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!
Mark Miller
There's this guy I met at the UC Davis brain tumor support group, Mark Miller. He was there to make a presentation on managing health with technology – and Mark had brain cancer too.
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.)
MRI looming and I’m just happy to be alive
At work today I ran into a woman I rarely see around the building. She said, "How are you liking it here?" And I said, "It's great!" And she said, "Well, you sound happy!" And out of nowhere I blurted, "I'm just happy to be alive!"
Sunshine and rainbows
Seriously, I am seeing things in a new light. Maybe the "I am just lucky to be alive" bug got to me.
New regime for anti-seizure medication
What would you rather: Have out of body experiences due to seizures, or have out of body experiences due to your seizure medication? I just can't really tell the difference some times.
