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!
Sorry, I forgot to tell you my dad died 14 months ago
I did not blog about my dad when he died. I wrote a song.
Liz Salmi at Stanford Medicine X
…after delivering this talk, I heard from many people who identified with my experience. These are people who don't normally connect with my brain cancer background. All I can say is, not everyone has a perfect home life. You never know what is really going on unless you express it.
Transcript of my talk at Stanford Medicine X
This person who gave me almost nothing in life has given me so much more with his death. And for this, I am thankful. So there is no reason to be sorry for my loss.
Defining enthusiasm
I've lobbied Congress on chemo drug parity. I helped start a Twitter community for people with brain tumors. I changed my career to put me in direct connection with leaders in health care. Immediately after my dad's diagnosis I enrolled the two of us in a familial study of gliomas. I obsessed over the release of the 2016 WHO Classifications of Tumors of the Central Nervous System. I declared to anyone who gives a shit that "I am the open source patient," and I am happy to share my personal health information if it would possibly give a researcher a leg up in the study of this disease.
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.
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.