Hi, my name is Liz, and I am a curious person-turned citizen informaticist, 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 roughly 30,000 visits each year.

My interests include patient-driven research, open source health data, palliative care, and neuroscience. (And cats. Always cats.)

Brain Cancer Stats

Diagnosis

ASTROCYTOMA
Type: Glioma

WHO Grade: II
Biomarkers: IDH-1 positive, ATRX negative
Age at Diagnosis: 29 (9/2008)
Age at Recurrence: 29.5 (2/2009)

Treatment

7/2008: Lumbar Puncture
9/2008: Craniotomy
2/2009: Craniotomy
2009: Physical and occupational therapy

3/2009-4/2011: Temodar chemotherapy
(5 days on, 23 days off)
2011-2013: MRI scans every three months
2013-2015: MRI scans every four months
2016-current: MRI scans every six months

Anti-Seizure Meds

7/2008-3/2009: Dilantin, 350mg/2x day
12/2008-2013: Keppra, 2,000/2x day
*Self-tapered down to 1,500mg
4/2009: Lamotrigine, 400mg/2x day *Allergic
8/2010-12/2010: Depakote, 900mg/2x day *Caused tremors
2013-Now: Keppra, 1500mg/2x day
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 WHO Grade II 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 gain a deeper understanding of their own diagnoses, using it as a tool in medical decision-making.

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, and how patients are able to make better informed medical decisions when they have access to their full medical records (ala OpenNotes).

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.

Advocacy


In July 2017, I was appointed to the Board of Directors for National Brain Tumor Society.

From 2012-2015 I served as 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.