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!
Brain tumor advocacy in full swing: it's time to educate Congress
There are people who are mortgaging their homes just to get their kids the Temodar they need. Some people are skipping their treatment and using it only every other month.So you can imagine what a blessing it would be to brain cancer patients everywhere if our chemotherapy was treated the same way as chemo for every other cancer patient. For reasons unknown to me, we are being discriminated against, and this is not OK.
Changing careers during brain cancer
The one thing truly holding me back was the cost of health care, and worrying about the 90 days it takes to qualify for the new employer's health plan.
Quoted in The Health Care Blog
Woah! Check me out... I was quoted in a story in TheHealthCareBlog.com. My part is near the end of the article... but you should read the whole thing.