Patient & Researcher Blog
Here I aim to capture what I am learning as a newbie researcher from a patient perspective.
Living with a slow growing brain cancer
It is taboo for researchers to talk about their work before it is published.
I think that’s a bummer.
My favorite part about research is learning new things in real time. Here I share my observations as a learner and my n of 1 (personal) findings as a patient.
Note: I started blogging about brain cancer in 2008, at age 29.
I had no background or knowledge about healthcare when I began. Please excuse typos and other misconceptions. What you read here is me in real time, like a time capsule.
There are more than 500 posts here. Use this search to look for something specific. Good luck!
Holy shit: nearly five years since first seizure, happy birthday to me
I never want to be a woman who hides her age. Every year I am older is another year I am alive. I am living with this disease.
Eric Arons
I don't know why he popped up in my mind this week, but he did. I checked out his Facebook page and noticed all the recent posts were of friends posting well-wishes on his page. He wasn't writing anything. Photos appeared of him with friends... except instead of him playing disc golf, he was in a wheelchair.
Redefining the support group: my TEDx talk
Liz Salmi, a patient advocate, talks about her decision to be open and share what it is like to live and blog about living with brain cancer in 2013.