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!
The diagnosis & plan: grade 2 astrocytoma, radiation & temozolomide
I still have a grade 2 astrocytoma. This is great news, however if the last few months tell us anything, despite pathology and all the science my tumor is not behaving like other grade 2 astrocytomas. This is what continues to worry us but we take the positive and move forward.
Can you be OK with the unknown when you will have cancer for the rest of your life?
People talk about how tired they are and I want to smack them upside the head and say, "You think you're tired?" But I restrain myself. And I'm cool with that.
Radiation side effects
I don't care about seizures, brain surgery, chemotherapy, MRIs, or frequent blood draws, but the thought of radiation makes me feel like I really have cancer. No jokes; this is for real.
Cancer treatment for dummies
As a matter of fact, the World Health Organization only recently classified cancer as "chronic disease," like diabetes and or stroke. This may still sound like a crap sandwich, but it sure beats the previous classification as a "deadly disease".