Tag Archives: cancer blog

Blogging in a post Keller World

24 Jan

So, I am going to call this era – Post Kellerian. Why not, I can do whatever I want, this is MY blog (sorry Mrs. and Mr. Keller) 🙂

It is fascinating to me how much fascination has come of this whole Keller thing – not the least of which is/was the Keller’s joint fascination with Lisa Boncheck Adams – a woman for whom I have so much admiration I could not possibly find words to adequately describe. But, one would need only to read through her blog to understand why so many of us share a deep respect and admiration for Lisa.

She has chosen to write about her experiences as a metastatic breast cancer patient. Sometimes her writing causes me to shed tears because it is so real and so poignant. The window she has provided into her life through her writings has changed mine deeply. She writes about many things, about pain and loss and about life, her life. Whatever her topic, always, her writing – to me – is beautiful. The fact that the Keller’s were bothered by her tweeting and blogging is so strange to me – especially coming from a former New York Times editor. I would think that a journalist would understand (and appreciate) more fully the fact that Lisa chose to write about her experiences and share these experiences online.

We are all entitled to our own opinions. But, something about the Keller’s focus on Lisa seems, well, just really strange and pointless. I had the opportunity to read both Bill Keller’s Op Ed and his wife’s piece (prior to her piece being removed “pending investigation”). My take on all of it is that they were both a bit emotional and reacting without really reading or perhaps even understanding who or what they were writing about. For example, Bill Keller repeatedly referred to Lisa in the context of being a “cancer warrior” – which is language that Lisa (if you actually read her writings would know) does not embrace at all.

So much has been written about  all of this – and by writers who are far more eloquent than I – so I don’t think I have much to add. But, I do feel that something has changed now after the Keller’s wrote about (and in my opinion, attacked) Lisa Boncheck Adams for simply writing about her OWN experiences and choosing to share these experiences online. I personally have benefited greatly and have been enriched by reading Lisa’s blog. No one forces me to follow her or to read her posts. It is my choice to read what I want and when I want. So that – the fact that the Keller’s are offended by something that they don’t have to even face, read, watch, hear about or “follow” – is what I find most ridiculous about all of this.

So, now I am writing again in my own blog and thinking a bit before I decide to write about my most recent experience with breast reconstructive surgery. How much am I now comfortable sharing in this Post Kellerian era? I really am giving that some serious thought now. (Not that Bill or Emma know who I am or care, but it does make me pause just a bit). Bill Keller’s piece was an “op-ed” piece – so it is his opinion. But, if you read his wife’s previous piece in The Guardian – you might see Bill’s op-ed as less op-eddy and more a defense of his wife. Strange uses of publications like the NYT and The Guardian – if you ask me.

I am proud of my blog. Not that it has changed anyone’s life particularly, but it has changed mine. I write mostly for myself. What began simply as a way to keep family and friends around the country informed on my treatment (and thus spare myself and my family the need for time consuming phone calls to say the same thing over and over again – during a time when I needed to reserve as much energy to treatment and healing as possible) turned into something else. It turned into many things actually.

One wonderful and unexpected thing my blog became was a way to connect with others around the world who are either going through, have gone through, or have family members who have had (or are going through) breast cancer. It catapulted me out of my living room and into a shared universe that is #BCSM (breast cancer social media) on twitter and it connected me not only online, but in person, with so many amazing and wonderful people. I was invited to a blogging summit and have been offered speaking opportunities, including a spot on a radio show. None of this was something I looked for or sought. But, I am most grateful for the real, human connections that this blog has enabled and even carved out. I am so grateful for the friendships that I have made. If I had not blogged or tweeted, I would never have made these friendships. Social media before my cancer diagnosis was something I knew very little of and even thought was kind of silly – why would anyone want to “tweet” I thought?

But, I am so glad that I found this space and joined it and I am so grateful for all that I have learned and continue to learn from so many amazing bloggers (and yes, tweeters).


At the risk of causing distress or shock to either of the Keller’s, this is a photo of my IV line right before my recon surgery last week (took the anesthesiologist four attempts to get a vein and place this IV) and he beat me up a bit in the process (I mean that literally – he slapped my arm and wrist and hand repeatedly to get a vein to show up – lazy bastard – heat compress works without inflicting pain) OOPS!!!! Am I not supposed to talk about this post Keller? Sorry, I know, only pretty photos, pink ribbons and happy talk #fucancer and you know what? #fubillandemma #lookaway

Love and peace,


Brinker Stinker: A Reminder of What Susan G. Komen is Not About . . .

5 May
Nancy Brinker

This is Nancy Brinker, clapping her hands, maybe she is applauding herself for a job well done (sic). Well I am one person who is not clapping my hands for you Nancy. (Photo credit: Wikipedia)

This blogging thing can sometimes feel like a burden. It seems that I never know how to begin or finish a post anymore. I want to write, probably need to write, and most definitely I feel a responsibility to write. Especially when it has been the kind of week this past week has been in the breast cancer community.

In the past week, two of my friends have had cancer return and a third friend, who has been living with metastatic breast cancer for some time, is now dealing with very severe health problems due to her treatment (to put it mildly, she is in a great deal of pain). This is part of the world of breast cancer. It is not the pink bowed version of things that the Susan G. Komen Foundation sells (mammograms and early detection equal a cure, etc.). Well, clearly mammograms and early detection do not equate to a cure.

And now, this just out: Nancy Brinker reportedly gave herself a 64% raise last year (see the Dallas News article here). She also claimed she was going to step down as CEO last year (amidst public outcry to do so).  And yet she has not stepped down – she is still listed as the CEO of SGK and – apparently right around the time she was reportedly going to step down as CEO – she instead gave herself a 64% raise – way to keep up with inflation, Nancy.

