More than skin deep

The nights are the worst.

When Norm Apter is lying in bed, eyes wide open, no sound but his own heartbeat, it’s as though the entire world has gone to sleep and left him behind. At night when everything is still, the cancer seems to cover him like an extra blanket. This is the time for What ifs and Who knows; for honest reckonings and swan dives into his murkiest fears.

Ah, but the days. When the distractions are plentiful, it’s easier to ignore the physical discomfort and hold the uncertainties at bay. There are classes to plan for, people to meet with, laughter, exercise, motion.

Apter doesn’t let the nights rule him. For eighteen months he has been living with advanced-stage melanoma, the most aggressive, deadliest form of skin cancer. He has endured surgeries, procedures and experimental drugs that have left him scarred, fatigued and, at times, too ill to leave his apartment. He has faced the assault with a disarming candor, and also with a scholar’s curiosity — a need to make connections, to know the cause and effect of things.

This spring, the 39-year-old professor of Asian Studies returned to the classroom to teach two courses, one that he designed from scratch during his medical leave. He’s done so while taking a trial drug that has shown promise in certain patients — “promise” being that trickiest of words, encouraging yet maddeningly vague.

Here is why the classroom is so important. It’s concrete. It’s present. It’s where he belongs.

Apter makes no apologies for being a Yankees fan in Red Sox country. He was born in New York, the son of parents who came together in that most Manhattan of ways: they met while working at Macy’s. But the Apters did not want to raise their children in the city and moved to Connecticut, then Seattle, before finally settling in Virginia. Apter attended The College of William & Mary, where he was drawn to Asian studies. He went on a class trip to Beijing in his junior year and began studying Mandarin, continuing his Chinese language studies his senior year. After graduation he spent a year teaching English at a Chinese university.

He earned a master’s degree in East Asian Studies at the University of Virginia, and pursued a Ph.D. from the University of California at Los Angeles. His dissertation research on the history of social-relief programs in China brought him to the nation of Taiwan for long stretches, which included intensive language study.

Through a friend he met a young Taiwanese woman, Eurydice, who would help him improve his Chinese communication skills. Their teacher-student relationship evolved into a friendship, which blossomed into romance. In 2003 the two were married in a small ceremony in Virginia, and later, in 2004, at a grand wedding banquet in Taiwan. “Eurydice has a sprawling group of relatives and friends, and I was the only representative on my behalf,” Apter remembers of the Taiwan wedding, adding with a smile, “I was certainly on my own.”

The couple settled in Los Angeles, where Norm worked as a teaching assistant and continued to write his dissertation. He taught four courses at Pepperdine University during the 2008-09 academic year.

“As a visiting professor, of course they stuck me with 8 a.m. classes every day,” he says. “But the reward was being able to drive up the Pacific Coast Highway every morning with the sun coming up over the Santa Monica hills. What a great place to be.”

The mole appeared on the back of his right leg, about two inches above the knee. It was dark but not exceptionally large, and while Apter was concerned he also had practical reasons for not getting it examined.

His Pepperdine gig was a temporary position, and just as he entered the job market the economy went into free-fall. Apter was left without a teaching post for a year, and that meant no health insurance. When he landed the position at Clark for the beginning of the 2011 school year, he and Eurydice poured themselves into making the move from Los Angeles to Worcester that spring.

“Getting estimates from moving companies, packing everything up — it was a stressful time,” he recalls. “We were a bit nervous [about the mole], but it didn’t occupy central space in our thinking. We decided that as soon as I got started at Clark and my health insurance kicked in, I would go to a doctor and get it checked out.”

Over the course of the summer, the mole grew and changed shape, then became ulcerated. “If I’d known the characteristics, I would have realized this was a harbinger for bad news,” he says.

In early September 2011, a dermatologist excised Apter’s mole and sent it off for a biopsy. On September 9, he was diagnosed with melanoma.

Apter describes what some call the “mad rush,” the stretch of time between the initial diagnosis and the start of treatment: “Everything is confusing. You’re getting different reports and dealing with different experts.” He was cautioned not to consult the Internet, where worst-case scenarios often prevail, though he did read some disturbing statistics about survival rates.

Early scans revealed the cancer had advanced to Stage 3; it has since progressed to Stage 4. The original tumor appeared modestly sized on the surface yet extended deep into the thigh, like an iceberg, and had spread to the femoral basin of lymph nodes in his leg. He underwent a nine-hour surgery at Brigham and Women’s Hospital where two sets of lymph nodes were removed, leaving him with seven-inch scars in his thigh and abdomen. Two drains were installed to release the lymphatic fluid, leaving Apter weakened and walking with crutches.

