Beyond this, I can do nothing to make more dominoes fall. I must accept that I have no control over the factors that will really determine whether I live or die from this disease, that whether more dominoes fall is about God, faith, luck, prayer, hope, sheer randomness, or some combination of the above. And therein lies the intersection of Josh’s science, studies, and statistics and my belief in those unquantifiable forces. If we can find the sweet spot in between those poles, I may beat this cancer yet.
Happy anniversary, darling.
21
Take Your Victories Where You Can
After my clean MRI scan in early October, my oncologist, Dr. A.C., gave me four options: (1) continue with full-blown chemo, (2) go on maintenance chemo of 5-FU and Avastin, which inhibits the blood flow to cancer cells, but can also cause blood clots and hemorrhaging, (3) stop chemo altogether and proceed to a “wait-and-see” approach with monthly CEA testing and quarterly scans, or (4) take the rather unusual step of undergoing a “second-look” exploratory surgery to visually inspect my insides in what would be the most accurate and reliable form of monitoring (better than any scan). In light of the minimal risks involved, and the tremendous amount of information to be gained through Option 4, I decided to go with a second-look laparoscopy.
That surgery happened on Halloween Day 2014, and revealed that not only was I free from visible disease within the abdominal cavity, but based on the washings, or “cytology” in medical parlance (i.e., fluid flooded into the abdominal cavity, sucked out, and then tested), I was also free from microscopic disease, at least inasmuch as such a test could tell. It was not a result I or Dr. A.C. or my surgeon, Dr. D.L., expected. We were all prepared for the cytology to come back positive, so when it didn’t, even though the results are only fifty-fifty reliable, we were all thrilled.
As Thanksgiving approached, I saw both Dr. A.C. and Dr. D.L., and they both hugged me, beaming. Dr. A.C. told me, “Good job,” as if the outcome was something I had determined, and in that moment I felt his pride in me, not unlike a father’s pride in his daughter. Implied in the hugs and the smiles from my doctors was a genuine delight in the victory we had won together, a self-satisfaction on their part with their technical skills and their compassionate humanity; a happiness, tinged with wonder, and a humble and grateful pride on my part—in the resilience of my body, a resilience that had by then allowed it to withstand the collateral damage of twenty-five rounds of chemotherapy and two surgeries. While I have often thought of how horrible and depressing it must be to be an oncologist, surgical or otherwise, I saw in my doctors’ joy then how certain victories make it all worth it. With Stage IV disease, you take your victories where you can.
Dr. D.L. told me that what surprised him most about my surgery was not that my cytology had been negative but rather the remarkable absence of scar tissue, which had allowed him to see everything so clearly. Another person receiving the same HIPEC surgery (given the same history of a perforation at the time of the initial colon resection) would have likely developed significant amounts of scar tissue that would have made exploration difficult, forcing Dr. D.L. to maneuver the laparoscope every which way to see.
Scar tissue, also known as adhesions, is the frequent cause of bowel obstructions. Because the tissue can be as hard as cement, it also makes future surgeries, particularly laparoscopic ones, much more difficult. I had always understood that scar tissue starts to form the moment one’s insides are exposed to air. Dr. D.L. said this is generally true. So why, I asked, had I not developed scar tissue? He said, maybe the postsurgical chemotherapy had inhibited the formation of scar tissue. But to tell the truth, he just didn’t know. I think if he and I could unlock the mystery of why I escaped this common occurrence, we would both be quite famous and wealthy.
As I look at my paunchy stomach littered with ugly scars and deformed forever, a stomach that aggravates me to no end as it makes it so difficult for me to fit into my old clothes, I have to give it an affectionate pat—yes, I am proud of my body, this body that for some unknown reason resisted internal scarring, this body that despite everything it has been through remains fit and capable of keeping up (for the most part) with the twenty-something-year-old girls in their stylish tank tops and hip-hugging yoga pants at my gym. I am proud of my mind and spirit. I am proud of what I have achieved. I am grateful to have the doctors I have. I am grateful to have Josh, my girls, and the incredible support that surrounds me.
