Gearing Up for the Bike Tour!

2009 Team Sarcoma “Core Team” Bike Tour
July 18-25 from Cumberland, Maryland to Washington, DC

Raising Research Funds and Awareness of Sarcoma

Sarcoma is a rare and dangerous cancer of the connective tissues (such as bone, nerves, muscles, cartilage, joints, or blood vessels). It affects both children and adults. Between 15-20% of all children’s cancers are sarcomas and about 1% of adult cancers are sarcomas. Todd is fighting a high-grade osteosarcoma (bone cancer) called chondroblastic osteosarcoma that has metastasized to both lungs.

On July 18th, the participants forming the 2009 "Core" Team will meet in Cumberland, Maryland, to begin their tour along the C&O Canal Towpath that will take them into Washington, DC on July 24th. The event is targeted to draw 50 cyclists including sarcoma patients, caregivers, physicians, friends, families, and those concerned about sarcoma. The mantra of the Team Sarcoma Initiative is “Sarcoma Knows No Borders,” and accordingly, people of different ages and backgrounds and from several countries will be participating on the "Core" Team.

The "Core" Team is part of an internationally coordinated set of events called the 2009 Team Sarcoma Initiative, a.k.a. the International Sarcoma Awareness Week ("ISAW") taking place worldwide during July 18-26th to raise public awareness about this disease and the impact it can have on families and to raise funds to support sarcoma research. ISAW involves thousands of people worldwide. People form local "Team Sarcomas" in their home countries around the globe and they cycle, run, walk, hike, swim, etc. on one or more of the days that the members of the "Core" Team are on their tour along the canal. The media coverage of the various events helps make hundreds of thousands of people aware of this devastating and often deadly cancer. These events also raise hundreds of thousands of dollars to support research to find methods to diagnose, treat and cure this disease.

"Core Team" Bike Tour Itinerary

• July 17: Fly from Minneapolis, MN to Washington D.C. Take the train to Cumberland, MD.

• July 18: Get fitted for our bikes, tour the C&O Canal Museum, exhibits and canal boat, and have dinner at Ristorante Ottaviani’s on the downtown Cumberland Pedestrian mall.

• July 19: Bike approximately 15 miles from Cumberland to the Michael Cresap House in Oldtown, Maryland (with visits along the way to the Lockhouses at Lock 70 and Lock 75). Stop for lunch, then bike 15 miles to Paw Paw, West Virginia. Dinner at the Carmicheals.

• July 20: Bike 32 miles from Paw Paw to Hancock, Maryland, part of the way on the Western Maryland Rail Trail ("WMRT"). After lunch, we will shuttle to Berkeley Springs, West Virginia, where we will visit the Berkeley Springs Museum and swim in one of the oldest swimming pools in the U.S. Dinner at Tari’s Café.

• July 21: Bike 18 miles from Berkeley Springs to Fort Federick, Maryland (we will tour Fort Federick), then bike 40 miles to Shepherdstown, West Virginia (where we will tour the Four Locks ). After lunch, we will take a motor coach to the Antietam Battlefield (which we will also tour). Dinner at the Bavarian Inn.

• July 22: Bike 14 miles from Shepherdstown to Harper’s Ferry, West Virginia, where we will have time to explore the town, go tubing down the Shenandoah River, and go on a "O’ Be JoyFull" Historical Town Walking Tour. We will then bike 14 miles back to Shepherdstown. Dinner at the Yellow Brick Bank.

• July 23: Bike 17 miles from Shepherdstown to Brunswick, Maryland, where we will visit the Brunswick Railroad Museum. After lunch, we will bike 20 miles to White’s Ferry (and stop at Monocacy Aqueduct along the way). At White’s Ferry, we’ll take the ferry across the Potomac and go on to Leesburg, Virginia. Dinner at the Lightfoot Restaurant, followed by a luminary ceremony.

• July 24: We will take shuttle to Great Falls, Maryland, where we will take a mule-driven Canal Boat Ride. After lunch, we will bike 10 miles to Georgetown, and then either bike or shuttle to the National Mall and the Capitol in Washington D.C. to post a "Rights of Patients with Sarcoma" proclamation on Congress’ door. Closing dinner banquet and celebration at the Holiday Inn.

• July 25: The tour ends with a morning breakfast at the hotel. We will then fly back to Minneapolis!

