Tuesday, June 5, 2012

Swing for Sarcoma in Dallas

By Suzie Siegel

Celebrate — or recover from — Father’s Day with live music to raise money for the Sarcoma Alliance 5-9 p.m. June 17 at the First Unitarian Church of Dallas.

Stevie Stix & the Uptown 6, the church's acclaimed jazz combo, will perform first, followed by Merry and the Mood Swings, a 2010 Grammy contender.

In D Magazine, Darryl Smyers said: "Merry and the Mood Swings, a gifted quintet of women ... plays new wave, blues, soul, and '60s- and '80s-inspired [music], all with an irreverent and whimsical lyrical bent ..."

I swear you'll have fun, but then again, I'm biased because my good friend Mary Hestand sings in both bands. I'm indebted to Mary, who spent much time with me when I had my first surgery in Dallas, my hometown. She lives in Dallas, but has flown to Tampa, where I live now, to help care for me when I've been sick. She also has played guitar and sung for other sarcoma patients. I'm grateful to her bandmates for volunteering their time, too.

Mary is a senior administrative associate in the Department of Molecular Genetics at the University of Texas-Southwestern Medical School in Dallas. She has been there 17 years. She's in a yoga class with Francoise Colley, who worked 12 years there. She retired a year ago as administrative coordinator in the Dean's Office.

Leiomyosarcoma is supposed to occur in only one person in 4 million. But Mary ended up with two friends with LMS: I was diagnosed in 2002 and Fran in 2008.

"At work, everyone was super kind and supportive and, of course, my family and friends lifted my spirits," says Fran, who lives in Coppell. Fran and I talked by phone and email before I met her in person in 2009, along with her two sisters, Martine and Christine. Fran is now seeking donations of food and drink for the June 17 fundraiser.

"I am feeling well despite the fact that I have [metastases]. So, why not use my time and energy in a helpful and benevolent way? Last June, my sister Martine, who had been my great cheerleader, passed away very quickly after being diagnosed with metasticized pancreatic cancer. She refused to give up hope and continued to make plans for the future. Martine's courage has given me a new life force!"

How many LMS survivors does it take to put on a fundraiser? At least one more: Jean Walton of Bedford also has volunteered. She, too, is in treatment for metastatic disease. She and I were connected in 2009 through the M.D. Anderson Network. (The Sarcoma Alliance also offers a Peer-to-Peer Network.) After many conversations on the phone, I look forward to meeting her!

For a silent auction, Jean is dona-ting jewelry and beautiful vintage clothes.

"Instead of lamenting about my future, contributing to the Sarcoma Alliance fundraiser makes me feel as if I’m giving back for all the support I have received on this cancer journey," she says. "The Sarcoma Alliance online support group and reliable information has made it easy to stay connected when I have been on chemotherapy. Sarcoma is rare and the fact that the Sarcoma Alliance offers financial assistance so that people can seek a second opinion from a sarcoma expert may be life-saving for that person.

"Giving back makes me feel more like a survivor!"

The church is located at 4015 Normandy Avenue. Tickets are $30; add $10 if you want two tickets for beer or wine. To pay by PayPal or credit card, enter the amount here. Keep clicking and you should get a comment section. Type “Dallas.” Checks also can be made out to the Sarcoma Alliance, with “Dallas” in the note section, and given to one of the organizers or mailed to Sarcoma Alliance, 775 East Blithedale #334, Mill Valley, CA 94941.

Sarcoma survivors can attend for free or donate whatever they can afford. We want to meet you!

If you would like to help us, or you have something for our auction, please email me at suziesiegel at tampabay.rr.com.

O2H paddlers rock June 17

The paddleboarding trifecta begins June 17 with the Rock 2 Rock race in Southern California, and our Ocean of Hope team will be there.

"Rock 2 Rock is considered a tune-up race for both Moloka'i 2 Oahu in July and the Catalina Classic in August," says O2H co-captain Aimee Spector of Redondo Beach. O2H, a series of ocean races, is the Sarcoma Alliance's biggest fundraising campaign. She ticks off the names of the team members: co-captain Fred Sardisco, Phil Ambrose, Joel Pepper, Steve Shikiya, Steve Shlens, Scott Gamble and Mike Rogers. She calls them "super nice guys."

"Our team is comprised of some of the most humble yet talented paddleboarders in the South Bay and beyond."

The 22-mile Rock 2 Rock Paddleboard + Stand Up Paddling Race begins off Catalina Island and finishes at Cabrillo Beach in San Pedro in Los Angeles County.

"You can race solo or in a team, traditional or stand-up," Aimee says. "Awesome goody bags, pre- and post-race meals, a great finish-line venue and the much-anticipated Ocean of Hope raffle of a Bark board are all good reasons to attend! $5 from every competitor’s race fee will be donated to the Alliance."

Famed paddleboard shaper Joe Bark started the race 15 years ago, and George Loren continues it as race director. Check out our Facebook page and register here.

"I am going solo for Rock 2 Rock this year," Aimee says. "Normally, I am a consummate outrigger-canoe paddler and only dabble in the fine art of paddleboarding when the whimsy hits me. But I might as well put R2R under my belt because all of the money I raise and the training I put into it and the time it takes is dedicated to people suffering from sarcoma that I may never meet but can help through my efforts.

"It also reminds me that ordinary people can do extraordinary things and that being grassroots connects us to people that need our help the most."

On June 23, O2H will have its tent and information on sarcoma at the Jay Moriarity Memorial Paddleboard Race in Capitola, Calif. The race starts at New Brighton State Beach and honors a legendary surfer.

Sarcoma survivors are welcome guests at any of these events. In the photo below, for example, Aimee and Fred greeted Steven Alan Fry in April at the Waterman’s Applied Science Paddle for Humanity races in Dana Point, Calif.

The avid outdoorsman from nearby San Juan Capistrano had paddled in P4H races before. This year, he read a news release that O2H had become an official charity of P4H. He decided to attend even though he is undergoing treatment for metastatic Ewing sarcoma.

"I have a lot of pain and nausea," says the entrepreneur. "But it did me a lot of good to get out in the fresh air and meet the O2H paddlers. There's nothing I enjoy more than being out on the water among paddlers."

Steven is director of HPWA (Human Powered Watercraft Association), which "represents the interests of all human powered watercraft through public education, protection of natural resources, defense and expansion of public access and general promotion of the world's most environmentally friendly and healthy form of water sports."

He believes in a healthy lifestyle. So, when he was diagnosed in 2010, "it was like being hit by lightning." He had seen a doctor for a sore shoulder, only to find out he had sarcoma in his right scapula. He is in a Phase 3 clinical trial for Yondelis, which is approved in Europe, but not yet in the U.S.

"We still have a lot to do in providing health care to people in this country."

For other events, click here.