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!
Can you be OK with the unknown when you will have cancer for the rest of your life?
People talk about how tired they are and I want to smack them upside the head and say, "You think you're tired?" But I restrain myself. And I'm cool with that.
I accidentally self-titrated to a lower dose of Keppra, and I feel good about it
I told myself I'd be super careful with the seizure meds because... who wants a seizure? But deep down I've often questioned the reasoning behind what I was prescribed.
Trying Depakote
All of this is great if the tremors go away, but I have been on the new drug for a week and I still have tremors--and they are weird. It almost feels like I've had way too much caffeine and I am shaking with excitement, but I am not excited, nor do I have extra energy.
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.