Inkwell: Authors and Artists

    
I hear that in both your stories. 

Remember the stage Kubler-Ross identified as response to a terminal
prognosis?

* Denial (this isn't happening to me!)
* Anger (why is this happening to me?)
* Bargaining (I promise I'll be a better person if...)
* Depression (I don't care anymore)
* Acceptance (I'm ready for whatever comes)

Dave, you had what might be interpreted as a terminal prognosis, at
least not hopeful, but I don't have the sense that you were in denial,
then angry, etc. It seems like you responded more logically than
emotionally - "How do I improve the odds?" What do you think about
those Kubler-Ross stages? 
  

    
slip

No, I never felt woe is me and everything I did I made conscious
choices about. The second time around, last fall, when I went through
chemo again, after the surgery, it was much harder. I amassed all sorts
of supplements to take and then felt so nauseous that I couldn't take
most of them. I felt kind of like a failure because of that, but made
my peace with it.

I was very interested and amazed to read about the communication
system at Beth Israel Deaconess. Your doctors sounded like they helped
you to feel empowered in your process and were interested in your life
in a way that mine was not. I changed oncologists once because the
first one was cold and was the one who told me I might die in 5 months.
I had much better rapport with my second oncologist, even though he
was not too interested in hearing about the alternative therapies I was
using along side the chemo and radiation.

This may be a by-product of the HMO mentality at Kaiser. 
  

    
Complex question, which I can't fully answer.

Denial was sure there - throughout my googling, I was totally "There
must be a way out."  The denial ended pretty quickly when I found there
WAS no way out.

Otoh, as soon as I found the patient community in ACOR and they said
all those websites were wrong, my denial sort was proven right. :)

I don't recall anger, at least not as distinct from the first. Otoh,
within a couple of weeks we had a treatment plan, and I was no longer
facing certain death. 

And yet, without question my way of being (as it says over and over in
the book) was "Reality is what it is, whether I know it or not." I
made a BIG point of not making up anything in my head: you could say my
byword was acceptance of what's so. 

Finally, I had coaching from my sister Suede, who was with many people
during the AIDS epidemic as they went through the final passage. She
said everyone deals with it differently, so however I felt, there was
no right or wrong about it. 

I did face death, and I didn't like it, But then I just got in gear -
which in my case meant learning what my options were, partnering with
my doctors, and getting it in gear.
  

    
"Reality is what it is, whether I know it or not."

I loved that, and I felt similarly. My thought was "either I'm going
to die from this, or I'm not." And I just had to keep doing something,
aiming towards the future. I found a lot of support on the WELL and
wound not have survived as successfully without this community. I also
found that my way was to keep asking for ideas and suggestions from all
sorts of people, figuring that the larger my network, the better.
  

    
Love that, Julie. 

Re support on the WELL - do you mean specifically medical support, or
the sense of connectedness, of belonging, of the existence of people
who care whether you're alive?
  

    
A little bit of all of that and more. I had recently moved to North
Carolina but my insurance was still in Californian (COBRA). So I came
back for what I thought would be a quick visit to a doctor to get the
swallowing problem straightened out. That was in Oct, 2006. I stayed
with old family friends but then had to move out after about 5
months--the mom's cancer came back and she was in hospice and the five
kids were coming back and i was just starting radiation and chemo. I
stayed in two different WELL households, one I stayed in for the next 6
months. Also people here gave me suggestions that were helpful as well
as amazing emotional support, especially the women in the WOW
conference (Women of the WELL).  I had plenty of people who cared
whether I was alive, but I used the WELL sort of like a blog. I could
write about my process and lots of people were there to give advice or
just listen and be supportive.

I didn't hear about the CaringBridge till last year. 

I have noticed that some people with cancer or a similarly
life-threatening illness retreat and keep their process private, and
that works for them. I was the opposite. I sent out a regular email to
a large group of friends and acquaintances about what was happening, in
addition to my posts on the WELL.
  

    
Hi, Dave, and welcome. I've been riveted by your book.

On august 29 2006 I was diagnosed with an aggressive stage IV
mediastinal lymphoma. I didn't have medical insurance and I was living
down in Louisiana at the time so I had to go to the nearest public or
"charity" hospital. The treatment I received was suboptimal to say the
least. I never even met my oncologist, and rarely saw the same resident
twice. It was a nightmare.

Then to add insult to injury, I didn't qualify for free care because I
had a small retirement fund. Essentially I fell through the cracks and
ended up losing everything. Like Julie, I wasn't the sort otretreat
into privacy. I was loudly public and brutally frank about my whole
experience. I blogged about it here:
http://spinningtumor.blogspot.com/2006_11_01_archive.html

Anyway, I didn't have the same options you had about choosing a doctor
or hospital. I didn't have a doctor I knew or trusted or even whom I
could communicate with. Cancerland is an entirely different universe
for the uninsured. The residents I saw at the 2-week oncology clinic
visits were just passing through on six week rotations. They were
allotted less than 5 minutes per patient, they knew next to nothing
about specific types of cancer, and English was a second language for
all of them so communication could be extremely challenging. Trying in
vain to get answers from them frequently left me in tears of rage and
frustration.

