Monday, January 13, 2014

And I find it kinda funny, I find it kinda sad

The dreams in which I'm dying are the best I've ever had

I find it hard to tell you
I find it hard to take
So, this happened:

LISA BONCHEK ADAMS has spent the last seven years in a fierce and very public cage fight with death. Since a mammogram detected the first toxic seeds of cancer in her left breast when she was 37, she has blogged and tweeted copiously about her contest with the advancing disease. She has tweeted through morphine haze and radiation burn. Even by contemporary standards of social-media self-disclosure, she is a phenomenon. (Last week she tweeted her 165,000th tweet.) A rapt audience of several thousand follows her unsparing narrative of mastectomy, chemotherapy, radiation, biopsies and scans, pumps and drains and catheters, grueling drug trials and grim side effects, along with her posts on how to tell the children, potshots at the breast cancer lobby, poetry and resolute calls to “persevere.”

Which has inflamed lots of people for reasons I don't quite understand.

Bill Keller's point was to contrast the response to cancer of Lisa Adams with the response to cancer of his father-in-law, who lived in Britain:

In October 2012 I wrote about my father-in-law’s death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except pain killers and allowed to slip peacefully from life. His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.

He has a valid point, actually, picking up on that last line about the "expensive misery of death in America:"

Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.
Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor, because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.
Unfortunately, he goes a bit awry both by taking Ms. Adams' response to cancer far too personally.  Does Ms. Adams response to her cancer truly peg his father-in-law as a failure?

And here we hit the interesting question:  whose death is it, anyway?  Or rather, whose life is it?  Yours alone?  Or are you part of a community?  If so, which one, and who sets the rules about what is, and is not, acceptable there?

People are quite inflamed about this, probably in no small part because Emma Keller wrote an op-ed that was published in the Guardian (and then removed) which apparently asked questions like:  "[is there] such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?"  Most of the response to the Kellers is that they are monsters for raising these issues.

And I'm not so sure they are.

We still fear cancer, and we fear death and dying, too.  I used to see ads all the time for a clinic that treated cancer patients and promised to take care of them, to give them every possible treatment (not including, apparently, extracts from peach pits, but everything else), and had purported (I don't know; were they just actors?) cancer patients who'd been told to go home and die who had been cured, or were in remission, or who certainly weren't worried about dying anymore.

And here's where it gets problematic:  I don't want anyone to die from cancer, but none of us gets out of here alive.  When is it too much?

I've known cancer patients to undergo experimental therapies that nearly killed them, because refusing to try everything was simply not to be considered.  To this day I suspect the decision to experiment had more to do with the family's fear of not trying it all, than it did with the patient's desire to live longer.  In that case, it only made life more miserable, when there wasn't that much life left anyway.

On the other hand, of course, YMMV, and who knows the future?  But is it impossible to have this conversation without being called a "monster in human form"?  Just a few years ago tout le monde was talking about Jack Kevorkian and the "right to die."  Now we can't talk about the right not to be heroic about your cancer?

I knew a church member, when I was a student pastor, who died of cancer in his home, with his family.  I was there on his last night, I stayed with the family until the early morning hours, I prayed with them; I prayed with him.  It meant a great deal to me (I cannot speak for the family) to do his funeral only a few days later, in the snows of southern Illinois.  To go home, to accept death, was as heroic as to defy cancer with every weapon in the modern medical arsenal.

I'm not carrying a banner (or even any water) for Bill Keller.  This is a sensitive topic and, try as he might to approach it with sensitivity, I think he went a bit off the rails.  On the other hand, I don't think that, because he wrote this, he's a monster, or unfit for human society.  This is a hard subject.  Some of us accept death like an old friend, in the words of the story of the three brothers from Harry Potter.  Some of us prefer to fight death to the last breath.  I don't think Mr. Keller is arguing that one position is superior to the other; that one choice alone should be allowed in society, the other shunned.  I'm no fan of euthanasia because it can too easily make the ill and infirm feel they have a duty to die and leave the living alone.  I'm also not so sure any of us can imagine our own death, can realize with what finality it comes.  I say, even as an ordained Christian minister, that what comes after death is unknown, and what we too easily imagine is being a guest at our own funeral.  You won't be there, of course.  The funeral is for the living, not for the dead.

But try to imagine your funeral that way.  Your funeral happens without even there to imagine it.  Now, try to really imagine your funeral.

Some of us want to fight illness and death with every weapon available to us, but even then there's a social component.  So many cancers are caused by environmental conditions; yet beyond curbing tobacco use, what do we really do to decrease the rates of cancer in our world?  That cost is too high, it would seem; or perhaps too tenuously connected, so we go for the direct connection of "curing" cancer when it strikes.  That it would be far easier and more effective to prevent cancer, no one really argues.  But once we banned smoking in most public places and restricting advertising of tobacco products, we pretty much gave up on that pursuit.  Now we prefer to leave the treatment of cancer to the free market (cancer clinics and insurance companies) and will power (if you fight hard enough, you might win!).

