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!

Done with treatment, MRI is “stable”… so what’s next?

Today marks a year since I started writing this blog.  I made this blog with the intention of keeping everyone informed about my situation and hopefully give some insight into what it is like to go through this journey. While I haven’t kept up with writing as much as I hoped, I am happy I have created this platform to digest my thoughts and share them with others.

This past week I had my MRI and appointment with my oncologist, Dr. Wen.  It was my first appointment since finishing treatment last month.  The MRI showed that everything is “stable.”  This means that there has been no change in the tumor’s size, so we can now transition from treatment to monitoring every 3 months.

“Stable” is an odd and emotionally conflicting word.  It is not joyous like hearing the words “remission” or “cured,” but is more mundane…the status quo.  Yet in my situation, and often in the world of brain tumors, “stable” is the most I can hope for.  The past 8 months of chemotherapy was meant to stop any further growth of the tumor, and since my tumor is inoperable, keeping it dormant is the best case scenario.

This doesn’t mean that my MRI results are not worth being happy about.  Over the past year I have immersed myself within the brain tumor community, and sadly some of those people have recently passed away.  I recognize how lucky I am that my own circumstance is “stable,” and to not take that for granted.

I still have trouble though celebrating this moment.  Given the slow-growing nature of my tumor, we wouldn’t expect to see any changes (good or bad) for another year or two, so maybe it is that uncertainty that bothers me.  Perhaps the issue is that I know there will never truly be an end point to my journey where I can leave my cancer behind because the reality is that my brain cancer has turned into a lifelong illness…a chronic disease to be managed.  This idea of “living” with brain cancer is something I hope to write more about in the future as I am unsure what that truly means both in the short and long-term.

What I am incredibly happy about is finally being done with treatment.  After 6 weeks of a mix of proton radiation and chemo, followed by another 8 months of chemo, I am ready to regain control over my body and life.  The past year of treatment was a lot harder than I expected, particularly the fatigue and weakness I experienced.  I am looking forward to regaining my energy, and finally feeling like myself again.  To start building back my strength and live a typical 24-year old life.

To be honest though, I am a bit worried about making this transition.  Just a week after finishing my last cycle of chemo, I went abroad to Paris for the U.N. climate change negotiations.  While I have a lot to say about the negotiations (…that’s for a different blog post), the experience was rather eye-opening on a different level, particularly related to how starkly different my life has been over the past year.  It was the first time I was working a full schedule, and even the first time I went out at night dancing since I left Bali back in November, 2014.

In some ways over the past year, I have existed in a completely different world.  Now that I am finally able to step out of that world, I am feeling a bit culture shocked.  To be able to start focusing more on my future, to be able to start dating, to be able to get a job, to be able to go out at night, to be able to simply start working out again…those are just a few of the many things I look forward to.  Yet even with the excitement of those possibilities it is pretty overwhelming, particularly as it exists under the umbrella of uncertainty.

But I am ready to start picking up the pieces.  As I do this, I need to keep in mind that it will be an ongoing process.  Even though my treatment is over, my life won’t immediately return to the way it was before, nor do I want it to.  I have learned a lot over the past year (…too much to recount in this post), but one of the most important things I have taken from my experience is to embrace the moment I am in, and the people I am sharing it with.

So that is what I plan to do.  While the uncertainty remains, I have the opportunity now to start putting my life back together however I want to.  That is both exciting and incredibly nerve-wracking.  The “stable” MRI is more the end of the beginning rather than the end, but I’ll continue to move forward.  To move forward enjoying where I am even when it is often unclear where I am heading.

In the meantime, I want to thank everyone who has supported me from close or afar overt this past year.  There are too many people to name in this post, but please know how appreciative I am for all of the support I have received that has helped me get through this first major step in what will be a long journey.

 

Melting Chocolate…an emotional struggle with cancer

 I am currently two weeks through treatment, and besides some stomach issues and fatigue, I’m actually feeling pretty well.  While I undergo proton therapy, I am living in an apartment in Cambridge in the same building where my dad is, making it really easy to get to my treatments every day.  It has been nice to have a routine (…even if that routine is made up of continuous treatments and appointments).  Living in the city has also offered me a bit of independence as well as opportunities to see my friends more often.  While the side-effects of treatment will increase over the coming weeks, everything has been going pretty well.  Throughout this experience it is truly a blessing to have consecutive days feeling good about the situation…because the journey can be an emotional rollercoaster where some days or weeks, you just feel like crap…physically and in particular emotionally. 

