Laugh, Sing, and Eat Like a Pig: Facing death, with hope

An excerpt from Laugh, Sing, and Eat Like a Pig.

Laugh, Sing, and Eat Like a Pig: Facing death, with hopeLast month Dave deBronkart, known on the internet as “e-Patient Dave,” released his first book, Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and what healthcare can learn from it) (www.LaughSingBook.com).

It’s his personal cancer story – excerpts from the journal he kept on CaringBridge.org in 2007 – interwoven with blog posts about how he later discovered the e-patient movement and became its best-known blogger and spokesperson. Today he’s a frequent participant in Washington policy meetings and speaker at industry conferences.

But this post has nothing to do with policy. As Dave worked on the book he realized a new chapter was needed, something he’d never blogged about but which confronts thousands of newly diagnosed cancer patients every day: the very real prospect of death in the foreseeable future. Here, in the first excerpt published anywhere from Dave’s book, we present that chapter. It appears in the storyline just before treatment begins, with median survival 24 weeks.

Facing death – with hope

Before the story continues I want to lay the emotional foundation. First I looked death squarely in the eye. Then, regardless of the odds, I chose hope.

Reflecting on these days later, my wife Ginny had these thoughts:

We could see that the cancer had spread. We were both sort of silent, in our own worlds, thinking about the possibility of him not being there. We had a few nights of crying.You have to talk honestly about how you feel every day. We’re sort of silly people anyway, so it wasn’t a stretch to continue to be that way. He loves to do plays on words. It wasn’t hard for me to fall into that pattern. We all die someday. We want to have the best time we can while we’re here.

We thought, well, if there are only 6 weeks or 18 weeks, let’s live it. We checked the wills, the power of attorney. Dave took on the fight. I would support him any I way I could.

* * *

Facing death

People who’ve faced imminent death share a certain awareness. If you’ve just joined those ranks, welcome. You should know, some of us live through it, and some don’t. You will be one or the other.

In my most desperate moments one question gripped my mind: “What can be said that will make any difference?”

I vividly recall realizing it was over. In my speeches I talk about realizing I’d never see my daughter’s children, and they’d never know me. I talk about lying awake that January night, realizing my memorial service might be a few months away. Would it be May? September? What would the weather be like that day, as people gathered?

My father’s memorial service was fresh in my mind, so my thoughts were vivid. What would my mom’s face look like as she said goodbye to her son?

“Prepare yourself to follow me.”

I’d had some preparation for this moment.

In my 40s for some reason I took an interest in aging and death. In the library I’d found recordings of Harvard psychologist Richard Alpert, an associate of Timothy Leary; Alpert went to Tibet, found a guru, and took the Sanskrit name Ram Dass, “servant of God.” In “Approaching Death” he cited a tombstone inscribed,

As I am now,
so you will be.
Prepare yourself
to follow me.

He talked about ministering to many people as they went through this final transition during the AIDS epidemic, and more years working in hospice. Somehow his words rang with wisdom for me as he combined the perspectives of Harvard, ancient Egyptian scriptures, and modern practices of Tibetan monks, often expressing them with the humor of a New England Jew.

My musician sister Suede was a similar influence closer to home. Like Ram Dass she had worked with AIDS patients during their final passages. (Her first album includes the deeply moving song “The Ones Who Aren’t Here,” which was written during the AIDS epidemic.) “Everyone deals with this differently,” she said. “There’s no right way.”

When I realized I was in that state their words came to mind. “Death soon” was so real that I asked my doctor what it would feel like at the end. He thought I meant pain, so he assured me I’d be kept comfortable. I said no, I was thinking about the passage itself: “What will it be like at the end? Will my lungs shut down so I’ll be short of breath? Something else?”

Radical acceptance

I was prepared to let my experience be my experience, expecting nothing, with nothing wrong: my feelings would be whatever they were, and I would stay mindful.

Terry Wilson, a member of my ACOR kidney cancer group, told me of “radical acceptance,” a concept discussed by Dr. Marsha Linehan. It combines western cognitive-behavioral techniques (altering how we look at things) with eastern practices for mindfulness, distress tolerance and acceptance. Radical means complete and absolute. And that’s the space I found myself in: “All right, this is what’s so. Let’s get to work.”

Acceptance of one’s situation, seeing it as it is, doesn’t mean giving up. To the contrary, it gives one a firm place to stand, attached to reality, with no energy-sapping resistance. Here’s the point of view I came to.

