Wednesday, January 25, 2012

Check me out in Lexus Magazine!

The most underserved cancer group is those in their 20s and 30s. At First Descents Camp, former pro kayaker Brad Ludden helps these fighters thrive.





IT STARTS AS a low hum but grows into a roar as Brad Ludden, 29, and his friend, nicknamed “Tailz,” drift toward the rapids on the Colorado River. Tailz’s mouth is pursed with the determination of an athlete. Muscling his paddle, he works to keep the bow of his blue-and-white kayak pointed downstream in the confused water. With the chiseled jaw of a college quarterback, Ludden, 29, calls out guidance: “A couple strokes on your left! Now paddle on your right! That’s it, Tailz!” His own strokes look effortless, as he steers his own kayak smoothly down the rowdy white water—backwards.

Tailz’s real name is Neil Taylor, a 31-year-old former schoolteacher from Vermont. About two and a half years ago, Taylor was hit with the news that would change his life. The diagnosis: a brain tumor the size of an orange.

Surgery proved successful, but when Taylor woke up in the recovery room, he was blind. “Before I went blind, I was a total athlete, and I loved extreme sports,” he says. “There was such a huge void in my life because I can’t do that stuff anymore…. It’s a huge loss.”

But then a friend told Taylor about Ludden and his First Descents, a camp designed to teach young adults with cancer how to master kayaking. Ludden, from Montana, learned to paddle at age 6. A natural athlete, he later won the Junior National Championships and earned a silver medal at the Junior World Championships in 1999. Ludden also began running international expeditions, logging first descents (first kayak navigation on a white-water river) throughout Africa. He also began appearing on magazine covers and inked a lucrative sponsorship deal with Nike.

About that time, at the height of his career, Ludden’s Aunt Lori, in her mid-30s, was diagnosed with breast cancer, and the news rocked Ludden’s close-knit family. “Our way of coping was to start volunteering at a local pediatric oncology summer camp,” he says. Ludden’s mom helped with cooking, but Ludden didn’t know what to do—until he spotted a nearby lake. “My only way to communicate was kayaking, so I took all my kayaks up there and taught these kids how to paddle,” Ludden recalls. “And I just saw it working. You just saw it in their faces.”

Ludden was so excited by what he witnessed that he sought out volunteer opportunities at an organization that teaches kayaking to cancer patients. “But there wasn’t one,” he says. “I thought, that just doesn’t seem right. This is what I can give to someone. I was like, man, I have to do this.”

So in 1999, at age 18, Ludden founded First Descents. His plan: focus on campers ages 18 to 40 (like his Aunt Lori), because even though more than 70,000 young adults are diagnosed with cancer annually, this age group is the most underserved population of patients. Ludden moved to Vail, Colorado, where he worked feverishly during the kayaking off-season, organizing and raising money. In 2001, Ludden and friends hosted the first camp in Vail, teaching kayaking to 15 young adults with cancer.

The responses from the campers, their parents, and their physicians were astounding. It seemed Ludden, with zero medical experience, had stumbled upon a neglected part of the treatment process for cancer patients.

Though funding was tight, Ludden kept the program free for all participants. It continued growing, and in 2011, First Descents will offer 26 weeks of camps with 375 free spots in Vail, Montana, and Oregon, including a new rock-climbing program. To date, First Descents has served 825 young adults with cancer.

“It really picked up my spirit,” says Tailz. “I love kayaking, but it’s much deeper than that. Out of the 18 people in my camp there were five others with brain tumors. We’d all sit around the fire and laugh about things that you can’t laugh about with people who haven’t had cancer. It was so great to be around those people.”

Last year, Ludden retired from full-time pro kayaking to be Chief Mission Officer for First Descents, helping with fundraising and programming, and collecting his first paycheck after a decade of volunteering.

“They say every athlete dies two deaths: the day they retire and the day they die,” says Ludden. “But for me, retiring was like being born again. I’m more passionate about my career at First Descents than I ever was about being a professional athlete. And that’s saying something, because I really cared about pro kayaking.”

