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Globe Magazine

The enemy of unknown origin

Most cancer treatments are targeted to where the disease starts. But what if doctors don’t know?

Andy Martin

THE FIRST TIME I SAW KRIS KONO in a DJ booth, it was Valentine’s Day 2009. She was spinning for a big crowd of girls at Machine and had a huge smile, even as she fretted over equipment problems. I’d known her for only a week, and she’d called earlier that day to invite me to the club. She was putting my name on the list, in case I wanted to come and bring a friend.

My pal Michael and I skipped the line and headed downstairs to the thumping music and pulsing lights. During a break, they were auctioning off a date with Kris. I asked Michael if he had any money. A hundred bucks later, she was mine. It was a ridiculous bargain for the hottest DJ in Boston, as Kris would often remind me.

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After the date (dinner and a dog walk at the Arboretum), Kris sent purple and white orchids to my office and a YouTube link to Billy Fury singing “I Think You’re Swell.” She was hilarious, tall, and beautiful. She kept rows of Matchbox cars on the shelves in her kitchen and a disco ball sparkling from the ceiling fan, and she had cool Buddha statues everywhere. She liked loud, upbeat music, eating Greek cherry jam from the jar, and playing fart apps on her iPhone for my nephews. Her only flaw seemed to be the Derek Jeter doll perched by her TV set. But her Dad had been a big Yankees fan, so she came by it honestly.

Kris Kono, at left, and partner Beth Healy at a Pride weekend event on June 11, 2010.

Steve Basara/SierraSky Photography

Kris Kono, at left, and partner Beth Healy at a Pride weekend event on June 11, 2010.

When Kris started having mild stomachaches that summer, she was pretty low-key about it. She switched from dairy to soy. She kept a food journal, and we tried going vegetarian. After a while she saw a doctor. The X-rays showed a small mass pressing on her right ureter. They did a biopsy. We figured it was all precautionary.

But it was more complicated than that. On March 9, 2010, Kris had surgery at Beth Israel Deaconess Medical Center to remove the mass. Late that night, I was standing by her bed in the recovery room when one of the surgeons came by. He told me about all the stuff they took out — the ureter, a fibroid, and some other suspicious things — then said: “It is cancer. So you’re going to want to see an oncologist.’’

I heard myself say “It’s cancer?” He nodded and talked some more. He didn’t seem alarmed. I looked down at Kris sleeping peacefully.

After an unhelpful follow-up visit with the other surgeon, we started reaching out to everyone we knew with some oncology expertise and got an appointment at Dana-Farber, the famous cancer hospital in Boston. But the problem was, we didn’t know what kind of cancer Kris had.

The analysis of the mass by Beth Israel suggested it could have started in the pancreas or the upper gastrointestinal tract. There was a chance, though slimmer, it started in either the urinary or gynecologic tract. The test seemed to rule out the colon. The diagnosis was vague and troubling at once: “Adenocarcinoma of unknown primary.”

***

ABOUT 200,000 PEOPLE a year learn they have cancer when a metastasis shows up — a tumor that’s spread from disease elsewhere in the body. Doctors can often figure out pretty quickly where the cancer started — most commonly the lung, breast, colon, or prostate — and the treatment is targeted to that particular form of the disease. But for around 60,000 of those folks, the doctors can’t pinpoint the cancer’s origin in any of the usual ways, making it difficult, if not impossible, to treat. That’s cancer of unknown primary, or CUP.

When Kris got sick, there was very little on the Internet about CUP. But every study that turned up seemed to have the same name on it: J. Scott Nystrom. A doctor in the oncology department of Tufts Medical Center, Nystrom has been studying this mystery disease for more than 30 years.

“One of the difficulties in treating CUP patients is that their presentation is atypical,’’ says Nystrom, 68. If a doctor suspects breast cancer but the mammogram comes back negative, it’s hard to get past that. “To treat a patient absent that knowledge is very difficult for oncologists to accept,’’ he says.

Nystrom looked at Kris’s reports, examined her, and said, “I bet they gave you all kinds of tests and didn’t find anything, right?” He was exactly right. Everything had come up negative. Nystrom sent Kris’s tissue samples to a California lab for gene-based testing, to determine the probability that the cancer started in one of 15 sites. At least half the time, the findings result in a change of diagnosis and treatment, Nystrom said. He’s tested male patients — at least one a smoker being treated for lung cancer — and discovered they actually had breast cancer.

Someday, knowing where a cancer starts won’t be necessary; as gene testing improves, doctors will be able to find a patient’s particular gene mutation and prescribe a drug to turn it off. But for now, finding the cancer’s origin is usually still key.

