Sunday 19th February 2017,
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Browsing the "Surviving" Category

Dr. Jill Bolte Taylor

The TED Talk that shaped my perspective on living with brain cancer

This post originally appears on In February 2008, brain scientist Dr. Jill Bolte Taylor presented her “idea worth spreading” on the TED stage. One morning, a blood vessel in Jill Bolte Taylor’s brain exploded. As a brain scientist, she [...]

November 27, 2016 Surviving
All the meds.

The most misunderstood member of your health care team: the hospital chaplain

After my first brain surgery I remember lying in the neuro-ICU when a visitor came to the door. The visitor announced herself as the hospital chaplain and said she “just wanted to come by” and see how I was doing. [...]

November 4, 2016 Newly Diagnosed, Surviving
What if? TEDMED

UPDATED: I am attending TEDMED

UPDATE: I was successfully funded to attend the TEDMED conference. Thank you to everyone who donated to this campaign. My original appeal for funding is still available to read below. Thanks again!   It has been said that the most underutilized [...]

October 15, 2016 Surviving

Transcript of my talk at Stanford Medicine X

This is the transcript of my talk at Stanford Medicine X on Saturday, September 17, 2016. I will post the video as soon as it is available–some of the things I say make sense when you see the slides. Coincidentally, this [...]

September 25, 2016 Surviving
Stanford Medicine X

Who’s got my back? Watch the MedX livestream on Sept. 17

UPDATE: My talk has been moved to 8:55 a.m. Apply to watch all MedX presentations live. Ok, now I can say it. For the last five months I have been preparing, drafting, researching, redrafting, writing, practicing, and designing a five-minute [...]

September 5, 2016 Surviving
The Open Patient: Healing Through Sharing

Watch The Open Patient documentary

A few months back I mentioned I would appear in a short documentary called The Open Patient: Healing Through Sharing produced by RedHat. The 15-minute documentary is out now and you can watch it for free on the Internet. I [...]

July 24, 2016 Surviving

Celebrating Cancer Hashtag Communities and a Moonshot (week of June 27-July 4, 2016)

This coming week, the online cancer hashtag communities will be celebrating. Why, you ask? We have two good reasons. The Cancer Moonshot Summit happens Wednesday, June 29, 2016, in Washington, D.C. and in satellite locations all over the United States (see [...]

June 26, 2016 Surviving
Enthusiasm: Me photobombing sweaty, hard working kids digging in a future garden at a high school. I was also working hard that day.

Defining enthusiasm

When I was little, the things my dad said meant something. I may have applied more meaning to his words because the times when I saw or spoke to him were few and far between. One thing he said in [...]

May 21, 2016 Surviving

Hacking the hospital death

Names have been removed from this post to respect the family of the deceased. Last Thursday I lost a friend and mentor. J was a brilliant journalist and communicator, and a fantastic father. I am lucky he was part of my life [...]

April 30, 2016 Surviving
Open Source trailer

Meta Open Source: Open sourcing my blog post about “I am the open source patient”

A little over one year ago I wrote a blog post declaring that, “I am the open source patient.” Little did I know a few months later I would be contacted by RedHat–a mega distributor of Linux-based services… and they were working [...]

April 27, 2016 Surviving
My dad's brain cancer.

Virtual visit with my dad’s neurosurgeon

Some people have been asking for a status update on my dad. He has been moved from receiving hospice care at my mom’s house and is now receiving hospice at a skilled nursing facility through the VA. (And he loves it [...]

March 26, 2016 Surviving

Dear everyone with an oligoastrocytoma: Your diagnosis just changed

In May of 2015 I was hanging out in a bar with David Arons, the now CEO of the National Brain Tumor Society. We were talking about brain tumor pathology and I was grilling him about grade II astrocytomas, more specifically, [...]

March 20, 2016 Surviving