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!
The birth of the brain tumor hashtag on Twitter (and how it was inspired by the breast cancer community) #btsm
The birth of the brain tumor social media hashtag on Twitter, in all its glory.
To have a slow-growing brain tumor
"But really, aren't there cases when grade twos just stay a grade two forever?" I implied that with my youth, health and intelligence, someone as awesome as I must be spared from this injustice.
In reality, everything is terrifying
Frankly, it is embarrassing to admit this weakness, but maybe being honest about my moments, with what could be defined as "depression," will mean something to someone, somewhere. I figure, if we're all so much alike, maybe you'll understand this too.
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.
Talking about median survival time with friends
My friend's reaction reminded me that most people don't know the scope of my diagnosis. I think it is best to keep the details here, on this blog. It is a positive thing for people to be proud of their friend Liz, a "brain cancer survivor."
Changing careers during brain cancer
The one thing truly holding me back was the cost of health care, and worrying about the 90 days it takes to qualify for the new employer's health plan.