“To me, kayaking rivers is a metaphor for surviving cancer,” says camper Bethany “Marhaba” Winsor, a 30-year-old breast cancer survivor. “You can hear the running water before you can even see it. You don’t know what’s coming, but you know you’re on this path. It’s the same thing as being pulled through your diagnosis. All these people are telling you what to do, and you have no control over any of it. But just like when you come up on a rapid, you’re supposed to lean forward into it, and paddle on through. After First Descents, that became my mantra in life: lean into it, and paddle through.”

Read the full article: http://drivers.lexus.com/lexusdrivers/magazine/articles/Lexus-Lifestyle/First-Descents




Sunday, January 1, 2012

Preserve Our Potential



We are neither pediatrics nor geriatrics; we have unique needs - medically, developmentally, socially, and economically.
We have the right to have these unique needs recognised.
Like all age groups, we deserve to have our dignity, our beliefs, our privacy and our personal values respected.
Regardless of financial, familial, ethnic or other background, access to quality cancer care and age-appropriate support is a right, not a privilege.


Young people with cancer have the right to:

  • Receive education about cancer and its prevention including early detection
  • Be taken seriously when seeking medical attention and receive the earliest possible diagnosis and speedy referral for suspected cancer
  • Have access to suitably qualified multi-disciplinary medical specialists with significant experience in treating cancer in this age group
  • Information about and reasonable access to clinical trials and treatment that has been clinically trialled with people in their age group
  • Receive age-appropriate support including, but not limited to, psychosocial, community and palliative support services
  • Empowerment in making decisions supported by full and detailed explanation of all treatment options and long-term effects of the disease enabling them to actively influence their care
  • Fertility preservation, as well as information and counselling concerning short-term and long-term effects of cancer and treatment which affect fertility
  • Have access to specialised treatment and services in age-appropriate facilities alongside their peers
  • Financial and practical support to minimise the burden of the disease during treatment
  • Elimination of all forms of discrimination, during and beyond treatment, in education, vocation and insurance, or in the community.

Preserve our potential.

Mortality rates for the 18-39 demographic have not improved since the 70s. Unacceptable!

Friday, December 2, 2011

Calling all Young Adult Cancer Survivors!

First Descents has announced their 2012 Program Schedule. Such an exciting time for those of us in the FD family and we want to reach all young adults who have heard the words, "you have cancer." So please, pass this information along to anyone between the ages of 18 & 40 who has been diagnosed with cancer at some point in life. Visit the website for more information on the programs »


Just apply! You know you want to!

Tuesday, October 25, 2011

Dear Sugar...


I get a tremendous amount of inspiration from the anonymous blogger Dear Sugar featured on The Rumpus. I highly recommend you check out some of her archived postings.

My favorite include:





Wednesday, October 20, 2010

You're Doin' It Dude!

I went to Denver this weekend and got to spend some time with my First Descents family. They threw the most amazing 80s ski party & around 700 people came out decked in neon attire and raised a ton of money for a great cause. While in Denver, I joined a great group of FD alums and supporters who were running in the Denver Rock 'n' Roll marathon. I ran with 3 awesome ladies in the relay & had a blast!! I did pretty well considering that I am not used to running at 5000 feet above sea level.

It was great to meet many more members of the FD fam & I continue to be inspired & encouraged by all of them!!



Monday, July 26, 2010

Into the After After Land

There is this great abyss between treatment and finding your “new normal.” When treatment ends and you start to wonder what is next, you fall into this abyss, and you just sort of float around and try to latch on to pieces of your former self. As you are trying to adjust to checkups instead of infusions, I found it was sometimes possible to forget that I was bald only months before. I’d hang out with friends and laugh, and in those moments, the burden of being constantly aware of your condition was alleviated. Quick enough though, someone would complain about their monthly visit from Aunt Flo, and I would be reminded that I won’t be seeing Aunt Flo for 3 more years. When my eyeglasses fog up at the bottom because heat is radiating from my cheeks, I remember that I am a survivor. It is these small constant daily reminders that make you more aware that you are in the “after after” period of your survivorship. After diagnosis, after treatment. People give you all kinds of advice about the stages of diagnosis and treatment. Well in my “after after” – in my abyss – where is the advice for that?

