- My husband and I would like to thank you and those involved with the Sarcoma Alliance for the kind generosity and assistance you all have helped us with. My husband's battle continues, but I know that one day my husband will be free from this disease. Thank you again for the help, we deeply appreciate everything.
- Thank you very much for sending us a reimbursement check to help cover some of our expenses. The Alliance's generosity is very much appreciated. Keep up the good work as we need as much support as possible to fight this horrid disease.
- My family and I thank you for your generous financial support. This helps support my transportation to Houston, Texas, from Ohio, something the research trial requires. It makes the battle I'm forced to fight that much easier knowing people such as the Sarcoma Alliance are able to help.
- I want to thank you from the bottom of my heart for this wonderful gift. I was informed about your program through the social worker at Dana-Farber Cancer Institute in Boston, MA, and I was amazed that the program existed. Now, I am a recipient and I am so grateful to your organization for helping people like me with these very costly expenses.
- Sometimes cancer can be such a lonely disease but your concern and help give me hope for the future.
- Blessings to you and the Sarcoma Alliance; you make a difference in people's lives.
Friday, December 31, 2010
Friday, November 19, 2010
I have to tell you the story behind the $500.00 donation you received via PayPal. Seven years ago I was diagnosed with Synovial Sarcoma of the Larynx. I had to have my larynx removed and had a total laryngectomy. I now speak with a prosthetic voice valve. It’s a gravelly voice, but tons better than using an electro larynx, which sounds like a robotic voice.
Last Friday I received a call from a company in England. The woman who called was unaware that her call had dropped into my voice mail. She began talking to the person who was sitting next to her, laughing and commenting on my voice mail greeting and the way my voice sounded. She called it a ‘creepy’ voice and couldn’t stop laughing. I wasn’t offended because I realized that she was unaware of the reason why I talked like that. But I felt that I should call the company back and just make them aware of what happened so they could avoid any possibility of it happening to someone who would be offended or insulted.
I spoke to the Director of the company who took immediate action. He asked me if I had a favorite charity or organization, and his company would make a donation. I told him that I really felt uncomfortable with him doing that, because I really wasn’t offended. I just wanted him to be aware of what this person is doing on the phone. He gave me his e-mail address and asked if I wouldn’t email him later in the day with the name of an organization.
I thought about it for a couple of hours and gave him the information for the Sarcoma Alliance. My wife and I have always wanted to do more for your organization and I felt this would be one way to express our appreciation to you. Thank you for being there and helping those with all types of Sarcoma!
Friday, October 15, 2010
Last night's episode of "Grey's Anatomy" featured a young ballet dancer with osteosarcoma. His chemo didn't work, and it appeared as if his only option was amputation. He and his parents argued that dance was his life, and he couldn't live without it. He insisted the doctors watch him perform.
Moved by his lyrical performance, the doctors researched and found a technique in which they could remove bone, radiate it and put it back in. They told him that he could continue dancing, and if the surgery failed, they could still do amputation.
The media gives so little attention to sarcoma that I'm grateful when a show like this spotlights issues facing patients. But I wish we could get the word out that patients can get second opinions from comprehensive sarcoma centers, where doctors should know the latest treatments. You don't have to dance for them.
The Sarcoma Alliance gives travel grants up to $350 if you have to go out of town to get a second opinion. Because "Grey's Anatomy" is set in Seattle, this young man didn't need to go far. He could have gone to the Seattle Cancer Care Alliance, where Dr. Ernest "Chappie" Conrad, an orthopedic surgeon, heads the sarcoma department.
Perhaps this episode of "Grey's Anatomy" will give hope to patients that new treatments are being developed. They also should know about clinical trials.
Saturday, October 2, 2010
"I was the grand marshal in 2005. I have been their official Avalon cheerleader for many years … since 1994," he said. "I enjoy being around these folks; they keep me young."
The paddlers raised almost $10,000 for the Sarcoma Alliance this year. (Here's the donation page.) Please see the Sept. 11 post for more information.
