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!
Why your health insurance requires prior authorization for some medications
If a person like me can have trouble navigating the complicated nuances of health insurance, prior authorizations and payment, then how can we expect people who don't come from "a place of privilege" to manage their health care?
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.
Each moment is bittersweet
“Are you ever afraid that one day I will be dead and you wish you cuddled me more?”
Have you heard of temporal lobe epilepsy and déjà vu?
What creeps me out about the déjà vu is that I have heard it is often an aura for temporal lobe epilepsy. My tumor is in the parietal lobe, but the parietal is right next to the temporal lobe, and if my tumor were to ever spread, it could, theoretically, spread to the temporal lobe.
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.
