Tuesday, December 29, 2009

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.

Tuesday, December 22, 2009

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??)

Monday, December 21, 2009

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.

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!

Sunday, December 20, 2009

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."

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.

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!

Friday, December 18, 2009

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.



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. :)


Addendum Dec. 21: see also "Don't Let the Median Scare You to Death"

Addendum Feb. 16: for a start, see Tim Conway's "Dentist" clip here. You might want to visit the bahthroom first.

Wednesday, December 9, 2009

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.