Our cancer journal is e-published!

I'm so happy to announce that my community's CaringBridge cancer journal has been published online, for anyone to download (free) or read online. Laugh, Sing and Eat Like a Pig: My Year of Living Cancerously now has an official home on the ACOR web site.

Please spread the word about this book. I ain't in it for the money - I'm in it because 4,000 people a day (in the US alone) discover they have cancer, and face that moment of "What on earth do I do NOW??" I know that feeling very well. Some look for what to do next; others don't even think they can do anything — they just think they're screwed and go into depression.

My intention in publishing this is to demonstrate to both groups that they have a lot to say (and do, and be) about how they face their situation, no matter what the outcome. People who participated in the journal year captured in this book say they were inspired and empowered by the experience, so we're sharing it.

The title is impish and bratty, intentionally so. :) It's the approach I chose to take to the news that I had a lethal cancer - a summary of the advice I got in the first few weeks after diagnosis, before the online journal began. "Laugh" is for the healing power of laughter, as famously discussed by Saturday Review editor Norman Cousins in his book Anatomy of an Illness; "sing" is the advice my doctor gave ("you don't want to stop doing life activities that you love - it sends the wrong message"); and "eat like a pig" was a diet the hospital sent me, to increase my caloric intake, to combat weight loss and prepare for the battle ahead.

Admittedly, "laugh, sing and eat like a pig" is not a conventional approach to a deadly diagnosis. But that's kind of the whole point. And the whole story is true, every word.

It starts with news of the diagnosis, and planning our approach; discovering the phenomenally valuable cancer communities on ACOR.org; starting the online journal; readjusting life to deal with the pain that arose when the cancer ate away at my thigh bone (eventually breaking it); numerous posts from the "department of transportation," learning to get around by crutches, walker, wheelchair and motorized scooter; extraordinary surgery to completely remove the primary tumor, which had already attached itself firmly to the bowel and a muscle on my spine; learning the uncertainties of the severe immune treatment that we selected to then attack the metastasized lesions from skull to lungs to ulna to thighs; the treatment weeks themselves, including many posts from inside the hospital (it is SO COOL that Beth Israel Deaconess has free wireless!!); the experience of getting MRIs, bone scans, CAT scans and waiting for the "scores"; and all the while dealing with the complications of owning two houses on diminished income, because our Minnesota house hadn't sold yet.

The book has a lot of "e-patient" in it, though I didn't even know the term existed until a few weeks ago (January 2008). See, toward the end of 2007, as my lesions continued to shrink, the question arose, "So what do we do with this year's incredible experience?" When the e-patient discovery was handed to me by my doctor, the answer fell in my lap. So my further hope is that the book will let newly diagnosed people learn about the tremendous resources and choices made available through the e-patient movement.

Please send any comments on the book, pro or con, feedback on clarity or message, anything. The voices of a hundred people are captured in the book; I hope we ultimately touch a million or more. (And don't try to tell me what's realistic and what's not!)

I'll leave you with this, which is the end of the prolog:

At the start of this adventure, I really did not know how many months of life I had left. I did know I was going to do everything in my power, whatever that might be. I also knew that whatever time I had left, I was going to live it like crazy … to laugh, sing, and eat like a pig.

I challenge you to be fully alive, every moment that you have left in life. As you read this book, please listen for how you can face every moment with power and grace, no matter what your circumstance. You have the choice. Be responsible for your own outcomes.

So, how perfect is this? While researching Norman Cousins tonight, I ran across this quote:

"Death is not the greatest loss in life.
The greatest loss is what dies inside us while we live."

Amen. No matter what your situation, no matter what your outcome, my most fervent wish is that you be fully alive for every moment you live. That’s the essence of the story you’re about to read.

The book's location, again, is here.

A Singing Valentine from a barbershop quartet

This is a commercial for one of the things that makes me happiest in life: singing barbershop harmony!

As this blog's "About me" page says, I sing in a men's barbershop harmony chorus, the Nashua Granite Statesmen. Most people don't know that there are barbershop choruses, but most do know about barbershop quartets. And indeed, as the photo shows, I'm in one, named "Route 5." It's loads of fun - there's a ton of tradition around this style of music - but the most fun is every February 14, when we hire ourselves out in quartets to do Singing Valentines, as a fundraiser.

The photo shows us with one of our "victims" - the head of the English department at a local high school. We ambushed her in front of a department meeting, claiming that our name is The Dangling Participles, and sang her a love song. A yearbook staffer was there, so next spring we'll be in print. How cool is that?

