Who I ride for…Please Support the 2016 Boston Brain Tumor Ride

Over 300 stories. 300 unique experiences. Patients, survivors, family, friends…everyone in some way had a connection to the devastation caused by brain tumors. To sit in a room with these 300 people was humbling because they represented a web of countless others whose lives have been impacted by a brain tumor.

Last week, I was in D.C. with these 300 individuals from across the United States for the National Brain Tumor Society’s Head to the Hill advocacy event. Together, we pushed Congress to support the brain tumor community. Over 700,000 Americans are living with a brain tumor. That number though does not fully capture the scale of this problem. If you are familiar with my story, you know that so many others, including my family and friends, have been impacted in some way by my cancer. This disease changes lives, both for patients and caregivers. If we are to truly give justice to the impacts left by brain tumors then we need to consider all the lives that are changed. The children who loose a parent too soon. The parents who have to do the unthinkable, and say goodbye to their children for the last time. The husbands and wives, whose partners depart far too early.

Since my recurrence I have had the fortune to meet some of the most incredible people, patients and caregivers, who are dealing with a brain tumor. One of these groups that I am incredibly proud and lucky to be a part of is the Massachusetts advocacy team for Head to the Hill. Advocating for the brain tumor community at the Capital is rewarding, but what I love most about going to D.C. every year for this event is meeting all of the other advocates. They are the epitome of perseverance, courage, hope, and love.

This year it was great to see old friends, and meet some amazing new people. It was surreal to think that it had only been a year since I was at the Capitol pushing through my first round of chemotherapy. A year ago, I could only focus on the present because the future was so uncertain, but last week I had the privilege to talk about and look towards my future. I am incredibly lucky my journey has turned out this way. Some people from our team last year were not able to make it to D.C. because their tumors had progressed. They are the reason I went to D.C. again for my second year, and why I continue to ride in the Boston Brain Tumor Ride.

They and their caregivers are my heroes. Despite overwhelming diagnoses, they have embraced life, supported others, and brought light and love to everyone around them. I have only met these families a handful of times in person, but they have taught me a lifetime of lessons. 

In just 5 days at the 2016 Boston Brain Tumor Ride, I will ride for them. I will ride for the mothers I have met who fight for their children even after they have passed. I will ride for the young adults I have met at Dana Farber who gracefully balance uncertainty and living. I will ride for the fathers and mothers, brothers and sisters, husbands and wives, boyfriends and girlfriends, children, and countless others whose lives have been impacted by a brain tumor. I ride because I can, and sadly many others cannot.

More than a year following my recurrence I am doing well not because of anything I have done, but simply because I am lucky. Lucky to have a tumor that is slow growing. Lucky to have access to the best medical care and resources available. And lucky to have the support of my family and friends. With this privilege, I have a responsibility to stand up for and support the brain tumor community. We are on the cusp of so many great discoveries in improved treatments, and perhaps someday a cure. But we won’t get there unless we all come together to take action. For all of those who are, and for all of those who will face a brain tumor diagnosis, please donate to the Boston Brain Tumor Ride.

Click HERE to join and/or donate to our team for the 2016 Boston Brain Tumor Ride

 

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Boston Brain Tumor Ride Speech

For the last day of May and Brain Tumor Awareness Month, I wanted to share my speech I gave at the Boston Brain Tumor Ride 2 weeks ago.  Thank you again to everyone who made the ride such a memorable day.

Here is the VIDEO

And here is the text:

“Hello Everyone,

I’m honored to have the opportunity to speak with you all today on behalf of other brain tumor survivors.  First and foremost, I want to thank you all for coming out and riding today…for all of the hard work fundraising to support crucial brain tumor research that will help develop new treatments and one day, a cure.  I also want to thank the ride committee, National Brain Tumor Society, and the NBTS staff who put hours and hours of work into making this event possible.  I had the opportunity over the past 6 months to see what goes into planning for this day, and the people that put this ride together are an amazing, passionate group of individuals…putting countless hours in to make sure this ride was a success!

