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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Why I Ride…Please join and support the 2016 Boston Brain Tumor Ride!

Click HERE to join my team for the 2016 Boston Brain Tumor Ride!

Yesterday I went to Dana Farber for my latest MRI scan.  During the weeks leading up to the scan I was incredibly nervous.  I have spent the past 3 months studying for the MCAT and preparing to apply for medical school.  I have started re-imagining my future after a year of only being able to focus on treatment.  As the scan approached, a whole array of scenarios played through my head.  What if the scan showed further growth?  Was all the time I have spent to regain my strength and continue forward with my life for naught?  Will I have to start treatment again?  There were no limits to where my imagination would take me because living with a giant question mark in your head naturally creates a lot of unknowns.  Over the past 3 months I have been working hard to get back on my feet.  Every now and then I would experience significant fatigue or long stretches of nauseating headaches.  I would think to myself, are these symptoms of the tumor in my head, or simply a cold?  So as I tried to lay still in the noisy cylinder of the MRI machine, all of these questions…these potential scenarios…continued to play out in my head.

I waited in the exam room for Dr. Wen with my mom, thinking that the longer we waited, the more time he was spending looking at the MRI scans, and surely that couldn’t be good.  I prepared myself for how I would react if we received bad news, but ten minutes later, Dr. Wen walked in, and said, “The scans look good!”  Suddenly I felt all of the weight I had built up fade away.  Dr. Wen showed us a comparison of the scans from yesterday and three months ago.  Not only has there been no further growth, but the tumor may have shrunk a little due to the lasting effects of the radiation treatment.  Oddly, this was not one of the scenarios I prepared for, so I sat there happily surprised and a little speechless.  Everything is stable, which is what we were hoping for!

I knew that it wasn’t healthy nor productive to let my mind drift into scenarios of what may happen every 3 months I get a scan.  I had to put some boundaries to my uncertainty in order to better manage my expectations.  I needed some more information.  To do this, I had to ask Dr. Wen a question I pretty much knew the answer to, but had put off asking until now.  This is what I asked him:  “Dr. Wen, I know there is no crystal ball, but given your experience is it fair to expect that the tumor can continue to remain dormant permanently, or is it likely it will come back again?”  Part of me expected Dr. Wen to pull the usual doctor trick of sidetracking away from a question like this, but instead he decided to answer me honestly (…one of the many reasons why I trust him and think he is an exceptional doctor).  He responded that more often than not, these types of tumors come back.  It wouldn’t be any time in the immediate future, but since there is no way to get rid of every cancer cell, at some point, those cells will start growing again.  There is no way though to know how long that will be.  He also stressed that there are many new treatments coming down the pipeline that will hopefully be ready to use by the time I would need it.

One of those treatments is already undergoing clinical trials, and targets IDH mutations (…which are commonly found in glioma brain tumors).  About a year ago, I had my original tumor tissue genetically sequenced as part of a larger research study at Dana Farber.  The researchers found that while I don’t have the IDH1 mutation, I do have a mutation for IDH2.  This type of mutation pattern is uncommon in gliomas (<2% of cases), but has been found more often in my class of tumor, oligodendrogliomas.  Despite having an incredibly rare tumor, the trials being conducted may at some point lead to a treatment for me.  It is this prospect of new treatments that gives me some reassurance to keep moving forward, and why funding and support for brain tumor research is so critical.

In the grand scheme of the brain tumor world, I am incredibly lucky.  I say this because although I will never be cancer free, I have time to wait for better treatments, and perhaps someday a cure.  Over the past year, I have met some amazing people (younger and older), who are going through their own experience with a brain tumor.  Some of these people are doing well like I am, while others are courageously working to keep their tumors under control (…to have as much time as possible).  Sadly, a few of the people I have met passed away.  One of those people was Nathan, a college student just a few years younger than me who was diagnosed right around the time I received news about my recurrence.  I never met Nathan, but we corresponded through messages back and forth, and his writing inspired me to keep pushing forward during a time when everything seemed pretty bleak.  I followed Nathan’s writing throughout his experience, and he continued to maintain a positive attitude even under the worst of circumstances.

The reality of knowing I will have to face this tumor again, but having no idea when, is pretty daunting.  I could let this uncertainty consume me and live under a state of anxiety every time I go in for my next scan.  However, it is people like Nathan who inspire me to push beyond the unknown, to choose to appreciate the time I have, the people around me, and live in the moment.  There is a quote I like, “To live is to suffer, to survive is to find some meaning in the suffering.” As I’ve said before, we all face challenges and uncertainty in our life.  Those challenges don’t define us.  What makes us who we are is how we respond to what life throws at us…what meaning we can derive from the vast array of suffering that naturally occurs throughout life.

As someone who has lived more years with a brain tumor than without, I believe one way for me to find some meaning in what I have been through is to use my experience to help others.  We live at an incredible time when medical breakthroughs for brain tumor treatments are just around the corner. It is these treatments that give me a sense of security to continue moving forward even when my destination is uncertain.  It is these treatments that have the potential to save so many lives during a time when brain tumors are one of the leading causes of cancer related deaths in children and young adults.  And it is these treatments that give people like me, and countless others throughout the world, a reason for hope.  These treatments will only be possible though if there is funding to support brain tumor research.

