End of an Era: Living with Oligodendroglioma

I was born on a Tuesday deep in the heart of South Carolina. Over the next eighteen years, I found myself in coastal Carolina, Singapore, Houston, Saudi Arabia, Kentucky, and Raleigh, North Carolina. My life was a dichotomy of classes: a mother brought up dirt poor in eastern Kentucky and a dad with a life of well-to-do means and foreign pedigree. How I fell astray is a question best answered by our elected representatives and my own personal struggles.

The collision

My life came to a grinding halt in the City of Oaks on December 13th, 2007. I was following a coworker to Durham, forgot my seatbelt, and hadn't noticed she had come to a stop light. Bing. Bang. Boom. Police report. Car towed. I was off to Duke for concussion protocols. A CT scan later, the doctor said, “You have a brain tumor.” Snap your fingers, and he was gone.

The diagnosis

My parents were in Saudi Arabia and my estranged sister was in Kentucky. Strings were pulled. Calls were made. A Grade II oligo was removed on Christmas Eve 2007 at Duke University. Nobody likes to talk about being diagnosed with cancer in the prime of their life, right before the ACA kicked in and right before the Great Recession.

At 21, being told I had a brain tumor, I thought: This is it. My life is over. Feeling the follow-up care was inadequate, I transitioned to MD Anderson in 2013. Over the next decade, my medical journey proceeded as one would expect.

Signs and seizures

Stone cold sober, I had my first seizure under the North Alabama stars. I woke up in the dead of night, sweating, needing to wash my duvet and sheets. I knew something was awry. My neurologist ran an EEG and threw me on Vimpat.

My mindset wasn’t right. I was still on my warped walkabout and hadn’t been taking my medication as prescribed. I paid the price. Why hadn’t I accepted life as it was? A few good old-fashioned tonic-clonic seizures will sure teach you good. 110% guarantee you that.

Identity and isolation

COVID-19 hit while I was in Beaumont, Texas. I had no ties. I could, in theory, float away like Forrest Gump’s feather. My mind remained hyper-focused on MD Anderson because of mortality fears. Without my oligo, who am I? I have built my entire identity on something I have absolutely no control over. Long story short, at my last appointment, the obvious was told.

Knowing I needed surgery, chemo, and radiation while incurring more seizures, I remained in Texas until I couldn’t abide any longer. I reluctantly headed back east.

The dystopia of care

Upon moving to Florida, I was presented with new challenges. Transferring ACA coverage to the "Free State of Florida" is obtuse. Everyone is a loser. Healthcare in the United States is dystopian; I wish Teddy Roosevelt were alive today.

I have invested my entire life around this tumor. This past resection indicated it was a Grade III. I wish things had lined up better. Reaching out to PIs and research coordinators at institutions like UCSF, Yale, and the Mayo Clinic has been lopsided and disincentivizing. It hurts when one suffers from a rare disease for nearly two decades and has only qualified for one ‘fruitless’ clinical trial. I feel the effort I have put in as an AYA survivor has been wasted.

A final departure from research

This is why I no longer wish to contribute to brain tumor research. My attempts to connect support services with my medical team have been futile. I am sorry that I can no longer continue to fight for those that don't seem to want to hear my shared fight.

It is a shame that brain cancer organizations and pharmaceutical conglomerates aren't able to do something similar to the Susan G. Komen Foundation. Surely, gray matter matters…

After nearly two decades of this oligo, I am tired. Institutions like Duke and MD Anderson have just lost a research candidate. I have spent twenty years in the trenches worrying about a disease that doesn’t define me while having organizations reject my voice.

2007-2026