A Long Time Ago in a Trailer Far, Far Away

2004 YSC Tour de Pink

Tour de Pink’s Inaugural Riders. From left to right, Peter Finder, Matt Purdue, Noel Knecht, Matthew Rivera and Josh Jacobstein.

Most YSC stories don’t begin with four grown men sleeping together in a cramped trailer parked on a gravel driveway. But this one does. As the story goes, this bizarre episode is one of the legends of the first-ever Tour de Pink ride.

In 2004, long-time YSC supporter Lisa J. Frank and I hatched the crazy idea of a long-distance bike ride to raise awareness and funds for YSC. That first ride started at the Wellness Community near Boston and finished at the NYU Cancer Institute in New York, covering 220 miles in four days. To keep expenses to an absolute minimum and ensure that YSC received almost every penny we raised, we vowed to cut corners whenever possible.

Only five riders took part: me, Peter Finder, Josh Jacobstein, Matthew Rivera and Noel Knecht, a young breast cancer survivor diagnosed at age 32. Lisa trained her butt off and raised a ton of money, but, sadly, couldn’t ride because she was diagnosed with a recurrence of breast cancer less than two months before our ride.

Along the way, we suffered rain, cold, headwinds and … how shall I say this? … less-than-ideal accommodations. One night we stayed at a family’s small rural home in southern Massachusetts. Noel was given the guest bedroom, while we four guys stuffed ourselves into sleeping bags and crammed into a pop-up trailer in the driveway. Needless to say, none of us felt like Sleeping Beauty the next morning.

The next night, we stayed at a larger house in central Connecticut — but one not quite large enough. We slept on mattresses on the floor, sharing the living room with each other and the family’s big dog. Our rest stops were whatever convenience stores we could find. Our SAG fleet was one rented SUV, driven from town to town by a network of volunteers. But somehow, someway, we all finished the ride in one piece. We only lost Noel once, and that was just for a few minutes. And we even raised more than $26,000 for YSC!

Eight years later, our Tour de Pink events are professionally managed, and multi-day riders get to stay in comfy hotels and eat catered food … a far cry from our first ride! In 2012, YSC will host four outdoor rides (East Coast, West Coast, Atlanta and Northern Minnesota) and two indoor spinning events.  Tour de Pink will welcome more than 1,400 riders and volunteers from all over the country. More important, the concept that raised $26,000 that first year now generates more than $1 million for YSC annually. The vast majority of that money goes toward providing free programs, resources and educational materials that help ensure no young woman ever has to face breast cancer alone.

Thanks to the hard-working YSC and G4 Events staff members, courageous riders, selfless volunteers and thousands of individual and corporate donors, who have taken Lisa’s and my idea and run … well, ridden … with it!

Today, Lisa is the President of YSC’s Board of Directors and Co-Chair of Tour de Pink. I remain a volunteer Co-Chair of the events.

This October, YSC CEO Jennifer Merschdorf, who was kind enough to let me hijack her blog for a day, will join us for her first Tour de Pink ride. I’ve promised her she won’t have to sleep in a trailer.

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Categories: Guest Bloggers

What You See Is What You Get

Problems and Solutions Street SignThis spring I met with Cortés Saunders-Storno, Director of Alumni Relations at the University of San Francisco, where I earned my MBA in 2004. I hadn’t been on the campus of Lone Mountain since I graduated. It was a blast backward in time!

My experience in USF’s executive MBA program changed my life. While that sounds dramatic, it isn’t meant to be. I was a different person at the end of the program — and I could never go back.

People probably feel that way at any school they attend. I’m not claiming USF is that different from other schools and we know that timing is everything, but for me in my life at that moment — it was exactly what I needed.

When I walked through those doors again, I was consumed with memories I had forgotten … memories of working full-time and going to school full-time at night and on the weekends — and the feeling that I would never come up above water.

Cortés was wonderful and we clicked instantly. One thing she said stuck with me — she expressed that what she liked most about meeting me and hearing my story is how real it felt. That not everyone goes along a path that is perfect — sometimes you have to fall to your knees and beg life to stop throwing bad things at you — and then have the strength and determination to rise to the next level.

