Thursday, September 17, 2009

Lanakila women heading to Hawaii

Women from the Lanakila Outrigger Canoe Club will carry the Ocean of Hope (O2H) banners to Hawaii, where they will compete Sept. 27 in the Molokai to Oahu Race. The 23 women will start in Hale O Lono Harbor, and the finish will be around 1:30 p.m. at the Hilton Hawaiian Village.

Read about them in the Honolulu Advertiser. The story includes a quote from Brenda Maroney of Corona, Calif., who was diagnosed with synovial sarcoma in 2005. She attends a sarcoma support group in Redondo Beach, where the Lanakila team is based.

"O2H and the Sarcoma Alliance have made my journey real. They have given me hope," Brenda says. "I have felt like I was alone -- the token one-legged woman with knee cancer. I have been able to help manage my care with the information that SA brings, and the collection of experiences from survivors, caretakers and friends."

I'm thankful to Brenda for helping us, and I wrote this "thank you" to the Lanakila team. They have raised $14,000 for the Alliance so far!

I just found team captain Aimee Spector's story about raffling off a paddleboard. The raffle will end Saturday, Sept. 19.
-- Suzie Siegel

Friday, September 11, 2009

Gynecologic Cancer Awareness Month

Why would we bring attention to this month on a sarcoma blog? Because we also want to raise awareness about women with pelvic sarcomas, many of whom get their first diagnosis and surgery from a gyn oncologist.

I took this photo of N.E.D., a band comprised of gyn oncologists at the Society of Gyn Oncologists meeting in February. They rocked the San Antonio convention center.

Seeing them play reminded me that doctors are people. I shouldn't need reminding. After all, I have friends who are doctors. In treatment, however, it's easy to treat MDs like Minor Deities, forgetting that they are only humans, and they have human emotions.

N.E.D. stands for "no evidence of disease," a state that many of us treasure. The band's first CD, "Rhythm Heals," went on sale Tuesday. In the clip below, Dr. Joanie Hope sings lead vocals on the title song. This is what their record company says:
The mission of the band is to enhance knowledge about gynecologic cancers and bring hope through rhythm for women undergoing treatment. The doctors strongly believe music heals. In fact, more than 250 journal articles report findings investigating the beneficial effects of music on pain, anxiety or depression. In a recent study at Memorial Sloan-Kettering Cancer Center, investigators found that patients who received music therapy while undergoing chemotherapy reported 37% less mood disturbance than other patients and 28% less anxiety. Other studies have shown that music can assist patients in coping with difficult illnesses. N.E.D. is focused on using music to convey this comfort.
My only suggestion would be that the band mention sarcoma on its page that details gyn cancers. Some of us are patients, too.

Thursday, September 10, 2009

More paddling for sarcoma Saturday

A women's team from the Lanakila Outrigger Canoe Club will compete Saturday in the U.S. Outrigger Championships to raise money for the Sarcoma Alliance.

The 23 women will race 27 miles from Newport Harbor to Avalon on Catalina Island in Los Angeles County, as part of Ocean of Hope (O2H), the alliance's biggest fundraising campaign.

Spector got involved with O2H four years ago. She recruited eight other women from the Lanakila club, which is based at Redondo Beach's King Harbor, also in LA County. That first year, they raised about $3,000. This year, they have raised more than $12,000 so far, not counting the money ($4,500 so far) being raised in a raffle for two paddleboards. (One board already has been awarded, but people can still enter to win the second.)

The women also raise awareness about sarcoma: They wear jerseys with the O2H logo, their escort boats carry O2H banners, and they register as Lanakila/Ocean of Hope.

The top photo shows the team at the Iron Paddling Championships in San Diego in June, where they took first place open and first overall. Team captain Aimee Spector is in the back steering. She is third from the left in the other photo, which shows the "team in the Cook Islands where we brought our O2H banner and spread the word throughout the South Pacific!" Aimee says. "We ended up medaling in two of our races also!"

