My dad still looks pretty healthy. His thick black hair is increasingly peppered with silver strands and his wide, broad face only gently creased with wrinkles. He walks with a limp, the hobble of his right leg compensating for its less-than-ideal rotation in his hip socket, but that’s the only sign he might not be in perfect health. His mind is still sharp, he plays guitar daily and reads voraciously — recommending books for me to check out. I have promised him that I will read "Infinite Jest," and while at first I was worried I might not finish it in time to discuss it with him, now I feel less urgency, and the book sits gathering dust on my bookshelf. I refuse to use David Foster Wallace as my timekeeper for the end of my dad’s life, because if the doctors haven’t set a countdown clock, why should the rest of us?
When I first started working as a technical writer for an immigration law firm almost two years ago, I feared that the work might be boring. Or worse, legal. Then I learned that I would be translating the research of doctors, medical researchers and basic scientists — many in the biomedical fields — into plain, layperson’s English, and hazy memories of high school biology came flying back. Or rather, they didn’t. I had to Google such basic questions as, “Where is the pancreas?” “What is a pulmonary embolism?” and “What do the four chambers of the heart look like?” Knowing so little about the subjects I needed to write about, I had to educate myself in biology and human anatomy at a rudimentary level, in order to render these subjects convincingly to someone without a background in science.
As my job drafting referee letters for the visa applications of foreign medical graduates progressed, the human body came to life in a way it never had while I passed notes and daydreamed through my high school science classes. In the intervening years, I had studied literature, earned my Master of Fine Arts in Creative Writing and worked to become a professional storyteller. In fact, that’s why I was hired — early in my job, my boss was frustrated by continued obtuseness in my medical writing, and she grilled me: “What’s the story here? Is the great conflict that repairing heart aneurysms is dangerous? That this patch closing the outside of the myocardium engenders dangerous complications? Or that no one had ever thought to look for a better way?”
I dug deeper, calling my clients and asking them to walk me through their complex surgical procedures, to explain the tools required to replace heart valves or suture leg arteries. Their words animated a mysterious new sci-fi galaxy where I now live each day at work: the world of blood cells, organs and digestive juices flowing through our bodies. Some of our clients work at a miniscule level of detail — tracing the interactions of proteins binding with each other within the nucleus of a single cell — while others look at whole organ systems, and create devices that have direct clinical applications for treating any number of diseases.
The most common shared topic across the work of my clients is cancer. It is omnipresent, all-pervasive — cancer is everywhere, and so is cancer research. Explanations of a new cancer type begin with blanket statements like, “Last year, [a giant number of people] were diagnosed with [this type of cancer], and [another surprisingly high number] died from it.” For example, I now know that skin cancer is the most common type of cancer, non-small-cell lung cancer is the most common and aggressive sub-type of lung cancer and pancreatic cancer is the most deadly, since it is virtually untreatable if the tumor can’t be surgically removed.
As more and more of my cases became “writing about cancer,” Cancer with a capital C came to life like an epic Star Wars battle for the ages: Cancer is Darth Vader, the Force gone evil, doctors are the powerful but flawed Jedi knights and “the Force” is the body’s mysterious immune system, which regulates (or in the case of cancer, is unable to recognize and regulate) cellular proliferation and termination. Yet my emotions were largely untouched, as “Cancer” became a disembodied conceptual enemy, like “Communism” was during the Cold War.
My aunt had succumbed to non-small cell lung cancer several years earlier over a very fast and dramatic few months, which had been tragic for our family and shocking in its speed — almost so shocking that I didn’t identify her with the disease, and saw her death as a sudden catastrophe, like a car crash or a heart attack. I remained bolstered by a terribly naïve sense of invincibility. Cancer, great, yeah, let’s treat it and give all of these researchers green cards, I thought, as I drafted letter after letter detailing the genetic, cellular and biological mechanisms of “tumorigenesis,” the abnormal growth of cells in a particular region of the body that eventually turn cancerous.
The week before my father told me he was diagnosed with Stage 4 kidney cancer, I started the case of a pathologist who specialized in clear cell renal carcinoma — the most common form of kidney cancer. My dad and stepmom told me about his case of renal carcinoma over brunch that weekend at a restaurant on the Upper East Side and ordered me not to cry in public. When we went back to their apartment across the street, he gave me his set of house keys — he was moving up to their condo in Connecticut full-time to get treated at the Yale Cancer Center. While my stepmom was going to keep working and commuting up to Connecticut on the weekends, could I please hang onto a set of their keys in case anything happened and she needed to stay up there? What would I need to do if she had to stay in Connecticut? Oh, get the mail.
As we carried his guitars downstairs in the elevator, my dad looked at me and smiled. “Oh Kim, stop crying, it’s not the end,” he said. I felt like a maudlin character who had accidentally wandered into a Sartre play. Of course people die, of cancer or of other things. Why on earth are you so surprised?
I helped them pack up their car and while they offered to drive me to the subway, I demurred and waved them off, feeling as if my father were driving off to the suburbs to dig his grave and climb right in. I took a cab back to Brooklyn, and started reading up on Stage 4 renal carcinoma with a distant metastasis (it had metastasized to his pelvic bone, but not to the lymph nodes, spinal cord or brain), as if I were preparing a case for work.
