Monday, January 13, 2014


Many of you who follow me also follow Lisa Bonchek Adams.  She, like me, has blogged her cancer experience.  She, unlike me, also tweets her day-to-day life.  (In the interests of full disclosure, long ago I somehow linked up my facebook to my twitter account, so it may appear that I'm tweeting but I'm not, I'm posting on facebook.  I am far too wordy to use that medium, and finally, I don't understand the system.)

Lisa and I overlap in Cancer Space.  We both have mets, she to bone (now spread to spinal canal), me to liver. We both have been through the wringer, and we both are writers.  Our styles are a bit different.  She writes in poetry, and I write in childish deathbed humor.  We both are very anti-pink ribbon and anti-awareness.  We both believe in metastatic advocacy.  We both dislike the warrior terminology associated with our disease and have been public about that.

We both have come to look at our outreach online as something more than it started out to be.  I started this blog as a way for far-flung family and friends to keep up with what was going on with me without having to actually talk to anybody.  The truth is that my parents, now gone, were alcoholics, and I didn't want to have slurred conversations about my cancer and drunken opinions about my treatment, at least any more than I had to.  Call me selfish.  It worked, they relied on my blog for information and I only heard a couple times that I shouldn't do reconstruction.

Never in my wildest dreams did I think I'd receive a million and a half hits.  This blog has turned into something much bigger than myself.  Daily, I get emails, messages, and notes from people who have been newly diagnosed or who have had friends or family diagnosed.  They google cancer, find me and they ask me what they should do, what questions to ask, and a variety of things related to cancer.   I'm the Ann Landers of Cancer Etiquette, I guess.  Or maybe Caroline Hax, she's much better.  Anyway,  I spend at least an hour a day answering emails from people who are afraid.   Basically, I try to offer hope.  I have lived for 4 years, they can too - I believe.

Because of the communications I receive, I think that I have a platform that helps people, although I did not intend that when I started. I definitely feel obligated to continue; this is not only about me.

Lisa also believes that about her own social media status.  In fact, it is impossible not to think that way with the kind of responses we get to our writing.  It is the reader who directs the writing, and not the other way around.  Unless, of course, it is the wife who directs the writing, as in Bill Keller's case.  More on that in a sec.

On the darker side, we also know that there are some who are curious about what it's like to live with end-stage cancer. I don't mind that curiosity.  Clearly, Lisa doesn't either.  I would have been curious too had I ever thought about it before my diagnosis. Honestly, who the hell is not curious about what it's like to be dying, or know your time on earth is short?   If you say you aren't, you are perhaps not completely honest with yourself.  The one thing we all have in common is that we are going to die and we don't know what it's like.    Lisa and I both understand that interest.

We also both want the world to know that breast cancer is not pink, clean, pretty and tied up in a ribbon.  It's not about races and runners and ponytails and survivorship.   It is ugly and real and people die.

Some people take photos, like Angelo Marino.  We write.

So, the wife of a former Executive Editor of the New York Times, Emma Keller, discovered Lisa's tweets. Not only discovered them, she became addicted to them, creating a special channel (whatever that is) just to see them.   And then, somehow she felt guilty about her addiction and started wondering if it was healthy to be curious about somebody else's life to that extent.  I suspect Emma has never really involved herself with anybody else's life, so this is all new to her.  And, in her guilt, she didn't blame herself for her curiosity, she blamed Lisa for being so damn interesting.   Naturally with her editorial contacts, she decided relieve her guilt and write for The Guardian -  about this brave woman who puts it all out there to help others, to educate people about metastatic breast cancer. What else can you write about a person you admit to being addicted to, even having contacted, but a glowing piece, right?

Here it is.

