#IStandWithLisa

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.


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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
Jake


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