Unfortunately, the test would still leave questions for Kris. Her highest rating was 40 percent — for colon cancer. Meanwhile, over at the shiny new Dana-Farber building, a young doctor said their lab had the answer. They thought it was a gyn cancer, probably endometrial. It somehow seemed like good news.

Kris believed in positive thinking. She was just 45, strong, had played tennis for the University of Connecticut, didn’t drink, never smoked. She was ready to jump on this thing. But first she had to wait. Days and weeks ticked by while doctors weighed whether to do chemo or surgery first. By late April, the pain in Kris’s lower back, radiating down her leg, was getting worse. She was antsy.

Finally, the Dana-Farber doctors decided to do a full hysterectomy, on the hunch they’d find the cancer there or in the lymph nodes. Kris was very trusting, maybe because she was a health care professional herself, a physical therapist at New England Baptist Hospital. So she agreed. Nystrom, whom we continued to consult, wasn’t sure she needed it, but said he couldn’t argue against it either. We started building a Zen garden in Kris’s front yard and making plans to move in together.

The surgeons were practically high-fiving at the end of the multi-hour marathon. They removed everything they’d planned on and got as much as they could of the tumor growing insidiously down her sciatic notch. They had to leave some of it behind for fear of damaging the nerve, but everyone hoped chemo and radiation would take care of it.

For months, Kris made cancer look easy. She shaved her head in the backyard and would cheerfully head off in morning traffic for treatments, then sit for hours while the bags of cocktails that looked plain as water dripped into her veins. But Kris felt lucky — lucky to be alive and to be in Boston, with access to all this care. And we loved her Dana-Farber oncologist, Dr. Alexi Wright, who was 38, serious, and smart.

On Pride weekend, Kris put on her gold high-top sneakers and shiny green Adidas jacket. She spun Lady Gaga and the Black Eyed Peas for 15 hours over two days. Nobody would have guessed she needed to take steroids and pain meds in order to stand for so long.

Kris withstood chemo amazingly well. But radiation, which isn’t terrible for everyone, was a different story for her. For seven long weeks, she went nearly every day to those zapping sessions. They radiated her backside, to try to get the sciatic tumor, and then pointed the rays at her midsection. She missed some of our Provincetown vacation that summer for it. She’d spend long weekends there with me and our dogs, biking and relaxing at the beach, and then take the ferry back home, dutifully following a course of treatment that was like frying under a tanning lamp. Only the damage was mostly on the inside.

Once, when the pain was out of control, I went with her to ask the radiation doctor, really, is this how it’s supposed to be? Level-10 pain, crying, and sleeping for hours every day? “Let’s try to move forward, shall we?” was the chilly response.

One morning in August, Kris and I met with Alexi to talk about the latest scans. Much was the same — tumors a little smaller; a decrease in fluid in her abdomen. But tiny lesions had shown up on Kris’s liver, and the small spots on her lungs had grown by several millimeters.

“What’s my prognosis?” Kris nonchalantly asked, the only time I remember her posing the question. “How long do I have?”

Alexi, in perfect professional doctor tones, said that when cancer shows up in these places, “we start to think about life in terms of months and years — not decades.”

In the months to follow, Kris would go into Dana-Farber every week or two, with me, her mother, or her sister, always excited to hear something good. But the news stayed stubbornly the same, and Kris’s leg pain was growing worse. Frustrated, I launched back into research mode. With CUP, the odds were slim this was a gyn cancer. It was far more likely to be GI, probably colon or pancreatic. One night I broached the subject with Kris. She had already come to the same conclusion.

It was harder telling Alexi we wanted to shift gears. Everyone at Dana-Farber was convinced it was gyn, but Alexi was willing to rethink it. She talked with colleagues and repeatedly brought Kris’s case to the tumor board for review. Ultimately we settled on a compromise — chemo that would cover both gyn and GI cancers. If that didn’t work, she’d switch to a chemo for colon cancer.

After all the negotiating, I hated to even ask about our plan to spend New Year’s in Paris: “Will the new chemo mean we can’t go to Paris?” Alexi was adamant. “You are going to Paris.”

The East Coast was snowbound through Christmas, but somehow the skies parted and we got out of town. Kris tucked a black foldable cane in her backpack but rarely needed it. She bought fun hats, ate pain au chocolat whenever she could, and shouted “Pompidou!” every time we walked by the modern art museum.

On New Year’s Eve, we joined thousands of people on the Champs-Elysees for the countdown and kissed at midnight. A young, tipsy Italian chatted with us on the trek back to the apartment. “Life is short!” he declared. “You really need to live it.”

