In Honor of Brain Tumor Awareness Month: A Brain Tumor Story
May is Brain Tumor Awareness Month, represented by the color gray. So in honor of Brain Tumor Awareness Month, I want to share a brain tumor story (with permission).
When I was 7 years old, I was rushed to the hospital, unconscious, with what would later be diagnosed as a pilocytic astrocytoma. A nearly 6cm x 6cm mass occupying a significant amount of space in my cerebellum and obstructing the outflow of cerebrospinal fluid from my brain, leading to the development of severe hydrocephalus. Severe enough that the increased intracranial pressure was trying to force my brain down and out of my skull, leading to the development of what is known as Cushing’s Triad. The irregular breathing that is one of the three components of the triad are what cued my younger brother to call to my parents and helped save my life.
An emergency ventriculostomy, 3 operations, a VP shunt, and 3 weeks later, I was able to walk a lap around the hospital, and was discharged home to recover and adapt to an entirely new perspective on life. Narrowly escaping death changes you, I guess. Even when you’re a few weeks shy of your 8th birthday.
I spent 2 of those 3 weeks in the Pediatric ICU at UCSF. That’s where I decided that I wanted to become a physician, and pay forward this gift of a second chance at life.
I could never forget the little corner of the ICU that I occupied. Those halls where I spent days trying to relearn how to walk. The place that would shape the entire rest of my life.
Fast forward 21 years, and I’m an emergency medicine resident back at UCSF. Getting to train to save lives back in the hospital where mine was saved will forever remain one of the greatest honors of my life.
During our 2nd year of emergency medicine residency, we spent a month rotating as the resident on the Pediatric ICU, or PICU. At the time, UCSF was building an entire new hospital building in Mission Bay which would house all of the new pediatric care inculding the PICU, so I would be in the last class to rotate through the old PICU.
The move to the new hospital was scheduled for February. When I got my schedule for the year, I saw that I was scheduled for my rotation in December. I’d rotate through the same ICU where I was a patient. I was anxious at first. I didn’t want to tell anyone my story. I was worried how that might be perceived, and I didn’t want to be viewed or treated any differently than any of the other residents.
On my first day as the admitting resident, the Pediatric Critical Care Fellow came over and told me that my first patient was being flown in as a transfer from Reno — a teenage girl with a newly diagnosed brain tumor.
The radiologist at the other hospital had interpreted the tumor as originating from the pineal gland. When the patient and her mother arrived and we loaded the scans, I looked through them over and over again.
We didn’t typically have our radiologists over-read the interpretations from other hospitals, but I called the radiology resident to ask if he would look at the CT scan.
“I don’t know how to explain this to you exactly but I feel like I’ve seen these images before,” I told him. He looked through the images with his attending and agreed that the tumor was actually cerebellar, but was big enough to be pushing up to appear to originate from the pineal gland. I can’t really describe the feeling of that moment. A weird sense of hitting too close to home.
I took a moment to collect myself before I walked into the room to talk to the patient. I told her worried mother that while we didn’t know exactly what her treatment course would look like, I was confident that her daughter was absolutely in the best place to be treated.
I wasn’t planning on explaining why I had such confidence in this hospital few others might know as deeply, but when I turned around at one point, the astute teenage patient asked “Can I ask you a personal question? What’s the scar on the back of your head?”
I sat down. Choked up. “Because at one point, I was sitting right where you are now, in this same ICU, possibly with the same kind of tumor that you have.” We all cried a bit as I explained that I would be there all month and walk this journey with them.
I cried a lot of tears that entire month. Not everything went as smoothly for her as they had for me, not that my road was necessarily easy. She had more difficulty getting back to walking, requiring crutches for months before regaining enough of her sense of balance.
So I was thrilled that a couple months after she was discharged that I got to walk a 5K in Golden Gate Park with her for the National Brain Tumor Society as she had mastered her crutches.
Addendum:
That teenage girl is now a young woman who is going to be heading to nursing school, and I’m incredibly proud. She will always be one of those patients whom I carry with me — a “footnote” that I am honored to be able to add to my story.
Footnotes reference: https://tnicholsmd.medium.com/the-footnotes-of-a-life-in-medicine-1afedf9fe6f2
