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!
How I chose my new neuro-oncologist
The doctor’s job is to make sure I receive good care, not be my best friend.
Erin: founding member
But in the spirit of Erin and her outright frankness, I feel it is my duty to admit that she will be next, in a line of amazing people I've known, to lose their life to a brain tumor.
Dreaming about my friend’s brain surgery
My friend Erin is having her second brain surgery on Wednesday and last night I had this dream.
I honestly can’t remember how many months I’ve been on chemo
I am supposed to start another round of Temodar in about a week, but I can't remember how many months I’ve been on chemo.
Taking a break from temozolomide
I am fortunate to be in a position to take a break. I don't remember what a normal body feels like. I know everyone is tired after a day of work, but it is serious work to stay motivated to go on a walk. (Brett keeps me motivated.)