First Descents – learning to #OutLiveIt

Whenever I have trouble falling asleep, I focus in to that day on the river. Sitting in my kayak, I paddled as slow as possible, hoping that this moment would never end. I took every second I could to soak in the beauty around me: The tranquil flow of the Snake River, the ascending dry yet tree-covered mountains to either side, the crisp blue sky above, and the occasional eagle, perched on the tree-tops, watching us all float by. As I approached the turn, I could hear the rush of whitewater as my heart pounded with anticipation. Turning the corner, a series of rapids crashed ahead. I aimed my kayak straight towards the meat of the first wave, gripping my paddle perhaps a little too tight. It was my first time during a week-long crash course in whitewater kayaking where I had to navigate through rapids by myself. With no guide to follow, I had to trust my instincts. To go with the flow of the river. To be completely present.

This was the last day of my unforgettable week in Jackson Hole, Wyoming with First Descents, an organization that puts together outdoor adventures for young adult cancer fighters and survivors. This is more than a trip, it is an awakening for young people like me who have gone through the grueling physical and emotional trials of cancer to embrace the simple, yet transformative culture of #OutLivingIt. It was an opportunity for me to connect with nature, other young adults, and myself.

When I was diagnosed with brain cancer at 12 years old, I learned a valuable lesson to live life to the fullest. After my surgery and years of recovery, I took that lesson to heart. I strived to experience as much as possible. I hiked through the rainforests of Madagascar, tagged sharks, and sailed a tall ship through the bioluminescent high seas under a star-studded night sky. I explored and scuba-dived the exotic underwater world of Indonesia. For me, scuba diving was what made me feel whole. It was the last obstacle for me to overcome since my first seizure in 2003. I had to wait to be 5-years seizure free without any medication until I could take my first breath underwater. When that moment finally came in 2011 over a shipwreck off the coast of North Carolina, I was hooked.

In July of 2014, when I had my first seizure in 10 years, I lost my ability to scuba-dive…the one activity that made me feel me. More so, when diagnosed with my recurrence just a few months later, I felt fragile. After over a year of radiation and chemotherapy treatments, I felt nervous to simply take a trip from Boston to D.C.. I felt lost, and unable to recognize who I was.

When I paddled through my first set of whitewater with First Descents, I was overcome with emotions. I finally found an activity that made me feel the same way as scuba diving. Like the ocean, the river was the ultimate equalizer. Despite my physical limitations on my right side, I could paddle…and paddle well. When I scuba dived, time slowed down. Immersed in an underwater world, all that mattered was the beauty surrounding me. The same was true on the river. The river forced me to be completely present. The moment I thought about deadlines, bills, or anything other than the whitewater ahead of me, I was flipped over. Like challenges in life, the river necessitated taking each rapid step by step. If I was surprised by a wave coming in from the side, or a rock ahead, I was taught to lean into the obstacle rather than shy away from it.

My week with First Descents was so much more than kayaking. What made my experience truly special were the people I shared it with. When the program started, I was given the nickname Siren. The entire week, up until exchanging Facebook contact info on the last day, I only knew the people around me by their nickname. This may seem weird at first, but it was integral to the transformative nature of the week. With my nickname, I felt in some ways reborn: able to come into this new experience without the baggage of my past. I was enabled to embrace where I was and the people I was with. I took on the new experiences and challenges not as Jeremy, but as Siren (my #OutLivingIt alter ego). Eventually, by the end of the week Jeremy became Siren, and Siren had become Jeremy. Both identities intertwined as I moved forward.

The staff, guides, volunteers, and especially fellow young adult survivors were some of the most inspiring people I have ever met. They have left a lasting imprint on my life, and remind me to #OutLiveIt every day. What made my solo kayak on the last day so special was that in fact, I was never alone. As I turned the corner and approached the first set of whitewater, I saw one of our guides hanging off to the side watching. While I had to face the set of obstacles ahead of me by myself, I had the comfort of knowing she was there to help if needed. This was like my journey facing cancer. Yes, I had to face some parts of my experience alone, but I always had my caregivers…family and friends…there to support me and lend a hand when life flipped me over.