  • Am I dying? Yes. Ram Dass quotes someone who said “Being born is like setting sail on a ship whose purpose is to go out in the ocean and sink.”
  • Am I dying now, of this cancer? Nobody knows. You can learn about the odds, more or less, but odds apply to large populations, not individuals.
  • I won’t die of cancer if I live long enough for something else to get me.My ACOR patient community quickly taught me that the game is to live long enough for something else to get you. This might seem crazy, but think about it: if you feel trapped, like you can’t escape cancer, it helps to know it might not get you. Examples:
    • If you live long enough to be killed by a bus, cancer didn’t kill you. HA!
    • If you live long enough for a cure to be developed, the cancer didn’t kill you.
    • You might live long enough for a treatment that makes it a chronic condition, not fatal. (Yes, there are some cancers that are now managed as chronic diseases – they’re not fatal!)
    • It’s not unusual for an autopsy to discover a cancer that nobody knew was there. They died of something else. Cancer doesn’t always kill people.
  • I had some warning. Some people don’t. 1200 people woke up today in the US and got dressed, not realizing it was for the last time: by midnight they’ll fall to sudden cardiac death. They had no chance to think things out, prepare, respond. I, at least, had a warning, a chance to get it in gear.
  • You might get better for no apparent reason. It happens. A small percentage of all cancers disappear spontaneously, and science doesn’t know why. It is not scientific to say there’s no chance of this. (I wouldn’t bet my house on it, but my mind was completely open to the possibility.)
  • Until I die, I’m alive every day. That’s certain.

“I don’t know. But we will try.”

At a Christmas party in 2008 I met a kidney cancer specialist from another hospital, a marvelous grandfatherly Greek. We talked about hope, and he said he’s changed his answer when patients ask if they’ll get better.

He used to say it’s not likely, and he’d watch the life go out of them. “Now I tell them, ‘I don’t know. But we will try. Will you work with me?’”

And he adds, “Just one thing: if we succeed, you must drive carefully. We don’t want to save you and have it wasted!”

You don’t have to survive, you know. You may decide you’ve had enough, now is your time, and you choose to let go.

Or, you can choose to try everything. Or try until you’ve had enough. To me the question is, do you have something worth living for? A future worth living to see? If so, let’s get to work.

* * *

About hope

Hope is a resource. A real, scientifically verified resource.

Jerome Groopman MD’s excellent book The Anatomy of Hope: How People Prevail in the Face of Illness cites evidence from well controlled experiments: when challenged, patients’ bodies perform differently based on their minds’ expectation.

We’re not just talking about their experience of pain – scientists measured substantial difference in their physiological response, comparable in strength to a drug. Dr. Groopman calls hope “a catalyst in the crucible of cure” and concludes, “There is an authentic biology of hope.”

Movingly, he describes decades of being with patients as they faced probable death, and his journey as a physician learning to help them deal with it. Today he writes:

Hope, unlike optimism, is rooted in unalloyed reality. … Hope acknowledges the significant obstacles and deep pitfalls along the path. True hope has no room for delusion.

Clear-eyed, hope gives us the courage to confront our circumstances and the capacity to sumount them. For all my patients, hope, true hope, has proved as important as any medication.

I’ll repeat: hope is now science, not speculation. If you don’t believe it, read the book.

He says hope has two components – belief and expectation. I’ll paraphrase it: when you believe there’s no hope, your biology shifts: it’s as if your cells give up, your system gives up; your body doesn’t do as well as it could if it had hope.

Being scientific about the unknown

Science can get arrogant, saying “If we don’t have evidence for something, don’t believe it.” But there’s another saying: “Absence of evidence is not evidence of absence.” History is full of things that were true long before science figured it out. Consider:

  • Oxygen was oxygen, doing what it does, long before Priestley figured it out in 1774.
  • Bacteria were bacteria, doing what they do, long before scientists proposed the germ theory of medicine in the 1800s. (When bacteria were proposed, science was incredulous: infections were being caused by an invisible evil creature? Why, that’s witchcraft! But it was real. Science just hadn’t figured it out yet.)
  • DNA was DNA, doing what it does, long before Watson and Crick figured it out in the 1950s.

And hope was doing what it does – whatever that is – before the experiments Groopman cites. Perhaps it’s related to how PNI (psychoneuroimmunology) works: thoughts (psych) measurably affect the nervous system, which measurably affects the immune system.

