Working Through a Life-Changing Rare Brain Tumor Diagnosis

June 26, 2024, by Mikaeel, Oligodendroglioma Survivor

I have lived with a rare brain tumor for almost four years. During that time, I have tried to take a “mind over matter” approach. My work as a cybersecurity professional is very important to me, and it has uplifted and distracted me during the bad times. I have learned to focus on the things I can control—and surround myself with experts who can help me make the best decisions for my physical and mental well-being.

I first noticed something was off in the fall of 2020. At the time, I was working at home due to COVID-19 restrictions. I was sitting in my home office, and suddenly I couldn’t remember a particular computer command and how to run it. This caught me off guard, as I had run this command many times before. My thoughts were racing, but I was unable to verbalize them. When I opened my mouth to speak, only unintelligible sounds came out. Later, I learned this was called an aphasic seizure.

I wanted to panic, but instead I tried to focus on my breathing and calm myself. For the next few minutes, I sat there with my eyes closed—unable to move my limbs but taking slow, methodical breathes. By the time I made it upstairs and found my wife, I was able to explain what had happened. We rushed to the nearest urgent care.

Balancing Work and Treatment

I was ultimately transferred from urgent care to an emergency room and then to a local hospital. After a barrage of tests—including a computerized tomography (CT) scan and a magnetic resonance imaging (MRI) scan—they told me I had a large mass in my frontal lobe.

I did not know that my tumor was a grade 2 oligodendroglioma until after my brain surgery. The neurosurgeon was able to resect 95 percent of the tumor, but he couldn’t remove it all for fear of damaging the part of my brain in charge of speech. 

I waited about a month before returning to my cyber security work. I started with a reduced workload, which was enough to take my mind off my condition. At first, my short-term memory wasn’t very good. I struggled to remember names and find certain words. I ended up downloading an app called Elevate so I could play brain training games. 

After I had recovered from my surgery, my neuro-oncologist and I agreed we would hold off on further treatment until necessary. I would receive MRI scans every few months to ensure the tumor wasn’t growing. That way, I could work toward returning to my normal routine.

That same neuro-oncologist also referred me to the NCI-CONNECT Clinic at the NIH Clinical Center in Bethesda, Maryland. I enrolled in two NIH clinical studies. The first is led by Jing Wu, M.D., Ph.D., and examines the biology of my tumor. The second is an observational study called the Natural History Study. I also had consultations with Marta Penas-Prado, M.D., who helped me find a local neuro-oncologist when mine moved to a different state. Today, I continue to receive routine care from my new neuro-oncologist, and Dr. Penas-Prado is available for collaborations and consultations as needed.

In the fall of 2022—nearly two years after my diagnosis—the scans showed that my tumor was growing again. My neuro-oncologist and I decided to try radiation followed by a trio of three chemotherapy medications: procarbazine, lomustine (also known as CCNU) and vincristine. This combination treatment is called PCV for short. To help others who may be considering PCV, I wrote an article sharing my experience.

I was unable to complete the full PCV course because my side effects got so bad. I developed rashes all over my body, my limbs swelled, and my white blood cell count dropped. I ended up in the emergency room twice. Although I only finished four of the six treatment cycles, my doctor said I had made it far enough to receive the full benefit. My most recent scans have not shown any growth. If things change, my doctor has other treatment strategies I can try.

Mind over Matter

Despite being fatigued, nauseated, and constipated, I continued to work 40-hour weeks throughout my treatment. I am thankful for my job because it helped distract me and get me through the uncomfortable side effects. I was able to take days off when needed and even take short mid-day naps.

I’m still having some trouble with my short-term memory, so I rely on apps like Google Tasks to keep my to-dos straight. I use it to remind myself about work meetings, social activities, projects, and more. That way, I don’t need to keep everything in my head. 

I also mediate in the mornings to reduce my anxiety and calm down. I don’t have control over my diagnosis, but I can still control my mentality. Telling myself to take it one day at a time makes me relax and focus on the present, rather than being anxious about the future. I hope this advice helps others who are going through a similar situation.