Medical School Decision!

Two years ago today, I started my first day of chemotherapy. This morning at Dana Farber, I received news that my most recent MRI is stable, and I can now extend my scans to every 4-6 months! While the exam room for my visit was the same, it was surreal to think how much has evolved throughout this journey.

When I started chemo, I decided to apply to medical school. I had no idea what the future had in store for me, but I knew this was the path I wanted to pursue. I am now incredibly excited to announce that in just 6 weeks I will be moving out west to the Bay Area to join the U.C. Berkeley-UCSF Joint Medical Program!

Getting to this point was harder than anything I expected. From finishing prerequisites during treatment, taking the MCAT, to the year-long application process, I had no idea what I was getting myself into. Yet above all else, the greatest obstacle was my own internal struggle.

As I have written before, coming face to face with my own mortality provided clarity to what I truly value in life. For me, those values include family, friends, and using my time to live fully in the present. The medical school application process was often the antithesis of my values since medicine is inherently a future-oriented profession. Filled with uncertainty of my prognosis, time became more tangible. Taking that precious time to bury my head in studying or essay writing was difficult. Balancing my yearning to embrace the present while maintaining my goals for the future was at times almost impossible. There were several moments I wanted to quit, but I kept on. Not because of my own determination, but rather the support of my family, friends, and extended community.

I cannot express in words how thankful I am to everyone who has been a part of this journey. To my incredible medical team and Dana Farber’s Young Adult Program, you provided me the opportunity to progress from “cancer patient” to “incoming medical student” in just two short years. To my friends, and most importantly, my family…when the burden of uncertainty clouded my perspective, you provided clarity to why I chose this path. When I doubted myself, you gave me the strength to keep moving forward. For that, I am forever grateful.

Throughout this process I had to learn how to balance my present-oriented values with my future ambitions. I learned that in life we do not need to sacrifice one for the other. Goals are good. They get us out of bed, and even if we might not reach them, we can at least say we tried to achieve something greater than ourselves. These pursuits are only healthy; however, if they do not require us to give up our presence. To enjoy the people and places around us.

I feel incredibly lucky to be joining a medical program that not only enables, but also encourages me to find this crucial balance. During this decision-making process, the program’s values, approach to medicine, and pervasive sense of community felt like the best fit for me.

The Joint Medical Program (…or JMP for short), is a 5-year graduate/medical degree program rooted in collaborative inquiry and advocacy for social justice. For the first two and a half years, I will be based at U.C. Berkeley’s School of Public Health with 15 of my fellow classmates. Together, we will undertake a holistic approach to learning medicine through a 100% problem-based learning curriculum. Concurrently, I will pursue a masters in Health and Medical Sciences where I will have the opportunity to integrate my passion for the environment within my medical studies. Following that, I will transition to the clinical portion of my education at UCSF, and graduate in 2022 with my MD (…wow that’s a long ways away)!

Thank you to everyone who has been there for me along this journey. Please know how truly grateful I am. I look forward to continuing to share with you this new, exciting adventure as I transition from patient to practitioner.

Best,

Jeremy

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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.

 

On the road again!

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After being 6 months seizure free, I am finally back on the road!   It has been a year since my first seizure in Singapore, and I’ve been fortunate to have no seizures since February.  While it may seem minor, gaining the freedom to be able to drive again is a huge step towards regaining some of my independence as I move forward in my treatment.

Despite not driving a car for 2 years and  driving a motorbike in Indonesia on the opposite side of the road, getting back behind the wheel has been a breeze.  So watch out world because I’m back on the road (…on the left side, right?…just kidding mom)!  Now all that stands in my way is a minor detail…no car.  🙂

Moving forward during treatment: the difficulties of finding an appropriate balance

The following post may seem rather all over the place since it was written while all of these thoughts were swirling around my head. I contemplated rewriting a more refined summary of what you’ll read below, but ultimately I decided that posting the raw version reveals more about what going through this experience is actually like. And that’s what this whole blog is supposed to be about…

It has been quite a while since my last update.  It’s not that my mind has stopped spinning with thoughts (…in fact I have a to-write checklist of over 10 different topics), but rather things in my life both medical and non-medical related have been hard to keep up with.  My last actual update was about 3 months ago.  A lot has happened since then including starting my oral chemotherapy, Temodar, cycles as well as several memorable brain tumor advocacy events I was a part of.  I’ll write about those events and more in a future post, but what has been on my mind lately is how to move forward during treatment and what “moving forward” really means.