Reality is what it is – whether we know it or not

This is the first instance in this book of a recurring theme:

Reality is what it is,
regardless of what we think
and whether we know it or not.

There may be pathways to recovery that science hasn’t found yet. And one of them might have your name on it. Or not: how would I know? The point is that there’s a world of undiscovered reality, and not a soul can tell you something won’t happen. They can tell you it’s bloody unlikely, but they can’t say never.

Besides, what are you going to do when science runs out of answers? That’s the world I live in. My oncologist, Dr. David McDermott, told me my odds of a relapse were 50%, and we have no way to predict the outcome.

I went home and thought … and I wrote a post about evidence-based medicine. It began:

“On the fringes of medical knowledge, lives are at stake and medicine doesn’t have the answers yet. What do you do?”

“We came to give you hope”

My best friend is a rigorous and deep-thinking scientist named Dorron Levy. He’s a former co-worker, a brilliant guy who now lives in Israel. When he learned of my diagnosis he shared my login for my PatientSite [patient portal] with his brother, a leading physician in Israel, who read my data and told him I was basically screwed.

Dorron’s family was shaken, and as described in the last chapter, they visited for a long weekend. It was costly: four short-notice plane tickets, hotel and all. And since at the time I still had the financial stress of owning two houses (I had just moved back to the Boston area from Minnesota), they insisted on buying all our meals.

I recently said to him “You must have felt you were coming to say goodbye.” He replied, “Nothing could be farther from the truth. I was certain you would make it. We came to give you hope.”

Hearing this from a high priest of evidence made my jaw drop. He said, “Dave, in physics right now there are two contending factions – reductionism and emergence. Reductionists want to eliminate all confounding variables to get repeatable results. Emergence is the study of what tiny influences lead to new patterns as the chaos unfolds.” His action in “giving hope” was an injection into the chaos.

“An incredible life force”

In 2009 my oncologist, Dr. McDermott – one of the best scientists in the world for this disease – capped it off, saying “You have an incredible life force that everyone who worked on your case was aware of.”

Amazed, I thought to myself, “Where’s the evidence for that?” But his word’s good enough for me. Until you decide it’s your time to go, don’t give up hope. You have no idea what might happen.

* * *

And so, we began treatment. First, remove the diseased kidney.

Dave deBronkart, also known as e-Patient Dave, blogs at e-Patients.net and is the author of Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer and Let Patients Help!

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  • http://survivethejourney.blogspot.com Robin

    Folks, you need to read this book. Dave has already taught me so much about why things are as they are in the healthcare system. I’ve learned so much from him in so many ways, but this is his personal account while dealing with cancer. He talks about what an e-patient is: empowered, engaged, equipped, and enabled. As a Cushing’s survivor, l got a kick out of his “Four Early Lessons in Patient Empowerment”:

    1. It’s up to me.
    2. When your instincts say scram, scram.
    3. If they think your feelings are YOUR problem [emphasis mine], you might want to find someone else.
    4. It’s worth traveling to find a doctor you work well with. [My favorite]

    Invest in the book, a box of tissues, some healthy snacks, and a good drink. You won’t want to miss it. I understand so much better what once just made me angry. Knowledge is power, but understanding is the tool for change. Dave is changing how people think in healthcare, and that is more than powerful. It is awesome.

  • metastatic chick

    I’m glad that e-Patient Dave has had such success in meeting the challenges of his illness. And yet, this excerpt makes me cringe inside. As someone with metastatic cancer, I often hear from friends and others who have read accounts of people who appear to have cured themselves of cancer by having the right attitude. The media loves to trot out this theme. The suggestion is that anyone who is sufficiently upbeat can prevail over their cancer. And, by extension, that anyone who does poorly must have the wrong attitude.

    Are we to believe that everyone who died of cancer or fell in the statistical bottom half of their prognostic cohort had a poor attitude or, as e-Patient Dave implies, no longer had a reason to live? This is cruel and flies in the face of many people’s experience. It is so disheartening to feel blamed for one’s illness and its outcome.

    People with hepatitis or diabetes or broken bones do not get told to adjust their attitude. They are offered treatment regimens and told to stick with them. But cancer patients, particularly those without solid treatment options, are constantly urged to “think positive.”

    Last year my own cancer unexpectedly ceased to spread. I cannot discern any change in my beliefs or expectations or behavior that could explain this. If my cancer starts to grow again, please don’t tell me that it must be because I’m somehow no longer sufficiently hopeful. It’s tempting to think that we can control the course of disease by our thoughts, but this idea can also be an enormous burden to place upon those who are ill.