*** We would greatly appreciate sponsorships/donations to "Team Andrews" for the 2009 Team Sarcoma "Core Team" Bike Tour. Information about donating is located on the right-side column of this blog. Be sure to mention that your donation is in honor of Todd Andrews so we will be notified and can thank you personally! Thank you very much! ***

Interview with Todd & Karen by Mary Sorens, Liddy Shriver Sarcoma Initiative

MOMENTS IN SARCOMA AWARD RECIPIENT: TODD ANDREWS
http://awards.team-sarcoma.net/

On April 28, 2009, the Liddy Shriver Sarcoma Initiative announced the two recipients of the Moments in Sarcoma awards. Todd Andrews, an osteosarcoma survivor from Minneapolis, MN, received a sponsorship to participate in the “core” Team Sarcoma Initiative bike tour. While some of Todd and Karen’s thoughts were presented in the press release, we thought visitors might enjoy reading more of what they had to say about their lives and the Moments in Sarcoma award.

An Interview with Todd:

Q: How did you choose what to write about for the Moments in Sarcoma project?

Todd: Having battled this disease for five years now, there were plenty of moments I could have written about. A lot of very meaningful or moving moments, but when I thought back to right after I was diagnosed, other than the actual bad news, this was the moment that stood out. “Here Comes the Sun” has been a theme song and an inspiration in my continued fight and something I hadn’t told a lot of people about, so this seemed like a great way to really express how big of a moment it was to me. In fact, what I wasn’t able to tell in the story (given the word count constraint) is that after I left the clinic that day, the song came on again in the car on my way home and then later the next day. And it’s not as if this is a song that’s played a lot, so while it definitely seemed like the sign I was looking for at the time, “someone” made sure the message was reinforced a couple more times, just in case I missed it the first time.

Q: You were told that you probably wouldn’t live 5 years when you were 26 years old. Most of us can’t imagine…what was that like?

Todd: Well, I wasn’t actually told that until it metastasized to my lungs in 2005. Originally, the doctor told me that in 65 to 70% of cases, osteosarcoma is curable if caught early enough. At the time they were hopeful mine was. When we asked what happened to the other 30-some percent, the doctor was honest with us and told us, “they die.” But I just always lumped myself into the “curable” group from the beginning and told myself and my family that I would beat it. And I believed it. I still do. So even when it came back in my lungs and the doctor gave me those horrible odds of survival, I was certainly scared but I wasn’t about to call it quits. The numbers by themselves can be scary, but like one of the doctors told me, I’m one person, not a percentage of a person so those numbers don’t mean much to me specifically. I figure given the incredibly slim odds of even getting this cancer in the first place (nothing about my osteosarcoma has ever been considered “typical”) I’ve already kind of “won the cancer lottery,” so why can’t I overcome the odds and keep on living? Possibly until they find a cure. I guess that’s always been my attitude.

Q: What has helped you beat the odds?

Todd: I think aside from keeping a positive attitude, the support group I have around me in my wife and family and friends has been a huge source of strength to me. They keep me going. Even with cancer, I love my life and it’s because I get to spend it surrounded by incredibly wonderful and amazing people.

Q: What are your hopes for the Team Sarcoma bike tour experience?

Todd: When I was a kid, I used to participate in bike tours with my dad and brother. But that was almost 20 years ago, so this is a terrific opportunity to do another one and get a chance to relive a little bit of my childhood. Aside from that, I’m also really interested to meet the other people on the tour because we already have a passion for curing sarcomas in common and I’m excited to find out what else we might have in common. It should be a blast!

Q: Who will come with you, and how have are they significant in your life?

Todd: My wife and dad will be joining me. Obviously they are both incredibly important to me. Karen, my wife, has been by my side throughout my entire battle and provides me with more love and support than anyone - she’s absolutely amazing. My dad lives a few hours away, so I don’t see him as much as I might like, but like I said, we both have such fond memories of our past bike tours when I told him about this one his immediate response was “Where is it? I’ll be there.” This bike tour can’t help but make some great memories for all of us. I can’t wait.

Q: Is it important to work to increase sarcoma research funding? If so, why?

Todd: Absolutely. There are no “insignificant” cancers - they all need to be researched and studied. But I think because sarcomas are less prevalent than other cancers, they tend to be under-funded and under-studied and that is really no excuse. The Team Sarcoma Initiative is helping fill a big need in raising money to study sarcomas and hopefully eliminate them once and for all.

An Interview with Karen, Todd’s wife

Q: How would you describe Todd (in a few sentences)?

Karen: When I first met Todd 11 years ago while we were in college, I was attracted to him because he’s confident, smart and funny (not to mention handsome, of course). I truly think those same qualities are helping him now. He’s confident enough (and stubborn enough!) to believe he can overcome anything cancer throws at him, smart enough to understand the statistics mean nothing at this point, and funny enough to get both of us through the really tough parts. I think he’s uncomfortable when people describe him as “inspirational” — since he thinks he acts like anyone would in the same situation — but the way he has maintained such normalcy, kept his sense of humor, and overcome so many medical obstacles while fighting osteosarcoma inspires me and so many other people every day.