To catch you up a bit, I started my first Temodar cycle on May 1st.  The cycles consist of taking a high dose of Temodar every night followed by a 23 day break before the next cycle (28 days total)…or at least that is the ideal scenario.  In fact, I have had to delay my treatment by at least a week every time due to my platelet count (the part of the blood that aids in clotting and stopping bleeding) dropping too low to start the next cycle.  I can tell you about all of the hiccups in my chemo treatments since starting, but that would both be too many platelet numbers to remember and not really the reason I’m back writing after a long hiatus.  Instead, telling you about the past month will epitomize my challenges with treatment as well as serve as a healthy dose of self-reflection on balance and identity…because you can never have too much self-reflection ;-).

……….

It is crazy to think that all of this extended chaos began over eight months ago.  Although I don’t know if the saying “time flies when you’re having fun” is apt in this case.  For seven months, my life was filled with testing, uncertainty, treatment decisions, second opinions, more decisions, radiation treatment, more waiting, and now chemotherapy.  Seven months of my life solely focused on dealing with this uninvited visitor in my brain (…well it better be just a visitor, and not the guy that stays too long at the party when all you really want is for everyone to go home so you can get some peace and quiet…but I digress).

About a month ago, I started a summer course at Harvard to fulfill requirements for medical school (…which I’ll talk about a bit later in this post).  Since November, it is the first time I am finally moving forward with something not related to cancer.  It is the first time that when someone asks me, “what do you do?”, I no longer have to go through the complexity of my medical situation, but rather I can finally tell people I am simply taking summer courses.

Before I started my class, the idea of moving forward into an identity beyond “cancer patient,” was exhilarating.  Although a bit nervous, I couldn’t wait to get started.  In mid-June, leading up to my classes, I started to feel more anxious, particularly about whether I could handle moving forward with classes in the face of continuing fatigue from my chemo treatments.  The fatigue has probably been one of the hardest side effects of my treatment, and likely a primary driver of many issues challenging my sense of self.  During the five days when I am on the chemo, I feel relatively okay despite pretty painful stomach cramps if I don’t eat enough.  Usually around the 3rd or 4th day, some fatigue will start to kick in, but it is actually the post-chemo fatigue over the subsequent weeks that has been the hardest to deal with.

Worried about my class approaching and my constant state of fatigue, I asked both my oncologist, Dr. Wen, and my primary care physician, Dr. Busch, what they thought could help.  I told them that I’ve heard the exercise spiel from countless people, but unfortunately my body is so tired that even stretching takes a lot of energy out of me.  Plus, when my platelets drop (…which is often), I’m not allowed to work out even if I had the energy to do so.  This inability to exercise, both a physical reality and emotional hurdle, is extremely frustrating and one of the greatest drivers of issues I am having with feeling like I am losing my sense of self.  While I was in Indonesia, I was living an active lifestyle (…scuba diving, swimming in the ocean, hiking around waterfalls, climbing volcanoes, and going to the gym at least three days a week).  I know how good it feels to be in shape.  Not just how it improves your body physically, but how it strengthens emotional resolve.

When I was diagnosed with my recurrence I had daydreams of using this fragility of life experience to get into the best shape possible, or at least remain active as a means to cope with my treatment.  In reality, I have so far gone to the gym a whole 2 times over the past 8 months.  I do try to get some exercise in during my daily routine (whether that involves taking the stairs rather than the elevator, or walking instead of taking a car or public transportation).  But overall, I feel weak.  I feel weak physically to a level like I’ve never experienced before since my surgery 11 years ago.  But I also feel incredibly frustrated and disheartened.  I know how helpful exercise would be towards improving how I feel during treatment, but I can’t seem to get my body to do it.  This dilemma of knowing what would be best for me while being unable to actually accomplish it has been constantly tugging at issues of my sense of self.

