Boston and the LFS conference!

Hotel view of the city!

Duck Tour! 80 minutes of sightseeing on land and in water!

Dinner at Cheers on Beacon Hill!

Mom and I dining at Cheers!

The Li Fraumeni Syndrome conference, and our weekend in Boston, was wonderful! It was a whirlwind, but our trips usually are.

The conference was all day Saturday (hosted by the Li Fraumeni Syndrome Association, which is only a few years old) at the Dana-Farber Cancer Institute. There were a variety of sessions, including center updates from doctors from around the world, including the UK, Brazil, Japan and Canada, in addition to the United States. It showed me that doctors everywhere are exploring LFS and trying to learn as much as possible about it, AND are making great strides.

Some of the findings were fairly similar (discussions about the p53 mutation, common cancers associated with LFS, etc.), and some were different, such as a study being done with elephants and how they have like 20 copies of the p53 gene. Because of this (and because the p53 gene is a tumor suppressor gene), elephants never get cancer. Because even if one of the genes becomes damaged or stops working, there are plenty of other copies.

What I found interesting, and this is something I didn’t know, is that Leukemia (including the kind I had, which was ALL) is actually very UNCOMMON in LFS, accounting for only 3 to 5 percent of the cases in those with LFS. As I kind of knew, breast cancer was one of the most common, followed by, in no order, adrenal cancers, soft tissue sarcomas, thyroid cancer and brain cancer. Melanoma, stomach cancer, blood cancers (Leukemia), colon cancer, and many others also make up the cancers commonly seen in those with LFS.

And like I had hoped, I met a lot of other families with LFS. During one portion of the conference two separate people told their personal experiences with LFS. One, a man in his 40s, had cancer as a child. Only a few years after his first cancer, his brother got cancer, and then his father. Years later he got, and survived, his second cancer, but lost both his brother and father to cancer. The other speaker, a woman, is found to have mosaic LFS (in some of her cells but not all of her cells, like was found in my blood), and two of her four children have LFS. One of them had cancer twice before the age of 11, the other one has had cancer once.

I also met a woman who was with her daughter, who had LFS, and had faced a few cancers. The woman had lost two children to cancer and some of her other children also had had cancer. Her daughter, who was 26, was worried about getting breast cancer and wondered about screenings and mastectomies, which I ended up talking to her about.

Just a note before I continue, so you better understand my LFS since it’s been a while since I talked about it in great detail:

It is confirmed I have LFS in two places: in my tissue (both healthy tissue and tumor tissue – taken from my breast cancer tumor), and in my blood. Though in my blood it is found in some of the cells but not all of the cells, which is what is called a mosaicism. My case and personal cancer histories seemed to be very different than some of the people with LFS at the conference. Similar: we all had multiple cancers present early (childhood and young adulthood). But different: different types of cancer.

There was also a lot of talk about the LFS gene being passed along from parent to child. Essentially the chance is 50-50. I knew this already, but there was a lot of confusion at the conference from parents who tested negative for the gene, but had kids with LFS. (Or my mom who tested negative, but cancer and/or LFS, we THINK, clearly comes from her side because her brother died of childhood Leukemia and her father died of liposarcoma. Both of those cancers are considered LFS cancers.)

There was a woman who tested negative but pretty much everyone in her family, including multiple children, had had, are dealing with, or died of cancer. And she couldn’t understand where the mutation came from.

We could speculate all day about those cases, or my case, but the truth is we don’t know yet. My mutation could have happened at conception or it could be from my mom’s side of the family. Our next step is to reach out to Dana-Farber (we spoke with a geneticist at the conference) and perhaps test my mother’s father’s tissue to see if he carries the mutation.

Of that information, of the doctors’ updates, nothing really surprised me. That doesn’t mean I didn’t learn a lot, because I did, but I didn’t learn anything new that surprised me.

My questions remain: what screenings should I be getting? From the conference it became pretty clear that while doctors today do not know for sure if early and often screenings are beneficial to patients with LFS, it seems to be the standard protocol for detection. And it became clear to ME that I want to start getting annual full-body MRIs, which is the one main screening I’m not doing yet. Once the NIH study moves forward (which I have been told I qualify for), I can start getting my screenings at the NIH in Bethesda, and they will be covered financially. Otherwise I will need to request them through my doctors, and we will have to pay out of pocket.

The conference also re-confirmed it is advised that patients with LFS avoid radiation whenever possible, and opt out of radiation treatment for cancer unless absolutely necessary. So I continue to avoid the scans at the airport, refuse dental X-rays more than every 3-4 years, and try not to get scans. (More on this later – perhaps another post – about what it’s like to continuously explain yourself to airport staff and dental technicians.) Ultrasounds are preferred.

Anyway, I could go on forever. There was lots of information. Nothing too surprising. But I did learn a lot. And I met other families. And yes, it was emotional, especially hearing some of the patients speak. The man who spoke sounded a lot like myself. Yes, he did have, and has, a different journey with different obstacles, different pain, etc., his whole message was inspirational. He talked about the pain of his personal cancers, watching his little brother get his leg cut off from cancer, and cycling across the country with his dad because it was his last and dying wish. His life has been painful. LFS has been painful for his whole family. But he decided not to let fear control his life, and find beauty and meaning in the everyday. He decided to live each day fully. When he talked about riding a bike across the country with his dad, he said at first he was hesitant, thought his dad was crazy and didn’t fully understand it, but he soon realized he didn’t have to understand it. His dad wanted this. So they did it.

It made me think of myself and Tour de Pink. It was just something I had to do.

