Bill Keller: cancer blogging may give "false hope" to other sufferers


#1

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#2

Christ, what an asshole.


#3

This is just an example of the essential narcism of Keller and the establishment media in general.

I can't remember when we held the meeting and decided that the legacy media decided what was ethical for bloggers. Perhaps I was sick that day.

Is the New York Times going to apologize for giving people false hope that Geroge W. Bush was competent and his case for invading Iraq was honest rather than the opposite?


#4

Can we also talk about his wife writing a piece just a few days ago about the very same thing for the Guardian? That was also some kind of weird pearl clutching about whether or not Lisa Adams should share so much? Which just makes me think they are both jerks and he's too lazy to come up with his own pieces.

Also, why just pick on Lisa? Why not also Jay Lake and his five years of cancer blogging?

This makes me so angry.


#5

He is a man, with good hair, in a Doctor's uniform; how can I not trust him?


#6

What funruly said. Unless you've been through it, you have no idea. What a horrible thing to champion.


#7

You know, I don't think he was criticizing her. He was just saying that those who don't, or can't, put as much effort into the battle as her deserve recognition too, and aren't "failures" for it. The key phrase I took from it, that suggested to me where he was going with it, was .."But her decision to live her cancer onstage invites us to think about it, debate it, learn from it." I think that's all he was trying to do, to reflect on different approaches to how people deal with it. But its a touchy subject for obvious reasons, so...


#8

Personally I think it's the Times that should get picked on here, for continuing to print this guy's work, and for all the other clickbait they print. They keep asking me to subscribe, and I keep not subscribing, because articles like this appear to be more the rule than the exception with the Times now. I wonder when they are going to switch to tabloid format and start publishing a page three to up their click count.


#9

Exactly! Bill Keller was not so much criticizing her blogging/tweeting per se but the ideal of fight a desperate battle to the end and the glorification of such struggles as opposed to the ones that just give up and at least suffer less in their final hours.


#10

I agree with what I understood as his main drive: We must be careful about lionizing those that choose to fight against all odds, because that implies that those that do not are "weak" - even if their choice might be the one that leaves them with more quality time and less pain.

I wouldn't have used a named person as my example, though. She is a public figure, and she does illustrate his point, and it is still a bit tasteless.


#11

Having lost my wife to breast cancer that had metastasized to the brain after a six year battle, and a brother to brain cancer 2 years later- I was quite interested to go back to the original op-ed pieces and review Amy's blog as well. There's a lot to digest here-much of it sad and thought provoking. We all look at things through our own experiences and it colors much of what we think and how we react. My wife had her DM at SK early on and I have nothing but good things to say about the dr.'s and the institution. Unless you've been through this with a loved one or are going through it yourself-it's hard to explain to someone how your view point on these matters can change radically and continue to evolve. We too were raising three children and of course that drove every decision. Our youngest was 4 and she made it past the 10th birthday-6 priceless years for us all. Yet, there wasn't an easy transition once the brain became involved. Even at the time we knew the ground rules had changed-but it was not something that we could really acknowledge-even to each other. That was tantamount to giving up -something that's really not socially acceptable in cancer unless you're under hospice care. Things moved too quickly in the end for that shift for us and I'm sad about that now.

I definitely have some sympathy for the intentions of Keller's here. It's easy to question their motives based on selected quotes, but I think a deeper reading and giving them the benefit of the doubt as to their own experiences gives them some latitude here. I think the questions asked ought to be aired in public- not that I agree with them 100%-because that’s how change comes about. Cancer and it’s treatment is still taboo for most and shrouded in shadows. There are problems with the way people characterize the cancer struggle-and I think it puts undue pressure at times on those involved.

It is incredibly sad what Amy is going through-and troubling to read. It’s hard to witness that much pain-regardless of your level of experience. I wish peace to her and her family and friends.


#12

Keller actually uses the experience of his father-in-law to juxtapose against Adams' experience. In other words, the experience of an older man, whose child(ren) were not only grown but married, versus the experience of a mother whose children were 8, 4, and 6 months old at the time of her diagnosis.

Words fail me.


#13

Um. No. Do you have cancer? Have you had cancer? No? Then you simply are not qualified to judge. You have no idea. And for that, I am sincerely grateful.
Losing someone to cancer is not the same thing a actually having it. Trust me on that.

Me? Yep. I have cancer. And even I would not judge. Xeni can write whatever she likes, so can Adams. They are not me or you. Their experience is their experience, their opinions are their own. We're all different. My first gig was as a candy-striper at the City of Hope on the cancer ward. I saw things there no kid should witness - but I saw what I didn't want in my life. The people there are wonderful. The practitioners, amazing. But those are the worst cases in the world. And on ly the people willing to have all kinds of body parts amputated or chemo-ed. It's still ugly and horrifying. I will not live like that - ever. If you want to? Fine. Go for it. But, subjected anyone who loves you to that? Nuh-uh. I would not.

Look - he makes some points there - the whole Pink Ribbons thing has turned into a corporate nightmare of big bucks and slick marketing. And they have cured jack all in decades with hundreds of millions.
And, it's another 'War on' something - with just about as good a result as the others. Cure? Since when? Didn't happen. And all your good wishes helped not one bit. You cannot even say that your money went anywhere particularly useful or even just promising. All those many, many 'unproven treatments' don't get tested, because they do not benefit the money-makers and 'stakeholder'...if you don't count actual people with cancer.