***

FEBRUARY 2011 WAS incredibly snowy. I was busy at work and Kris was spending more time on the couch with her leg up. She started using the cane most of the time but still went to Bruins and Celtics games with friends. We painted the kitchen red, and her buddy Al came over to tinker with DJ gear. One day, she left me a note on a little yellow sticky pad that said, “It’s gonna be a great day . . . I can feel it! Xo Kris.”

By now, no surgeon was willing to try and get the tumor off Kris’s sciatic nerve; it was too fried from radiation. Kris started using crutches, the kind that loop around the forearm. Meanwhile, Alexi and Nystrom worked to get Kris into clinical trials, all of them phase 1 or 2, a step above the lab rat. Signing up for a test drug, the list of possible side effects was long and familiar — weight loss, mouth sores, shortness of breath, nausea, debilitating fatigue, death. She would be called a “participant” rather than a patient, which felt scary.

Kris was willing to try, but was excluded from several trials because she was too sick. Another she had to abandon because it required weaning off her meds, and the pain was too much.

Getting around was growing much harder. Still, on March 12, after a long nap and plenty of meds, Kris played to a packed house at Machine. Late in the night, I took her picture and e-mailed it to Alexi. I wanted everyone to remember this was a person with a life, not just a cancer patient.

In April, Kris went to the hospital for a night and it turned into weeks. They put a tube down her nose and throat that emptied brown guck from her stomach. She couldn’t eat or drink; she was sneaking ice chips and throat lozenges. We tried to joke about it, calling her Snuffleupagus, from Sesame Street, but the tube was a dose of medieval torture.

After yet another surgery, the doctors said Kris was healing, but I was worried. The outside world seemed to be fading from her view, that hospital room and the army of caretakers at Brigham and Women’s becoming her whole universe. With some elaborate planning, the hospital staff one day let me sneak in her Italian greyhound, Prana, but the caper barely seemed to register. Kris struggled to take even short walks around the ward. I started agitating to get her home.

Later I’d see how delusional I was. “Everyone loved Kris, including myself,’’ Alexi would later tell me. “You have less distance from someone when you’re attached, and sometimes it’s hard to accept the big picture, even as a doctor.”

There was one wonderful moment when we got home, after struggling out of the car and into a wheelchair. We sat in the backyard, looking at the pear tree we’d planted and a lovely single red tulip that had burst up beside it. The dogs played and wrestled, like they always did when everyone was home and all was well.

I pictured a million more moments like that. But that’s not how it went. Two rough days and sleepless nights later, Kris asked me whether this was her hospice. I knew we had to go back to the hospital right away.

In the waiting room at the Brigham, we were strangely relieved. After they got Kris into bed, a nurse came down the hall to talk to me. “You do know that her condition is very grave?” she asked. I did and I didn’t.

Kris wanted me to go to work the next day, so I did. At lunchtime, when I went to see her, she seemed comfortable, even cheerful. A nurse came in for a routine check — temperature, vitals. She noted that Kris’s oxygen level was a little low.

Then the world tipped on its axis.

A man in blue scrubs appeared, with nurses and staff flowing out into the hall. He spoke in a loud voice: “Kristine! Kristine, do you understand what’s happening?” A nurse called me out of the room and explained that they might have to put her on a ventilator. Had we talked about a DNR and about whether Kris wanted them to take drastic measures to keep her alive?

The words clicked by like panels on an old-time train schedule, mechanically flipping from one town to the next. Drastic measures . . . DNR . . . Then it hit me: She was talking about Kris dying. No. No, we haven’t had that conversation. The nurse’s eyes widened, as if to say, You’re kidding me.

Back in the room, the doctor was trying to explain things to Kris. She surveyed the crowd from behind an oxygen mask, at the chaos developing around her, and then at me. Everyone left so we could talk.

 “Is everything shutting down?” Kris asked calmly. I looked at her, struggling for words.

“That’s what they’re telling us,’’ I said.

After a moment, Kris said, “Well, let’s get this show on the road.”

The next three days were a blur of friends and family, kind nurses and doctors who had shifted from healers to grief counselors. Kris said she loved me and just wished we had more time. She said goodbye to her mother and sister, a few close friends, and then went to sleep.

On Saturday night, a group of DJ friends came by, leaving bracelets on Kris’s wrists and playing her favorite tunes on an iPod. I held her hand all night and kept telling her how crazy I was about her. And how I’d always remember her — riding her bike down the big hill in the Provincetown dunes. Smiling. No hands.

Beth Healy is a Boston Globe reporter. E-mail her at bhealy@globe.com and follow her on Twitter @healybeth.

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