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!
Lift with your head: the other 90% of my brain
I strongly believe in the power of advocacy as an important role in brain tumor survivorship. But advocacy only stimulates the 10% of my brain. There are many other parts of our brains--parts controlling crucial functions like heartbeats, muscles, balance, movement, the respiratory system, etc.--that require stimulation and use. That is the part of my brain I am just now starting to put to use and challenge for the sake of healing.
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.
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.
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 might have nystagmus
The worst case scenario you could have in this situation is a brain tumor.
Photos: My brain as of May 21, 2009
Fortunately, neurons in other parts of my brain wanted to help me and they are currently rewiring themselves to pick up the slack.
I have plenty of neurons left
I always heard we use just 10% of our brain. Now that my brain has a missing chunk it appears my brain willl take advantage of the neurons I didn't use before. I have a feeling that by the end of all this my brain will be more efficient than ever.