Erin Zammett’s arsenal against leukemia: her generation’s mind-set, her own drive to help others

Posted by rob on July 25, 2005 under Uncategorized | Be the First to Comment

Sunday, July 24, 2005

Erin Zammett arrived at her Manhattan office and dialed her voice mail. The message from her doctor was vague but insistent. She returned the call immediately. “There’s something wrong with your blood,” he told her. “You need to get down here right away.

“Don’t wait.”

Tests revealed chronic myelogenous leukemia, or CML, a disease that causes bone marrow to produce too many white blood cells. She was 23, and the first part of her life — two decades of growing, studying, working, playing — snapped shut. The second part gaped before her, pitch-black and unmapped.

It’s how she dealt with the all-too-common diagnosis of cancer that set her apart, that brought her to Oregon and her story to tens of thousands. And it’s why her Portland doctor has called her “the face of a new generation of cancer.”

Her response to her diagnosis in many ways reflects the traits of her generation of young creatives. She placed special value on her independence, and her online research skills gave her tools for taking charge of her prognosis. She bubbled with energy and resourcefulness. And, given her youth, dying was not on her to-do list.

She brought her own personality to the struggle, too. She’s a perfectionist who insists on dotting every “i” and crossing every “t.” And she’s compulsively well-organized, which helps her fight her battle on multiple fronts.

When Erin learned of her CML, she was fresh out of college and working as an editorial assistant — translation: lowest rung on the journalism ladder — at Glamour magazine. The editor-in-chief asked her to document her illness in the magazine, certain that readers would be interested in getting to know a young cancer patient. A photographer documented every facet of her treatment, from bone-marrow biopsies to chemotherapy injections.

The bimonthly columns resonated with readers, and word spread to the cancer community. Speaking engagements filled her datebook. She and her sister Melissa set a fundraising record for the New York City chapter of the Leukemia & Lymphoma Society: $36,000 in six weeks. Erin went on to testify before Congress, to appear on “Nightline,” “Today” and “Good Morning America,” and to write a book called “My (So-Called) Normal Life.”

Part of a documentary

When Erin walked into the oncology waiting room at Oregon Health & Science University in late June, receptionists and nurses ribbed her about her entourage.

“Well, look at all those cameras!”

“Darn it, I didn’t wear any makeup today!”

Erin’s retinue included her mother, Cindy, two reporters, two photographers and 33-year-old filmmaker Kris Carr, who is shooting a documentary called “Crazy Sexy Cancer.” The film focuses on six young women — Kris Carr and Erin Zammett included — who are fighting the disease. Carr is planning to screen her film in January at the Sundance Film Festival and will likely include footage from Erin’s Portland trip.

After her 2001 diagnosis, Erin had three options: a bone-marrow transplant, which requires a genetic match, causes infertility, carries a 15 percent mortality rate and is the only known cure for CML; a course of the drugs Interferon and chemotherapeutic Ara-C, which works in only 30 percent of patients; and Gleevec, a new drug developed at OHSU.

When she heard about Gleevec, she launched a research project to learn more about it. She was intrigued by what she found. Gleevec is a small orange pill that targets only cancer cells, not healthy ones, and causes few side effects while putting many patients into remission. Erin chose it as her path of treatment. In addition, she participated in a clinical trial that combined Gleevec with injections of Ara-C. She began flying to Portland every three months, her entourage in tow.

While Erin’s well-documented visits to OHSU reflect what she calls her “cancerlebrity,” she views the hospital — and Portland — as a retreat. She now gets checkups every three months in New York and really only needs to come to Portland once a year. She chooses to visit more often because she likes her doctor and the city.

Her mother joins her and the two of them shop (her mother could drive to Woodburn Factory Stores blindfolded); eat (they love Veritable Quandary); and sightsee (they’re fond of the coast and Multnomah Falls).

But the cross-country flights are about more than good bargains and good food. Because of her fundraising work, Erin says, she thinks more about other cancer patients than herself. It’s on her Portland trips that she focuses on her own disease.

A nurse led Erin into an exam room and took her blood pressure, temperature and pulse. Then came the moment Erin dreads: the weigh-in. She grudgingly stepped onto the scale and looked away.

“Do you want to know?” the nurse asked with a smile.

“God, no,” Erin groaned. “I’m getting married in three weeks.”

After another nurse took Erin’s blood, Dr. Michael Mauro arrived to go over her charts. Before discussing Erin’s health, he asked about wedding preparations.

“Are you coming?” her mother, Cindy, asked.

“Yes, we’ll definitely be there,” Mauro replied.

“Oh good. Because you didn’t send in your R.S.V.P.,” Cindy said with a smile. “Busy curing cancer, I guess.”

Erin and Mauro, who headed her clinical trial, have become good friends. Mauro, 36, grew up on Long Island, just 10 minutes from the Zammetts, and trained with Erin’s New York oncologist.