  • http://participatorymedicine.org e-Patient Dave

    Metastatic Chick,

    First, thanks for speaking up.

    Second, no no no no no, I do not assert that I “cured myself” with my attitude. I know of people with stronger attitudes who died. In NO way should anyone think that death comes from failure to be strong enough or have the right attitude.

    I wrote this to put something into the ears of people who, as I did, fea that there’s NO hope. I vividly recall thinking “Is this it?? Is it over? Is there no chance I’ll survive?”

    Nobody, least of all me, can identify why my tumors went away. I got a potent treatment, and I used everything at my disposal, including attitude. But the response could be random, as I say – some tumors do that.

    This chapter is meant to be about facing death as a real and present possibility. And, facing it, being at choice about how to be.

    As of today, there’s a 50% chance my cancer will recur, and the docs have no advice on how to influence which half I’ll be in.

    And as I said, everyone faces this differently – there’s no right way.

    • metastatic chick

      Thanks for your reply, e-Patient Dave.

      We have many points of agreement, particularly the notion of radical acceptance.

      I have not read your book, only this excerpt. I don’t mean to mischaracterize your thoughts. These things are subtle and complex, and you have the right to spell out your own experience and not be lumped together with all the yahoos who attempt to enforce a nervously blissed-out attitude toward cancer.

      But . . . you reference literature that suggests that patients who are hopeful have a better outcome (and I have read of similar studies that reach different conclusions, by the way), you describe how your oncologist was struck by the special quality of your “life force,” and you emphasize the importance of a patient’s beliefs and expectations. And your reply to my comment lists your attitude as part of your arsenal for fighting cancer. These things make me think that you are at least among those who hazard a possible association between a “positive attitude” and remission or cure.

      But maybe your point is more that an optimistic outlook is a psychologically helpful stance—even if not a downright therapeutic option—and that every cancer patient can legitimately claim that sort of hopefulness for himself or herself. I’m trying to understand.

      I think it’s a very good thing to discuss how to live in the face of mortality, a rather more imminent mortality than most folks expect to experience. For me, radical acceptance precludes actively choosing to believe something (positive or negative)—the outcome is simply uncertain and one needs to learn how to maintain a steady mind in the face of that. As it turns out, this leaves me feeling pretty happy. But I know it’s different for each person. There are so many ways to cope.

      Peace,

      metastatic chick

      • http://participatorymedicine.org e-Patient Dave

        Metastatic,

        Apologies for taking two days to get back to you. I wanted to read and reply thoughtfully.

        First, I have to say, I don’t claim to know how it all works. I don’t know how I got the cancer (nor does my oncologist) and i don’t know for a fact why it went away. I wrote to him, about this discussion, and he said (consistent with Joe) that without IL-2 there’s no question I would not be where I am today.

        But, he also says that I was so sick at diagnosis, and my reaction to the treatment was so rough, that I could not have tolerated ENOUGH IL-2 to make a difference, if I hadn’t had the strong will that I did, and the understanding of the purpose and the arc of the treatment. He says those came from my being an informed, engaged patient with a strong attitude.

        That was really interesting to me, because we’d never split that hair before.

        Re other literature: I dunno, I just know, as I said at the top, that I chose hope. We DO know today about psycho neuro immunology, which (40 years after the famous experience of Norman Cousins, who apparently laughed himself well) gives us some science to understand why: we can’t see laughter eating a tumor, but we can now see mood (psych) affecting the nervous system (neuro), and we can see that affecting the immune system (immunology).

        To each his own – as I said above, I believe there’s no right way – it’s deeply personal. I chose hope, and fortified it with the plausible evidence I could find.

        btw, over on Brass & Ivory, Lisa Emrich posted another small excerpt Tuesday, which discusses how to relate to this thing inside me – which I myself grew: “Whose cancer is it, anyway?”

  • Peggy Zuckerman

    I must agree with the writer who also has metastatic disease that it is disheartening at best, insulting at worst, to be told that a “positive attitude” will cure cancer, keep it dormant, etc. The patient is somehow assumed to have brought this on oneself, and not being perky enough, let the cancer grow! This type of advice is generally given by someone who holds pink crystals in one hand, and refuses to immunize children properly.

