Tag Archives: metastatic breast cancer

Bill Keller’s Cowardly Measures

14 Jan

First of all, I am still speechless after reading Bill Keller’s NYT op-ed. There are so many things with which to take issue I don’t know where to begin. There is the fact that he (and his wife) decided to attack personally a woman for whom so many of us have intense and great admiration for – Lisa Boncheck Adams. And there are all of the completely ignorant statements that he makes about cancer, about being a patient, about so much. I only know what I know about cancer from my own personal experience and that of my friends and family who have had to endure the disease. And, I have experienced the loss of those who have not outlived cancer. I won’t say not survived it, and I won’t say they “lost their battle” . . . I hate that language in the cancer world. But, to each their own.

So, while I do not know where to begin, or how I could possibly ever address every point of Bill Keller’s op-ed that I find to be abhorrent, mind-blowingly ignorant, simply incorrect, wrong, factually not supported ANYWHERE, arrogant mischaracterizations of woman who has been incredibly transparent (so why can’t you – BILL – even read her blog correctly – clearly you haven’t – your words make that obvious), mind boggling, blood boiling – I will say this, because I HAVE to say something:

Bill apparently thinks we are all supposed to die in accordance with Bill’s approved, go quietly into the night, disappear, don’t educate, don’t have feelings, don’t be yourself, don’t do what is important to you, plan. Whatever Bill. I love the internet because when someone is as undeniably stupid as Bill Keller (and his wife – they SO deserve each other), it becomes a storm. And he thought the weather on the East Coast was bad…

I am so proud of my online friends who have taken him on. I know they share my anger and disbelief at what the Keller’s have done. But, they are able to do something I can’t right now – and that is to WRITE and write ELOQUENTLY and THOUGHTFULLY and PROFOUNDLY about all of what is wrong with what the Keller’s have done. I am still at the childish, angry, name calling stage . . . perhaps next week . . . after I recover from tomorrow’s fifth cancer related surgery (don’t worry – this one is for reconstruction purposes – hoping for good results, but just grateful that this will most likely be the last surgery in the series).

Much love and peace (and yes, disgust),

Lisa

P.S. I appreciate any prayers, positive vibes you can send my way – hoping for a good surgery, good result and quick recovery – got lots to do!

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I still love the fall . . . but

1 Oct

Fall has always been my favorite time of the year. I live in Surf City, USA, walking distance from the beach. I love it here. Summers are crowded with vacationing tourists and locals sometimes roll their eyes a little bit over the people that invade our home for those three solid months of summer. But, I actually like the summers too. I like that I live somewhere where people want to come and spend their vacations – it is a great reminder of how lucky I am to live here. And, I even enjoy the crowds – especially knowing that it is a temporary condition. Sometimes I walk down to the beach on a July or August day and it looks like there is one large pep rally going on, a sea of umbrellas, beach blankets, and sunburns. And then there are my family and friends that come to visit (maybe a little bit more often in the summer – to escape the inland heat) and my downstairs tiled entrance is covered in sand, and I like it because it reminds me that my nephew has just visited.

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This is my empty beach 🙂

But, when summer winds down and the crowds leave and fall approaches – that is my favorite time of year. Surf City returns to this little small town. The crowds are gone and it is just “us”, those who live here year round. The locals here know each other, I often walk to a local breakfast place and they know my name (no, it isn’t Cheers and I am not Norm). They know what I am having for breakfast and I am asked if I want my breakfast now, or “do I want to sit for bit” (I like to read the paper). I visit with other regulars. It is nice. And the beach – the empty expanse of the beach in the fall

Pink Ribbon chocolate lollipops for Breast Can...

Pink Ribbon chocolate lollipops for Breast Cancer Awareness Month. Saving lives one processed, sugar containing ribbon at at time? NOT.

– is truly remarkable. I feel like it is a secret because if people only knew that the beach here is empty this time of year – surely they would come. The weather is amazing right now, the sunsets are glorious and I am grateful to have this all right here where I live.

This is my favorite time of year. But, October . . . not so much. I still love it here. And, thankfully the beach does not become riddled with pink ribbons. I am grateful for that. But everywhere else? It is Pinktober.

I most definitely do not like Pinktober. It has always felt like this big scam. And when my Aunt was dying of breast cancer the sea of pink all felt so wrong to me. What had big pink done for her? What had the Susan G. Komen Foundation done for her? They did not help her get better, they did not “race for a cure” for her. They did not race for a cure for me. They did not race for a cure for any of my friends who have metastatic breast cancer and they did not prevent my Aunt or any of my friends from dying.

I have thought a lot about how I was going to deal with Breast Cancer Awareness Month, the pink onslaught.

Would I write scathing articles about Susan G. Komen’s hoarding of all of the breast cancer research funding and how they have – for so many years now – hijacked the lions share of breast cancer research funds and not actually put it towards research? (In 2010 the Susan G. Komen Foundation only put 14% of the 389 million dollars they raised in the name of “racing for a cure” towards research – the rest of it went to, oh I don’t know: maybe salaries – like Nancy Brinker’s $600,000,000 plus a year salary, to pink port potties maybe, to pink golf carts, maybe . . . who knows . . . but it didn’t go towards research).

Would I skip shopping for the next month (as I did for the most part last October) to simply avoid being bombarded by the pink? Would I refrain from speaking up in a grocery store line, and telling people how I really feel about SGK and pink-washing, when I am asked if I will “donate money to breast cancer”?

Every time I was in the check out line of my local grocery store last year, I was asked “if I wanted to donate money to breast cancer” . . . I don’t even know what that means – donate to breast cancer. I sometimes wanted to respond with: “No thanks, I donated my breasts, some lymph nodes, and peace of mind to breast cancer . . . I think that is quite enough for now.”

It is all this big giant shell game really. “Here, let me take your money for buying that pink ribboned, processed, cancer-causing, hormone-disrupting “food” product and we will put some of that money towards . . . something and you will feel like you have done something good today”.

I’m not saying that money does not go to research. I am saying that not enough money goes to research. And, I am saying that I think we have enough awareness – at least of breast cancer – that it exists.

But, some are unaware that after all of these decades of pink, decades of “races for the cure”, decades of “awareness”, and decades of Pinktobers, mortality rates for breast cancer are basically the same, unchanged. So where’s this race they keep talking about? I think it has been pretty much a run around in circles. And for someone who has attended a few “races for the cure” I can say that there has been little or no attention to metastatic breast cancer at these events. Metastatic breast cancer is the only kind that kills. It is the kind that killed my aunt. It is the kind that has killed my friends. It is the kind that will kill more of my friends and it is the kind that could kill me if the cancer I had were ever to recur.

That is what bothers me. I could stand the pink a whole lot better if I thought it were actually doing something.

I still haven’t figured out what I am going to do this October. I know that I am going to live my life, run my business, play some music, take walks on the beach, participate in the 12 week breast cancer “Step by Step” clinical trial (it is an exercise program for breast cancer survivors and it started yesterday) and I am going to be grateful and I am probably going to agitate a little bit . . . because that is how change happens. And we most definitely need some change.

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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 . . .

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