In my first post to my Past Inspiration photo series, I’ve chosen this photo of two boys passing by on their boat at Inle Lake in Myanmar during the end of my Luce scholarship year. It reminds me to appreciate what I have, and to find joy everyday in life. I hope you all have a happy holiday!
One of the most difficult aspects of dealing with this experience is waiting. It has been about a month now since I found out about the tumor, and I still do not know what the next steps will be. We are still waiting on the results of my functional MRI to determine if surgery is possible, as well as the molecular tests to see what type of treatments can be used. The scariest part of this waiting is the unknown. How long will this go on for? A year, 6 months? What state will I be in after all of this? Will I be able to move my right side? Is this going to be a lifelong struggle or a temporary obstacle? These are just some of the thousands of thoughts that spiral through my head on a daily basis. What I’ve learned though from my past experience with cancer is that speculating about the unknown is not only unproductive, but can be detrimental to one’s health. However, it is much easier said than done to stop your mind from spinning, but over the past month there have been various moments and methods that have helped me try to stay focused on the present.
My first week home after finding out about the cancer, I was depressed. All I wanted to do was lay on the couch and watch movies. I even started playing video games again (…something I hadn’t done in a long time). For me, these virtual realities served as an escape from my own reality. I thought I would be better off escaping from what was going on until we had information to fill this gap of unknowns. However, sitting around all day became very boring. Once the allure of the virtual reality faded away, actual reality began to creep back in. That is when my mind would start spinning, questioning, and getting worried about what will happen in the future. This would in turn fuel feelings of helplessness and depression. In my writings about being a survivor, I have often spoken about how important it was to not let this sense of unknown take over, but to live fully in the present. During this first week I had lost that feeling. I would try every now and then to walk my talk (…so to speak), but found it to be extremely difficult.
There was a specific moment though that helped me reach back into myself and break this cycle of depression. One of my friends from my time living in Madagascar posted a link to her cousin Nathan’s blog. Nathan was recently diagnosed with an inoperable brain tumor. Reading his posts about his experience and the positivity he maintains inspired me. He reminded me of my philosophy to live life to the fullest. He also reminded me of my privilege to have a range of treatment options available, so that when the time comes to fight this tumor, I am going to fight it as hard as I can. I also started thinking about how I would feel a few months later looking back on myself now, and how disappointed I would be to see myself letting time slip by.
I felt a boost of energy to make the most of my time, but I still felt terrible physically. My neurologist told me to keep a log of my symptoms, and being a science major, I turned it into a meticulous spreadsheet. It felt like I was adding a row every few hours. Headaches, visual auras, ear ringing, pain in my hand, tingling in my foot, and strange feelings throughout my right arm. During this time I also had two seizures. These physical symptoms were making my emotional symptoms worse, and vice versa. The physical and emotional states of being are intrinsically linked. My constant stream of thoughts made it difficult to fall asleep, leading to fatigue throughout the day. This fatigue amplified my symptoms even more.
I made an appointment to see my neurologist and discuss the symptoms I had been having. We had a long discussion in which we both agreed that focusing on my emotional health was just as important as my physical health. I would often discount my emotional stress because mental health can in many ways feel intangible. My doctor and I decided to focus on getting me back to a normal sleep schedule. I had already been on 1000mg of Keppra morning and night for the seizures, but we also added 0.25mg of klonopin twice daily to help with the anxiety.
Since making that change two weeks ago, I have started to get back to a normal sleep schedule. Physically, I am now feeling the best I’ve felt in two months. While I still get some headaches, auras, and sensory seizures, I feel full of energy. Despite this, there are still times where I find myself stuck in a bought of depression, fear, and helplessness. What has been the most helpful “cure”, but also the hardest to accept, has been opening up to support and making myself vulnerable. I will talk about that further in my next post, but for now I want to thank everyone again for the amazing support as I wait to find out where this journey will take me.
Waking up this morning I was truly blown away by the heartfelt messages everyone has been sending. The amount of support I have received overwhelmed me to the point of tears. I have spent the past morning and afternoon reading through the messages from family, friends, and even complete strangers. I want you to know how grateful I am, and how much hope and inspiration your support has given me. I will be sure to get back to everyone soon, and for those who said they will be in Boston, I cannot wait to catch up!
The blog has already received over 1,000 views from over 30 countries. I am not only grateful for this support, but I also recognize how much of a privilege it is. I hope this blog will evolve into a platform where I not only can share my experiences, but also help others going through a similar journey. There are so many aspects to living with brain cancer, both physical and emotional that relate to various facets of life beyond my own personal experience. I hope this community, awareness, and reflection, can transform into some of the meaning I am searching for during this journey.
To share this with a larger community, I have created a separate Facebook page where I will link my posts. Please like the page, sign up to follow the blog, and share it with your communities. By doing so, I hope my privilege of support can translate into larger benefits for others.
Thank you for the support, hope, and strength. You have overwhelmed me in the best way possible, and I hope this blog can be a small way for me to give back to you all and others.