I guess that’s kinda my thing. I am a normal person. I have educated myself and paid my dues in the business world. I was diagnosed with breast cancer at 36. And now, I write this blog in an effort to be transparent to our community.

There are no smoke and mirrors with me. What you see is what you get. I’m not perfect and I make mistakes, but I promise to always learn from them and be the best person I am capable of being each and every day.

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Words of Wisdom

2012 C4YW Group PhotoMy first week as CEO of YSC, I received an email that I will never forget. It was from one of the co-founders of the organization, Joy Simha. I was only eight months out from diagnosis when I was appointed CEO of YSC and still actively in treatment.

Joy had already spent a great deal of time that week educating me on the history of the organization, but the words in her email had a message to convey that was far more significant to me.

I printed out that email, and, to this day, it hangs above my desk so all the staff of YSC can read it.

“When we are diagnosed with breast cancer, we learn about how to help ourselves. After we go through treatment, we are done helping ourselves. When we learn about the science of breast cancer, we learn how to help all women. We can’t sacrifice one for another or cure only ourselves. Now we start working for the community. It is not about my cancer or her cancer or my disease or her disease. It is about doing what is right for the majority of those living with and dying from the disease. We sit around a table and share our personal stories when they are relevant to illustrate a point or highlight some data we are discussing. We do not answer a scientific question with anecdotal evidence. We are part of a community, and we do whatever is necessary to benefit that entire community.”

– Joy Simha
YSC Board Member and Co-Founder

Thank you Joy, your guidance and friendship mean the world to me.

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It’s All In The Name

Elephant ImageMy first task in making my fantasy to do a three-day bike ride from Philadelphia to Washington, D.C., a reality was to come up with a name for my YSC Tour de Pink team.

As some people know, the elephant is a symbol I use for my own cancer. When I was diagnosed, an imaginary “pink elephant” was the way I communicated how I was doing to the people I love, since I had difficulty articulating my feelings. Now, almost two years later, my body is a wreck from hormone treatments, and I sometimes feel as though I’ll never live without pain again.

I have decided that, in forcing myself to do the unthinkable (riding Tour de Pink), I’ll take my body back from cancer. To me, it’s like punching cancer in the face. But, this task in front of me is so much larger than a “pink elephant” … there’s no way a “pink elephant” could accomplish this. This is WAR against cancer, and it needs something much stronger, meaner and more serious than a “pink elephant.”

So, I did some research on fighting and warrior elephants, because, let’s be honest, this IS a war, and I feel like armor and a war-like mentality are needed. I came across this and found it inspiring:

An important aspect of the war elephant was its psychological impact upon the opposing force (CANCER). A certain part of every battle was fought in the minds of the armies. Elephants would always inspire confidence in an army (ME) in which they were a part, while they would have the opposite effect upon the enemy (CANCER) — especially if the enemy soldiers had never faced these animals.

I need a bigger elephant. I need the elephant of all elephants to guide and push me through this fight. My “pink elephant” will not do.

I have decided to name my team: Airavata.

Airavata is a mythological white elephant who carries the Hindu god Indra. Airavata is the king-god of elephants, and some call it the fighting elephant. An imaginary kick-ass king elephant that can do anything???!!! How perfect is that?

With my husband riding by my side, wonderful friends and Airavata with me on Tour de Pink … how can I fail? It’s impossible!

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Categories: Taking my Body Back

Turning Cancer Into Something Beautiful

Treasured Chest ProgramAs a breast cancer survivor, it’s hard to remember what it felt like to not think about breast cancer … or that being diagnosed at a young age was even possible. That stretch is even harder for me now that I’m YSC’s CEO.

YSC recently created a formal partnership with the Keep A Breast Foundation (KAB), based in Southern California. KAB’s mission is to help eradicate breast cancer by informing young people about methods of prevention, early detection and support. To me, it seemed like a no-brainer to form a partnership, since our two organizations are more powerful working together than separately.

The program that YSC and KAB will be collaborating on is the Treasured Chest Program. This program is all about respecting the beauty of a woman’s body. Until my trip to KAB’s office, I got its impact in concept, but I have to be honest … I didn’t see how cancer could be beautiful … and certainly not my cancer.

