Back in 2014, life was pretty good. My husband and I had moved to the United States from Germany for work reasons four years before. We got married on a cold but beautiful winter day in NYC in January 2011. Although working a lot, we both enjoyed life by traveling and jumped on every single opportunity to explore the beautiful country we chose to live in. A year after we got married, we bought a house in Morris County, NJ, and another year later, our beautiful baby girl Clara was born. Again, life could not have been better.
But all of that changed in a heartbeat, when in the middle of the night, on April 29th 2014, I had a seizure. My husband called the ambulance, and I was rushed to the hospital. A scan soon revealed a mass in my head. Only one day later, I found myself surrounded by a team of neurosurgeons discussing open brain surgery.
I did not want to host a tumor inside of me, so I agreed to the procedure. Suddenly, I had to write a will and get an advanced directive—both things that I never in my wildest dreams imagined having to do that young in my life, especially with a 5-month-old baby.
It took a couple of weeks after surgery for the pathology report to come back. One reason was that the grading of my tumor was not clear, and the mass had to be sent to a different, more specialized laboratory in NYC. When we finally got the result, I was diagnosed with a primary brain tumor called Astrocytoma, grade II – III. I knew already, that in total, there are about 120 different types of primary brain tumors. And that an Astrocytoma was not the worst, but also not the best type to have. The tumor was about the size of a golf ball, located in my right frontal lobe. This is the part of the brain where the problem solving, spontaneity, memory, language, initiation, judgment, impulse control, and social behavior resides.
To this day, I still have some impairments surrounding some of the above mentioned functions (though most people do not notice…).
But I was not done fighting (and unfortunately, never will be). About three months after my craniotomy, I had 30 sessions of daily radiation to my brain—receiving a total of 60gy. For one month following the “brain frying process”, as many call it, I got to rest and recover.
Again, treatment was not over yet. I started a full year of oral chemotherapy. This was needed in order to poison the little, invisible cancerous cells left behind. The year of chemo was a rollercoaster ride: I had good days and bad days, many ups and downs, many tears cried and milestones celebrated. I received chemo five days per month, then rested for the following 23 days. Side effects included fatigue, joint pain, nausea, and more fatigue (the nausea was bearable with anti nausea medications).
I really slept a lot in those twelve months. Sleep is the only time when the brain of a person with a traumatic brain injury heals. Doctors cannot just put a cast around it as they would do with a broken arm or leg. In addition, it takes much longer for a brain to heal than any other organ. Science speaks of years as opposed to weeks or months.
Fast forward to today—I am doing pretty well again. I got used to my bad memory (and hope others did too ;-)), and after two years, I finally got my energy back (I’d say about 75%). I enjoy life even more—a very common side effect once being faced with an incurable illness. I learned how to live with the constant fear of a relapse and scanxiety (the anxiety before my quarterly MRI scans). My neuro oncologist is very happy that they have been stable so far, and so am I!!!!
When active treatment was over, I made the very difficult decision to quit my career and dedicate my life to the brain tumor community. I raise awareness and funds, became a Stanford Medicine X ePatient in 2015, and joined multiple (young) adult cancer and brain tumor organisations as a volunteer. I give talks, sit on panes
Yes, I could be healthier. But I was never happier than I am today!