To try to manage the fatigue, my doctors suggested Nuvigil, a wakefulness medication (…or basically a prescription upper).  After some wrangling with the insurance company, I was able to get the medication.  A week before my classes were to begin, I started a test run, taking one pill (150mg) a day.  If my energy was originally a 2 or 3, the Nuvigil “turned it up to eleven” (…for those pop-culture aficionados).  I felt immensely better, but now I had the problem of having too much energy.  I would at times feel “buzzed,” and I would either go from having too much focus (where 3 hours would fly by in a second), or feeling like the song, “flight of the bumblebee,” was playing in my head.  After some consultations with my doctor, we decided to cut the dose in half, and use it on an as needed basis.  Once we made that change, I felt great!  I felt like myself again, able to go play tennis, wanting to go for bike rides, having energy to go hangout with family and friends.  It was like night and day compared to my extended fatigue, and brought a lot of reassurance as I was about to begin my classes.

The first two weeks of my class started great energy-wise, but my expectation that this was going to be the moment I finally started to feel like I was moving forward failed to come to fruition.  I was able to keep up in the accelerated lectures and even enjoyed the material we were learning, but the disappointing feelings I was having were less about the class, and more about feeling like I was departing from my core values that have kept me grounded over the past 8 months.  This may seem a bit confusing and convoluted, so let me try to explain…  From my experiences with cancer, I have developed a deep appreciation for living in the present, and valuing what I consider to be the most important parts of my life, my family and friends.  However, during the first couple weeks of class, my entire time was spent working.  This was not much different from my days in college, or even at times my work in Indonesia.  In fact, the first two weeks were as if I was returning to some form of normalcy, one that felt quite similar to my life before my recurrence.  This normalcy though conflicted with values that have now become a more important part of my life since my diagnosis, in particular, living in the moment.  The tension between my present circumstance and values translated into a fear of losing myself to the cycle of everyday tasks and forgetting the values I had fostered since my recurrence.  I was afraid that this would develop into a pattern where this “new normal” didn’t quite fit with how I actually wanted to move forward during and post-treatment.

It sounds kind of drastic.  Two weeks into a class and I was already thinking about how it was creating a lifestyle that conflicts with my values, but as many of you know…that is the unfortunate way in which my brain works and thinks through situations.  Rest assured, I have not stopped taking the class. Rather, I think it has made me deal with an important question: How do I move forward in a way that balances my goals without sacrificing what keeps me feeling whole?  Upon reflecting back on those two weeks (…and keep in mind those two weeks were not too long ago), I think what created so much dissonance was the shock of reality not meeting my expectations.  I had thought that starting classes and “moving forward” would be freeing as if I would finally be released from the shackles of consistently focusing on my treatment, but it turns out that the process of moving forward came with its own restraints.  Don’t get me wrong, I’m enjoying my class, but I’m not so keen on the lifestyle it has boxed me into…and that has less to do with the class, and more to do with how I am balancing my time.

The concept of time changes when faced with cancer.  It becomes more tangible…more valuable.  I think this perspective on time is both a blessing and a curse.  It helps me appreciate the present, but also introduces a fear of losing time.  And that’s where I think my fear over the first two weeks of my course evolved from.  Before starting the class, I spent my free time with family and friends, reading books, writing, and appreciating what was around me.  During the start of the class though, an entire day would go by, constantly working, always left with a perpetual “to-do list”.  At the end of those days I would have a horrible sinking feeling as if I wasted the day…my time…time that I could have spent doing something that I would find more fulfilling.  I know we can’t all realistically spend every moment in the most ideal way, but when living through the uncertainty of cancer, where the value of your time remains uncertain because you don’t really know how much you actually have, it can be difficult to reconcile.  But what I think is important, and what I am starting to understand, is that it is not always necessarily the activity that determines whether it was worth your time but rather the perspective in which you approach the activity.  I was going to save the following quote for another post about my plans for future education, but as most of my blog posts go, I did not expect this much of a tangent.

