Looking back, my symptoms started as early as age 10. I lived in a heightened state of anxiety, and every day stresses seemed to be getting gradually more unmanageable. I didn’t know what was normal, so I just figured that was what growing up felt like. Over the next couple years, things progressed. Along with experiencing my first real panic attacks, I started having brutal headaches triggered by exercise. They’d be severe enough to drop me to my knees and would often be followed by sweating and vomiting. After a few trips to various doctors, they decided that I had anxiety and migraines. I was medicated and felt relieved that they had finally figured out what was wrong with me. They learned they were wrong when at the age of 13, going under anesthesia for the first time during a minor operation, my blood pressure spiked to 250/150. After their initial shock subsided, everyone started to put the pieces together. They found a 5cm and a 2.5cm paraganglioma in my abdomen, and after a long and careful surgery, I got my life back again.
I was assured that these were a one time thing, and that I wouldn’t have to worry about them again. I went on with my life, found something I was passionate about and built a career around doing sound design for video games. Around the age of 29, things were slowly getting harder again. My tolerance for stress was lowering, I was having all sorts of new unexplained symptoms, and my weight was slowly dropping. I mentioned para to a doctor in the area, and he said it wouldn’t be worth screening for since my blood pressure wasn’t elevated all the time. When I hit 30, my body had become totally unmanageable and I knew without a doubt that the tumors were back. I demanded that they test me again, and a week later had the results I feared more than anything.
I don’t think I’ve ever felt as alone as I did in that moment, sitting in a state of pure panic and uncertainty. Unable to function in the high stress environment of my work anymore, I left my job in Washington state and moved back to the SF Bay Area to pursue diagnosis and treatment at UCSF. A month later the endocrinologist told me they had found recurrence at the original tumor site and metastasis to the L3 vertebrae. 7 months and two surgeries later, including an exploratory abdominal surgery and a full removal of my diseased vertebrae/fusion of the lumbar spine, I was trying to live a normal life again. This time it was impossible to get back to the way things were. The uncertainty surrounding my future and the mistrust in my body were a constant source of anxiety. I was less able to tell what ‘normal’ was supposed to feel like and every wave of anxiety had me convinced that the tumors were back again.
I slowly learned to live without knowing what was around the next corner, and made more space for my anxiety. I did things that I had mourned as being lost forever after the metastatic diagnosis, finding love again and starting work at my dream job. I feel unspeakably grateful for having the time to do these things after getting a reminder of how fragile life can be. A few months ago, at the age of 34, my last pet scan showed that there was recurrence of the tumor in a few areas around the last surgical site. Things look stable for now, but I know it’s something that I can’t outrun. In the meantime, I love my life and will enjoy every moment of it that I can. To everyone dealing with this or caring for someone who does, I love you and hope you know that you’re far from alone. To any zebras in the SF Bay Area, I’d love to meet you!