So I am in the Twittersphere dog house and, it seems, justifiably so. Itâ€™s hard to respond in 140 chars (especially hundreds of times) so whether I dig myself in further here or adequately respond, at least I have a little space. Here goes.
I was wrong, stupid and insensitive to not read Lisa Bonchek Adams herself before promoting Bill Kellerâ€™s editorial. The internet is often a reactive place, and although I try to resist that impulse, to think before I tweet, I messed up. I hit the send button without doing the research I should have based on something in his piece that did resonate quite strongly with me â€”the idea that the American medical establishment prioritizes quantity over quality of life in end-of-life care. I didn't much think about the personal example being used to make that point, just assumed he was right (and you know what happens when you assume....).
Here was my thinking:
I am hyper-sensitive to the idea that cancer patients who donâ€™t â€œdo everythingâ€ are lesser than others. I have a dear friend who opted to stop treatment for metastatic disease. She faced pressure by her doctors. She faced pressure by her family (and yes, she had small children --she was in her 30s). People accused her of â€œgiving up.â€ She was not seen as brave or heroic or self-determining. Years later I bumped into a mutual friend who still referred to Â this woman as someone who â€œgave up the fight.â€ That rankled. So when I read a journalist saying we needed to think about our attitude regarding end-of-life care and "heroic measures," it landed deeply with me.
Even not end-of-life care. I am supposed to be in treatment for my own disease for four more years. Or maybe 9 more years, if my doctors have their way. I will have to make a decision about that at some point. It makes my stomach sink to think about nine more years of crappy side effects. But when do you say when? How do I weigh survival benefit versus lifestyle benefit? I struggle mightily with this. I suspect that if I choose to say no to the treatment it will be a stigmatizing choice, explicable only to a few of those close to me. If I were later to be diagnosed with metastatic disease, would I be blamed? Would I blame myself?
Meanwhile, I am still feeling the sting of what Gayle Sulik called â€œheartfelt misinformationâ€ spread by Amy Robach in the wake of her cancer diagnosis. I wish her well, of course I do. I mean obviously. Unfortunatelyâ€”and I know this from personal experience, too--when you put yourself in the public eye as a cancer patient you no longer get a free pass. Gayle Sulik wrote beautifully about this: So I was, I guess, feeling easily triggered by anyone's personal story that smacked of that.
Yet Lisa Adams' does not. And none of the above is an excuse for not doing my own research to find out. she was not a good choice for a discussion of end-of-life care. Â I apologize to her for thoughtlessly piling on. Again, I refer Â to Gayle Sulik, who Â wrote her own piece about the Keller-Adams controversy that says it all.Â Â
Some have accused me of backing â€œteam NY Timesâ€ in this debate because of my relationship there. Let me give you a little inside baseball: while we Â have the amazing gift of prominence and audience for our work, we Magazine writers do not have much by way of internal status. We operate in a netherworld, our inclusion on â€œthe teamâ€ situational, depending on whether we reflect well or poorly on the corporation. Nor do I know Bill Keller personally, at least I donâ€™t recall ever meeting him (so please don't tell me that I did in 1988 and just forgot). I do, however, know Â his wife, Emma Gilbey Keller. We have met in person once, for about 30 seconds, but we are Twitter pals. After my recurrence, she emailed me to tell me sheâ€™d been through the surgery I was facingâ€”the DIEP-flap reconstructionâ€”and offered herself as Â a resource. I knew no one who had gone through this so that was a Godsend. Emma was unstintingly generous with her time, sending me long emails, checking in on me when she didnâ€™t hear from me, letting me know what to expect, guiding me through a deeply frightening and painful (physically and emotionally) process, boosting my morale and offering information. She even sent me a good luck blanket to take into the hospital, because she had so often been cold during the week in intensive care. All, as it turned out, while her father, with whom she was extremely close, was dying and she was recovering from her own cancer surgery. Again, we are essentially strangers--I blurbed a book of hers that I liked years ago, but we don' t know each other. I am so grateful to her and always will be. So if anything colored my willingness to back Bill without question, it was my gratitude and loyalty to Emma. That means I will not add to the discussion and speculation about them in this space.
Again, that is not an excuse. I was wrong not to do my due diligence. And I apologize, again, to Lisa Adams, her followers as well as my own followers and readers for that. One of the unsettling parts of the internet is that you canâ€™t take things back. I would have done this differently. Itâ€™s a lesson learned.