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!
That feeling when your radiologist and oncologist disagree…
He seemed freaked out. I could tell by the look in his face. He felt compelled to hug me and let me know that "a lot of people are thinking about you, and care about you. Be strong."
Will this EEG determine once and for all if I have having increased seizure activity?
As long as knives aren't involved, I think it is cool to learn as much as possible about my brain. I've had pictures (CT scans and MRIs), and surgeries (tissue samples), but now I get a graph!
I honestly can’t remember how many months I’ve been on chemo
I am supposed to start another round of Temodar in about a week, but I can't remember how many months I’ve been on chemo.
A recent interaction between the neurologist and me
During these spells the world looks as though I view it in a fisheye camera lens, and I feel like things are far away. I am clumsy and confused about the location of my body parts. And even if I am looking at my hands they feel foreign.
Can you be a survivor when you are living with cancer?
If you die from cancer you shouldn't be labeled a "non-survivor".
If you had migraines you’d know it
Why do people feel the need to show off by saying their situation is worse?
The difference between a seizure aura and a partial seizure
A partial seizure would cause me to feel some sort of “ants marching up my arm” sensation, also known as a Jacksonian march. But this was more of a "world spins sideways and time slows down" sensation.