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!
Each moment is bittersweet
“Are you ever afraid that one day I will be dead and you wish you cuddled me more?”
If only I got a dollar for every brain cancer scam on the Internet
If he was really concerned about the health and safety of his co-workers he could have said he'd read an article about this thing called cigarettes and that they've been proven to cause lung cancer.
Can chemotherapy mess with your hair’s ability to regrow?
All the bad crap in your body comes out at some point or another, and it often leaves through your hair
What art can do to us
With cancer I think about death more than I did before, and when faced with situations filled with extreme beauty and emotion I breathe in each moment knowing it may be the last time I experience it. The Rothko painting was a special moment for me. I don't want it to be my last.
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.
What is making me dizzy? The inner ear or the parietal lobe
After my alarm went off I got in the shower, dizzy still. I held myself up with the walls. I leaned on the counter as I brushed my teeth. I wrapped myself in a towel and watched Brett do his morning push-ups.
Needle pricks and scar tissue now permanent
Does anyone else have permanent scars from all the blood draws?