Well, maybe not so glowing.   If you notice, the Guardian has deleted the piece as it is not up to their '"editorial standards" whatever that means. (I think it means hundreds of people complained.) I found it in the Internet Archives.  In this piece, if you read between the lines, Emma is basically writing about herself and her thoughts about what Lisa is doing, the "compulsion" Lisa has to write. She also wonders about medical costs.  Mostly, she thinks it is morbid and creepy that Lisa is "Dying Out Loud" and she cannot see the beauty in it or the reason for it.  Because it makes her feel ugly, that means it IS ugly. Instead of deleting her special channel, dusting her hands off and getting back to Neiman's, she decides to cancer shame Lisa. (Cancer shaming: the idea by the healthy that you are Doing Cancer Wrong.)

Edit.  After I published this piece, I discovered that Emma had kept a blog herself, and wrote about her own experience with DCIS.  She was so traumatized that she needed anti-anxiety medication beginning the day of her biopsy.  She writes about a conversation she had with her doctor, “It’s just too much,” I tried to explain, through my tears. “But it’s not cancer,” she aid briskly.  Exactly.' ". 

Perhaps this little anecdote explains much - this woman was so upset about almost having cancer that she became obsessed with somebody who has the worst form - and in her fear, in her knowledge that she would not have handled it the way Lisa has, she lashes out, abusively. 

After the Guardian deleted it, her whipped husband went to bat for her in the New York Times and wrote this scattered article.  I couldn't figure what his point was, except he also was focused on money.  It seemed to be saying he was insulted that Lisa has chosen a different treatment course than his father-in-law did and how doctors find it nearly impossible to find research subjects in oncology which people should do but oh yeah, shame on Lisa for participating in a research trial. Color me confused.

According to the cancer shamers,  everybody who gets cancer is supposed to roll over and just die, whether it's a young woman with 3 children or a 85 year old who has lived their life.  But wouldn't that put a lot of oncologists/radiation oncologists/physicists/chemo nurses, etc out of work?  Wait, these are New York Liberals, let's back up......wouldn't that put people in 3rd world countries who strip the bark of Yew trees for our chemotherapy drugs back into dire poverty?  

If you want to advance the cause of cancer research and convince people to participate in a medical trial and then shame them in the New York Times for doing so - is that helping your cause of bringing work to the starving in Northwest Africa?

He clearly doesn't know much about breast cancer.  How long ago was it that I was near death in a hospital room, a mere second away from having my colon yanked to try to save my life?  A year?  Two?   I was one blood pressure number away from a surgery with an 80% failure rate.  I was dying of sepsis, in ICU.  It took months to recover.   Now I am stable, energetic with a good likelihood of seeing my son graduate high school.  Finishing my job in raising him was what I set out when I was diagnosed with mets, and I may get to do that  {knock wood}  Lisa also has that job she wants to finish.  Breast cancer is a roller coaster ride.  There are ups, there are downs.  That's the way it goes.  I don't know what Keller's father-in-law had, how old he was, or why he went on hospice care, but whatever choices he made are different than Lisa's choices and what's wrong with that?  When my 80 year old dad thought he might have cancer and told me, somewhere during my 7th chemo, that he didn't want to have chemo, I did not disagree.  That was his choice, and he'd lived his life.  I have not.

Lisa is an educator and an advocate.  She knows the way it goes.  She has never said she thought she'd live a long life - she knows she won't. Yet Keller says this, "I cannot imagine Lisa Adams reaching a point where resistance gives way to acceptance."  He clearly doesn't know her, has read little about her and is possibly going on his wife's opinion.  Lisa has always been about acceptance.  Lisa has never given any indication that she will not give up when the time comes.  But with breast cancer, you do this medicine - it works for a while then stops.  You do that medicine, same thing.  Eventually, they all stop working or you run out of medication - and you go on hospice care.  That is what she will do and it's what I will do.  We have accepted that.

So, she wants to live a little longer.  Shameful, especially when there are still treatments out there for her doctors are willing to try.  She has three kids, wouldn't a rational person want to get away?

I am living-proof that one can get back to stability - I have no reason to think that she can't as well.  Her doctors seem to think so.

Keller seems to take exception to all of that.  "It seemed to me, and still does, that there is something enviable about going gently."  Sure.  There is also something enviable about continuing treatment and trying to stay around a while longer when you have three little reasons to keep it up.