Apter was forced to take two weeks off from teaching, but he had prepared by pre-taping lectures that were shown to his students. When he returned to the classroom, he wore sports pants and loose shirts to cover the drains — “I didn’t want to freak out my students,” he says — and persevered throughout the semester, despite the drains frequently clogging, which caused his leg to swell and left him so exhausted that he was forced to lecture sitting down.

In January 2012, Apter began a trial drug called Ipilimumab (he notes that traditional chemotherapy and radiation typically are not effective against melanoma) through the Dana-Farber Cancer Institute in Boston. He received two infusions with little trouble, but by mid-February the worst of the side effects laid siege, inflaming his stomach and lower intestine so severely that he had to be removed from the drug and put on a course of steroids to combat the infection.

In his darkest moments, Apter had formidable allies at Clark. He credits History Department Chair Amy Richter for compassion and creativity in accommodating the scheduling challenges that his periodic absences created.

And then there’s Paul Ropp.

Apter came to Clark to replace the retiring Ropp, who had been the face of Asian Studies at the University since 1985. The two have become close, with Paul and his wife Marjorie hosting Norm and Eurydice for dinners, taking them on hikes and tours of local sights, and introducing them to a wider circle of acquaintances. When Eurydice got her driver’s permit, Marj hopped in the car to teach her the secrets of navigating through Massachusetts’ unforgiving traffic.

“My personal situation only catalyzed the relationship,” Apter says. “Paul and Marj have provided us amazing support and assistance, which has been crucial for us, having come to a new place and not having any roots here.”

Ropp, now a research professor, emerged from retirement to fill in when Apter was forced to take leave from the classroom. He feels a kinship with the young professor, whom he had a hand in hiring.

“I understand Norm’s passion for teaching,” Ropp says. “You spend years building an expertise in a subject area, and you have a hunger to share it with students. So it’s no surprise that Norm showed up in the classroom in hospital garb with a drainage bag on his leg, ready to teach.

“The way he’s handled this has been an inspiration. He’s faced mortality with more grit and grace than anyone I’ve ever known.”

Melanoma travels in the blood with no discernable pattern or clear destination. Where it will take up residence in the body is as impossible to predict as a lightning strike. Apter went through a series of CT scans, the last one in June 2012, that were clean, although he was warned the cancer had a 60 to 80 percent chance of returning.

“I adopted a mentality that I would assume I’m okay until someone tells me otherwise. To a certain extent I adjusted mentally to my pre-cancer state. With each passing day, each passing week and month, I developed a sort of confidence. Of course, that’s very convenient until you get bad news.”

The June scan raised one potential red flag: a spot in his thigh that doctors speculated might be an enlarged blood vessel. On August 10 he underwent a more conclusive PET scan, and the results were devastating. The cancer had spread to other lymph nodes, invaded several glands, muscle tissue and two vertebrae, and settled in the pancreatic head. The tumors had grown 35 percent since they were last monitored.

Apter had gotten used to managing his expectations. He is a realist, a historian by training, who dwells in facts. Still, this was a blow.

“My immediate reaction was to have a panic attack in the room,” he recalls. “My heartbeat sped up, I couldn’t breathe and had trouble processing what I was being told.

“I didn’t cry, I didn’t get angry. But I couldn’t contain the uncertainties. I just didn’t know what I was dealing with and what the implications were. You’re climbing a cliff, trying to get a foothold so that you can look around, assess the situation and try to move forward.

“This is an unstoppable beast that if untreated will continue to grow. It’s like something has attached itself to your body and it will move through you with no feelings. All the things I tried to do — purify my diet, get exercise — didn’t really matter in the end. That was a sobering moment.”

He began a new trial drug — so new it’s nameless — that he describes as “genetic mutation targeted therapy.” Apter explains that clinical cancer trials go through three phases, with Phase 3 the closest to earning approval from the Food and Drug Administration as an accepted treatment with clear trends and known side effects. This trial was in Phase 1.

“I’m a guinea pig,” he says. “At this stage you’re going by anecdotes — how did it work for this person or that person. It’s hit or miss.”

A PET scan in late November offered a mixed bag of results. There were some new tumors, several of his current tumors had grown, some stayed the same size and others had shrunk. A follow-up scan in December revealed more of the same, and Apter was pulled off the clinical trial.