When I first heard about the Ocean of Hope, I didn't really understand. I felt like Emily Litella: "What's all this about paddleboat races???" After I figured out what a paddleboard was, I still didn't get that O2H was a team, among various others, that competed in the Catalina Classic. I then didn't know what women in canoes were doing. Now I understand that O2H is a fundraising effort involving ocean sports, with team members participating in different competitions in different places.

"Just to clear it up," Aimee says, "the Catalina Classic is a paddleboarding race where individuals [paddle] 32 miles from the Isthmus on Catalina Island to Manhattan Beach Pier. Ocean of Hope started there and that has always been the flagship race/fundraising effort."

The outrigger race Saturday does not get the same fanfare because awards are given out on Catalina Island, with a much smaller audience, she notes.

"Just by getting involved we have touched the lives of people we may never meet," Aimee says. "I see O2H as an opportunity to open the paddlers' minds to giving back while doing something they love. Like being involved in any nonprofit, it takes dedication and commitment, which this team of paddlers already possesses. And the sport of outrigger paddling takes determination and perseverance, and that is what sarcoma survivors use every day to get through their journey."

I agree. Sometimes I feel like I was dropped in the ocean, fearing I would never make it to shore. The Sarcoma Alliance is my escort boat.

If you want to support the team -- and sarcoma patients -- click here. I just did, to thank the athletes for putting up with all my questions.
-- Suzie Siegel

Thursday, September 3, 2009

Photos from O2H

These photos are from Barney Tong. You can see more on Picasa.

Tuesday, September 1, 2009

Remembrance & inspiration

Nine years ago, I stood at the water’s edge in Manhattan Beach, waiting for a friend on a paddleboard who was competing to support people with sarcoma. He was racing across 32 miles in the Pacific Ocean for a small campaign called the Ocean of Hope for a small organization called the Sarcoma Alliance. He was paddling 32 miles from Catalina Island to Manhattan Beach, using only the strength of his arms and the will in his heart to make it to the finish line.

Sunday, I looked across the blue ocean under a very hot California sun, and I thought about that first race and those I know and love who are survivors of sarcoma. And I thought about those I have loved and lost to sarcoma. All of those people have been a source of inspiration and wonder to me.

I thought about all the people I know, myself included, who may not suffer from the disease directly but have been touched by it in some profound way. I have witnessed incredible strength and endurance under seemingly impossible circumstances. I reflected on what this race on this day and this organization and this disease has meant to me.

My friend Suzanne was the founder of the Sarcoma Alliance. Suzanne was diagnosed with synovial sarcoma at the age of 25. Her friend Wendy was dying of liposarcoma after a 15-year battle. Wendy asked Suzanne to carry on her work of supporting people with sarcoma after she was gone. The Sarcoma Alliance was born in 1999 in Wendy’s honor. I was asked to help make this dream a reality and have done what I could to help my friend and others with sarcoma.

My little friend wanted a place where people affected by sarcoma could find guidance, education and support. The mantra was: “You are not alone.” I have memories of her sitting at her small desk, answering emails, phone calls, and writing personal notes. She would do anything and everything to try and help others. I remember the many invitations to eat, drink, be merry and fold letters for the Ocean of Hope campaign. Eat, drink and be merry to stuff and stamp envelopes. Even as she faced recurrence, metastasis and the various treatments that followed, she maintained her focus and resolve that the Sarcoma Alliance needed to help as many people as possible.

When Suzanne decided to stop all treatment in 2002 and live the rest of her days as fully as she could, she continued to focus on the Sarcoma Alliance. She wanted the organization to survive even if she did not. How brave and wonderful she was. And selfless to the end. How proud she would be today to see how her little basement organization has survived and grown and continued to help others. She insisted that Ocean of Hope continue to exist and that it should be a time of celebration in spite of the sadness and heartache that sarcoma can bring.

I continue to support the Sarcoma Alliance and the Ocean of Hope to celebrate the lives of those lost to sarcoma. I celebrate the strength of those who live and survive and move forward in spite of the disease. How brave and wonderful all of you are.
-- board member Marites Tullius

ETA: Please read the comments for more thoughts. Also, we added a photo of Suzanne and Marites.