A photo of the author.

I wanted to publish a book before I died

For a decade, I felt like I'd die if I didn't publish my novel. Then my doctor delivered some interesting news


Leland Cheuk
February 15, 2016 5:30AM (UTC)

All my life, all I’ve wanted – above love, adventure, even helping others – was to publish a novel—one silly novel. So it was fitting that I would be told that I was dying, alone, while staring at yet another unpublished manuscript.

“Probably leukemia,” said Dr. Max Kreditor, my hematologist with the Kafkaesque name. He was calling to let me know that at age 37, despite having no prior health problems, my time had run out.

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I had written fiction more or less daily for my entire adult life. For six years in my early 20s, I worked on an autobiographical coming-of-age novel about my unhappy upbringing in Silicon Valley. Much like my adolescence, there was no plot, just a Linklater-esque fetishization of loitering in parks. The climax involved my protagonist (having shown no evidence of vocal talent in the first 200 pages) getting up in front of his high school and ripping into a savage cover of “Search and Destroy” by the Stooges. Because he was the world’s forgotten boy, get it, get it?

In my mid-20s, I worked on a 500-page picaresque about a slacker dying from a fictional and absurd disease. Eerily prescient to say the least. In this non-masterpiece, the world was dominated by an evil corporation run by a preteen who carried a wooden sword, and at one point, the protagonist was dragged through the halls of a military facility in a Radio Flyer wagon by a pedophiliac lieutenant.

Amazingly, after 10 years and 750 pages of failed novels, I didn’t quit.

Four years before my diagnosis, it seemed like I was finally making progress toward publication with my third manuscript: a black comedy about a dysfunctional Chinese-American family. The first 30 pages got me into the MacDowell Colony. Shortly thereafter, I signed with an agent in New York City. Then I moved to Manhattan from San Francisco, officially completing the entire “How to Get Published” clickbait listicle. I was convinced that I would soon slay the publication dragon.

But the manuscript didn’t sell. “Till the next book!” my then-agent wrote, like I could deliver another one by the end of the week. I was relegated to sending the manuscript into the publishing world’s version of the Deep Web: university and independent presses. I could only muster the strength to do so once or twice a year, when I wasn’t racked with self-pity. That’s where my writing “career” was when Dr. Kreditor came to collect his debts.

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Failures notwithstanding, I loved everything about writing fiction. I loved the routine, moving a story forward one word, one period, one page, and one day at a time. I loved the craft, the magical way one can apply the same set of skills and basic grammatical rules in endless permutations to create a completely distinct whole. I even loved the business-side. Unlike my corporate marketing career, publishing success could not be bought, and everything you did involved 99.9 percent rejection. I loved how we writers enjoyed nailing ourselves to our own cross, working on projects for years on end when the odds of finding an audience was, at best, tiny. I’ve always identified and empathized with society’s underappreciated artists, perhaps as a reaction against my parents’ stereotypically Asian, professional class emphasis on material success, which struck me as pathological—both a distillation and misreading of American values.

Other than my childhood desire to be an astronaut and my fantasy of being the starting point guard of the Boston Celtics, I had never wanted to be anything other than a fiction writer.

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Turned out I didn’t have leukemia. I was diagnosed with the equally deadly MDS (myelodysplastic syndrome), a group of diseases that is still often referred to as “pre-leukemia.” My bone marrow, the pistons of my body’s blood-making engine, was kaput. Because my diseased marrow was producing abnormal cells that died off prematurely, my counts were falling. My neutrophils, white blood cells that act as the body’s first line of defense against bacteria and fungi, were life-threateningly low. The bottom end of the range of a normal ANC (Absolute Neutrophil Count) is 1.5 K/mcL of blood. Mine was as low as 0.4. Without a stem cell transplant, I had months, if lucky, a couple of years, left.

My doctor at Memorial Sloan-Kettering was Hugo Castro-Malaspina. Hugo as in Victor. Castro as in the dictator. Malaspina was a famed ancient Italian family and the name of an Alaskan glacier. Dr. C (as my wife and I call him) is a man whose name does not allow him to do small things. One of the leading stem cell transplant doctors in the field, Dr. C is in his late 60s, with salt-and-pepper hair, a healthy mustache, and light-rimmed spectacles. Of modest height, he walks with a swagger of someone who saves lives for lunch. Dr. C didn’t understand my self-identified occupation.

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“I’m a fiction writer,” I told him. “I write novels. Comedies.”

“You should get them to make a movie,” Dr. C said in a doctorly manner, as if he was advising me to lose weight.

Before the transplant, he revealed that over the course of his lengthy career, his success rate had been 65 percent.

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“What is success?” I asked.

“Success is when you live,” said Dr. C.

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July 2014. Nine months after my initial diagnosis. The doctors at Memorial Sloan-Kettering had done all they could to avoid the worst case: a stem cell transplant from an unrelated donor.

