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!

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!