A little over a week ago, I had a good friend, who is also going through her own journey with cancer, come visit me in Boston.  During one of our many multiple hour-long conversations, we started talking about the negative emotions that emerge with cancer, and how hard it can be to quell those emotions.  My therapist who specializes in young adult cancer at Dana Farber, suggested that I try to externalize these raw emotions.  In an attempt to follow my therapist’s advice, my friend and I finally came up with an externalized version of my emotional state…a chocolate kingdom (…because everyone knows that I am obsessed with chocolate!).  On a good day, all is well in this hypothesized chocolate kingdom, but sometimes when these negative emotions emerge, part of the kingdom starts to melt.  Usually, I have the ability to quickly address those emotions and stop the melting; however, during the two weeks before my treatment, the chocolate was melting faster than I could fix it.  The following post is about those two weeks and the larger emotional struggle involved with having cancer. 

This post was written the weekend before starting treatment on Friday, February 6th:

The past two weeks have been difficult since finding out about my treatment plan.  I have been busy with a lot of preparation appointments for the proton therapy and chemo that will begin this Monday.  These past two weeks have probably been the most difficult time since finding out about my recurrence.  Originally, my time was consumed with tests and consults, reading articles, and thinking about my potential treatment options.  My mind was constantly at work or distracted, but now that everything has been decided and the analytical planning period is over, I am left having to ride the wave of the next 6 weeks of proton therapy and a year of chemo.  I am left facing all of the emotions that have been boiling up over the past two months, but I have been too busy to feel…until now.

One of the most difficult challenges I have had to face is my loss of independence.  For the past year and a half, I have been living on my own on the other side of the world.  I had a house, a job, and the ability to do things when I wanted to do them.  I came back to Boston for what was supposed to be a month vacation that has now become at least a year-long stay.  I went from complete independence to full dependence on those around me.  I have been living at home, no job, and no way to get myself around places.  Due to my seizures I am unable to drive, so I have to rely on others to travel.  There are so many people in my camp who have offered to give me rides, or come out to where I am, which I am incredibly grateful for.  It isn’t the difficulty to go somewhere that is hard, but the inability to go do something when I want to go do it.

For the past two months I have been living out in Concord at my mom’s place.  It is the first time I have lived at home for an extended period of time since leaving for college.  Concord is a beautiful place, my mom’s cooking is amazing, and in all respects, I have everything I would need.  The loss of independence though, amplified by the inability to get myself around, has brought feelings of isolation.  Isolation is defined as the state of being placed apart, detached, or separated from others.  According to this definition, I was not actually isolated because I have been truly blessed to have the support of my family and friends throughout this entire process.  So why did I feel isolated?  Yes, I couldn’t get myself around places and was sometimes stuck in Concord, but with one phone call I had a support network willing to get me wherever I wanted to go.  Thus, I think the isolation didn’t necessarily stem from the circumstance, but was rather perpetuated by my own actions…or inaction.

I wrote in previous blog posts about feeling guilty and burdensome.  I’ve written how these are natural feelings, but can’t be dwelled upon both for my own health and the sake of those around me.  Over the past two weeks though, I had lost that understanding.  It is this disconnect…between what I know I should be feeling to cope with my experience, and what I am feeling that has caused the greatest pain.  Most people know that I usually can keep my emotions in check (…except for my “sensitive” tear ducts…a.k.a. crying).  I am a very analytical person, and thus I process a lot of things internally before I react.  This ability has helped me a lot throughout life, but over the past two weeks, it has been my curse.   Now that things are starting to settle down, all of the raw emotions I had been storing away over the past two months have been slowly surfacing like a monster climbing out of a deep abyss.

Where do these emotions come from?  I think fear…Not fear of my treatment, but fear that I am/will not do enough to give myself the greatest shot at a good outcome.  The physical aspects of cancer are out of my control.  The treatment plan is set, the radiation and chemo will make me feel sick at times, and will have an unknown impact on my tumor.  What I can control is how I react to these uncontrollable situations.  What I can control are the aspects of my life (i.e. eating, exercise, emotional well-being) that are intertwined with my physical outcomes.  I want to give myself the most amount of time I can get before another recurrence.  Over the past two weeks, I have been scared when I am unable to manage the controllable factors of living with cancer.  This fear has translated into strong emotions of irritability, leading to increased isolation, which in turn perpetuates my irritability…An endless downwards cycle (…or a perpetually melting chocolate kingdom).