The way I looked at it was I had only one patient, only one disease to
learn about, a background in science, full access to the internet, and
absolutely nothing more important to do with my time than learn
everything there was to know. So I did whatever it took to become my
own damn expert. And one of the most helpful things was finding online
support groups, for cancer in  general, for lymphoma in particular, and
best of all for my own fairly rare type of lymphoma. 

I met patients and survivors online who had access to the top lymphoma
specialists, the best cancer centers, the leading experts in a very
specific type of lymphoma. I got to hear about their theories and
opinions and cutting edge approaches. I was able to use this
information on several occasions to persuade the faceless oncologist I
never met at the charity hospital to alter my treatment, but it was
always an epic battle, and more often than not I was stonewalled and
ignored. 

And yet! Four years later I'm still dancing with NED, at least as far
as I know. I still don't have insurance, and I've moved to a different
state so I don't even have the crappy Louisiana charity hospital, which
means it's been over 2 years since my last CT scan (and I never had a
PET scan, which is the recommended screening). I'm 100% on my own.

So I guess my biggest question for you is, so much of what I've read
so far in your book seems to be oriented toward folks who have decent
health insurance. What about the 40+ million Americans who are under-
or uninsured, who have no access to adequate medical care? How can your
message be relevant to them?
  

    
Thanks, <leroyleroy> - powerful story, important question. This struck
me, too, and I was telling Dave offline yesterday that we should be
consider how participatory medicine works (or doesn't) for those who
don't have insurance, or don't have really good insurance, therefore
lack access to the care and treatment. You make the point very well:
what good is it to learn of a revolutionary new treatment if you can't
pay for it? Are medical advances reserved for a (shrinking) elite? 
  

    
Totally agree. I was only able to go to Duke for my surgery because I
was on disability for two years and thus elligible for Medicare. I got
disability very easily, which is very unusual, because esophageal
cancer is usually fatal. If that hadnt happened, I don't know what I
would have done. I have been looking for steady work that comes with
health benefits for three years with no luck. 
  

    
Leroy, AWESOME story.  The chance of being in your situation is more
real to me than you might imagine - I'd been in a financial disaster a
few months before the diagnosis and the chance I might have been
unemployed at this time was plenty vivid. 

Your closing question surprises me, so I must have been unclear about
something in the book.  In my view what you did entirely PROVES that
networked patients have plenty they can bring to a healthcare
encounter.  I usually express it as partnering with physicians - but
you proved it can be done WITHOUT physicians.

The e-Patient White Paper mentioned in the book (at e-patients.net)
makes the case that patients can create enormous value because of the
internet. You seem to be an extreme example, and extremely powerful. 
You should write something for our "I am an e-patient" series
http://e-patients.net/archives/category/others-epatient-stories.
(Seriously.)

Where's the patient community you found?
  

    
I guess the point I was trying to make was that only SOME of what I
learned online I was able to bring to my case, but MOSTLY they ignored
me and stonewalled me. Finding someone who would listen and respond was
next to impossible, there were simply no channels to get through. And
I was educated and vocal and articulate, not to mention physically &
mentally able to be proactive and persistent. Yet 90% of the time even
my simple requests for standard recommended procedures like PET scans
or a bone marrow biopsy were ignored or would be strangled in endless
red tape and catch 22s.

I would learn some important information, wait six weeks for an
appointment, then wait 6 or 7 hours to see a doctor. I would bring in
documentation and studies and have my request neatly summarized with
bullet points and references. And then when I finally gained an
audience more often than not the resident du jour would just shrug,
walk out of the examining room, and never come back. No response. Then
a nurse would come and throw me out of the room, and there was nothing
at all that I could do.

So yes, online networking DID give me plenty that I could bring to a
healthcare encounter, but I wasn't able to do much with it since the
other side was not receptive. I was not, and am not, powerful at all.
It's pretty much random luck that I survived not just the disease and
the treatment but the healthcare system itself. I've published versions
of my experience in several places besides just the blog, but nothing
has changed because of it.
  

    
Leroy, I don't know what to say except that sounds disgusting. Like,
what good does it do to be informed and educated if there's nobody
competent and committed to do the right thing, empowered or not?

Ugh.

So what riveted you about the book?
  

    
Leroy, I'm wondering if you think you were ignored solely because you
didn't have insurance, and if so, was it because they felt they
couldn't really follow up because there was no way to cover the cost?
Or was it something about the character of the physicians where you
were?
  

