Who I ride for…Please Support the 2016 Boston Brain Tumor Ride

Over 300 stories. 300 unique experiences. Patients, survivors, family, friends…everyone in some way had a connection to the devastation caused by brain tumors. To sit in a room with these 300 people was humbling because they represented a web of countless others whose lives have been impacted by a brain tumor.

Last week, I was in D.C. with these 300 individuals from across the United States for the National Brain Tumor Society’s Head to the Hill advocacy event. Together, we pushed Congress to support the brain tumor community. Over 700,000 Americans are living with a brain tumor. That number though does not fully capture the scale of this problem. If you are familiar with my story, you know that so many others, including my family and friends, have been impacted in some way by my cancer. This disease changes lives, both for patients and caregivers. If we are to truly give justice to the impacts left by brain tumors then we need to consider all the lives that are changed. The children who loose a parent too soon. The parents who have to do the unthinkable, and say goodbye to their children for the last time. The husbands and wives, whose partners depart far too early.

Since my recurrence I have had the fortune to meet some of the most incredible people, patients and caregivers, who are dealing with a brain tumor. One of these groups that I am incredibly proud and lucky to be a part of is the Massachusetts advocacy team for Head to the Hill. Advocating for the brain tumor community at the Capital is rewarding, but what I love most about going to D.C. every year for this event is meeting all of the other advocates. They are the epitome of perseverance, courage, hope, and love.

This year it was great to see old friends, and meet some amazing new people. It was surreal to think that it had only been a year since I was at the Capitol pushing through my first round of chemotherapy. A year ago, I could only focus on the present because the future was so uncertain, but last week I had the privilege to talk about and look towards my future. I am incredibly lucky my journey has turned out this way. Some people from our team last year were not able to make it to D.C. because their tumors had progressed. They are the reason I went to D.C. again for my second year, and why I continue to ride in the Boston Brain Tumor Ride.

They and their caregivers are my heroes. Despite overwhelming diagnoses, they have embraced life, supported others, and brought light and love to everyone around them. I have only met these families a handful of times in person, but they have taught me a lifetime of lessons. 

In just 5 days at the 2016 Boston Brain Tumor Ride, I will ride for them. I will ride for the mothers I have met who fight for their children even after they have passed. I will ride for the young adults I have met at Dana Farber who gracefully balance uncertainty and living. I will ride for the fathers and mothers, brothers and sisters, husbands and wives, boyfriends and girlfriends, children, and countless others whose lives have been impacted by a brain tumor. I ride because I can, and sadly many others cannot.

More than a year following my recurrence I am doing well not because of anything I have done, but simply because I am lucky. Lucky to have a tumor that is slow growing. Lucky to have access to the best medical care and resources available. And lucky to have the support of my family and friends. With this privilege, I have a responsibility to stand up for and support the brain tumor community. We are on the cusp of so many great discoveries in improved treatments, and perhaps someday a cure. But we won’t get there unless we all come together to take action. For all of those who are, and for all of those who will face a brain tumor diagnosis, please donate to the Boston Brain Tumor Ride.

Click HERE to join and/or donate to our team for the 2016 Boston Brain Tumor Ride

 

Why I Ride…Please join and support the 2016 Boston Brain Tumor Ride!

Click HERE to join my team for the 2016 Boston Brain Tumor Ride!

Yesterday I went to Dana Farber for my latest MRI scan.  During the weeks leading up to the scan I was incredibly nervous.  I have spent the past 3 months studying for the MCAT and preparing to apply for medical school.  I have started re-imagining my future after a year of only being able to focus on treatment.  As the scan approached, a whole array of scenarios played through my head.  What if the scan showed further growth?  Was all the time I have spent to regain my strength and continue forward with my life for naught?  Will I have to start treatment again?  There were no limits to where my imagination would take me because living with a giant question mark in your head naturally creates a lot of unknowns.  Over the past 3 months I have been working hard to get back on my feet.  Every now and then I would experience significant fatigue or long stretches of nauseating headaches.  I would think to myself, are these symptoms of the tumor in my head, or simply a cold?  So as I tried to lay still in the noisy cylinder of the MRI machine, all of these questions…these potential scenarios…continued to play out in my head.

