Laugh, Sing, and Eat Like a Pig: Empowered Patients and Participatory Medicine

Not long ago, I sat in the hair salon getting the gray 'removed' from my head.  I have more gray hairs than I used to, most likely due to age.  Some due to medication, I think.  It's one of those things which you just learn to live with, especially if you juggle chronic illness.

The book I was enjoying was written by a twitter friend and fellow empowered patient, Dave deBronkart, aka "e-patient Dave." Dave was diagnosed with Stage IV Kidney Cancer in January 2007 after an x-ray for a shoulder problem (which was fine) showed a spot on his lung. That spot turned out to be a metastatic tumor from kidney cancer which had spread to his organs, bones, and even muscles.

As you can see ePatientDave is alive and well.  He is proof that it just may be possible to turn cancer into a chronic illness.  But he made that happen with a lot of persistence, being highly engaged in his own care, connections who provided just the right information at the right time, an aggressive treatment trial, the support of many loved ones, and a proactive relationship with his medical team.

Dave had become an e-patient before he had ever heard the term.  In the past two years since, Dave has become the torch-bearer for the empowered patient and participatory medicine movement.  I have viewed footage of some of his speeches at various conferences, so I thought I knew his story.

In reading his book, I learned so much more.   

"Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it)"

Here's my disclosure.  Dave was tweeting with some influential e-patients and activists, discussing when they would receive their review copies.  I sent Dave a note.
 

"I'm not a 'big name' blogger, but I'd love to review your book.  Also, look forward to meeting you at http://epatient2010.com"


Dave talked with his publisher and I received a copy ten days later.  Laugh, Sing, and Eat Like a Pig is available on Amazon for $17.95 and eligible for free-shipping.  My copy was free to me.

During Dave's journey, he kept in touch with family and friends through a website, CaringBridge, which somewhat resembles a private blog.  A journal to document, share, and keep people informed.  His online journal forms the foundation of the book.  However, it is not the entirety.

Dave's book is full of hope, empowerment, and engaging discussion of the power of the patient in healing health care through participatory medicine.  While I knew the topic going in, I came out relating in a way I had not expected.

Below is an excerpt [pp.96-97, reprinted with permission] which is so rich and honest that the topic transcends cancer, health, or medicine.  Dave's journey delves into the depth of realities, visible, known, acknowledged, and unknown.

Saturday, February 10, 2007 [6 weeks after the x-ray]

What do we name the tumor?

Okay, you know me: I'm a brat about just about everything.  I heard that some people name their cancer and talk to it.  So I've been (idly) wondering what to name this thing.  Nothing normal, that's for sure - nothing like "Frank."  I want it to be something really disrespectful, something that would make it curl up in shame and just get out of town.  What to call it... it's a kidney cancer; call it "Kid Can"?  Naaah.  "KC"?  Bleah.

Thursday I had dinner with daughter Lindsey and she got That Look in her eye.  She looked off to the side and came back with "How about Reeni?  For renal cell carcinoma?"  I kinda like it - it suggests a sneering "Neener neener neener, Reeni is a wiener."

Monday, February 19, 2007 10:30 PM

I'm going to stick my neck out here about how to relate to the cancer inside me.

About ten days ago I posted about coming up with an insulting name for the cancer, something to make it shrivel up and get out of town.

A few days later, Sister Suede raised a thought I've heard (rarely) from others, that there might be another way to look at it: that the cancer is actually part of me (which it is - homegrown by Yours Truly), and it's something to have a different sort of relationship with.

I've thought about it since then, and I want to explore this.  Please play along for a minute.

 *   *   *

All these tumor cells are actually part of me, from me, created by my body.

My rewording of Suede's observation is that there's no integrity in viewing it as something foreign.  It's a mistake, and will surely leave me with no power to be effective in relating to it.

So I'm looking for a way to acknowledge that this is actually part of me.  It's a part that may be working against me, and a part of me that I may not like; but if I don't grant what's so, or if I make it wrong for being what it is, I'll have no power (no effectiveness) in the matter.

In this point of view, the game would be to see what that part of me is incomplete about - what that part of me has been unable to express.  And while thinking about that, I caught a flash that it could be self-loathing about something.

So I'm looking at granting "being" to some sad or angry or disapproving part of me, acknowledging it, being in compassionate acceptance for the pain or fear that is incomplete in it.  I'll let it get complete.

Mind you, I'm not saying I intend to have a warm fuzzy-lovey relationship with self-destruction.  :)  But I have a friend who overcame an unbeatable case of hepatitis-C, and I remembered that he used an approach similar to this, among other things.

I'm not about to stop doing all the treatments I'm doing.  But I'm also getting a strong sense that it makes no sense that I'd have a self-destructive thing growing inside of me.

And as part of that I'll look for an additional name for it, a name that embodies the spirit in which I want to transform this thing.  The idea is that if the unexpressed can get complete, a new future and a new world of possibility can become available.

We shall see.

If you enjoyed that, please go read another excerpt from Laugh, Sing, and Eat Like a Pig which was published at KevinMD.com just yesterday.  Read Chapter 3: Facing Death-With Hope.

To learn more about the e-patient white paper and participatory medicine movement, please visit the following websites:

• e-patients.net because health professionals can't do it alone

• e-patients white paper in wiki and pdf form

• Society for Participatory Medicine bringing together e-patients and health care professionals

• epatientdave.com/for-patients

"An engaged patient plays an active role in his or her care. Or, as e-patients.net founder “Doc Tom” Ferguson said, “e-Patients are Empowered, Engaged, Equipped and Enabled.”

We who’ve become e-patients don’t wait for our providers to tell us everything; we get it in gear, we ask questions, we do what we can to help."

You and I who take an active role in our own health care and disease management are e-patients.  We are empowered.  We are engaged.  In our community, we are also empathetic.  Thank you for traveling this journey with me.

And if you wish to follow along, my RA friend Kelly Young is journaling her reading of the book.  Check out Kelly's website at Rheumatoid Arthritis Warrior.

Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it)
©Richard Davies deBronkart, Jr.
Published by Changing Outlook Press, an imprint of
Changing Outlook LLC.
ISBN: 978-0-9816504-3-2

Postlogue:  Here is the review I left on Amazon for Dave's book.  I meant every word.

As someone living with two incurable chronic illnesses, I didn't think that I could relate to someone who 'beat' cancer.  Well, I was wrong.  We have more in common than I had allowed for in the artificial segregation of patient communities. 

"Laugh, Sing, and Eat Like A Pig" is more than a cancer survivor's story of facing down death.  It is the story of how one patient becomes empowered and engaged in his own health care, without which he may have simply become a statistic.  And not the successful treatment trial responder type statistic.

"ePatient Dave" became an e-patient before he had ever heard the term.  This saved his life and it will help so many other patients who learn from his experiences.  We can all become empowered patients, engaged in our healthcare, working WITH our doctors for better outcomes.

Dave's ongoing story has inspired me and it will you, too.  In other words, I give "Laugh, Sing, and Eat Like a Pig" two-thumbs-up.