And there's that social component again:  if we urge you to fight your cancer, and you decline to do so, what does society say about you?  Some cancers respond well to chemotherapy and radiation (our methods of treating cancer really having changed since my childhood.  I know there's a new gene-based treatment that is now conceivable; but then I remember when interferon was going to change the way we treated cancer, once and for all; and there was something before interferon that was going to work the miracle, if I recall correctly.).

I don't begrudge anyone the treatment of their illness in any way they want to (or can afford to), but I have long wondered about the social costs and consequences of supporting the patient the way we "support our troops."  How many of us, after all, still have those magnets on our cars, or ever did more than buy one in the first place?  I don't plan to spit on a cancer patient leaving a hospital any time soon, or to burn my insurance card; but must we all be warriors against death and illness?   I'm all for preventing diseases.  I'd much rather we put our social and economic effort into preventing cancer, than into burning and cutting and poisoning it out.  I suspect even the genetic-based therapies, if they ever come into existence, won't be as pleasant as never having a cancer in the first place.  Would it be wrong of me to promote the brave warriors against the causes of cancer, rather than the warrior-patients in their fight against their cancer?

I have a friend who died recently of cancer.  She fought it all the way, as determinedly as she could.  I'm glad for her, that she did that.  But I wouldn't have blamed her, either, if she's said "Phooey, I'm gonna die anyway, and this chemo is only going to make me miserable!"  She wanted the chance to defeat it, even when there really wasn't one; but, after all, who knows the future?  I would not disagree with her choice; but I never regarded her as an icon, either.  It was pretty clear that, at least at some point, she never had a chance.  She never admitted that but she was never an icon, either.

I don't know that we need any icons.  We certainly don't need to tear them down, either.  These personal stories can be powerful.  They can also be misleading.  I don't want to be in the position of judging another person's life decisions, but we all do that when we approve, or disapprove, of someone else's choices; or even when we don't' wholly agree with them:  just ask Bill and Emma Keller.  I'm not saying (again) he got it right in his op-ed today; but maybe all Bill Keller meant to say, was that we could be, as a society, a bit less militaristic, and a bit more humane.

I think it would be a start, anyway.


Perhaps I'm being too clinical about this.  What I know of cancer patients I mentioned in this post.  But what I find curious is that, by and large, I agree with Keller's assessment of Keller:

“I think some readers have misread my point, and some – the most vociferous – seem to believe that anything short of an unqualified ‘right on, Lisa!’ is inhumane or sacrilegious,” he told Sullivan. “But I’ve heard from readers who understood the point and found it worth grappling with.”
At least to the point of finding this an issue worth grappling with.  The comparison of Keller's 79 year old father in law to a 40 year old cancer patient is a poor choice of rhetorical base for his argument (then again, so is saying Keller has aided and abetted Sarah Palin's "Death panels" argument), and I don't excuse it because, like Edward Snowden, Keller "meant well."  But I don't get why it prompts this kind of language:

There is so much condescending and arrogant in that paragraph [sic], I hardly know where to begin. Keller writes a piece that’s riddled with errors from the very first sentence, and then he blames the backlash on people “misreading” his point. He insists the criticism is because he wrote something that wasn’t “an unqualified ‘right on, Lisa!” And then he nobly acknowledges that at least some readers “understood the point.”
I don’t know how stupid Keller thinks New York Times readers are, but believe me, plenty of us have basic reading comprehension.
And basic reading comprehension means we can all read the same text and draw radically different conclusions from it.  But rather than shoot the (admittedly imperfect) messenger, why don't we consider the complexity of the topic (some face cancer heroically by fighting it, some by accepting it, and the difference is, well..."Change the facts, change the outcome."

I guess, as usual, it's another example of generating a lot of heat, and not much light.


  1. It was a poor choice to make a Guardian column on the woman's posts about her cancer. That's my take on it. No one made anyone read them, after all. Keller's defense of his wife is odd. If she's going to be writing columns, an "opinion journalist" then they've got to expect people are going to have opinion about what she writes. And, with a topic like this one, it's bound to get people angry.

    One of my sisters-in-law died of breast cancer two year ago, leaving two teenage children and her husband and her sister and brother. Her children, my brother and her sister were all in a state of grief I've never witnessed before. Since then I've lost the two people closest to me in the world. I'd never go into detail about it but I'd never comment on someone who did choose to, if they respected the rights of other people to privacy. There's a sort of privacy issue here, maybe, the right of people who choose to read her posts to have their experience not become fodder for outside criticism. There are some things that just aren't appropriate. The Kellers could have raised the issues they chose to without violating the choices other people have made in this matter.

  2. The Kellers could have raised the issues they chose to without violating the choices other people have made in this matter.

    I agree.