As of this writing he was gearing up for a new trial, but the exact course would rely on consultations with his oncologist and the head of Dana-Farber’s Early Drug Development Department. He notes that a four-week “washout” of the old drug from his system is required, and since coming off it his energy level is stronger, but his “lumps and bumps” — subcutaneous nodules — are growing at a faster clip, and some may need to be removed.

To this day, he insists, the only real discomfort he’s experienced has come from the treatments, not from the disease itself.

Apter is tall and lanky, with an open manner and an easy laugh. He talks about his health travails as calmly as he discusses his love for the jazz of Thelonius Monk and the books of Hunter S. Thompson. He can allow himself to be absorbed by his many interests (“I don’t find myself constantly living and breathing the cancer,” he says), but these days he’s more inclined to cut through the clutter of incompetence. “I find I have less tolerance of movies that I’m not into,” he grins. “If it hasn’t grabbed me, why am I wasting my time on it?”

The return to the classroom excites him. He’s teaching two courses, a survey of modern East Asia from 1600 to the present, and an upper-level course — the one he designed while on leave — focusing on the social and economic evolution of China since 1949.

“I’ve missed the engagement and discussions with the students,” he says. “Doing reading and research, even in an area of interest like China, is not a good replacement. I’ve tried to attend department meetings, but there’s nothing like being in the classroom.”

A former runner, he now exercises on the elliptical machines in the Kneller Center, and tries to get a sound sleep, which he values not just for rest, but for replenishment.

One of Apter’s favorite authors is Christopher Hitchens, the barb-tongued British intellectual who died of esophageal cancer in December 2011. Hitchens, an avowed atheist, wrote a book called “Mortality,” a collection of columns about his experiences as he approached death. Apter, who describes himself as a “died-in-the-wool secularist,” refers to the book as his bible.

“Hitchens writes about something he calls ‘living dyingly.’ You want to be living and vital, but you also have to be realistic about where you stand. When you’re at the Stage 4 level there isn’t a cure; you are going to have this in some capacity for the rest of your life.”

He talks freely about death and legacy, and the need to define the cancer on his own terms. There is a clear-eyed equilibrium at play here, even as he discusses the challenges that he and Eurydice have faced with in-vitro fertilization. They had put off trying to conceive a child until they were settled in Worcester, but the cancer diagnosis came so fast they were forced to bank Norm’s sperm at a Boston hospital. His doctors have deemed natural conception too risky due to the experimental drugs Norm is taking.

There are hurdles to pregnancy involving health and cost, but the couple hasn’t dismissed the possibility.

“Ultimately, it was Eurydice’s decision that if I’m not around she’d be okay with raising our child,” he says. “She’s been adamant from the beginning that it’s what she wants.”

He could be forgiven for asking that most cosmic question: Why me? But he never does.

“When I was feeling healthy I never asked, ‘Why not me?’ when other people had a disease. It makes no sense to ask the ‘Why me’ question now. Nobody knows.

“I’ve given up trying to figure out how this came about. I have no history of melanoma in my family; I don’t know if I was exposed to too many UV rays as a kid, or if there have been contributing environmental factors. I firmly believe there’s a scientific explanation, and it might be a perfect storm of things that led to it.

“I don’t like the description that a person ‘battles cancer.’ Cancer battles you, and you do what you can to survive. For me it’s a matter of managing what I can control, but also being in tune with the things I don’t have any say over. At 39 years old, there’s nothing special about me. I’m simply coming to grips with these things at roughly half the age of when a normal person does.”

In early November, Norm Apter hiked into the Joshua Tree National Park in Southern California on a two-day jaunt with a friend. The only other creatures joining them among the rocks and brush were a few mountain goats and birds.

As darkness fell and the moon rose over the desert, Apter and his buddy struggled to set up the tent (“It hadn’t been used since the Clinton administration,” he laughs) but after two frustrating hours they tossed it aside and crawled into their sleeping bags. Despite the wind and the biting cold, they were comfortable under layers of clothing.

Nature put on its finest show for them. Bands of light shimmered on the horizon, while directly above the stars blinked, but not like they do in the city where they fight the disruption of man-made glow. Here, they sparkled like thousands of sequins sewn onto a black velvet curtain, an artwork of elaborate constellations.

“I’d never seen a sky like that,” Apter says. “It was the kind of thing that puts you back in touch.”

It was a good night.

This story was originally published in CLARK Magazine, spring 2013.