The concept of breast casting isn’t new, but everyone does it in different ways, with different intentions. KAB does an incredible job of combining artists and survivors to raise awareness that young women can be diagnosed with breast cancer … and bring the human body’s beauty back to survivors.

This partnership became real for me this past spring in a way I wasn’t expecting.

Shaney Jo Darden, the founder of KAB, asked to cast me when I traveled to KAB’s office to shoot this video to help promote the partnership between our two organizations. I’ll be honest, I hardly slept the night before, I was so nervous.

After a breast cancer diagnosis, you are used to people looking at your breasts. But … what if the outcome of the cast was worse than my perception of my new body? What if my breasts looked strange or not “normal”? Would I be able to handle someone touching my body that much?

In the end, if I was going to offer this program to the women of YSC, then I needed to experience it for myself … so that’s what I did.

The experience was actually invigorating — it made me feel like I was a part of art being made. I felt comfortable and increasingly anxious to see the end result. When we finally finished and the cast was removed, I watched Shaney Jo do the finishing touches as though she was working on a sculpture for all the world to see.

For the first time since my body was altered by cancer, I saw a piece of art. Art that was inspired by me.

Because of the Treasured Chest Program, I saw my cancer create something magnificent, and for that experience, as a survivor, I will always be grateful.

Visit the KAB/YSC Treasured Chest Program page on Facebook.

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In Living Pink

In Living Pink 2012

Top: 2012 Benefit Committee. Bottom left from left to right: Karen Kennedy, Vice President YSC Board of Directors; Lisa J. Frank, President YSC Board of Directors; Jennifer Merschdorf, YSC CEO. Bottom left: Jennifer Merschdorf, YSC CEO and Event Host Chris Wragge, CBS News. Photos by Thos Robinson/Getty Images for Young Survival Coalition.

What does “In Living Pink” really mean? I think that’s a fair question. In a world where pink ribbons rule, what does it mean to “live pink”? I have a unique perspective on this and feel it’s important for me to express it.

Since being diagnosed with breast cancer at the age of 36 and becoming YSC’s CEO, I’ve had the honor of attending YSC’s “In Living Pink” galas around the country. And while they’re all different, they all share a common purpose: to celebrate young women affected by breast cancer.

When a young woman is diagnosed with breast cancer she can lose her hair, her breasts, her health, her job and/or her sexuality. It’s not fair… and shouldn’t happen. But, it does.

Each and every young woman that has been diagnosed with breast cancer has fought to be the person she was before her diagnosis. She wants to be in a room full of people and feel normal. “In Living Pink” makes that happen.

At YSC “In Living Pink” galas, young women affected by breast cancer and the people they love get dressed up to celebrate life together. They dance, they play and they create an energy that only a room full of people confronted with disease too early in life can generate. You can feel this power at our galas around the country, and it’s amazing to experience.

Yesterday, we hosted YSC’s national “In Living Pink” gala GRAND SALON: Monte Carlo Casino Game Night at Capitale in New York City. I was honored to present Lisa J. Frank with YSC’s Kristen Martinez Legacy Award for extraordinary volunteerism and dedication to YSC’s mission to ensure that no young woman faces breast cancer alone.

No one I’ve met during the last year embraces this national “In Living Pink” community more than Lisa. A Founding Member of YSC, Lisa attended YSC’s first meeting in 1998 and has dedicated her life ever since to all the young women living in theU.S.who have been affected by breast cancer. She works hard to remember the name and story of every survivor she meets — a quality I admire beyond words. She does this out of respect for their individual stories because each and every young woman affected by breast cancer has to fight through their own experience — and while we’re part of a powerful community — it’s important to acknowledge each unique story and what every woman, as an individual, has been through.

Lisa is much more than an exceptional attorney, partner, friend, sister and daughter — she is my mentor. For the past year she has listened, guided, walked beside me … and led me when I needed it. I trust her beyond words. As YSC’s Board President, I know she’s as determined as I am to do everything possible to support young woman in this country, so no young woman facing a breast cancer diagnosis ever has to feel alone.

