It's my Drop Dead Date plus three years. Thppppt!

Three years ago today was "razzberry day," aka Drop Dead Date. So, today on my CaringBridge journal I posted this picture.

Huh?? Patience, my lovelies; all shall be revealed:

At diagnosis on January 11, 2007 my median survival was 5.5 months, which predicted an "expiration date" of June 26. On that date all my buddies gathered at noon eastern time and blew razzberries (Bronx cheers) at Death as we zoomed past it and into the future.

Here's an email Mom sent yesterday to my siblings:

"Hi, all - Saturday, June 26 is the 3rd anniversary of Dave's beating his "Drop Dead Date" of the average 5.5 months survival time after diagnosis of his particular brand of cancer. I personally plan to give the razzberry salute at noon, again, to commemorate the day, and invite you to join me...

"He's at a conference in SC, home Sunday night; his book Laugh, Sing, and Eat Like a Pig is coming to Amazon SOON. I've spent the past few days doing a bit of proofing for him, and reliving the story; some tears, some giggles, lots of strong reminders of how and where we all were 3 years ago, dealing with HIS cancer, each in our own way. And the book also has much of where he's been since then... I'll (personally) make sure you each get a copy when it's published. My treat, though Dave may have had that thought already. If so, I win because I'm the mother and I said so..."

Dat's my mom - and you're my razzbuddies. Life is crazy good!

CaringBridge testimonial video

Last week I wrote about my visit to CaringBridge headquarters. The night before I had an idea - why not pull out a camcorder and record an impromptu testimonial? I've been doing some video interviews lately, and they come out okay; why not give a big thank-you to the website that meant so much to me, and to my community, during my illness?

I was tired (not enough sleep that intense week!), so I was a little hoarse, but here it is. Heartfelt.



(Email subscribers, if you can't see the video, click here to view it online.)

I encourage you to send a donation to CaringBridge, small, large, or tiny. It's a darn good service, and they offer it free to anyone. And at a time of crisis, that's a big deal. You can help make it possible for more people.

"The poster child for patient empowerment" - Mpls Star Tribune

Well THIS is fun.

Last week I gave the keynote address at the 13th annual ICSI / IHI Colloquium - an audience of 500+ physicians, hospital administrators, health plan (insurance) executives, all focused on doing healthcare better. ICSI is forward-thinking and Minnesota-based (not surprisingly - MN is a long-time leader of better health practices), and is finally starting to get recognition outside the state. Attendance in the past has always been around 300, so it's good to see it growing.

In the audience was Maura Lerner, a health reporter for the Star Tribune. We talked afterward, and she wrote a long, great piece that was on the front page of today's paper. A few details of my story are a little off, but she completely got the message right regarding patients being engaged in their health, as effective partners of their physicians.

They wanted a photo, so they came with me the next day when I visited the headquarters of CaringBridge, the wonderful website I used to communicate with family and friends during my illness. This photo is from the tour I was given by Sami Pelton, their director of partnerships. (That's her.)

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Update 5/17: During the visit I recorded an off-the-cuff testimonial video for them. It's in my next post.

Social media in a medical crisis takes off

This page lists CaringBridge as the third most-used system for blogs, as judged by # of visits to their pages.

I have over 18,000 visits to my CaringBridge.

CaringBridge story

This weekend the Associated Press is publishing a story about CaringBridge and a similar site, CarePages. It relates the experience of several users, including my community and family. For more information, see my CaringBridge journal.

Update 6/8: Scientific American's blog has this:

Blogging--It's Good for You
The therapeutic value of blogging becomes a focus of study

... A study in the February issue of the Oncologist reports that cancer patients who engaged in expressive writing just before treatment felt markedly better, mentally and physically, as compared with patients who did not. ...

Visitors: if you're looking for great resources for self-education on how to be an effective consumer in today's healthcare system, here's a post from my CaringBridge site a few weeks ago:

RESOURCES FOR INTERNET PATIENTS

As regular readers know, during this past year I've become a strong advocate of all the ways patients can improve their outcomes and their experience, becoming active participants in their care, especially by using the Internet.

Here are some resources:

• The E-Patients blog: E-patients are "empowered, engaged, equipped and enabled." This blog covers a wide range of topics about the new world of participatory medicine. If you're a patient or family in need, educate yourself by reading the wonderful "white paper" (manifesto) available on that site.


• A community support site, like CaringBridge. It saves you an enormous amount of time corresponding, and lets your supporters check in anytime instead of keeping up with emails.
   To see how it works, you can get the whole year's transcript (1/30/07 - 1/30/08) as a free download (one big file or single chapters), and read while you're sitting in waiting rooms. :)

On this blog I'm starting a beginner's guide to participatory medicine. It's my effort to share what I learned last year, with the intention that others can take a shortcut. In particular I recommend the chapter about "the five pillars of participatory medicine."

Those sites have many links to other web sites. Do your own exploring - see where it takes you.

And by all means, get out there and PARTICIPATE. In the world of blogging, that means you click the Comments link (or Guestbook, on CaringBridge), and enter questions or comments.

Be an e-patient: Ask what you want to know; say what you think.

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?