Q: What do you think participating in the Team Sarcoma bike tour means to Todd?

Karen: It is an enormous honor — it’s all he’s been talking about! Obviously, he’s excited about bringing awareness to sarcoma, meeting other patients/supporters, and hopefully raising some money to aid the cause. But beyond that, this is a goal Todd set for himself and I think it will mean the world to him when he achieves it.

Before cancer, Todd loved playing sports and exercising, but cancer has taken much of that away from him. Between the allograph in his left arm, countless rounds of chemo, three lung surgeries, radiation, and a near-fatal heart failure episode, Todd has largely been forced to watch from the sidelines these past few years. The lowest point was in January 2008, when a massive pulmonary embolism left him dependent on an oxygen tank at the age of 30. Doctors told us that due to the scarring and limited function of his lungs, he might require oxygen permanently. But Todd didn’t accept this and to everyone’s surprise, 10 months later, the oxygen tank was removed from our home. The bike tour gives Todd something to work towards physically and mentally, and participating in this event after dealing with so many setbacks will be a real source of pride for him.

Q: What do you hope the bike tour experience will be?

Karen: Both Todd’s dad (an avid biker) and I (a non-biker) are going to join Todd for the bike tour. I’m sure Todd’s dad is excited about the opportunity to be touring with Todd again, since the two of them used to do bike tours across Wisconsin many years ago. Plus, since they live 200 miles away, Todd and his dad don’t get to spend as much time together as they’d like. As for me, I’m excited to be there to support Todd, and seeing him achieve this goal is going to be very emotional. To see Todd participating in a bike tour after all he’s been through is really a miracle. This is just another example of how anything is possible. I’m so proud of him already! This is going to be an incredibly memorable experience for all three of us.

Q: You have been Todd’s partner and caregiver throughout a five-year ordeal. Is there anything you would like to share with other spouses and caregivers who are facing what you’ve faced?

Karen: When your loved one is diagnosed with cancer, everything changes in an instant. One day, you’re living a normal life and then suddenly, you are thrown into a new world of chronic illness and uncertainty. From then on, your life revolves around cancer — monitoring symptoms, dealing with side effects, living in the hospital at times, waiting nervously for scan results — and you lose any sense of control you once thought you had over your future. You have to learn to “live one day at a time,” but that’s a lot easier said than done. Chronic stress becomes a way of life, and you will grieve over your lost sense of normalcy.

For me, the hardest part has been the unrelenting fear of losing Todd. Oddly, this fear usually hits me in between crises, when things probably appear “fine” to others. A couple years ago, I was struggling emotionally in such an unhealthy way that I had to seek help. And I am so glad I did! I hope other spouses/caregivers recognize that it’s okay to admit when they need help and will seek it out. It’s important to take care of your own emotional and physical well-being not only so you can continue to care for the patient, but also so you can make the most out of whatever time you have together.

Although this is a tough road, it hasn’t been all bad. Todd and I are more in love than ever. We have been surprised and humbled by the kindness and support we have received, not only from family and close friends, but coworkers and strangers too. We have drawn immeasurable strength from the notes people have left on our CaringBridge website during both good times and bad. I have found both medical information and friendship through an online support group devoted to osteosarcoma. Most importantly, we have learned to appreciate life in a unique way and to be grateful for every single day we get to spend together. My hope for other spouses/caregivers is that they can find their silver linings as well.

Press Release

Two Cancer Survivors Awarded the Trip of a Lifetime with the Team Sarcoma Initiative
http://www.prweb.com/releases/2009/04/prweb2359324.htm

Ossining, New York (PRWEB) April 28, 2009 -- The Liddy Shriver Sarcoma Initiative is pleased to announce the recipients of the Moments in Sarcoma awards. German De la Rosa Cabrera of Mexico City, Mexico, and Todd Andrews of Minneapolis, MN, have been chosen to receive sponsorships for the Team Sarcoma Initiative bike tour from July 18-25, 2009.

The online Moments in Sarcoma challenge invited participants to write briefly about their experiences with sarcoma, a rare and dangerous disease that accounts for 1% of cancer cases. Poignant submissions poured in from around the world, and one entry is published daily at the Team Sarcoma website.

De la Rosa Cabrera's submission summarized his struggle with osteosarcoma and his life now, 13 years later. When he was just 14, De la Rosa Cabrera injured his knee playing basketball. Like many sarcoma patients, he thought the swollen mass was just an injury, but six months later he was diagnosed with osteosarcoma. While his peers were out playing sports, he endured chemotherapy and surgery.

