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 Wrote This: “Deciding on My Dimples” for the New England Journal of Medicine
A Perspective I wrote about shared decision making during awake craniotomy (brain surgery) was published a few weeks ago in the New England Journal of Medicine (NEJM). I am over the moon excited. From concept to publication, it took eight months for this Perspective to be published in the journal.
I am the population now: The tale of a brain cancer “n of 1”
There exists no population-level evidence that taking the drug for that length of time is beneficial to the overall survival of people living with my disease.