I waited in the exam room for Dr. Wen with my mom, thinking that the longer we waited, the more time he was spending looking at the MRI scans, and surely that couldn’t be good.  I prepared myself for how I would react if we received bad news, but ten minutes later, Dr. Wen walked in, and said, “The scans look good!”  Suddenly I felt all of the weight I had built up fade away.  Dr. Wen showed us a comparison of the scans from yesterday and three months ago.  Not only has there been no further growth, but the tumor may have shrunk a little due to the lasting effects of the radiation treatment.  Oddly, this was not one of the scenarios I prepared for, so I sat there happily surprised and a little speechless.  Everything is stable, which is what we were hoping for!

I knew that it wasn’t healthy nor productive to let my mind drift into scenarios of what may happen every 3 months I get a scan.  I had to put some boundaries to my uncertainty in order to better manage my expectations.  I needed some more information.  To do this, I had to ask Dr. Wen a question I pretty much knew the answer to, but had put off asking until now.  This is what I asked him:  “Dr. Wen, I know there is no crystal ball, but given your experience is it fair to expect that the tumor can continue to remain dormant permanently, or is it likely it will come back again?”  Part of me expected Dr. Wen to pull the usual doctor trick of sidetracking away from a question like this, but instead he decided to answer me honestly (…one of the many reasons why I trust him and think he is an exceptional doctor).  He responded that more often than not, these types of tumors come back.  It wouldn’t be any time in the immediate future, but since there is no way to get rid of every cancer cell, at some point, those cells will start growing again.  There is no way though to know how long that will be.  He also stressed that there are many new treatments coming down the pipeline that will hopefully be ready to use by the time I would need it.

One of those treatments is already undergoing clinical trials, and targets IDH mutations (…which are commonly found in glioma brain tumors).  About a year ago, I had my original tumor tissue genetically sequenced as part of a larger research study at Dana Farber.  The researchers found that while I don’t have the IDH1 mutation, I do have a mutation for IDH2.  This type of mutation pattern is uncommon in gliomas (<2% of cases), but has been found more often in my class of tumor, oligodendrogliomas.  Despite having an incredibly rare tumor, the trials being conducted may at some point lead to a treatment for me.  It is this prospect of new treatments that gives me some reassurance to keep moving forward, and why funding and support for brain tumor research is so critical.

In the grand scheme of the brain tumor world, I am incredibly lucky.  I say this because although I will never be cancer free, I have time to wait for better treatments, and perhaps someday a cure.  Over the past year, I have met some amazing people (younger and older), who are going through their own experience with a brain tumor.  Some of these people are doing well like I am, while others are courageously working to keep their tumors under control (…to have as much time as possible).  Sadly, a few of the people I have met passed away.  One of those people was Nathan, a college student just a few years younger than me who was diagnosed right around the time I received news about my recurrence.  I never met Nathan, but we corresponded through messages back and forth, and his writing inspired me to keep pushing forward during a time when everything seemed pretty bleak.  I followed Nathan’s writing throughout his experience, and he continued to maintain a positive attitude even under the worst of circumstances.

The reality of knowing I will have to face this tumor again, but having no idea when, is pretty daunting.  I could let this uncertainty consume me and live under a state of anxiety every time I go in for my next scan.  However, it is people like Nathan who inspire me to push beyond the unknown, to choose to appreciate the time I have, the people around me, and live in the moment.  There is a quote I like, “To live is to suffer, to survive is to find some meaning in the suffering.” As I’ve said before, we all face challenges and uncertainty in our life.  Those challenges don’t define us.  What makes us who we are is how we respond to what life throws at us…what meaning we can derive from the vast array of suffering that naturally occurs throughout life.