After the last wave, I wiped the water from my eyes and paddled into the eddy. As I rounded the corner of the rock wall, I saw every staff, guide, volunteer, and young adult survivor who I had the fortune to spend an entire week with. This is what it was all about. While each of us participating in the First Descents program had our own unique personal journey that we had to paddle through, in the end, what mattered most was that we all had each other. A new FD family.

One of my guides shared with me a fantastic quote by Jack London:

“I would rather be ashes than dust!
I would rather that my spark should burn out
in a brilliant blaze than it should be stifled by dry-rot.
I would rather be a superb meteor, every atom
of me in magnificent glow, than a sleepy and permanent planet.
The function of man is to live, not to exist.
I shall not waste my days trying to prolong them.
I shall use my time.”

My week with First Descents taught me what it feels like to be truly present. That no matter where life takes me, I will be content if I am present doing what I love, surrounded by people sharing the moment with me. I shall use my time knowing that I am always striving to #OutLiveIt.

I wrote this because I want you to know how special First Descents is. Brad Ludden, the organization’s founder, is a finalist for this year’s CNN Heroes! If First Descent’s wins, they will receive $100,000 to send more than 100 additional young adults on outdoor adventures like mine. My week with First Descents was one of the best treatments I could have ever gotten, and every young adult going through cancer deserves to have this experience. So PLEASE follow this LINK and VOTE, VOTE, VOTE! (p.s. you can vote up to 10 times!)

Thank you,

-Siren

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Gratitude

On November 5th, 2014, I left Indonesia for what was supposed to be a 3-week Thanksgiving vacation. As most of you know, this vacation turned into a rollercoaster of treatments and recovery for my recurrent brain tumor. Now, two years later, I write this on November 5th, 2016 during my first night in Sukadana, Kalimantan at the edge of the Bornean rainforest of Gunung Palung National Park. As the thunder rumbles and the insects chirp, I lay in bed under my mosquito net finally with the time to reflect on my journey that brought me here.

Time works in mysterious ways. While so much has happened over the past two years, the moment I landed in Indonesia it felt like no time had passed at all. Yet I return to Indonesia a much different person than when I left. When I found out about my recurrence, I was taken away from the life I had built for myself in Indonesia. My friends, work, and community, which had been my home away from home, were suddenly gone. Throughout my cancer treatment, I knew I had to eventually return to Indonesia.

However, when the time came to go back, I was terrified. Everyone kept saying how excited I must be to go back to Indonesia, but all I felt was discomfort and an overwhelming flood of emotions. Leaving my home meant that this past chapter of my life, my recurrence, was coming to an end. I kept asking myself, why wasn’t I ecstatic to be done with the most physically and emotionally challenging period of my life?

After thinking over this for some time, I remembered a train analogy I used when trying to explain the feeling of losing options in my treatment plan. In a blog post I wrote, “It felt like I went from having two trains I could choose to ride, to instead having one of the trains taken out of commission, and having to hop on the other one (i.e. the chemo/radiation train) that was already leaving the station.  I felt like a passenger to my own life decisions because there was really no decision to be made anymore…I felt powerless.”

When I finished treatment a year ago, I felt like the train had dropped me off at a station in the middle of nowhere. At this station, there was no map, no directions for where to go. No guide on how to reintegrate into “normal” life after hopping off the cancer train. I could have tried to follow the tracks to where I had come from, but to do so would have been impossible. Cancer changes so many different aspects of your being that returning to your pre-cancer self in many ways feels inauthentic. I decided to press forward and not look back. I continued through my recovery and medical school applications with blinders on. I kept myself so busy that I never spent time to fully feel everything I had gone through…to truly comprehend how significantly my life had changed.

As my flight took off for Indonesia, I finally had the perspective to look down at the train tracks of my journey over the past two years. I felt my muscles tightening during my seizures. I heard my doctor telling me about the new growth and saw the sorrow in my mom’s eyes. I remembered the pit I felt in my stomach when I had to weigh my treatment options. The rumble of the proton beam machine. The 10-month fog of chemotherapy. The black hole of isolation and lost independence. The constant ringing of uncertainty with every decision I would make as I planned for my future. As I left for Indonesia, I felt all the loss I had kept suppressed.