And yet, I understand that this is but a brief respite, an opportunity to regroup and strategize. I don’t truly believe, notwithstanding the cytology results, that I am disease-free. Metastatic disease does not give up so easily, and I feel that there are inactive microscopic cancer cells inside of me.
Paradoxically, now that I am as clean as medical science can determine, returning to chemotherapy doesn’t seem a viable option, as traditional chemotherapy attacks only active cancer, i.e., cancer that is multiplying. I am concerned with inactive cancer at this point, or cancer cells that are still in their infancy.
So, I set out to find new options for myself. I went to see Dr. Raymond Chang, a famous internist who specializes in nonconventional treatments. He is an MD, not a PhD or naturopath or other person claiming the title of medical doctor without legitimacy. I have met a couple of cancer patients who speak glowingly of him. Plus, my oncologist knows and likes him and even recommends him to his patients who are interested in integrative or alternative treatments. I read his book Beyond the Magic Bullet, which I thought was legitimate enough. In particular, I liked his strong emphasis on relying on human studies, as opposed to in vitro or animal studies. Based on all of the above, I was willing to go see him and pay the $875 an hour (which is not covered by insurance)—I try not to think of the money! (Incidentally, I’ve long since stopped taking the Chinese herbs from the Chinese medicine man because I didn’t discern any noticeable effect, and I realized that I had become one of those people who was desperately grasping at straws without having done the research I needed to be comfortable.) In addition to vitamins and supplements and the like, Dr. Chang proposed alternatives like metronomic chemotherapy (i.e., delivering traditional chemo drugs at lower dosages but more frequently), hyperthermia (i.e., shooting the body with heated microwaves on the theory that the heat will kill tumors), and various non-FDA-approved drugs that are used in other countries and that he is able to import through the compassionate-use loophole in the federal laws. He did give me studies that accompanied every option he proposed and encouraged me to do my own reading. After some research and much thought, I’ve determined that the only thing I’m comfortable doing in the way of integrative and alternative therapies is vitamins and supplements (with limitations). I don’t really believe those things will make much of a difference, but I think they will not harm me, so I’m willing to give them a try. I asked Dr. A.C. and Dr. D.L. their opinions, and they agreed with my conclusions. In fact, Dr. A.C. said the other stuff was “snake oil.”
It’s hard to avoid the talk of diets—whether vegan or alkaline or low carb—when you have cancer. Someone will inevitably say, You should juice or switch to a plant-based diet or avoid all sugars. People have asked me privately my opinion about diet, and I will state it here for the record. I tried a plant-based diet when I was first diagnosed—again one of those desperately grasping at straws acts—and I absolutely hated it. It’s not that I love meat—in fact, I don’t eat that much meat, and when I do it’s mostly fish and poultry and organic at that—but I can’t give up eggs, milk, butter, and cheese. Barring irrefutable evidence that animal products cause cancer, I’m not willing to give up certain things. The same is true of sugars and carbs. Food is a quintessential part of the human experience. The enjoyment of food is such a big part of life, and to give that up without the irrefutable evidence that might justify the sacrifice is a compromise in the quality of my life that I am unwilling to make. I believe in eating as much unprocessed food as po
ssible, lots of fruits and vegetables and whole grains, with some meat and fish and the occasional dessert. I generally avoid red and smoked meats (although I do eat pork once in a while—we Chinese love our pork!). Everything in moderation, as they say.
Before my surgery, after I had asked online whether anyone had ever continued with full-blown chemo even with no evidence of disease (something my oncologist had favored at the time), a woman in one of my support groups sent me a private message. M is a researcher extraordinaire. She told me I might want to consider something called the ADAPT protocol, a treatment developed by Dr. Edward Lin out of the University of Washington that is currently in the Phase II clinical trial process. There are only three phases of testing before a drug is approved by the FDA, and Phase III is generally a rubber stamping, meaning much of the evidence in support of the drug therapy is established in the first two phases.