As someone who has lived more years with a brain tumor than without, I believe one way for me to find some meaning in what I have been through is to use my experience to help others.  We live at an incredible time when medical breakthroughs for brain tumor treatments are just around the corner. It is these treatments that give me a sense of security to continue moving forward even when my destination is uncertain.  It is these treatments that have the potential to save so many lives during a time when brain tumors are one of the leading causes of cancer related deaths in children and young adults.  And it is these treatments that give people like me, and countless others throughout the world, a reason for hope.  These treatments will only be possible though if there is funding to support brain tumor research.

That is why I ask you to join me as a rider for the 2016 Boston Brain Tumor Ride on May 15th.  It is the people who have the most at stake (…patients, survivors, family, and friends) who need to lead the way to a world without brain tumors.  If that is a world you believe in, then please join Team Jeremy as a rider.  You can participate in Boston with us, or as a virtual rider from afar.  Last year we raised over $36,000 and while there are less than 2 months until ride day, I want to maintain a similar ambition.  If you can’t join as a rider, then I ask you to please donate to support the ride and brain tumor research.

When the day comes that I have to face my tumor again, I want to know that I did everything I could to create a better world where less people have to go through life living with a brain tumor.  Every dollar raised does not just give me hope for a better future, but provides hope for the hundreds of thousands of people around the world who are living with brain cancer.  Please join me, my family, and friends on Sunday, May 15th for the 2016 Boston Brain Tumor Ride.

Thank you,

Jeremy

Click HERE to join my team for the 2016 Boston Brain Tumor Ride!

Done with treatment, MRI is “stable”… so what’s next?

Today marks a year since I started writing this blog.  I made this blog with the intention of keeping everyone informed about my situation and hopefully give some insight into what it is like to go through this journey. While I haven’t kept up with writing as much as I hoped, I am happy I have created this platform to digest my thoughts and share them with others.

This past week I had my MRI and appointment with my oncologist, Dr. Wen.  It was my first appointment since finishing treatment last month.  The MRI showed that everything is “stable.”  This means that there has been no change in the tumor’s size, so we can now transition from treatment to monitoring every 3 months.

“Stable” is an odd and emotionally conflicting word.  It is not joyous like hearing the words “remission” or “cured,” but is more mundane…the status quo.  Yet in my situation, and often in the world of brain tumors, “stable” is the most I can hope for.  The past 8 months of chemotherapy was meant to stop any further growth of the tumor, and since my tumor is inoperable, keeping it dormant is the best case scenario.

This doesn’t mean that my MRI results are not worth being happy about.  Over the past year I have immersed myself within the brain tumor community, and sadly some of those people have recently passed away.  I recognize how lucky I am that my own circumstance is “stable,” and to not take that for granted.

I still have trouble though celebrating this moment.  Given the slow-growing nature of my tumor, we wouldn’t expect to see any changes (good or bad) for another year or two, so maybe it is that uncertainty that bothers me.  Perhaps the issue is that I know there will never truly be an end point to my journey where I can leave my cancer behind because the reality is that my brain cancer has turned into a lifelong illness…a chronic disease to be managed.  This idea of “living” with brain cancer is something I hope to write more about in the future as I am unsure what that truly means both in the short and long-term.

What I am incredibly happy about is finally being done with treatment.  After 6 weeks of a mix of proton radiation and chemo, followed by another 8 months of chemo, I am ready to regain control over my body and life.  The past year of treatment was a lot harder than I expected, particularly the fatigue and weakness I experienced.  I am looking forward to regaining my energy, and finally feeling like myself again.  To start building back my strength and live a typical 24-year old life.

To be honest though, I am a bit worried about making this transition.  Just a week after finishing my last cycle of chemo, I went abroad to Paris for the U.N. climate change negotiations.  While I have a lot to say about the negotiations (…that’s for a different blog post), the experience was rather eye-opening on a different level, particularly related to how starkly different my life has been over the past year.  It was the first time I was working a full schedule, and even the first time I went out at night dancing since I left Bali back in November, 2014.