When I was thinking earlier about what I wanted to say in this speech, I was trying to think of what best summarized all of the hours spent planning this event, money raised for research…the number of volunteers, participants, and supporters who came out today.  For me, it all came down to one word…and that is hope.

What is hope?  It can have many meanings, but simply put, it is wanting something to happen, and thinking that it can happen.  It can be hoping to graduate from college, find your dream job, get a promotion…It can be hoping to get married, be a mom or dad, and see those kids grow up and achieve their own life milestones.  When faced with a brain tumor, hope takes on a different form.  It becomes a driving force to keep moving forward, even in the midst of so much uncertainty where it is unclear whether those hopes and dreams will ever be reached.

I was originally diagnosed with a brain tumor when I was 12 years old back in 2004 after I had a seizure in gym class.  The tumor was located near the left motor cortex that controls movement on my right side.  With the risk of it continuing to spread, my only option was to undergo an aggressive surgery.  I had the surgery performed at Massachusetts General Hospital, and when I woke up, I had lost all movement on my right side.  The doctors had expected this to last for at least three months, unsure about how much movement I would regain.  But 4 days into my hospital stay, to the surprise of everyone around me, I was able to twitch my leg.  I spent the next three months in the hospital relearning how to walk…how to even hold a glass of water.  But over the subsequent 10 years, I recovered.  I got to the point of being able to play competitive sports, excelled in school, graduated high school, college, and then received a national scholarship to live abroad.  I moved to Indonesia and started to live my dream working in ocean conservation and development.

Last year while travelling through Singapore, looking up some sights to go see, I had a seizure on my right side.  My mind immediately flashed back to my 12 year old self, 11 years ago, seizing in the gym.  I went to the hospital and spent a week there, but my doctors attributed it to scar tissue, so I went back to my travels and work.  This past November, I came home to see my family during Thanksgiving for the first time in a year and a half.  I kept having more seizures though, so I went in for an MRI.  Unfortunately, the news wasn’t good.  The doctors found tumor growth extending outwards from where my previous surgery was.  We consulted with doctors throughout Boston, but ultimately, they concluded that this time, the tumor had extended too far into the motor strip, making it inoperable.

In February I went through 6 weeks of proton radiation followed by chemotherapy, having just finished my first cycle of Temodar. The goal of this treatment is stability until a targeted treatment can be developed because as all of us here are all too well aware, there is no cure…yet.  It is the prospect of new treatments though that gives me and thousands of other patients hope for a better future, and the only way these new treatments will be developed, is funding.

About two weeks ago, I sat in a room in DC with 10 other Massachusetts brain tumor advocates during a meeting with Senator Warren’s staff to advocate for more funding.  I was incredibly moved during this meeting by the stories of everyone who was there.  Two fathers with GBM’s who keep fighting every day to beat the odds for their family and kids.  A woman and man, both of whom lost their fathers.  A woman who had a brain tumor and was there to also support her friends.  A college student currently battling a brain tumor.  And a daughter who had to take a semester off of school to help her mom when the seizures became too difficult to manage.  All of us here know how a brain tumor can be so debilitating not just for the person who is diagnosed, but caregivers as well.  It is unacceptable that one of the most deadly diseases…the leading cause of cancer death in children and teenagers, receives so little funding nationally.

That is why the fundraising we do for this event is so important.  It is not just a drop in the bucket.  It can truly make a difference.  I am one of the lucky ones who has some extra time to wait, but I am just one of thousands throughout the country and the world, hoping for better treatments, many of whom don’t have the luxury of time.  The money we have all raised here today will go directly to helping people like me, people standing here today, and all people impacted by brain tumors who wake up uncertain about the future.

Because that is one of the hardest parts of living with a brain tumor…that uncertainty.   But over the past few months, what has helped me come to terms with facing my own mortality was realizing how normal that uncertainty actually is.  In fact every day, all of us face the uncertainty about what comes next.  As the late neurosurgeon, Paul Kalanithi put it, “Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when.  After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely.”  It is this recognition of the fragility of life that has made me more understanding of the importance of the present.  And it is in the present where I draw my hope and strength.

