Jon Lebkowsky (jonl) Wed 1 Sep 10 19:42
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?
Julie Sherman (julieswn) Wed 1 Sep 10 19:56
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.
e-Patient Dave (epatientdave) Wed 1 Sep 10 20:09
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.
Julie Sherman (julieswn) Wed 1 Sep 10 20:29
"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.
e-Patient Dave (epatientdave) Wed 1 Sep 10 20:47
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?
Julie Sherman (julieswn) Wed 1 Sep 10 21:09
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.
leroy (leroyleroy) Wed 1 Sep 10 21:44
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?
Jon Lebkowsky (jonl) Thu 2 Sep 10 05:26
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?
Julie Sherman (julieswn) Thu 2 Sep 10 07:30
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.
e-Patient Dave (epatientdave) Thu 2 Sep 10 12:32
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?
leroy (leroyleroy) Thu 2 Sep 10 13:19
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.
e-Patient Dave (epatientdave) Thu 2 Sep 10 19:06
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?
Jon Lebkowsky (jonl) Thu 2 Sep 10 19:30
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?
Elizabeth Churchill (leroyleroy) Thu 2 Sep 10 20:49
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.
Lena M. Diethelm (lendie) Fri 3 Sep 10 00:27
Dave, any chance of a Kindle version of your book in the near future?
Jon Lebkowsky (jonl) Fri 3 Sep 10 05:28
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?
e-Patient Dave (epatientdave) Fri 3 Sep 10 06:30
Lena, yes, Kindle and eBook any day now.
e-Patient Dave (epatientdave) Fri 3 Sep 10 06:38
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.
Jon Lebkowsky (jonl) Fri 3 Sep 10 10:46
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"?
Jon Lebkowsky (jonl) Fri 3 Sep 10 10:48
<scribbled by jonl Fri 3 Sep 10 10:50>
Jon Lebkowsky (jonl) Fri 3 Sep 10 10:51
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e-Patient Dave (epatientdave) Fri 3 Sep 10 11:13
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.
Jon Lebkowsky (jonl) Fri 3 Sep 10 13:01
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?
e-Patient Dave (epatientdave) Fri 3 Sep 10 14:03
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."
leroy (leroyleroy) Fri 3 Sep 10 15:29
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.
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