In some ways over the past year, I have existed in a completely different world.  Now that I am finally able to step out of that world, I am feeling a bit culture shocked.  To be able to start focusing more on my future, to be able to start dating, to be able to get a job, to be able to go out at night, to be able to simply start working out again…those are just a few of the many things I look forward to.  Yet even with the excitement of those possibilities it is pretty overwhelming, particularly as it exists under the umbrella of uncertainty.

But I am ready to start picking up the pieces.  As I do this, I need to keep in mind that it will be an ongoing process.  Even though my treatment is over, my life won’t immediately return to the way it was before, nor do I want it to.  I have learned a lot over the past year (…too much to recount in this post), but one of the most important things I have taken from my experience is to embrace the moment I am in, and the people I am sharing it with.

So that is what I plan to do.  While the uncertainty remains, I have the opportunity now to start putting my life back together however I want to.  That is both exciting and incredibly nerve-wracking.  The “stable” MRI is more the end of the beginning rather than the end, but I’ll continue to move forward.  To move forward enjoying where I am even when it is often unclear where I am heading.

In the meantime, I want to thank everyone who has supported me from close or afar overt this past year.  There are too many people to name in this post, but please know how appreciative I am for all of the support I have received that has helped me get through this first major step in what will be a long journey.

 

A Year Post-Diagnosis: Reflecting on privilege, equity, and our common humanity

This week I finished my last round of chemotherapy for a recurrent, inoperable brain tumor.  It has been exactly a year since my doctor told me my cancer is back.  I have been trying to reflect on this past year, searching for the right words to encapsulate my experience.  What I keep coming back to though is a question that has weighed down on me since the beginning of my treatment, “Why me?”  Not questioning why I have been dealt this hand of living with brain cancer, but rather, why are the cards stacked in my favor?  Why have I been so privileged to receive some of the best medical care in the world?  Why, in the view of society, is my life valued more simply because of the circumstance in which I was born into?

This simple truth of privilege and circumstance burdens me, but is also one of the greatest lessons I can learn from my experience with cancer.  My story would be very different, perhaps shorter, if it was not for the many privileges I have benefited from.  Over the past year this privilege has taken many forms.  When I had a seizure in Singapore, instead of waiting in the overcrowded and understaffed public ER, I was able to get a transfer to the best private hospital simply because I could afford travel insurance.  Within weeks of receiving my diagnosis, I was meeting with some of the best doctors in the world because of my well-connected primary care doctor who I have access to through my mom’s job.  I was able to receive proton beam radiation, a $200,000 treatment, because I have access to my parent’s American private insurance.  Throughout the past year of treatment, I have had both housing and financial security, all while not being able to work, because I have loving family and friends with the means to support me.

I am not discounting the struggles my caregivers and I have had to endure over this past year.  In addition, I understand that many of my privileges stem from the hard work my parents have put in to be able to support me.  Nevertheless, I would be remiss to not recognize that the opportunities I have been provided are a result of the circumstance I was born into.  I have experienced the best of what medical care has to offer.  It is the type of care that all people should have access to, yet in reality, few ever receive.  During my journeys abroad in Indonesia and Madagascar, I have witnessed many inequities people face in regards to healthcare access.  My circumstance and the experiences of the stories I am about to share are polarized by an unjust divide of opportunity.  I do not bring up the following stories searching for sympathy towards the communities I have lived with because that can only go so far towards creating change.  Rather, I hope these accounts, in the context of my own story, can epitomize the gross injustices created under a status quo where healthcare is a privilege and not a right as well as encourage an outlook that recognizes our common humanity.

Before my recurrence, I lived in Bali, Indonesia, an island that has a stark poverty divide between the tourism areas busy with foreigners, and the rest of the island.  One night, while driving back home from an event in central Bali, I came across a crowd surrounding two men who just moments ago were thrown off their motorbike.  Using my EMT background and novice language skills, I attempted to help the men.  One of them had a clear deformity in his lower leg, a possible sign of a fracture.  I tried to explain that they needed to go to a hospital, but they replied they were farmers without insurance, so couldn’t afford a hospital bill.  Instead, they told me they would sleep on a bench at the side of the road overnight until the local free clinic opened.  On my drive back I thought to myself, what if I was in that accident?  I would be able to call a private ambulance and get treated immediately at one of the hospitals meant for foreigners.  I questioned, why in Bali and throughout the world do we have that juxtaposition of hospitals meant for foreigners, often better staffed and equipped, compared to those for locals?  I think back on the quick response I received when I had a seizure and wonder, what makes me any different from those farmers that provides me better access to medical care other than the fact that I was born in the United States with financial means?

