Thank You Carolyn

I know it has been a while since my last post, but I wanted to take a moment to honor and remember my friend Carolyn. Carolyn and I met when I first started my treatment at Dana Farber. I remember being incredibly nervous going into my first young adult support group session. I was still coming to terms with the physical and emotional realities of my cancer recurrence, and the idea of being vulnerable with a complete group of strangers was terrifying. Sitting just a couple chairs from me was this confident, funny, vibrant woman who embraced vulnerability and created a space for others to feel safe sharing…Her name was Carolyn.

After the meeting she told me about Dana Farber’s young adult program (YAP). She was a fierce advocate for young adults with cancer. She would trek into Boston to staff the YAP table outside the hospital’s cafe. My first volunteer activity with YAP was helping Carolyn with the table. I was in awe as she passionately shared with patients, family members, healthcare workers, and complete strangers the resources available for young adults and why it was so important to have access to those resources. We later served on the patient advisory committee together, partnering to improve resources for young adults with cancer.

I felt so lucky to have met Carolyn at the early stages of my treatment. She served as an example for how I wanted to move forward with the news of my recurrence and in my life. Before her recurrence, Carolyn returned to nursing school because she wanted to give back and help people. She didn’t let the uncertainty of cancer get in the way of living. My experience with YAP was one of the core reasons I chose to enter medical school, and I would likely not have become so involved with YAP if it wasn’t for Carolyn.

To bring back one of my favorite quotes:

When you die, it does not mean that you lose to cancer. You beat cancer by how you live, why you live, and in the manner in which you live.” – Stuart Scott

Our community has lost yet another wonderful human being. Throughout my experience with cancer I have met so many incredible, inspiring people who have passed far too soon. In the face of mortality and life’s fragility, these people have taught me what it truly means to live.

In the face of uncertainty, Carolyn showed me how to live, why to live, and the manner in which to live. I cannot express how grateful I am to have known Carolyn.

My thoughts are with Carolyn, her family, friends, and all whose lives she touched.

For Carolyn, GO BRADY! 🙂

Advertisements

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

 

 

 

Past Inspiration – Sunrise over Mt. Merapi

Sunrise over Merapi - CROP

In the craziness of figuring out all of my medical treatments, I have forgotten to post Past Inspiration photos every Thursday.  This morning as the sun was rising on my way to another appointment, my mom and I passed a snowy field covered with a thick layer of fog.  It reminded me of my favorite sunrise in Indonesia.  The fog blanketed the forest below where the world’s largest Buddhist Temple, Borobudur, is located (…see if you can spot where it is).  On that day the sun rose perfectly at the peak of Mt. Merapi, an active volcano.  It was such a peaceful morning, and reminds me that in the midst of countless appointments and treatments, to stay calm and appreciate those brief moments of serenity.

Past Inspiration – Family photo at the waterfalls of central Bali

Family Bali WaterfallMy family and I at my favorite place in Bali.  As we begin this new year, what gives me strength and hope is my family.  They are the ones who continue to inspire me to push forward and accomplish my new year’s resolution – to open up to support and be vulnerable.

Past Inspiration – Boys of Inle Lake, Myanmar

Boys of Inle Lake, MyanmarIn my first post to my Past Inspiration photo series, I’ve chosen this photo of two boys passing by on their boat at Inle Lake in Myanmar during the end of my Luce scholarship year.  It reminds me to appreciate what I have, and to find joy everyday in life.  I hope you all have a happy holiday!