Yet even with all that loss, these past two years have in many ways been a true blessing. In a peculiar paradox, coming face to face with my own mortality has taught me how I want to live. I was provided the rare gift to be truly present in my life. To be present with my loved ones, friends, and everyone I care deeply about. To develop new friendships and relationships with some incredible people I would not have otherwise met.

Just a week after finding out about my recurrence, a fellow Oligo tumor survivor wrote to me, “We are blessed, fortunate souls; our tumors invited us to open up and see the gifts we already are living…and then some.” These past two years I have been incredibly lucky to witness these “gifts” – my family and friends – all of whom reached out to support me when I needed them the most. To be authentic and vulnerable to the people I love, and have that returned in kind, is an indescribable feeling that has become core to how I wish to interact with those around me.

It was also the simple gifts that warmed my heart: family dinners, waking up to the smell of freshly cooked French Toast, engaging in insightful conversations and joking with friends long after paying the bill, seeing extended family, being home for important events in my brother’s and sister’s lives, and simply embracing the moment with the people I was with.

When I left for Indonesia overcome with a rush of emotions, I realized that I was feeling immense gratitude for all the people in my life. It is no exaggeration that I would not be where I am today if it was not for every single person who went out of their way to accompany me along my journey. From finishing the basement of the new house so I had a place of my own, endless rides to appointments, to messages of support along the way, every act has helped me garner the strength to keep pressing forward. You created a place of comfort and safety during a period in my life of immense worry and unease.

Going back to Indonesia meant leaving behind that comfort and safety, and I felt scared to take that leap. The night before my flight I received an email from First Descents, the young adult cancer outdoors program I participated in this past summer. The email said, “Do something that challenges you, pushes you out of your comfort zone, and whatever it is, something that reminds you of how good life can be.” To live life to the fullest means to do what is uncomfortable. To push yourself beyond what you think is possible and take risks. For me, moving back to Indonesia is exactly that. It is an opportunity for me to reconnect with the parts of myself that I left behind in 2014 through the lens of the new person I have become since my recurrence.

Looking back on my journey with cancer, I realize that the comfort and security I felt during my treatment and recovery wasn’t a temporary chapter of my life, but has always been there and will continue to be there. I am incredibly grateful to know that there are so many people in my life that I can lean on for support in times of need, and I hope you know that I will always be there to support you as well.

Friedrich Nietzsche said, “To live is to suffer, to survive is to find meaning in the suffering.” In my search for meaning throughout my cancer journey, I have discovered that what matters to me most in life is to be present with the people I share my life with. No matter where I am in the world, no matter where my journey leads me, I can be content in knowing I have the love and support of so many. For that I am incredibly grateful beyond anything I can put into words.

So, in short, thank you!

ACT NOW – Support the Affordable Care Act

It is no understatement to say that the Affordable Care Act (ACA) helped save my life. Since I was diagnosed with brain cancer at the age of 12, I have been an insurance liability. Living with cancer for more than half my life, I clearly fall into the category of someone with a “pre-existing condition.” This was not a problem throughout my childhood since I was lucky enough to have my parent’s insurance to pay for endless doctor’s appointments, scans, and rehab.

What would have happened though during my recurrence in 2014 without the ACA? When I found out that my tumor had grown back, I needed advanced scans and treatments to halt any further growth. Proton beam radiation alone cost more than $200,000, but since I was still under 26, I could afford these treatments through my parent’s health insurance. Even with insurance, I received monthly medical bills ranging from a few hundred to thousands of dollars. I am privileged to come from a family who can support me through one of the most difficult periods of my life. Without the ACA; however, I’m not sure if we would have been able to withstand the astronomical costs of my life-saving treatments.

