
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!
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.
Right after brain surgery
This was me approximately two hours after brain surgery in February. I was awake but pretended to be asleep for a dramatic effect. I even fool myself.
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.
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.
Possible damage to the motor strip
He's worried that if we get too close to my motor strip it will create neurological damage that could inflict some level of paralysis.
My neurosurgeon’s recipe for salad dressing (not kidding 😂)
I have to be honest. The idea of this salad, especially the part about canned salmon, did not seem appealing. But from everything I've read lately about nutrition this salad sounded like the epitome of “brain food.” And it was even more convincing coming from a neurosurgeon.
Top 5 Things that are Cool About Brain Surgery
If you have to have brain surgery you might as well bask in a few weeks of love and awesomeness. Here’s my personal top five list.
Top 5 Things that Suck About Brain Surgery
If you have to have brain surgery, here are a few things you should know in advance that might make the experience less than pleasant.