Inkwell: Authors and Artists

    
It's my pleasure to introduce author and blogger .e-Patient Dave.  
deBronkart. Over the next couple of weeks, we'll be talking about _Laugh,
Sing, and Eat Like a Pig_, which is the title of Dave's book, and also
advice he got (probably not in so many words) from one of his physcians
when he was dealing with cancer.

Dave was diagnosed in January 2007 with Stage IV, Grade 4 renal cell
carcinoma (kidney cancer). The cancer had progressed to a late stage; the
median survival time at diagnosis was just 24 weeks. With tumors in both
lungs, several bones, and muscle tissue, his prognosis was .grim,. as one
web site described it.

However Dave received "great treatment" at Boston.s Beth Israel Deaconess
Medical Center, where his surgeon removed the extensive mess
(laparoscopically!), and the Biologic Therapy program got him into a
clinical trial for the powerful but severe High Dosage Interleukin-2
(HDIL-2). His last treatment was July 23, 2007, and by September it was
clear he.d beaten the disease. His remaining lesions have continued to
shrink. Dave has a blog and knows how to use it; he was actively
journaling online throughout his treatment - those journals are reprinted
in his book, a clear an uncompromising account of the patient experience.  
He's become an articulate and eloquent spokesman for participatory
medicine, defined in Wikipedia as "a movement in which networked patients
shift from being mere passengers to responsible drivers of their health,
and in which providers encourage and value them as full partners." Dave
and I were both cofounders of the Society for Participatory Medicine, and
Dave is curator of the Society's blog at http://e-patients.net.

I'm in the odd situation of having to introduce myself as leader of this
discussion. I'm Jon Lebkowsky, a longtime member of the WELL and host at
Inkwell. I write about culture and technology, and I have a reputation as
somebody who can make things happen, and by day I'm often working as a
project manager. From my web site: "People variously describe me as an
author, strategist, cultural commentator, web strategist, media maven,
advocacy theorist, and futurist. I may be all of those things, but my
trajectory is consistent: I'm an instigator, I like to make and do cool
things, and I try to make a better world."
  

    
Welcome, Dave - I've really been looking forward to this discussion! I
said a little about it in the introductory post, but can you expand on
the origin of the book's name?
  

    
I thought you'd never ask...:)

This book is about being empowered, not a victim. IMO an empowered
person is aways at choice, not at the effect of things. Even when
things are clearly bad, we choose how to be about it.  I created the
game that no matter how bad the odds, I would laugh, sing, and eat like
a pig. 

No kidding - it grew out of my ad hoc response to the news that I had
a lethal cancer, riffing on advice I got in the first few weeks:

    * “Laugh” is for the healing power of laughter (per Norman Cousins
in his book Anatomy of an Illness as Perceived by the Patient." I
figured my odds might suck (median survival 24 weeks) but I'd clutch at
anything.

    * “Sing” is the advice my doctor gave. I had asked if I should
drop out of my chorus to save energy, but he said, “You don’t want to
stop doing life activities that you love – it sends the wrong message.”
Wow. So, I figured, laugh and sing! 

I believe in the power of what conversations we put out into the world
around us, so I was overt in saying this to everyone around me. 

    * “Eat like a pig” came from the diet the hospital sent me, to
increase my caloric intake, to combat weight loss and prepare for the
battle ahead.  I'd read that if cancer starts consuming you, it can
eventually start cannibalizing muscle, which is Not Good (cachexia). So
the hospital gave me explicit instructions about putting real whipped
cream on desserts, etc. (I'm not making this up.)

In my online community (CaringBridge.org) I told people “If I ever
write a book about this, that’s what I’ll call it.” And here we are.
  

    <scribbled by jonl Tue 31 Aug 10 16:28>
  

    
Your cancer was pretty far progressed by the time you discovered it.
Looking back, do you think there were signs something was wrong that
you missed? Or had you felt perfectly healthy?
  

    
No, there's no doubt, this was a sneaky sucker. I was getting tired
earlier in the evening, but what the heck, I was 56. My appetite was
dwindling, but nothing dramatic, and not unnatural for aging - a
general slowing-down. So I was losing weight, slowly, but that was a
victory - it was convenient that my appetite finally reduced!

I read recently that a tough part of being a doctor is that the body
is a complex system with a zillion things that could go out of balance,
but only a handful of symptoms that show up on the surface. I wonder
how many diagnoses could explain those symptoms - in addition to
advancing middle age.