I looked at statistics — less than 50 percent one-year survival rate and less than a 10 percent five-year survival rate — and started looking at clinical trials to see what treatments were most recommended. If I were discussing my dad’s illness at work, I would have used phrases like, “Renal cell carcinoma, while easily treatable in its earliest stages, paints a grim prognosis by Stage 4 — with inoperable cases having a dismal survival rate of less than a year.” This was not, as they say, good news.
I called my best friend from high school, who is in medical school and who speaks medical-ese better than the language of emotions, and we agreed that it was probably not a good idea to have a lot of hope. Then I went to my writing group and told my boyfriend, and in his safe arms, no other words were necessary.
The hardest writing I’ve ever had to do for money was writing the case for the renal carcinoma pathologist during the two months after I first learned of my father’s diagnosis. All of the things that make writing exciting and powerful and interesting for me — the great leap of empathy into the topic I’m learning about, the research, the drama of what happens if the protagonist (in this case, our pathologist and my father) isn’t successful in their fight against Darth Renal Carcinoma — threatened to make me dissolve into a little ineffectual puddle of desperation on my office floor. Not to mention the fact that I shared my office with two other writers and had firmly decided to tell no one at work about my father unless (or until) his disease forced me to change my physical work set up (i.e. take time off or work remotely). Except for his two tumors, his health was outstanding, so he was slated to go in for a super-intensive week of high-intensity chemotherapy in December. The nuclear bombs of cancer treatment, but he could handle it, we all hoped.
As I studied the pathologist’s work, I was struck by the way he learned things about the behavior of renal cell carcinoma, by studying the tumor’s “microenvironment” — i.e., the cells composing and directly surrounding the primary tumor in the kidney. I began to imagine my father’s kidney like a coral reef, populated with all manner of different types of cells, which each contributed to the functioning of kidney cells, and his tumor as a lumpy offshoot of coral that had grown in a different texture, shape and color. Apparently, in the microenvironment, immune cells identify, latch onto and disable tumor cells, like trapping ghosts in "Ghostbusters," while tumor cells hijack other cells and use them for their own nefarious devices — like how zombies infect humans in "The Walking Dead."
Thanks to working on the pathologist’s case, while my dad was getting his week of in-patient Interleukin-2 pumped through him, I imagined the battle in his tumors’ microenvironments playing out like Jedi attacks on the Death Star. I later learned that IL-2 was a biologic, a new type of drug to spur the activity of the immune system, but it is usually administered on an in-patient basis in the ICU due to its horrific side effects. In this case, my partial knowledge of the science, at a molecular level, didn’t help me feel better — it only made the experience worse. It was all far too immediate.
Immunotherapy is a fairly new type of experimental, targeted treatment for cancer and is being piloted in many major cancer treatment centers across the country. In the spring, after two rounds of the nuclear weaponry of IL-2 that ravaged every system in his body but whose side effects departed as swiftly as they descended, my dad’s oncologist got him enrolled in an immunotherapy study that he could participate in on an outpatient basis.
Once every three weeks, he goes for a personalized infusion of a serum concocted for him from his own blood, in which certain antibodies (I think) are activated in order to be able to recognize his body’s tumor cells (or something) and are re-injected back into his body for about an hour or two. He has no side effects; he drives himself to and from treatments, goes home and eats dinner and still has about 97 percent of his hair. He actually looks healthier, now, almost a year after his diagnosis, than he did before. Although his doctors did not advise surgical removal of either tumor, he’s had some targeted radiation, and his leg is getting stronger. Both tumors are smaller than they originally were. They are not gone, nor will they necessarily ever be. But he has reached a tentative status quo.
I don’t know any more than this because he and my stepmom don’t ask their doctor follow-up questions. I suppose that’s their right, to be agreeable but not inquisitive; they do what she says, and want nothing more to do with it. I know who his doctor is, but I don’t know which clinical trial it is, which immune system cells are being activated or what the previous research has said about these interventions. I don’t know what his current duration of survival is predicted to be or how confident his doctor would be in that prediction. In fact, I only know that his clinical trial is immunotherapy — rather than traditional forms of chemotherapy — from a lot of extremely researched and careful guesswork.
But while at first, I wanted to know everything — which cells, which proteins, and which drugs — now I don’t push it. I never told them what I read about survival rates for Stage 4 Renal Carcinoma, and I don’t plan to. My good friend’s husband is an oncologist, and she told me that he “never gives patients survival rate percentages, because those are from clinical studies, and they’re an average. Every patient’s case is different.”
I read some clinical studies on IL-2 when he was taking that, and according to one study, there was a 3-5 percent chance that it would cure him completely, approximately the same rate as acceptance to Harvard. So I started to hope that my dad would win the Harvard acceptance of cancer treatments and be one of the lucky ones. But disappointed hopes are far worse than worst-case scenarios not quite fulfilled. So I’ve mainly stopped reading about renal carcinoma. I am mainly just grateful that he doesn’t have to suffer from the excruciating side effects of traditional chemotherapy.
In my job navigating through the vast terrain of clinical cancer research, I learned how to animate every biological function within the human body in epic narrative proportions. Yet now all I want is to surrender my humanity to the process, seeing the tumor microenvironment as a shifting battle of cells signaling through viscous liquid, quietly watching the cells resolve their conflicts without further explanation.