What’s just as hard as fighting cancer for young adults? Surviving cancer.

By Tonia Farman

It’s ironic that my younger brother, Scott, passed away of Leukemia nine years ago today on National Cancer Survivors Day. He was 19.

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What’s also ironic is that I’ve learned more about surviving cancer as a young adult after his death. That part has come through his legacy. What I know is this: Survivorship is just as hard as fighting the disease itself for young survivors.

There’s the depression, body insecurities, incurred debt, false appearance of health, infertility, fear of recurrence and a lost sense of purpose.

‘Surviving cancer’ is wracked with stigmas survivors can’t shake, and this assumption that once the remission party confetti is swept up and the extra cake is plastic-wrapped, everything in the survivor’s life goes back to “normal.”

That’s not even a little bit true.

For the approximately 70,000 young adults diagnosed with cancer each year in the United States, the truth is that they’re not the same person they were before cancer, and they face challenges that other survivors don’t.

Take dating for example. There’s a stigma attached to cancer that drapes over dating life. Do you just drop, “Hey, I had cancer.” on the first date?

That’s not easy to unload, and it’s not exactly light conversation. If that situation goes sour, imagine what that would do to a survivor’s self-confidence.

Or, consider the social challenges. Survivors get ghosted by their own friends because they feel uncomfortable talking about cancer.

The National Cancer Institute (NCI) says a “desire for normalcy” can keep AYAs, or adolescents and young adults, from sharing their cancer experience with heathy peers, which adds to their sense of isolation. That’s why NIH says follow up care to address the late effects and psychosocial needs is particularly important for young adults.

After treatment, young survivors return to a world that expects them to snap back into the mold, into their old selves and the life they once lived. Everyone’s like, “You’re healthy, you’re young. You’ll get back after cancer, no problem. You’ll beat this. You got this!’”

But it’s not that easy.

We harm survivors when we question why they don’t act or feel the same as they did before cancer because it creates a culture of shame. It shames them for feeling weak and ungrateful, even though they have every right to feel whatever they feel.

Our society’s adoption of this belief that young people—no matter the circumstance—are indestructible has led to a lack of resources to help young adult survivors sort through these feelings. Historically, young adults have been “left behind” by research and support from the medical community, forgotten between the pediatric and older adult treatment settings.

I know how this goes because as my brother struggled through chemotherapy and a short-lived remission, there were almost no resources out there that addressed his unique needs as a young survivor. He briefly returned to college at one point and felt this total disconnect among his friends. He had no interest in partying; he was like 18 going on 30 and burdened with sickness.

After Scott passed, I became determined to help young survivors heal in a way that the healthcare system alone couldn’t.

One of the ways Scott found solace during treatment was through the outdoors. In Scott’s honor, I founded Athletes 4 Cancer, a nonprofit that helps young adult survivors reclaim their lives after cancer through the community and connections made through outdoor adventures. We teach them how to surf, ski, snowboard or standup paddle, and it’s through overcoming this challenge with their “cancer body” that many survivors find a renewed sense of purpose, confidence and hope. More important is the camaraderie they find with other survivors and the healing power of accepting, and even feeling inspired by, their “new normal.”

This is my brother’s legacy, and I’m proud of it, but we can all do more to help young survivors accept their “new normal” after cancer.

  • Refrain from discussing your own personal struggles that aren’t relevant to cancer.
  • Offer to take them to do something completely out of routine.
  • Encourage the survivor to share what life been like since treatment. (“How are things different for you?”)
  • Respect their post-treatment struggles rather than discounting them.
  • Offer an ear to listen. Listen intently and be open-minded.

Let’s let go of our expectations for young survivors to be as they once were, and be there for them as they are now.

Help us spread the word about the challenges of young adult survivorship by sharing this article!

 

A4C receives Mass Effect Award for Services, Outcomes, & Collaboration

We are ecstatic here in the A4C office this week! Just having returned from Atlanta for Livestrong’s Critical Mass Young Adult Cancer Alliance Conference, we are rejuvenated and inspired by the work being done in the adolescent and young adult cancer community. But before we jump in head-first to all the work that lies ahead, we are briefly soaking in the recognition of an epic award that A4C received at the conference.