That is why I ask you to join me as a rider for the 2016 Boston Brain Tumor Ride on May 15th.  It is the people who have the most at stake (…patients, survivors, family, and friends) who need to lead the way to a world without brain tumors.  If that is a world you believe in, then please join Team Jeremy as a rider.  You can participate in Boston with us, or as a virtual rider from afar.  Last year we raised over $36,000 and while there are less than 2 months until ride day, I want to maintain a similar ambition.  If you can’t join as a rider, then I ask you to please donate to support the ride and brain tumor research.

When the day comes that I have to face my tumor again, I want to know that I did everything I could to create a better world where less people have to go through life living with a brain tumor.  Every dollar raised does not just give me hope for a better future, but provides hope for the hundreds of thousands of people around the world who are living with brain cancer.  Please join me, my family, and friends on Sunday, May 15th for the 2016 Boston Brain Tumor Ride.

Thank you,

Jeremy

Click HERE to join my team for the 2016 Boston Brain Tumor Ride!

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

1 Month from Ride Day: Please join and donate!

It is exactly one month until the 2015 Boston Brain Tumor Ride!!!

So far we have 29 riders signed up on our team, and have raised over $16,000!

Thank you to everyone who has already contributed to the ride.  Our goal is to raise $20,000, but I know we can raise even more.

Please consider signing up and joining our team!  Even if you can’t be at the event in person, you can still participate from where you live as a virtual rider!  Follow this link to JOIN OUR TEAM!

It is going to be a great day riding for such an important cause.  All of the money raised will go to advancing brain tumor research, developing treatments, and finding a cure.

Also, as a bonus, everyone on the team will get a T-shirt with the fantastic design shown above.  Thanks to Laurie Bean and Neil Quigley for putting together the amazing design!  It represents how our team is made up of people from all around the world, supporting a cause that impacts hundreds of thousands of people worldwide.

If you can’t ride, please consider donating HERE.  No amount is too small!

Below is part of a Facebook Interview I did with the National Brain Tumor Society about why this ride is so important to me:

4) Why is raising funds for the National Brain Tumor Society important to you?

Raising funds for this event has always been important to me because I want to see a day when kids and their families don’t have to go through the experience I had in my childhood. A brain tumor diagnosis comes with a lot of uncertainty about the future,and a lot of pain not only for the patients, but their family and friends as well. This past November, during what was supposed to be a brief Thanksgiving vacation home, I found out my brain tumor had grown back. At 23 years old, when I finally felt like I had moved forward with my life, the news was devastating. Suddenly, my life was on pause, brought back into the whirlwind of appointments, tests, fear, and anxiety. Because of the location of my tumor in the motor strip, it is not possible to operate without paralyzing my right side, but I am not without hope, and that is because of the advancements being made in brain tumor research. Since my original diagnosis in 2004, the way we approach and treat brain tumors has evolved tremendously. I just recently finished proton beam therapy, and will begin a year-long cycle of oral chemotherapy. This will hopefully keep my tumor at bay long enough for new treatments to be developed, which will only happen if there is funding for brain tumor research. I am lucky that my tumor is currently slow-growing, providing me with the time to wait for the development of these potential treatments. I am definitely not alone in my situation, and many people do not have the luxury of time to wait. Thousands of people around the United States and across the world hold onto some hope that treatments will be developed, and cures will be found. It is truly a global effort, one that doesn’t get nearly enough funding or attention it requires. With the ease of communication and social media, it is finally possible to grow a movement worthy of the cause. That is why we need as many people as possible to raise funds for the National Brain Tumor Society, whether it is at the ride in Boston, at another event, or virtually, because the larger the community, the more hope patients like me will have for a better future.

The Wacky Haircut for Brain Tumor Research…Thank you for Donating!!!

You Donated…And I got a pretty wacky haircut because of it!

In just one week, we raised $2,014.36 towards brain tumor research (…and a wacky haircut)!!!

Here’s the new hairdo:

Front and BackA BIG thank you to “Eddie” Eduardo Tramontozzi for offering your wonderful artistic talent and time to the most stylish monk-cut I have ever seen! 

Below are some photos of the process.  It was a blast getting my haircut with Eddie!  Everyone around us was a bit perplexed at first (…especially the customers walking in), but once they knew what the haircut was for, we all had a great time.  Thanks to Salon Arte for offering the space, and not being afraid that customers might run away once they saw my haircut in progress.  🙂

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Thank you again to everyone who donated over the last week!  Our team is already 60% of the way towards our $20,000 goal!  There are still 70 days left until the Boston Brain Tumor Ride on May 17th!  Please support crucial brain tumor research by joining the ride or donating.  Together, we can create a future with better treatments, and eventually a cure for brain tumors!  CLICK HERE to support the ride!

Thank you again to everyone who donated, Eddie, Salon Arte, and also my mom for helping organize the haircut.

Before and After Group Shot

(P.S. if anyone wants to join me, I think the monkcut is pretty trendy…)