Welcome to My Personal Page
In November, 2003 at 12 years old I had a seizure in school. Doctors later found an oligodendroglioma brain tumor on the left motor cortex (the area that controls movement on my right side). In February 2004, I had surgery to remove the tumor, resulting in lingering physical and cognitive deficits.
This experience taught me to live life to the fullest, and for a decade I was fortunate to live an amazing life traveling the world. I sailed the high seas, dove at some of the world’s most beautiful reefs, and lived in Indonesia. In February, 2014 I celebrated my 10 year anniversary being cancer free from the serene rice paddies of Bali.
In November, 2014 I returned home from Indonesia for what was supposed to be a brief Thanksgiving vacation. After 10 years of stability, my MRI scans showed significant tumor growth surrounding the resection cavity of my original surgery. Due to the tumor’s location in the motor cortex, the doctors considered my tumor inoperable, and I went through over a year of radiation and chemotherapy.
To use my experience to give back to others in a way that values human connection, I decided to apply to medical school while undergoing treatment. I am now a medical and graduate student in the U.C. Berkeley – UCSF Joint Medical Program.
I have always known it is a matter of “when”, not “if” my tumor will recur…the uncertain reality of living with brain cancer as a chronic illness. Treatment in 2015 was meant to kick the can of recurrence down the road. I thought I had more than 3 years, but in March 2018, after experiencing several localized seizures in my right arm, my MRI scans showed new growth.
On May 22nd I underwent an awake brain surgery at UCSF to obtain a biopsy and remove as much tumor as possible without sacraficing significant functional loss. While the surgey was successful at removing part of the tumor, the biopsy results were not good. The tumor has evolved to a grade III anaplastic oligodendroglioma.
Given my life-history with this tumor, its location, and it’s unique pathological and molecular makeup, I’m an N of 1. Meaning, there is no past research group I fit into that can tell my doctors and I what this means for my life and what treatment is best. There is no standard of care. If I were to go to five different medical institutions, they would likely give five different treatment recommendations.
I’m not the only N of 1 who is needing to rely on institutional intuition rather than evidence-based established treatments or cures for brain tumors. Despite an estimated 700,000 Americans living with a brain tumor, there have only been four (yes 4!) FDA approved drugs – and one device – to treat brain tumors in the past 30 years. These drugs have provided only incremental improvements to patient survival with mortality rates remaining little changed in the past 30 years. I find this unacceptable.
There will be no cure, no new treatments, unless there is funding. In the past I have biked, and this year I will walk, for all the incredible people I have met along my journey who passed away far too soon. I will walk for those like me currently undergoing their own journey with brain cancer. I will walk, ride, swim, and do whatever it is I need to, and can do, until there is a cure.
To follow my journey you can go to: https://jeremys-journey.com/
Please join me at the walk!
National Brain Tumor Society is fiercely committed to finding a cure for brain tumors. They are aggressively driving strategic research; advocating for public policies that meet the critical needs of the brain tumor community; and providing comprehensive patient, family and caregiver resources. Your support ensures this important work will continue.
If you think this page contains objectionable content, please inform the system administrator.