“Yes,” she always says.
Belle is too young to understand that Mommy is sick, yet I believe that some part of her ageless spirit understands what’s going on. When Belle hugs me now, I feel as if she’s giving of herself to me—her hope, her joy, her life force.
When Belle started seeing ghosts, I remembered a poem I had read in high school, “Ode on Intimations of Immortality,” by the Romantic poet William Wordsworth, in which he expressed the idea that children are born “trailing clouds of glory,” with the innocence, purity, and knowledge from having just come from God. It is the process of growing up, and the corrupting influence of society and life, that strips them of all their innate angelic goodness, what Wordsworth called their “hour of splendor in the grass, of glory in the flower.”
And what about us adults, who are long past our moments of trailing clouds of glory and our hours of splendor in the grass, of glory in the flower? What of those of us who have been indelibly (and suddenly) scarred by our broken dreams and who might be swallowed by our own bitterness in the face of illness and impending loss? What are we to do? Wordsworth is not without advice for us:
What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendor in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;
In the primal sympathy
Which having been must ever be;
In the soothing thoughts that spring
Out of human suffering;
In the faith that looks through death,
In years that bring the philosophic mind.
Indeed, we will grieve not for what is lost but find strength in what remains behind, through the bonds of human sympathy born of common suffering, and in our faith in something greater than we can conceive of. And no doubt, finding strength in what remains behind includes rediscovering the magic and wonder of our powerful children and letting them help us walk through our darkest hours.
5
The Warfare, and the Weapons
An irony in all this is that before this lousy diagnosis, I was in the best shape of my life, working out five days a week. Exactly three weeks after the surgery, I was running again on the treadmill for twenty minutes. As I ran, I grew angry at the cancer. I started yelling at the cancer cells. “How dare you betray my body! How dare you threaten to take me away from my husband, babies, and all who love and need me! I will seek you out and I will destroy you!” I shrank to the size of the cancer cells and I began strangling them with my bare hands, reaching into their very DNA. Then I envisioned the chemo empowering me with a sword, with which I slashed them to a billion pieces, and then a gun. But nothing was as satisfying as crushing them with my bare hands.
Chemotherapy will start quickly, as there is reason to believe that the sooner the chemo starts the more effective it will be. I will be on a regimen called FOLFOX, which consists of three drugs, one of which—oxaliplatin—is very powerful. Common side effects: neuropathy (numbness and tingling, including extreme sensitivity to cold in the hands and feet), nausea, diarrhea, fatigue, weakened immune system, mouth sores, hair loss. Yes, hair loss. Ugh! So I will be shopping for a wig.
I will go in every two weeks. Oxaliplatin will be infused into me through a port (which will be implanted in my upper chest) during a two-hour period. I will then go home with a pump, through which the other two drugs will be infused into my body during the next two days.
The doctor also highly recommends switching to a plant-based diet and banning refined sugars. He says there isn’t any good science to support the proposition that such a diet will reduce the risk of cancer or recurrence, but I figure it can’t hurt. The most important thing the doctor told us is that there is every reason to be hopeful. My age, physical shape, the fact that all visible signs of cancer have been surgically removed, and advances in chemo are all factors working in my favor. To believe, to have faith in the face of self-doubt and uncertainty, is definitely the most difficult part of dealing with cancer. But tricks of the mind are not my forte. The life I have lived has taught me to be a somewhat ruthless realist.
6
Deals with God
I didn’t grow up with any organized religion. The closest I came was going through the motions of my mother’s ritualistic offerings to the Buddhist gods favored for generations in our ancestral Chinese villages, and to the spirits of my ancestors on the first and fifteenth of every lunar month. I stood before the fruit—and, on special occasions like Chinese New Year, the poached chicken, fried fish, and rice—holding the burning incense, and asked the gods and my ancestors for things like straight A’s and getting into the college of my choice and, of course, health and wealth for my family.
During my great-grandmother’s and grandmother’s funerals, when I was ages ten and twenty, I also unthinkingly imitated the chanting, bowing, and kneeling of my parents, uncles, aunts, great-uncles, and great-aunts, all garbed in their white robes and headdresses. I didn’t understand the philosophical underpinnings of the rituals, and my mother couldn’t explain them to me the few times I bothered to ask. No one in our family went to temple other than maybe on Chinese New Year, and no one read any religious texts. Our quasi-religious practices were very much rooted in popular cultural and mythic traditions of village life dating back hundreds of years, and not in the esoteric teachings of Buddha and his disciples, which would have been more akin to the Judeo-Christian practices of the West. At school I couldn’t help but absorb some of the teachings of those religions, since biblical allusions permeated nearly every poem, play, short story, and novel we studied in English class, and as I learned in history class, Judaism and Christianity shaped the course of Western civilization.
So I grew to believe in a little bit of everything, developing my own spiritual and philosophical approaches to life. I believe in my ancestors and that their spirits watch over me. And I believe in God, not perhaps in the image of God depicted in the Bible, but an omniscient and omnipotent being nonetheless. I think God is beyond what my little, limited human brain can fathom, but perhaps something my limitless soul can just begin to grasp in my moments of utmost clarity, moments that the Buddha would describe as the outer edges of enlightenment. For simplicity, I called all these unseen forces God.
