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!
Virtual visit with my dad's neurosurgeon
Because I am a curious person (and have learned that my dad is also a curious person), I asked the doctor if it was a good idea to get a biopsy of the tumor. The surgeon said that they could do a biopsy, but other than satisfying our curiosity, what good would it do? It might do more damage to him than good. And while we are curious, we should weigh our options on what matters most... Which to me (and hopefully to my dad) means quality of life.
A cranky primer on treatment for brain cancer, including a shoddy explanation of clinical trials
I was like, “What the hell? Write it all down? Who do you think I am, a person who just writes shit about brain cancer stuff?” And then I remembered I am a person who writes shit about brain cancer stuff.
Living is hard work
Was she right? Or was she wrong? Could someone so healthy have an opinion like that? Or was her positive attitude the right way to go?
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.