"It was very difficult to live with. You really don't know what to do. I personally think it helped me to mature and grow, to see life from another point of view and to appreciate the moments I am presented with in life," De la Rosa Cabrera said.

Doctors in Mexico City removed the tumor and saved De la Rosa Cabrera's leg, but he dealt with pain and additional surgeries for the next ten years. Finally, he chose to have an amputation.

"It was a painful process for ten years, and the decision to amputate the leg freed me. I am in better health without suffering, and I can do more independent living…playing sports and in my band," De la Rosa Cabrera explained. At the age of 26, he is now enjoying a full life: "I'm an audio engineer, music producer, bassist and vocalist of my band, Televisor. I'm helping people who suffer through similar situations."

De la Rosa Cabrera is looking forward to seeing new places and experiencing the bike tour with other cancer survivors. His message is one of hope: "Cancer doesn't mean death.... Cancer is part of life. It helps us to mature and see life in a different way and makes us better people."

Andrews' submission described a powerful moment during an MRI scan five years ago. He was grasping for hope when the song "Here Comes the Sun" started playing in the background. Andrews, 31, explains: "Having battled osteosarcoma for five years now, there were plenty of moments I could have written about. But when I thought back to right after I was diagnosed, other than the actual bad news, this was the moment that stood out."

When Andrews developed metastasis in 2005, he was given some grim statistics. He recalls, "I was certainly scared, but I wasn't about to call it quits. I figure, given the incredibly slim odds of even getting this cancer in the first place, I've already kind of 'won the cancer lottery,' so why can't I overcome the odds and keep on living?"

Andrews grew up riding in bike tours with his family and is eager to relive a bit of his childhood. Even while on chemotherapy, he is excited about building up his strength and sharing the experience with his wife and father. His wife, Karen, said: "The bike tour gives Todd something to work towards physically and mentally, and participating in this event after dealing with so many setbacks will be a real source of pride for him."

Andrews also hopes to advance the cause for sarcoma research. He explained: "There are no 'insignificant' cancers - they all need to be researched and studied. But I think because sarcomas are less prevalent than other cancers, they tend to be under-funded and under-studied, and that is really no excuse. The Team Sarcoma Initiative is helping fill a big need in raising money to study sarcomas and hopefully eliminate them once and for all."

To learn more about the Team Sarcoma Initiative, view a full listing of events, and get involved, visit: http://www.team-sarcoma.net. To read more about the Moments in Sarcoma award recipients, visit http://awards.team-sarcoma.net.

About the Team Sarcoma Initiative: The global Team Sarcoma Initiative is coordinated by the Liddy Shriver Sarcoma Initiative, an all-volunteer organization dedicated to improving the quality of life for people dealing with sarcoma. The Liddy Shriver Sarcoma Initiative publishes peer-reviewed articles in the Electronic Sarcoma Update Newsletter; provides comprehensive, sarcoma-specific clinical trial information at http://www.SarcomaHelp.org; and has raised over $1.25 Million dollars to fund in peer-reviewed research grants.

Todd's "Moment in Sarcoma" Entry

A Moment in Sarcoma from Todd
Minneapolis, Minnesota

CT scans only take a few minutes. Except for the first one after you’ve been told you have cancer. It lasts for weeks.

Twenty-six years old. Married. College-educated. Gainfully employed. Fortunate to have a rather blessed life. And now faced with the uncertainty of how much longer that life would continue and how much “living” it would be able to do.

Scared. Sad. Frustrated. Questioning. Wanting something - anything - to lean on at that moment to know this can be overcome. That things will be okay.

I’m not - or should I say, “wasn’t” - a very spiritual or religious person. But moments like this in life give way to needing a “higher answer.”

With my heart racing and nerves on end, I continued to feign a smile and calmly chat with the CT tech, trying not to show the emotion that was just beneath the surface. I concentrated on not letting my voice crack. On keeping my breathing even. On holding back tears. And then I silently prayed.

To whoever would listen.

“Please send me a sign,” I started. “Any sign. Something to let me know that I will be all right. That I can beat this. That this can be overcome.”

“I NEED this. I need this sign.” For the first time since I lay down on the CT table, I became aware of the light sound of a radio playing in the “control area” in the adjacent room. It had been on the entire time, but it was just now that my ears tuned in. An unknown song faded out. A new one faded in.

“Here comes the sun. Do do do do. Here comes the sun. And I say, it’s all right.”

Goose bumps. A smile. And some soft tears.

Right then I knew. It would be all right.