    The battle for accurate information–from a truly knowledgeable physician who has many weapons for this fight–is enormous as it is, without this type of well-meaning drivel chipping away at one’s armor. Others won’t like the use of militant language, but I find that it is essential to keep that aggressive idea of fighting, search for more armaments and strategies far more helpful than the platitudes. But wait; I loved hearing those who were kind enough to say that they would pray for me, as they at least understood that I needed help from all sources!

    Peggy Zuckerman

  • http://participatorymedicine.org e-Patient Dave

    Hi Peggy – you’re not saying that *I* say a positive attitude will keep cancer dormant, are you? We know each other pretty well, I think, from ACOR … just checking.

    I do know (also from ACOR) that some people have been told that, but that’s as idiotic as the person who told me “All you need is properly ionized water.”

  • Jan

    I can totally relate to the comments that when one has cancer, one doesn’t want to hear that attitude can make a difference in the outcome. I’m a two time cancer survivor, breast and bladder, and believe me, there are still many days I wake up and can’t find a positive attitude about cancer anywhere in my psyche.

    But trust me, that isn’t what Dave is saying in this book. The book is an emotionally compelling story that any cancer patient can relate to. The roller coaster of emotions. The anguish and the hope. The courage we all must have in the face of our disease.

    And most of all, endless ideas how we can be our own advocate, to improve our own situation. Maybe being an empowered patient will improve our outcome, maybe it won’t. But I for one feel a whole lot better having been empowered through my cancer journey. And that is really what this book is all about.

  • joe

    re: “Nobody, least of all me, can identify why my tumors went away”

    My understanding epatient dave is you received high dose IL-2. You fell into that small subset of complete long-term remissions which is the goal of this, as you know, very intense immunotherapy. Honestly though, is this unexplainable? no. For both renal cell and melanoma (until ipilumamab is approved) it is the well-known best therapy out there for stage IV disease. Congrats on your response.

  • http://survivethejourney.blogspot.com Robin

    Hey, folks… First of all, Dave said this chapter describes the state he was in BEFORE treatment began! All of this was when he had no idea what his outcome would be!
    ” It appears in the storyline just before treatment begins, with median survival 24 weeks.”

    Secondly, “joe”, 20% is not great stats (I believe I’m remembering that right) no matter what the illness, and to me it is reasonable for Dave to say he really doesn’t understand why he had a good outcome and others didn’t.

    Most of all, you must read the preface and the rest of the book to see what this first chapter really is leading into. I’ve read the whole book. No, I haven’t had cancer, but I have fought (and hopefully finally beaten) a major disease for close to 30 years. My dad has had and fought/beat melanoma. The message in this book is one for both the patient and his physicians, but mainly, it shows the role we need to play in our own care and healing. It is appropriate for any person who will be or is a patient, or has a loved one who is or will be. That’s just about everybody at some point in life.

  • Tammy Russo

    It amazes me that my father, a man of unending faith, but not a man of science, truly embraced much of what ‘s written of in this chapter.

    Quite frequently these days, I have epiphanies about my father and about his transition away from us–a temporary ‘away’, I hope. Yesterday I was hit by a brick wall when I realized that perhaps, in all my research and hope and optimism and cheerleading, I’d neglected to let Dad express his fears and to really talk about how he felt. That thought makes me incredibly sad; I wanted to deny my father absoslutely nothing. But knowing him, he wouldn’t want to worry his family either, so perhaps it all worked out the way it should have. Doesn’t it always?

    At any rate, my father was blessed with a passing void of any pain at all. He ended his time here as he lived it–calmly and peacefully. He simply grew more and more fatigued, to the point in which he couldn’t maintain wakefulness even during meals or conversations. My brother was with him 24/7, while I flew in and out, believing that Dad had emerged victorious from a far graver condition less than a year earlier, and he would certainly do so again (yep, another DEEP regret). Being around at ALL times, my brother got the gift of some incredibly lustrous pearls–snippets of my father when he regained enough stamina to share.

    Two simple sentences he uttered during that time speak volumes: “Because that’s just the way it is.” and “Step by step.”

    I pray that these thoughts were not evidence of Dad giving up, but rather of his clinging to his faith and to peace. Now if only I could find the same anchors that my Dad did. . .

