Jon Lebkowsky (jonl) Mon 30 Aug 10 14:20
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."
Jon Lebkowsky (jonl) Mon 30 Aug 10 14:23
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?
e-Patient Dave (epatientdave) Tue 31 Aug 10 14:53
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 dont 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, thats what Ill call it. And here we are.
Jon Lebkowsky (jonl) Tue 31 Aug 10 15:52
<scribbled by jonl Tue 31 Aug 10 16:28>
Jon Lebkowsky (jonl) Tue 31 Aug 10 16:29
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?
Dave DeBronkart (epatientdave) Tue 31 Aug 10 16:39
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.
Jon Lebkowsky (jonl) Tue 31 Aug 10 16:43
But you did eventually have noticeable symptoms? Or were they noticeable only because you were now aware that you were ill?
e-Patient Dave (epatientdave) Tue 31 Aug 10 17:25
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.)
Jon Lebkowsky (jonl) Tue 31 Aug 10 17:30
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?
e-Patient Dave (epatientdave) Tue 31 Aug 10 17:37
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?
Jon Lebkowsky (jonl) Tue 31 Aug 10 17:39
How did you approach that question? And how did that catalyze your transformation from Dave to Patient Dave to e-Patient Dave?
e-Patient Dave (epatientdave) Tue 31 Aug 10 17:50
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.
Jon Lebkowsky (jonl) Tue 31 Aug 10 17:56
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?
e-Patient Dave (epatientdave) Tue 31 Aug 10 18:16
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.
Jon Lebkowsky (jonl) Tue 31 Aug 10 18:28
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?
e-Patient Dave (epatientdave) Tue 31 Aug 10 18:42
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.
Jon Lebkowsky (jonl) Tue 31 Aug 10 21:11
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?
e-Patient Dave (epatientdave) Wed 1 Sep 10 08:55
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.
Julie Sherman (julieswn) Wed 1 Sep 10 09:24
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?
e-Patient Dave (epatientdave) Wed 1 Sep 10 10:16
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?
Jon Lebkowsky (jonl) Wed 1 Sep 10 10:36
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?
Julie Sherman (julieswn) Wed 1 Sep 10 14:37
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.
Dave DeBronkart (epatientdave) Wed 1 Sep 10 18:11
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
e-Patient Dave (epatientdave) Wed 1 Sep 10 18:14
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"?
Julie Sherman (julieswn) Wed 1 Sep 10 18:36
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.
e-Patient Dave (epatientdave) Wed 1 Sep 10 19:18
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?
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