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!
MRI tones seem to organize into a waltz-like rhythm
Anyone who has been subjected to the monotonous volleys of noise from the oscillating magnetic fields that bombard one during an MRI has probably had a similar experience. Sometimes the deafening ticks of the machine seem to organize themselves in a waltzlike rhythm or threes, sometimes in groups of four or five.
A good excuse to watch movies all day
I'm experiencing the aftermath of my latest round of chemo. My body feels like all of these things are happening at once…
Disney’s MRI is a lie
According to a recent brain scan taken at the "What's Inside Your Head?" kiosk at Disney's Tomorrowland, it looks as though I have no abnormal brain tissue. This either means I'm all better or Disneyland is a liar.
There will be seizures
So now it's just down to me and 3,500mg of Keppra to fight the good fight.
This is your skin on drugs
Between the neurologist and the dermatologist they realized my skin was photosensitive and that I need to wear burly sunscreen—SPF 55+ that shields from the UVA and UVB spectrum.
Radiation side effects
I don't care about seizures, brain surgery, chemotherapy, MRIs, or frequent blood draws, but the thought of radiation makes me feel like I really have cancer. No jokes; this is for real.
Evidence of symptoms
I can't believe what I am reading. It was the me I was a year ago asking the nurse about symptoms I now know were due to a brain tumor.
Task number one: save your life
I've read many books and articles written by people with cancer about the day of their diagnosis. The stories are emotional and dramatic, but I read these accounts like an outsider because I didn't have that kind of moment.
Graphing test results
Another reason I like Kaiser: I can make custom graphs from their Web site based on previous test results!