Mahatma Gandhi once said, “Live as if you were to die tomorrow. Learn as if you were to live forever.”  This quote has helped keep me grounded as I move forward with my goals to apply to medical school.  Yes…you heard that right…medical school.  This post isn’t really the right place to go in depth as to why I’ve made this decision, but it reveals the source of a lot of the tension I’ve been feeling.  For me, becoming a physician isn’t about the “What” (…that goal at the end, or the doors it will open down the road).  Rather, it is about the “How” (…the way in which I want to work day to day, how I want to interact with the world, and how I want to harness empathy to connect and heal).  This creates quite a dilemma though.  In fact it is a bit oxymoronic.  My values I have gained through my experiences, (particularly wanting to focus on what I will enjoy in the present rather than ambitions down the road), have led me to a path that is traditionally very future-oriented.  So when I am sitting in my rented dorm room spending the entire day studying for physics…a fear of losing time…a fear of losing what I value as part of my self-identity grows.  But as I am starting to learn, it is about perspective.  I know in my heart that the path I am on has evolved from what I value in life and how I hope to impact the world, so instead of the physics problem-set being a waste of time, it is in fact a stepping stone along the path to follow my heart.  The dichotomy of Ghandi’s quote is what I believe is the answer towards moving forward in a way that balances my values and goals.  Living in the present (…or “like you were to die tomorrow”) does not necessarily mean everyday doing grandiose activities (like scuba diving along coral reefs or climbing up volcanoes).  Rather, it can mean taking a step back from time to time and calling your family, getting a bite to eat with a friend, or simply stopping to let in your surroundings.  As Ghandi eloquently put, we can both learn and live fully without having to sacrifice one for the other.  It just requires looking at it with a certain perspective.

After the two-week mark, I started getting a handle on how to balance my physics course with how I wanted to be moving forward during treatment, however, my schedule became a lot busier in July.  Over the past few months I have been fortunate to talk with several doctors and researchers working at the intersection of environmental health and public health.  This has led to a research opportunity with a professor at the Harvard School of Public Health to investigate the relationship between coastal management and nutritional health of populations throughout Indonesia.  The professor graciously offered for me to sit in on a course he was teaching this summer about analyzing nutritional health data on a country-level scale so that I could gain the skills I needed for the research project.  I immediately said yes to this opportunity, unaware of how my body was going to react to the chemotherapy.

Once the course began, my schedule became a 5-day a week affair.  After everything you have read so far, you may think I must have been crazy to do this, but I had no idea how I would feel during this period.  When I was making plans for my summer, I wasn’t going to let the uncertainty of my treatment paralyze me from moving forward.  So I went into the summer with a busy schedule, but one that I under normal circumstances could handle.

Unfortunately, as I began the public health course, I started to not feel well.  During my chemo cycles, I get my blood checked every 3rd week to get a baseline level.  I then get my blood tested again on the 4th week when I meet with my Oncologist, who determines based on the tests what the next dosage should be. On the last week of June, my platelets were at 105, a perfectly safe level, but just teetering above 100 (…the cutoff for starting the next chemo cycle).  The following week, I met with my oncologist.  The appointment was a mixed bag of news.  There was some really great news (…which I’ll share in my next blog post), but there was also a lot of disheartening parts to the day.  My platelets dropped to 57, my weight had dropped to 140 pounds (…I was 160 when I left Indonesia), and due to my seizures several months ago, my doctor felt that I should not apply to any ambulance jobs (…after I had spent a good amount of time renewing my EMT license).  Now let me parse this out a bit because I haven’t really talked about some of these issues yet in my previous posts.

My weight has been steadily decreasing throughout treatment, to the point where at times I crudely joke that I feel like I’m becoming translucent.  This is due to a combination of factors, but ever since I started treatment, I haven’t had much of an appetite.  It’s not that I don’t get hungry, but when I eat it is usually because I know I need to eat rather than because I actually want to eat.  In fact, I can’t really remember the last time I had a craving for something.  I was told that the chemo could change my taste for food and affect my appetite, but I did not expect it to be this much of a difference.  When I eat, I can usually eat a full meal, but it never seems to be enough to keep up with the weight loss.  Part of the decreasing weight I think is also related to losing a lot of muscle mass since starting treatment.  All of this combined has made me rather self-conscious as well as perpetuated my feelings of being weak and losing my sense of self.  I know that eating and exercise are crucial towards my physical and mental health, but as treatment continues it has been hard to push against these challenges.

