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!
Nothing else will be scary again: my goal for 2015
And here I am, making a conscious decision to do something that takes eight months of commitment--eight months of training to do something intimidating, and awkward, and difficult. But I can’t say it is scary because I told myself six years ago that nothing would be scary ever again.
What matters most to you in the end?
No matter what you believe, Brittany Maynard got us thinking... A lesson we can all take away from Brittany's decision is that it is important for everyone to think about what matters most to us "in the end."
I wish Brittany Maynard had met other 29-year-olds with brain cancer
I have known people who have died from brain cancer, and I know people who are still living with this disease. I wanted to tell Brittany to wait it out--you don't know how fast these things will bring you down. I wish Brittany gave herself time to meet other people like herself and to find out what life can be like for a 29-year-old with brain cancer. But who am I to tell a stranger what to do?
My world is on fire
I was angry about people who are angry about the lack of "awareness" for brain tumors. I get angry that people think our disease is slighted for some reason. The truth is, there are things you can do and you just need to get out there and do something. Let me know if I need to write another tutorial.
Emily Morrison
“Whatever you're doing today… Take a minute for me,” she wrote. “Now put you’re heart in it and do it better.”
Seizure drugs: Where is our jetpack?
By the way, no matter who you are, or what you do, someone will always be older than you and will be able to get away with belittling your minor neurological deficits.
Feeling the love
July is just around the corner and that means it will be my birthday soon. I will be 35, and I say that with great pride because getting older in this uncertain world (i.e., living with an astrocytoma) means appreciating every day.
Epic adventure awaits
And if my next MRI shows tumor growth I can say, "Well, I am sure glad I took that crazy trip to Japan."
Where I am at, in my head
Check out this amazing (noun) who was diagnosed with (part of the body) cancer. They were on (type of treatment) but it didn’t get them down! No way, no how! They are so (adjective) that they signed up for (type of running activity) and completed it. You should be inspired!