The conference was informative. I’m glad I went, glad I was able to connect with other LFS families. Glad I was able to connect with the LFSA which I foresee being a larger part of my life now. Glad I was able to connect with multiple doctors and geneticists and tell them about my story and ask them questions. Glad Sean and my mom joined me in taking in all of the information.

I left inspired: work is being done, at all times, all around the world, to help figure out this complex thing called LFS.

Because of research, LFS cancers may be treated differently in the future, resulting in better outcomes.

Because of research we might one day have actual real screening guidelines so I won’t have to guess when I should be getting a colonoscopy or how often to have dental X-rays, or any X-rays.

I left not feeling scared. I have no additional fears or worries about getting cancer again. It’s the same level it’s always been. I don’t really have time to worry. I’m pretty busy.

And while I’m sometimes kinda worrying, work is being done, all over the world. The p53 mutation is so complex. Its cancers are so complex, the patients so complex. But we know it exists and doctors are doing something about it.

In the meantime I can feel pretty confident about my own screening plan and the way I live my life. It won’t change because of the conference. I can only do my best and hope for better in the future.

And Boston was amazing! I wish we had more time there! We squeezed a lot of fun and sightseeing into Saturday night and Sunday morning and afternoon, including dinner at the original Cheers (called the Bull and Finch pub) on Beacon Hill, watching the Penn State game at The Greatest Bar with the Penn State Alumni Association in Boston, Duck Tour on land and water, and an awesome lunch of lattes and pizza at Pappa Razzi on Newbury Street, surrounded by cute little boutiques and cupcake shops.

I hope to be more involved with the LFSA in the future, and hope to further connect with other patients around the country, and maybe the world. Because although yes, their stories are scary and heart-wrenching, being a part of each other’s world offers more hope than not.

As the LFSA said at the conference: You are not alone. We are one.

A lot of questions remain and a lot of work still has to be done. But I’m doing my best with what I have now. And that’s good enough for me.

What an amazing time in the world to see his research develop before my very eyes? Thank you to the doctors. Without you, none of this would have a name.

You can learn more about the LFSA here: www.lfsassociation.org.

Following is the conference agenda taken from the LFSA website:

8:00am – 8:30am
Registration / Continental Breakfast

8:30am – 8:40am
Welcoming Remarks
Judy Garber and Kathy Schneider
David Malkin for the Consortium

8:40am – 10:00am
Research UpdatesUri Tabori, Toronto – Brain Tumors
Simone Hettmer, Boston – Anaplastic Rhabdomyosarcoma
Thierry Frebourg, Rouen – Functional Assays
Melissa Alderfer, Philadelphia – Testing Children for LFS

10:00am – 10:20am
LFSA UpdateJenn Perry and Rob Lufkin, Li-Fraumeni Syndrome Association

10:20am – 10:45am
COFFEE BREAK

10:45am – 12:30pm
Center UpdatesMaria Isabel Achatz, Sao Paulo, Brazil
Louise Strong, Houston, TX, USA
Jeffrey Weitzel, Duarte, CA, USA
Wen-Yi Wang, Houston, TX, USA
Phuong Mai, Bethesda, MD, USA
Emma Killick, Sutton, UK
David Malkin, Toronto, Canada
Josh Schiffman, Salt Lake City, UT, USA
Judy Garber, Boston, MA, USA
Yukiko Tsunematsu, Tokyo, Japan

12:30pm – 1:15pm
LUNCH

1:15pm – 2:00pm
Living with LFS: Fireside Chathosted by Judy Garber and David Malkin

2:00pm
ICE CREAM SOCIAL

2:30pm – 4:15pm
LFSA WorkshopJenn Perry and Susan Faulkner – LFSA and You!
Bonita Kline and Georgia Engrebretson – LFS Community

4:15 – 4:30pm
Closing RemarksJudy Garber

Above:  some pics from Boston, including our hotel view, Duck Tour bus/boat, and dinner at Cheers!

To do list: make a pie

Me on the runway Oct. 17 at the PA Pink Zone's second annual Little Black Gress Goes Pink fashion show and wine tasting! This was outfit #1. Clothes by n'V Boutique, hair and makeup by Portfolio Salon. Photo by my talented husband, Sean Miller!



Li Fraumeni Syndrome is scary. Sometimes I have dreams about getting cancer again, and in those dreams, it isn’t me suffering for myself, it’s me suffering for Sean. It’s me feeling sad for Sean, not sad for myself.

This was the topic this morning during my appointment with Dr. Kelly. We address the LFS so much, but it’s never “I’m scared of X” or “I’m scared of Y.” It’s mostly I’m worried about Sean. It’s mostly I’m doing what I need to do to stay on top of my health, and I’m not letting the LFS control me. I’m aware of it and in control of it but I’m also living with it, and doing a damn fine job.

With all of my “living,” it’s pretty obvious I’m not letting having LFS or fear of cancer get in the way of anything. Anything. Double century bike ride. Modeling in fashion shows. We’re going to Ireland next fall. Oh, and we’re thinking about starting a family. LFS doesn’t get to, nor did it ever, control my life. I live NOW, because NOW I can and because NOW I’m healthy. That’s why I’m always running and signing up for a 5K, 10K, mud run. These are my plans, these are my goals, and LFS doesn’t get a say.

All that LFS does is force me to millions upon millions of doctor’s appointments and blood work and screenings. We watch. We wait. We listen. But we don’t pause. We don’t pause life. I keep making plans. I keep running. I keep moving. I no longer wait. I do things now and I do them when I want to.

LFS doesn’t have a say.