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The isolation room on the transplant floor was nice enough. The furniture had a mismatched quality, as if individual pieces had been moved from room to room. An old recliner served as a guest chair. There was no writing desk, but it was safe to presume that once the “conditioning” or chemo began, I wouldn’t feel much like writing.

My mattress continually adjusted beneath my body like a tossing-and-turning bedmate. These movements were automated; the mattress was intuiting positions that would theoretically make me more comfortable. In practice, this technological “advancement” only served to make noise and keep me up at night. Sleep was hard enough to come by. Nurses woke me between 1 and 2 a.m. for vitals, then again between 5 and 6 a.m. for the daily weigh-in and blood draw from the triple-lumen catheter that had been surgically inserted below my collarbone.

Failed Novel No. 2 opened with my narrator discovering his terminal illness during a routine doctor’s visit, as I did in reality over a decade later. Perhaps we write our innermost fears, and sometimes, misfortune makes them real.

My narrator was given 30 days to live, and each day, he experienced a new health problem. First, he had a seizure.

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During my six days of high-dose chemo that wiped out my diseased bone marrow as well as my immune system, I had a busulfan-triggered seizure. All I remember is waking up to nurses trying to get me to sit up. I was irritated that they had disturbed my sleep. My conscious, post-seizure self felt no more than a little groggy, so I didn’t understand why the nurses kept asking if I was OK. Wasn’t I obviously OK? After all, what’s not OK about being in an isolation ward at a cancer center at 5 in the morning?

In Failed Novel No. 2, my narrator loses his hair in front of his former wife, and it is meant to be a poignant moment when both characters realize that they had missed opportunities to love each other.

The doctors and nurses told me the day I’d likely lose my hair. Sure enough, on July 10, I woke to bits of short hair on my pillow. Then in the shower, more shedding. My wife tried to shave my head, and we laughed at her tentativeness with the clippers. She had never shorn anyone before. She left the back of my head mostly untouched, which made me look like I was trying to grow a chemo mullet.

We laughed a lot during my transplant stay. We didn’t talk about what would happen if I were to become part of the 35 percent that didn’t make it. I made no living wills, no contingency plans. The reality was: I had produced nothing significant that would survive me. We were childless. I had a 401k here, an IRA there, but little that would make an impact on my wife’s future. For almost 20 years, my only priority was a book that never happened. If I died, it would have been like I was never here.

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My wife and I faced what was ahead, not one day at a time, but one hour, one task, until those tasks formed a routine. We didn’t know what results this routine would yield.

It was just like writing fiction.

For my wife, her routine was far more strenuous than mine. She woke at 6 a.m. to start cooking my lunch. By 8 a.m., she was in the subway from Downtown Brooklyn to the Upper East Side, a trip that often took over an hour. She wanted to be at the hospital by 9 a.m., so she wouldn’t miss the doctors on their morning rounds. After lunch, she would take the train back to our apartment to begin cooking my dinner. By 7 p.m., she’d be back at the hospital. She usually left around 10. She never looked tired.

She says that the routine helped her avoid dwelling on the worst.

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Late at night, in isolation, I couldn’t help but dwell. I had not been the most attentive husband or giving friend or generous community member. I was terrible at keeping in touch. I did not give to charities. I never sent my parents gifts for birthdays or Mother’s and Father’s Days. We’d always had a contentious relationship, and we’re Chinese, so we’ve never hugged or said “I love you” to each other. Unlike my wife or the certain, very generous lifesaver I’ve yet to meet, when I was healthy, I did not join the National Bone Marrow Donor registry. Now that I was completely reliant on others to get through each day, I better understood the opportunity cost of my obsession with the largely solo act of writing.

And yet, I had lived an uncommonly lucky life. I’d traveled across Asia and Europe. I’d achieved material comfort— was neither rich nor poor. I married a woman I love deeply. I shouldn’t have been as disappointed in my life as I was.

In Saul Bellow’s "The Adventures of Augie March," Augie, ever the believer in free will, especially the freedom not to exercise it, dwells upon what it’d be like to experience “a good enough fate.” Had Augie been a fiction writer, he would have failed like I did, but surely, he would have viewed his failure as a kind of success, a part of his journey as an Everyman lover of discovery.

I’ve never been good at looking through tinted lenses. I’ve often considered it a luxury to ascribe meaning and drama to one’s life. There’s simply too much suffering and injustice in the world for an average person like myself to ask, “Why me?”

But there I was, facing death unpublished, asking exactly that. If I had known I’d only live until 40, maybe I wouldn’t have embarked on the ascetic fool’s quest that writing is. Maybe I could have aspired to something more experiential and communal, like playing in an indie band. Maybe I could have done something more commercial, like start a company. Maybe I should have had more fun: ridden more roller coasters, played more hooky, started more bar fights.

Instead, day after day, year after year, I got to my day job two hours early and parked my butt in a nearby café to work on a silly novel.

*

They call transplant day “Day Plus Zero.”