It is often the smallest things that have set off my emotions, like missing an appointment or being late because of the weather.  Beyond that, I have continued to have seizures, headaches, and significant fatigue.  The seizures are literally a period of being out of control, but don’t affect me too much emotionally because I understand they are merely a symptom of my tumor.  The headaches and fatigue on the other hand create a more difficult situation.  These physical symptoms increase my feelings of irritability, which in turn amplify the headaches and fatigue.  With brain cancer it is often difficult to discern whether or not the physical symptoms I am feeling are due to the tumor, emotions, or both.  There is no fine line between physical and emotional health with brain cancer…it is a blurred continuum.

When these raw emotions surface (i.e. irritability, fear, etc.), I internally recognize them.  I understand that they are natural feelings, but unproductive to making me better.  I understand that these feelings stem from a fear of uncertainty and a lack of control.  I understand that there is no point to let that uncertainty overcome my life, but to focus on the present and live every moment to the fullest.  I understand all of these things, even at the same moment I am feeling these raw negative emotions.  This recognition of what I should be feeling are in reality the coping mechanisms I have developed throughout my life dealing with cancer.  Despite that, over the past two weeks, I have been unable to calm these raw emotions (…I have been unable to stop the chocolate from melting).  My inability to control these emotions despite my analytical understanding of the entire situation makes me frustrated with myself, so I shutdown.

Over the past two weeks this has usually occurred while I have been with my mom or her partner, Mark.  While not intentional, my process of shutting down ends up hurting those around me.  I have explained to my mom several times that my frustration stems from the circumstance I am in, and is never personally directed at her, but that does not take away the sadness and hurt a mother feels for her son.  I recognize that my actions have been creating that hurt, which makes me even more frustrated with myself.  It increases my feelings of guilt, and that my situation has brought this significant burden back on my family.  This in turn has further perpetuated these raw emotions that I have been unable to control, and the endless cycle of fear, isolation, irritability, and hurt has continued and built up over these past two weeks, creating further disconnect between myself and those I care about.  My effort to protect others from my pain was creating more suffering for myself and for those around me.

On the night I was writing this post, I was going to end my thoughts by saying that I did not know how I was going to overcome this emotional challenge, except for hoping that time will be the answer.  However, while eating dinner, Mark finally pushed me to open up about everything…so I laid it all out there…everything that I have written above, and then some.  Over the past two weeks, I feared that doing this would make everything worse because I thought that all of my emotions had been triggered by my lack of independence, stemming from my current living situation.  I did not want my Mom and Mark to blame themselves for these feelings just because that is where they happened to be living at the moment.  But I was wrong.  These emotions were not stemming from a lack of independence, but rather from feeling like I couldn’t talk about the struggle between what I am feeling and what I know I should be feeling to cope with my situation.  For someone who normally has a grasp on my emotions, I felt embarrassed and weak that I couldn’t control these raw emotions that were building up, so instead I would shut down.

We continued to talk for about an hour, where I was pushed, and then continued to be vulnerable about the emotional challenge I was experiencing.  I had written a lengthy post a month ago about vulnerability, and I am even ironically reading a book on it as well.  Over the past two weeks though, I haven’t been able to walk my talk, and I think that is what was scaring me the most.  When I finally opened up about all of this, I felt some weight off my shoulders.  Now that my mom and Mark knew what was going through my head, I didn’t have to worry about filtering or isolating myself to protect them.  I could say what I felt, and most importantly they finally understood.

I wish that one dinner conversation could be an inspirational ending to a rollercoaster of an emotional post, but I think it was just the first step in my emotional struggle with cancer.  I am going to keep having this tug-of-war between my raw emotions and what I know I should be thinking/what I know is best for me.  Being vulnerable isn’t the full answer, but it is definitely the first step in overcoming this because it helps others understand my struggle, as well as lets me understand how others around me are feeling.  I will still need to develop strategies for when these raw emotions emerge by first accepting them, and then putting them at bay rather than shutting down…but that will come with time.

In the meantime, I start treatment this Monday.  I have moved into a single apartment in the same building where my Dad is living in Cambridge for the 6 weeks I am undergoing proton therapy.  The apartment is right across the river (and one T stop) away from Mass General.  I am incredibly fortunate and thankful to have this space during my radiation treatment, so that I can gain back some independence as well as have the ability to get myself around places via public transportation.  As I mentioned before, this apartment, and the independence that comes with it won’t fix my emotional challenges with cancer.  It will  give me a space though to develop strategies and a mindset that I can take with me after the radiation as I go into the long one-year chemo process.  What is important over the next 6 weeks is that this increased independence does not evolve into increased isolation, and the only person that can make sure that does not happen is myself.  I will need to be more vocal and vulnerable than ever with my family and friends about how I am feeling and what I need for support.  In turn, I will need some pushing to make sure I keep being vocal because the opposite…(shutting down like over the past two weeks)…will be detrimental to both my physical and emotional well-being.  It will be a team effort, but as I go into my treatment, I am confident it can be done.