My cancer was discovered "incidentally," as they say: after a physical
I had a routine shoulder x-ray, and they said "By the way, something
showed up in the lung, near that shoulder." I had sent my doc a memo
before that visit, listing the issues I wanted to cover. In it I'd
noted a *feeling* that for the first time in my life, I felt that my
options were closing down, not opening up. And for the first time ever,
I felt somewhat depressed. But that too was natural enough - a number
of life experiences made that an entirely sensible feeling. And while
that feeling might be a clue to malaise, it sure wouldn't say "Watch
out, sounds like cancer."

How could I be almost dead and have no obvious symptoms? Such is
kidney cancer: either you get it in just the right spot, so you have
symptoms early (usually blood in the urine), or it's not in the right
spot and it grows - slowly - for a long time.  The kidneys filter the
blood and send it right to the heart, which pumps it at full force into
the lungs. My kidneys deposited tiny death pellets into the blood,
which got stuck in the first tight place they found: the lungs.  At
diagnosis I had five significant tumors growing in both lungs, the
biggest the size of a golf ball.
  

    
But you did eventually have noticeable symptoms? Or were they
noticeable only because you were now aware that you were ill?
  

    
I vividly recall the first moment of pain, though we didn't realize it
was cancer. I was visiting family in Maryland, seeing a niece's play,
when suddenly my left knee hurt like hell. I thought "NOW what??"  I
wrote in my journal, "I'd like to go back to where all I had was cancer
- at least that didn't hurt."

A short time later I wrote "Be careful what you wish for," because an
x-ray showed that the cancer had (again silently) eaten a big hole out
of my femur.  12 weeks later it snapped - I have a pile of snazzy metal
in that leg. (Which, btw, does not set off metal detectors.)
  

    
What was your emotional response when you got the news - were you
terrified? And how did that evolve and change as you got into the
experience of being a patient?
  

    
It was dread. This came out of nowhere, and everything I read said it
was usually fatal and it was incurable.

Within 10 days the lung tumors had been traced to the kidney. We
didn't know for certain it was kidney cancer until they did a biopsy
and looked at the cells, but once we saw the big honkin' dark spots in
the scans, we pretty much knew, and I started googling. 

I used every trick I've ever known to find a way out - googled my butt
off, looked for more and different answers. I found "Outlook is
bleak." "Prognosis is grim." "Incurable."

When the biopsy did confirm it, I woke up at 1 a.m. that night, unable
to get back to sleep: "Holy crap. This is IT. It's ENDING." 

I was NOT ready for this. Not happy days.  But then after the shock,
we were left with the real question: Okay, what are my options?
  

    
How did you approach that question? And how did that catalyze your
transformation from Dave to Patient Dave to e-Patient Dave?
  

    
I was using "Patient Dave" on my hospital's blog long before I got
sick.  In January 2007, as soon as the diagnosis was confirmed, my
primary physician Dr. Danny Sands handed me a slip of paper that said
"ACOR.org," which is a network of totally low-tech ASCII listservs.
(ACOR = Assn of Cancer Online Resources.)  THERE, and noplace else, I
got a ton of advice from smart patients who were also in the cauldron.

As it happens, I was already at one of the few hospitals my patient
peers said is great with this disease. Not surprisingly the hospital
was already thinking of trying Interleukin on me, if I could qualify
medically.  But I was sure determined to go wherever I needed to - I
was not ready to pack it in.

It wasn't coincidence that I was at a top hospital, Beth Israel
Deaconess. As the book's prolog describes ("Four Early Lessons in
Patient Empowerment"), I'd learned years earlier to be responsible for
what care I was getting.  This hospital was an hour from my home, but I
wanted to be in a good place if the stuff ever hit the fan.
  

    
Can you say more about the experience of corresponding with other
patients via ACOR? And (because I know you've thought a lot about it)
how these sorts of conversations change the game for patients with all
sorts of conditions?
  

    
This was the most natural thing in the world for me. In 1989 on
CompuServe I banded together with "victims" (aka users) of desktop
publishing vendors that offered mediocre support; we shared workarounds
and stuff you couldn't find in the manuals. If all the cancer manuals
say "You're screwed," it makes perfect sense to turn to the users.

These conversations don't just change the game, they pretty much prove
that the establishment version of the game is waaaaay out of date. The
idea of listening only to the establishment is great, but it turns out
to be just a rule of thumb. Everyone's goal is to find the best, most
reliable, most action-worthy info. Perhaps the establishment was the
best route to that, a generation ago, but today savvy patient
communities can go way deep on their disease, which hardly any doctor
can afford to do.

I know it's ironic that smart patient communities (enabled by the
internet) could (sometimes) have more useful info than a local doctor
but it's true.
 