The final sentence by another is supposed to sum up what his points were.  "Equal praise is due to those who accept an inevitable fate with grace and courage."  The implication is that Lisa has not exhibited grace nor courage.

And yet, she has.  Both Lisa and I know the final outcome of this disease, and it is death.  We know cancer will kill us and we have never said it wouldn't.  If she said she believed in a magic wand, I missed it.  What we both want is a bit more time with our children.  I believe one can accept the inevitable with grace and courage, while still trying to prolong life.  The two are not mutually exclusive.

The hard part of cancer is not living with treatment and the physical realities that result.  The hard part is knowing that the treatment is only temporary and the time you are asking for may be only months.  And, if writing poetry, watching hummingbirds, smiling at your family in the face of that knowledge is not courage, than I don't know what courage is.

Here are other cancer bloggers and their take on this situation.  Please forgive me if you have a feed and see this updating often as I will be adding them as I find them. If you wrote one, let me know on my facebook feed, I will add it.

Another One with the Cancer
Accidental Amazon
Pink Ribbon Blues
Telling Knots


Don't forget to vote for me in Healthline's Best Blog Contest.  Only 8 more days to go!  And, enter to win your Erin Condren planner by liking her page and coming back to post under that post.


  1. This is perfect. I don't know yours or Lisa's pain and trials, but this is said just perfectly. Shame on them for projecting their guilt/shame/whatever on someone who clearly has found a way to maintain sanity during a trying time.

  2. Very well said, Ann. ~ Kate, of Kate Has Cancer

  3. WOW !! that kind of people make me feel so mad grrrr. Everything you said Ann is so right !! I am one of those who write to you sometimes to ask your advice about my situation and i really need someone like you to be there.
    The other day, i was siting in the waiting room at the hospital in oncology departement and on the wall i saw a paper with a big black title : AFTER CANCER...and i was mad that there is nothing for those people who ''the after cancer'' will never apply !! i am 35 years old with two kids and my youngest one is 8 years old, i am alone with them and when i'm going to die they will be alone !!! So excuse me people who don't understand that but i WILL FIGHT !!!!

  4. I stand by Lisa too. And you, Ann. Wonderful post. Thanks for writing it.

  5. I stand by all who are living with mets. Just had to add that. Thanks again.

  6. Delurking to say that this story takes on a whole other dimension when you learn about Emma Keller's DCIS/DIEP experience (yes, she had Stage 0 last year):
    I think there's a connection to be made between her obsession with Lisa Bonchek Adams' tweets and the posts you write about women who have completed treatment needing to move on (says someone who argueably could fit that description).
    So glad you're doing so well, Ann

  7. P.S. Sorry I couldn't make the link work but it's easy enough to goggle, I used "emma keller 40 days of cancer" and got "What's going on in my house and outside" Click on that and you're on your way.

    Now, back to lurking...

  8. I'm glad I got to read the original piece by ms. keller. That was really nasty. It had this very mocking tone.

  9. Ann
    I.LOVE.YOU. The only person who could really write a proper response to all of this is someone who already earned those stripes. You've earned yours, and then some. THANK you a million times for writing this.

    And did I say, I Love You???


  10. OMGOSH!!! I have to comment before I finish your post so I do not explode, or implode! Emma Keller is an ass, as is her husband, and I am not a cussing, swearing woman. Mr. Keller actually said " there is something enviable about going gently." There is nothing gentle about dying from cancer. People do not die when they choose! They have to wait on the disease to take them, whether they continue on treatments or accept Hospice and palliative care. I watched my Sweet Man die from lung/bone/brain cancer, and it was the biggest work any human being has ever done. BIG BIG work dying from cancer. Gentle? It was the hardest thing I have ever done in my life, to watch him. What ignorant, stupid people. Sorry for my rant. Actually, not sorry; I just wish I could direct it at them. You, I love.

  11. I too stand with Lisa. Great post. You do help a lot of women. You answer questions that go unasked and you do it with pizzazz.