In 2011, I worked on marine conservation projects in a remote fishing community of Southwest Madagascar, one of the poorest countries in the world.  On my time off, I provided English lessons for a couple teenage boys I had befriended.  One of the boys, just thirteen years old, came up to me knowing about my medical training, and showed me deep wounds in his leg from several cuts that had become infected.  I had a well-stocked first aid kit with antibacterial ointment and bandages, so I patched up his leg.  A week later, more kids with similar wounds came by my hut asking for Neosporin and a Band-Aid.  These were two simple medical products I completely took for granted, but were in high demand to keep their wounds clean.  I eventually ran out of supplies and had to turn the kids away.  My organization had originally instructed us all to not give out our own personal medical supplies, and I had chosen to do the opposite.  Part of me felt bad and just wanted to help.  The other part of me took great issue with the mentality of those instructions.  It is a mentality of cost effectiveness that pervades most of the western world’s development mindset.  It is based on the alleged idea of practicality, but inherently requires valuing people’s lives differently.  I can’t help but think to myself, what if I was one of those kids?  I was originally diagnosed with brain cancer at 12 years old.  My medical care was not determined by “cost effectiveness”, rather, over the past 12 years of having cancer, I have had hundreds of thousands of dollars in treatment and monitoring invested in me.  Imagine how much Neosporin and Band-Aids that could buy.  It makes me wonder again, what makes me any different from those kids other than the fact that I was born in the United States with financial means?

Every year, thousands of people die around the world from cancer simply because of an inability to detect it in time.  While helping assist a class at Harvard this past summer, a student from Indonesia told me about her father who was also diagnosed with a brain tumor.  He unfortunately passed away because they were not able to get access to an MRI or treatment center until it was too late.  Her father and I had a similar diagnosis, but two completely different fates.  What makes me any different from her father?  What “just” rationale, and I emphasize “just,” explains me being able to have a future to look towards simply because I had the means to get treatment?

Paul Farmer has said, “The idea that some lives matter less is the root of all that’s wrong with the world.”  In light of my experiences and the recent terror attacks sparking up around the world, I could not agree more with his statement.  This past year, cancer has stripped me down to my vulnerable core, forcing me to reach out for help in order to survive my diagnosis and keep pressing forward.  I have been incredibly fortunate that within the world’s mosaic of differentiating opportunity, I have been privileged to receive support with open arms.

Following the Paris attacks, I, like many others, have been appalled by some of the fear mongering reactions towards taking in Syrian refugees.  These people have been stripped down to only what they can carry on their backs, running from the same, if not more, persecution that has driven the Western world into fear.  How can we turn our backs on these people?  What if we were running for our lives and the lives of our family?  How would you react towards people turning their backs on you in the name of national security when your only crime was being born into conflict, having darker skin that decreases your worth in the eyes of the western, predominantly white, perception?

In two weeks I will be in Paris at the United Nations climate change negotiations (COP21) with a U.S. youth delegation from SustainUS.  In light of the recent attacks, some have questioned holding this negotiation, or at least civil society’s participation in it, but I am convinced that moving forward with calls for climate justice and sustainability in the negotiations is more pertinent now more than ever.  The endeavor to get nations to agree to a binding, ambitious climate treaty goes beyond details of parts per million or degrees Celsius.  Those numbers, such as a limit to 1.5oC increase in global temperatures, translates to very real impacts affecting communities around the world now and in the future.