Despite that, it’s scary. It’s always in the back of my mind; probably more so now with the conference coming up this weekend in Boston. It will be my first time meeting other people with LFS and talking to doctors who actually specialize in LFS. It will be my first time entering the world of LFS. And I am so blessed to have my mom and Sean go with me for it. There will be a lot of information, probably most of it overwhelming. But I’m ready. I want the knowledge so I can have some of the power. I’ll never get all the answers, but at least I know what my questions are.

LFS doesn’t have a say.

Since Tour de Pink (which I’m STILL on a high from!), a lot of my friends have been asking me what’s next. So apparently there’s a theme. I find a challenge that means a lot to me, I prepare for it (training, etc.) and then I conquer it.

A lot of my life has been like that since April 2011. It started with 5Ks because I realized I loved running and what it did for my body and mind. It was 5K after 5K after 5K. Each time faster. Then it was a mud run: a new challenge. Getting dirty and climbing on walls. And then it was a 10K. And then it was Tour de Pink. But it’s also not just physical challenges. My storytelling night via The Moth in June 2012 was the starting point of many more public speaking appearances. And last week I modeled again as a breast cancer survivor in the Pink Zone’s fashion show and wine tasting fundraiser. I wrote my second “pink ribbon” column in The Gazette. And I plan to keep writing and keep sharing my story. And I’m going to keep challenging myself physically in the process.

Right after my diagnosis I recorded something into Sean’s iPhone. I had just started running thanks to him and if you have read most of Pink and Pearls you’ll know my first 5K was the morning I found the lump. My second 5K was the day after the fine needle aspiration. And you also know how, because of that, I can’t think of running without thinking about breast cancer. Running is my healing. I ran between surgeries (except with the expanders because ouch!), and I ran, and run, after breast cancer. Every time I go for a run, whether it’s 2 miles or 6 miles, I think of my body, how much I owe it, how much I love it, and how much I want to make it stronger and better.

But right after my diagnosis Sean and I were driving home from being out with friends and we talked about running and about how once the breast cancer was over I would run again. We decided to make it a promise. So I said, which he recorded and still has to this day: “(When all of this is over) I’m going to do all the races.”

Just like that. I said “all the races.”

OK. Counting the upcoming 5K I’m doing later this month, I will have done like 9 5Ks in the past two years. And one 10k. And one mud run. And one double century bike ride.

I get that it’s literally impossible to do “all the races” because that would mean I would be traveling the globe doing races every second of every day for the next 2,000 years.

“All the races” means all of MY races. The races I decide to sign up for, challenge myself with. “All the races” means nothing is off the table. It means once I’ve done 9 5Ks it’s time for the next step, which is why I did a 10K. It means that just because I wasn’t a cyclist, Tour de Pink wasn’t off the table. So I did that. And now Sean and I are thinking about signing up for a 10-miler on March 30, just one day before our second wedding anniversary! What a way to celebrate! The man I love, who introduced me to running, will run with me to celebrate two years of marriage. Together we’ll conquer 10 miles in our sneakers.

I did say I would rest a little after Tour de Pink. And trust me, I am. Going from cycling 5 days a week to not really does feel pretty relaxing. And I also waited one week post Tour de Pink to get back to running, and now I’m only running about 3 days a week. But once my training sets in for March, it will pick up. Don’t get me wrong: I love running and I do run just for fun. I run for myself and I run for myself. And if I never sign up for another race for the rest of my life I would be content. That being said, a little boost doesn’t hurt. Knowing I have a 10-miler in March pushes me a little more. I like having something to work towards.

And like I said, because of the LFS I do things now. Because I can and because I’m healthy.

And like I said, “I’m going to do all the races.”

But running and everything that goes with it is only part of the equation. My life is go-go-go. I’m always making plans. We’re always traveling. I’m always finding another challenge. I’m always embarking on new adventures. And when I’m asked to share my story at a public event, I always, always, always say yes.

Like my best friend Adam pointed out recently, a lot has happened in my life in the past two years. In no particular order, I got married, got new boobs, got a dog, built a house and rode 213 miles.

So what IS next? I think I’ll settle down and take it easy with a 10 mile run and a trip to Ireland. Oh, and I still have to bake that pie.

It’s not that these challenges and projects are addicting. It’s not that I’m never satisfied. Trust me, I am. I still revel in my Tour de Pink accomplishment and probably will for a long, long time, if not forever. (Remember I am supposed to tell my future children the time I rode 200 miles? Yes, I think I’ll always revel in it.)

I am completely satisfied, every single day, with my wonderful, beautiful life. I am completely and utterly blessed with everything I have and the most phenomenal husband in the world. My life has never, ever felt more full. My life feels like a happy, round tummy full of pie. (Really need to make that pie, huh?)

So that’s not why I do these challenges. I don’t need to prove anything to myself. I know I’m strong, capable and determined. I don’t need to prove anything to anyone else. Those who truly love me accept me as I am. I’m doing this because I WANT to. It gives me great joy to find new adventures and to experience new feelings and milestones.

So it’s not that I’m stirring until the next thing. It’s not that I NEED the next thing. Because, clearly, I don’t. I’ve done a lot of “things.”

I want the next thing.

I want the adventures.

Even if they make me a little crazy, even if they make me a little nervous (or a lot nervous), I know I thrive off of them.

When I was planning my wedding while undergoing surgeries you read that I made so many social plans just to keep my mind off things. I never had any down time, because when I did, I would worry. I was STIRRING. I NEEDED plans. I needed to be busy.

