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!
Permission to live: Advocacy burnout
A few months ago I started to wonder if I should be doing all these things I am doing in the brain tumor community. Through this work I am fighting and fighting and fighting. I have been fighting since July 2008, and all of this fighting has taken a toll.
Expressing survivorship as an athlete
This experience, where I learned to love something I never knew I would be interested in and be good at it, has made me realize that there are millions of things in the world that I have never thought about… and I might love and be good at. I am so lucky to be alive and have the time and curiosity to search for these things and find my purpose in this world.
Tied for worst feelings ever
Tied for worst feelings ever: People assuming you beat cancer when you haven't, and reminding people you still have cancer and making them cry.
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.
This is not a death sentence
To those of you diagnosed with a brain tumor–malignant or otherwise–for the love of god (or whatever you believe in), don't tell yourself the diagnosis is a death sentence. Be as negative as you want. Dread the biopsy. Freak out about the brain surgery. Get sick of chemo. But don't tell yourself this is death sentence.
Beyond my cancer diagnosis: Where do I go from here?
I look at people on the scene: the newly diagnosed, the people in treatment who are just finding their voices in the brain tumor world. I wonder if it is their time to share their stories, and time for survivors like me to take a step back.
Should a 32-year-old with brain cancer save for retirement?
Should one save for retirement when they have an incurable form of cancer with a high mortality rate?
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.