Among the most vulnerable communities, climate change exacerbates issues of health and conflict.  The past few months brought some of the worst forest fires throughout Indonesia, likely one of the greatest environmental catastrophes of the 21st century.  These fires not only caused massive environmental destruction and release of carbon dioxide emissions, but have threatened the respiratory health of hundreds of thousands of people.  Throughout the Pacific Islands, and even in Alaska, communities are already being forced to leave their homes as the sea level rises.  Even the conflicts throughout the Middle East and Africa that have resulted in one of the most drastic refugee crises were intensified by climate change as severe droughts depleted resources, pushing rural populations into urban centers.  If we truly want to help alleviate the refugee crisis, we would be serious about dealing with climate change.

The root of problems related to healthcare equity, refugees, and climate change all stem from humanity’s greatest flaw:  our willingness to value some lives less than others.  The solution to all these issues are complex, but one simple step we can all take in the right direction is to search for a greater sense of empathy.  To ask ourselves, what if I was that kid with the infected wound, what if I was a refugee, what if I was forced to leave my home due to sea level rise?  It is important to ask ourselves this before we act because the only thing that separates reality from these hypothetical questions is the fact that we have been born into a circumstance of privilege.

Living with brain cancer has instilled in me a deep sense of empathy, but not everyone has to have a life threatening illness to gain a new perspective.  We all face struggles in our life, and it is important to not discount our own challenges because others may be going through worse.  We can use the difficult moments though to recognize our common humanity.  To see each other beyond the perceived divides of nationality, race, or religion.  To understand ourselves as part of a larger whole, a global citizenry, who all deserve an equal shot at a life filled with peace, health, and love.  As John Lennon wrote, “You may say I’m a dreamer, but I’m not the only one, I hope someday you’ll join us, and the world will be as one.”  I believe we can reach this vision.  I hope you do too.

Medical Update: Good News!

Scan days are always filled with a dose of anxiety.  I’ve had countless MRI scans over the past 11 years, and the angst has remained constant.  I don’t have any problem with the MRI itself…in fact I have no problem falling asleep in the machine as I match the rhythms of the magnetic pulses to songs in my head.  The moment I have the most trepidation is the few seconds right before the doctor tells me the results.  My heart speeds up a few notches, noticeably raising and lowering my chest.  Most times, calm returns when the doctor simply says, “the scan looks good,” or “we saw no change.”  A few times, as I have written about before, the doctor delivers some bad news.  In 2004, “we’ve found what looks to be a brain tumor”…in 2012, “there may be a slight enhancing abnormality, it’ll be safer to monitor it more frequently”…and this past November, “the tumor has grown back.”  These moments, merely a few seconds, feel like an eternity when I replay them in my mind.  I prepare myself for these moments by sorting through and accepting the potential worst-case scenarios.

Yesterday, when I went in for my MRI, I went through my same routine.  I fell asleep to the thumping of the MRI machine, grabbed some lunch, went to Dana Farber’s nuero-oncology waiting room, had my vitals taken, and then went into the exam room to wait for the doctor.  I sat in the exam room prepared for the various results I could receive from the MRI.  I went in knowing we were not going to expect to see any noticeable change in the size of the tumor.  Instead, this scan was focused on checking the degree of swelling as well as if the tumor had become more vascular (…meaning that it takes up blood, a sign of it evolving into a more aggressive form).  Debra, my nurse, was the first to come into the exam room.  My heart fluttered for a second, but when she told me they saw no swelling or vascular nature to the tumor, I relaxed a bit in my chair.  I was relieved…everything was going as expected…I had some good news to report.  What I didn’t expect nor prepare for was to hear more news about the MRI…more good news!

My nurse practitioner, Lisa, who fills in for Dr. Wen when he is not in town, came in next.  After repeating what Debra told me, she pulled up the scans on the computer, and said, “it looks like the tumor has shrunk a little!”  Thinking that I might have misheard her, I asked her to clarify what she meant.  I knew this was a potential possibility down the road, but didn’t imagine we would see any noticeable change this soon.  She told me she and the radiologist looked over the scans together, and both agreed there was a noticeable change.  I was still in disbelief.  I knew I was hearing fantastic news, but I was skeptical that it could be true.  After so much bad news over the past 6 months, I was completely unprepared for something good like this to happen.  I left the exam room a bit bewildered, deciding to be cautiously excited until I saw my radiation oncologist the next day at MGH, as if there must be some catch to what I had just heard.