Now I don’t need to be busy. I am listening to my body more. If my body tells me I need a night on the couch watching Dr. Quinn, Medicine Woman, I lie on the couch and watch Dr. Quinn, Medicine Woman.

I plan my physical activity on my Google calendar. If I don’t feel like running one morning and my body tells me I need more sleep, I don’t go for a run.

I have no problem saying no to social plans, or on making them work into my schedule so that I’m not booked every night of the week.

Yes, I’m still busy. But I make sure it’s things I love and enjoy. It just so happens I am a social person and it’s not uncommon for me to have plans four nights a week. But when I need to rest I rest.

With a lot of my life’s major stressors behind me (breast cancer and surgeries and the wedding planning) I don’t fill the need to fill any holes. I rest when I need to and run when I want to. I’m busy and active and I love it. That’s who I am.

But today it’s more about listening to my body and giving it what it needs. It needs to not worry about every little thing. It needs to breathe more. It needs to let go of negative people and things and places, and instead be filled with positive, uplifting people and things and places.

With a satisfied life (like a belly full of pie), I am not searching, looking, filling holes. I am just BEING. And that is something I never knew how to do before, or even knew before what it meant. (This was a theme many times in Pink and Pearls).

What is it to just BE? For me, it’s a beautiful balance between want and need. It’s not one or the other. It’s both, working together. Like peanut butter and jelly. Like Will and Grace.

I’ll be getting back to yoga this winter. I’m juicing more and eating more power foods and more raw foods. Less processed foods. More fruits (if that’s even possible), vegetables, herbs and spices. Seeing how certain foods make me feel. Finding foods that fuel me, finding out which ones don’t. I’m still on the coconut oil, apple cider vinegar, dandelion root, kale, hempseed, wheatgrass, seaweed kick. (I think it’s not so much a “kick” as much as it’s become part of my life now to eat those things.) But now I’m adding in more figs, eggplant, chia seeds, hard boiled eggs, pumpkin seeds, beets. More variety. (Dr. Sharma told me my blood was “beautiful” at my appointment two weeks ago so I think I am doing something  right!)

And more mindfulness. More positive energy. Thanking my body for what it’s done for me. Not ever, ever punishing it. And not polluting it.

Since the beginning of this post we’ve moved around quite a bit, from being scared of getting cancer again to running and resting and kale and coconut oil.

So those must be my thoughts for the day.

Lots of thoughts on living. On new challenges. On new adventures. Perhaps my biggest fear isn’t LFS-related; it’s in halting improvement and change.

Call it crazy. Call it a “coping mechanism” for dealing with the fear of cancer again. Call it whatever you want.

I think in general people always want to grow and improve. People are always changing, as life is always changing.

Because LFS doesn’t get to have a say in how I live my life, or how “careful” I must be to not make plans just in case I get cancer again or my cancer comes back, it is MY call how we do things.

And I’ve found a perfect balance, it seems, between doing what I want and love, and in doing what I need to be able to do what I want and love.

I guess it’s pretty irrelevant if my fear of slowing down or not setting new goals has something to do with surviving cancer twice or the LFS. Sure it does. But it also has to do with ME, because this is who I am. And like I said, it’s irrelevant. I certainly don’t need a reason to keep on keeping on. Two years ago that was the hardest thing for me to do.

"My pink ribbon gets a new set of wheels"

Note: This column originally appeared in the Oct. 17, 2013 issue of The Centre County Gazette as part of its Breast Cancer Awareness Centre Spread. It is a continuation of “My pink ribbon” that appeared in the same spread in 2012.  

“My pink ribbon gets a new set of wheels”

If you had asked what I was thinking in February when I signed up for the Young Survival Coalition’s Tour de Pink East Coast, a three-day, 200-mile bike ride from Philadelphia to Washington, D.C., I don’t know what I would tell you. All I knew at the time was that I was a young breast cancer survivor, the Young Survival Coalition meant so much to me, and I wanted to do something amazing and challenging to support a cause I believe in.

Since my breast cancer diagnosis in April 2011, I’ve found great joy and meaning in jumping into new experiences and adventures. Tour de Pink seemed a little scary and very overwhelming, but I had decided, since my breast cancer, that I don’t sit on the sidelines. To me, life is too short to waste on “wishing” I would do something or on “waiting” for the perfect moment.

Planning and having my wedding in the midst of my breast cancer journey taught me that life events seldom happen how and when we plan them to. There are no “perfect moments” in life to do things. This was my chance to really challenge myself, and in the process, support other women just like me.

I hadn’t ridden a bike more than a few times since I was a little girl. And the bike I owned, which I had just bought a year earlier, was a seven-speed, low-seated heavy bike with thick tires. Actually, riding a bike made me nervous and I wasn’t particularly fond of the sport.

But something inside of me told me I had to do this ride. Not as a cyclist but as a survivor.

Just like I can’t imagine my life today without it being touched by breast cancer, I can’t imagine my life having never done Tour de Pink.

 Training

In the seven months that elapsed between the day I signed up and the weekend of the ride, which was Sept. 27 through 29, I put everything I had into the ride. I fundraised. Friends, family and even people I had never met before supported me, helping me to raise $5,558. Every single cent of that goes to the Young Survival Coalition, a non-profit organization oriented to support and educate about breast cancer in young women.

And I began my training right away. As a breast cancer survivor I received a Liv/Giant road bike, which I would use for the ride, as well as a helmet, Shimano clip-in cycling cleats and pedals, and much more. Each donation was a partnership between the respective companies and the YSC to ensure survivors had everything they needed to ride in Tour de Pink. 