The transplant itself lasted just a few minutes. The doctors brought in a large syringe of the donor’s healthy stem cells (an oddly yellow color, like peach juice) and shot the contents in my catheter. Afterward, my blood counts continued to decrease. The nurses charted my decline on a gridded sheet pinned to a bulletin board. Each day, I watched the nurses write new, lower numbers, like a countdown. I was, quite literally, watching myself die.

When my red blood cell count dropped below 7 g/dL of blood (normal levels start at 13.5 g/DL for men), I got a transfusion. When my platelets dropped to below 10,000 per ML of blood (normal levels start at 150,000), red flecks began to appear on my legs and the nail beds on my fingers and toes turned the color of fig skin. To prevent random hemorrhaging, I received platelet transfusions. The docs were performing a somewhat medieval miracle: poisoning me, then keeping me alive long enough for the donor’s stem cells to settle where my bone marrow had been.

Dying did not feel terrible. From chemo-caused nausea, I threw up just twice. I had diarrhea, but I’d experienced far worse bouts of food poisoning. I’d read about all the terrible things that could happen during a transplant: everything from fluid in the lungs to oral and esophageal sores that would make it impossible to swallow so that the docs had to feed you with liquid nutrition through your catheter. I was lucky; none of the worst side effects hit me. My appetite was blunted, but I willed myself to eat every low-bacteria meal, which meant the proteins were torched beyond recognition and the hospital cafeteria’s over-hard eggs had the texture of rubber vomit.

The doctors encouraged me to stay active, so on most days, I’d don my mask and gloves and walk the halls. I’d smile with my eyes at my ashen and gaunt transplant neighbors, all decades older than me. I marveled at the surreality that I, a former paragon of fine fettle, was now one of them, popping two-dozen pills daily (an assortment of AIDS-level anti-virals, anti-seizure meds, anti-fungals, and supplements).

My mind didn’t sense I was slipping away, even as the numbers confirmed that indeed I was. I was constantly telling myself I would be OK, that things weren’t that bad, that this was nothing I couldn’t get over. My mind was writing fictions in the hope that good fortune would make them come true. What is the act of living if not the day-by-day, minute-by-minute act of storytelling? We craft narratives about our past into the anecdotes we share with those we love. We store the first drafts of our futures in our minds to guide our actions and give the next day purpose. We all, on some level, do a writer’s work.

On July 13, the doctors told me my counts were moving up again. The donor’s cells had engrafted. Though my new post-transplant life was just starting and the life-threatening complications had just begun, that was the whole point: a new start.

An hour later, I checked my email, and read a message from one of the indie presses to which I had submitted my enthusiastically titled novel "The Misadventures of Sulliver Pong." They were writing to tell me it had been accepted for publication.

*

My manuscript came out of the slush, one of 10 selected out of more than 500 submissions. Two percent. Over the years, it had been rejected by a small city’s worth of agents and editors. Amid all the discourse about whether books still matter and whether Amazon is evil and whether publishing is diverse enough, we, in the world of letters, often forget that publishing at all is a minor miracle for the vast majority of writers, many times more improbable than, say, surviving an allogeneic stem cell transplant.

I’ve asked many authors recently whether they felt changed after their first book was published. Perhaps out of modesty, all have answered some version of no. Those authors might still be writing as if they’re reasonably assured of being alive to pen their sixth, seventh, or 13th book. I feel very different after my first book. When someone thinks my self-identification as a writer is vaporous, I point to a physical book. Thanks to on-demand printing, my book will outlive me. Regardless of sales figures, I’ve poured my glass of water into the ocean of literature. I have contributed something from my life that is timeless. My book may not be read by many, but it can be.

Today, 18 months after my transplant, I feel as healthy as I did before my diagnosis. I don’t know whether I’ll make it to five years, when the doctors can declare me cured. Until they tell me differently, I know I can be back into that isolation room at any time. For months, I couldn’t kiss my wife or touch children, pets or plants due to the risk of infection and toxoplasmosis. My immune system is still so compromised that I can walk outside and catch tuberculosis or measles because all of my childhood vaccines are now useless. At night, I’m haunted by thoughts of dying from a recurrence of MDS, or some other cancer-related disease for which I’m now at greater risk because I’ve been through high-dose chemotherapy. I have nightmares about new misfortunes like losing family or friends to some random rare illness or an accident for which one cannot brace. I’m writing two novels, two story collections and a screenplay, and if that sounds insane, it’s because I’m in a rush, just in case I don’t make it. As the cliché goes, I’m writing each sentence as if it will be my last. Despite all that, I’m more at peace than I’ve ever been now that I have one novel out in the world.

That may seem silly or strange, but so is life.

If I die tomorrow, my fate will have been good enough.


Leland Cheuk

Leland Cheuk is the author of the novel THE MISADVENTURES OF SULLIVER PONG (CCLaP Publishing, 2015). He has been awarded fellowships and artist residencies including one from the MacDowell Colony, and his work has appeared or is forthcoming in publications such as The Rumpus, Kenyon Review, Prairie Schooner, [PANK] Magazine, Vol. 1 Brooklyn, and elsewhere. He lives in Brooklyn.

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