I never thought I would make it to my 30th birthday, but here I am! I don’t mean for this to be a grandiose statement, it’s simply fact. Over the past 18 years since I was diagnosed at the age of 12, I have gone through my first diagnosis followed by surgery, months in the hospital relearning how to walk and drink a glass of water, and years of physical therapy; my first recurrence, followed by six weeks of radiation and nine months of chemotherapy; and my second recurrence, followed by an awake brain surgery, a failed experimental targeted molecular therapy, radiation, and a combination of immunotherapy and targeted therapy that I continue to this very day.
And now a possible third recurrence…
As I enter my 30s today, I traverse this milestone with the uncertainty that my tumor may be growing. A scan in June showed a spot that lit up on the contrast images (i.e. blood flow in an area that wasn’t there before). Now this could be one of two things: Either the tumor has grown and recruited blood vessels to support itself, or there is some vascular damage from an accumulation of my past radiation treatments. It has been a watch and see dilemma with a scan in July that showed no change, and now a scan in two weeks to get a better sense of what is going on.
But this post is not about a possible recurrence nor is it about the uncertainty looming in the background like Hurricane Henri about to come to shore. Instead, this is a reflection on how in my 20s, I have been able to develop the capacity (through luck, privilege, and persistence), to keep moving forward into my 30s feeling light and free despite not knowing what is going on in my head. In fact, I was born thirty years ago during New England’s last hurricane, so I already have a leg up on how to weather a storm. 😉
When my doctor, usually calm and reassuring, told me about the new spot on the scan with an affect that didn’t hide his sadness and disappointment, I cried. I think it may have been the first time I cried in front of him since he became my doctor during my first recurrence in 2014. I carried this sadness with me during the car ride with my mom to pick up some prescribed Chinese food to eat my emotions away. However, I noticed that among the hurricane force wind of thoughts swirling around in my head, a singular, bright realization peered through the stormy clouds.
“I didn’t want to change anything I was doing in my life…”
Going into an MRI scan is like approaching a fork in the road of my life’s trajectory. “Stable,” I’ll go one direction. “Unstable,” I’ll go the other way. Before finding out the results of the scan, I always had some idea of what I would do depending on the outcome. At first, I acted as a passive follower to the scan results, but over time I learned: “If I want to make a change depending on the results of my scan, why don’t I just make that change regardless?”
This has taught me not only the importance of my values, but also having the courage to follow my values.
As I sat in the car ordering soup dumplings, Chinese eggplant, and enough food to feed an army (for my mom and I), it was the first time I realized there was only one path I wanted to take: the one I was already on.
I had made it to a point in my life where the way I was living and what I was choosing to prioritize, aligned closely with what was most important to me. I now lived close to my family for the first time in my life on my own terms, which allowed me to see them on a regular basis rather than my past nomadic lifestyle of having a reunion every three to six months. I was now living my dream of being an uncle to the most adorable nephews. I was fostering a connection with an incredibly sweet, compassionate guy (…in fact, we were due to go camping for our fourth date after I found out the news of my scan. We went, and months later are now in a relationship.) I have purposely pursued my passion for sailing, and plan to complete my final certification during a weeklong liveaboard in the Caribbean this winter. And I have a job (and health insurance) where I get to work on topics that I’m passionate about and strive to make this world a bit better for my nephews to grow up in.
Everything I have done to be living the way I want to live my life today has been intentional… But it has been possible because I am lucky enough to have a tumor that is relatively slow growing, and I have the privilege and resources to change the direction of my life enough times, like a pendulum, to finally settle upon the “sweet spot” for where I am now.
I have been so fortunate to learn from such amazing people and experiences over the past decade:
Ten years ago this summer, I was in a kayak taking sediment samples off an oyster reef attempting to not fall overboard into the water. This was one of many experiences that fostered my love for the ocean and protecting the environment. This love brought me to Madagascar, sailing a tall ship across the Sargasso Sea, and after college moving to and living in Indonesia. It was in Indonesia where I accomplished some of my childhood dreams visiting islands and diving in locations that I had grown up reading about and watching on National Geographic. Throughout Southeast Asia, I started to understand just how big the world is, and my role as a global citizen. This time of my life was when I also began to break out of my shell as a member of the LGBTQ+ community and meet some of the most wonderful people from all corners of the world.
