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!
My self-assessment of “handedness”
From what I have learned, true ambidexterity is incredibly rare, so I am likely better labeled as mixed-handed, or a person that can do things with both hands but favors one hand or the other for specific tasks.
Fun neurological terms of which I am now aware
My new, minor, afflictions give me a greater sense of understanding, and extreme compassion, for those who deal with neurological issues on a greater scale. Here are some concepts of which I am now aware thanks to my neurological condition.
Email from the neuro-hospitalist
Your personal involvement and commitment to your illness and care are remarkable. Keep up this level of interest and enthusiasm to be sure that you optimize your care! ... Great to see you and I wish you all the best!
Post-operative rock out
This is 36 hours hours after brain surgery. I taped this as a nurse was changing the sheets in my bed.
An email from my recent boss
I’m so glad you were able to come back and work the past two months. It’s been great having you there and I am very hopeful we can work it out for you to return. You are very talented and are a great asset to our team. I look forward to seeing you soon and, even better, collaborating on new work.
The rubber band technique for stopping a seizure
I thought you'd like to know I discovered that snapping a rubber band on the back of my wrist will cure hiccoughs. I was able to test this out two times over the past week and it worked immediately.
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."