O2H gala tonight

The Ocean of Hope paddlers from Lanakila Outrigger Canoe Club are hosting the Ocean of Hope Gala tonight to raise money for the Sarcoma Alliance. The event, which organizers plan to hold each year, will be at 6:30 p.m. in Palos Verdes, Calif. With the support of Paul Hennessey, Kona Brewing Co., Pyramid Beer, San Pedro Brewing Co., Joe Bark Paddleboards and a local band, the organizers hope to raise more than $6,000. For more information, or to donate, click here. We are grateful for the support!

Magic Mineral Broth

Gisele Barber, founder of Personal Cuisines in Sunnyvale, Calif., has offered to share recipes to improve the lives of sarcoma patients. What a yummy gift!

“Her passion to find new and healthy ways for the selection and preparation of food and meals is drawn from her experience as a survivor of colon cancer,” says her Web site.

The recipe below comes from "One Bite at a Time" by Rebecca Katz, a senior chef with the Commonweal Cancer Help Program.

“I'm a big fan of hers, and she has given me permission to use her recipes,” Gisele says. “Every recipe in this cookbook is wonderful!”

After her husband brought it to her attention, Gisele hurried to a bookstore. “I clutched the book to my chest like I had just purchased a bar of gold and cried all the way home. It was very emotional for me and still is because I remember the complications while going through chemo. The medical professionals didn't advise me of what to eat. They just told me that I would be very sick. Unfortunately, it was an awful experience with me ending up in the hospital with my intestines collapsing and again ... there was nothing they could treat me with. I'm forever grateful for this book and Rebecca's hard work because she has now made the journey with chemo/radiation so much easier.”

The recipe below makes a broth rich in trace minerals, potassium and electrolytes to help nourish the body, Gisele says. “It is wonderful for flushing out toxins and nourishing damaged cells and stimulating the taste buds. Drink this broth as you would a cup of tea or use as a base in soups and stews. I recommend freezing what you don’t use in 2-4 cup containers for future use.”

Magic Mineral Broth

6 unpeeled carrots with half of the green tops, cut into thirds
2 unpeeled medium yellow onions, cut into chunks
1 leek, both white and green parts, cut into thirds
1 bunch celery, including the heart, cut into thirds
4 unpeeled cloves garlic, halved
½ bunch fresh flat-leaf parsley
4 medium red potatoes with skins on, quartered
2 Japanese or Hannah’s yams or sweet potatoes with skins on, quartered
1 Garnet yam with skins on, quartered
1 tablespoon sea salt
1 (6-by-1-inch) strip of kombu
2 bay leaves
12 black peppercorns
4 whole allspice or juniper berries

Directions: In a 12-quart or larger stockpot, combine all the ingredients. Fill the pot to 2 inches below the rim with water, cover and bring to boil.

Remove the lid, decrease the heat to low, and simmer a minimum of 2 hours. As the stock simmers some of the water will evaporate; add more if the vegetables begin to peek out. Simmer until the full richness of the vegetables can be tasted.

Strain the stock using a large coarse-mesh strainer (remember to use a heat-resistant container underneath). Bring to room temperature before refrigerating or freezing.

Arts in medicine

By Suzie Siegel

She was an angel with an autoharp. Like many people, I had struggled with sleep in the hospital. She offered to play, and I told her I didn't know if I could stay awake. She laughed and explained she was there to help, not perform a concert. After a few minutes, I snored along with her, in a duet.

During my week at the Moffitt Cancer Center in Tampa, the Arts in Medicine staff worked wonders. One man, a friend, maneuvered his double bass into the crowded room. I cried when he played "Evening of Roses," just as another sarcoma patient did several years ago. We think of it as her song. I hadn't cried in a long while, and I made him hold me as I sobbed. That was healing, too.

Drugs and discomfort splintered my sleep until I fell into a dream of love and comfort. I didn't want to forget those feelings. If I could draw the dream, I thought, maybe it could lead me back to the dream world.

An artist came to my room with paper, pencils, pens and paint. I'm no artist, but I convinced myself that I could draw something meaningful to me, even if it had no other merit. I became a child again, delighting in the colors, coloring, coloring, coloring in the midst of the medical world. I drew my dream.

The Arts in Medicine program also includes poetry, journaling, dance and other movement. I'm glad to see bastions of conventional medicine offering other ways of healing, and I hope patients seek them out. Don't wait for your doctor to recommend them because he may know little about them. Ask your hospital staff if they have anything similar. If so, make plans ahead of time. If your hospital has no formal program, invent your own. Bring your own music, notebooks and art materials. As Dr. Jimmie Holland says:

Not all medicine comes in a bottle.

Kate McGarrigle & clear cell sarcoma

Tomorrow, in New York City, an informal gathering will celebrate Kate McGarrigle, who died last week. At the same link, an obituary describes her: "Outrageous at times, but anything was more fun when Kate was along." The New York Times also recalled her life.

I was at a board retreat for the Sarcoma Alliance last week when she died, after struggling for 3½ years with clear-cell sarcoma. Here is a definition from SARC:

Clear cell sarcoma (melanoma of soft parts) is an unusual hybrid tumor that appears to be biologically related to alveolar soft part sarcoma. It is one of the rare tumors with features of both sarcoma and melanoma, including the ability to travel to lymph nodes (typical of melanoma) and to lung (more common for sarcomas). Surgery and radiation of the primary tumor site provide the best chance for cure.

-- Suzie

What does hope mean to you?

This summer, I talked to a woman who lost her beloved partner to sarcoma. Both had participated in the Ocean of Hope fundraising campaign. She talked about how hope has different meanings for different people at different times.

