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Friday, September 24, 2010

Stop the Silence - Sean Patrick's Fight Against Ovarian Cancer

The first message that she was dying came by bicycle. Sean Patrick rode up the steep trail on Smuggler Mountain, Aspen, Colorado, on a cool, pre-fall day in 1995. She had spent many summer afternoons biking through the Aspen groves, enjoying the late sun shining patchwork on the trail. Normally energized from the strenuous workout and her daily 15- to 22-mile rides, Patrick was shocked when she became so out of breath that she had to get off the bike to avoid throwing up.

“It was radical,” she says. “I couldn’t get up.” At first she thought she had over trained or suffered from exhaustion from too much traveling. Confirming her ideas, Patrick’s doctor suggested that she slow down and get a hobby. “If you can’t’ slow down,” he said to her, “I can always give you a prescription for Valium.”

After weeks of still not being able to ride or rock climb—her favorite sport—Patrick returned to her doctor, who did blood work, but found nothing obviously wrong. He told her not to worry. It wasn’t until 1997 that she finally found out that she had a rare form of ovarian cancer called Micropapillary Serous Carcinoma. After the late discovery, Patrick endured seven surgeries and, at one point in 2001 after being flown to a hospital via flight for life, doctors told her she wouldn’t live past six weeks.

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Patrick did live, and she says, in large part it was due to her experiences in the mountains. She was strong from regularly biking and lifting weights, and she was mentally balanced after decades of rock climbing. The wilderness and leadership skills she gleaned in places like the Rocky Mountains prepared her for the greatest challenge of her life—surviving that six-week ordeal in the hospital.

While on her deathbed in the ICU, a doctor inserted a blood gas line in her body, and it hurt like hell, she says. “I snapped and got angry, and at that moment I came back into my body.” She likens the feeling to being really scared after a rock climbing fall or when she has been stuck on the side of a mountain on a ledge in a thunderstorm. “I would get scared and then angry, and that would act as a catalyst to get moving. I knew if I did not keep moving in the face of my disease that I would not make it.”

Since her extraordinary recovery six years ago, Patrick continues to move rapidly forward. Not only does she still climb and play in the mountains—she topped out on the Grand Teton after 22 hours of climbing through blizzard conditions in 2004—but she also decided to make it her mission to raise awareness and money for the cancer that almost killed her. “My life’s goal is to prevent as many women as possible from going through what I experienced,” she says.

In the last few years Patrick has helped create an ovarian cancer website for the Johns Hopkins Medical Institute, and she regularly travels around the country on speaking engagements. Patrick’s crowning achievement is the non-profit HERA Foundation (Health, Empowerment, Research, Advocacy), which she created in 2002. She organizes Climb For Life events around the country and in Mexico, which bring women and men together to rock climb, do yoga, watch climbing slide shows and films, and, most importantly, learn about and raise money for ovarian cancer.

Friend and Climb for Life volunteer, Deanne Pranke says that Patrick’s climbing events have been incredibly inspirational for thousands of people. “Sean has brought ovarian cancer out in the open and empowered many women such as myself to take charge of our health and educate our loved ones and friends about this kind of cancer.”

Adds Patrick, “The need for perseverance forces women to reach deep inside themselves when they feel like they can’t go further. The lessons you learn from climbing and taking care of yourself in the wilderness translate into successful life strategies on a day to day basis.” In fact, Patrick has never seen a sport as empowering as climbing is for women. “Often when I’ve seen women get to the top of a route in the gym, the transformation on their face is phenomenal,” she explains.

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Sean Patrick’s wide smile greets the climbers as they stream into the third-floor room of REI Denver, spring 2004. Running her hand through a shock of white blonde hair, she says she’s nervous when speaking publicly, but her voice is steady and vibrant as she talks about ovarian cancer and the HERA Climb for Life REI Road Tour (now in its third year), sponsored by REI, Black Diamond, and HERA. She speaks to the audience with the fluency of someone who possesses a vast knowledge of the disease and the politics surrounding it.

