Monday, January 13, 2014

Cue the Kellers

Lisa Adams is a stunningly articulate blogger and mother of three from New England who has suddenly found herself as the Rorschsach test for two prominent journalists who should have known better. The husband and wife team, Emma and Bill Keller, writing for the Guardian and The New York Times respectively, in the end tell us more about their own fears and experiences with cancer than they do about Lisa and her current difficult treatment for metastatic breast cancer.  She has currently been hospitalizaled at New York's Memorial Sloan Kettering Cancer Center (MSKCC) for almost two weeks now.

The two pieces of writing are disrespectful, inaccurate, and to return a word grenade lobbed by Emma Keller in her Guardian piece, "unethical."  Somehow both writers managed to conclude that Lisa is dying (metastatic and terminal are not synonyms), a huge assumption that isn't theirs to declare.  Most bloggers I follow, including Lisa Adams, pay more attention to accuracy than these journalists did. Keller, former executive editor of The New York Times, originally misstated the number of children Lisa has. Emma's piece has been removed from the Guardian "pending investigation."

There are many levels on which their "blame the patient" posts are so wrong but I'll stick with two: the gigantic misunderstandings surrounding metastatic breast cancer and a withering lack of savvy about social media and its role in fostering healthy epatient communities.  

Somehow, both writers have found the whole idea of patients writing about their experience, and how @adamslisa in particular does so, strangely offensive. Cue the Kellers with a big welcome sign to the 21st century!  Cue the Kellers: no one is forcing you to read anyone's tweets!  Cue the Kellers: ever since blogging platforms evolved we've heard from men and women about their disease experience and exchanging that knowledge with others. Cue the Kellers:  Peer to Peer Healthcare  published in 2011 by Pew Internet, a project of the Pew Research Foundation. 

For many of us, social media has been the only vehicle in which something approaching truth can be found about living with cancer, and I mean actually living with it, not understanding what cancer is or a definition of chemotherapy. We want hints on helping a phlebotomist find the sweet spot and ten ways of stopping nausea without Zofran. We want to find out more about genomic analysis and in when it's really helpful. No breast cancer patient is going to find these kind of essential details about treatment from the web sites of breast cancer organizations.  We find this info from other patients. The organizations may have been founded with the best intention to end disease but each is ultimately vested in its own survival. Patient communities, on the other hand, and patients within social media, exist to help educate and help each other. Patients share freely.  It is interactive, dynamic, and powerful, not a one-way street like a newspaper.

The understated nastiness of Bill Keller's "Heroic Measures" starts early. He refers to Lisa as  " ... a research subject and proselytizer for the institution" (MSKCC).  The subliminal shift to "research subject" shows where his perspective hovers about cancer. He constantly uses military language and metaphor, which isn't part of Lisa's style book. Bill Keller's perception of cancer is limited, naive and just plain stupid.  Women with metastatic breast cancer or anyone with metastatic cancer period can endure difficult periods of illness and pop back to tell us about it next month. Cancer treatment, even today with many advances, is grueling.  Earlier today I corresponded with a woman who has been in hospice three times. She isn't even 60. Yet Keller's point of view is based on this, "In October 2012 I wrote about my father-in-law's death from cancer in a British hospital. There, more routinely than in the Unites States,* patients are offered the option of being unplugged from everything except pain killer sand allowed to slip peacefully from life." If that's not enough, since Keller has already misread what Lisa has written about the palliative care she's receiving, "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."
       
Wow.  He writes on from there for about two more pages. That basis is where Bill Keller's understanding of Lisa's situation stopped, if he ever had any understanding of her situation to begin with.  He extrapolates the experience of one (elderly? it looks like Keller himself is middle aged) family member with cancer to everyone with cancer and especially to that woman whose tweets annoy him.  It is a failure on an unforgivable scale.
 
Cue the Kellers: next time you want to write about cancer, take a look at your own stories.  Better, yet, just talk between yourselves.

                                                                            #   #   # 

*Thousands of patients in the United States are offered palliative care on a daily basis.  The UK doesn't hold a patent on this.  There is a weekly tweet chat on Twitter every Wednesday evening on hospice and palliative care under the #hpm hashtag at 8 pm CT.

18 comments:

Ask a Breast Cancer Survivor said...

You speak for many of us and do so quite eloquently. Thank you, as always, for clarity and spirit in your response!

Ask a Breast Cancer Survivor said...

Thank you.

afterfiveyears.com said...

Nicely said Jody. I am struggling with why the Kellers can't simply let Lisa do Lisa. Why they decided to pick on her...it seems just wrong on a basic human level.

There is no right way or wrong way for that matter, to do cancer, and get through it.

Lauren

Julie Goodale said...

Jody, thank you for this. I, like so many others, was appalled by the articles - just wrong on so many levels! You've written so clearly, thank you.

beth cioffoletti said...

I, too, am appalled by the Kellers' writings. But at least it is drawing some attention to the real experience of Metastatic Breast Cancer that Lisa Adams articulates so well, and with so much graciousness. She will speak eloquently for us to a much larger audience now, and that is a good thing.

Ann aka ButDoctorIHatePink said...

I wrote about this in my blog too, http://www.butdoctorihate.com. It really could be any of us these people went after.

One thing I found interesting - Emma Keller had DCIS years ago - and BLOGGED about it. She said she was so distraught she had to be on anti-anxiety from the time of her biopsy until she was declared cured, 40 days later. She was in tears, telling her doctor she couldn't take it anymore.

Yet Lisa, and I, live with metastatic cancer. I have had a liver resection, gamma knife, 7 different chemos, sepsis and 6 surgeries and I've not cried about not being able to "take it." In fact, I use my platform as best I can, to help women who are undergoing the same thing I am and help them with their diagnosis - as does Lisa.