Athletes for Cancer received the Mass Effect Award at the conference, awarded “For providing services and outcomes to adolescents and young adults with cancer by increasing survival rates and quality of life through collaborations between cancer researchers, healthcare providers, and advocates.” Yeah! How awesome is that?

Collaboration is so integral to the success of our programs, and we are thrilled that its importance and the outcomes from it were recognized in this arena!

Thank you Critical Mass and our partners in the healthcare community…

  • John Wayne Cancer Foundation
  • OHSU AYA Oncology – Brandon Hayes-Lattin, Mindy Buchanan, Rebecca Block, Susan Lindemulder
  • Oncology Youth Connection – Grant Roesler & Volunteers
  • Seattle Children’s Hospital & AYA Program – Leah Kroon, John Blalock, Becky Johnson
  • SAMFund – Sam & Amelia
  • mAss Kickers Foundation
  • Other partners… MD Anderson Cancer Center, Dana-Farber Cancer Institute, Hoag Memorial Hospital

 

A4C Executive Director Tonia Farman after receiving the Mass Effect award, with Stupid Cancer CEO Matthew Zachary at the Critical Mass Young Adult Alliance Conference

Bring the family Saturday, Dec. 20 for KB4C and CHAP Holiday Bizarre Day in the Pearl, 2-5pm!

logo_kiteboard-4-cancer-blo and KB4C beneficiary Children’s Healing Art Project presents…

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This weekend brings the Children’s Healing Art Project and KB4C together again for a day of art-making and holiday fun at Children’s Healing Art Project’s Holiday “Bizarre.” KB4C has been specially invited to host a day of one of CHAP’s Holiday Bizarre Studio days of Christmas in the Pearl District. There will be all kinds of shopping traffic in and out of the studio and Kiteboarding 4 Cancer was fortunate to host the Saturday right before Christmas!

Come see the John Doyle Bling Kiteboard, sequined by the children of CHAP and auctioned off at the 2008 Kiteboarding 4 Cancer! In the studio,  help us bead, paint, and sequin up the new board for 2009!

John Doyle Bling Board decorated by the CHAP kids at KB4C
John Doyle Bling Board decorated by the CHAP kids at KB4C

Art stations will be up and running — Make-an-Ornament Zone, Bead Factory, Silkscreening T’s and more. Shop the Columbia Sportswear Sample Sale — thousands of donated Columbia items that are selling at greatly reduced prices ($5-$40).

Kids get to paint clothes and sell them!
Kids get to paint clothes and sell them!

At 2:30, don’t miss Crackd Nutz — A performance of NW Professional Dance Project artists leading CHAP young artists in a short improv of The Nutcracker. Very entertaining and really… a crack up.

The children of CHAP entertain at the Holiday Bizarre Blastoff Party in November.
The children of CHAP entertain at the Holiday Bizarre Blastoff Party in November.

Covering half a city block in the heart of Portland’s historic Pearl District, the 10,000 square foot art studio is open to the public through Christmas to peruse, create, and fascinate. Bring the kids — you and the kids will be entertained for hours! Come this Saturday from 2-5pm to volunteer or just make stuff at the Kiteboarding 4 Cancer studio day at CHAP. For more info, email tonia@kb4c.org.

KB4C Sets the Bar for Kiteboarding Events and Raises $62,000

Kiteboarding 4 Cancer Award Ceremony
On Saturday, August 25th, 2007, an event took place in Hood River, Oregon, that will forever change the future of kiteboarding events. There were no big name riders, yet hundreds came to watch. There was no prize money, yet riders spent months in preparation just to be eligible to participate. The line for event registration was like a scene outside of an Apple store waiting for the iphone release. And more money was dished out at this event than any other in kiteboarding history. This was Kiteboarding 4 Cancer, an event like no other, that raised over $62,000 for partnering cancer research and awareness organizations.
Kites Pumped up

Warm weather and steady wind throughout the day made for a perfect 1st Annual Kiteboarding 4 Cancer setting. 87 kiteboarders raced 7 hours for $15,000 in sponsor gear from Naish Kites, Slingshot Kiteboarding, Dakine, North Kiteboarding, Liquid Force, Best, Eclipse, Skywalker, and Jimmy Lewis. Florida’s Neil Hutchinson called the event, Full Sail Brewery provided the beer garden, Slingshot and Seattle Kiteboarding Center provided the food, and Dakine, Naish, Liquid Force, Slingshot, North and Best all provided demo kites and gear for riders in the event.