Between the end of February and the end of September I immersed myself in cycling. I read about it, dreamt about it, signed up for rides with the State College Cycling Club, and reached out through friends to find people to ride and train with. My husband Sean, who supported my decision since the day I signed up, trained with me. We bought cycling jerseys and shorts, cycling glasses, bike tools and pouches and water bottles. That winter I did my first 30-mile rides through the hills of Centre County, and as summer approached I was riding more and more. In the month leading up to Tour de Pink I was riding five days a week: 20 miles before work some days, 30 miles after. I would wake up at 5 a.m. just to get on the bike. My weekends were dedicated to longer rides: 50 or 60 miles on Saturday, 40 on Sunday. Tired and sore, I’d ride. I’d ride with new “boo-boos” on my knees from learning how to use the clip-in cleats. Up and down hills, through traffic, along country roads. I’d push myself. More than I ever pushed myself before. I rode by myself, with Sean and with friends. I rode at night and in the morning. I challenged myself with tough, hilly routes. My life became cycling. Stretching, energy bars, coconut water. Pushing, resting, pushing, resting.

Never before had I put my heart, body and soul into anything the way I did for preparing for Tour de Pink. And all the while I was raising money, reaching out to fellow riders through social media, and panicking. Panicking. Would I be ready for this? Am I training enough? Am I training too much? How am I going to ride 200 miles in three days? I am not a cyclist.

Then Tour de Pink weekend came. And my life changed.

200 miles, 200 new friends

The Young Survival Coalition hosts Tour de Pink rides every year throughout the country, including in the West Coast and Atlanta, Ga. About 200 people participate in each ride, as individuals or on a team.

According to its website, the YSC’s Tour de Pink is the most powerful community fighting breast cancer in young women.

“YSC Tour de Pink is your chance to raise funds to ensure no woman diagnosed under 40 faces breast cancer alone. Whether you ride one mile or hundreds, from Philadelphia to Washington, D.C., to the shores of the Pacific or in between, there’s a place for you in our circle,” the website states.

The money Tour de Pink raises helps the YSC provide resources, connection and outreach so women feel “supported, empowered and hopeful,” according to the website. “With every mile you ride, you help YSC expand our circle of support to the thousands of women who need us.”

Tour de Pink riders range in ability. Some have been cycling for many years, while others are new riders. Some are women undergoing treatment for breast cancer. Some riders have a sister, mother, wife or friend battling breast cancer. Many lost a loved one to breast cancer and ride in her honor. Some have never ridden before and some have ridden every Tour de Pink since it started.

The East Coast ride, which is in its tenth year, consists of a more than 200-mile route from King of Prussia to Washington, D.C. The day 1 route, which is 65 miles, takes riders from King of Prussia to Lancaster. Day 2 begins in Lancaster, passes through York and Gettysburg, and ends in Frederick, MD. Riders can cycle the whole way, which is 90 miles, or they can choose a 60-mile route. And day 3, the final day, is about 57 miles from Frederick into Yards Park in Washington, D.C., passing the White House, Washington Monument and other sights.

The weekend is not competitive; it’s about riders doing their best and giving their all. It’s about spirit. Riders can choose to ride any amount they want, whether it’s one mile or 200. They can stop any time they want. There are rest stops, which are clearly marked on the route and on riders’ cue sheets, about every 20 miles that provide mechanical assistance, food, water and bathrooms. Volunteers cheer riders on as they get to each stop, and make peanut butter and jelly sandwiches. (Some stops even had Panera Bread sandwiches!) There’s lots of picture-taking and hugging at each stop. Riders can refill their water bottles or take an energy gel. There are also other treats, such as Oreos and M&Ms. (I would always snag a bag of M&Ms for later in the hotel room).

Support And Gear, or SAG, vehicles follow along should a rider need help between stops, whether it’s a flat tire, they don’t feel well or are ready to stop for the day. There are professional cyclists who ride with the riders, as well as marshals on mopeds who help control traffic and keep riders safe. The whole ride is supported.

Pink Tour de Pink arrows guide the route. Friends and family can follow along in cars and meet riders at rest stops and cheering stations. Riders are provided with, through the YSC, hotel stays and meals throughout the entire three days, including breakfasts and dinners. Additionally, all of the snacks and bike support is provided at no cost to the riders.

Each night at the hotel there is a hearty dinner buffet, survivor speakers (I was honored to speak Friday night) and speeches and other talks from YSC staff and caregivers. Riders also have the opportunity to get a massage and see a chiropractor. The evenings are all about camaraderie. Each night we’d talk about that day’s ride, what the hardest or best parts were, and how we felt about taking on the challenge again the next day. Our bodies were tired but we didn’t want to rest. The adrenaline and endorphins were too high.

Throughout the three days we rode through eerie Gettysburg National Park and passed by horses and buggies on the sunny and rolling hills in Amish Country, Lancaster. We received cheers from standers-by in the little towns and cities we passed through. (There was even a horse with a dyed pink mane on day 1!) We rode under covered bridges, and up hills so steep cyclists in front of you looked vertical. We rode across parks, on country roads in the middle of nowhere, and through busy intersections, traffic and stoplights. We dodged potholes and tree branches.

The morale throughout the weekend was immeasurable: lots of cheering, high-fives and hugs. That weekend I made 200 new friends. My fellow riders became my rocks every step of the way, helping me up hills, guiding me through traffic and encouraging me to do my best and stay strong and motivated. People I just met are now people I can’t imagine my life without.