While I am not a huge fan of the color pink, “In Living Pink” is a way to show the world that we’re still very much living … and we look pretty darn good “living in pink”!

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Categories: YSC SYNC - Survivors

Hitting the Five-Mile Mark

The first day I sat on the stationary bike at the gym I thought to myself, “Imagine how cool it would be if I could ride five miles on this thing.” And, I was serious … that would be so cool!

So day after day, I went to the gym, and tried to hit that mark in 20 minutes. Obviously, if I gave myself ALL DAY I could reach five miles, but I wanted to do it in 20 minutes.

First, I started at level one … and I thought I was going to die!!! My legs burned, and my knees ached. But then a few days later, I was bored at level one and moved to level three. Then, a few days after that, I reached level five.

Within a couple of weeks, I felt comfortable playing around with the levels and went up to level 10 for a few minutes, before dropping back to level five, as though I were on a hill. I think the words that came out of my mouth were, “You have to be kidding!” The machine suddenly lost its free-spinning feel and felt more like a rock tied to my feet as I climbed that virtual level-10 hill. But even then … I didn’t get to five miles.

And then it happened. I decided to do the “random hill” setting for my 20-minute ride. I was not as surprised when the machine went into hill mode this time and managed to keep my words of dislike inside, so as to not disturb the other people in the gym. I put on my inspirational music, thought about the young women I know fighting breast cancer, and powered myself up those virtual hills … And guess what happened? I rode 7.25 miles in 20 minutes!!!

OH MY GOD!!! I think I even gasped out loud when I realized what I had accomplished.

Now, I know that 7.25 miles is a far cry from 200 miles, which is my goal, and I am on a stationary bike. But, hey, I am proud of myself … and that is worth celebrating.

The skinny cancer girl with no muscles … is getting the hang of this workout thing … WATCH OUT!!!

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Categories: Taking my Body Back

Speak Up and Make a Difference

YSC at the National Breast Cancer Coalition Advocate SummitWhat is an “advocate”? This word has a different meaning to everyone. I became familiar with the term at the national Sierra Club, where I worked for many years. I also learned the importance of using your voice and democratic right to hold your elected officials accountable. Sound easy? Have you ever tried it?

Have you ever been to your state capital and asked to meet with your Representative that you elected? Have you ever been to the U.S. Capitol and talked to your members of Congress about an issue that’s important to you? Most of you I imagine will say, “no,” and my question to you is “why not?” Really, why have you never spoken with the person you elected? As a society, why do we hold our local grocery cashier more accountable to give us the correct change for a pack of gum than we do the people we elected to create the laws that govern us?

After being diagnosed with breast cancer at the age of 36, I transitioned my career from environmental causes to the breast cancer space. So, it seemed only natural for me to participate in this past weekend’s National Breast Cancer Coalition (NBCC) Advocate Summit in Washington, D.C. (#NBCCSummit)

The NBCC truly is a coalition; it is made up of breast cancer groups from all over the country, which allows them to come together as one united voice to end breast cancer. YSC is a strong member of the NBCC. It is critical that we continue our active participation to ensure that the voice of every young woman with breast cancer is being heard.

Awareness is important. Every day of my life is dedicated to raising awareness. But sometimes you just need to say: “This needs to stop!!! No more women should die!!!” That’s what this past weekend was all about.

Who in the world would not be for ending breast cancer, right? Well, I bet you didn’t know that, right now, there’s a bill under consideration in the U.S. House of Representatives called the Accelerating the End of Breast Cancer Act.

This bill has NO money attached to it. It’s a simple request to set up a committee to ensure we’re able to end breast cancer within the next eight years. In my wildest dreams, I cannot imagine how someone would be unwilling to back this, but, after spending a day on Capitol Hill, it became obvious to me that not all the members of Congress are willing to support women affected by breast cancer and get behind this initiative to end breast cancer by 2020. Amazing!

We’re all frustrated with what’s happening in Washington these days — on so many levels. However, it’s important that we do not let that frustration prohibit or distract us from participating. It’s now more crucial than ever to speak up. Call your Representative or Senator and make sure he or she knows you’re watching and not afraid to hold him or her accountable.

