3 years ago I was out of time. Now I'm in it.

Yesterday's edition of this had a wrong link. Apologies.

Three years ago this week I got my formal diagnosis. This week:

Last Sunday the New Hampshire Union Leader ran a story "What's next for health care" following the Massachusetts Senate election. For some reason, I'm happy to say, they led with my sentiment that I just want people to be able to get good care when they need it.

At the end of the interview I learned that the reporter's mother had died of cancer 5 years ago.

Then this piece appeared online today, for tomorrow's print edition of Time. Again somehow they put my story first.

Honestly I think what's doing this is that I always hammer on the point "This is personal. Your time will come." Don't I know it.

And, as fate would have it, this is happening unexpectedly in a week when I'm in DC, speaking at some conferences and meeting executives of non-profits. Yesterday I decided to visit my legislators' staff on Capitol Hill; I met with one yesterday and have appointments with the others tomorrow. AWFULLY convenient that I can have this publicity in hand when I walk in!

The universe works in mysterious ways. This time, I'll take it.

#GetUpAndMove, music, and "the fun theory"

Twitter friend and outrageous visionary Jen McCabe is a brilliant thinker with a San Francisco startup company called "Get Up And Move." It's a free social media way of encouraging people to, well, get up and move. (Don't I love things that are exactly what they say?)

Its URL is the fun GetUpAndMove.Me, and its tagline is "Barter with Exercise." Go look at it. At present it's only tied in to Twitter (hashtag #getupandmove), but they're working on Facebook.

I've never been an exercise fiend, but GetUpAndMove has led to my discovering that I like doing a couple of minutes of exercise if I do it to a song. The radio site blip.fm has a ton of great songs (to play for free), so for instance if I agree to do a minute of pushups, I start one of my songs and do it. Examples:

• Soul Sacrifice (Santana at Woodstock)
  
• Little Deuce Coupe (Beach Boys)
• Ecstatic R&B love song introduced to me long ago by friend Frank Moore: Don't Leave Me This Way - starts modest and builds. Great for jumping jacks
  
• And my personal anthem: Play That Funky Music, White Boy

Today in the email from a chorus buddy I got this video, and realized this is what makes "GUAM" (as its fans call it) work for me, when so much hasn't: fun.



(I add music, but with or without it, there's the fun of challenging people, and publicly trash-talking your challenger or challengee.)

Here's to Jen, here's to Frank, here's to innovation, and here's to fun. Get up and move!

More on surgical options from my doctor

Last May my urologist/surgeon, Dr. Andrew Wagner, graciously did an informal interview with me about surgical options for kidney cancer. That post is here.

People on my kidney cancer patient community on ACOR.org were recently discussing the different ways their surgery was done. I asked Dr. Wagner for his thoughts about "open" surgery vs laparoscopy (I had the latter), and he responded:

There are several options for open nephrectomy, some incisions removing portions of rib and some not.

All of the open options ("back or front or side or flank etc.") are generally decided on based on surgeon preference and training. For example I have a "go to" incision for open nephrectomy called a thoracoabdominal incision, it is a flank incision but extended to also open the diaphragm. This is a fairly common urologic incision for open kidney surgery.

I need to remove a piece of rib about half the time with this incision. I like this (rather large) incision because the only time I do open kidney surgery is if the tumor is very large or if the patient has had major abdominal or flank surgery already. In my opinion and experience, over 90% of kidney tumors should be able to be completed laparoscopically.

(reprinted with permission)

My hospital's renal tumor program web site, with contact info for the doctors, is at www.bidmc.org/renaltumor.

Meeting Dr. Amy Ship - "There's no billing code for compassion"

Today I met Dr. Amy Ship, a primary care physician at Beth Israel Deaconess Medical Center, who was the recipient last month of the Compassionate Caregiver Award from the Kenneth B. Schwarz Center.

What a wonderful person. She's not involved in all the policy stuff, the "health 2.0" stuff, the "eHealth" stuff where I spend my time - she just wants to deliver care.

Amy and I were talking (very informally, like this incompetent informal photo :-)) about what we (all of us - that's you) can do to get everyone else out of the way so patients and clinicians can just do care.

One line in her acceptance speech: "There's no billing code for compassion." And that led to an idea.

