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Dying online

BY KATHY LATOUR | JANUARY 14, 2014

Kathy LaTour blog image
There has been quite the outcry in the past two days about the choice of breast cancer patient Lisa Adams to tweet and blog her dance with death. I don't say dance lightly because Lisa is a writer, and to read her blog is to see her take the intricate steps required in life's final tango to sidestep the pain of her numerous metastases.

I haven't seen her tweets, but I can imagine that someone with such control of the language is able to say a lot in 140 characters.

Whether blog or tweet, it's her decision to die so publicly that prompted writer and columnist Emma Keller to take her to task in a column on Jan. 8 in the Guardian. Keller, who has also had a run with cancer, which she has also blogged about, is somehow offended that Adams is dying so publicly. When I read Keller's column, I admit that I had a fairly strong reaction to it: So where is it written that there are rules on how to die?

Adams concedes that tweeting helps with the pain because it gets her mind off the pain. And she is unapologetic that she doesn't go on and on about her children in the way that, it seems, Keller wants her to. I think I can see where Adams is coming from. Dying is a singular journey, and right now it's between her and her body to make each day count.

If it had stopped there, it wouldn't have become the firestorm that it did. Personally, I chalk it up to someone who has had breast cancer reading her worst fear – that her cancer might come back and she might end up where Adams is. It's the explanation for calling herself "embarrassed at my voyeurism." And in the next sentence she asks if there shouldn't be boundaries for this kind of experience, and in that I read, "please go and die quietly so I don't have to look at what I might have to endure." Then she asks again, "Why am I so obsessed?"

She is obsessed for the same reason we all are with death. We want to know how to do it. And for women with metastatic breast cancer, all the books from experts still aren't enough to figure out their own final turns if they know it's in their future. What Adams has done is offer women who may be facing the same fate some options, which takes a lot of courage if you ask me.

Keller's husband Bill also had to join the discussion. He jumps in with his own column about the joys of recognizing when it's time and letting go as his father-in-law did.

He waxes prolific on going quietly into the night when your time comes and accepting the inevitable.

Come on, Bill. Who are you to tell someone how to die? And to compare an elderly man at the end of his life with a young mother is just plain crazy. But even then I tell myself to shut up. Because when it is all said and done, unless you have died before your time and left small children when your life's wish is to raise them – well you have no right to say anything. If it upsets you, stop reading.

For me, I will now follow Adams until her death, watching a brave woman who has found a way to stay with us until the very last minute, which many people want to do. And in her blogs and tweets she has left a roadmap for the women who will come after her. If you don't believe me, read the comments that follow her blogs.

And one last thing. Shame on the Guardian for taking down Keller's commentary.

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COMMENTS

Thank you, Kathy. Well stated and you speak for many of us. I stand with Lisa Adams and admire her tenacity. She has a spirit and vitality through which she has presented us with one model for anyone who lives with stage IV cancer. I pray for her comfort.
- Posted by Micki 1/14/14 3:17 PM

You write "it's her decision to die so publicly" but you make the same mistake the Kellers make about this issue. Lisa Adams is LIVING with metastatic breast cancer just like I am. Sure it may sometimes feel like we are dying in slow motion, but none of has an expiration date stamped on our foot so we try to continue to live as long and as well as we can. I am lucky that a variety of treatments have kept me alive since my cancer metastasized almost seven years ago. Every treatment is a gamble but we keep rolling the dice because it may buy us some more time. Time that may give science a chance to catch up and discover a new way to prolong our lives. We will likely die of breast cancer, or from treatment complications. But there is no guidebook for those of us in this situation so people like Lisa Adams share their experiences and show us her unique way of navigating a very rough path.

I think you have hit the nail on the head about Emma Keller's reaction. Anyone who has faced any cancer lives in fear of a recurrence and most are happier to keep their heads in the sand so that those fears don't overwhelm them. Lisa Adams makes us face that it doesn't always turn out so well for everyone and shows us the painful uncertainty that those of with metastatic cancer face every day.
- Posted by Susan Maher 1/14/14 4:22 PM

As one of 150,000 US women and men living with metastatic breast cancer, I echo Susan Maher's comments. You've made the same mistake as Keller: We are LIVING with an incurable disease. Adams is not on her deathbed as Keller implies--and her standard-of-care treatment quiver still has a few more arrows.

As the staff of CURE surely knows, participating in clinical trial is not a last-ditch effort!

Lisa Adams is one person living with metastatic breast cancer. While her experiences are certainly instructive they are by no means universal. Perhaps one of the most unnerving aspects of living with this disease are the uncertainties--a drug that works well for Lisa may not work at all for someone with very similar medical history. We just don't know.

Unlike a Lifetime movie, cancer does not unspool in neat orderly increments. What Keller calls "heroic measures" are what 150,000 of us would call "business as usual" in living in with a unpredictable disease.

We can take inspiration from Adams, but she is NOT writing user's manual to dying from--or living with--metastatic breast cancer. To borrow a phrase beloved of car manufacturers, your mileage may vary.

Katherine O'Brien
Board Member
Metastatic Breast Cancer Network
- Posted by Katherine OBrien 1/15/14 9:05 AM

Ok...I had to comment on this one. Mind you, I write this post from a hospital bed, as I have landed with a nasty bout of pneumonia. Which - my fellow stage 4 folks know can be a little scary. Susan - you're right...the stats say we will most likely die from breast cancer. But I will always hold out hope that I'll go another way...hit by a bus, perhaps? :) Because life is unpredictable, and you never know what's going to happen next!
- Posted by carrie corey 1/15/14 5:01 PM

I disagree. The Guardian showed great fortitude and class to take the nasty writing of Emma Keller down. It's still in the archives. Did you even read what she wrote?

https://web.archive.org/web/20140109033020/http://...

The Kellers crossed the line with their critiques of this woman's writings. It was the most pathetic excuse for "journalism" I've seen in some time.
- Posted by Marj 1/15/14 8:55 PM

When any publication gives in to public comment and takes down a piece of writing, it's an afront to free speech. Of course, the Guardian is not a US publication so it doesn't adhere to the same first amendment rights that we have in this country. They took it down, it says on the post, until further investigation. Of what, bad taste. And columns are a form of journalism that is not held to the same standards as others. Columnists are hired for their opnion. We got hers and we are entitled to respond, and I see the response as a very healthy look at attitudes toward dying.
- Posted by Kathy LaTour 1/16/14 8:57 AM

It is my understanding there were many factual errors in the article, and that the reporter exchanged personal emails with Lisa without mentioning plans for using their conversation in an article. Will be interesting to see if the publication reposts the article after a good fact-checking.
- Posted by carrie corey 1/16/14 3:49 PM

The Kellers call to mind Joan Didion's comment that "writers are always selling somebody out." Lisa the real, live person, coming to grips with the unavoidable issues of her actual life, ends up sacrificed to the writers' need for provocative content. It should have been enough to describe and explore a compelling real life story without resorting to such banal provocation.
- Posted by Jay 1/19/14 4:41 PM

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