Empowered

I rode the entire route, coming to a total of about 213 miles. I pushed myself to ride the full 90 miles the second day, which I had doubted my ability to do, including that very morning. As I finished, happy and relieved tears streaming down my face, I was greeted by a group of about 20 people outside the hotel cheering for me. It felt unreal, like a scene from a movie. Despite my body being physically tired, I never felt so alive that afternoon. I felt empowered.

Tour de Pink, in its entirety, was one of the hardest things I’ve ever done in my life.

But I knew, going in, that it would be. So in addition to my physical training, I mentally prepared myself for moments when I felt like quitting.

Prior to the ride friends and family sent me messages of support, flowers and gift baskets. One friend in particular told me to “save nothing” during Tour de Pink, meaning to give it my all; hold nothing back. I remembered that message loud and clear throughout the whole weekend, and especially on day 2 as I rode the farthest I had ever ridden in my life.

Physically I had to push myself through miles and miles and hours and hours of riding on challenging and often stressful terrain. I pushed my body to its ultimate limits. I really did save nothing; I used every last ounce of my reserve.

Mentally I had to wake up each morning and tell myself to do it again. And again.

And emotionally I reminded myself why I am riding: for myself, and for other women and their families; so young women don’t have to face breast cancer alone. When I was diagnosed at the age of 26 I had limited resources, but when I found the YSC I knew I had somewhere to turn. Through other survivor stories, message boards, news articles and events I found my place in a scary world of uncertainty. That’s why I was riding. Because I didn’t want other young women to feel alone in the face of a disease that is often misunderstood or overlooked in people like us.

I met other young women survivors who were under 30, like myself, when diagnosed, and even a woman who, like myself, was planning her wedding when she got breast cancer. I met other supportive husbands and boyfriends, like Sean, who were there to ride with or support their wives and girlfriends.

I rode with women who are currently undergoing chemotherapy. I rode with women who have cancer.

Tour de Pink allowed me to connect, physically and emotionally, and on a deeper level, to other people who share my fears and anxieties. Until the ride, I could count on less than one hand the young women I met, in person, who had dealt with or who were battling breast cancer. But I knew they existed and I knew meeting them would provide me with a sense of community: that, no matter how different our stories or journeys, together we can get through the battle, during and after breast cancer.

When I crossed the finish line in Yards Park in Washington D.C. on Sunday, Sept. 29, I was joined by family and friends holding signs and handing me chocolate cupcakes, flowers and champagne. I had waited for that day since February: the day I had trained for, prepared for, rode for. I had envisioned coasting under the balloon tunnel, unclipping my cleats, getting off my bike and crying happy tears, surrounded by Sean and my family, friends and fellow riders. And it happened. Exactly like that. I had done it. I knew my life would change after I completed Tour de Pink, but it actually changed the moment I started.

If you had asked me one year ago, or even seven months ago, if I could imagine myself riding more than 200 miles in three days on a bike I would have told you, simply, “no.”

I would have told you my legs would feel like jelly.

I don’t own a “real bike” and I’m not a cyclist. Those would be my answers.

But I proved to myself none of that mattered. The YSC and Tour de Pink made sure none of that mattered.

It didn’t matter that seven months ago I could barely ride at all. It didn’t matter that one year ago, to the month, I had my last breast cancer surgery and couldn’t lift a gallon of milk, or even my arms above my head.

But most of all it didn’t matter that I wasn’t a cyclist. Somewhere along the way I become one.

Why I rode

Another year has gone by, and another Breast Cancer Awareness Month is here, forcing me to think about my battle and how it’s changed my life.  And I am blessed and happy to report I continue to remain healthy and am approaching my two-and-a-half-year survivor mark. Since “My pink ribbon” in last year’s Breast Cancer Awareness Centre Spread in The Gazette, I have had the opportunity to share my story many more times for many different audiences and events, and through many different outlets. And I plan to continue to write to spread awareness.

But now I’m adding something else to my list of accomplishments: I rode a double century to support young women with breast cancer. In the process I raised funds for the YSC, met other people, made lifelong friends, became a cyclist, became a better athlete, tested myself, challenged myself and conquered one of the biggest physical challenges of my life.

So ask me again what I was thinking in February when I signed up for Tour de Pink. I still couldn’t give you an answer, because there isn’t just one. I saw an opportunity to do something considerable for a cause rooted so deeply in my heart. Not knowing what path lie ahead, I saw a chance and I decided to take it. I saw a dream and decided to give it wheels.

About the YSC

According to the YSC, more than 11,000 women under 40 will be diagnosed with breast cancer in the U.S. Currently there are more than 250,000 women living in the U.S. who were diagnosed with breast cancer under age 40.

Issues young women with breast cancer face, among many others, include body image; relationships and dating; fertility; early onset menopause; and financial challenges, according to the YSC.

The Young Survival Coalition is the premier global organization dedicated to the critical issues unique to young women who are diagnosed with breast cancer. The YSC offers resources, connections and outreach. The YSC’s founders were all diagnosed with breast cancer before the age of 35, and saw the need for better information, support and research for young women facing the disease, according to its website.

The YSC, founded in 1998, works with its members to advocate for more studies about young women and breast cancer; educate young women about the importance of breast self-awareness and knowledge; and serve as a community of support for young women with breast cancer. Headquartered in New York City, it has almost 30 affiliates throughout the United States.

For more information about the Young Survival Coalition visit www.youngsurvival.org. For more information about Tour de Pink visit www.ysctourdepink.org.