Fight? Hey - nobody hands you a rifle and a target. There is none. Oh, bemoan the many who will not become research subjects? Screw you. The hundreds of million already spent didn't
fix that, and neither will another $50 k. What stops them from participating are things like...ohhh - being sick already? Not wishing to (or being able to) tolerate being made even more sick? That 'Aushwitz Look" they see all around them when they roll into a large cancer center? Even in some cases (Moffett in Tampa) being required to answer government surveys as a requirement prior to receiving any treatment whatsoever. Or, unethical situations such as being denied various treatments because you are 'not a candidate' - then, you find out later that you not only are a candidate - but you were lied to, simply because they do not happen to own the equipment required for that treatment.

Thing is, the moment you hear that word? You are first in deep shock. But then, all the things you thought you would accomplish that could matter somehow. And all the people you thought matter to you and you to them. And all the ideas and beliefs that blow up right in your face when reality hits them. Some people will decide that they want that 'I matter somehow', no matter the cost. It's not heroic - it's an ego thing - the most essential ego thing there is. But I still cant criticize them - they get to. Hell - if you can't do that? what's the point? But, I choose not to do the heroics. And I can choose that.

Nope. I don't get to choose how you see me. Sometimes, even choosing how I see you is beyond me. But...I choose. Not you. And he can choose, and she can choose, and no, this is not a proper subject for anyone to tell anyone else what to do, how to be, how to be seen, or anything else. Because, all of that is just more ego bullshit - with incredibly less justification and a whole lot more pontification. All you need to know about cancer for now is this: You are mortal. You will not last forever. You don't know that, most likely. It's just an idea in your head right now. Glorious tales of heroes and saints, right? Pffft.

All II know to tell you about it is - YOU choose. Not me, not some blogger you will never meet, not a church, not anybody. If there is one single thing only you may choose, how you deal with your own mortality is it. do what you can now, live all you can now, and then, when it becomes real? You choose.


#14

The internet will also tell you that GMOs are the cause of pretty much everything wrong with you, including cancer, dandruff, and athlete's foot.


#15

I was diagnosed with leukemia around age 25. I made it through but one of my pet peeves was peple constantly telling me to be positive and visualize destroying the cancer and how heroic I was.

One of the reasons I disliked it all was the insinuation that if I just tried hard enough I'd beat it, but if I died maybe it was because I didn't have the right attitude or was too weak.

It's a complex set of feels. The doctor brings up valid points of how a certain subset of people approach their cancer and being told the 'proper' was to handle it. I certainly don't begrudge my parents their encouragement. It just wasn't helpful to me (What was helpful for me? Distractions. Games, movies, anything to get me out of myself for a little while)


#16

I and a friend agreed we would like to break off the thumbs of the next hapless fool who gives us a 'thumbs up'. She died. I'm still here. They still do it.


#17

It's always difficult to understand what someone else is going through, or at least it should be. Whatever your view of Lisa Adams' blogging it's really best to go into any discussion knowing that there are many layers to any issue but some may be more important than others. So for me the real question isn't whether the Keller's have a right to say anything, which they do, the real question is: Did they contribute to the discussion about Lisa Adams' well-being? I would have to say no. She has three children and has a mighty incentive to fight as long and as hard as she can and I find the Keller's attitude to be dismissive and elitist, more about keeping a stiff upper lip than anything else. I say: Do not go gentle into that good night...Rage, rage against the dying of the light, Lisa Adams.
http://www.poets.org/viewmedia.php/prmMID/15377


#18

The Kellers certainly have every right to have their opinions about death and dying and living with illness.

However, if you're going to pretend to be a journalist and publish in the Guardian and NY Times - how about we start with getting basic facts right. Like how many kids she has. That really hacks me off about the Keller NY Times piece. He gets so much basic shit wrong.

The Guardian has yanked Emma's piece for not adhering to their own journalism ethics, which I find grimly humorous.


#20

what I saw was different. He talking about quality of life, and mentioned that you have the right not to accept any extreme measures to keep you alive. But maybe he should have been more explicit. If you are done and suffering, he cannot help you out of here. He would be imprisoned, even if the level of suffering was worse than what would send a soldier to a war crimes trial. In fact, he is legally able to treat with stuff that could induce that level of suffering, without any criminal penalty. And that is something I have to think about, so maybe I caught it because of that? I know only Oregon as an exception to those laws.

Maybe, when he said 'quality of life', your mind goes to active pursuits and ordinary stuff. I grieve many of those losses, but that is not where my thoughts immediately go. Mine goes to how very bad and long the ending itself can be. So, i saw what he said as advocating for greater kindness and humanity. Does that look different than 'elitist' to you?


#21

Apparently other people sharing about their cancer diagnosis and treatment is just tacky. As opposed to the bravery of boasting on-line about one's own diagnosis and treatment:
http://emmagkeller.com/blog/2012/06/my-40-day-breast-cancer-a-handful-of-atypical-cells-one-week-a-double-mastectomy-and-reconstructive-surgery-the-next-its-a-cure-but-its-brutal/