This is one of those posts where I consider whether or not I am being too vulnerable in my blog.  I worry about that sometimes.  Vulnerability is good, but when it is like opening the flood gates of emotions on others, it can sometimes lead to disconnection.  This post involved having to be pretty vulnerable about my emotions, but I think it is very appropriate for this blog because I am not the only one who experiences these feelings.  I have talked with other cancer patients, particularly young adults, who experience the same struggle between what they are feeling, and what they know would help them cope with their situation.  I am confident this emotional tug of war happens to people impacted by all different struggles in life (…illness, relationship challenges, money problems, etc.).  This commonality in emotional experience is why I think this blog was so important for me to write.  We all may feel alone in what we are experiencing, but more often than not, there are others going through similar feelings and situations…we just don’t talk about it…we don’t share…we don’t choose to be vulnerable.  When we are vulnerable and recognize this commonality in emotional experience, it brings us closer together.  It creates a unifying bond and connection.  It allows us to recognize the challenges we all face, and instead of moving forward alone or shutting down, helps us take a step forward together…stronger.

As a reminder, the above post was written the day before my treatment began.  To the worried grandmother reading this, I am doing much better.  Talking and writing openly about these struggles has been a healthy way for me to cope with these raw negative emotions…to get my chocolate kingdom to stop melting.  If you have ever made chocolate fondue, you know chocolate can be overcooked.  If you let the chocolate keep melting, eventually it will thicken.  This is true for emotional challenges as well.  If you let the raw emotions I have discussed fester without opening up about it, it can become paralyzing.

I like my chocolate metaphor not only because I think it is the best food in the world (…after my mom’s homemade Mac & Cheese), but that chocolate, like one’s emotional fortitude, can be remolded.  When chocolate melts, it can be shaped into something new.  I view my cancer journey as 1/3 physical…2/3 emotional.  The raw emotions I discussed will keep emerging, the chocolate will occasionally melt…but I know I can keep moving forward if I recognize those emotions, and learn how to use them to improve my character and understanding of my experience.  To be able to remold my chocolate kingdom into something more resilient…something stronger.

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

Medical Update 4: Day 1…Treatment Begins

Nothing like a cold blizzard to start off my first day of treatment!

Snowy OutsideReady to go!

Today was my first day of proton therapy at Massachusetts General Hospital’s Burr Proton Center, the first place in the world to perform proton therapy on patients.  It started at Harvard, and was later moved to MGH…but needless to say, they are the experts!  There are actually only about 14 centers in the United States, and 14 internationally.MGH Burr Proton CenterFor the next 6 weeks I’ll be going to this center 5 days a week for treatment.  The good news is that each session lasts only about 20-30 minutes (…which consists of mostly just preparation time).

Last night I started taking the oral chemotherapy called Temozolomide (…Temodar for short), along with a whole host of other medications for nausea, possible infections, etc.

BiohazardFirst Chemo Pills

It was a little nerve-racking receiving the medication in a biohazard bag, but I went ahead and took my first of what will be many doses of chemo.  (…for any of the Luce family reading this, I watched your video immediately after taking the chemo, and had a great night sleep).  I will be taking a low dose of the temodar 7 days a week while I undergo radiation because it helps sensitize the brain tissue, increasing the effectiveness of the proton therapy.  After the proton therapy, I’ll begin a higher dose chemo regiment for a longer amount of time.

This morning I walked into the center joined by both of my parents.  Normally I’ll go in for treatment on my own since it is so easy, but I wanted my parents to see the process.  Having them there also helped reduce some of the first time jitters I was feeling.

Before getting onto the machine, the techs had to strap on the very glamorous head-gear:

The Head-Gear

No, its not a muzzle to prevent me from talking…the head-gear locks into the machine and keeps my head completely still.  The proton beam therapy has to be very accurate, so the most important thing is to not move.  The above photo was taken two weeks ago during a preparation appointment to make the head-gear.  The mouthpiece is a mold of my upper jaw, similar to what you get at the dentist.  The back padding was molded specifically to my head, and the straps keep it nice and snug.  It doesn’t hurt at all, but just feels like a lot of pressure.  The gear does make it difficult to speak, but I have 6 weeks to perfect the proton head-gear language.

