One patient’s NET cancer story

Feature: NET patient-Kelly Taylor-Li-neuroendocrine tumor cancer-NET Cancer Awareness Day

About 1735 words

Woman battles NET cancer 14 years after diagnosis

By Phil Devitt

BOSTON — Kelly Taylor-Li starts her routine by sinking into a comfy chair and smiling. She’s already checked in and done the blood work. Now she waits.

Rain smacks the seventh-floor windows of Dana-Farber Cancer Institute’s Center for Gastrointestinal Oncology — a rigid name for what this 44-year-old suburban mother of two calls a second home.

“It gets cold here,” Taylor-Li says, thanking a nurse for spreading a blanket across her lap.

But she really wants the blanket that’s neatly folded in her bag. She pulls it out, running a hand over its white thread. She says it’s a prayer shawl made by the people at church. Holding it close is like getting a hug.

“I always bring it with me,” she says, pulling the fabric up to her neck. “It’s a reminder of the great circle of friends I have.”

She sometimes reads a newspaper or book to pass the hours, but today she feels like talking. She talks about being a “typical soccer mom,” the vacation she just enjoyed with her husband, movies she wants to see and the reason she’s here: her 14-year battle with a rare, slow-growing form of cancer.

She still remembers the diagnosis doctors gave her in 1998 after cutting a growth from her pancreas and a spot from her liver. Non-functioning islet cell tumor. The words hit her like a brick, but what did they mean?

As Taylor-Li would learn, the mass that had been maturing in her digestive system, perhaps for years, wasn’t the type of cancer people normally contract. It had a name, but not one many people had heard. Taylor-Li not only had to adjust to life with the effects of a pancreatic neuroendocrine tumor (pan-NET cancer), she had to figure out what NET cancer was and how to kill it.

So she’s here, 14 years later, in a sunny, sterile space, dressed in a black V-neck shirt, green cargo pants, slip-on shoes and a pink beaded necklace. She rolls up her left sleeve, lets the nurse plug an IV into her arm and watches calmly as the chemicals start coursing through her veins. In a half-hour, she says, chemotherapy will be over and life will go on.

***

“When people are diagnosed with any kind of cancer, their first thought can be, ‘I don’t want to die,’” Taylor-Li says. “Well, not everybody dies. Some people live through it for a long time.”

In March of 1998, Taylor-Li briefly thought she might die.

It had been seven months since she gave birth to her first child, Grace. She had dismissed some intense fatigue as a side effect of being a new mom. She noticed that she had dropped her pregnancy weight relatively quickly, but that didn’t ring any alarms. But motherhood didn’t explain the wrenching stomach pains and the diarrhea she was experiencing about once a week.

She made an appointment with her primary physician, who told her she might have gallstones. A blood test revealed that her liver enzymes were elevated, a sign that cells in that organ might be inflamed. During an ultrasound the next day, she learned she had a tumor on the head of her pancreas. Her husband and daughter were in the room when she got the news.

“We were stunned,” Taylor-Li says. “I was 30, I just had a baby–and now a tumor? I wondered if I could have passed something onto my child. I kept thinking, ‘What have I done?’ I didn’t know a lot, but I knew this was bad.”

***

Neuroendocrine tumors (NETs) are slow-growing, sometimes hard-to-detect masses that commonly form in the lungs, pancreas, small intestine and appendix — any organ made up of neuroendocrine cells. Such cells receive messages from the brain that tell them to produce hormones.

The problem is that the tumors can mimic the very cells from which they spring, growing at the same rate and releasing the same hormones. Too many of those hormones can overwhelm the body, causing a range of more pronounced medical problems, including insomnia, heart disease and digestion complications.

Functioning pancreatic NET cancer tumors can produce excess hormones such as insulin, glucagon and gastrin, causing low blood sugar, diabetes, ulcer disease and other ailments that could potentially raise red flags about the tumor’s presence in the body. Taylor-Li’s tumor was non-functioning, meaning it did not produce such symptoms.

Non-functioning tumors consequently are often not diagnosed until more advanced stages and often because of abdominal problems, according to the Center for Pancreatic and Biliary Diseases at the University of Southern California. Pancreatic NET cancers on average go five to 10 years between development and diagnosis, according to the Boston-based Caring for Carcinoid Foundation.

The most common remedy is surgery, which Taylor-Li had in the weeks after her diagnosis. During the procedure, for which she spent two weeks recovering in the hospital, surgeons also removed the largest of three spots from her liver. The other two were too small to cause immediate concern, doctors said. Because the cancer was slow-growing, the additional spots and any other growths could perhaps be fixed through other, less invasive treatments.

Healed from the surgery, Taylor-Li next focused her attention on what her diagnosis meant and how to save herself.