Tour de Pink: day 3 (my hugs and chocolate cake)

Photo by Kristen Buckler, events manager of the Young Survival Coalition. Me with my Aunt Ann and cousins Ethan and Elizabeth who made me this very awesome "social media" sign! Love you guys! When I woke up on day 3 I told myself TODAY IS THE DAY. Today is the day I’ve been waiting for. The day I’ll cross the finish line and complete Tour de Pink. Day 3 was rough. There were two SAG stops, and I kept telling myself to only think about getting to the first one, then to the second one. Between the first and second stops my thighs really started to feel like bricks. Each stop was about 20 miles apart, and let me tell you, they were a long and hilly 20 miles. Because of a lot of hills and lights I was riding by myself a few miles out of SAG stop 2 and I really, more than ever, need another rider with me. Thank goodness Barb and Deanne met up with me just a few miles away. As we approached stop 2 I began to feel increasingly nauseous. I also couldn’t feel my legs. They were moving, but felt numb. I felt like a robot; just moving but not really realizing it. I started to cry, was having trouble catching my breath, and kept asking Deanne how much further until the SAG stop. She assured me it was just around the corner, and kept me focused by asking me questions. One of the questions she asked me was how long I had been training for Tour de Pink. I told her seven months, and that I had put everything I had into this ride. We finally got to the last stop of the day. I jumped off my bike and started crying. Sean was there and was asking me if I was OK. I felt like I was going to toss my cookies. One of the support guys brought me over to sit on a chair and told me, as I’m sobbing (my other “moment”) that if I’m sick, I can take a SAG vehicle to just outside the finish line and ride from there. He told me not to be too “proud” and that my health matters more than anything. People swarmed over me: handing me ice, taking off my helmet and glasses, handing me food and water. I was overwhelmed and so humbled by all the support. Barb and Deanne told me to take my time, and they wouldn’t leave without me. I never doubted I was going to finish. We were only 12 miles away from the finish line, though I knew those next 12 miles might be the hardest because we’d have to navigate through D.C. without arrows on the street signs, and with many stop lights, stop signs, traffic and pedestrians. And traffic circles. Omigoodness, the traffic circles. I think there were three that day. I took a small break, went to the bathroom, told everyone I was OK and I was doing this, and hopped back on the bike with Barb, Deanne and Jennifer, who played a song for me on her iPhone. I tried not to think about the D.C. riding; it made me nervous. I stayed focused and told myself “today is that day” I’ve been working towards and waiting for and riding to. TODAY IS THE DAY I WILL FINISH. TODAY IS THE DAY. TODAY IS THE DAY. WINE. CHOCOLATE CAKE. TODAY IS THE DAY. Those last few miles were ROUGH. Some of the veteran riders had told me that morning what to look out for while riding in D.C. and thank goodness they did, because it was REALLY helpful. Some of the tips included to look out for people opening car doors in the street, and also to downshift before stop lights since many of the lights were on hills. When you stop going uphill and have to clip out, it can be hard to clip back in and climb up before the light changes. So THANK YOU, LAUREN for those tips! I downshifted at every light and made it across the hilly intersections. D.C. riding was SLOW. We were stopping all the time for stop signs and red and yellow lights. Stopping for people crossing, slowing, stopping, rolling. (That’s the order when you’re riding with a group and approach a yellow light. First you tell out that you’re slowing. And then if you’re stopping you yell that out. And once you start moving again, or when you approach a red light that turns green before you stop, you yell out “rolling” so everyone knows you’re going. This also applies at stop signs or ANY time you slow. You have to alert the riders of your every move to avoid a crash into the person in front of you.) Deanne and I lost Barb and Jennifer somewhere in D.C. so it was just the two of us riding together past the White House and other landmarks. I really had to pee and was hot and tired. I kept hoping and praying we’d be there soon but with all the stopping (and missing a turn once), it was very slow. Finally we met up with another group of riders and some marshals who kept us in a tight group all the way to the end. Finally I saw two pink arrows pointing towards the finish line. As we turned the corner, guess who we saw?! Barb! She could have crossed the finish line 20 minutes earlier, but SHE WAITED FOR US! She told Deanne and myself she couldn’t cross without us! I started to cry a little bit and at that moment KNEW yet another special part of Tour de Pink. Barb became my family over the weekend and she waited for us to cross together. We turned another corner, people were cheering on the side of the street, and I saw my family and friends, front and center, with signs. I crossed over through the pink balloon tunnel, unclipped, cried and hugged Sean. I HAD MADE IT. All of a sudden it didn’t matter that I had to pee or that my mouth was dry or that not too long before I was queasy and couldn’t feel my legs. It was a whirlwind after that. I hugged all of my finish line cheerleaders (Sean, mom, brother Drew, Anna, Grandma Martha, Jordanna, Rachel, Lauri, Dan, Deanna, Mike, Sarah, Aunt Ann, Uncle Mike, Ethan, Elizabeth and Gigi – Gigi came all the way from State College to see me cross!) Gigi handed me flowers donated by Trader Joe’s and chocolate cupcakes (my chocolate cake!), and I found a chocolate lab dog wearing pink wings just like mine, and got my picture taken with him while the owner poured me a cup of champagne. My cousins Ethan and Elizabeth, and my brother Drew and his girlfriend Anna made me signs. I hugged all of my fellow riders. There were lots more pictures and hugs and tears. It would take me forever to type out every single rider or person on the ride who touched me with their stories and encouragement, strength and inspiration. There were so many I couldn’t BEGIN name them all. Ishiuan and her husband Adam, Jamie and Kevin Nickerson, Denice, Barb, Deanne, Jennifer, Erica, Kristen, Evan, Lauren. I became friends and family