With a Trump administration and Republican-controlled Congress, countless people’s insurance, myself included, is now under threat. In less than a year, I turn 26 and will need to buy my own insurance. Unfortunately, given the nature of my cancer, it is more a question of “when” rather than “if” my tumor will start to grow again. Without the ACA, when that time comes, I fear whether I will be able to afford what is needed to keep me alive.

I am just one of many. Thousands of cancer patients are now faced with similar fears about their future. Repealing the Affordable Care Act will put millions of Americans in a position where sudden illness becomes the difference between putting food on the table and facing bankruptcy.

I know there are a lot of problems with our current insurance system. My family feels those problems every time I receive a medical bill. Now is not the time though to completely undo the good that the ACA has achieved. Rather, let’s work to fix what is broken, and keep what works.

I and thousands of other cancer survivors live every day with uncertainty. That doubt should not include whether we will be able to access affordable healthcare when we need it most.

 

Please support the Affordable Care Act (Obamacare) by calling into Paul Ryan’s phone poll:

Paul Ryan is conducting a phone poll on the ACA (Obamacare), hoping to hear overwhelming popular opposition to it. If you would like to express your support for the Affordable Care Act,
1. Call 202-225-3031 (this is his main DC number)
2. Wait through 40 seconds of complete silence. Or sometimes longer. Don’t give up!
3. You will be prompted by the survey.
4. Press 2 to participate.
5. Press 1 to register your support for ACA after listening to the recording. It only takes about 2 minutes to make a difference!
6. If you want, you are then able to leave a voicemail for Paul Ryan

 

If we learned anything from this past election it’s that one call like this, one vote, should never be taken for granted. Also, if I can call from West Kalimantan, Indonesia, you can call too!

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

 

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!

Moving forward during treatment: the difficulties of finding an appropriate balance

The following post may seem rather all over the place since it was written while all of these thoughts were swirling around my head. I contemplated rewriting a more refined summary of what you’ll read below, but ultimately I decided that posting the raw version reveals more about what going through this experience is actually like. And that’s what this whole blog is supposed to be about…

It has been quite a while since my last update.  It’s not that my mind has stopped spinning with thoughts (…in fact I have a to-write checklist of over 10 different topics), but rather things in my life both medical and non-medical related have been hard to keep up with.  My last actual update was about 3 months ago.  A lot has happened since then including starting my oral chemotherapy, Temodar, cycles as well as several memorable brain tumor advocacy events I was a part of.  I’ll write about those events and more in a future post, but what has been on my mind lately is how to move forward during treatment and what “moving forward” really means.

To catch you up a bit, I started my first Temodar cycle on May 1st.  The cycles consist of taking a high dose of Temodar every night followed by a 23 day break before the next cycle (28 days total)…or at least that is the ideal scenario.  In fact, I have had to delay my treatment by at least a week every time due to my platelet count (the part of the blood that aids in clotting and stopping bleeding) dropping too low to start the next cycle.  I can tell you about all of the hiccups in my chemo treatments since starting, but that would both be too many platelet numbers to remember and not really the reason I’m back writing after a long hiatus.  Instead, telling you about the past month will epitomize my challenges with treatment as well as serve as a healthy dose of self-reflection on balance and identity…because you can never have too much self-reflection ;-).

……….

It is crazy to think that all of this extended chaos began over eight months ago.  Although I don’t know if the saying “time flies when you’re having fun” is apt in this case.  For seven months, my life was filled with testing, uncertainty, treatment decisions, second opinions, more decisions, radiation treatment, more waiting, and now chemotherapy.  Seven months of my life solely focused on dealing with this uninvited visitor in my brain (…well it better be just a visitor, and not the guy that stays too long at the party when all you really want is for everyone to go home so you can get some peace and quiet…but I digress).

About a month ago, I started a summer course at Harvard to fulfill requirements for medical school (…which I’ll talk about a bit later in this post).  Since November, it is the first time I am finally moving forward with something not related to cancer.  It is the first time that when someone asks me, “what do you do?”, I no longer have to go through the complexity of my medical situation, but rather I can finally tell people I am simply taking summer courses.

