11 Years Later…What’s Changed…What Hasn’t? Please support Brain Tumor Research!

Please support the National Brain Tumor Society’s Boston Brain Tumor Ride by donating to Team Jeremy

Yesterday, 11 years ago, I stared up at the lights of the operating room at Mass General Hospital, counting down with the anesthesiologist as I was about to undergo brain surgery that would change the course of my life.  Most people have already heard my story, so I don’t want to repeat it again, but as I begin my second week of proton therapy treatment, I find myself roaming the halls of Mass General, some familiar…some new.  For brief moments in time, I am brought back to my three month stay in the hospital.  The moment I woke up in the ICU paralyzed on my right side…the moment I first moved my leg…the countless hours of therapy to relearn how to walk as I stared out the window that had a perfect view of the hospital’s helipad.  The moments people came to visit…celebrating my mom’s birthday in the common room…playing video games with my brother to regain movement in my hand…sitting in the courtyard with my dogs, Jackie and J.J….and getting special permission to go out to eat for the first time.  I walk through these halls every day now for treatment, and every now and then these ghosts of my past flash by.  In these brief moments I feel transported back into my 12 year old shoes, as if nothing has changed, but then I quickly realize how much has changed…in my life, in my medical situation, in the lives of those around me, in the current state of medical knowledge…in the hallways and buildings of the hospital. So much has changed since 11 years ago.

The boy who laid paralyzed in bed never would have imagined the adventures that would unfold over the past decade:  steering a tall ship under the starlit skies of the Atlantic Ocean…participating in a sea cucumber harvest in a remote coastal community in Madagascar…becoming an EMT and treating patients…climbing to the summit of a fog-covered volcano in the remote Banda Islands of East Indonesia…embracing the culture of Bali…soaking up the sites, smells, and tastes of Southeast Asia…diving with sharks in South Africa…meeting amazing friends from all corners of the world!  The further I got into my adventures…the more I forgot about that 12 year old boy.  Now, the further I get into my treatment…the more dream-like and distant those adventures feel.  Those experiences though, and in particular the people I have met, will never fade away, but will continue to be a core part of who I am moving forward.

Not only has my life changed, but the lives of those around me have also.  It’s strange at times sitting in the exam room waiting for my doctors to arrive…my mom and dad across from me.  A photographer could overlay a photo of this scene on top of my appointments 11 years ago, and to the observer it would look like nothing has changed…but so much has.  At 12 years old I could listen and ask questions, but I was at the mercy of my doctor and parents about whether or not I would be involved in the conversations.  Now, I am the one making the decisions, deciding whether my parents are sitting in on the conversation.  My parents are no longer married, but now they each have partners who make them happy.  My brother and sister face similar emotional hardships that came with my cancer before, but our relationships are now so much stronger since we can openly talk with each other as adults.

11 years ago, my family, friends, and community rallied around me, and gave me the support to keep moving forward.  Those same people, and so many more, are again by my side to help me through this.  Teachers who in the past helped me immensely get back into a normal school routine and succeed, therapists I worked with, family friends, and countless others are again reaching out to support me 11 years later.  One of my biggest regrets from my initial experience was that I pushed my friends away out of embarrassment over my condition.  Now, I am fortunate to have such a large support network that has grown throughout the years…so many shoulders to lean on…friends to pass the time with.  Throughout middle school and high school I was closed off about my condition.  Now, I am writing about it freely on the internet…opening up, and making vulnerability and authenticity goals I hope to achieve and continue to move forward with beyond my treatment.

Medical technology has evolved immensely over the past 11 years.  After my first seizure in 2003, MRI results were viewed on film.  In the course of a few months I saw images of my brain on the computer for the first time, and then had a functional MRI at Mass General (…the only place in Boston that had one at that time).  Now, I am receiving some of the most advanced forms of cancer treatment available (…including proton therapy and oral chemo pills).  While I am still familiarizing myself with the current brain tumor research landscape, from my experience, knowledge about brain tumors has evolved, in particular the molecular profile and how those features impact responsiveness to treatment.  There are even clinical trials for targeted therapies starting for several types of brain tumors.

While a lot has evolved about our knowledge of brain cancer, there is still so much we do not know.  There are so many treatments yet to be developed…cures not yet discovered.  As I walk through the hallways of Mass General, what hasn’t changed over the past decade is the feeling of uncertainty.  I have no idea what the future has in store…No idea how many years my current treatment will give me before another recurrence.  It wasn’t until just this year that the first level-1 randomized trial about oligo tumors was released (…a study started in 1998 and still yet to be published).  This study though only relates to one subset of people with my cancer…a group I don’t exactly fit in to.  I’m thus left hoping…hoping for the best outcome…hoping for new treatments…hoping I have another 11 years before another recurrence, if not more.

I can’t help but feel like my life is split up into these periods that are divided by moments of medical instability and uncertainty related to my brain cancer.  I was born in 1991.  12 years later I was diagnosed with a  brain tumor.  I spent 11 years recovering and living life.  Now, I am back battling this brain cancer, while also thinking about my future…the next period I have before another intermission.  What keeps me moving forward is the hope that brain tumor research will continue to evolve…new treatments will be developed…and a cure will be found.

This will only become a reality if there is funding for brain tumor research, so on my 11th anniversary since this all began, I ask for your support…so that 11 years later I and thousands of others impacted by brain cancer can look back on our lives and say that we no longer face uncertainty.  So that we can focus on living, and continue to appreciate the beautiful changes that occur throughout our lives.

Please support the National Brain Tumor Society’s Boston Brain Tumor Ride by donating to Team Jeremy

Bench outside MGH

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