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

_MG_7149.jpg

 

 

 

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!

On Finding Meaning in my Cancer Journey

Throughout my radiation treatments I took some time to do some writing.  Now that I am starting to get some energy back and feel myself again, I wanted to post what I had written.  I wrote the following post about a month ago at the half-way point of my radiation treatments:

On New Year’s Day, long before I knew where my medical journey would lead me, I took a relaxing walk around Walden Pond with my sister.  Along the trail that surrounds the pond sits a pile of stones next to the spot where Henry David Thoreau’s house once stood.  On a wooden signboard one of Thoreau’s most famous quotes is written:  “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived.”  My sister and I took a few pictures of the picturesque lake as the sun began to set, and continued walking.

A few weeks later, I met with my Rabbi from when I was younger.  I can’t remember exactly, but it must have been at least 8 years since I had last seen him.  I grew up with this man, and it was an amazing flashback to my childhood listening to his sermons.  On the same day I had my brain surgery in 2004, my Rabbi had back surgery.  The nurses and doctors told him that he could not leave his bed, but he insisted to see me in the ICU.  It is one of the few moments in the ICU that I remember following my surgery.  As we sat together over coffee, we caught up on lost time, but also focused a lot on my present situation.  He encouraged me to take the time to find meaning in all of this…to find meaning in my diagnosis…my uncertain prognosis.

Over the past couple of months I have thought about my Rabbi’s question from time to time.  What meaning can I find from my cancer recurrence?  What meaning can be derived from myself and those around me having to live in a constant state of uncertainty?  I had already gone through this thought process before.  Over the many years following my original diagnosis and recovery, I had reflected back on my experience, finding a way to shape my hardships into a drive and ambition to make a lasting positive difference for others.  I had felt like I had been given a second chance at life, and I felt a responsibility to make the most out of it…to make the greatest impact possible.

This mindset helped me reconcile my struggles as well as push myself to accomplish things I would not have thought were possible back in 2004.  Looking back on my experience now, I am not sure if I would say I was given a second chance, or that the medical care I am receiving today is my third chance at life.  I do not think that my journey has been split up by these moments where I have been faced with these ultimatums in my life’s course…forks in the road to keep going or stop.  Rather, I see my struggle with cancer as a part of my life and who I am.  Cancer does not define me, but the experience…the journey…has shaped my character.

Already half-way through proton therapy, I have started to feel some sense of routine in my treatment.  I now have the luxury of time to begin thinking about my long-term plans.  What do I want to do during my year of chemo in Boston?  What do I want to do as a career? As these thoughts start spiraling, I get energized as if the sky is the limit.  But like a plane stalling in the sky, these highs have often resulted in frustration over the uncertainty in my long-term prognosis.  I have been blessed by the support of so many people, opportunities, and experiences.  All of which have helped me get to where I am today.  I continue to feel this urge…this responsibility…to take what has been given to me and direct that towards making a positive impact on others throughout my life.

As a 23 year old my mind is naturally thinking about graduate school and possible career tracks.  I think about what path will help me reach the impact I want to leave on this world.  As I think about these possibilities, I am quickly reminded by my medical situation…the uncertainty in my prognosis.  When this happens, I feel powerless…drowned by the weight of not knowing whether or not I can take all that has been offered to me, and transform it into something good for others.

One night, to get away from all of this stress, I turned on the film The Dead Poet’s Society (…I know, I couldn’t believe either that I hadn’t seen it until now).  On the front page of the Society’s book of poetry is Thoreau’s quote…the same one I saw on New Year’s Day.  Unexpectedly, I was overcome with emotion…tears falling down my face.  The mere observer would have thought I must really like the film…but it was more than that.  It made me think about Thoreau’s quote, particularly the words, “I wished to live deliberately.”  And that was it…the meaning I was trying to search for.

Since my original surgery, I have spent the past 11 years, and now the past few weeks, trying to create meaning from my journey with cancer.  True meaning though cannot be created at the end of the journey, but must be experienced along the way.  So what is the meaning I have been searching for in my experience with brain cancer?  To live deliberately…to live a life of vulnerability and authenticity.  People my age usually do not have to deal with the concept of their own mortality…that is often something encountered later in life.  What questions does facing your own mortality bring up?  For me, it has been how I want to live my life.  When the time comes however many years down the road when I meet my own mortality, I want to, as Thoreau said, know that I had lived.

Experiencing cancer, particularly the uncertainty it brings, has opened my eyes to how precious life is.  I still feel the same drive to turn my experience into something positive for others…but that is not the only meaning of my journey.  The meaning of my journey with brain cancer is in how I choose to live, and I choose to live deliberately, authentically…to be vulnerable.

‘Serendipity’…a story of friendship and support

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

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

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