Earlier today, I went into MGH for my appointment with Dr. Loeffler, my radiation oncologist.  My goal was to first and foremost confirm whether or not what I had been told the day before was true.  When I walked into the meeting room, Dr. Loeffler greeted me, saying, “congratulations! you were told the good news yesterday, right?”  I immediately asked him if he agreed with the scan results, knowing how finicky MRI interpretations can be.  He told me that the day before he had spent an hour pressing F5 to refresh his computer, waiting for the scan to show up.  When it didn’t, he went off to a meeting, but when he returned, he looked through the scan, and was shocked to see that the margins of the tumor had shrunk to a degree that it was visible with the naked eye.  He said that we were potentially hoping to see changes like this months if not a year down the road, but that it was surprising to see this amount of change so fast.  And with that, I felt an overwhelming sense of joy as it all began to set in.

So what does this all mean in the bigger picture?  Well, to start it is a clear sign that the proton treatment I went through, combined with the small doses of chemo had an effect on the tumor.  And that is important!  In my entire treatment plan, the radiation was the period I would receive the biggest bang for my buck in terms of treatment, and it looks like I received a big bang for my buck.  It doesn’t mean I’m “cured” or that the uncertainty of my entire situation has dissipated.  There is still tumor there, it can still keep growing, it is still going to be a long journey…but for the first time in 6 months, we are getting some control over this cancer, and that is definitely worth celebrating!

Next Steps

My treatment plan remains the same.  Over the past 3 weeks, my blood platelet count dropped pretty significantly and leveled off at 70.  The minimum most people want to be at is around 150.  For those who don’t know, platelets are blood cells that help stop bleeding.  Since mine were low, due to the lasting toxicity from my first round of chemo, I just had to be extra cautious around knives and making sure not to fall (a.k.a. no skydiving allowed).  I’ve also felt a bit drowsy as well, but luckily my platelets are on their way back up.  Once they get back up to 100, I can begin my long-term chemo treatments.

I will be taking the same oral chemotherapy, Temodar, that I took when doing proton therapy.  This time, however, I’ll be taking about double the dose for a period of 5 days, with 23 days off for recovery.  Depending on how I react to the treatment, we will continue these cycles for at least 6 months to potentially 1 year.  I may feel nauseous and get fatigued, but that will all depend on how my body reacts to the treatment.

The goal of the chemo is to keep attacking the tumor cells, and prevent any additional growth.  My doctors do not expect to see as much shrinking as we just saw from my radiation treatments, but I will get another MRI in 3 months, and if the scan comes back showing no growth, I’ll be happy!

It’s a long journey ahead, but as spring emerges and the flowers and trees begin to blossom, I can’t help but feel that things are looking bright.

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A beautiful spring day to bring in some good news!
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Some delicious french toast and a mimosa to celebrate the good news!

P.S.  HAPPY EARTH DAY!!!  How lovely it is to have such great news on one of my favorite days of the year!

Long-term thinking vs. focusing on the present…cancer as a young adult

Here is another post I wrote about a month ago while half-way through radiation treatment.  I didn’t want to make many changes to it after the fact, so I apologize if it comes off as a bit of rambling…just blame the fatigue  😉

Just a couple weeks after finding out about my recurrence, a friend of mine posted the following Steve Job’s quote on Facebook:  “You can’t connect the dots looking forward, you can only connect them looking backwards, so you have to trust that the dots will somehow connect in your future…because believing that the dots will connect down the road will give you the confidence to follow your heart even if it leads you off the well-worn path, and that will make all the difference.”