Seven years ago this summer, I had a seizure at a hostel in Singapore that eventually led to the diagnosis of my first recurrence when I returned home for Thanksgiving. Still in my early 20s, my identity was thrown into flux. I spent the subsequent two years fumbling with and learning about who I was during and after my treatments. There is no going back to an “old self” when faced with cancer. Now knowing I would always live with cancer, and there was no “if,” but “when” I would have a recurrence, I had to start the hard work of figuring out what I valued. Being with my family and meeting inspiring individuals as I entered the world of young adult cancer advocacy, got me through treatment and recovery.
Yet I still felt fragile like a piece of China being held together with masking tape. Thus, deciding to go back to Indonesia for another six months was perhaps one of the most important decisions I think I have ever made. The evening before my 12+ hour flight, I took a bite of my mom’s mac & cheese and cried because it had reminded me of the safety and comfort that home and my family had provided during a time when I truly needed it. There were several moments before, during, and after the flight when I wanted to turn around, but I pressed forward again living my dream, walking among the orangutans, learning about myself and others, and building friendships. But my lens through which I saw the world had changed. I was now acutely aware of my own medical experiences and now thrust into an environment full of disparities. Just after I had received what must have added up to over a million dollars’ worth of treatment, most of which I didn’t need to pay because I had insurance, I met a woman who couldn’t get treatment for her brain tumor because the flight to Jakarta was too expensive. It was from my house in Sukadana (…a four-hour boat ride, 2.5-hour plane ride, and another 12-hour plane ride from the United States), where I found out I got into medical school.
Four years ago this summer, I moved to Berkely, California to start medical and graduate school. I was blessed to be part of one of the most thoughtful and compassionate groups of people in my life. It was a moment that felt full of potential. An opportunity to transform my personal experiences into tangible service for others. But over the first nine months of school, not only did my father pass away from pancreatic cancer within three months of diagnosis, but I was yet again diagnosed with a recurrence. With no standard treatment options left, everything was uncertain. I missed my family but chose to remain in California for all my treatment, a decision made possible by my family, friends, community, and generous strangers. With cancer, we often focus solely on treatment for the physical self, but I have learned that treatments for the emotional self is just as, and sometimes more, important. Being in California, cradled by such a generous, loving community, was like a lighthouse guiding me through the unknowns of my life trajectory. It was the closest I had come to facing my mortality. Rather than withdraw, the people who were part of my life helped me, and encouraged me, to grow. To explore and follow my values.
In California I met my first love. I made life-long friendships. I explored some of the most beautiful places. I gained a mentor who cared first and fore-most about where my heart was pointing me. I graduated with a master’s degree made possible with the backing and support of my school who provided a platform for me to take care of my health, while delving into a thesis that was meaningful, personal, and transformational. And it was in California where I made the difficult decision to stop medical school so I could be closer to my family and foster better balance in my life.
A year and a half ago this summer, I moved back to Boston as the pandemic started. I continued my treatments. I got a job related to my passion for health equity and the environment. I became an uncle. I eventually got my own apartment, living in the city for the first time just a 15-minute walk from my brother, sister-in-law, and nephew. I completed my first two sailing certifications. And I met a wonderful guy who is now my boyfriend.
It has been quite a decade to say the least. None of the above fully captures the experiences I’ve had and more importantly the people who have made my life so full and shaped who I have become. The above also doesn’t capture the feelings, the emotions, that have helped me recognize and trust in what is most important to me. The warmth from family dinners at my mom’s house. The overwhelming presence I felt sailing on a tall ship nine years ago with nothing but stars in the sky and green bioluminescence painting the surface of the water.
So many moments, people, and experiences make us who we are. The question is: “will we listen to what we feel, and will we follow our heart?”
I don’t know what the next decade will bring. I don’t know if I’ll make it to 40 (…if I do, I’ll follow up with a sequel to this post). But I’m honestly not concerned with that. I’m not dwelling on what is to come in the next few weeks of my 30s because I think to myself: “If I’m already enjoying all that I’m doing right now, why not just focus on what’s right in front of me?”
This all may change with the shifting tides of life, but there is nothing I can do about that.
For now, I am simply grateful for every person I have met, and every moment I have experienced over the past 10 years because it has brought me to a point where I have been able to align my life with what I value most, and there is no better birthday gift than that.
With gratitude and love,