M sent me a link to the clinical trial at clinicaltrials.gov as well as links to the published journal articles discussing the results of the trials from 2007 through 2012. I read, and I made Josh read. The results in Phase II have been astounding—ninety-two-month survival rates for metastatic colon cancer for 40 percent of the cohort; this for a disease that typically sees an average of about twenty-four months. The protocol involves taking Xeloda, the oral form of 5-FU (which I’ve had all along), and Celebrex (an anti-inflammatory drug that is used to treat arthritis). Dr. Lin describes these drugs as working together to awaken the cancer stem cells and then kill them, akin to poking a beehive to bring out the bees and then spraying them with a pesticide. Dr. Lin likes to get patients to the point of no visible disease or as little visible disease as possible before starting this protocol, so it seems perfectly geared to someone in my position. I was persuaded.
I sent emails to both Dr. A.C. and Dr. D.L. before my appointments with them with links to the trial and the articles, letting them know that I would expect to hear their opinions. Both doctors think this is a reasonable next step for me, especially since they know that I’m not good at doing nothing. If I didn’t do this protocol and I had a recurrence, I would kick myself a million times.
I have learned throughout this cancer journey that when the options aren’t so appealing, you have to go out there and make new options. As much as I acknowledge how little control I have in my life, I do try to control what I can. Then I can let everything else go and let the universe do what it will.
22
The Cancer Is in My Lungs
It seems that the cancer wants to live, too.
In late December comes awful news.
I have about twenty 2- to 4-millimeter spots—also known as nodules—in my lungs. We are fairly certain they are cancer. The CT scan also shows that my right ovary is enlarged, which could be indicative of metastatic disease. If these are indeed cancer, then I am no longer curable, and my prognosis is, assuming I respond to chemo, “several years.” That is the long and short of it.
No one went with me to see Dr. A.C. I went alone, and received the news alone. Which was probably for the best, as it allowed me time to cry alone, as I walked out, dazed, into a city all dressed up for Christmas. The thought of leaving my children and husband is unbearably painful. How will they go on without me? Who will pay the bills? Who will go to Costco to buy everything they need? Who will cook for them? Who will take the kids to school? Who will make their school lunches? Even as I think about going back on FOLFOX and enduring the horrible neuropathy, I have similar questions about how I and my family will get through the days, weeks, months, and years to come. And my parents…the thought of them watching me die breaks my heart anew. My sister told me she felt like we were back at square one. No, I told her, it’s worse than square one, because now it’s in my lungs and I’ve already tried chemo regimens that haven’t seemed to be that effective. In addition to having already tried the two leading chemotherapy treatments for colorectal cancer, I am tired now, so tired of fighting, so tired of having any kind of hope and being painfully disappointed. I am so tired.
My instinct is to plan. I need to record for Josh how all our bills are paid every month so he will always keep the appropriate accounts funded. I need to figure out who is going to help raise my children, to make sure they take piano and swimming lessons, to make sure they learn to eat foods from all over the world, to keep the fridge and pantry stocked with the foods my husband and children love. I need to make memory books for the girls. I need to tell people how much I love them and let them know how they have affected my life. I need to extract promises from people to help look after my girls when I’m gone and for those who knew me best to tell my girls about me, to fill their ears with stories of me throughout all the phases of my life; I need those people to share with Mia and Isabelle what mattered to me most and the Chinese-rooted values that I hope my girls will learn. I need to take Josh and our girls to Disney World and the Galápagos Islands so we can walk among hundred-year-old tortoises. I need to make a caramel soufflé like the heavenly one I ate with Josh in Paris last February. I need to scratch Josh’s head just the way he likes it and to snuggle with my girls as much as I can. There is so much I need to do.
I know that soon I will regain my footing and I will get up and fight, that I will research and advocate for myself, that I will endure the treatments. But I also know that in order for me to suck the marrow out of what remains of my life, I need to acknowledge that I am now planning for what is an inevitability. I must do all the things I have outlined. Josh has made me promise to fight, not to give up; he still clings to hope. But the most I can hope for now is time.
The sense that we ever had control over any of this seems nothing but a mockery now, a cruel illusion. And also, a lesson: we control nothing.