Having cancer at any age is a difficult reality, but having cancer as a young adult presents many unique challenges.  When I was originally diagnosed as a kid, I had my parents making the important decisions.  All I needed to focus on was recovering, getting healthy, and eventually returning to school.  Now as a young adult, cancer feels like a giant pause button on a life that was about to launch forward.

Just a few weeks before finding out about the new tumor growth in November, I was living independently in the beautiful country of Indonesia.  I enjoyed all facets of my present moment…my friends, the fascinating culture, the meaningful work…but like most young adults a couple years out of college, I constantly had thoughts about what’s next, what do I want to do with my life, where do I want to be 5, 10, 15 years down the road?

From my original journey with brain cancer, I understood the importance of living life to the fullest and enjoying the present, but as time went by, my ambition and drive to make a meaningful difference for others increased…and with that, so did my excitement to envision a potential path forward.  I think this is natural for most young adults.  We all have goals, both professional and personal.  There are issues I care deeply about, and I wanted to take the path towards the point where I could make a positive impact on those issues…that long-term point…close enough to visualize, but still distant enough where both drive and determination were needed to get there.

When I first found out about my brain cancer recurrence, that long-term point blurred away…somewhat able to visualize, but potentially unable to attain.  When that long-term point faded away, all that was left was the point right in front of me…the present moment.  It is not that my passions, dreams, and ambitions have disappeared; rather, the present moment has become so much more important.

Over the past decade, before my recurrence, I reflected extensively on my initial brain tumor diagnosis.  This process opened my eyes to the importance of the present, but also created a feeling of responsibility to make the most of my time.  While I further understood the meaning of “living life to the fullest,” I also felt a perpetual drive forward towards the future.  I was constantly pulled in two directions by this dichotomy between living in the present and moving towards the future.  What is different now in my current situation is that I am no longer simply reflecting on past experience, but rather, cancer is my present and future reality.

Just a week after finding out about my recurrence, I was corresponding via email with another Oligo tumor survivor.  In his email, one sentence in particular stayed with me:  “We are blessed, fortunate souls; our tumors invited us to open up and see the gifts we already are living…and then some.”  Over the past few months, among all of the hardships, this is probably one of the greatest silver linings I have experienced.  For the first time since probably my surgery in February, 2004, what is right in front of me…what I consider to be truly important in life…is clearer than ever.  When faced with my recurrence, I had nothing to do but focus on the present moment.  I finally had the time to appreciate the “gifts” in my life…my family and friends…the people who have and continue to be in my life.

For so long I was driven by this long-term, goal-oriented mindset that when I was briefly in the same physical place as my family and friends, my relationships remained on a mostly surface level.  This was not because I didn’t care, nor was it a reflection of the state of my relationships.  Rather, it was that I had not previously invested nor had the time to delve deeper into these relationships.  My cancer diagnosis has provided me with the time to focus on my relationships with those I care deeply about.  I think as a result, my relationships with family and friends have evolved into a deeper bond that I now want to continue to maintain and foster.

Cancer has not only offered me the ability to make more time for these relationships, but has also offered me the perspective and opportunity to reassess my values…to reassess my character…to look deep inside myself and discover what it is that I truly value in the present.  When I had coffee a few months back with my Rabbi, he asked, “In times of suffering, when there seems to be no light at the end of the tunnel, what will I look to for the strength to keep moving forward?”  I sat silently for a few seconds to reflect, and answered, “my family and friends.”  He questioned if there was anything else, and I began to tear up as I told him my answer:  to experience true love, to find the person I want to spend my life with, to have the opportunity to have kids…Everything that was rolling through my mind were not long-term oriented goals I wanted to achieve, but moments I wanted to have the chance to experience…to cherish in the present moment.

My journey is uncertain…there is no way to know what the dots will be in the future.  This experience though has offered me a true gift to assess what matters most to me, who I want to be as a person, and how I want to live my life day to day.  This does not mean I do not still have goals and aspirations I wish to achieve.  There are many issues I care deeply about, but instead of always focusing on these distant points, I know that if I follow my heart…if I live my life authentically…then no matter where my journey leads me, I will be content with how I lived it and where I ended up.

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.