My doctor has a tell when she has bad news. She will start telling stories to help calm down the mood, but in reality it elongates the anxiety. A couple weeks into my first visit back from Indonesia, I had my annual MRI appointment at Dana Farber. As my doctor was talking, my heart was pounding, and I could tell my mom was uneasy. A few minutes later my doctor told us the bad news: There has been significant tumor growth in the area of my brain where I had my previous tumor removed 11 years ago.
This all started a few months ago when I was visiting a friend in Singapore. While relaxing in a hostel planning a night exploring the city, I had a seizure on my right side. This was my first seizure since before my brain surgery and tumor 11 years ago. Like my previous seizures I was awake, but this time both my speech and general awareness was affected. I had an MRI and was monitored in the hospital for a week. The doctors found no change compared to previous scans, and attributed my seizure to the scar tissue around my resection site (a.k.a. hole in my brain).
I returned to Bali, and resumed life as usual. Well…not completely usual. I started taking keppra, an anti-seizure medication that causes significant drowsiness and fatigue. After a while I eventually got used to the medication, but then I started to have frequent headaches and odd feelings in my right arm. In October, just two weeks before my first trip home in a year and a half, I had another seizure. This time the seizure was focused on my upper right side, arm, and face. The seizure, combined with an unknown virus I contracted, made me incredibly tired for the next few weeks. My headaches continued to get worse, and the odd feelings I would get in my arm became more frequent. Fast forward a month (…and a 36 hour plane ride), and I was back in Boston getting another MRI.
When my doctor told me that my brain tumor was back, my heart sank. Given how I had been feeling over the past few months, I wasn’t fully surprised, but still shocked. The tumor has grown outwards from where I had my surgery when I was 12 years old. It is located in the motor-sensory cortex on the left side of my brain, which controls movement and sensation on my right side. The majority of the change can be seen comparing my scans from just three months ago, but compared to my scans a few years back, the growth has been significant.
On the drive home I didn’t know what to think. My life had suddenly come to a stop. Here I was looking forward to my first visit home, and now I didn’t know what the future had in store, and I still don’t. My head started to fill with thoughts about the future. All of the “what ifs” started flooding my mind. I kept trying to reconcile what all of this meant for my hopes and dreams, for my future, for how much of a future I could look forward to.
Since then, we have been running several diagnostic tests to figure out the best possible treatment plan. 11 years ago I had my surgery at Massachusetts General Hospital. It just so happens that the hospital still has the tissue sample they took during my surgery. While it is strange to think my brain (…or at least a piece) is sitting somewhere in a jar, I am sure glad the medical community has a hording tendency. There are a lot of new molecular tests available now that my doctors are using to help determine the best type of treatment for the tumor. In addition, I had a functional MRI about 2 weeks ago where I performed a variety of motor, visual, auditory, and memory tests while they took images of my brain. This will help map out my brain function in relation to the tumor so that we can decide if surgery is possible, and if it is possible, to what extent we can remove the tumor without sacrificing too much function.
And now we wait…which sucks. The past month has been an agonizing waiting game until we get the results back to determine our next steps. I am incredibly privileged and lucky though to have one of the best teams of doctors at Dana Farber. Since my original surgery, I have been seen at Dana Farber’s pediatric brain tumor clinic, one of the best in the world. The day after my neurologist told us the news, she discussed my case with a team of over 20 doctors, all of whom are leaders in their fields. This multidisciplinary approach and my amazing neurologist gives me some form of comfort that whatever recommendation they provide, it will be the best possible treatment plan I can get.
The irony of all of this is that I found out about the cancer recurrence just 5 days before my 11 year anniversary of my original diagnosis. Initially it felt like I was travelling back in time 11 years ago to square one. Over the past few weeks, however, I have come to realize how different this experience is going to be as a young adult. While there are both good and bad differences of dealing with this experience now as a 23 year old (…which I’ll discuss at another time), the most meaningful difference is that my support network has become so much bigger. I am truly blessed to have amazing support from family, friends, and communities throughout the world. That is why I am writing this post so that everyone is updated on what is going on.
I hope this blog will serve as a means to continue to keep everyone updated, but definitely not as a replacement to talking in person, over the phone, or via email. There are so many thoughts going through my head, so this blog will also be a place where I will try to digest my thoughts, and share them with you so that hopefully it can serve as a resource to benefit others.
If you are hearing about this news for the first time via this post, I am sorry I could not tell you directly, but please know I am always open to catching up in person or over the phone. For many of you reading this, it has been a long time since we have spoken because I have been abroad for so long. The one silver lining of this unfortunate circumstance is now I have more time to see family and friends. I don’t know what the future has in store for me, but I do know that I have an amazing group of people who have my back. I am incredibly thankful for that, and I hope I can use this blog to help find some meaning in something that can seem so meaningless.
For more information about my intentions for this blog, you can visit the (About Jeremy) page.