Friday, July 18, 2014

You Thought My Attitude Was Bad Before?

I find it interesting that the feedback I’ve gotten from this blog (from the four or five people reading it, so I can't extrapolate too far) has divided into two camps: there are those who think the posts reveal a healthy and positive attitude toward the cancer experience; and then there are those who think the exact opposite and, as nicely as they can, let me know that I’m not expressing enough optimism and my expected survival would be improved if only I had a more positive outlook.

Not to put too fine a point on it, but the latter group is starting to annoy me. 

I love you all dearly, but really? You really think my fundamental problem is my attitude, rather than the malignant tumors that are currently taking over my liver?

I’ve been thinking about this for a couple of days now, ever since I received an email with a link to a survivor’s story on a website somewhere that encouraged me to follow her lead and change my attitude to be more in line with the survivor's. She was convinced she could be cancer, and did, so I could and should do the same. The question is, why do people think that the difference between cancer survival, and not, is a function of attitude?

After spending some time with the Google, I think I’ve identified the answer: the entire freakin’ world thinks cancer survival, or not, is a function of attitude. Which, when you think about it, basically boils down to a bunch of people telling me that whether or not my cancer treatment is successful has nothing to do with the type, state or progression of the cancer, nothing to do with the doctors and care providers that are available to me, nothing to do with the treatment options I have to choose from, it’s all about my attitude. If I choose to be appropriately positive and “fight,” then my cancer will wither away and die; but if I choose otherwise, then I will.

But why do so many people believe this? Personally, I blame Lance Armstrong.

Let's think about Lance for a second. We all know Lance Armstrong had, and survived, testicular cancer. So which explanation do you credit for his survival?

Option 1 – Lance had a fighter’s attitude and was committed to surviving, so he did.

Option 2 – Cancer aside, Lance was in incredible health. His body was in such amazing shape, not only could he actually complete in the grueling competition that is the Tour de France, but he was able to win in multiple times (and yeah, he cheated, but cheating was the difference between coming in first or coming in the top ten, not the difference between finishing the race or not). Moreover, having won the Tour de France numerous times, Lance was -- what’s the word I’m looking for? oh yeah... -- rich. Being rich gave Lance a vast range of alternatives for his cancer treatment. He could see any doctor he wanted and opt for whatever treatment he thought best. There were no constraints on his health care options. Altogether then, because he was in amazing shape to begin with and had access to the best care possible, Lance survived.

What boggles my mind is that Option 1 seems to be the answer that most people choose. And as crazy as that seems to me, in truth I suppose I understand. Anyone (myself, perhaps, excepted) can have a good attitude, but very few will ever be in the kind of shape and have the kind of money and options that Lance had. Why wouldn’t someone prefer to identify the difference between life and death as the resource they have access to (attitude) rather than the ones they don’t (athleticism and money)?

But in many ways, Lance is just a particularly illustrative example of a much broader problem with how cancer is all too frequently discussed and presented.

Let’s assume for the moment that people with cancer a) either survive or die, and b) either have positive attitudes or negative attitudes. Reality is no doubt more complicated, but for purposes here we can ignore the complications. So with these two binary variables, we get a matrix for cancer patients that looks something like this…

Or, for those who don’t read matrices, we wind up with four groups of patients:

Group A – People who survived cancer and had a positive attitude
Group B – People who survived cancer, but had a negative attitude
Group C – People who did not survive cancer, but had a positive attitude
Group D - People who did not survive cancer and had a negative attitude

But here’s the thing: the only group anyone wants to talk about are the folks in Group A. Look at the survivor pages on the various treatment center webpages, and all you'll read about are people from Group A since those people survived and have positive, affective stories to tell. Moreover, the people in Group C can be presented as members of Group A, at least until the moment it becomes clear they aren't, actually, going to survive long term. 

The consequences of all the attention on Group A are two-fold: first, everyone forgets that there are also people in Groups B, C and D; and second, without those counterexamples, it becomes all too easy to think that they key to survival is a positive attitude.

But those other groups do exist. I’m growing tired of this subject, so I won’t bother running through all of them -- utilizing instead the classic dodge from a course in formal logic: “the remainder of the proof is left as an exercise for the reader” -- but I will say that it’s extraordinarily easy to find representatives from Group C. 

Just Google three words together -- obituary, cancer, and fighter -- and then weep for

...Eleni Vavas, a cardiologist who died at 37 from a rare stomach cancer.

...Ty Campbell, nicknamed the “Little Fighter,” who died of a rare brain cancer at the age of 5.

...Julia Wolf, a devoted mother who died of skin cancer at the age of 30.

...Talia Castellano, the adorable young girl who posted makeup tutorials to YouTube while she was being treated for her cancer, who died of neuroblastoma at age 13.

...and thousands more. 

I find it hard to believe anyone could look at how these people lived out their lives and say attitude has anything to do with survival.  


I know everyone means well. I know everyone just wants the best for me. But please, please, please try to remember that cancer is an indiscriminate killer. Cancer kills people who are convinced they’re going to get better, and it kills people who are convinced they’re going to die; at the same time, people who are convinced they’re going to survive do, and people who are convinced they’re going to die don’t. There is no rhyme or reason, and attitude is, at best, an extremely small factor in a much larger constellation of forces.

My attitude isn’t going to determine the outcome of my cancer. My cancer and its response to the treatment will do that.

And by the way: if you really think my problem is that I need to have a more positive attitude, just be aware that telling me so is likely not going to have the desired effect.  You won't get a positive outlook. What you'll get is a blog post like this one. 

9 comments:

  1. Also in Lance's favor: he had a form of cancer that responded well to treatment and had (probably still has) a high cure rate. Short form: he was lucky.

    You might be interested in this article on this topic: https://www.bostonglobe.com/lifestyle/health-wellness/2014/07/17/stuart-scott-espy-speech-omits-mention-dying-good-death/KzknUpJiYp3QoPQe3X614L/story.html

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    1. That is a GREAT article. Thanks so much for the link. One of the most frustrating things about this whole ordeal is you can't get a straight answer from providers on the quality of life question. And in my opinion, that ought to be the most important question.

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  2. Wow John, you sure have a bad attitude! You should turn that frown around... er how does that stupid saying go?

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    1. You aren't the first to accuse me of it, though most, I think, are more serious about it than you.

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  3. Hey John, this is Patty, your Minnesota Sister-In-Law,
    I have to tell you, I sincerely appreciate your honesty and everything you are sharing. As someone who truly cares, albeit from a distance, I want to hear the good, the bad and the ugly. While I'm hoping and praying for a happy Hollywood ending; I tend to agree that attitude has limited impact on the outcome. Just keep being you and thank you for keeping it real.

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    1. Thanks, Patty. I'm certainly all for a Hollywood ending.

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  5. you don't know me -- I'm one of those people who know people who know you, but not in any important way that can get you anything more than a cup of coffee or a post to this blog. I couldn't agree more. wish I had more time on the porch with my mom and wish I had been able to articulate, as well as you have, the deep seated, fundamental disagreement I had with others on this particular point.

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    1. It's sort of sad how many people have regrets about how they managed (or didn't) the death of a loved one. Coincidentally, the "Dear Prudence" column in Slate last week had a couple of letters on the topic. One from a woman who regretted preventing her mother, who had been a chain smoker for 50 years, from smoking during the last weeks of her life, and another from a person annoyed that their brother had put their 91-year-old father on a strict diet. Crazy.

      I'll take whatever time the universe will allow me, but it's far more important to me that neither I, nor the people I leave behind, look back with regret on how my last days were managed.

      I'm sorry your mom's passing left you feeling you missed something. No fun, that.

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