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!
Do all diseases have t-shirts, or is it just cancer?
Do people with other diseases roll their eyes when they see us cancer people running around with our "cancer pride" shirts on?
“You know how to do this better than me by now”
I e-mailed my neuro-oncologist to remind him to check my lab work and refill Temodar, Emend and Kytril.
Hemispatial neglect for mixed-handed people
Both hands are equally skilled or equally awkward.
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.
Parietal lobe damage: One side feels different from the other
I hate that with every odd thing that happens I immediately trace it back to being an issue with my brain tumor.
Legit controlling my body with my thoughts
When I control my body with thoughts I am at my most powerful. I wouldn't have realized this if it wasn't for brain cancer.
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."