Next year you can order a Singing Valentine quartet (male or female) by going to www.SingingValentines.com. Or, if you're in the Nashua NH area, just contact me - next year I'm the local chairman. (Better yet, order now - why wait for the rush? :-)

If you're impatient, though, you're in luck - my chorus's annual show, with a superb women's barbershop chorus, is Saturday April 5. The featured quartet is named Rounders - we're flying them in from Fort Lauderdale, because they're good: they placed 8th in the world at last summer's championship. Here they are singing the Irving Berlin classic "They Say It's Wonderful":

11/27/08: Oops, that video was apparently not legal, because now it says "no longer available." YouTube took down a bunch of popular barbershop recordings earlier this year because they didn't have royalty arrangements. Well, the melody is gone but the snapshot lingers on....


As it happens, my chorus is currently recording that same song (a different arrangement) for our next CD, which will be out this fall - all Irving Berlin songs (Midnight Choo Choo, I Love a Piano, How Deep is the Ocean, and many more). When it's available for sale, you'll know it. :) But you can hear a preview, and much more singing, in Nashua NH on April 5. Tix: info -at- granitestatesmen.org (or me).

Randy Pausch: "Alive and Healthy"

Randy Pausch is the Carnegie-Mellon professor whose "Last Lecture" got widespread media coverage last fall. (See Wikipedia for links to many articles, including the Last Lecture.) Last Friday (2/15/08) was a big day for him. From his Update page:

"Today is a pretty important day. It was August 15th, 2007, when I was told I likely had three to six months of good health left."

As I've said several times on my CaringBridge site, I like a lot about Randy's attitude: "I'm going to keep having fun every day I have left, no matter how many or how few of them I get." In the picture at left he's holding the 2/15/08 newspaper, as if he were a ransom hostage proving the date. :)

Actually, truth be told, I don't have the opinion that everyone should keep having fun every day they have left - my stand is that people (that's you) be fully alive, whatever form that takes for them. (My sister Suede sings a wonderful song about this, Roxanna Ward's "Remember Who You Are.") And for this Randy Pausch guy, who he is is Fun. In the Last Lecture, he said "I don't know how not to have fun. I mean, look at me - I'm dying and I'm still having fun." It's easy to see why he's been a gifted coach for Disney's Imagineering people.

Neither he nor I knew where we'd actually be at our "likely" drop dead date. We just did everything in our power, and meanwhile we just lived the hell out of every day.

When you're told you likely have six months to live, and that day comes, will you still be absolutely being who you are, every day? I request that you do.

p.s. You'll know you've really gotten the unbearable lightness of it all, when you can look at Randy's situation and grinningly wonder if it's all an elaborate ruse to get early retirement and get away with it. :)

MSNBC covers CaringBridge and CarePages

Barb Ewen of my company's PR firm forwarded this link to me:

Coping with a health crisis, one click at a time
"Personal patient Web sites transform the experience of illness, users say"

It's a good story that talks about CaringBridge, the home of my year-long journal, and CarePages, another site. There's a lot of e-patient in the story - people getting and giving support, using the Internet to better endure whatever they're enduring.

I am personally very grateful for the free service CaringBridge provided during that year. But I must say, I am frustrated to this day by the poor quality of their software. Just this week I've had two different people mention that their CaringBridge accounts have again gone flaky. One is again no longer receiving email notifications of my posts, and the other is again unable to log in at all. Those two bugs have been reported to me at least 100 times in the past year by people who were trying to support me.

I spoke at least twice last year with CaringBridge staff and they said they're not fixing those bugs, but are instead investing in creating a Spanish language version (which will of course include the same bugs).

The other major bug I encountered repeatedly is that your session can time out while you're in the middle of composing a long thoughtful message - which is definitely a key purpose of a cancer journal. When a bank site says your time is almost up, you can click to continue - but CaringBridge doesn't even do that. Instead, it waits until you hit Submit, and THEN tells you you were already timed out - and then you find everything you typed has been discarded and you can't get it back, via the Back button or anything.

I very much hope that this post will prod founder Sona Mehring into fixing this otherwise wonderful web site.

Have you had experience with either CaringBridge or CarePages? Have you had problems like these?

Let's spread the term "e-patient"

I'm thrilled that there's so much publicity these days for patients being empowered by the Internet, and doctors supporting them, such as Amy Tenderich's article (below).