We have an idea for a campaign to raise awareness about this. I'm sure somebody else has used this name, but to me it's about the doctor-patient relationship, so it should be called:

"Who Cares?"

Waddaya think?

Here's Amy's acceptance speech, which I first saw on Paul Levy's blog. It was so inspiring I called and dug her up. (Doncha just love how social media lets ideas spread??)

A celebration of you: please sign in

To say the least, this has been an astounding year for me. It's not New Year's Eve yet, but I want to get started on remembering everything that's happened.

I can't begin to get a handle on the scads of people I've met this year, so I'd like to ask you to sign in, in a comment, and say hi!

You can read this retrospective if you want (this is only the posts on this blog, not e-patients.net) or just skip to the comments and say hi. I'll really appreciate it.
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On New Year's Day I posted about "Physicians as coaches, patients as players" - one of my most-quoted concepts since then. Participatory medicine!

In January I first heard of Jay Parkinson, then met him. In May he was in Fast Company's "Doctor of the Future" article; in September I was in Health Leaders "Patient of the Future" article; and today at my day job, we released a podcast interview with him.

In February I spoke at the TEPR+ medical records conference and discovered that doctors mainly hate the medical records systems that are available. They're overpriced and hard to use. I met many wonderful people there.

I also wrote my first post about the business of healthcare, "A Thousand Points of Pain," after realizing that with the massive amounts of money at stake in US healthcare, the money interests were going to fight tooth and nail to protect their stake. I said:

I'm starting to think that as patients, our fastest access to better solutions is to take matters into our own hands: use the Internet to gain access to information (and to each other) and create new tools of our own.

Let's get moving – let's show 'em how e-patients can git 'er done! Let's gather our facts, band together, create new tools, and spread the word to each other.

IBM picked it up and cross-posted it on their Smarter Planet blog.

It was also in February that I decided to transfer my personal health data to Google Health. And, separately, became co-chair of the Society for Participatory Medicine.

In March I created a video for my hospital and got to know the eminent David Kibbe, whom I'd met at TEPR+. I also pushed the button in PatientSite to move my data into Google Health, and was a little stunned by the result. I could have flamed, but I'm not the flamer type, so it took me weeks to figure out what to say. And on the night of March 31 I started writing.

In April I finished that post, and all hell sorta broke loose. On April 13 it was in the Boston Globe, a week later was the "Health 2.0 meets Ix" conference in Boston with lots of publicity and people from DC. Met a ton of people there - it was bizarre and fun having my "celebrity moment" - people in the hall saying "omg you're e-Patient Dave!" :-)

In May and June I didn't say much here; I attended three policy meetings in DC, and that was an amazing experience. Met a slew of wonderful people there, too. I also got to meet famous author/analyst Clay Christensen, and recorded my first podcast, interviewing my surgeon with questions from other patients in my ACOR community.... well, enough - let's get on with it. It's been an ASTOUNDING year. Sign in! Say hi!

Don't let the median scare you to death

Further to Friday's post Advice to a Cancer Patient Facing News He Didn't Want:

One powerful factor in my case was the education I got about not putting too much meaning on the probabilities I read. They may be accurate but they're not useful to focus on, except as a motivator to get it in gear.

Here's more background on that, for people with varying appetites for math. Note: This isn't anti-science blather; it's scientifically valid. But often clinicians are taught not to give people "false hope" i.e. that they shouldn't get your hopes up "unrealistically." I understand that - it must be horrible to face a bereaved family, crying "But you told us there was hope." But frightening odds don't mean there's no hope; in fact it's unrealistic to think there's no hope.

The first thing to understand is "median survival time." The classic article about this is "The Median Isn't the Message," by famed Harvard author Stephen Jay Gould. The median is the statistic that's most often published about cancer survival, but it's not the whole story. Here's why.

The median is the middle number in a study. It tells you nothing about the other numbers. The others could be the same or vary vastly.

Example: let's say a study starts with 25 people who have a given condition. When the middle one (#13) dies, that's the median. Did everyone else die the same day? Can't tell. Did the others get completely better? Can't tell. You can't tell your personal odds by looking at the median.

Why do scientists publish the median? Because that's the first statistic they finish. They won't know the average survival until the last person dies, which may be never. And they'll never know yours.