Note that I'm not saying doctors suck. That would be idiotic. I'm no
physician, I couldn't have diagnosed myself, I wouldn't have come up
with the treatment I received. The point is just that today patients
have access to vastly more info and informed peers than a generation
ago. The world has changed, and it's real.
  

    
Well, a patient has so much at stake - it makes sense that you would
approach your condition with a singular focus and learn all you could
about it, developing a real expertise. On the other hand, you don't
share the physician's expertise, and he's coming from a context of
disciplined study, intense training. I think the patient and the
physician may both bring a lot to the table, so peering, forming a
partnership for treatment, makes sense.

How did your physicians react to your involvement in patient
communities and your online research? Did they support it?
  

    
I'm having intense deja vu (about this thread, not the disease). 

My physicians were absolutely tops. They were top of their own craft,
AND empowering to me. This is why I just snort when I hear some
ego-jerk of a doctor say "Look, who's got the doctor's degree here?"
Knowing a lot is no justification for being an interpersonal jerk.

Yesterday I was on a concall with other patients who had the same
treatment I did. I was aghast: some of them had not been at all
prepared by their clinicians for how tough the treatment would be.
THAT's sure disempowering: "It's better if you don't know." Ugh.

Of course, I was *steered* to the online community by my primary
physician. 

The key here, the whole thing about "participatory medicine" as we're
now calling it, is partnership.  When I find something interesting and
relevant, I don't come to my doctor and say "Hey stupid, why didn't you
tell me about this?" I say "What do you think?"

And I listen to the answer, because if I didn't trust his answer, I
wouldn't be there.  As the prolog relates, I'd voted with my feet in
the past.
  

    
I know we all hear how tough chemo can be, but we rarely hear the kind
of firsthand accounts that were included in your book. How did your
physicians prepare your for the treatment, and how did the actual
treatment go?
  

    
The treatment was rough, as expected. Kidney cancer has no known sure
cure, and besides, these days docs realize that any cancer can come
back, so their language is more precise: they talk about a "complete
response" or "NVED" - no visible evidence of disease.  

The only thing that produces a complete response to Stage IV kidney
cancer (i.e. it's metastasized to elsewhere in the body) is HDIL-2,
high dosage Interleukin-2. And that usually DOESN'T work.  I read that
it works in 7% or 13% of cases - poor odds but it beat the crap out of
giving up.

The drug's website says, correctly, "side effects are often severe and
rarely fatal." 

Here's the thing: Ironically (or not), I already knew all that *before
my docs talked to me about Interleukin.*  As soon as I spoke up on the
ACOR.org listserv, I found out about IL-2. Better yet, I gathered
stories from 17 people who'd been through it, and got a great spectrum
of experiences.  I vetted it with the clinical team (they said "Yup,
that's pretty much it"), so I was well prepared when I went in.

And that was powerful, because NOTHING that happened during this
arduous treatment came as a shock. Hard, but just as expected.
  

    
So great to have you here Dave. I read your book with great interest
as I am an esophageal cancer survivor. I was diagnosed around the same
time as your were--I started radiation and chemo in March, 2007. I also
used ACOR.org resources--the esophageal cancer mailing list. I had
somewhat different experiences than you did, however. 

Everyone on the list was hell bent on surgery, called the cancer The
Beast. I didn't want to do surgery if I didn't have to and I didn't
like anthropormorphizing (sp?) the disease. I also wanted to use
alternative therapies along with the chemo and radiation--acupuncture,
Chinese herbs, and other supplements. No one wanted to hear about that,
including my doctors who were astounded at how well I tolerated chemo.


I started having trouble swallowing food in the spring of 2006. It
didnt get bad till September and it took till the end of October for me
to get a CT scan that showed a 20 cm tumor at the juncture between my
esophagus and my stomach. It took a while after that for them to nail
down a cancer diagnosis. I lost a lot of weight, and I owe my life in
part to the fact that I was very obese. between the summer of 2006 and
the summer of 2007 I lost over 100 pounds. Losing weight is easy when
you cant swallow.

I was NED by August, 2007, without surgery. Unfortunately, my cancer
came back in June, 2009. This time I opted for surgery and by then I
had moved to North Carolina where Duke Medical Center is a center for
esophageal cancer surgery. I went through chemo again last fall and am
doing really well now. Who knew one could live without one's esophagus?
  

    
Hi Julie - congrats for kicking it, and especially congrats for being
your own person. 

As I'm sure all WELLians know, different communities develop different
personalities and "shoulds." You're the first person I've heard from
in a different ACOR group. I'm glad you had your head on straight
enough to be yourself.

Do you know the book "Anticancer" that I mention, by Servan-Schreiber?

I gotta ask (being cancer beaters we can be biologically blunt) - so
what do you do, without an esophagus? Do you have a tummy tube, or
what?
  