Yes, future treatments and a cure give me hope, and they are desperately needed, but in the day to day, what helps keep me moving forward are my family…my friends…my community, all of whom face different yet equally difficult struggles, but continue to stay by my side.

Every year, what gives me hope is this day…this ride.  My family, friends, and I have been participating in this event since my original diagnosis 11 years ago.  What makes this day so special every year is that we are all coming together as a community to take some control over what can feel like an uncontrollable disease.  Brain tumors do not define us, rather, what defines us is how we continue to move forward, and we are doing that by supporting each other as a larger community.  By raising funds to help find new treatments and cures.  By remembering and honoring those we have lost.  And by supporting and celebrating patients, caregivers, and survivors.

It is knowing that there is this community of support that gives me hope, and helps me keep taking a step forward every day.  So I want to thank the National Brain Tumor Society for putting on this event, and most importantly, I want to thank you all today for serving as a source of hope for all of those who have been and may be impacted by a brain tumor.”

What Life’s All About

The Boston Brain Tumor Ride last Sunday could not have been a better day.  It wasn’t just the beautiful weather, scenic bike routes, festive environment, or the fact that I received two Red Sox tickets afterwards.  No…what made Sunday a day I will never forget is all of my family, friends, and community who came together to support me, to support each other, and to support the larger brain tumor community.

In a speech I gave after the ride, I mentioned that coming to terms with my own mortality has made me more understanding of the importance of the present, and that it is in the present where I draw my hope and strength.  Those words could not have been more true than on Sunday.

Quite literally actually, Sunday was the best I felt health and energy-wise since starting the chemo cycles two and a half weeks ago.  After finishing my first chemo cycle, I felt pretty fatigued to the point where I was unsure whether or not I would attempt to even get on a bike.  On Sunday morning though, I managed to complete the 10-mile ride, gaining energy as I biked along the route.

This wasn’t some miraculous achievement I pulled off, rather, it epitomizes what I have believed and continue to believe since my original surgery in 2004:  that what keeps me going, the reason I am still here today, is the support of my family, friends, and larger community.

I truly believe I was able to bike the 10 miles because of the energy of everyone around me both there in person and afar.  This ride was a success not because of one individual, but because a community came together to be there for one another.  Together we raised over $35,000 for brain tumor research!  But our success goes beyond the number of dollars raised…it includes the community of hope that was forged.  That community includes the over 45 riders in Boston, Chicago, and Bali…the more than 500 people that donated to our team…and the countless messages of support in the months leading up to the ride.

After my speech, I received a heartwarming hug from a mother whose son passed away at 23 years old, my age, from a brain tumor.  In our brief moment of embrace I apologized for her lost, but she responded by thanking me for continuing to live on in the way she would have wanted for her son.  And that’s really what this is all about…

On Sunday and in the months leading up to the ride what united us was not just the impact of brain tumors, it was an appreciation of and love for life.  It was recognizing that what life is all about is being there for one another.

To me, recognizing the importance of the present means appreciating all of the people by your side.  And just like the success of the ride could not have been achieved alone, my journey with brain cancer will not be one I walk alone.  I had the amazing privilege on Sunday to witness all of the support I have.  With that privilege, I believe, comes a responsibility to in turn be there for all of those around me…my family, friends…my community.  Because when it all comes down to it, what is truly important in life is being there for each other.

So thank you for being there for me, for giving me strength, and for giving me hope.  It was a day I will never forget, so let’s keep on riding…and keep on living!

Check out photos from the weekend below:

The Boston Brain Tumor Ride is finally here: Help us reach our goal!

The weekend we’ve all been waiting for is finally here!  This Sunday is the Boston Brain Tumor Ride!

We are so close to our goal of $30,000 that will help spark new research for the National Brain Tumor Society’s Oligodendroglioma Research Fund and Pediatric Initiatives.

Please help us reach our goal by following this link and donating:  http://www.braintumorcommunity.org/site/TR/TeamraiserEvents/BostonBrainTumorRide?px=1085407&pg=personal&fr_id=2410

No amount is too small.  Every dollar raised provides hope for people like me around the country and the world impacted by brain tumors.

Uniting for a cure