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!
Expert tips for improving the MRI experience
If you're anxious about being in the tube ask the technician to talk to you between scans. Some scans are as short as 15 minutes while others can be as long as an hour and a half. I feel better when know what to expect. Also, they can hear you talking while they use the intercom.
I know who I am, do you?
Maybe I'm projecting a considerable amount of self-confidence that asks, “That's right—I know who I am. Do you?”
Top 5 things driving me crazy about cancer (right now)
Being treated like a patient by my friends or family. It's OK, I really can fetch my own glass of water. I don't need help standing up. I can bend and pick up that thing I just dropped. I can walk up the stairs without assistance. Things I do want help with: walking in the dark without my glasses and going down stairs.
Sorry, but I'm not a sellout
I refuse to edit what I say on this blog in order to get “sympathy money” from people, and if this pisses you off, unsubscribe from the The Liz Army email list and stop reading this blog. Because fuck you.
Explained weight loss
Just to be clear, a large chunk of my weight loss is due to the following factors.
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.
I heart Kaiser Permanente
HMOs have a bad rap and I'm setting the record straight. Here's why I chose Kaiser Permanente for my medical needs at age 25… and at age 29, here's why I know Kaiser was the best decision I ever made.
Driving again after seizures
I didn't think too much about driving until early March, when I suddenly felt an overwhelming urge to have my independence back. Who wouldn't feel this way? I'm surprised I lasted this long.
Why didn't anyone tell me how I would feel?
Chemotherapy week was not so bad. I experienced mild nausea Monday through Thursday, but life sucked Friday and Saturday, and I was still nauseated on Sunday.