Before I started my class, the idea of moving forward into an identity beyond “cancer patient,” was exhilarating.  Although a bit nervous, I couldn’t wait to get started.  In mid-June, leading up to my classes, I started to feel more anxious, particularly about whether I could handle moving forward with classes in the face of continuing fatigue from my chemo treatments.  The fatigue has probably been one of the hardest side effects of my treatment, and likely a primary driver of many issues challenging my sense of self.  During the five days when I am on the chemo, I feel relatively okay despite pretty painful stomach cramps if I don’t eat enough.  Usually around the 3rd or 4th day, some fatigue will start to kick in, but it is actually the post-chemo fatigue over the subsequent weeks that has been the hardest to deal with.

Worried about my class approaching and my constant state of fatigue, I asked both my oncologist, Dr. Wen, and my primary care physician, Dr. Busch, what they thought could help.  I told them that I’ve heard the exercise spiel from countless people, but unfortunately my body is so tired that even stretching takes a lot of energy out of me.  Plus, when my platelets drop (…which is often), I’m not allowed to work out even if I had the energy to do so.  This inability to exercise, both a physical reality and emotional hurdle, is extremely frustrating and one of the greatest drivers of issues I am having with feeling like I am losing my sense of self.  While I was in Indonesia, I was living an active lifestyle (…scuba diving, swimming in the ocean, hiking around waterfalls, climbing volcanoes, and going to the gym at least three days a week).  I know how good it feels to be in shape.  Not just how it improves your body physically, but how it strengthens emotional resolve.

When I was diagnosed with my recurrence I had daydreams of using this fragility of life experience to get into the best shape possible, or at least remain active as a means to cope with my treatment.  In reality, I have so far gone to the gym a whole 2 times over the past 8 months.  I do try to get some exercise in during my daily routine (whether that involves taking the stairs rather than the elevator, or walking instead of taking a car or public transportation).  But overall, I feel weak.  I feel weak physically to a level like I’ve never experienced before since my surgery 11 years ago.  But I also feel incredibly frustrated and disheartened.  I know how helpful exercise would be towards improving how I feel during treatment, but I can’t seem to get my body to do it.  This dilemma of knowing what would be best for me while being unable to actually accomplish it has been constantly tugging at issues of my sense of self.

To try to manage the fatigue, my doctors suggested Nuvigil, a wakefulness medication (…or basically a prescription upper).  After some wrangling with the insurance company, I was able to get the medication.  A week before my classes were to begin, I started a test run, taking one pill (150mg) a day.  If my energy was originally a 2 or 3, the Nuvigil “turned it up to eleven” (…for those pop-culture aficionados).  I felt immensely better, but now I had the problem of having too much energy.  I would at times feel “buzzed,” and I would either go from having too much focus (where 3 hours would fly by in a second), or feeling like the song, “flight of the bumblebee,” was playing in my head.  After some consultations with my doctor, we decided to cut the dose in half, and use it on an as needed basis.  Once we made that change, I felt great!  I felt like myself again, able to go play tennis, wanting to go for bike rides, having energy to go hangout with family and friends.  It was like night and day compared to my extended fatigue, and brought a lot of reassurance as I was about to begin my classes.

The first two weeks of my class started great energy-wise, but my expectation that this was going to be the moment I finally started to feel like I was moving forward failed to come to fruition.  I was able to keep up in the accelerated lectures and even enjoyed the material we were learning, but the disappointing feelings I was having were less about the class, and more about feeling like I was departing from my core values that have kept me grounded over the past 8 months.  This may seem a bit confusing and convoluted, so let me try to explain…  From my experiences with cancer, I have developed a deep appreciation for living in the present, and valuing what I consider to be the most important parts of my life, my family and friends.  However, during the first couple weeks of class, my entire time was spent working.  This was not much different from my days in college, or even at times my work in Indonesia.  In fact, the first two weeks were as if I was returning to some form of normalcy, one that felt quite similar to my life before my recurrence.  This normalcy though conflicted with values that have now become a more important part of my life since my diagnosis, in particular, living in the moment.  The tension between my present circumstance and values translated into a fear of losing myself to the cycle of everyday tasks and forgetting the values I had fostered since my recurrence.  I was afraid that this would develop into a pattern where this “new normal” didn’t quite fit with how I actually wanted to move forward during and post-treatment.

