Hi, my name is Liz, and I am a curious person-turned citizen scientist, fairly well known for turning my brain cancer diagnosis into an open source chronicle of the patient experience. Today, my personal blog (this thing you are reading right now) acts as my personal journal and health care soap box, and receives more than 30,000 visits each year.
My interests include patient-driven research, the quantified self, open source health data, and neuroscience. (And cats. Always cats.)
Brain Cancer Stats
WHO Grade: II (I like to call it a 2+)
Biomarkers: IDH-1 positive, ATRX negative
Age at Diagnosis: 29 (9/2008)
Age at Recurrence: 29.5 (2/2009)
7/2008: Lumbar Puncture
3/2009-4/2011: Temodar chemotherapy
(5 days on, 23 days off)
7/2008-3/2009: Dilantin, 350mg/2x day
12/2008-Now: Keppra, 1500mg/2x day
4/2009: Lamotrigine, 400mg/2x day *Allergic
8/2010-12/2010: Depakote, 900mg/2x day *Caused tremors
12/2010-Now: Vimpat, 200mg/2x day
Why blog about brain cancer?
I began blogging about my brain cancer experience immediately after my first symptom: a grand mal seizure originating in the left parietal lobe. Coincidentally, this was just one week after my 29th birthday. After brain surgery in September 2008, I was diagnosed with a gemistocytic astrocytoma, a slow-growing brain cancer that has a high rate of recurrence. And recur it did! I had another brain surgery in February 2009, and underwent a whirlwind of treatment over the next two years.
So much has changed since my first blog post in July 2008, most notably, how patients are using the Internet to connect with each other and with healthcare professionals. Patients are also becoming more savvy about using the Internet to conduct their own research.
There is a word now for patients who are enabled, empowered and engaged in their own health care: e-Patients. Heck, it’s more than a word–it’s a movement. Learn more at e-patients.net.
Today I speak regularly on how healthcare professionals and patients are connecting through digital media, including in a TEDx Talk on how patients are using the Internet to form their own support networks.
As a result of this blog...
Open Source Patient
In 2016, I was featured in The Open Patient: Healing Through Sharing, a documentary about patients who are openly sharing their healthcare experience. This documentary delves deeper into why I started this blog and and maintain it to this day.
#BTSM hashtag community
In 2013, Charlie Blotner and I co-founded Brain Tumor Social Media (#BTSM), a patient-run, grassroots hashtag community that’s helping connect people diagnosed with brain tumors around the world.
#BTSM is part of the Healthcare Hashtag Project and is used by brain tumor patients, caregivers, clinicians, researchers and hospital systems around the world. Learn more about the impact of healthcare hashtags in the medical journal JAMA Oncology.
I am a fan of cancer advocacy rather than cancer awareness.
Through 2012-2015, I was the California Lead Advocate for the National Brain Tumor Society (NBTS). As an advocate I spent time lobbying Congress on the Cancer Drug Parity Act. I also helped California become the 27th state to pass an oral chemotherapy parity law.
While I am no longer the California lead advocate with NBTS, I am still a huge fan of the organization and I currently serve on the Medical Advisory Board.