with 200 riders. They became my support. I am honored to have ridden with them and for them. I expected to laugh. I did. I expected to cry. I did. I expected to become a different person. I did. I expected my life to change. It did. I can’t picture my life never having had done Tour de Pink. Tour de Pink, those three days, those 200+ miles, those riders, are A PART OF MY LIFE NOW. I can’t imagine life without Pink Flash and my clip-in shoes and pedals. (There was once a time I rode without my feet connected to the bike?!) I can’t imagine my life having never done this ride. Having never challenged myself in this way. I can’t believe I rode, with the clips, through D.C. traffic. I can’t believe one of those days I almost rode a century. I can’t believe just seven months ago I hadn’t ridden at all. Cycling. It still makes me nervous. It still makes me scared. It’s still hard. But I can’t imagine my life without it now. It has become a part of me, just like my survivorship. There is Marjie before Tour de Pink and Marjie after Tour de Pink. I got my chocolate cake and I got my hugs. And I got more. I entered a new world. A world of cycling. A world of Tour de Pink, which REALLY IS a rolling community. Like its mission, it really is about riding, supporting and inspiring. I didn’t just prove myself by doing this ride. I grew, as a person, as an athlete. I became something more than myself, something bigger than my training and fundraising. I decided I wanted to do something and so I did it. “She believed she could so she did.” I always said it would be the hardest thing I would ever do. And it was. It still is. It’s THE HARDEST THING I’VE EVER DONE. But I also said it would be the best. Thank you to my family and friends for supporting me through my training and fundraising. Thank you for believing I could do it. Thank you to the Young Survival Coalition for providing me with the tools to be successful. Liv/Giant for the bike. Shimano for the shoes and pedals. And my fellow riders and their support systems: THANK YOU. It was you who pushed me to push myself. I rode with you and for you, and I rode for myself BECAUASE of you. Thank you to the YSC staff and volunteers. The professional cyclists in bright pink vests who rode with me. The Liv/Giant staff who helped with our bikes along the way. Every single person who made peanut butter and jelly sandwiches. The people who gave us massages. The chiropractors. The hotels that hosted us. Everyone throughout the journey supported us in so many ways. They made sure we were safe, healthy and happy. And Sean: the best husband in the world. Who drove his car, mile by mile, throughout the entire weekend, to cheer me on as I rode past, supported me at the SAG stops, who prepared my bike each morning, who carried my luggage. Who knew I could do anything I wanted to do. Who believed I could. He believed he could not just because he’s my husband and he loves me, but because in his heart he knew I wanted to, so I would. I believed I could. So I did. And my life will never be the same because of it. It will never be the same.  I still can’t tell you what I was thinking in February when I signed up. But somehow, some way, a big part of me knew why. I knew why before I knew why. After breast cancer I don’t sit and wait for the perfect moment to do things. There are no perfect moments. I could have waited to do Tour de Pink until I was a better, more experienced cyclist. Or I raised more money. Or I was more prepared. The best time to do something is now. Ishiuan got permission from her doctors to stop her chemotherapy for a month to do Tour de Pink another year. She told me she would keep riding in Tour de Pink as long as she could ride. She didn’t wait until her treatments ended to do Tour de Pink. She did it now. I saw her ahead of me crawling up some of the steepest hills. I thought to myself, “I can’t possibly to do this hill,” and then I’d see her. I’d see her riding up the hill. She’s doing the hill. I’M DOING THIS HILL. I didn’t wait to have my wedding until I got my other breast. I didn’t wait to go to Paris and Italy on our honeymoon until my surgeries were over. There are no perfect times to do things. You have to do them now. Jennifer, a fellow survivor, told me on day 2, as we had just climbed a huge hill during the last stretch of the 90 miles, told me she was riding 100 miles that day, even though the route was only 90, because “I don’t dip my toes in 90 miles.” So don’t wait. Do it now. And when you do it, don’t just dip your toe in; go ALL in. Jump in and make a splash. Whether you ride 1 mile or 700 miles, the best you can do, the biggest splash you can make, is YOUR splash, nobody else’s. Sometimes you have to let whatever’s guiding you, whether you can explain it or not, to just guide you. No questions, no explanations. The last day as we departed from Frederick, MD, Sue game me those pink fairy wings you see in my pictures. People kept telling me throughout the day, especially when I needed it most, that my wings were helping me go faster. It was quite a sight coasting along the road with other riders, survivors, wearing wings. We must have looked amazing. And at one point I saw my shadow on the side of the road. I saw myself, on my bike, with those wings on my back. I couldn’t believe it was me. I was like, “What am I doing?” I felt, all at once, like a breast cancer survivor, like a warrior, like a cyclist, like a new version of myself. The wings reminded me I’m a survivor. But they also reminded me that I’m flying. I’m FLYING. Here I am, literally connected to my bike, with pink wings on my back, and I just rode 90 miles the day before and 65 the day before that. And here I am, doing everything in my power and using every last ounce of energy, to make it to those pink balloons at the finish line. When did I become this person?! Here I am, actually living one of the quotes that helped inspire me before Tour de Pink: “Until you spread your wings you’ll have no idea how far you can fly.” I have no idea how long I’ll be on Cloud 9. I feel through the roof. So much energy, so much excitement, so much relief. People keep asking me if I’m doing Tour de Pink next year. People keep telling me it’s only a matter of time until the “next thing,” my next big challenge, my next big endeavor. For now I’m letting myself soak in this bliss, this beauty. This accomplishment. And my life will never be the same because of it. It will never be the same.