It sounds kind of drastic.  Two weeks into a class and I was already thinking about how it was creating a lifestyle that conflicts with my values, but as many of you know…that is the unfortunate way in which my brain works and thinks through situations.  Rest assured, I have not stopped taking the class. Rather, I think it has made me deal with an important question: How do I move forward in a way that balances my goals without sacrificing what keeps me feeling whole?  Upon reflecting back on those two weeks (…and keep in mind those two weeks were not too long ago), I think what created so much dissonance was the shock of reality not meeting my expectations.  I had thought that starting classes and “moving forward” would be freeing as if I would finally be released from the shackles of consistently focusing on my treatment, but it turns out that the process of moving forward came with its own restraints.  Don’t get me wrong, I’m enjoying my class, but I’m not so keen on the lifestyle it has boxed me into…and that has less to do with the class, and more to do with how I am balancing my time.

The concept of time changes when faced with cancer.  It becomes more tangible…more valuable.  I think this perspective on time is both a blessing and a curse.  It helps me appreciate the present, but also introduces a fear of losing time.  And that’s where I think my fear over the first two weeks of my course evolved from.  Before starting the class, I spent my free time with family and friends, reading books, writing, and appreciating what was around me.  During the start of the class though, an entire day would go by, constantly working, always left with a perpetual “to-do list”.  At the end of those days I would have a horrible sinking feeling as if I wasted the day…my time…time that I could have spent doing something that I would find more fulfilling.  I know we can’t all realistically spend every moment in the most ideal way, but when living through the uncertainty of cancer, where the value of your time remains uncertain because you don’t really know how much you actually have, it can be difficult to reconcile.  But what I think is important, and what I am starting to understand, is that it is not always necessarily the activity that determines whether it was worth your time but rather the perspective in which you approach the activity.  I was going to save the following quote for another post about my plans for future education, but as most of my blog posts go, I did not expect this much of a tangent.

Mahatma Gandhi once said, “Live as if you were to die tomorrow. Learn as if you were to live forever.”  This quote has helped keep me grounded as I move forward with my goals to apply to medical school.  Yes…you heard that right…medical school.  This post isn’t really the right place to go in depth as to why I’ve made this decision, but it reveals the source of a lot of the tension I’ve been feeling.  For me, becoming a physician isn’t about the “What” (…that goal at the end, or the doors it will open down the road).  Rather, it is about the “How” (…the way in which I want to work day to day, how I want to interact with the world, and how I want to harness empathy to connect and heal).  This creates quite a dilemma though.  In fact it is a bit oxymoronic.  My values I have gained through my experiences, (particularly wanting to focus on what I will enjoy in the present rather than ambitions down the road), have led me to a path that is traditionally very future-oriented.  So when I am sitting in my rented dorm room spending the entire day studying for physics…a fear of losing time…a fear of losing what I value as part of my self-identity grows.  But as I am starting to learn, it is about perspective.  I know in my heart that the path I am on has evolved from what I value in life and how I hope to impact the world, so instead of the physics problem-set being a waste of time, it is in fact a stepping stone along the path to follow my heart.  The dichotomy of Ghandi’s quote is what I believe is the answer towards moving forward in a way that balances my values and goals.  Living in the present (…or “like you were to die tomorrow”) does not necessarily mean everyday doing grandiose activities (like scuba diving along coral reefs or climbing up volcanoes).  Rather, it can mean taking a step back from time to time and calling your family, getting a bite to eat with a friend, or simply stopping to let in your surroundings.  As Ghandi eloquently put, we can both learn and live fully without having to sacrifice one for the other.  It just requires looking at it with a certain perspective.