I talked to (and yelled at) God a lot growing up, especially on sleepless nights, during which I angrily demanded answers to my questions, which pretty much boiled down to Why me? I of course have this question in common with every human who has ever lived. But we all make it our own, don’t we? In my case, Why was I born with congenital cataracts? Why was I forced to live a life limited by legal blindness, forever cursed to not realize my full potential? After all, I could have been a great tennis player, a spy for the CIA, or a legendary diver like Jacques Cousteau. Why could all my cousins and friends drive and I could not? Why were all those pretty but brainless girls always surrounded by the cutest boys while I was shunned because of my thick glasses? Yes, all the things that hurt so much growing up with a visual disability became fodder for the angry tirades at God. God had a lot to answer for.
I listened closely for his response. I searched with my head and heart for the answers to my questions. I found them eventually, over the course of many years. I grew to embrace a belief in universal balance, something the Chinese very much believe in, as evidenced by the idea of yin and yang (e.g., man and woman, earth and sky, sun and moon, good and evil). In the karmic order of the universe, all things will return to equilibrium, and there will—indeed, there must—be balance.
So I made a deal with God on many of those sleepless nights. “Fine, God. If you’re going to throw this crap at me, I demand to be compensated. I want the balance of my life to be restored. For everything that is ba
d—and you would have to agree that a visual disability of this magnitude is pretty bad—there must be a good. So, I want to name my ‘good,’ my compensation for all the shit that you are putting me through. I want to find the greatest love possible in this world. I want to find someone who will love me until the end of my days with an uncompromising and unparalleled love.” That was the one-sided deal I struck with God again and again.
I suppose I was like most other teenage girls, my head filled with romantic notions as I read Barbara Cartland novels and Harlequin romances. My father forbade me from reading any of what he called in his broken English “I love you” books, so I hid their trashy covers behind white Chinese calendar paper, and he left me alone to dream about my Mr. Right—there are certain benefits to your parents not being able to read English. Of all the things I could have demanded as part of my bargain with God, I chose love because love was unattainable. Finding love seemed out of my control, totally dependent on timing and fate. It wasn’t like scoring the perfect report card, which could be achieved through individual will and hard work. Mostly, though, I thought love to be unattainable because I believed I was unlovable. I mean, who would ever want me, as physically defective as I was? Who would ever willingly agree to be hampered by my limitations? What desirable guy would want to be forced to drive me around, read menus for me, help me down stairs, be precluded from couples sports like tennis, have his family and friends stare at the geeky girl with the thick glasses? No one, I thought.
But God accepted my deal!
He brought tall, (kind of) dark, handsome, and brilliant Josh into my life. As unlikely as it was for this Waspy good ol’ boy from the South to walk unsuspectingly into the office of this immigrant girl from Vietnam with her screwed-up vision on the forty-third floor of a posh skyscraper in lower Manhattan all those years ago, the forces of the universe (a.k.a. God) made it happen. I know that many people never find the kind of love Josh and I share, a love that was tested and strengthened from the very beginning by terrifying challenges (not unlike the life-threatening challenges that face us now). From the start, I always thought Josh had the kindest and most generous heart that a human being could have (as flawed as we both are), and I tried and still do try to fiercely protect his heart from anybody and anything that threatens him. It is the least I can do for this man who loves me so abidingly, this man who makes sure my water bottle is always filled and makes me go to bed when I’ve fallen asleep on the couch, this man who has always read menus to me like it was the most natural thing in the world to do, this man who loves me just as I am.
But I can’t protect him from cancer and all the bad stuff that is beyond my control. I can’t shield him from his now constant fear of life without me. I can’t take away his sense of total helplessness. I can’t promise him that I will win this war. I absolutely hate what this cancer is doing to him. I hate how it makes him cry and rage and despair. I hate cancer more for what it is doing to Josh than for what it is doing to me.
Ever since the diagnosis, fear for Josh and my loved ones seems to live in every molecule of my body. Why did he sleep so much over the weekend? Could he have cancer? What about the wrist pain and indigestion he’s complaining about? I look at my children with the same fears. Does Belle have brain cancer because she lost her balance that one time? Does Mia have cancer because her poop looked unusual the other day? Cancer is so insidious that it attacks your every waking thought. It’s not a disease so much as it is the enemy of existence, come to turn our bodies against us. Whatever modicum of security I once felt is completely shattered. If cancer and bad shit struck once, they can and will strike again. I know it.
So I lie awake at night now with the voices in my head screaming these questions, wondering what horrible thing will happen to me and my family next. And I find myself making another deal with God, going back to my long-ago ideas about the balance between good and bad. In a world where I have no control, what choice do I have but to talk, scream, rant to, and beg of God? I tell him, “If you’re going to do this shit to me again, if you’re going to give me more shit to deal with in my life, fine. I can handle it. You know I can. But my husband, my children, my parents, my siblings, everyone I love—leave them alone. Dammit! Leave them alone! Do whatever the fuck you want with me, but don’t you dare touch them!”
