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.
Click HERE to join my team for the 2016 Boston Brain Tumor Ride!
One Reply to “Why I Ride…Please join and support the 2016 Boston Brain Tumor Ride!”
Hi Jeremy, have you heard of Oligo Nation (http://oligonation.org/) ? It is a community-driven non-profit that aims to bring Oligo patients new treatments in the near future. We have already raised a lot of money, and funded research on immunotherapy. I am sure that you can be a valuable member of ours to fight the disease by raising funding for research!