It made me proud to represent YSC on behalf of NBCC this week. I feel energized and inspired to raise my voice on behalf of all young women affected by breast cancer. But, I alone am not loud enough … I need all of you to join me!!!

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Dream Big

Dream BigThe only place I still feel young and “normal” is in my dreams. This is the best way I feel I can describe my experience with breast cancer as a young woman.

Every morning as I wake up and remember that this has happened to me, I begin my fight against the pain and the sensation of being 85 years old. That is cancer to me.

Speaking of dreams, this morning I dreamt I was riding a bike. And, I think I can say with 100% certainty that I have NEVER dreamt about riding a bike. Even in my subconscious, my brain couldn’t think that was possible. I might dream of childhood friends flying through space while reading a book and talking to pink elephants — that would be normal in a dream. But, me on a bike? It is too far-fetched.

But not last night. I have thought enough about riding Tour de Pink® that I have convinced my subconscious that it’s possible.

And then I woke up … and my body ached and hurt like it does every morning. Thank God cancer has not followed me to my dreams. So … deep breath … some stretching … a positive attitude … and make some coffee. I can do this … and I will!!!

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Categories: Taking my Body Back

But I Don’t Even Like Bikes

YSC CEO BlogI don’t even like bikes. I never learned to respect them and always felt like they didn’t respect me. So why in the world would I decide to ride 200 miles from Philadelphia to Washington, D.C. on a bike?

Actually, my decision has nothing to do with bikes or wanting to take part in the swim/run/bike triathlon craze that so many people I know are in. I am doing this because of cancer.

One of the first things my oncologist told me after my bilateral mastectomy was that I had to start exercising. I rolled my eyes at her. Yeah, yeah I know, exercising is good for you. Whatever. I was more focused on trying to get my life back to “normal” after having my sense of normalcy ripped away from me with a breast cancer diagnosis at the age of 36.

During the next year, doctor after doctor, and friend after friend told me I should start exercising. I ignored them with determination. I remember telling a friend at one point, “If one more person tells me to exercise I am going to scream.”

For me, that first year was about getting my life back to normal — the way it was before. I never exercised before — why would I start now? I also had no idea what type of exercise to do. I hated riding bikes, the gym sounded like a pain, and running was boring. Yoga was suggested often, but it is such a scene in NYC and I didn’t care to sit in a room with a bunch of strangers while I hot flashed.

As I completed my first year of cancer, I took a close look at myself. I weighed my success in getting back to normal and realized I had failed. The hard realization that I had to find a new normal was hard to swallow. My body had become so weak from all the surgeries that I was finding it hard to walk up a flight of stairs.

Crap. My doctor was right. Now what?

This past fall, as I was celebrating my first year of cancer behind me — I had the unique pleasure of attending YSC’s Tour de Pink (TdP) bike rides as a spectator. Founded by YSC in 2004, our Tour de Pink® events present an opportunity for survivors and supporters alike to come together to raise awareness and money for the more than 250,000 young women living in the U.S. today who were diagnosed with breast cancer before their 41st birthday.

My job as CEO includes attending these events, and, while I felt eager to support the riders in any way I could, I never had any intention of doing the rides myself.

The East Coast ride, which took place from September 23–25, 2011, was my first TdP as a spectator and I was overwhelmed with the power of the event. The community of supporters and survivors was incredible, but deep down I knew it wasn’t for me.

A few weeks later I went out to California for the October 14–16 West Coast ride.

Maybe it’s because I’m from California. Maybe it was because I was physically in such bad shape and getting fed up with my body. Or maybe it was because it was such an outrageous idea, at that ride I began to think …. “Maybe I can do this.”

So one month later, after careful consideration, I made a commitment to take my body back from cancer and join my fellow survivors and supporters in the 2012 Tour de Pink challenge.

I have a long way to go, since I can’t walk up a flight of stairs without exhaustion. But one thing I am is a fighter and I have chosen my weapon. So, watch out cancer — I’m pissed off and coming to get you!!!

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Categories: Taking my Body Back