    
I hear more stories these days about cancer survival and less about
cancer mortality. Is a diagnosis of cancer less scary than it used to
be? 
  

    
In answer to your question about how one lives without an esophagus:

The operation (there are several kinds) removes most of the esophagus
and the top part of the stomach--basically the area around the
juncture, which is where most esophageal cancer starts. Then the
stomach is moved upward so it forms sort of a tube, and is attached to
what is left of the esophagus. So the side effects are somewhat similar
to bariatric surgery in that the stomach is smaller. Too much sugar
can cause "dumping" when the food goes too quickly through your system
and one gets cramps and diarrhea. I havent had any dumping episodes in
many months. The other problem is that one's stomach is not made to be
a tube and there is scar tissue at the surgical site. Both of these
things can cause the stomach-ophagus to start closing in and one can
have trouble swallowing again. WHen this happens you need to get
scoped--sort of a roto-rootering of the tube. Some people need many of
these scoping procedures, some a few and some never need it. I had my
surgery a year ago in July, 2009, and had my first scoping in March. I
am again having some trouble swallowing food so I have another scoping
scheduled for Oct 1st. One of the problems that EC patients have is
keeping their weight up. Some EC patients continue to have cramping and
pain with eating. I have been lucky in that I don't have that trouble.
One is supposed to eat smaller meals more frequently after the
operation. 
  

    
Jon, I could have sworn I replied to this hours ago. Oh WELL!:)

> Is a diagnosis of cancer less scary than it used to be? 

As Ringo said in Yellow Submarine, "It's all in the mind, y'know." I
sure was scared. NOT happy; I was NOT ready to close up shop for this
lifetime.

And I can't talk about "than it used to be" because I'd never been
there before.  

I do know there are about a zillion escape hatches today - ways you
can "not die of cancer."  So yeah, it scared me spitless at first - and
then I got to work rationalizing what my options were.

I think there's enormous power to how one chooses to face death, never
mind the treatments. I ended up writing a new chapter about it,
including finding hope.  Then my publisher and I decided to post the
whole chapter, for free, on the KevinMD blog.

http://www.kevinmd.com/blog/2010/08/laugh-sing-eat-pig-facing-death-hope.html
  

    
Julie, 

In my own process of facing death I found myself quite happy to
negotiate: "Stay alive but perhaps never do xyz again? Sounds like an
okay deal to me."  Do you have that feeling about your eating
situation?

Do you ever feel like "Every one of these days is a day I might not
have seen"?
  

    
Because the tumor was so large (20 cm or 5 in), several doctors
thought the cancer would be farther along than it was (I was given
brain and bone scans because they thought it might have spread there).
I was told that I might not live more than 5 months. I found that
cancer has a great way of clearing the mind. I set some goals. The
first one was that I would live to see my niece's bat mitzvah
(scheduled for Nov, 2011). Somehow I didn't think it was my time to go
and I worked very hard to make that true. I didn't get a clear cancer
diagnosis till March, 2007, so I had about 6 months of really not
eating, and just trying to figure out what I wanted to do, doing a lot
of research, etc.

For various reasons I really did not want to get the surgery the first
time around, a decision I have no regrets about. I didn't trust the
medical system I was in (Kaiser). Once I realized that, everything else
kind of fell into place, so far as what kind of treatment I wanted to
undergo. The negotiations I made were more about what was important or
not important to me at any given time. There is a chapter in Traveling
Mercies by Anne Lemott when she is talking about something completely
stupid ("does this make my butt look fat?")to her friend with cancer
and the friend says, "You don't have that kind of time." That is how I
felt--very focused on things that were important, not wanting to put up
with anyone's bullshit. I wish I could have bottled that feeling, as I
could use that focus now.

It was funny, not eating made and makes food more important and less
important at the same time. I am a total foodie so it was very hard not
to be able to eat or drink. On the other hand it is Just Food, and not
as important as living. Food is still very important to me, but at the
same time not important at all.
  

    
I think I hear you about it being both very important and not
important. I find there are things I could absolutely live without, but
which I (paradoxically) therefore cherish just as much - they become
simple but wonderful pleasures.

Like, it's just so DAMN GOOD TO BE ALIVE.

> cancer has a great way of clearing the mind

No kidding! 

> bottle that feeling

To some extent I still have that feeling. I feel more free to be, and
far less wrapped up in other people's malarkey.

That's not to say I don't get mad - I do - but I don't get *hooked* by
people's crap.  And I feel more authentically present than before.

======

I hear empowerment all through your story - I don't hear a trace of
woe is me or "they made me do x."  Si?