As Gould says, "the median isn't the message."
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And here's where the rubber meets the road: when you're in a crisis, the most important flaw of medians is that the median gives you no useful information about what to do.

So yes, the median can tell you how bad it might be, and that may motivate you to get your butt in gear to improve your odds. But it's not the whole story. Don't let it scare you to death.
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p.s Another copy of that article was posted on the CancerGuide web site, which was handed coded by one of the most senior of all e-patients, Steve Dunn - a kidney cancer patient who founded the "KIDNEY-ONC" kidney cancer community that I used so heavily, on ACOR.org.

In his "Cancer Guide" Steve assembled a phenomenal set of empowering teaching tools about statistics. They're listed in the side menu on that ugly old website :-). If you want, read it.

My approach to life

One of the pleasures of traveling to conferences, as I've done this past year, is meeting people "IRL" (in real life) whom I've only known online. One is Twitter buddy Steve Woodruff (@SWoodruff).

Today, with the big east coast snowstorm, he tweeted about this video - "19 seconds of pure joy." It's his year-old puppy's first snow play. As I watched (with joy), I realized it's pretty much my approach to life. :-)



If you can't see the video, click here.

And thanks to all of you who make it so!

Advice to a Cancer Patient Facing News He Didn't Want

Recently an online friend from long ago introduced me to someone who's got a cancer case that's not going well, looking for any advice and counsel. He wrote today to a big cc list, with unfavorable news (I'm obscuring all details), and I replied.

In the email he expressed understandable concern about the next treatment, discussed his physician's news about the odds, and said he doesn't want to disappoint anyone. This is my response.

Note: I'm not saying anyone should be like me, nor that I'd say this to any other individual. This is just my response to this one person. I'm posting because I hope it will be of use to someone else someday - perhaps light a candle of hope and determination in someone.

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K,

This is not the news we want, but since H. introduced us (as we're both cancer patients) and you cc'd me on this, I'll presume you want feedback and here it is.

(Folks, this will be long, and blunt, so feel free to ignore it.)

First, I feel for you. I faced imminent death (median survival 24 weeks) three years ago so I know what it feels like. For my disease the web sites said "almost all patients are incurable," "prognosis is grim," "outlook is bleak." And I have friends who are still going through this all the time. Visited one today.

And, here I am three years later - my doctor's main advice after this year's physical was back to normal: I should start losing weight, like any middle aged schlumpf.

Remember, probabilities apply to populations, not individuals. Nobody knows what will happen to you, and anyone who says otherwise is lying. Something like 1% of all cancers disappear spontaneously, and science has no answer for that. (And I say that being trained as a scientist - MIT graduate and all that.)

Wisecrack: "Statistically, the average person has one ovary." Absolutely accurate - but it tells you nothing about any individual.

Second, I know first hand that the only useful approach is to find out what's so, find out what your options are, and ask "What's next?" Anxiety is understandable but it's useless. You can unlearn it: it helps nothing, consumes your energy and psyche, and actually weakens your immune system. You may want to get some advice or coaching or therapy or whatever in things like mindfulness, relaxation, or even one of Bernie Siegel's Exceptional Cancer Patient retreats http://www.ecap-online.org/ecap-retreats. My family was going to send me there but I went into treatment first and got better. If I were in your shoes today, I'd do it in an instant.

Two books I like: There's No Place Like Hope and Anticancer: A New Way of Life by an MD who twice beat an unbeatable cancer (brain cancer!), despite his own oncologists telling him it wasn't likely. You wanna be like him?? Sounds good.

Honestly I'm not sure your doctor did you a favor by emphasizing the negative. He may feel an obligation to tell you the odds (some docs are trained that way), but did he also spell out everything you can possibly do to improve those odds? THAT's what deserves your attention. You're already well aware that you might die - okay, so now what are the ways you can reduce that chance?

I'm dead serious about that. Been there, and that's the approach I took.

For instance, what have you been doing to make yourself laugh? Laughter's been proven to be good for the immune system. I had my family send me the whole first season of Saturday Night Live on DVD, and every Bugs Bunny cartoon ever recorded. What makes YOU giggle yourself silly? Are you doing it? (Even if you're dying you can have fun in the process!)

