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!
Piano as occupational therapy
Piano was my first instrument and I can still read music, but I haven't played in nearly a decade. If I practice everyday, I bet the fine motor skills in my right hand will improve—hopefully to the point where I can play without looking at my hands.
Fleeting thoughts from the last 2 weeks after neurosurgery
I was told that if I had this surgery I would experience physical impairment to the right side of my body due to the close proximity of tumor to the brain’s sensory and motor strips. The severity of impairment could vary, but the worse case is paralysis.
The jerk who takes the handicap spot
If there's one thing Brett and I both passionately hate, it's jerks who park in handicap spaces without a proper license plate or placard. I've always known that this was a stupid-ass thing for people to do but I never paid much attention to who parked in the H-spot until I dated Brett.
I choose to feel good
If we can make ourselves feel bad for any reason (physically or emotionally), shouldn't we then have the same power to make ourselves feel good for any reason?
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.