    
Jon, it was the nature of the public healthcare system, the entire
place was trying to serve the uninsured population in a region with the
highest poverty rate in the nation. The system is always overcrowded
and underfunded, dirty, inefficient, impersonal, inhumane, and totally
overwhelmed. And it was the nature of modern medicine in general:
overworked residents who haven't slept in 48 hours, rotating through
oncology for a few weeks, trying to get through an impossible patient
load so that each patient averages 4 minutes or less. If you ask a
question they can't answer, or challenge something they've been told by
the attending oncologist, they just shrug and walk out. Nobody has
time or incentive to deal with it.

Dave, I'm always riveted by other people's cancer stories and yours is
powerful and very well told. It's a good read.
  

    

Dave, any chance of a Kindle version of your book in the near future?
  

    
Dave, it's interesting to consider the contrast between your cancer
story and <leroyleroy>'s. You've been talking to a lot of patients and
physicians since you became an evangelist for participatory medicine -
what do you see happening in a larger context? Do you see the potential
for change from contexts where we have "overworked residents who
haven't slept in 48 hours, rotating through oncology for a few weeks,
trying to get through an impossible patient load so that each patient
averages 4 minutes or less"? Or do you have a vision for a change that
could occur?
  

    
Lena, yes, Kindle and eBook any day now.
  

    
JonL, 

As you know, I started studying healthcare just a couple of years ago
(as a hobby, and now as my work), and the first thing I learned is that
it's vast, like way big. I liken it to the Pacific Ocean, and I'm a
guppy: what I know about the Pacific Ocean is solely what I've run
across in my just-keep-swimming existence.

I say that as preface because I don't claim to have a grip on it all -
I can only say what I've seen. And there may be massive exceptions and
differences I haven't seen.

Having said that:

In some places, brilliant innovations and breakthroughs are happening.
In others, it's a cesspool of dysfunction. Beyond the disgusting
circumstances <leroyleroy> described, there's tons of evidence that our
payment systems are no longer aligned with better care, much less
prevention. Then there are the cultural obstacles - docs who believe
that everything they've always done is of COURSE right.

The solution, long story short, will be for us to increasingly take
matters into our own hands, enabled by the internet and by finding
networks of people like us.
  

    
We've talked a little about ACOR - can you say more about those
conversations, and about some of the other organizations that are
supporting patients who, as you say, "increasingly take matters into
our own hands"?
  

    <scribbled by jonl Fri 3 Sep 10 10:50>
  

    
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you can still participate by sending comments or questions to
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JonL,

That's a big question - suffice it to say, there's huge and real
evidence that patient communities today are very very enabled by the
internet to connect and share experiences, which lets them/us create
real value (medically and thus economically) in healthcare episodes.

There's a pretty moving 8 minute video today on Kelly Young's
rheumatoid arthritis blog. It rocks that she so exemplifies an
empowered, engaged patient and had been so for years before ever
discovering the concept - she just WAS it.  The vidpost:
http://rawarrior.com/video-rheumatoid-arthritis-doctors-treat-patients/

Another example is Robin Smith's blog about living with Cushing's, a
condition where apparently *most* doctors are off base, as evidenced by
the many patients who've discovered useful answers among the patient
community - some too late.

http://survivethejourney.blogspot.com/

I always point out, I'm not saying "doctors are wrong" - that would be
stupid. I was saved by great doctors. I am saying doctors are no
longer the only source of value in healthcare - engaged empowered smart
patients can do terrific things. And I'm saying sometimes doctors ARE
wrong, and sometimes (as <leroyleroy> relates) docs aren't available.  

And in any case, it's valid and worthwhile for patients to get in the
game and contribute what they can. One of the best ways to do that is
to find patients like you.  Which today is not always easy, but it's
what I want us all to work on.
  

    
I'm hearing that physicians are frustrated that patients find
misleading or wrong information on the Internet and "waste their time"
having to roll out explanations and clarifications. How do you respond
to that concern?
  

    
Heck, I'm frustrated too, when I find bad information - *all* of the
info I found about kidney cancer treatment options on approved /
certified websites was out of date!  

I'm even more frustrated about all the patients who show up on ACOR
having received out-of-date info by their physicians.

I think what we all need is an awareness that current information is
evolving faster than anyone can be expected to keep up with, so it's
legit for patients to go searching - and there's value in teaching
everyone how to vet info.

When I occassionally bring in something my docs haven't seen, I say
"What do you think about this?" and the response I often get is "Let's
find out."
  

    
The way I looked at it is doctors have many patients to treat and many
different diseases to know about, whereas I only had one patient and
one disease. I could focus much more time and energy on details of the
latest research and theories.