  12. Good grief just finished reading her husband's publication and I am so disgusted and angry at stupid people. "brush with cancer" for his wife??? NO. The thing is, for my husband, and I am sure it is the same for you and Lisa, is that you are not trying to stay longer for yourself; you are trying to stay longer to get your loved ones to a better place. It is the most selfless thing I have ever witnessed.

    Lifting you in prayer, never ceasing. Sending all my love on the wings of a desert sparrow,

  13. As someone living with metastatic breast cancer, I liked your post. Have you sent it to Bill Keller? I am quite disappointed with his editorial, and I subscribe to the NY Times.

  14. Thank you Ann for writing this. As a mets sister that isn't much of a writer, you and Lisa write what I can't. I have learned so much from both of you! Xoxo

  15. Excellent post, Ann.
    I don't think tweeting or blogging is for me, but people like you and Lisa put the realities of breast cancer out there for everyone. You burst their pretty pink bubble and let everyone know what it is really like.

    I read both the articles and then I found Mrs. Keller's "40 Days of Cancer" and read it. What she went through was not easy (I think I would have been seeking a second opinion if a BMX was recommended for DISC, but I don't have all the facts either), but after reading all three articles, I almost think she feels she has been one-upped by someone with more serious cancer.

    40 days? Wish mine had been that. More like a year and a half to get to remission, and still getting treatment even now. Reconstruction? That is still ahead of me! And I know that for now, I am one of the lucky ones because I am currently NED. But considering I metastasized immediately after they said I was cancer free the first time.......

    I so understand the desire to stay alive that Lisa has, even if the Kellers can't. She has three kids she wants to see grow up. And the desire that has kept you going, wanting to see your son graduate. I am thankful my cancer came late enough that my kids were grown (last was in college), but I sure want to be around long enough for my grandbaby to remember me. I would like to see my other two kids marry. Heck, I guess I'm selfish, I would love to see more grandbabies, too.

    Thank you for your blogs. And thank you for sticking up for Lisa. Thank you for speaking for all of us.
    Elizabeth J.

  16. Dear Ann, you said it beautifully and in a much nicer way than I would have in the same situation. I just want you to know that I vote for your blog every day. I know the reality of your situation, but I still pray for you every day. You are so strong and such an inspiration. Thank you for what you did for Lisa and for the way you help others. God bless!!

  17. What insanity. You guys are everything graceful and grace-filled!! Bah humbug to this couple!

  18. your writing is getting better and better.

  19. Wow. That is all I can say. No, wait, I have another word. Twits. My mom had a saying for people like the Kellers. "They open their mouths and stupid comes out." Ann and Lisa, I back you 1,000%. Don't waste another precious moment on the Kellers. I sure won't be. Please continue giving a voice to metastatic cancer. You are treasured more than you can possibly know.

  20. This is a really, really good post on the idiocy of the uninformed. Possibly well intentioned, but stomping all over everything like a toddler. Very well said Ann...

  21. This comment has been removed by the author.

    1. I had deleted this because I originally stated that the Guardian had deleted the article which you, Ann, had already said. Duh. Indeed, the Kellers appear smug and narcissistic devoid of empathy for others. Their agenda is only to share their story with little regard for others. I did not realize that in the cancer world there is a competition where someone diagnosed with stage zero would display such agression towards someone with terminal cancer. How sad for their souls. Lisa and your writings display authenticity and genuiness. Something that the Kellers lack.

  22. Those articles weren't as bad as I thought they would be, but I dislike their style, not because I disagree with, because of the arrogance that simmers beneath. I also dislike Twitter, but I would have thought Tweets about Lisa's life are at least less fatuous than 99% of what is written.

    I have the biggest problem with this - in the 40 Days of Cancer piece EK writes: 'DCIS as it’s known, is the fastest growing form of breast cancer today, thanks to new developments in mammography'.
    Didn't she proofread? Does she not see that she has implied that increases in rates of DCIS are caused by new developments in mammography?! And this woman is a journalist!
    And her husbands waffle about the gentle death of the father in law. I am sure that when we are diagnosed in our 60s or 70s it is a very different experience to our 20s , 30s or even 40s. The word gentle clearly shows a lack of understanding as to what terminal cancer does to you - the pain is the first thing that springs to mind.

