Thursday, April 30, 2009

Miles for Moffitt

This run/walk May 9 raises money for research at the Moffitt Cancer Center in Tampa.

This year, I'll have a table in the health expo to tell people about services available to sarcoma patients, such as our live chats, discussion board and peer-to-peer network. 

There also will be a Sarcoma Speed Daemons team again. To get you in the spirit, here are some photos from 2007 by Jim Stem. That year, we won an honorable mention for having more than 30 team members.

Above is Miles for Moffitt President Karen Dalton, who gave an award to Greg Stamatelos for being the fastest survivor. He ran 5 miles in 40 minutes, 32 seconds. Although he had brain cancer, he ran for the sarcoma team and has been a supporter. In the white T-shirt is Chad McLeod, a survivor of Ewing's, who ran 10 seconds behind Greg. Dr. Samuel Agresta, a medical oncologist in the sarcoma program, ran alongside Chad, his patient. Both are triathletes. Dr. Agresta now works in San Francisco. 


Cindy Harris covered the spokes of her wheelchair in green and yellow to match her Sarcoma Alliance T-shirt. Her husband, Rob, and son, Kevin, brought refreshments for the team. Dr. Julia Cogburn, below, then a medical-oncology fellow, modified her Sarcoma Alliance T-shirt to make it cooler under the hot Florida sun. She came in second in the 5K race among women aged 30-34, with a time of 26 minutes, 22 seconds.

Another team member to place was Jay Ronca, below, who finished 11th among men aged 30-34, running 5

miles in 43:29. I'm sure a lot of people got educated that day on what a sarcoma is. Wish us luck this year!
Suzie Siegel

Sunday, April 19, 2009

We go worldwide

When we have more money and help, we plan to translate our pages into other languages. In the meantime, we hear from people around the world who can speak, read and/or write in English. Executive Director Arthur Beckert estimates we reach people in more than 30 countries each year. Our Peer to Peer Program includes people from 16 countries outside the United States. Our friends and supporters are just as far-flung. As an example, here is journalist Wilma Yamzon of Manila in the Philippines.
-- Suzie Siegel

Don't forget your teeth

      I have bladder damage from surgery and radiation. Among other things, I was prescribed Ditropan, which makes my mouth as dry as the Dust Bowl. I've been eating candy and chewing gum. Some nights my mouth is so dry that I fear the parts will stick together. Sometimes I go back to sleep with a cough drop in my mouth. It would be sad if I survived metastatic sarcoma only to choke to death on a cough drop.
       I finally called my dentist's office, and the staff recommended various products (mostly by Biotene) that would relieve my dry mouth, especially at night, without causing cavities or other damage. Apparently, a lot of older denture-wearers know about these products, but I didn't.
       I did know that it's good to get your teeth cleaned before starting treatment, such as chemo, in case you can't during treatment, and to get your teeth checked more often. 
       All of this reminds me of a lesson that I need to keep learning: We have to be our own advocates. We have to be our own case managers. We need to check drug interactions and side effects. And if something is bothering us, we need to ask around for relief.
      -- Suzie Siegel

Friday, April 17, 2009

Ocean of Hope Campaign begins with the Catalina Relay

The 2009 Ocean of Hope campaign seems to begin earlier and earlier each year thanks to a wonderful group of paddleboarders and members of the Lanakila Outrigger Team. This year Aimee Spector is leading the charge with races dedicated to the Sarcoma Alliance and a fantastic raffle featuring a stand up paddle board from Joe Bark. The raffle was a tremendous success raising over $4,000. Alicia Gaut was the very happy and excited winner. Thank you, Aimee for the great beginning to 2009.

Following is report of Aimee’s latest adventures on the sea……

“I raced with my Lanakila teammate Shien Lu who is really awesome at pulling out the stops on race day. We both had an excellent race and were fired up the whole way. Jane Cairns, paddleboarder extraordinaire and Ocean of Hope team member, was our escort boat driver, so, come on, how could we go wrong?

We left Catalina on Sunday to begin the race with grey overcast skies, a side wind and not much bump. In short, conditions pretty much stunk.

There were about 50 teams racing, a total of 110 paddlers, with three teams in our division. That doesn't sound like much I know, but this is 40 miles of grueling racing, so it comes down to the elite (or crazy, or both). My partner and I battled it out with another team the whole way across, pretty much trading places until around mile 25. Then our rival team got a 3-minute lead, and we thought maybe all was lost. But Shien Lu and I are pretty phenomenal racers, so we decided we should just close that gap, and in less than 5 miles, we had. Then it was a dog fight to the finish. I would like to say we won, because that is an awesome ending, but we didn't. We finished a boat length behind, about 20 seconds. But honestly, it was one of the best races I have ever had. I couldn't' have asked for a better partner, escort boat driver, or finish (well, unless we had won).

I had Tina Owens' name on my canoe across the channel (she died of sarcoma last year a few months after the Catalina Classic where Matt Belanger had her name on his paddleboard), and her husband Bill and daughter Sarah were at the finish to greet me. Slade and Kelly were also on the beach in full 02H regalia; I was proud to be racing as member of Ocean of Hope. I think it gave me that extra push when conditions were terrible, or when a change went wrong, or when Jane told me we weren't even 1/2 way there yet.

On a side note, the third place team came in about 45 minutes behind us. So a boat length isn't too bad at all!”

Talk to you soon,


Friday, April 3, 2009

ProSolutions Software Partners with the Sarcoma Alliance

The Sarcoma Alliance is proud to report that ProSolutions Software has designated the Sarcoma Alliance as its charity of choice. ProSolutions is the leading software provider for the management of spas and salons and be donating up to 15% of the cost of software purchases to the Alliance. On behalf of everyone we help, the Sarcoma Alliance thanks ProSolutions for this wonderful partnership.