  • http://www.medicalbilldog.com Dennis (Investigator/Negotiator) at Medical BillDog

    First, I loved the book. I’m still loving the book on the second read, and I usually don’t re-read anything. I think grad school did that to me. I had so much to read, so much to translate, and so much to analyze that I never wanted to read anything again unless it was absolutely necessary. Every book I re-read is time stolen from one more new book I could be reading. Still, I’ve really enjoyed Dave’s book. I love the way it bounces in and out of chronological sequence. I love the asides and insertions. The format, with its four-dimensional look at Dave’s experience and the experience of cancer in general, reminds me of John Brunner’s experimental science fiction novels Stand on Zanzibar and The Sheep Look Up. Sorry, that’s the English major in me taking over the conversation and dragging it off on another tangent.

    As for the argument that this book blames the dying for their own failure of vision or their failure of attitude or faith, yes, I admit that I, too, had that impression. At the beginning. Occasionally, Dave does interject that he had decided to live, does say he decided that he wouldn’t accept sub-par care. It’s easy to read that kind of didactic mode as “anyone who dies must have either accepted the death or accepted sub-par care.”

    Easy, but false.

    Yes, Dave gives advice based on his own experiences, and doing the opposite of what he suggests just might have lost many lives. Talk to Regina Holliday. Her husband received sub-par care, and I don’t think he realized as much until it was too late to matter. Dave also discusses his own fears and sorrows in facing impending death. He knows his attitude alone wasn’t going to save his life. He admits that while he hoped for full recovery, he knew the dark other possibility was still looming. My grandfather succumbed to cancer, and while he was still lucid, even he said you can never give in to something like that. When the HDIL-2 begins to work, Dave rejoices in being one of the lucky 20%. I don’t think it’s fair to condemn his rejoicing in his own survival. Yes, 80% do not have Dave’s luck, but that tragedy is not Dave’s fault. I would add to that bit of luck with HDIL-2 a reminder that Dave’s cancer was found early, almost by accident. The x-ray that discovered a metastasis in his lung was for a shoulder injury. If not for that shoulder x-ray, it’s hard to say exactly when Dave would have found out about his cancer. Would the weeks it took for the pains to start also have been enough to slash his survival chances? Surely. How much? I doubt anyone could say with any certainty.

    Also, I don’t know who did the editing for this article, but I love it. You hit most of the high points. You only missed one of my favorites: Dave’s discussion of the mathematics of statistical analysis and Stephen Jay Gould’s point that The Median Isn’t The Message. You wouldn’t think a math lesson would be so much fun, but Dave’s trip through the definition of median and how it affects one’s outlook reads like a flowering epiphany.

    So, yeah, I have to agree with Robin, “Folks, you have to read this book.”

  • Dave’s Wife

    Dear Metastatic Chick, Might I suggest that you actually read the book and gain some insight as to our experience and Dave’s persistence in fighting his disease with every tool available…including finding the best doctors, location, attitude, ACOR.org, other people’s experience etc. After facing the fact that he might miss out on a whole lot of life, we decided to not miss another minute of happiness! We laughed, he sang with his barbershop chorus, and he FINALLY could eat like a pig without worry of getting fat.
    PLEASE read the book . It is less than $20 on Amazon

  • http://participatorymedicine.org e-Patient Dave

    As fate would have it, today I received video of a talk I gave to other kidney cancer patients in June. It’s up now, here.

  • Jan

    This comment written above by Dave I find very interesting:

    “But, he [Dave's doctor] also says that I was so sick at diagnosis, and my reaction to the treatment was so rough, that I could not have tolerated ENOUGH IL-2 to make a difference, if I hadn’t had the strong will that I did, and the understanding of the purpose and the arc of the treatment. He says those came from my being an informed, engaged patient with a strong attitude.”

    I struggled mightily with the fact that I could not muster a positive attitude, much less hope, during the days (and actually months), after my second cancer diagnosis. I wished I could, but I just couldn’t. But I sure had a fierce will to fight my disease and overcome it.

    Dave’s comment makes me realize that that strong will to fight is probably what saw me through those dark early days. And having that strong will DID make a big difference in how I handled the disease, how I related to my doctors and my treatment, etc. So maybe a positive attitude and hope weren’t essential for me to be an engaged, empowered patient.

    I find this an interesting discussion going on on this blog. Thanks to all who have participated. -Jan

  • http://www.runningahospital.blogspot.com Paul Levy

    Thanks to you all for this wonderful exchange. See here: http://runningahospital.blogspot.com/2010/08/hope-be-not-proud.html

  • http://participatorymedicine.org e-Patient Dave

    Paul Levy has written a sensitive and moving post about this post, these comments, and his own experience of being with people as they face death.

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