Wednesday, September 29, 2010
"The water conditions were good, but it wasn't as fast as last year," said Arthur Beckert, the Alliance's executive directior. (He's in the photo at right with Joe Bark, who has been great about giving us boards to raffle.) The wind picked up and the water got choppier as the day wore on, making it harder for the people who were already behind. Phil didn't give up. Like many sarcoma patients, he found the strength to keep going.
Mark Schulein, the biggest fundraiser, placed 23rd. On his board are the names of Suzanne Leider and Bob Chambliss. Bob's mother, Kathy Chambliss, is in the photo on the right with Mark. David Stringer, who came in 45th, honored Doug Harden and Jon Rowland. His photo is below. Joel Pepper, the newest member of the O2H paddlers, placed 48th. He raced in memory of Janet Lasley, and his photo is at the end.
Team Captain Fred Sardisco and Zach Lenz didn't race in the Catalina Classic this year, and Scott Gamble races in Hawaii. The volunteers on the beach were: Claude Alexander; Arthur and Molly Beckert; Betsy Haas-Beckert; Kathy Chambliss; Ali and Joan Darling; Lisa Harden; Ade Lawal; Philip Leider; Joan Mousseau; Dave Murphy; Ellen Silver; Aimee Spector; and Michael and Marites Tullius.
Sandy Williams baked cookies, and Christine Tope made pies and cookies. Barney Tong took the photographs; more can be found on Picasa. If I left anyone out, please leave a message for me in the comments. Our special thanks to all who helped!
Tuesday, September 28, 2010
It's worth retelling what we went through that year, because it wasn't an easy year, by any means. Ali started off on what would have been the equivalent of the Intergroup Rhabdomyosarcoma Study Group (IRSG) IV standard protocol, which was VAC (vincristine, dactinomycin, cyclophosphamide) with high-dose C. She had a very hard time on that treatment, and within three rounds of chemo had lost 20 of her original 116 pounds, due to a week of only marginally controlled nausea followed by a week of severe mucusitis throughout her digestive tract, both of which greatly limited her ability to eat. As a result, she had to be put on TPN (total parenteral nutrition) to stabilize her weight.
The ideal treatment would have been second-look surgery to remove the remains of tumor after chemo reduced the bulk, but the surgeon in Omaha was still unwilling to operate even though only shreds remained. The tumor had been wrapped around nerves that controlled bladder and bowel, and he wasn't comfortable trying to remove it all without doing considerable damage to them. As a result, we looked for a second surgical opinion, and went to the Mayo Clinic. The surgeon there was very reassuring that he could remove the tumor completely, which he did with clean margins. In addition, we met Dr. Carola Arndt there, and we switched chemo treatments to VAdrC/IE (Vincristine, Adriamycin, Cyclophosphamide /Ifosfamide, Etoposide), the standard Ewing's protocol. Ali also started on high-dose glutamine to control mucusitis, and managed to start eating more.
The worst part of treatment was during concurrent radiation and chemo. Ali developed third-degree radiation burns, and had to be hospitalized for about a week. The pain was excruciating, and she needed a fentanyl patch plus PCA (patient-controlled analgesia) morphine to control it. I still don't know how she didn't get a massive infection at the time, but somehow she got through it. When her counts started to recover, so did her skin, and it grew back so quickly that I could almost SEE it grow back.
She's been cancer-free since the second-look surgery, which was on Christmas Eve, 1996. Ali says it was the worst Christmas EVER. Two visits from Santa Claus don't mean much to a bald 13-year-old girl stuck in a hospital bed who is only one-third of the way through a difficult yearlong treatment for a life-threatening disease. But in some ways, it wasn't all that bad. True, the family was staying in a room in the Ronald McDonald House in Rochester, Minn., rather than in our own home. But we learned what was really important that year. Not the presents, not the tree, not the cards. It was cherishing each day and celebrating the small triumphs of life, making the most of every moment we have.
Saturday, September 11, 2010
Today's 27-mile, open-ocean race launched from Newport Beach and ended on Catalina Island. First held in 1959, the Catalina race is the ultimate outrigger canoe race in California. Teams compete from all over the state, plus Canada, Hawaii, Guam and Japan.