I have a suggestion: let's use the term e-patients when we talk to others about this, in print and online and in person. I suggest this because other terms are appearing in articles, such as "medical googlers," and some stories document unproductive or rude instances of patients who use email and the Web. In contrast, the e-patient movement has a long history and well established set of principles.

E-patient means something specific, a set of values and behaviors worth knowing about, and worth distinguishing from "just googling."

I just commented with more details about branding on Susannah Fox's Nov. 26 post on the e-patients blog.

Don't be a jerk to your partner.

As I learn about the e-patient movement, I sometimes encounter pathetic stories that aren't helping anything. Time's tormented When the Patient is a Googler is a worst-case nightmare - a doctor whose first exposure to an intense googler was a patient who (with her three year old) would be a nightmare in any office visit, with or without Google.

Don't do that. The point of the e-patient movement is to create partnership with your providers.

If your physician is new to the idea, share, don't clobber.

An e-patient writes in Newsweek.com

Newsweek.com has published A Healing Blog, a well-written article by the amazing Amy Tenderich, author of DiabetesMine, a prize-winning diabetes blog. (Amy just added a comment to my first e-patient post.) Here's a perfect e-patient snip from her article:

I'm just astounded to think that one sick mom in California can reach out to so many fellow patients, create a community, and actually turn the whole thing into a business.

Amy's story illustrates a major aspect of the e-patient movement: that if patients (the consumers of healthcare) get to start conversations and other patients get to take those conversations wherever they want (a.k.a. "We get to say"), the most useful conversations will thrive, and all of us - consumers and providers alike - will benefit.

Chapter 2 of the e-patients white paper lists seven principles of patient-driven healthcare. Amy's article illustrates three of the seven:

1. E-Patients have become valuable healthcare resources and providers should recognize them as such.

3. We have underestimated patients' ability to provide useful online resources.

7. The most effective way to improve healthcare is to make it more collaborative.

Plus, it quietly suggests support for a fourth:

4. We have overestimated the hazards of imperfect online health information.

#4 doesn't say there are no hazards - you and I need to be smart consumers, same as if we're buying a car or a camera. (See Lucy Jo's brilliant comment on last week's post.) It says that those risks are manageable: all of us (patients and providers alike) can publicly holler "BS!" when we see it. In the process, we learn to find trusted resources - like Amy's blog.

Welcome, Amy! Keep spreading the word, and keep in touch.

Web 2.0 means we get to say.

My post below mentions "2.0" stuff. I've been dealing with this subject at work for the past year, but I know a lot of you have only recently heard this "buzzword" buzzing around like an unexplained annoying gnat that keeps getting in your ear, making it hard to think.

The e-patients blog yesterday has the best layperson's introduction I've ever seen for these key aspects of Web 2.0:

• blogs
• wikis (Wikipedia is just one example)
• social networks
  
• social bookmarks.

Worth a view. (These little "training videos" require having your speakers on.)

The big deal about all this is "user generated content" (UGC). See, in the early days of the Web (now known as Web 1.0), the Web was read-only: all web "content" (the stuff you read or view) was created by people who had access to a Web server and knew all the geeky stuff you needed for hand coding a web page.

In contrast to that, today we can create content: Look, I'm sitting here right now, blogging about whatever I want - just as if I could conceive and write a book and get it printed and have it appear in every library in the world, instantly. (Because it IS, right now, available on every computer in the world that has an Internet connection, including my iPod Touch.)

This that you're reading, right here, is user-generated content.

And the big thing about THAT is that it's enabled us to spout our opinions, for instance rating books on Amazon or even posting our own book reviews, as short or as long as we want.

What this means in the world of e-patients is that we ourselves get to talk about anything we want; instead of reading only what a magazine editor thinks we want (or need to know), we ourselves get to start any discussion we want and take it anywhere we want.

You could put it this way: Web 2.0 means we get to say. We get to say whatever we want, and we even get to say what gets talked about.

This is a core principle cited in the e-patients white paper, which you really should read, in PDF or wiki form. More to come.

Latest on the e-Patients blog

A valuable new post:

Consumer Resources
As we continue our discussion of the definitions of 2.0 and user generated content (UGC), I thought I'd highlight some other buzzwords and link to a few consumer-oriented resources. ...

btw, while on the site, here's the quote I got today from their "Quote-a-matic":

In a time of drastic change it is the learners who survive, while the 'learned' find themselves fully equipped to live in a world that no longer exists.
—Eric Hoffer