Thursday, October 4, 2012

My ePatient Bio from Stanford Medicine X

This bio was published in the 
Stanford Medicine X 2012 ePatient eBook which 
details the genesis of the groundbreaking 
#ePatient Program and features the 
inspiring stories of my fellow ePatients.

In early 1994, when I was newly diagnosed with my first breast cancer, I was initiated as an ePatient via a pre-internet social network—people connecting with phones.

My oncologist put me in touch with a former patient and encouraged me to ask her about her story of surviving cancer. I’m certain she knew that this woman would not only inspire me, but share tips and connect me to resources that would help me on my way…which, of course, she did. That’s how I discovered Harold Benjamin’s book “From Victim to Victor,” and the then quasi-revolutionary concept of “Patient Active.” This approach, which my oncologist and her former patient modeled, clicked for me, and thus began my ePatient journey.

In October 2005, when I began the recovery process from my second breast cancer, I joined a support group moderated by my radiation oncologist and an oncology social worker. I discovered the power of sharing stories and information in a safe setting and found solace in my ability to help and inspire people by “just being there” as a 2x survivor.

In December 2010, when I was recovering from 18 months of chemotherapy and surgery for my third breast cancer, I followed my curiosity about new research at the annual San Antonio Breast Cancer Symposium, explored their website, and found the event’s Twitter hashtag: #sabcs.

I read the feed until I saw a statement that intrigued me, at which point I jumped in and asked a question. Next thing I knew, a real person from a real, top-notch cancer center took the time to answer me, and my first (of what has now become many) real Twitter conversation about health care began. Here’s that seminal tweet (I’m @itsthebunk):
@danafarber: @itsthebunk 1) Fear/denial; some women feel they don't want to know. 2) The recent guideline changes make things less clear-cut. #sabcs 12/09/2010
Those three crucial experiences, plus many more, are what led me to become an informal patient advocate. I can’t tell you how many cancer patients I’ve helped since 1994, through an amazingly organic process. Someone refers a friend…someone asks a question in a support group…my oncologist asks if I don’t mind talking to a new patient…

I’ve been through it all. Each of my cancers were primaries, each was caught early and treated aggressively. While utterly disrupting my life, each episode has also been an opportunity for knowledge and growth. I’ve refined my knowledge, learned new things about coping methods and how to really heal, and developed my own tricks of the trade.

I’m deeply passionate about helping others become well-informed, engaged patients because I know one simple thing: getting a serious disease is terrible, but you have choices for dealing with it. If you can become a partner in your own care, your journey will be easier, you will be able to find grace and come to peace with agonizing decisions, you will meet some amazing people on the way, and you will discover how much inner strength you never knew you had.

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