The driving issue that came up during the appointment brought up a lot of past frustration.  My last seizure was February 11th, 2015, just before I started my proton radiation treatments.  The law in Massachusetts says if you have had a seizure, you have to wait 6 months to be able to drive.  This law though is incredibly general (…as are most rules related to seizures, but I won’t go off on that tangent).  The law assumes the worst, a grand mal seizure, which is when you lose full control of your body and become unconscious. I’ve never had that type of seizure, instead, all of my seizures have been focused on my right side while I’ve been fully conscious.  In fact, during the last seizure on February 11th, I kept eating dinner with my friend using my left hand while my right arm continued to shake (…more as a crude joke and not because I was actually that hungry).  I completely understand the rationale behind these driving rules, and also my doctor’s hesitation in providing exceptions to this rule.  I understand that focal seizures can develop into grand mal seizures at any time.  That doesn’t detract though from the frustration I feel, particularly because for me, this has been going on for such a long time.  Obviously I couldn’t drive when I first had my surgery when I was 12, but over the past 11 years I have constantly had to face restrictions related to my seizure history or physical disabilities.  Hearing that my doctor wanted me to hold off on applying to ambulance jobs for a while to be on the safe side just added to the ongoing history of restrictions.

That appointment was a stark reminder of my medical situation.  Starting classes this summer had offered a distraction from all of the medical issues going on in my life.  I created expectations and a vision in my head that didn’t include constantly having to focus on treatment.  However, like a shackle, the medical bracelets I receive at every appointment reminded me that while in some ways I am moving forward, in many ways I remain chained to my current medical situation.

My platelets dropping perpetuated these feelings, particularly because it coincided with the start of the public health course.  Throughout the week, I had to keep going in for blood tests to make sure my platelets did not drop to an unsafe level.  My platelets dropped to 52, still safe, but closing in on the range where you need to start considering a transfusion (usually 10-20).  I wasn’t really worried about the platelets as I knew this was a symptom of the chemo, but the constant blood tests and scheduling potential transfusions served as a perpetual reminder of my medical situation.

With my platelets dropping, I started to feel fatigued.  Even when I took the Nuvigil, I would crash for 3 or 4 hours every afternoon.  This was incredibly frustrating because it made balancing everything I was doing even more difficult.  In addition, it perpetuated my eating and exercise issues that I discussed previously.

The fatigue has also led to feeling disconnected at times since I’ve often had to cancel plans with friends because I simply feel too tired to go out. I thought that I could move forward with my classes and social life in a way where my medical treatment was a side-note to my everyday experiences, but it turns out I have underestimated how the treatment would make me feel.  When I introduce myself to other people in the graduate dorm I’m currently living in, I tell them I’m a summer school student.  I thought that being able to say that without having to mention my medical situation would be liberating, but it hasn’t.  And that’s because yes, I am now a summer school student, but I am also undergoing cancer treatment, which is significantly impacting my day to day being and interactions with people.

If you’ve made it this far…wow I’m impressed! This may be one the longest and most tangential posts I have written. It reflects though the tensions I have been feeling in multiple areas of my life over the past month. A lot of these emotions are still raw and developing. Like a few posts I have written before, I have gone back and forth on whether or not I wanted to make this public. In some ways it was a means for me to release the “pressure release valve” and put all of my thoughts onto paper, so I thought perhaps I should keep this one to myself and write something more “refined”. But I think that would be a disservice to me and those who follow this blog. One of the greatest lessons from my journey has been to embrace vulnerability as it often leads to recognizing commonality in experiences. This blog is supposed to be about the journey of living with brain cancer, and the emotions I have described above are a real part of that journey. Some areas are specific to me, but I think we all (whether dealing with cancer or not), face some similar issues.

Today I begin my next chemo cycle. While I’m obviously not looking forward to the cycle of fatigue repeating all over again, I feel a bit more comfort in having a better sense of how to move forward in a way that balances my treatment. Up until about a week ago, I was hitting a breaking point, having pulled myself in so many directions while simultaneously feeling unwell from the treatment. In some ways I needed this breaking point…the bubble of stress and fatigue to pop…so that I could take a step back (with clarity) to evaluate what wasn’t working and how I could move forward with a more balanced approach.