"As members of the Ocean of Hope, we focus our training, racing and fundraising efforts on the Catalina Crossing," captain Aimee Spector says. "Every stroke of those 27 miles to Catalina is dedicated to the sea of people affected by cancer."
Other team members are: Katy Arnold, Tanya Muhle, Lise Fernow, Lisa Wilson, Kim Lanie, Jessie Kennedy, Kate Eveleigh, Jill Schooler, Jeane Barrett, Heather Suskin, Dawn Suskin, Dani Hart, Alice Haas, Laurie Parker, Lorie Vos, Jean Geddes and Maki Myazaki.
For more history, see this page. You can give a donation on behalf of the team or click on the names on the team page (at the previous link) to donate to individuals. It's not too late.
The members' pages explain their involvement. An example is new member Jean Geddes, whose photo is on the right. She says:
I have been paddling since I was a little kid. I have always loved being on the water, training hard, and competing. It has brought so much joy to my life. But training and racing are not the only reasons for paddling. I am a team member of the Ocean of Hope (O2H), a group of paddleboarders and canoe paddlers who give back to the community by dedicating our time to helping others.
O2H was created to support the Sarcoma Alliance, a nonprofit group that is the gathering place for those affected with sarcoma, a devastating cancer that is difficult to diagnose and even harder to cure. People who suffer from the disease and their families have a place to find guidance, education and support, as well as finding current medical information and treatment options, and to network with others.
My Aunt recently lost her battle with cancer. I saw the devastating effect of cancer not only on my aunt but my whole family. I hope that my efforts to raise money through training and racing will bring help, hope, and some day a cure.
Tuesday, August 24, 2010
Tuesday, August 17, 2010
Ocean of Hope stickers on paddleboards caught his eye last year. O2H team members compete in ocean races to raise money for the Sarcoma Alliance, which provides guidance, education and support to patients, families and friends.
"I got tired of surfing terrible waves just to be in the water every day. There were days where I'd take out a longboard and just paddle for exercise up and down the beach instead of dealing with our meager summer surf. I wound up buying a SUP from Joe Bark, and then I realized how miserable it is to paddle a SUP into the wind! I demo'd a prone board for the first time the day after the 2008 Catalina Classic. Went 8 miles with no rash guard, out around the r10 buoy. Came in with a bloody chest from the pad rubbing, but I was hooked."He runs races in the winter and then starts paddling in March,
"building to the first crossing of the year in June, the Rock 2 Rock race. The summer means more and more miles. My max week this year was 2 weeks ago, with 49 miles paddling, 5 miles running and 2.5 miles swimming. Everything revolves around training for those few really big weeks. Now it's winding down. Maybe 20 miles per week to let the body and mind recover ..."
"My buddy's Aunt Janet's passing this year was a tough one. We went to the Jersey Shore with their family growing up, and Janet was the best person ever: full of energy, positive, upbeat at all times, extremely successful and loved by all. She gave me a new perspective on what being an adult could be. It's not as if we were ever particularly close, but I always held her in really high regard as someone to be like. She fought and clawed and got cut to hell all the time for years after [being diagnosed], fighting tooth and nail to see her oldest become a teenager at least.
"I've got 3 little kids of my own now (8.5 months, 2.5 and 3.75), and her situation pulled at my heart strings more and more as it went on and finally ended a few months back."Janet had survived for more than 12 years with leiomyosarcoma, a cancer of the smooth muscles. "I never knew it was a sarcoma until today when I had to ask what specific type of cancer it was," Joel wrote. "Quick Google search = disturbing. Nature is ruthless." I got chills when I read his email because I'm an 8-year survivor of leiomyosarcoma.
"Learning to deal with adversity/pain/discomfort. Finding strength you never knew you had. Coming to grips with the fact that there are big fish in the ocean that may kill you at any time if they so decide, so you may as well not worry about it and just keep paddling. Getting to really know your paddling partners. Making friendships with people that you KNOW you can count on. Feeling the difference attitude makes in life first-hand, when you go from feeling like you can't go another stroke to feeling like you could paddle to Japan and back when a pod of dolphins decides to swim around and under you in an early-season paddle.
