This is a well-written and very authentic article by Dana Jennings at the New York Times.  He has beaten back an aggressive form of prostate cancer is now facing the more subtle, but no less difficult challenges that are common in post-treatment survivors.  Read it here…

Yale Cancer Center published a very nice article about the Connecticut Challenge in the fall issue of their quarterly newsletter, Centerpoint.

You can see the article here:  Centerpoint

When you look at a cancer survivor, you don’t see depression, but as this beautifully written, poignant New York Times article points out, it’s there for many survivors, even long after being declared “cancer free.”

Read the article at this link.

At the 2008 Cancer Survivorship Symposium at Yale Cancer Center the focus was on Psycho-Oncology.  The first speaker, Tish Knobf, from the Yale School of Nursing, hit everyone over the head with a staggering statistic:  over 50% of breast cancer survivors experienced unusual emotional distress six months after completing their treatments.  That figure improved to 33% after one year.

This article from the Boston Globe describes the post-treatment depression of former Major Leaguer and current Red Sox television analyst, Jerry Remy, who underwent surgery last November for lung cancer.  As the article states, you might think someone would be euphoric after beating back a deadly disease, but the reality is often just the opposite.  This is a good article about psycho-oncology, a very important and fast-growing area of cancer survivorship.

For a few years I have been struggling with how we can stay off of the main roads on the 100 mile ride and make it feel like are always riding in the back country.  One of the current sections, which quite busy, is on RT 202 up to RT 45 around Lake Waramaug.  The road is fine and there is a nice shoulder, but there is a lot of traffic late morning on Saturdays.  To get around that we explored extending the ridge section after you ride over RT 67 near Bridgewater.  Last Saturday we did the 100 and found there is a beautiful section of road that is relatively flat, well paved and very remote.  This section comes off of the ridge on a straight down hill that is more gradual than our current decent (so it is safer) and drops us off right at the intersection of RT 45.  Therefore you circumnavigate the entire 202 section.  Have a look at it on the map and if you feel adventurous check it out.  It’s a beautiful ride! JR

http://www.connpost.com/ci_12978747

This article articulates the need for a survivorship network in the Connecticut.  There are so many fantastic resources for survivors; this article shows that need through one very courageous survivor right here in Connecticut.  Please read the article.

For the first time this year I volunteered for the Connecticut Challenge, a charity bicycle ride for cancer survivors. It was the first time I’d been involved in a philanthropic effort outside of a work or family connection. I’d never considered myself a “cause” person. I’d always maintained people made a difference every day in the way they treated their family, friends and most importantly, the world at large.

But as I’ve gradually become more financially settled, I’ve begun contemplating ways to better utilize my time and resources. Both my parents are cancer survivors. After being diagnosed with uterine cancer, my mother had a complete hysterectomy. Since finishing chemotherapy last summer to eradicate his colon cancer, my father has slowly returned to his robust self. Driving home from my parents’ house this past May I reflected on how far he’d come. I began thinking about doing something to help other people whose families have been afflicted by this unnervingly common disease.

Literally moments later I spotted a Connecticut Challenge sign. As soon as I got home I googled the name and discovered the Connecticut Challenge organization. While I’ve never been much of a runner, I’ve always enjoyed five-to-ten mile jaunts on my road bike. While raising a minimum of $750, (making up the difference if unable to meet the goal), exceeded my ability to participate, I still wanted to volunteer. I registered online and pledged to raise a modest $100. A few weeks later I received my assignment: operating one of several aid stations set up along the 12, 25, 50, 75 and 100 mile routes.

The Connecticut Challenge is unique in its dedication to survivorship, a relatively new medical specialty focusing on optimizing survivors’ post-treatment lives. Proceeds benefit survivorship programs at Yale New Haven Hospital, Stamford Hospital and Saint Vincent’s Medical Center in Bridgeport. In addition to enduring the potential for reoccurrence, many survivors develop ancillary health problems, from heart disease to sexual dysfunction to depression.

In the years since her hysterectomy, my mother has continued to face medical challenges. I remember how wrenching it was to see my father, once famously hearty, become so weak after his colorectal surgery he couldn’t lift a pail of water. My father had always enjoyed putting up our outdoor Christmas decorations, stringing colored lights and positioning our wicker reindeer so it looked like they were kissing noses. During Christmas 2007, however, shortly after his surgery, our outdoor (and many of our indoor) decorations stayed in boxes.

In the spring my father spent the time he’d once enjoyed meticulously landscaping receiving twice-weekly chemotherapy treatments. Despite working full-time, my mother and I tried to visit him as often as possible. I loved meeting his new friends, fellow fighters from varied backgrounds joined in a united front. Several of those people have since passed on. My father, who’s remained blessedly healthy, paid his respects to each one.

In response to my first fundraising email blast, one of my friends asked why they should give money to people who had actually survived. I began talking about some of the residual effects of treatment. “Why should they be depressed?” he said, laughing. “They made it!” It was a very honest reaction. I chuckled back. “Everyone’s experience is different,” I replied simply.

After registering at the Challenge’s headquarters at Greenfield Hill Congregational Church, I loitered briefly by the launch area. A record-breaking number of approximately 500 riders participated this year. It was quite a spectacle seeing the mass of cyclists together right before take-off. Emotion surged in my throat as I watched a young teenager take the podium. I was impressed by their ability to speak with such eloquence to an audience of adults, many of whom would rate public speaking a fear greater than dying. I smiled at the irony.

On the way to my aid station I noticed several signs bearing statistics: one in two men and one in three women will suffer cancer at some point during their lives. I also noticed a lot of inspirational signs (“Never Give Up!”). Handcrafted flags honored everyone from survivors to people battling the disease to those who had lost their fight. I sent a silent prayer to a relative currently battling the illness.

