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!
Seizure drugs: Where is our jetpack?
By the way, no matter who you are, or what you do, someone will always be older than you and will be able to get away with belittling your minor neurological deficits.
Traveling with brain cancer and epilepsy
When in Rome, take your anti-seizure pills on local time.
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.
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!
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.
I might have nystagmus
The worst case scenario you could have in this situation is a brain tumor.
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.
