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!
Note to self: Preparing for 4th Brain Surgery
If it’s too hard to use your right hand, use your left. If it feels really hard today, you are making progress for tomorrow (it gets better and you get stronger). Don’t be sad at what you lost, because you are rebuilding, always becoming something greater than before.
How the rest of the medical community deals with cancer
My primary care doctor sent me to see a new physical therapist for a back muscle injury. The therapist looked at my medical chart. Then he looked up at me. Then back to my medical chart. Then to me.
My new job is cancer
It was near the end of this grieving when I realized I wasn't jobless, I just have a new job—one that will change my life forever, leaving me stronger for it.
“Creepy? I'm a neurosurgeon, it's my job to look at this stuff. The fact that you have it on the Internet is what's scary."
I said, “This may sound creepy, but I have a photo of my incision two weeks after surgery while the stitches are still in it. It's on the Internet, I could show you.”
“Creepy? I'm a neurosurgeon, it's my job to look at this stuff. The fact that you have it on the Internet is what's scary."
Possible damage to the motor strip
He's worried that if we get too close to my motor strip it will create neurological damage that could inflict some level of paralysis.