A woman in a support group told me that my deals with God are my form of prayer. I never thought of them that way, since I’ve always been so adversarial with God. But prayer or deal, he’s answered and kept his end of the bargain once before. I obviously can’t tell God to do anything, and there are obviously certain inevitabilities in life, like illness and death at a ripe old age, but God knows what I’m talking about, and I hope he holds up his part of the bargain this time around, too.
7
CEA, PET, MRI…
As previously noted, my life is numbers now. Probabilities, data points, expectancies. But when you have cancer of the gut, perhaps no number more governs your sense of well-being than the number that reflects the level of disease in your blood. Your CEA, it’s called. That stands for carcinoembryonic antigen, which is a fancy term for a specific protein released by tumors, especially those found in the colon and the rectum.
When your CEA drops, the human impulse to hope makes you feel better. When your CEA rises, it can make you feel even more acutely than usual just how much your path might be starting to diverge from the path of the living.
Four months after diagnosis, my CEA was 19.8. This reflected a less than 1-point drop during the second month of chemo, whereas it had dropped 6 points during the first month. Despite everyone on the colon cancer forums and support groups saying that the CEA is a notoriously unreliable tumor marker and that it can go up during chemo, I was upset. In part, I was upset because I’m an overachiever and I like to get the A+, the perfect 100. When I had gestational diabetes, I was obsessive about getting my glucose levels to the optimal numbers through diet, exercise, and then insulin injections, and I delivered two very healthy and appropriately sized babies into this world.
But mostly, I was upset because I was convinced the CEA level not going down fast enough was suggestive of the “burden of metastatic disease.” I asked to speak to the oncologist after I got these results. He took a few hours to call me back, so I texted my UCLA surgeon (who wasn’t even technically my doctor anymore), and he called me within minutes. He said that obviously, we want to see the CEA lower, and that for my and Josh’s peace of mind, I should have a PET scan. PET scans involve the introduction of glucose into the body combined with a radioactive tracer. Cancer cells consume the glucose, so the radioactive tracer lights up with the metabolic activity produced by the cancer.
I should pause here to mention for the benefit of other cancer patients that a good number of institutions (including Sloan Kettering) do not believe in PET scans (at least for colon cancer), on the theory that CT scans are more effective and that PET scans are more likely to produce false positives. When I went to get my third opinion, at Sloan Kettering, I was told that not only do they do solely CT scans but they do them only after treatment is completed (unless there are symptoms that would prompt earlier scanning).
My oncologist agreed with the UCLA surgeon. He told me to come in the following Monday for another CEA test, and based on those results, we would proceed with the PET scan.
For a week, I mulled over my 19.8 CEA and let it fester. It got me down. I had a few crying episodes, which is unusual for me these days. Josh played our song (Joshua Kadison’s “Beautiful in My Eyes”). He had sung it to me at our wedding reception. I sobbed hysterically, thinking back on that day full of promise and glorious possibilities, when we made vows about staying together through sickness and health but had no fucking clue what was in store for us or what it’s like to weather true sickness—we still don’t fully understand, although we certainly understand better than we did that day. I fixated on thoughts of Josh findin
g comfort in the arms of another woman as he dealt with the stresses of an ailing wife, à la John Edwards. I don’t think that Josh would cheat on me at this stage, but you never know what grief will do to a man.
Let me pause here to address the issue of Josh and another woman. He and I have talked candidly about Josh remarrying if I don’t make it. I affectionately call the hypothetical woman the Slutty Second Wife. I understand that if I die, Josh will need companionship and my girls will need a mother figure, and I’m okay with that. But I will state here for the record and to get this off my chest, any woman who encroaches on our relationship while I am still living will have to answer to me. And to her and the Slutty Second Wife (if she is not the same person), I promise this—if you screw with Josh and my children, either while I’m still alive or after I’m gone, if you find a way to get around my ironclad estate planning and take assets from my children into your grubby little hands, if you otherwise harm any of them, I will haunt you from the afterlife and I will hurt you.
Where were we? Oh, it was a rough week waiting for the next CEA test. When the day came, I had blood drawn at 11:30. The nurse-practitioner emailed me the results at 3:30: “Did you hear the good news? Your CEA is 1.8. It’s normal!” I couldn’t believe it. Normal? Is it possible to have such a dramatic drop in one week? Possible yet improbable, I suspected. I went back in to see the doctor that day. He said he was suspicious of the results and was having that blood sample retested. And since I was already there, I should have more blood drawn for yet another CEA reading. So I had blood drawn again at 4:30. The CEA on the retest came back at 17.8—how can a lab screw up so bad? The CEA on the second blood sample came back at 16.5. I told the doctor, yeah, great it’s lower, but how can there be such a discrepancy in the CEA of the same person within five hours? He had no satisfying response—just the unreliability of CEA, and we shouldn’t hang our hats on it.
The Unwinding of the Miracle Page 3
