Tag: #BTAM

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.”