Cancer – Jeremy's Journey

Medical School Decision!

Two years ago today, I started my first day of chemotherapy. This morning at Dana Farber, I received news that my most recent MRI is stable, and I can now extend my scans to every 4-6 months! While the exam room for my visit was the same, it was surreal to think how much has evolved throughout this journey.

When I started chemo, I decided to apply to medical school. I had no idea what the future had in store for me, but I knew this was the path I wanted to pursue. I am now incredibly excited to announce that in just 6 weeks I will be moving out west to the Bay Area to join the U.C. Berkeley-UCSF Joint Medical Program!

Getting to this point was harder than anything I expected. From finishing prerequisites during treatment, taking the MCAT, to the year-long application process, I had no idea what I was getting myself into. Yet above all else, the greatest obstacle was my own internal struggle.

As I have written before, coming face to face with my own mortality provided clarity to what I truly value in life. For me, those values include family, friends, and using my time to live fully in the present. The medical school application process was often the antithesis of my values since medicine is inherently a future-oriented profession. Filled with uncertainty of my prognosis, time became more tangible. Taking that precious time to bury my head in studying or essay writing was difficult. Balancing my yearning to embrace the present while maintaining my goals for the future was at times almost impossible. There were several moments I wanted to quit, but I kept on. Not because of my own determination, but rather the support of my family, friends, and extended community.

I cannot express in words how thankful I am to everyone who has been a part of this journey. To my incredible medical team and Dana Farber’s Young Adult Program, you provided me the opportunity to progress from “cancer patient” to “incoming medical student” in just two short years. To my friends, and most importantly, my family…when the burden of uncertainty clouded my perspective, you provided clarity to why I chose this path. When I doubted myself, you gave me the strength to keep moving forward. For that, I am forever grateful.

Throughout this process I had to learn how to balance my present-oriented values with my future ambitions. I learned that in life we do not need to sacrifice one for the other. Goals are good. They get us out of bed, and even if we might not reach them, we can at least say we tried to achieve something greater than ourselves. These pursuits are only healthy; however, if they do not require us to give up our presence. To enjoy the people and places around us.

I feel incredibly lucky to be joining a medical program that not only enables, but also encourages me to find this crucial balance. During this decision-making process, the program’s values, approach to medicine, and pervasive sense of community felt like the best fit for me.

The Joint Medical Program (…or JMP for short), is a 5-year graduate/medical degree program rooted in collaborative inquiry and advocacy for social justice. For the first two and a half years, I will be based at U.C. Berkeley’s School of Public Health with 15 of my fellow classmates. Together, we will undertake a holistic approach to learning medicine through a 100% problem-based learning curriculum. Concurrently, I will pursue a masters in Health and Medical Sciences where I will have the opportunity to integrate my passion for the environment within my medical studies. Following that, I will transition to the clinical portion of my education at UCSF, and graduate in 2022 with my MD (…wow that’s a long ways away)!

Thank you to everyone who has been there for me along this journey. Please know how truly grateful I am. I look forward to continuing to share with you this new, exciting adventure as I transition from patient to practitioner.

Best,

Jeremy

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

Gratitude

On November 5^th, 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 5^th, 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 15^th 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.