After the two-week mark, I started getting a handle on how to balance my physics course with how I wanted to be moving forward during treatment, however, my schedule became a lot busier in July.  Over the past few months I have been fortunate to talk with several doctors and researchers working at the intersection of environmental health and public health.  This has led to a research opportunity with a professor at the Harvard School of Public Health to investigate the relationship between coastal management and nutritional health of populations throughout Indonesia.  The professor graciously offered for me to sit in on a course he was teaching this summer about analyzing nutritional health data on a country-level scale so that I could gain the skills I needed for the research project.  I immediately said yes to this opportunity, unaware of how my body was going to react to the chemotherapy.

Once the course began, my schedule became a 5-day a week affair.  After everything you have read so far, you may think I must have been crazy to do this, but I had no idea how I would feel during this period.  When I was making plans for my summer, I wasn’t going to let the uncertainty of my treatment paralyze me from moving forward.  So I went into the summer with a busy schedule, but one that I under normal circumstances could handle.

Unfortunately, as I began the public health course, I started to not feel well.  During my chemo cycles, I get my blood checked every 3rd week to get a baseline level.  I then get my blood tested again on the 4th week when I meet with my Oncologist, who determines based on the tests what the next dosage should be. On the last week of June, my platelets were at 105, a perfectly safe level, but just teetering above 100 (…the cutoff for starting the next chemo cycle).  The following week, I met with my oncologist.  The appointment was a mixed bag of news.  There was some really great news (…which I’ll share in my next blog post), but there was also a lot of disheartening parts to the day.  My platelets dropped to 57, my weight had dropped to 140 pounds (…I was 160 when I left Indonesia), and due to my seizures several months ago, my doctor felt that I should not apply to any ambulance jobs (…after I had spent a good amount of time renewing my EMT license).  Now let me parse this out a bit because I haven’t really talked about some of these issues yet in my previous posts.

My weight has been steadily decreasing throughout treatment, to the point where at times I crudely joke that I feel like I’m becoming translucent.  This is due to a combination of factors, but ever since I started treatment, I haven’t had much of an appetite.  It’s not that I don’t get hungry, but when I eat it is usually because I know I need to eat rather than because I actually want to eat.  In fact, I can’t really remember the last time I had a craving for something.  I was told that the chemo could change my taste for food and affect my appetite, but I did not expect it to be this much of a difference.  When I eat, I can usually eat a full meal, but it never seems to be enough to keep up with the weight loss.  Part of the decreasing weight I think is also related to losing a lot of muscle mass since starting treatment.  All of this combined has made me rather self-conscious as well as perpetuated my feelings of being weak and losing my sense of self.  I know that eating and exercise are crucial towards my physical and mental health, but as treatment continues it has been hard to push against these challenges.

The driving issue that came up during the appointment brought up a lot of past frustration.  My last seizure was February 11th, 2015, just before I started my proton radiation treatments.  The law in Massachusetts says if you have had a seizure, you have to wait 6 months to be able to drive.  This law though is incredibly general (…as are most rules related to seizures, but I won’t go off on that tangent).  The law assumes the worst, a grand mal seizure, which is when you lose full control of your body and become unconscious. I’ve never had that type of seizure, instead, all of my seizures have been focused on my right side while I’ve been fully conscious.  In fact, during the last seizure on February 11th, I kept eating dinner with my friend using my left hand while my right arm continued to shake (…more as a crude joke and not because I was actually that hungry).  I completely understand the rationale behind these driving rules, and also my doctor’s hesitation in providing exceptions to this rule.  I understand that focal seizures can develop into grand mal seizures at any time.  That doesn’t detract though from the frustration I feel, particularly because for me, this has been going on for such a long time.  Obviously I couldn’t drive when I first had my surgery when I was 12, but over the past 11 years I have constantly had to face restrictions related to my seizure history or physical disabilities.  Hearing that my doctor wanted me to hold off on applying to ambulance jobs for a while to be on the safe side just added to the ongoing history of restrictions.

That appointment was a stark reminder of my medical situation.  Starting classes this summer had offered a distraction from all of the medical issues going on in my life.  I created expectations and a vision in my head that didn’t include constantly having to focus on treatment.  However, like a shackle, the medical bracelets I receive at every appointment reminded me that while in some ways I am moving forward, in many ways I remain chained to my current medical situation.

