Patient, researcher, student blog.
Living with a slow-growing brain cancer.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
A note about my oldest posts: I began blogging about brain cancer in 2008, at age 29. I had no background or knowledge about healthcare when I started. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
Defining enthusiasm
I've lobbied Congress on chemo drug parity. I helped start a Twitter community for people with brain tumors. I changed my career to put me in direct connection with leaders in health care. Immediately after my dad's diagnosis I enrolled the two of us in a familial study of gliomas. I obsessed over the release of the 2016 WHO Classifications of Tumors of the Central Nervous System. I declared to anyone who gives a shit that "I am the open source patient," and I am happy to share my personal health information if it would possibly give a researcher a leg up in the study of this disease.