Once the head gear was on, the techs strapped me into the machine:

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It is pretty sci-fi looking…right?  You can see the head-gear is locked into the machine, and I am strapped to the table so I don’t fall off…hopefully.  You may have noticed I’m at an angle.  Don’t worry…I didn’t get onto the table like that.  The proton center has three machines.  In two of them, the patient lays flat, and the proton beam arm moves around the patient.  Those machines are normally used for kids, elderly, or people who can’t move very well.  Since I am relatively young, fit, and good-looking (…those are my doctor’s words, not mine…well with some of my own embellishment), I get to enjoy the “fun” machine.  On this machine, the proton beam arm stays still while I move around the arm.  Essentially, I get to ride an amusement park ride every day for the next 6 weeks.

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The black square behind my head is for the x-ray.  Once I was strapped into the machine, the techs take x-rays to line up my head in the right position.  You might ask…how do they know what the right position is?  Well…that’s the fun part.  On the same day I had my head-gear made, I had three tiny beads drilled into my skull.

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Don’t worry…it didn’t hurt at all.  I have two beads at each corner of my forehead, and one towards the back, left side of my head.  This creates a triangle so that the techs can triangulate the correct position using the x-rays.  I’ll have the beads for life, and thankfully they aren’t magnetic…but I sure do hope they aren’t actually tracking devices or brainwashing technology (…if you do notice a drastic change in my personality, or zombie-like tendencies, then just blame the beads).

It is actually really neat technology though.  When I had the beads implanted, they took a CT of my head.  Using the position of the beads in relation to my tumor, my doctor and a physicist calculated the exact angles I will need for the proton therapy.  The techs triangulate my head, and the machine does the rest with the pre-programed angles.

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The arm on the right is where the proton beams come from.  The arm comes out of the wall, and is connected to the cyclotron (a.k.a. the big fancy particle accelerator machine that produces the protons).  There is only one cyclotron, so the techs all in one remote-controlled room take turns using the machine to deliver the proton beams.

What is so special about proton beam therapy, and why am I strapping myself into the machine to do this?

(since you asked the question, I’m going to introduce a little bit of science, so if you just want to skip down to more pictures…I don’t mind)

An atom’s nucleus consists of protons and neutrons.  The protons have a positive charge.  When focused into a beam, these charged particles can damage the DNA of cells, and since cancerous cells characteristically divide faster than normal cells, cancerous cells are more vulnerable to the proton beams.  Protons also have a relatively large mass, so when they hit another mass (i.e. the skull, brain, tumor, etc.) they tend to stay along the aimed path, rather than scattering in different directions.  This is good because it reduces the impact on healthy tissue near the tumor.  In addition, the distance the protons travel can be controlled because all protons have a specific range they will travel based on the initial energy.  The doctors and physcists can thus program the proton energy and angles so that the protons enter my head, impact the tumor, and stop before going further into healthy brain tissue.  This is why I am able to avoid the cognitive side-effects because the proton beam stops before entering the front part of my brain that controls cognition.

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You can see from the above diagram that the proton beams can be programmed to die off at the specific distance where the tumor is located…PRETTY COOL!

(now done with the science lesson)

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After the first position, I was turned almost 90 degrees to my right side.  The techs said that the positions will always be different…so it won’t always be this fun…oh well.  After a total of about 30 minutes, (including set-up), I was in and out of my first proton therapy.

Starting the chemo and proton therapy was definitely a little nerve-racking, but it feels good to finally start treatment after this long two month process of figuring out the best treatment plan.  As my doctor has said, the next 6 weeks will give me the biggest bang for my buck in terms of treating the tumor…so here’s to hoping for an effective 6 weeks.  There will be both good and bad days, I’ll end up loosing some of my hair, but I am incredibly lucky to have access to these medical facilities, so in the meantime…thumbs up!  (…or I guess in this case…sideways!)

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‘Serendipity’…a story of friendship and support

My best friend from Indonesia, Tya, wanted to learn how to use an animation program.  She chose to make her first video about our serendipitous friendship, as well as raise awareness about the National Brain Tumor Society’s Boston Brain Tumor Ride.  Tya is helping organize a group of virtual riders who will participate in the ride on the same day from Bali.  If you believe in advancing research for better treatments and a cure for brain tumors, I encourage you to join Team Jeremy May 17, 2015 no matter where you are in the world.  These funds will support research that will create long-lasting benefits for all people affected by brain tumors.

Click HERE to go to the team page, and join as a rider!

Thanks Tya for making such a great video and I look forward to riding with you all from opposite sides of the world on May 17th!  Tya is writing an awesome blog too about various activities people can do to step outside the ordinary schedule of their day and try new things.  Check out her blog at #363UnlazyDays