My aid station was on the sweeping grounds of one of the organization’s founding members: Jeff Keith, a survivor. We had plenty of supplies, from first aid kits to bags of ice; Poland Spring water; Gatorade; wheat bread; peanut butter; grape jelly; mixed nuts; M&Ms; pretzels; Fig Newtons; bananas and oranges. Several children joined in making PBJs; later they helped track the identification numbers of the 200 riders who stopped during their 25 and 50 mile treks. We kept busy the whole morning: slicing fruit, preparing fresh sandwiches, refilling snack bowls and beverage coolers. “Thank you for doing this,” we heard over and over. “Thank you for riding,” we responded, equally gracious. The morning was filled with this repetition: Thank you. No, thank you.

The riders remained amazing throughout. One cyclist arrived with a jersey matted with dirt and blood; he had wiped out on a sharp turn a few miles back. There were gashes on his shins and elbows. He refused any kind of treatment. “I only live a short distance from here,” he assured us. Another woman, however, got a deep cut on her calf she allowed me to provide ointment and bandages for. Another fatigued rider asked if we had salt pills (illegal to provide without medical authorization). He had to settle for pretzels and Gatorade. I laughed when another rider confessed he’d accidentally consumed a packet of “butt gel,” mistaking it for an electrolyte substance. I marveled when another man took off his helmet and sweat literally poured out like a flood.

I realized I enjoyed volunteering probably as much as I would riding. Next year’s rider costs are expected to be lower. Most of the reason the cost has been so high is logistical. Only a limited number of cyclists can safely enjoy Greenfield Hills’ narrow roads at one time. Additionally, large numbers couldn’t be properly accommodated on headquarters’ modest grounds. Finally, massive amounts of participants could make overhead costs perilously steep.

Nevertheless, I’m looking forward to Connecticut Challenge becoming more inclusive to survivors and supporters of more modest economic means. I plan to beat the $100 I raised this year. Volunteerism can be habit-forming, and I can’t wait to do it again.

- Larissa Lytwyn, CT Challenge Volunteer, 2009

I didn’t ride alone!

Although I was the lone recumbent rider in the 2009 Connecticut Challenge, I didn’t ride alone. Many times along the 50-mile route, I couldn’t see another rider ahead of or behind me, but I didn’t ride alone. No, I wasn’t part of a team, but I definitely didn’t ride alone.

I cycled with the memory of my sister, Kim, and the presence of her indomitable spirit gently reminding me I didn’t have a clue what real pain or fatigue felt like. I rode with a clear memory of my Aunt Marge’s face, with its ever-present smile. As I downshifted and slowed to a crawl up the steeper climbs, I felt the invigorating push of donors, supporters, family, and friends around the world who joined in the effort. Some, in the midst of these difficult economic times, couldn’t make financial contributions, but they powered me with their encouragement and prayers. Some I haven’t seen in years gave generously and were happy to use this event to reconnect. One I just met outside a Starbucks during training. Flying down the descents, I felt power from the liberating wings of the survivors I am privileged to know and honor–my mother, Marilyn; my cousin, Shelly; my pastor, John; a colleague, John; and friends, Jen, Lucy, Micheline, Geoff, and Chris. Sharing the road with 479 other riders, and united in purpose with all the volunteers, I felt very connected by a strong sense of community.

Seen as an individual rider, many would have perceived I was all alone—but from my perspective, I definitely didn’t ride alone!

Jeff

Why I ride?
When I joined the first Connecticut Challenge in 2005, I was a twenty-two year-old high school teacher and an avid cyclist, runner, and swimmer.  I had no special connection to cancer, and I had never heard the word survivorship.  Now, five years later, I have dedicated my life to working for cancer survivors.  My story is sometimes surprising to folks; I don’t have an obvious connection to cancer.  I am not a survivor, and no one in my immediate family is a survivor.  I have friends that are survivors, but by and large, I have met them through my work.  I am extraordinarily odd; my life is almost completely cancer free.  It is sometime surprising to others that I have such a passionate commitment to survivorship.

Since 2005, I have run across the country to raise funds and awareness for cancer survivors, obtained a graduate degree from Johns Hopkins specializing in cancer survivorship research, and returned to work directly with the CT Challenge to develop the new CT Challenge Survivorship Network.  In fact, now I work for a cancer survivorship-related study at Johns Hopkins, and I work for the CT Challenge.  At 27, I feel incredibly lucky to have had these experiences.  They have all been made possible by the extraordinary passion survivors have instilled in me.

My commitment to survivorship has been much like an actual Connecticut Challenge Bike Ride or my run across the country for cancer survivors.  I started with inspiration provided to me by the Ride’s founders, Jeff and John.  When they first approached me about the ride in 2005, they told me about the new ideas behind survivorship, and I was inspired and hooked.  So I started my “ride.”  Their passion got me to the first rest stop, where I met more survivors and heard more stories.  Each “rest stop” has been an opportunity to learn more about survivorship – both from the research and anecdotal/personal stories.  Those survivors who have served as my rest stops have inspired me to learn more and get more involved.  Just as rest stops on the CTC course are refueling zones supported by important volunteers pushing us onward, milestones in my career have been marked by survivors who have opened their lives to me, inspiring me to keep working for other survivors.

So why do I ride?  If riding is taken to be actual riding on the day of the CT Challenge and metaphor for working for survivors on the other 364 days of the year, then the complicated answer is that I ride for next inspiration.  I ride because there are 11 million American cancer survivors, and survivorship might just be the most important health challenge we face.  With the number of survivors growing and the care services provided to them not catching up with the growth, there are so many survivors who need our help, and like riding, help can be quite simple.  It can be as simple as turning a pedal.