***
Cancer changed everything.

In 1998, Taylor-Li’s husband Joseph Li was wrapping up his residency at Beth Israel Deaconess Medical Center’s internal medicine program. The couple had planned to move 1,500 miles from Boston back home to Oklahoma with their new baby, where they would be closer to family.

After Taylor-Li was diagnosed, she and her husband decided to stay put in New England to be closer to top NET cancer experts and treatments. She left the research to her husband and doctors while she suited up mentally for the fight, enrolling in a “cognitive restructuring” program at Boston’s Mind/Body Medical Institute. There, she and other cancer patients rewired their brains to think positively.

“I learned a lot,” she says. “It was encouraging to be with other people who were trying to take control over this disease. The biggest thing about being diagnosed with cancer is that you have so little control.”

She learned to squash the irrational guilt she harbored for bringing a child into the world amid so much personal turmoil. She ignored the statistics that told her she had a 50 percent mortality rate five years after diagnosis.

“I had to shut it off because it was getting me nowhere,” she says. “At one point, I had a doctor who seemed to be so negative. There’s nothing wrong with having an attitude of hope.”

About a year after surgery, Taylor-Li began chemotherapy treatments at Memorial Sloan-Kettering Cancer Center in New York City. On those long drives to Manhattan, she’d see a billboard featuring a middle-aged woman and the words, “Diagnosis: Cancer. Prognosis: Grandmother.” She liked the sound of that.

***

From the start, she knew there would be no quick fix.

“I’m not ever going to get rid of this disease entirely, but I can keep the disease stabilized,” Taylor-Li says.  “I see it as a chronic illness, something I’ll be treating my whole life. I’ve mentally accepted it.”

She switched from Sloan-Kettering to Dana-Farber several years ago for chemotherapy. The medicine she needs is now about 30 minutes from her Needham home instead of several hours. Twice a month, just after sunrise, she drives to Boston alone, walks into the Yawkey Building and rides the elevator to the seventh floor, a bright space with inviting colors and black-and-white photos of the Beatles on the wall. She has her blood tested and body monitored for other growths. She consults with some of the top doctors in the field, trying to stay “one step ahead” of the cancer.

“It’s kind of like a part-time job,” says the stay-at-home mom.

Vigilance pays. In 2007, doctors discovered a NET cancer tumor on the head of Taylor-Li’s left femur. Six months after undergoing a round of radiation, she developed a nerve issue in her left leg and had a partial hip replacement. She has been limping since, as she undergoes physical therapy to regain her strength.

When doctors discovered two spots on her pelvis a couple of years ago, Taylor-Li realized interferon, the drug she had been pumping into her body for almost a decade, was no longer doing its job. “It was outsmarting the disease,” she says.

Her new regimen, which she started in January, consists of Avastin, a drug that stops blood vessels from carrying nutrients to tumors, and Everolimus, a pill she takes once a day at home.
Taylor-Li says chemotherapy is painless. Doctors have found a way to treat the disease “without making patients miserable,” she says. “It just feels a little cool going in. That’s it.”

***

Taylor-Li doesn’t want to be defined by cancer.

“I want to give attention to the disease, but I don’t want the disease to be the focus of who I am now,” she says, paraphrasing Michael J. Fox on his battle with Parkinson’s disease.

She remembers that billboard she saw years ago and thinks about her own future. But she also stays grounded in the present. She’s in a prayer group on Monday and a Bible study class on Tuesday. She surrounds herself with positive friends. And she’s always on the go with her daughters, taking them to school, dance class and music lessons. She says she has never hidden anything from her girls. To them, it’s normal to have a mom who needs “shots” a couple of times a month, Taylor-Li says.

Grace, 14, helps mom around the house when she needs help. Her name is fitting, Taylor-Li says, adding that she might never have been conceived if the diagnosis had come earlier.

Taylor-Li says Grace brought her joy and love when those gifts were needed most.

Several years ago, doctors told Taylor-Li she could conceive again if she wished, but she and Joseph wanted to adopt. They made sure the disease was stabilized — that there was no evidence it would worsen — before they decided six years ago to become the parents of a 1-year-old Chinese girl. They named her Hope.

Taylor-Li says she is grateful to have seen her babies grow.

“I’m very humbled by the fact that I’ve lived with this for 14 years when others die,” she says, as the last of the medicine drips into her veins. “I’m lucky. I’m blessed.”

(This story provided by Walking with Jane. Inc., a 501 (c) (3) non-profit dedicated to eradicating NET cancer. For more information about NET cancer or Carcinoid Syndrome contact walkingwithjane@gmail.com or visit our website at walkingwithjane.org.

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