  23. Thank you, Ann. You said this very well and I appreciate that you stuck up for Lisa, who in no way deserved this kind of condescension and judgment!

  24. I stand by Lisa as well...and by all people who have decisions to make and do the best they can. How ignorant for someone to say that she made the wrong decision when she chooses to do all she can to stay alive and be a Mom and a wife to her children and to her husband. I'm surprised your column hasn't gone viral. It should.

  25. WTF did I just read by these buffoons?

  26. Thank you for posting a link to what I wrote about this event; I am honored that you found it worth sharing along with others.
    The Kellers may have taken aim at Adams, but failed to grasp that there is a legion of us who agree with her--who dislike Pink and the battle metaphors (Mr. Keller's complete lack of research and absolutely wrong assessment of Adams still stings me--how could anyone get something so simple so wrong?). Perhaps now that those of us--and maybe we are many more than I thought--who refuse Pink and warrior language have created this backlash, real understanding of cancer issues can begin. -- Cancer Curmudgeon aka (sorry, Blogspot won't let me sign in with my Wordpress account, so I have to post as anon).

  27. You live your life and suddenly you find out that it is going to be taken away from you much earlier than expect.In this time of dealing with the Beast (my name for cancer) you have reached out and touched so many people all over the world. Helping so many , bringing comfort and encouragement to all who read your words. Pretty big accomplishment for anyone at any age. The Kellers (am not putting up the snide thoughts) seem to be coming from another world.Okay- you are older and decide you are just going to deal with the disease and fade away with the least amount of discomfort to those around you. That seems to have been the FIL's choice. The story about the scattered cells, only option of total removal of the breasts and reconstruction - hmmmm. And now problems with reconstruction - hmmmm. Kind of reminding me of the recent articles MacDonalds (or Walmart? or other?) put up about how to tip your servers. Kind of being detached from what most of us call reality. I wish you many good days in your life, many more chances to make memories for your children and my respect.

  28. I think that what I dislike about both of the Kelly's articles is that they both stood in judgement of a woman who struggles with a chronic illness. Lisa is living a difficult reality, one that is shared by a lot of women. She deals with it as best she can. To have her choices ridiculed by a couple of outsiders is simply wrong. We all have a right to make our own choices, to handle things in the way that feels most genuine to ourselves. Especially when we are face to face with our own mortality. The Kellys may have chose to do it differently if they were dealing with it, but they aren't, so they should shut up.

  29. As always, incredibly written, except for one thing. You did not go far enough. Evil is the word for these despicable people. Actually, I am not going far enough...UBER EVIL.

  30. Delurking again with another link. In this Guardian column we learn that before they wrote about Lisa, the Kellers offered her a place to stay in NYC while she was undergoing treatment -- weird, isn't it? They're beginning to sound like stalkers to me. Lisa, ever full of good sense, declined.

  31. I have written a synthesis of the main themes and summarized the blog commentary in my latest post

  32. Thank you for writing about this!

    Just because you have dealt with a cancer diagnosis does not mean you understand all other cancer patients. Cancer is not a 'club' that you gain access to. Although we as patients are given endless handouts, contacts, prescriptions, directions etc - cancer is not a society with rules, it is a diagnosis with consequences. You can not assume other patients feel the way you do, you can not tell them what to do, you can only listen to their story, and perhaps share your experiences.

    I am so thankful and grateful for people like you and Lisa who so eloquently are able to share with all of us, with such courage and insight. You bring to light matters of such importance. I learn something every time you write. You are invaluable.

    As far as the Kellers go, they are sadly not alone in their fear and ignorance. But when they put their foot in their mouth in the very public forum that they, in their own hyped up sense of righteousness and importance, chose - their true selves stand exposed as scared, uninformed, selfish, shallow, and just plain dumb. They are idiots, plain and simple. As always, though, the debate that has followed is a good one. Perhaps it will open more peoples' eyes to the fact that Cancer is nothing like 'pink'.


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