And just to be clear - if you die you won't "disappoint" anyone. Do NOT get into a head game of feeling guilty about having cancer! For heaven's sake. I think you need to get in touch with what YOU CARE ABOUT: say "I will never give up, because I care too much about all of you to say goodbye before I absolutely have to!" THAT is a reason to survive - not to "avoid being a disappointment."

You need to get in touch with why you WANT to be alive, and then do something about it. Even if the odds are bad, like mine were.

You might not survive. So get it in gear, if you want to.

I look forward to hearing YOU talk like this to someone a couple of years from now. :)

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Addendum Dec. 21: see also "Don't Let the Median Scare You to Death"
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Addendum Feb. 16: for a start, see Tim Conway's "Dentist" clip here. You might want to visit the bahthroom first.

What a headline to have in one's scrapbook

This is the start of an item in today's Manchester Union Leader.

Yes, that's Dean Kamen, inventor of the Segway scooter. He's also the inventor of many medical devices that are making life better for a lot of people.  And he and I are two of the "HealthLeaders 20" this year - "20 People Who Make Healthcare Better." My doctor Danny Sands, is another. We're there because of the Society for Participatory Medicine.

On my  business website I acknowledge some of the many people who are making this happen:
Making Healthcare Better through Participatory Medicine

Thanks to friend John Peterson for letting me know about this in the Union Leader.

How to evaluate something like the mammography recommendations

This is a long post because it's not a simple topic. Please don't jump to conclusions.

On the e-patients blog, Gilles Frydman, founder of ACOR, has written one of his potent deep-thinking posts. This time he reflects on how we (humanity) tend to get ourselves in trouble when we frame our thinking in terms of "war on..." It doesn't matter whether it's a skillful manipulation ("war on terror" / "Iraq - 9/11") or unintentional; fear comes from the more primal parts of the brain and can prevent that distinctly human skill, thinking.

This is adapted from a comment I posted.

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Before I start, let me say that I have not evaluated or even read the task force's recommendations. The instant I heard the public reaction I knew there was craziness in the air: insanity, reactions to things that weren't being said, hysteria. And I knew what I'd write about wouldn't be a thumbs-up-orodown post, but how to approach such a consideration as an informed, engaged e-patient.

What does this have to do with being an e-patient? Everything. It's increasingly clear that we can't rely on the establishment (political leaders and news media) to interpret science correctly. Gilles lays out the evidence for that well. We must learn to interpret evidence for ourselves.

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1: The purpose of using statistics

Gilles, thanks for tying this to our previous posts on understanding statistics. PLEASE, people, read last November's short post on understanding statistics. And consider reading the excellent paper it links to.

Look at its incredible evidence that even physicians misinterpret statistics - the example on the second page is specifically about gynecologists being unable to correctly interpret mammography data, unless it's presented quite clearly. The point isn't that docs are dumb, it's that misinterpreted statistics lead to confused, botched conclusions.

See, the purpose of statistics is to improve our guesses when we don't have certainty. Use the tool correctly and it'll help; use it wrong and it'll drive you right off the road into a ditch.

Another example in that article is Rudy Giuliani's ignorant, erroneous comparison of apples-and-oranges prostate screening data from the US and UK - data collected under different circumstances in different environments at different times in life. The reality is that prostate mortality is the same in the two countries, but Giuliani's bogus logic led him to declare that the US healthcare system works better than the UK's.

Right: same mortality rate, but pick some arbitrary statistic and claim that it shows there's a difference, even when the actual mortality rate is the same. Brilliant civic leadership.

REMEMBER, PEOPLE, THE PURPOSE OF STATISTICS IS TO IMPROVE OUR GUESSES. Actual outcomes outweigh interim statistics!

(Not to be outdone, in the UK, Tony Blair declared that his country was doing poorly and must improve 20%.)

STOP BEING IGNORANT. Don't use a tool if you don't know what it's for!

In my annual physical today, Dr. Danny Sands and I again discussed whether I should get a PSA test (prostate cancer test). He first brought it up three years ago, and he (unlike many physicians) made clear that the PSA is notoriously unreliable: many false negatives, and many false positives that lead to unnecessary treatment. That's the kind of advice I like: give me straight-up information about the pros and cons, and let me choose.

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2: Every choice in life has risks.
You cannot evaluate doing something without also evaluating not doing it, and comparing.