A newly diagnosed patient may hope that the sarcoma never comes back while someone living with metastatic disease may hope for a cure. A dying patient may have hope of a painless death or hope to live just a little bit longer. Even after a patient dies, family and friends may still harbor hope that life will be better for those who get sarcoma in the future.

Rosalie, a longtime survivor, recalls hoping to find the strength to keep learning what she needed to do to survive.

Erica Gero, a leiomyosarcoma (LMS) veteran, wrote about the multitude of hopes she has living with the disease.

I hope dinner tonight will be delicious.
I hope my husband's broken rib feels better soon.
I hope my friend's broken heart heals quickly.
I hope I never get LMS again.
I hope the rain ends by noon.
I hope I can lose 5 pounds by the end of October.
I hope my LMS never returns.

For me, hope is part of my whole life.

I've included a card depicting a tree, called "The Hope Within," painted by Tamara Maas, a sarcoma survivor who donates a portion of the sale of her prints to the Hope Lodge in Cleveland.

-- Suzie Siegel

Gene Mutation Linked to Aggressive Childhood Cancer

This article appeared in the NCI Bulletin on October 20, 2009

Rhabdomyosarcoma (RMS), an aggressive childhood cancer caused by mutations in genes that control the development of skeletal muscle tissue, has often spread (metastasized) by the time it is diagnosed in children, leading to poor survival rates. Researchers have now identified mutations in the fibroblast growth factor receptor 4 (FGFR4) gene that are associated with metastasis and poor outcomes in patients with RMS.

The FGFR4 protein belongs to a family of proteins known as receptor tyrosine kinases, which are involved in cellular signaling processes that help regulate cell growth, maturation, and survival. The gene, the researchers believe, may provide a target for therapy. The results appeared online October 5 in the Journal of Clinical Investigation.

Researchers from NCI; the National Heart, Lung, and Blood Institute; The Children’s Hospital at Westmead, Australia; and the Nationwide Children’s Hospital in Columbus, OH, were involved in the project. Their previous research, and that of others, has shown that FGFR4 is highly expressed in RMS. Because the gene is active during muscle development and not in mature muscle, the team investigated whether expression of FGFR4 might contribute to RMS. Using mouse models, the researchers showed that the growth and spread of human RMS cells to the lungs was inhibited by suppressing FGFR4 expression. After sequencing the FGFR4 gene in human RMS tumor samples, they found that more than 7 percent of the tumors had mutations in the tyrosine kinase portion of the protein. Some of these mutations caused the protein to become overly active. Mutations that increase receptor tyrosine kinase activity have been found in other cancers, but the researchers note that this is the first time that mutations in a receptor tyrosine kinase have been found in RMS.

With a series of lab and animal studies, they confirmed that two of the FGFR4 mutations caused increased tumor growth, reduced RMS cell death, and enhanced the ability of RMS cells to metastasize.

The mutations, which were found in both types of RMS, alveolar and embryonal, appeared to act via the STAT3 pathway. Mouse RMS cells harboring these mutations were also more sensitive to treatment with drugs that inhibit FGFR4, which has “direct implications for personalized therapy and for patients with metastatic RMS, for whom long-term prognosis remains poor,” said lead author Dr. Javed Khan of NCI’s Pediatric Oncology Branch.

A beautiful board

Thanks to Joe Bark, who donated this 12-foot paddleboard, won in our raffle by David Greenberg, a chiropractor

from Newport Beach and a good friend of Mark Schulein, former captain of Ocean of Hope.

"He was very excited to win the board," said Aimee Spector, one of this year's captains. "He had bought tickets for the raffle in the winter, and then this summer's raffle, and he says he'll keep buying more raffle tickets in any future raffle because he wants to support Ocean of Hope and, well, he has good luck!"

-- Suzie

Lucky 13

Go to the Web site for the South Bay Daily Breeze to see our yellow "Ocean of Hope" banner in photo No. 13, from the 2009 U.S. Paddleboard Championships. This was back in July -- I'm always late! -- but Dave Murphy says he was excited to be at Manhattan Beach, Calif., when fellow board member Jeff Bradbury came ashore. Events like this are a great place to educate people about sarcoma.

-- Suzie

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

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.

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

Photos from O2H

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

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.

Raffle for a brand-new paddleboard

There's one day left for the first paddle, but you've got till Sept. 19 to win the second one.

These beautiful boards come courtesy of the Ocean of Hope, with support from paddleboard/

surf/SUP shaper Joe Bark. The photo shows the board we raffled off this winter. The new one will be at the beach tomorrow, and the next is on its way. All proceeds go to the Sarcoma Alliance.

The Ocean of Hope is our team in the Catalina Classic. A board will be raffled off tomorrow at the Classic after-party on Manhattan Beach. The next will be raffled off Saturday, Sept. 19, on Hermosa Beach after the Paddleboard and Lifeguard EXPO. Winners do NOT need to be present to win.

You can get one ticket for $3, 2 for $5, 4 for $10, etc. Send checks to the Sarcoma Alliance, 1714 Havemeyer Lane, Redondo Beach, CA 90278. Please include your mailing address so we can get your raffle stubs back to you. We'll announce the winners.

Don't miss this awesome opportunity! You cannot find a better deal anywhere.

Ocean of Hope Aug. 30

All of us at the Sarcoma Alliance urge you to donate or volunteer at the Manhattan Beach pier Aug. 30, if you can. Above is a great photo from last year's O2H.

There are two team captains this year: Fred Sardisco represents the paddleboarders, and Aimee Spector represents the outrigger team.
There are about 20 paddleboarders, both men and women, and 29
women on our outrigger canoe team. Since O2H started, it has raised $437,509 to help sarcoma patients.

-- Suzie