How dare that weak-willed woman and her husband attack a strong women like Lisa? It's disgusting.

Many of us have blogged this subject and I am thinking I will do a blog round-up. It is important that people know that we who blog, are not doing anything other than helping other women who are in our situation.

Ann aka ButDoctorIHatePink said...

Oops, typo galore. My blog is butdoctorihatepink.com. And, the link that I discuss it: http://www.butdoctorihatepink.com/2014/01/istandwithlisa.html

I do stand with Lisa. And am angry about this treatment, obviously.

Dr. Michael A. Wosnick said...

Well said Jody, as always.

pinkunderbelly.com said...

I stand with Lisa and will remain standing, with her and everyone else's blogs I read. While lucky enough to have had an incredible support system through my cancer "journey," none of my real-life friends get it like my blog friends.

Facing Cancer Together said...

Perfect, Jody. Thank you for this. ~Catherine

Nancy's Point said...

Hi Jody, Great insights here. Thank you. It's quite baffling to me how both Keller's could be so off the mark on so many things...

There are countless disease-related issues worth discussing and no topic is off limits as far as that goes if it's done correctly, but somehow they both veered way off track and as many have mentioned, they almost came across as bullies. Why they chose to zero in on Lisa and make some kind of example out her, is beyond me. Guess it backfired though!

As far as social media and the cancer patient - they're completely out of the loop.

Thanks for sharing your insights. Loved seeing a post from you, my friend.

Jody said...

Lauren,
My take on the Kellers is that they had a beef about cancer afer their own cancer experience and Lisa happened to get in their way.

If you look at some journalism feature stories, you see the gut of the article in the center and can easily see how the writer looked around for a "human subject" to personify the topic.

This was one of the most offensive things I've seen.

Why they can't let Lisa be Lisa is a question I hope they both are musing about today. Perhaps they learned something?

And thanks so all of you -- I'm thrilled that the realities of metastatic breast cancer are coming clear through the fog. Thousands of women face these difficulties daily, including me.

Ann,
I'm well familiar with you and your blogging:) And was not suprised that she herself had had a scrape with cancer. I live with metastatic cancer, you do, Lisa does. I'm not going to detail what and where I am. All I'm clear with is that the Kellers's experience - Emma's own DCIS and the death of her father - rendered them incapable of seeing cancer in any other light. It isn't about Lisa as much as piss-poor journalism masquerading as op-ed. It is about Lisa in that the Kellers picker her to project their mutual anxiety. Disgusting all the way around.

Thanks to you all for your comments and support.
~jms

Unknown said...

Jody, thank you for including a link to the Pew Research report. I had been considering writing a post and your long-distance encouragement was what tipped me over the edge to do it. In it I try to explain to newcomers and outsiders what exactly is going on with health care and social media -- and why it matters.

The social life of health information

Thank you!

Amy Shainman said...

Thanks Jody. Perhaps the Keller's unfortunate, uneducated journalism will pave the wave for change on how cancer is depicted in future articles by all journalists. Perhaps journalists will now take the time to really research metastatic breast cancer before writing anything. So, in that sense…it has been a good wake up call. When Angelina came forward with her op ed piece last year, I found most journalists were completely uneducated about BRCA gene mutations and the feelings/decisions accompanying cancer risk. It is an obligation of journalists/reporters to get the story right--do the research, interview the experts. I would say this would be even more important when writing about a patient with cancer- which is highly patient specific. When writing about someone with cancer …it also seems an ethical must for journalists to take a step back and ask themselves, is doing this or saying this in any way insensitive to the person I am writing about? It is clear that the Keller's did none of the above. The articles say way more about the Kellers than Lisa Adams.
Amy Byer Shainman
BRCA Health Advocate
The BRCA Responder
http://thebrcaresponder.blogspot.com

Lisa Cain-Masters said...

I for one am grateful for these uneducated, inaccurate and just plain stupid people. How do two people get the opportunity to write for such organizations. On the positive:
Number 1. look at the attention these articles are bringing to the writing of our illnesses. I have metastic breast cancer too and I write a blog on the Huffington Post spilling my guts every time I thing it may help.
Number 2. Writing about ones illness and delivering the messages via socia media is helpful. It has been extremely helpful to me. I think it also will help Twitter's stock price as they are my "go to" for updated information from such places as Sloan Kettering, The Cleveland Clinic, Dr. Susan Love, the Susan G. Komen Foundation and the many Lisa Adams out there.
3. The access to these accounts give me peace and like you said, information of what we are actually living with.
4. Sharing goes far beyond cancer. I get so much information from Autism Speaks. So do other families.
I'm bored with politics. We are a nation divided, have been so for a very long time and all I hear on the news channels are blah blah blah. I would much rather read about Lisa Adams and others going through similar things as myself cheering them on. In ending, thank you to the "Kellers" for their ignorance and unempathetic attitudes. Let's flood Twitter and the blog world with what we live with.
Lisa Masters

Arun Venkatesh said...

Took me time to read all the comments, but I really enjoyed the article. It proved to be Very helpful to me and I am sure to all the commenters here! It’s always nice when you can not only be informed, but also entertained!
Healthcare BPO payer services

Jean Anne said...

Brilliantly written and thanks for doing so. If Bill Keller wanted to write about end of life care, palliative care, hospice care or cancer, all he had to do was focus on his father's own treatment - he need not bash Lisa Adams in the process. Everyone is entitled to their own way of moving through cancer or any disease and the Kellers frankly should just leave patients who blog alone. If patients want to share their experiences, so be it.

Jennifer Clark said...

I read your blog. Jody, You are right. Perfect thoughts. Thanks for sharing your views with us. Keep Sharing.

Sisters

Sisters
Sisters