According to the Dallas Morning News: “The nonprofit’s latest 990 IRS filing shows that Brinker, founder and CEO, made $684,717 in fiscal 2012, a 64 percent jump from her $417,000 salary from April 2010 to March 2011.”

I wrote a letter in 2011 (that I also posted on my blog) asking the Susan G. Komen Foundation to leave me alone (I was tired of being hit up for money and tired of being misled). I think given the recent news of Nancy’s 64% raise that this earlier post is relevant. Here it is again: SGK: Please Leave Me Alone

I should note that since that post, Susan G. Komen’s “marketing” department contacted me via email on multiple occasions – apparently my blog post version of my letter to them got some traffic and so they felt the need to respond (even though my attempts to reach them over 100 times – yes, really…I called over 100 times – were ignored).

They never responded to my letter until the blog version of it started getting some traction and traffic (retweets and comments on a blog can get some attention and apparently it got SGK’s marketing department’s attention). While they finally responded, their response was not to deal with any of the real issues I raised, but instead to dissuade me from writing anything negative about them. In fact, the person who contacted me from Susan G. Komen told me that it was “her job to be ‘in the know’ about what was being said about Komen” . . . wow. She went on to tell me that it was essentially her job to deal with people like me.

It all seemed incredibly disingenuous to me. And, even a bit creepy. I felt a little like I was being stalked. And, truth be told (and I am ashamed to admit this) it did dissuade me from speaking out against SGK. I felt intimidated. I felt harassed. And, I just didn’t want to deal with any more direct contact from them. (Keep in mind, they sought me out and emailed me at my personal email associated with this blog – not an email I have ever given to them).

I have attended SGK’s race for the cure. The event is something that many breast cancer survivor’s enjoy. I can appreciate that. There is a “Survivor Ceremony” and many survivors, I am sure receive something positive from the event. My problem with it is that it feels like a huge fraud. I don’t just mean the fact that the money SGK brings in each year – all in the name of a “race for a cure” – is mostly spent on things other than researching a cure (in 2010 Komen put less than 19% of the 389 million dollars it raised in the name of a cure towards actual research) . . . it is also the phoniness of it all – the tunnel vision and the false portrayal that everything is fine, that we are doing enough about breast cancer, that women are surviving because of us (Komen) and aren’t we (Komen) great.

The fraud that I witnessed (in addition to what I outlined in my letter back in 2011) was the parading around of women who have had breast cancer and now speak as though it was some little blip in their lives – that now everything is perfect and all the while Komen seemingly takes credit for these survivor stories. It feels like a cover up. It stinks, no wreaks, of false promise and false hope. And, worse, it makes people complacent because they are lead to believe that Komen is really fighting for a cure when clearly the numbers do not add up to that.

It feels like Komen uses these women to further their spin that early detection will save lives; that mammograms will save lives. The truth is that some people get cancer and some people don’t. The truth is that some people get it and get better and some people don’t. The truth is that early detection or not, no one knows why some people’s cancer’s recur. Early detection is not a cure. But, Komen sells the idea that it is a cure – and all this really tells me (along with their failure to put even 20 percent of the millions they raise towards research) is that they have given up on searching for a cure . . . and certainly there is no “race for a cure” . . . not that I can see.

I really want to believe that Brinker started the Susan G. Komen Foundation with the real goal of ending breast cancer. But, the constant spin about early detection being essentially a cure is not only misleading, it means that SGK is content with the status quo. They are satisfied with things as they are . . . despite Nancy’s claims that she is not . . . actions speak far louder than words.

The reality is that if SGK wasn’t absolutely okay with things the way they are (okay with my friends dying, okay with not understanding why some women who are diagnosed with breast cancer survive and never have a recurrence while others – also diagnosed early – at some later point end up with metastatic breast cancer), then they would put real money towards research; they would actually race for a cure and they would fund research for the most underfunded area of breast cancer: metastatic breast cancer – the kind that kills.

I am tired of seeing my friends suffer, tired of losing friends to this disease, fearful of losing more friends to this disease . . . and I am also tired of being fearful of a recurrence. This is the side of breast cancer that Komen not only seems to ignore, but they seem to simply sweep right under the rug.

This little rant of mine is for Rachel Morro who died of metastatic breast cancer and for my friends currently dealing with metastatic breast cancer. Something has to be done. Just think, if even half of the the money that had been given to SGK in 2010 had been put towards research (instead of Rachel Morro of Cancer Culture Chronicles calculation of only 19% or Reuters calculation of only 14%) then nearly 200 million dollars could have gone to breast cancer research in just one year alone. Now that could really be something.

Komen raises millions of dollars each year in the name of a cure. In doing so, they are essentially siphoning funds away from breast cancer research. How can I say this? Well, apparently at least 80% of the nearly 400 million dollars Komen raised in 2010 went to something other than research. I highly doubt that donors expected 80 cents of every dollar they donated to go to something other than research for a cure. So, if that money had not gone to Komen, then it could have gone directly to actual research – it could have gone directly to what those making donations likely expected it to go to – to research for a cure. Research is what will lead to a cure – not mammograms, not awareness, not pink porta-potties and pink golf carts, not pink anything.

I am not against pink. I am just against the double talk and deception. You simply can not claim to be racing for a cure if you are spending less than 20% of the millions of dollars you take in – in the name of “ending breast cancer forever” – on research.

I expect to hear from SGK’s marketing department very soon . . .