According to Mauro, Erin is in “very, very deep remission,” having achieved what is called a major molecular response to her treatment. When Erin was diagnosed with CML, her white-blood-cell count was more than 100,000; today, it’s 5.8. In 2001, 98 percent of Erin’s cells showed leukemia; today, the disease is barely detectable.

Although Mauro predicts that Erin will be in a prolonged remission, he says that projecting her prognosis to her entire lifetime is hard because of her treatment’s novelty. Before Gleevec, most CML patients had five years to live; today, Mauro says, a patient such as Erin, who will take Gleevec indefinitely, could be in remission for 15 to 20 years. The drug isn’t a cure, however, and those who stop taking it are likely to relapse.

Mauro admires Erin’s dedication to raising cancer research money and awareness. The common perception of cancer, Mauro says, is that it affects older people; he thinks Erin’s youth and vitality bring attention to new treatments.

To that end, Erin works as a voluntary spokesperson for Novartis, the company that manufactures Gleevec. Many print advertisements for the drug, which have appeared in national magazines and newspapers, feature a photo of Erin in the Glamour offices and the words: “Deadly cancer at 23. Complete remission at 24.” “One-stop shopping”

Erin’s excitement was palpable as she strode into the bridal shop on Northwest Lovejoy Street. She was clearly looking ahead, past her cancer. “I get to try on my wedding dress!” she chirped.

Anne Mauro, her doctor’s wife and a couture gown designer, greeted Erin with a warm hug. They met in 2003, before Erin was even in the market for a wedding dress, a coincidence that later enabled Erin to engage in what she calls “one-stop shopping”: come to Portland for a cancer checkup, stay for a dress fitting at Anne Mauro Designer Bridal.

Erin emerged from the dressing room to a chorus of “oohs.” She gazed into a full-length mirror, examining the dress from every angle.

Her perfectionism surfaced as she focused on the rear view. “I’m a little worried about my back fat,” she said, pinching a minuscule amount of skin beneath her shoulder blade.

Her mother rolled her eyes. “Erin, you don’t have any back fat,” she said, her Long Island accent betraying a hint of annoyance.

“Mom, even the thinnest person in the world can have back fat,” Erin retorted.

Anne quietly assured her that the dress fit her perfectly and that it was designed to be snug in the back so that the halter would fit properly. Cindy chimed in with a motherly translation: “It has to be snug in the back, or your boobs are going to fall out.”

The room erupted in laughter, one more testament to the way Gleevec helps cancer patients live almost perfectly normal lives.

Her mother’s comment appeased Erin, who twirled in front of the mirror. “I love it! I totally love it! It’s perfect!” she said, grinning.

“You look beautiful, honey,” Cindy said. For a moment, the crowded shop went quiet.

“I should take it off,” Erin said reluctantly, breaking the silence. “I’m sweating all over it.”

A call from her sister

For the second time that day, Erin arrived at OHSU. No weigh-in or blood draw awaited her. Instead, she would speak at a donor reception for the Portland chapter of the Leukemia & Lymphoma Society, an organization that helped pay for Gleevec’s development.

Dr. Mauro took the lectern and introduced Erin to the crowd. “Erin is a very special patient of mine,” he said, “but she’s more than that. She’s a shining example of where we’re going with cancer research.”

As Erin related her story, starting with her diagnosis, the crowd — many directly affected by cancer — listened attentively. Cindy, sitting at the back of the room, watched her daughter with the same pride she displayed at the bridal shop. But tears rolled down her face when Erin began talking about her sister Melissa.

In 2003, “three hours after I got the news that I was basically cancer-free, my sister Melissa called me with news of her own: She had just been diagnosed with Hodgkin’s lymphoma. She was 27 and seven months’ pregnant.

“Everyone immediately assumed that we must be living on a toxic-waste dump, but our doctors assured us that it was more likely bad luck than bad genes or bad water.”

Melissa, now 29, went on to deliver a healthy boy, Andrew, now 2. Five months after her diagnosis, she went into remission, only to relapse 10 months later. Today, after a stem-cell transplant, Melissa is again cancer-free.

“Through my column for Glamour, I get a ton of letters from readers,” Erin continued. “And the one thing I’ve realized is that not everyone has the support of their family or access to the best doctors and information or the means to get it. Not everyone is as lucky as my sister and I have been.”

The crowd gave Erin a standing ovation, and she beamed. Then, as the reception neared an end, Katie Knudson, a 10-year-old with CML, presented Erin with a ceramic wine chiller she had painted. Dotted with pink crowns, it read, “A pretty princess is a healthy princess.”

Erin flew back to New York three days later. On July 14, Dr. Mauro e-mailed the test results from her June visit. Her blood showed no trace of leukemia. On Aug. 5, her 13th column will appear in Glamour. On Saturday, she married longtime love Nick Ruddy in her hometown of Huntington, N.Y.

Chris Hunt: 503-412-7078; christinehunt@news.oregonian.com

Link