"I seriously feel like I owe everyone out there sitting in chemo, radiation, disability and poverty to just suck it up and do it."
Sunday, August 15, 2010
Wednesday, August 4, 2010
- Jeffrey D. Wayne, MD, FACS, Associate Professor of Surgery, Chief, Melanoma and Soft Tissue Surgical Oncology, Division of Gastrointestinal and Oncologic Surgery, Northwestern University, Feinberg School of Medicine, Associate Medical Director, Robert H. Lurie Cancer Center
- Mark Agulnik, MD, Assistant Professor, Feinberg School, Division of Hematology/Medical Oncology
- Thomas F. DeLaney, MD, Associate Professor of Radiation Oncology, Harvard Medical School, Associate Radiation Oncologist, Department of Radiation Oncology, Medical Director - Francis H. Burr Proton Therapy Center, Co-Director, Center for Sarcoma and Connective Tissue Oncology, Massachusetts General Hospital
- Carolyn Messner, DSW, MSW, Director of Education and Training, CancerCare.
Wednesday, July 28, 2010
Representing the Ocean of Hope, Scott Gamble of Honolulu won third place in his division in the prestigious Molokai to Oahu Paddleboard World Championship this week. Hawaii News Now has interviews with paddlers; Scott's interview starts at 1:49 minutes.
"He did great! The race was windy and a bit rough, but the paddlers had the wind and current going with them, which helped," team captain Aimee Spector said. "The Ocean of Hope tent raised a lot of awareness that day! We sold T-shirts and bracelets and gave away stickers. We are definitely looking forward to next year."
Before the race, Molokai2Oahu.com, Wet Feet Hawaii and Hawaii News Now reported on Scott. Afterward, the fourth-place winner mentioned Scott in this account. The Sarcoma Alliance is grateful for the money O2H raises, but the awareness is invaluable.
Tuesday, July 27, 2010
For several years, ESPN has been profiling children with life-threatening medical conditions and granting them sports-themed wishes in collaboration with the Make-A-Wish Foundation. These profiles are featured on the "My Wish" segments on ESPN's Emmy-winning SportsCenter.
Thursday, July 8, 2010
But two rare cancers, angiosarcoma and rhabdomyosarcoma, cut short Dodge Ackerman's life at 22. This year, Gamble signed up with Ocean of Hope, the largest fundraiser for the Sarcoma Alliance.
“I joined O2H because I wanted to help spread the word about their amazing cause,” says Gamble, 33. I am sure both [my cousin] and his family would have benefited greatly from the resources that O2H and the Sarcoma Alliance now provide.”
O2H captain Aimee Spector of Redondo Beach, Calif., says the team will have at least six paddlers in the Molokai to Oahu race. The other five are from the Los Angeles area.
Last year, Gamble placed third in the race. He won first in the 2009 Dukes Hawaii Championships, and second in the 2010 Battle of the Paddle Distance Race. Because he lives in Honolulu, he says, “the Molokai crossing means a lot to me. It is both a mental and physical test ...very grueling, yet rewarding at the same time. It is a great opportunity to not only cross one of the most prestigious channels in paddling, but also meet all the great watermen and women that enjoy the sport of standup paddling as much as I do.
“I got into standup about two years ago and I have been hooked ever since. I really enjoy downwind distance paddling because it combines two activities that I love: paddling and surfing. I really enjoy being out in the open water with nobody around just trying to read and then surf the ocean open swells. Standing on a board versus sitting in a canoe gives a whole different perspective to understanding the water.”
Sunday, July 4, 2010
"We raised over $4,000 in one night," Spector says. "The Sarcoma Alliance is not a big, corporate organization. It does not have major sponsors or huge overhead costs. They rely on grassroots efforts such as the Ocean of Hope to help. 100 percent of the donations we get go directly to helping cancer patients help themselves through education, second opinions and peer networks.
O2H members will compete at Hennessey's U.S. Paddling Championships July 10 in Redondo Beach and the Catalina Classic Aug. 29 in Manhattan Beach. Come on out!
Saturday, June 12, 2010
Saturday, May 29, 2010
“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.
Sunday, May 23, 2010
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.
Tuesday, January 26, 2010
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