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.