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!
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?
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.”
Lobbying with my emotions: brain tumor advocacy is conjuring up all kinds of dirt
I have no idea if my father is 'proud' of me, but in my mind he has no right to be proud. Because nothing of who I am reflects on him, his skills as a parent or of who he is as a person. Pride is feeling good about something you did. He never did anything, and he certainly never reached out during my entire cancer process. I never got flowers. I never got a card. He didn't come to my wedding.
Creating a positive cancer environment: Stupid Cancer rocks the house
Probably the most amazing moment of all was on the first night I was there. There was a kickoff event in a nightclub for all the young adult cancer survivors and halfway through a beautiful young woman walked up to me and said my name. It took me about five seconds to realize I was looking at Emily, a young brain cancer survivor I met 10 months ago via my blog.
The young adult cancer movement is going to Vegas
Then I explain that I am not going to see any shows. I don't drink or gamble. And I am there to attend a summit for young adults with cancer. I tend to bum people out a bit.