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!
Virtual visit with my dad's neurosurgeon
Because I am a curious person (and have learned that my dad is also a curious person), I asked the doctor if it was a good idea to get a biopsy of the tumor. The surgeon said that they could do a biopsy, but other than satisfying our curiosity, what good would it do? It might do more damage to him than good. And while we are curious, we should weigh our options on what matters most... Which to me (and hopefully to my dad) means quality of life.
Dear everyone with an oligoastrocytoma: Your diagnosis just changed
As more and more pathologists and doctors begin treating patients based on the genome of their tumor it only makes sense for the WHO to update their classification of CNS tumors. Because science.
A thank you letter to Marc Maron
I observed how a man, nearing life's end, wanted to soak up every pleasure. He ordered a wine paring with every dish! He peer pressured me into eating an oyster! He ordered three desserts.
#BTSM community survey
Please consider participating in the #BTSM community survey. The survey will be open between now and March 6, 2016.
A cranky primer on treatment for brain cancer, including a shoddy explanation of clinical trials
I was like, “What the hell? Write it all down? Who do you think I am, a person who just writes shit about brain cancer stuff?” And then I remembered I am a person who writes shit about brain cancer stuff.
When your first thought is, "Let's participate in research!"
Little did I know that my human genome is too large to send via email, but I was able to download it from my 23andMe account, upload it to Google Drive and share the link with the study.
So now my dad has brain cancer, too
it has taken me two full weeks to complete this blog post because I am (still) conflicted about how honest I should be about a man who was recently diagnosed with brain cancer. It is my longstanding policy to be honest in all things here, on my piece of the Internet, but I feel guilty outing a man for his crappy behavior when a terminal diagnosis is involved.
David, Part 2: The best thing I ever did in my life
A few hours after I learned David had started hospice I woke up in the middle of the night with an incredible urge: I had to see him. I didn't want to be a burden, and I felt like I was crazy, but I had to do it. Our last goodbye was not right at all, and I couldn't let our friendship exist on the one-dimensional plain of "we both have brain cancer." I wanted to know who he was as a person, outside of the disease.