And when it comes down to it, the difficulties I have been having this past month all relate to issues of finding balance in life. A few months ago when I first put together my schedule for the summer, I made it with a clear intention to not let the uncertainty of my circumstance paralyze me from moving forward. However, I also recognized that I may not feel 100% during my treatment, and if that was the case, I would have to scale back. I think a lot of my emotional distress this past month developed from forgetting this conditional agreement I made with myself. From the moment I started the physics course, things started to feel like normal again, a feeling I had not had for over 8 months. So when I had my medical appointments, when my platelets dropped, and when my fatigue came back, it was a shock to my system. A shock and frustration that I wasn’t able to move forward in the way that I expected. But what I have learned is that this is okay, and really what this whole journey is about. It’s a process…continually moving forward with bumps in the road…changing over time. Some days are going to be good, and other days (…or periods of time…) may feel like nothing is going right. I have found that it is important to be accepting of this uncontrollable nature of my situation, and be gentle with myself when things are not going as expected.

Finding a balance is a perpetually evolving process. Right now, it means making sure that no matter what I am doing, I have the time and energy to do what is best for my health during treatment, in particular making sure I am eating enough, getting a good amount of sleep, and exercising as much as I can. When my treatment is over, I’ll have to renegotiate what the appropriate balance is, which will involve a lot of self-reflection about my evolving identity and what makes me feel whole. What is important to remember when going through life is that no matter how unbalanced things may feel, we always have the power within ourselves to make a change.

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!

Radiation Complete…Gratitude and Next Steps

Everyone has been asking me how does it feel to be done with radiation…Are you excited to be done?  I don’t really know how to answer.  It’s strange.  I’m finishing the first major step of my treatment, and after 6 weeks of going in for radiation 5 days a week, I can finally move on to a different routine.  Part of me thinks I should feel like this is a momentous occasion…a milestone reached.  But I don’t feel that way.  I’m not sure if it is the fatigue from the radiation or that the past month and a half feels like it has only been a few days, but the ending of my proton treatment just feels matter of fact…the next step along this roller coaster of a journey.

That’s what I wrote last weekend before my final treatment…but despite those lingering feelings, after stepping off of the proton machine yesterday, I celebrated!  Cancer journeys can be long.  From spending half my life living with cancer, I have learned it is important to celebrate every milestone no matter how small or big it may feel.  I have learned it is important to appreciate these moments, and recognize the privilege, effort, and support that is involved with getting to these milestones.  That is why after my last proton treatment I was filled with mixed emotions:  a lot of fatigue, joy, anxiety over what’s next…but above all else, a huge sense of gratitude.

I feel immense gratitude to everyone who has made these past 6 weeks go by flawlessly.  First, I have to thank my family for continuously supporting me.  To my Dad for helping arrange the apartment in Cambridge that made the logistics for getting to my treatments incredibly easy…saving me a lot of much needed energy;  To my Mom for the delicious and constant supply of food to meet my non-stop “grazing” chemo-radiation diet as well as emotional support along the way;  To my brother and sister for always being there to chat with, hang out, and lean on; To my extended family for their continuous support, food, and chocolate;  And to all of my friends who have helped me pass the time with joy and humor.  There are too many people to thank, but if you are reading this, please know how appreciative I am for all of your support.

I feel tremendous gratitude for the entire radiation oncology team at Mass General who made this treatment possible.  The amount of people and work involved with my proton treatments is truly mind-blowing.  From my incredible radiation oncologist, nurses, and techs, to people I never even met (…including the physicists, dosimeters, and many others).  In particular, I want to thank the staff at the proton center.  Paul and Elaine for their constant kindness at the front desk even in the midst of a tornado of phone calls and organizing as well as Maryellen, my nurse, who always took the time while passing through the waiting room to check on how i was doing, reassure me that my blood counts were at normal levels, and never stopped having a smile on her face.

