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!
Spoiler alert, I'm still alive: 10 years later
I have had a brain tumor for one quarter of my life. I am the same person I was before but I am completely changed.
How I chose my new neuro-oncologist
The doctor’s job is to make sure I receive good care, not be my best friend.
Braces and brain scans: straightening your teeth with brain cancer
Us MRI Elite are told to complete a form asking about all metallic objects that may be hidden in and around our body before we have each scan. There are about 30 standard questions, including: Do you wear a pacemaker? Do you have a shunt? Do you have any metal plates or screws in your body? Do you have any metal fragments in your eyes? Have you ever worked with metal objects? Have you ever attended a Slayer concert? (Not really, but imagine that!)
Four months at a time: living between brain scans
I feel bad blogging about fear and freak outs because it makes me sound like I get down on myself. This isn't true. I just happen to own a space on the Internet where I am allowed to tell the world that living with a slow-growing brain cancer can be scary sometimes.
If I survive this brain surgery I am going to be a genius
“That which does not kill us makes us stronger.” – Frederich Nietzsche. It that’s true I am going to be a fucking genius.
My brain: 16 months after Temodar
Hallmark is seriously missing out on the "thank you for saving my life" card genre.
MRI one-year post Temodar chemotherapy
Since I am psychic, and have answered a million questions about brain scans, I am going to answer all the questions I know you have.
Surprisingly, no pre-scan jitters this time
Dr. L., asked if I would be OK having one of those super long MRIs... the kind that last for over an hour... Since I am a big fan of scans and medical procedures I said, "Hell yeah!" He already thinks I am crazy. Big long scan. New doctor to scrutinize my medical history. Should be interesting.
Changing careers during brain cancer
The one thing truly holding me back was the cost of health care, and worrying about the 90 days it takes to qualify for the new employer's health plan.