See, as with the prostate example, there are risks to screening and risks to not screening.

Many articles have discussed that screening tests (a) cost money, (b) can lead to unnecessary treatment because of false positives, which (c) cost more money and (d) can cause harm.

It's exactly the same as the UK birth control issue. The erroneous public reaction was caused by evaluating one arm of the choice and not comparing it with the other. Result: greater risk of clotting: a botched conclusion with medical consequences. You could call it statistical malpractice.

Just SHUT UP if you want to tell me "Don't take away my tests!!" I didn't say that. Don't be insane, hearing things I didn't say. That's hysteria.

I'm not talking about the conclusion, I'm talking about how to make intelligent choices.

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3. Who gets hurt? The patient.

In a comment on Gary Schwitzer's excellent blog, I said what really upsets me in the mammography insanity is that (ironically!) it's women who are put at increased risk by these misinterpretations: women who are left with less accurate advice.

In a similar way, the first case in that paper is about a 1995 UK scare caused by news that new birth control pills were causing a 100% increase in blood clots. True – but the reality was that they produce 2 clots per thousand women, vs. 1 for the old pills. Literally a one-in-a-thousand difference. But oh wow, that's 100%! Headlines!

Here's the consequence: Because of ignorant misinterpretation, massive numbers of women went off the pill, and in the following year ...

• 13,000 more abortions were done in England and Wales
• 13,000 more births, including 800 under age 16

The special irony is that both abortion and pregnancy have higher rates of clotting than the pill itself. So the whole ignorant diversion was not only ill-considered, it worsened women's health (while increasing abortions and births).

Doesn't it irk you that the righteous protests about protecting women's health, ignorantly considered, lead to bad advice?? These errors in interpreting science harm people.

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4. The idiocy of asking celebrities their opinions

Whatever credibility our network news media had with me, they lost it when they trotted out ignorant celebrities to contribute to the misinformation campaign.

A new blog, the oddly named Celebrity Diagnosis, has chosen the mission of talking about health issues through the lens of celebrity discussions. They cite how dumb celebrities have been on this topic, particularly Jaclyn Smith saying "They want to abandon proven therapies. It's wrong."

Excuse me? Since when is a test a therapy? Jaclyn, is checking your pants the same as laundering them? Maybe that's over your head. So shut the hell up on medical advice, willya?

But that's what Gilles is talking about when he cites moral panic, which the Center for Media Literacy defines as "A sudden increase in public perception of the possible threat to societal values and interests because of exposure to media texts."

And what better way to drive people to panic than fear of death?

But hold on; I've been there. Let's think.

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5: On the fear of cancer and death

When I learned on 1/22/07 that my median survival time was 24 weeks, it was NOT pleasant for me. "No. I am not done. Not ready to go."

But after the abrupt shock, I found myself able to look it in the eye and think. What are my choices? Where do I start?

Twenty years ago I listened to tapes titled "Conscious Aging" and "Approaching Death" by Ram Dass, a spiritual teacher who was born Richard Alpert and who, in the sixties, wrote Be Here Now. After years in Tibet with gurus he worked with many dying people during the AIDS epidemic. (I've seen him speak, and believe me, when he entered the large hall, some sort of presence filled the room. Never seen anything like it.)

He speaks of death matter-of-factly, and his perspective aided my acceptance of what I was abruptly facing. I wasn't interested in going through that door, but after a while I realized that if that's what was happening, I could face it.

And that freed me to have authentic conversations with people about it, and with myself: I was able to choose my path with a clear mind.

I don't diminish the concerns of people who face cancer and/or death - everyone's trip is different. But throughout my cancer journal on CaringBridge.org I talked about the power of the words and concepts we use in discussing our world. I opted not to engage in discussion of "OMG!" and "How terrible!" I chose to think about "What are my options? What could be done that would make any difference?"

If we could all face death calmly I bet we'd be able to make much better choices in how we interpret evidence.

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6: Think.

That's why hysteria (Wikipedia: "unmanageable fear or emotional excess") is so very, very harmful. When people lose their minds, perhaps because they're told foolish misinterpretations of the evidence, what are the odds of reaching a sane conclusion?

Oh wait: we don't have to ask the odds. This time we know.

Well done, Gilles. Obviously you touched a nerve.