of women have done exactly the same thing for millennia, and so there should be no reason why I couldn’t do it and do it well. Similarly, I think now of all these people I know who have died and the billions of people who have died over the millennia, and there is no reason why I cannot also embark on this rite of passage and do it well
.
It is my absolute goal to die well, to die at peace, without regret for the life I have lived, proud and satisfied. Why do we always assume that the ideal life is a long one? Why do we assume that it is so awful to die young? Could it be that the ones who die young are better off? Could it be that death offers greater wisdom and joy than this life and those who die young are indeed lucky in their ability to attain those gifts sooner? Perhaps these are simply the musings of a person desperately trying to come to terms with her own early death. And yet, I can assure you that I feel no desperation (other than the desperation to finish all the preparations before it’s too late), that if anything I feel almost total and complete peace.
I do not know if peace comes to all or just to those who seek it, to those who rage or to those who surrender, but over the months of 2017, peace came to me.
42
Preparing
Mia is in third grade, and Belle is in first grade. As school started, parents came together and engaged in some version of the game of one-upmanship, as each tried to “one-up” the others, to wear the cloak for Best and Coolest Summer. Trips to France, Spain, Italy, blah, blah, blah. Of course, I played the game, too. A part of me needed to play, to feel like despite everything, I could still give my children a semblance of a normal childhood and a summer that could rival anyone’s. “Mia and Belle went to South Carolina to see their grandparents, which put them in the path of the total solar eclipse. They loved it. They’ll never forget the experience,” I bragged. Even as I said the words, I wondered why I bother at this stage of my life, why I engage in the stupid, vapid games, why any of it matters at all.
The Unwinding of the Miracle Page 26
