Spoiler alert, I'm still alive: 10 years later

This note is part of my medical record. It was written by a physician who saw me in the emergency room on July 25, 2008.

Today marks ten years since my first seizure.

I don’t subscribe to the “gift of cancer” theory that permeates our culture. However, as I look back on the last ten years, I cannot deny how my experience as a person living with a brain tumor has shaped me in unexpected, touching, and sometimes thrilling ways.

Brett and I had only dated for a year and a half when I received this diagnosis; our love story and relationship is now rooted in resiliency. We’ve responded to every emergency thrown our way over the last ten years with the mindset of, “We’ve seen worse. Let’s do this.”

Brett and I in the hospital after my first seizure in 2008.

In 2008, I was a Kaiser Permanente patient. Today I receive my care at a major academic medical center on the west coast. The cost of my care has increased due to a change in health insurance plans in 2017. TL;DR: I really miss Kaiser.

After surgery and during treatment my MRIs were every other month. Today my scans are spaced at every nine months. Due to the cost of these scans I volunteered to participate in an imaging study at UCSF. I begin next month (August 2018). Being part of this study means my MRIs will take about three hours but I won’t have to pay for scans. Also, it feels good participating in research.

Brett still has as much scanxiety (scan-associated distress) as he did back in 2008. I’ve been feeling well; seizures are under control with medication; my anxiety about this brain tumor stuff is low most of the time, although when I hear about other long-term survivors having tumor progression I realize I am not invincible.

In 2008 I was a digital communications nerd with an associate’s degree in graphic design. I never would have predicted that today I would be using my background to now influence design and communication in healthcare through my work on OpenNotes. I never would have thought I would be working for a major academic medical center with an email address ending in “harvard.edu.” I never would have thought it would be even possible to be funded as a “patient researcher” on a stakeholder engagement project investigating integration of early palliative care for patients and families facing glioblastoma. None of this seemed within my realm of possibilities. And yet here I am.

I have had a brain tumor for one quarter of my life. I am the same person I was before but I am completely changed.