Woman who beat a rare form of cancer twice helps others fight their battles

By LISA B. McPHERON
Staff Writer

CHINO HILLS - When doctors first discovered the football-sized tumor growing on Arlyn's kidney, they didn't know what it was.

Many doctors wouldn't.

The disease is so rare it's not posted on the National Organization for Rare Disorders's Web site. Only one in 2 million people get it.

So in 1998, she began her fight with adrenal cortical carcinoma, which attacks the adrenal gland on top of each kidney. She also started her unwavering quest to bring more attention to a disease that could come back and take her life.

"It's the worst feeling to get this rare cancer and feel like nobody else has it," the Chino Hills woman said. "I'm here to reach other people. I think I reach people who are alone."

She doesn't advertise that she is a cancer survivor - she once volunteered at an American Cancer Society Relay for Life, without walking the survivors' lap. However, she's worked countless hours reaching out to people with ACC and researching the disease.

She has traveled to several hospitals throughout the country looking for doctors with expertise on ACC. She corresponds with leading cancer doctors, and binders of information on ACC stack up at her home.

About a year ago, the Hawaiian native took a beginning Web design class at Cal Poly Pomona so she could spread information about the cancer and share her personal growth and frustrations with the disease.

"A lot of people in her situation probably roll over and curl up in the fetal position," said Ralph Westfall, who taught the design class. "It's so exciting -- for her to go out and do something about it. ... She's a courageous person."

Westfall pays to advertise Arlyn's Web site on Google. When Web surfers type Adrenal Cortical Cancer in the search field, an advertisement for her site appears on the right side of the screen. Since Westfall posted the ads, she gets contacted about once a week by people with ACC or by those who know someone with the disease.

Through her Web site, the Cal Poly student spearheads ongoing petitions to legislators pleading for their support to fund ACC research. She has had little success because the disease is so rare and funding typically goes to research diseases that infect more people, she said.

She raises funds for ACC research by selling kidney-bean charm necklaces and aims to hold a kayaking fund-raiser soon.

Westfall hopes to someday see her as the first poster-child for adrenal cortical carcinoma.

Olga Raskina, 27, of Los Angeles, has never met Arlyn, although they know each other through the Web site and talk by phone. When Raskina discovered she had ACC, she found medical reports about the cancer but a nurse did not know anyone suffering from the same disease.

Arlyn's Web site changed that.

"It was definitely very helpful," she said. "When you're diagnosed, you think nobody else knows what you're going through."

The cancer outreach is a big part of her life, but she doesn't want it to be the only thing. She earned her bachelor's degree in accounting from Cal State Fullerton, but her new calling is teaching. She is earning her credential at Cal Poly Pomona and teaches Bible study at --------.

"I find peace in teaching," she said. "I know I want to do this because the kids like me and ... I like them."

Indeed, at Arlyn's Bible study class Saturday, her students spoke freely about how much they like her.

"She's nice, She's cool. Sometimes I wish she was my everyday CCD teacher," said Jasmin -------, 10, of Chino Hills.

Kevin -------, 10, likes her outlook on God and the planet.

"She's influential in my life as a good thing," the boy from Chino Hills said.

Arlyn discovered her spiritual side during her first bout with cancer.

She now says if God has plans to take her life, he isn't getting it without a fight.

Arlyn beat adrenal cortical cancer twice. She has developed an informative Web site about the disease. For more information about adrenal cortical carcinoma, visit her Web site at www.followingthesun.org.

Lisa B. McPheron can be reached by e-mail at lisa.mcpheron@dailybulletin.com or by phone at (909) 483-9354.