A powerful legacy: Daughter inspired to raise ovarian cancer awareness


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Posted Online: May 05, 2013, 11:10 am
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By Annie L. Scholl
Jodie Shagrin Kavensky made a promise to her mother: She would try to do for ovarian cancer what Nancy Brinker, sister of Susan G. Komen, did for breast cancer.

The 55-year-old Rock Island woman is doing her best to keep that promise to her mother. Ms. Kavensky is the executive director of the NormaLeah Foundation, which she founded in 2008 to create public awareness of ovarian cancer, promote early detection of it and support research into it. The foundation honors the memory of Ms. Kavensky's mother, Norma Yecies Shagrin, and Norma's sister, Leah Yecies Hantman, both of whom died of the disease.

"When they made her, they threw away the mold," Ms. Kavensky says of her mother. "The same could be said for my aunt. They were very friendly and very opinionated. Both of them were so full of life. They were almost like Mexican jumping beans. You couldn't control them. You never knew what they were going to do next."

In addition to being fun-loving people with a passion for the finer things in life, both women had serious sides, Ms. Kavensky adds. "They were very determined people. If there was something they wanted, they went after it."

Ms. Kavensky recalls how agitated her mother was after going to a cancer luncheon in her gated community in Boca Raton, Fla., three months before she died. Although it was a cancer event, nothing was said about ovarian cancer. In sharing her irritation, Ms. Kavensky says, her mother was "trying to give me the message that something needed to be done."

"It was her way of saying, 'If anyone can do it, you can do it.' It was her way of challenging me to make something good out of her death."

Ms. Kavensky's mother died in 2008, less than two weeks after turning 73 — a decade after Ms. Kavensky's aunt passed. She was 67.

After her mother's death, Ms. Kavensky didn't immediately start the NormaLeah Foundation. Instead, she focused on finishing raising her two daughters and winding down her volunteer commitments in the Quad-Cities community. In 2011, she resurrected the promise to her mother after reading, "Promise Me," the memoir by Nancy Brinker, who founded the Susan G. Komen foundation in memory of her sister. "I got goose bumps," Ms. Kavensky recalls. "There are a lot of similarities between her story and mine."

By December 2011, the foundation was off the ground and running. Ms. Kavensky is in the process of waiting for its nonprofit, 501(c)(3) status through the Internal Revenue Service. The organization has a board of directors, which Ms. Kavensky chairs, and is a partner member of the Ovarian Cancer National Alliance. It also partners with the Community Foundation of the Great River Bend so donations can be tax-deductible.

One of the NormaLeah Foundation's biggest efforts to date is creating and distributing "BEAT OVCA" cards, which remind women of the four most common symptoms of ovarian cancer. The cards have been distributed throughout the Quad-Cities in medical offices and in businesses that cater to women. Of the 60,000 cards originally printed, only about 9,000 remain.

"The community has rallied around us and embraced what we're doing," Ms. Kavensky says. "It's a vote of confidence."

Ms. Kavensky, who loves jewelry just as her mother did, carries "Bling4Cancer" jewelry on the foundation's website, normaleah.org. The jewelry -- from pendants to earrings to bracelets -- originally came in just teal, the color that symbolizes ovarian-cancer awareness, but the line has been expanded and now includes colors that represent other cancers. Proceeds from jewelry sales benefit the foundation's efforts and ovarian-cancer research.

Ultimately, Ms. Kavensky wants ovarian-cancer screening to become a routine part of annual gynecological exams for women. The Pap test, she explains, does not test for ovarian cancer. She also added that women who have had their ovaries removed are still at risk for the disease. "There is a lot of misinformation and hence, misunderstanding at all levels of society about the disease," she says.

While no universally accepted test for early detection of ovarian cancer exists, there are tests for women who may be at high risk for the disease. Ms. Kavensky urges all women to be vigilant self-advocates for their health and demand these tests if they are experiencing any of the symptoms of ovarian cancer.

According to the American Cancer Society, in 2012, about 22,280 women received a new diagnosis of ovarian cancer, and about 15,500 died of the disease. Ovarian cancer is the ninth most common cancer among women, excluding nonmelanoma skin cancers, and ranks fifth in cancer deaths among women — more deaths than any other cancer of the female reproductive system. Ms. Kavensky explains that ovarian cancer is so deadly because in almost 75 percent of cases, it is not found until it has spread beyond the ovaries.

Like her mother before her, Ms. Kavensky shares a BRCA mutation — a genetic predisposition to the disease. She found that out after her mother died. "I felt empowered knowing that I had the gene and could be proactive about my health as it relates to ovarian cancer, and hopefully not suffer as my mother and so many other women have from this insidious disease," she says. "I'm still at a higher risk than normal for breast cancer. I'm not worried about dying from the disease, but am certainly more vigilant in my screening for these cancers."

Ms. Kavensky believes her mother knows that she made good on her promise. "My mother is my biggest cheerleader up there — her and her sister," she says. "I really do believe a greater power is helping steer the foundation. It's not just up in heaven. It's here on Earth -- just the way the community has embraced us and our message."

Ovarian cancer symptoms
The NormaLeah Foundation uses the acronym "BEAT" to help women identify the symptoms of ovarian cancer:
Bloating
Eating less, feeling fuller
Abdominal Pain
Trouble with your bladder and bowels
Learn more at normaleah.org.














 



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