Gratitude

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

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!

Radiation Complete…Gratitude and Next Steps

Everyone has been asking me how does it feel to be done with radiation…Are you excited to be done? I don’t really know how to answer. It’s strange. I’m finishing the first major step of my treatment, and after 6 weeks of going in for radiation 5 days a week, I can finally move on to a different routine. Part of me thinks I should feel like this is a momentous occasion…a milestone reached. But I don’t feel that way. I’m not sure if it is the fatigue from the radiation or that the past month and a half feels like it has only been a few days, but the ending of my proton treatment just feels matter of fact…the next step along this roller coaster of a journey.

That’s what I wrote last weekend before my final treatment…but despite those lingering feelings, after stepping off of the proton machine yesterday, I celebrated! Cancer journeys can be long. From spending half my life living with cancer, I have learned it is important to celebrate every milestone no matter how small or big it may feel. I have learned it is important to appreciate these moments, and recognize the privilege, effort, and support that is involved with getting to these milestones. That is why after my last proton treatment I was filled with mixed emotions: a lot of fatigue, joy, anxiety over what’s next…but above all else, a huge sense of gratitude.

I feel immense gratitude to everyone who has made these past 6 weeks go by flawlessly. First, I have to thank my family for continuously supporting me. To my Dad for helping arrange the apartment in Cambridge that made the logistics for getting to my treatments incredibly easy…saving me a lot of much needed energy; To my Mom for the delicious and constant supply of food to meet my non-stop “grazing” chemo-radiation diet as well as emotional support along the way; To my brother and sister for always being there to chat with, hang out, and lean on; To my extended family for their continuous support, food, and chocolate; And to all of my friends who have helped me pass the time with joy and humor. There are too many people to thank, but if you are reading this, please know how appreciative I am for all of your support.

I feel tremendous gratitude for the entire radiation oncology team at Mass General who made this treatment possible. The amount of people and work involved with my proton treatments is truly mind-blowing. From my incredible radiation oncologist, nurses, and techs, to people I never even met (…including the physicists, dosimeters, and many others). In particular, I want to thank the staff at the proton center. Paul and Elaine for their constant kindness at the front desk even in the midst of a tornado of phone calls and organizing as well as Maryellen, my nurse, who always took the time while passing through the waiting room to check on how i was doing, reassure me that my blood counts were at normal levels, and never stopped having a smile on her face.

Finally, to my proton technician team: Katie, Scott, Gary, and Hui! Not only are they amazing at their jobs, but despite the long and stressful days, they always approached my treatments with incredible kindness and humor. They treated me like a friend in a setting where it is very easy to become just another patient number. Whether it was fights over music choices from Gary’s rock, Scott’s EDM, and Katie’s Beyonce, to Katie discovering Narwhals were a real animal from a sprint commercial song, they all went above and beyond to make the treatments go by easier while providing extremely high-quality care and concern.

Throughout all of my medical experiences over the past 11 years living with cancer, I have learned it is the people you interact with everyday during treatments who make all the difference. It is very easy for cancer treatment to become like a factory assembly line. The past 6 weeks could have been a monotonous routine of stressful treatments, but it was the staff I interacted with everyday who made all the difference. Everyone at the proton center were not only amazing at their jobs, but they approached it with immense kindness and humor that made the entire process go by much easier…and for that I am truly thankful. The past 6 weeks of radiation was only the first step, but it was an important step during my long journey of kicking this cancer’s butt.

Next Steps:

After finishing my radiation treatments I had my oncology appointment at Dana Farber. The plan is to wait a month to have my next MRI. During the next month I will stop all of my treatments to allow my body to recover from both the chemo and radiation. The fatigue from the proton therapy can increase after the treatment over the next several weeks. For younger people the fatigue usually dissipates after a few weeks, and then can oddly reemerge months later (…whereas in older patients, the fatigue can last for several months post-treatment). The proton treatments can also cause increased brain swelling, which is why I will get the MRI in a month. I am also stopping the chemo because the doctors have found that continuous Temodar treatment after 42 days could lead to increased toxicity and lower blood counts (a.k.a. it can hurt my immune system).

Once I get my MRI in a month, I will begin the longer-term oral chemotherapy treatments. This will consist of 5 day periods taking the Temodar (…with 23 days in-between) at double my previous dose for at least 6 months. The amount of time I will be on the Temodar will depend on how my body reacts to it. I will get frequent MRIs to see if the treatment causes the tumor to shrink at all. In addition, I will get blood drawn every week to make sure that my platelet levels are at a healthy number. If my body can maintain healthy blood levels, and the doctors see positive results in my MRI scans, then I may continue the chemo treatment for up to 12 months. However, if the toxicity levels build up too much, we will cut off the chemo at a certain point after 6 months. It will all depend on how I am doing week by week.

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In the meantime though, I will enjoy the next month being treatment-free and hopefully gain some of my energy back as the weather starts to warm up! I am incredibly grateful for all of the support that I have received. I am blessed with immense privilege both in my medical care and all of the support I have around me…please know I do not take any of this for granted, and I am incredibly grateful.

Some of you may know that in my long periods of fatigue, I spent many hours curled up on the couch watching West Wing on Netflix. Over the past 6 weeks I watched the entire series from start to finish…so much so that some days (particularly when I was pretty out of it) I would mix up real news for “West Wing” news. (As a tangent) Given the amount of episodes in the series, I think West Wing is one of the best binge-watching shows out there, and I’m fairly confident that if it was required training material for political office, our government would function a lot better. The reason I bring up West Wing though is that in the final scene (…which I watched the night before my last treatment), Jed Bartlet (the retiring president) gazes out the window of Air Force One, and is asked what he is thinking about. He responds… “Tomorrow.” As I write this, about to pack up my things and head back to Concord after 6 weeks of intensive radiation, it is nice to be able to think about tomorrow and all of the possibilities it holds…and for that, I am again, truly grateful.

Here are some photos from the final day of treatment:

My awesome team of techs (a.k.a. Team Narwhal!):

Graduating with my diploma from the MGH Department of Radiation Oncology (…it will go right next to my college diploma):

And finally, nothing like a chocolate trio dessert to wrap up the night…because as my sister knows: “Chocolate doesn’t ask silly questions, chocolate understands.”:

Also, here’s the video of my epic-fail while trying to ring the “end of treatment” victory bell. Who knew you were supposed to ring it perpendicular to the hinge? I thought I was going to break it!: LINK