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!
What I wish I knew before my brain was diagnosed with cancer
The most frustrating part of cancer is that it doesn’t discriminate. Cancer doesn’t care for whom you voted, or to which god you choose to pray. Some of the most controversial matters humankind wastes our time fighting about are rendered meaningless in the face of a disease like cancer.
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.
Special certificate: brain cancer
A cancer-versary is like an award. I wish I could add "cancer survivor" to my LinkedIn page right after the section about Honors & Awards. Or maybe I can add it to the section about special certificates?
Brain tumor awareness: you are doing it wrong
As people passionate about brain tumors, we can shout about the existence of brain tumors until we are blue in the face, but without follow-up actions an “awareness” campaign falls flat and leaves patients and families feeling hopeless.
I can do a push-up: Hitting a fitness milestone
If life is short, and if my tumor grows back, it is worth having made myself as strong as possible before I start treatment again. It is worth feeling good in my own skin, especially if I only have a short time in this skin.
Zero shades of gray: Who's to blame for lack of brain cancer awareness? (CureToday.com)
Can you imagine Kitchen Aid selling a $350.00 Artisan Series stand mixer for our cause? Delta Airlines inspiring research dollars for painting an airbus gray? An NFL referee drawing attention to the disease by dropping a gray flag? Because I can't. Even brain tumor nonprofits don't even bother asking us to wear gray during fundraising walks and events.
Open thread: What does "supporting a cure" for brain cancer look like to you?
To me "supporting a cure" is being an advocate with the National Brain Tumor Society. I enjoy public policy and am a fan of the West Wing (which qualifies me to talk to Congress) (not really), so being an advocate is how I am supporting a cure.
What would you say to the most influential people in the brain tumor community?
I am struggling with what I should say. I don't want to preach to the choir. They already know we need more money for research. They know oral forms of chemotherapy aren't equally covered by all health insurers. They know there are more than 130 different kinds of brain tumors and that brain cancer is the #1 cancer killer in children.