Kiteboarding 4 Cancer Sponsors

The KB4C fundraiser actually started in June, with kiteboarders raising money for KB4C partners The John Wayne Cancer Foundation, The Leukemia & Lymphoma Society, CureSearch: The National Childhood Cancer Foundation, and Children’s Hospital Seattle, to be eligible to win fundraising prizes and kite in the event on August 25th. The starting lineup for the kiteboarding derby on August 25th was determined by how early the kiteboarder started fundraising. Prior to the actual event, participating kiteboarders had raised $40,000 for the cause! Combined with a silent auction, live auction, sponsor contests, and a variety of other fundraising activities, the KB4C Kite Derby raised over $20,000 in one day for a total of $62,000 to be given to KB4C cancer research and awareness partners.

Mark around the buoy at KB4C

Kiteboarders came from as far as Switzerland, New Zealand, and Florida to be part of the event. Riders kited around two buoy markers; one upwind buoy and a downwind buoy, approximately 500 yards apart. Actual riding distance in tacks equaled approximately 2.5 miles, putting the top distance finishers at riding over 125 miles. The final results:

Top Fundraisers
1. Trevor Smith $5260
2. Lance Koudele $3000
3. Jim Stringfellow $3626
4. Tony Colburn $2430
5. Brett Edelen $1600

Top Distance Finishers, in laps:
1. Phil Holmstrand 51
2. Cory Roeseler 50
3. Alex Bloechinger 43

Top Women Distance Finishers, in laps:
1. Carol Bolstad 23
2. Marybeth Zingarelli 22
3. Keri Castle 19

Top Junior Distance Finisher, in laps:
1. Tucker Sherman 18

Musical guests Dyers Rocket out of Portland, and Energy out of White Salmon, Washington rocked the KB4C stage in front of spectators.

The band at KB4C - Dyers Rocket

More Kiteboarding 4 Cancer

“Thank you so much for hosting that awesome event! I would easily say that was the most positve vibe yet for the summer, heck the whole year. This was the best weekend of my whole summer. Thanks again.”

“Thank you guys for working so hard to get this event going. Best event of the year and the after party was awesome.”

“KB4C was so fun, and really great time..you guys need to be proud…This was a landmark event! The beers, demos, food, weather, prizes…and did I mention the SWAG!!!!???? Really cool…we have a special thing going on here!!

Racing around the buoy

“Wow… ABSOLUTELY WONDERFUL EVENT! Will be tough to beat… but YES… absolutely do it again next year!”

“I didn’t think there’s such a thing as well organized bunch of kiteboarders when it’s blowing and everyone is jonesing to get out. I encourage everyone to participate next year, it’s your chance to help such a great cause while having a blast.”

Kiteboarding 4 Cancer thanks our cancer research and awareness beneficiaries for being a part of this event as well as all of the sponsors and donors that made this event such a huge sucess:

And we can’t forget the after-party with Energy and Lifesavas at the River City Saloon!

Lifesavas

You can still get your commemmorative KB4C tee shirts on the KB4C Website!

Sandbar KiteFest Hip-hop “Energy” playing for KB4C!

He’s full of it, he brings it, and he’s playing at KB4C! Energy. You can check out his tunes at myspace.

Avery, aka Energy, played at the Hood River Sandbar KiteFest back in June, jammin’ to the pro team riders from Liquid Force throwing down on the slider in the Pro pool. It was insane, and so is he. Energy will be hanging with wild man and killer announcer Neil Hutchinson on the grandstand as he pumps up the crowd and the riders for KB4C on August 25th. Don’t miss it.

Energy at KiteFest