My platelets dropping perpetuated these feelings, particularly because it coincided with the start of the public health course.  Throughout the week, I had to keep going in for blood tests to make sure my platelets did not drop to an unsafe level.  My platelets dropped to 52, still safe, but closing in on the range where you need to start considering a transfusion (usually 10-20).  I wasn’t really worried about the platelets as I knew this was a symptom of the chemo, but the constant blood tests and scheduling potential transfusions served as a perpetual reminder of my medical situation.

With my platelets dropping, I started to feel fatigued.  Even when I took the Nuvigil, I would crash for 3 or 4 hours every afternoon.  This was incredibly frustrating because it made balancing everything I was doing even more difficult.  In addition, it perpetuated my eating and exercise issues that I discussed previously.

The fatigue has also led to feeling disconnected at times since I’ve often had to cancel plans with friends because I simply feel too tired to go out. I thought that I could move forward with my classes and social life in a way where my medical treatment was a side-note to my everyday experiences, but it turns out I have underestimated how the treatment would make me feel.  When I introduce myself to other people in the graduate dorm I’m currently living in, I tell them I’m a summer school student.  I thought that being able to say that without having to mention my medical situation would be liberating, but it hasn’t.  And that’s because yes, I am now a summer school student, but I am also undergoing cancer treatment, which is significantly impacting my day to day being and interactions with people.

If you’ve made it this far…wow I’m impressed! This may be one the longest and most tangential posts I have written. It reflects though the tensions I have been feeling in multiple areas of my life over the past month. A lot of these emotions are still raw and developing. Like a few posts I have written before, I have gone back and forth on whether or not I wanted to make this public. In some ways it was a means for me to release the “pressure release valve” and put all of my thoughts onto paper, so I thought perhaps I should keep this one to myself and write something more “refined”. But I think that would be a disservice to me and those who follow this blog. One of the greatest lessons from my journey has been to embrace vulnerability as it often leads to recognizing commonality in experiences. This blog is supposed to be about the journey of living with brain cancer, and the emotions I have described above are a real part of that journey. Some areas are specific to me, but I think we all (whether dealing with cancer or not), face some similar issues.

Today I begin my next chemo cycle. While I’m obviously not looking forward to the cycle of fatigue repeating all over again, I feel a bit more comfort in having a better sense of how to move forward in a way that balances my treatment. Up until about a week ago, I was hitting a breaking point, having pulled myself in so many directions while simultaneously feeling unwell from the treatment. In some ways I needed this breaking point…the bubble of stress and fatigue to pop…so that I could take a step back (with clarity) to evaluate what wasn’t working and how I could move forward with a more balanced approach.

And when it comes down to it, the difficulties I have been having this past month all relate to issues of finding balance in life. A few months ago when I first put together my schedule for the summer, I made it with a clear intention to not let the uncertainty of my circumstance paralyze me from moving forward. However, I also recognized that I may not feel 100% during my treatment, and if that was the case, I would have to scale back. I think a lot of my emotional distress this past month developed from forgetting this conditional agreement I made with myself. From the moment I started the physics course, things started to feel like normal again, a feeling I had not had for over 8 months. So when I had my medical appointments, when my platelets dropped, and when my fatigue came back, it was a shock to my system. A shock and frustration that I wasn’t able to move forward in the way that I expected. But what I have learned is that this is okay, and really what this whole journey is about. It’s a process…continually moving forward with bumps in the road…changing over time. Some days are going to be good, and other days (…or periods of time…) may feel like nothing is going right. I have found that it is important to be accepting of this uncontrollable nature of my situation, and be gentle with myself when things are not going as expected.

Finding a balance is a perpetually evolving process. Right now, it means making sure that no matter what I am doing, I have the time and energy to do what is best for my health during treatment, in particular making sure I am eating enough, getting a good amount of sleep, and exercising as much as I can. When my treatment is over, I’ll have to renegotiate what the appropriate balance is, which will involve a lot of self-reflection about my evolving identity and what makes me feel whole. What is important to remember when going through life is that no matter how unbalanced things may feel, we always have the power within ourselves to make a change.

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.”