Finally, to my proton technician team:  Katie, Scott, Gary, and Hui!  Not only are they amazing at their jobs, but despite the long and stressful days, they always approached my treatments with incredible kindness and humor.  They treated me like a friend in a setting where it is very easy to become just another patient number.  Whether it was fights over music choices from Gary’s rock, Scott’s EDM, and Katie’s Beyonce, to Katie discovering Narwhals were a real animal from a sprint commercial song, they all went above and beyond to make the treatments go by easier while providing extremely high-quality care and concern.

Throughout all of my medical experiences over the past 11 years living with cancer, I have learned it is the people you interact with everyday during treatments who make all the difference.  It is very easy for cancer treatment to become like a factory assembly line.  The past 6 weeks could have been a monotonous routine of stressful treatments, but it was the staff I interacted with everyday who made all the difference.  Everyone at the proton center were not only amazing at their jobs, but they approached it with immense kindness and humor that made the entire process go by much easier…and for that I am truly thankful.  The past 6 weeks of radiation was only the first step, but it was an important step during my long journey of kicking this cancer’s butt.

Next Steps:

After finishing my radiation treatments I had my oncology appointment at Dana Farber.  The plan is to wait a month to have my next MRI.  During the next month I will stop all of my treatments to allow my body to recover from both the chemo and radiation.  The fatigue from the proton therapy can increase after the treatment over the next several weeks.  For younger people the fatigue usually dissipates after a few weeks, and then can oddly reemerge months later (…whereas in older patients, the fatigue can last for several months post-treatment).  The proton treatments can also cause increased brain swelling, which is why I will get the MRI in a month.  I am also stopping the chemo because the doctors have found that continuous Temodar treatment after 42 days could lead to increased toxicity and lower blood counts (a.k.a. it can hurt my immune system).

Once I get my MRI in a month, I will begin the longer-term oral chemotherapy treatments.  This will consist of 5 day periods taking the Temodar (…with 23 days in-between) at double my previous dose for at least 6 months.  The amount of time I will be on the Temodar will depend on how my body reacts to it.  I will get frequent MRIs to see if the treatment causes the tumor to shrink at all.  In addition, I will get blood drawn every week to make sure that my platelet levels are at a healthy number.  If my body can maintain healthy blood levels, and the doctors see positive results in my MRI scans, then I may continue the chemo treatment for up to 12 months.  However, if the toxicity levels build up too much, we will cut off the chemo at a certain point after 6 months.  It will all depend on how I am doing week by week.

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In the meantime though, I will enjoy the next month being treatment-free and hopefully gain some of my energy back as the weather starts to warm up!  I am incredibly grateful for all of the support that I have received.  I am blessed with immense privilege both in my medical care and all of the support I have around me…please know I do not take any of this for granted, and I am incredibly grateful.

Some of you may know that in my long periods of fatigue, I spent many hours curled up on the couch watching West Wing on Netflix.  Over the past 6 weeks I watched the entire series from start to finish…so much so that some days (particularly when I was pretty out of it) I would mix up real news for “West Wing” news.  (As a tangent) Given the amount of episodes in the series, I think West Wing is one of the best binge-watching shows out there, and I’m fairly confident that if it was required training material for political office, our government would function a lot better.  The reason I bring up West Wing though is that in the final scene (…which I watched the night before my last treatment), Jed Bartlet (the retiring president) gazes out the window of Air Force One, and is asked what he is thinking about.  He responds… “Tomorrow.”  As I write this, about to pack up my things and head back to Concord after 6 weeks of intensive radiation, it is nice to be able to think about tomorrow and all of the possibilities it holds…and for that, I am again, truly grateful.

Here are some photos from the final day of treatment:

My awesome team of techs (a.k.a. Team Narwhal!):

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Graduating with my diploma from the MGH Department of Radiation Oncology (…it will go right next to my college diploma):

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And finally, nothing like a chocolate trio dessert to wrap up the night…because as my sister knows:  “Chocolate doesn’t ask silly questions, chocolate understands.”:

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Also, here’s the video of my epic-fail while trying to ring the “end of treatment” victory bell.  Who knew you were supposed to ring it perpendicular to the hinge?  I thought I was going to break it!:  LINK