Well, that’s not exactly true. We control how good we are to people. We control how honest we are with ourselves and others. We control the effort we have put into living. We control how we respond to impossible news. And when the time comes, we control the terms of our surrender.
23
From Darkness to Strength
The day I got the horrible news, I learned of a laser surgery performed in Germany and London that is designed to deal with up to one hundred lung mets. Although the surgery has been performed for ten years, it is not available in the United States because the FDA has not approved the equipment. I asked my oncologist what he thought of the surgery and what his lung tumor board thinks. He says that my tumors are too small for the surgery, that a surgeon would not be able to see them to destroy them. What kind of war is this in which the lethal enemy won’t show itself? Cancer fights dirty.
Dr. A.C. does have a patient he is sending to Germany to have it done, but he said that the surgeon would be able to feel her tumors. I might get a second opinion about this. The surgery costs eleven thousand euros per lung. Yikes!
I vowed when I started writing my way through this calamity that I would endeavor to be honest about who I am and what it is for me to battle cancer, that I would strive against my very human egoist tendencies to prop up some persona of myself as perpetually inspiring, strong, or wise. Why was this so important to me? In part because if this writing were to become the principal means by which my children would come to know my innermost thoughts and feelings after my death, I wanted them to see my real self, a self that, in addition to experiencing many moments of joy, gratitude, and insight, was often tormented by fear, anger, hurt, despair, and darkness. I also made that promise because I disliked tremendously those bloggers who always presented in the face of a life-threatening illness images of pumped fists and unending positivity and determination. To me, such portrayals were disingenuous, an insult to the intelligence of readers, and above all, disorienting and potentially harmful for those like myself who were newly diagnosed and felt more darkness than light. I wanted to detail and explore that darkness, to let others out there who I knew experienced a similar desolation and lonely darkness know that
they were not and are not alone. There is a natural, intuitive fear of darkness; people who are gripped by it are ashamed to speak of it, while those who are free of it for however long wish to run from it as if it were a contagious plague. If the cost of my brutal honesty about my darkness is a highly unflattering picture of me that repels, so be it.
In the weeks after I received the news, I fell into a darkness that was a thousand times worse than anything I had experienced before. I managed to get through Christmas Day, and the full force of the darkness hit me the day after. It left me broken and crumpled on the ground, my rage-filled screams ringing in its wake and a husband and children utterly shocked at the madness they had never thought possible in this woman who was supposed to be their steadfast wife and mother.
Yes, Josh has seen me angry and despairing before, but never like this, for this frightened him; this made him afraid for his own and his children’s safety, because I was like a deranged animal, devoid of reason, hope, and light. I yelled and hurled things, not at Josh or the children, but at the heartless gods who would do this to me and, in the absence of those gods, at the painfully unjust cruelty that is an inherent part of the human existence. Why me? I demanded of the gods. Hadn’t I already borne my share of trials and tribulations? Hadn’t I already known enough suffering? Hadn’t I lived a good and moral life? The absence of any divine answer arising from the chaos of my thoughts made me even more crazed. Even the gods cower from me. Cowards.
Through heaving sobs, I begged Josh to let me go, to let me leave him and our girls forever, for all I wanted to do was flee, get on an airplane bound for unknown parts where I could die alone with a setting sun. In the state I was in, I was a completely unfit mother and wife, an unfit human being for that matter. I tried to convince Josh that my leaving would be for the best, that he is still a young, handsome man with a successful career and he would be able to find someone to replace me easily, that any woman would love our girls, that the girls are so young they would grow to love their new mother easily enough. I wanted not to fight, but to flee to a place where I could die. I told Josh I didn’t want to live like this, with this diseased body that had failed me one time too many, with the specter of death looming ever closer; that this was no longer a life worth living, that whatever good that would come from now on, whatever laughter, whatever joy would be poisoned by the cancer, and I didn’t want a life poisoned by cancer. I wanted to start over. I wanted to find escape and rebirth in death.
The Unwinding of the Miracle Page 15