So far, I’ve found that you make it up as you go along. I find myself making constant gut checks. I think about where my head is…. How am I feeling today about where I am in my survivorship? Is my internal compass pointed in the right direction? Am I being fulfilled in my life? The answers to those questions and the many others I ask myself vary from day to day, but I can say as a 26-month survivor that every time I take a reading of my state of mind, I find another piece of the puzzle that makes up my “new normal.” Yes, the fear, the worry, the isolation, the anger, and the wondering that are present deep in the abyss, creep back into my mind when I allow them to be explored. And as survivors, we should explore them, and seek direction if we need to, because I know that my “new normal” puzzle is far from complete.

I started a clinical trial in February, and despite the lactose intolerance that the pills cause, my body has adjusted rather well to the side effects. The best side effect of all is a tiny bit of peace of mind. Strange to think that being on treatment again brings comfort, but it does because it provides an element of structure again in the chaos that is the abyss. I do occasionally worry about the day 6 months from now when I have to stop taking the pills, but for today, I am going to keep gathering my puzzle pieces. I hope that in the coming months, I will have enough of the pieces of my “new normal” gathered and tucked away in my mind that I won’t be fazed one bit by letting go of my pills and floating back into the abyss.

Friday, July 16, 2010

Tick Toc

Sometimes it is really really hard to stop viewing your life in the increments between scans and checkups. I know exactly when my 3 months are up and it is time to go back to the doctor for bloodwork. Every 6 months, I get a mammogram. Well, two weeks ago, I had a pretty big "oh crap!" moment. I went in for my mammo and while I was waiting to speak with the radiologist and hear that everything was A-OK, the mammo tech comes up to me and says, "Hey, I need to get a few more pictures."

Screeeeeech!

My worst nightmare. Hearing those words. I was fozen. Oh crap. What the heck does that mean?!? She told me that they saw something on my films so that warranted taking close-ups of my cells. Ugh.

After a few more pictures, I was shown my films and the white spots that appeared in the area where my cancer once was. Uh oh. What is that!?!

They told me I could wait 3 months and come back for another mammo to see if the spots had changed, or I could biopsy it. The only way to know for sure is a biopsy. No way I was waiting 3 months. So, I went in to have a biopsy. Waiting for that appointment was agony. I was instantly flung back into that period of infusions and scans that I thought I was starting to finally put behind me. The biopsy itself was pretty painless, although it did sort of feel like getting your ear pierced, except ya know, they didn't stick the needle through my ear.

Four days later I got the results. I noticed that I had a missed call and a new voicemail from my doctor. The waiting was killing me and I wanted to know if I was going to be able to move forward in the new direction I have charted, or if I was going to be stuck back in the past two years again. As I started to listen to the voicemail, I swear my heart stopped beating. I was completely still as I listened to the best words a person can ever hear from their doctor. She said "You don't have to call me back...."


Whew! Great news!

Thursday, July 1, 2010

Spreading the First Descents Love in Texas!

Last weekend in Dallas, I had the honor of attending and speaking at a First Descents dinner party. If you haven't heard of First Descents, check them out! I had the experience of a lifetime at the Wisconsin kayaking camp in June 2009.

FD volunteers Scott and Anna Ritter hosted the dinner party to promote the FD message. We gathered at the beautiful home of Art and Linda Alexander. About 45 FD friends and family gathered for dinner and wine to discuss the FD programs for young adult survivors. FD Founder Brad Ludden and Board Member and Executive Director Joel Appel were there to provide details on the FD mission and programs, and guests got to view part of the new documentary about FD called The River Ward. (Click here to view The River Ward trailer)

I am attending the Vail kayaking camp at the end of August, and I can not wait to get back on the river! This year I am going to get my roll!!