After her diagnosis, Patrick became a “research maven,” reading everything she could find on the subject and hounding doctors all over the country. With her energetic and insistent attitude, she’s penetrated the wall of scientific jargon to understand her disease. What she learned inspired her to reach out to others.

Since its inception, she says, the foundation has provided doctors with research grants; provided seed grants to a number of small communities, which have allowed them to offer immediate assistance to aid patients with travel, hotel rooms, and childcare while they are undergoing treatment; and established awareness programs throughout the United States.

Patrick has also convinced thousands of women and men to work with her. Among those women are famous alpinist Kitty Calhoun and Salt Lake City, Utah, resident Hillary Silberman. Both women worked with Patrick to create a video highlighting the HERA Foundation and ovarian cancer.

According to Silberman, making the video and volunteering for HERA changed her life. Silberman’s mother died in 2003 from ovarian cancer, and she says that she felt helpless in the face of her mother’s illness. “My involvement with HERA gave me the tools to work with to deal with my mother’s death as well as people to connect with who understand where I’m coming from.”

By being involved and being proactive, Silberman explains, she has done something positive for others by presenting them with information. “I have also done something positive for myself by beginning to think about what I needed to do to protect myself and get early detection.”

With cancer affecting most of the female members of her family, Silberman is at a high risk for contracting the disease, although she doesn’t currently have it. Her nurse practitioner tried to convince her not to worry, but Patrick and the Climb for Life events convinced Silberman to follow through on her own to seek the medical services she needs for early detection. “The feeling of strength, perseverance and tenaciousness that climbing engenders made me not give up when professionals were telling me not to worry.”

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As with most female-specific diseases, says Patrick, ovarian cancer has typically been ignored by the medical industry. Despite the fact that it kills women of all ages and more women than all the other gynecological cancers combined, many doctors are ignorant of its symptoms and think the disease affects only the elderly. This, explains Patrick, partially results from the medical field’s traditional focus on men and male-specific diseases.

For example, the Agency for Healthcare Research and Quality found that “although coronary heart disease (CHD) causes more than 250,000 deaths in women each year, much of the research in the last 20 years on CHD has either excluded women entirely or included only limited numbers of women.”

Additionally, doctors treat women different than men in hospitals. According to a fall 2001 study published in the Journal of Law, Medicine and Ethics, “women’s pain reports are taken less seriously than men’s, and women receive less aggressive treatment than men for their pain.” Also, women were “more likely to have their pain reports discounted as ‘emotional’ and therefore, ‘not real.’”

“I have had several experiences with this kind of dismissive treatment by both male and female doctors,” says Patrick. “It is a flaw in how medicine is taught—women complain, men don’t, so they take men’s complaints more seriously. To get the best treatment, you have to find a doctor—male or female (one is not better than another in being more empathetic)—that sees you as a person and not a statistical group.”

Although Patrick seeks to change the way doctors view ovarian cancer and other women-specific diseases, she believes it’s more imperative to encourage women to take control of their own health. Ovarian cancer is not a silent killer, she says, “the disease has symptoms, and it’s important that women are made aware of what they are. Women who go to the doctor with gastrointestinal symptoms must make sure that ovarian cancer is ruled out.”

Through climbing, Patrick believes that women can be taught to stand up for themselves. Not only do these events teach women self-reliance, but they are also “places where we can turn our passion for climbing into a passion for making a difference.”

“I think success in climbing no matter what level you climb at—5.4 to 5.14—translates to successful life strategies,” Patrick says. “I want women who are empowered by the mountains to take this back into everyday life, and as it relates to the medical community, I want them to trust their intuition despite their doctor’s contention that they may not have a problem. In climbing and in life, trust yourself.”

For more information on ovarian cancer and the HERA Foundation, please visit the HERA Foundation Website at [http://www.theherafoundation.org]. Climb For Life events are held regularly around the country. The next 2007 event will be held in Boulder, Colorado. Registration has started.

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