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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Reflections . . .

27 Dec

This was my third, cancer-free Christmas. Cancer free. That is something.

Every day is something new and amazing really, if I want it to be. And I guess that is the reason I am writing today. There are some things that I have lost to cancer (besides the obvious, which would be my breasts and my peace of mind). One of the losses, which is not necessarily a bad thing, is my patience for all things petty. I don’t know that I ever had tremendous patience for petty things. But, now, post cancer – post the days that were continually hijacked by pain, exhaustion, chemo, radiation and surgeries – I simply have lost my patience for, well . . . stupid, petty things. I have a very hard time with losing time or having wasted time.

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This is where I spent Christmas morning, watching and listening to the ocean and enjoying a beautiful, sunny morning. So grateful for those moments on the beach alone and so grateful to have my family come and join me on Christmas day 🙂

An example would be time spent arguing (especially arguing over something stupid). I marvel at how upset people can become over getting cut off on the freeway, or not having something go their way, or simply having to do something that they were not planning on having to do. My goodness. This past week has been such an eye opener for me.  I am so grateful for so many things, and I guess, I just can’t sweat the small stuff . . . it is amazing to me at what can throw someone’s day off, or make it “miserable” or bad. I know that it is all relative. But, really, if you have your health, you have SO much, so much.

I never thought that I took my life, my friends, my family, music, or a beautiful day for granted prior to cancer. And, I did not need cancer to see or to appreciate the beauty and love of my friends, family or nature. That being said, my wish is for another cancer free year (for all of us) and that we all slow down a bit, take life a little less seriously (which really means taking life seriously I think – as in enjoying life, not getting upset over minor things and recognizing that some things are truly minor).

I have made it a point to take more time out for the things that I enjoy. They do say that you should do what you love. I wonder if I had done more of that if I would have ever been sick. Who knows. I am not one to blame the cancer patient for getting cancer. But, I do know that I could have chosen to have a bit less stress in my life in the years preceding my diagnosis. And, as someone who would like to think that I have even an ounce of control over my health outcome – the idea of stress reduction (and that I can actively do something about that) perhaps helping prevent a recurrence is appealing to me.

So, that is my ramble for today and a bit of a New Year’s resolution too (something that I actually started several months ago) and that is to seek joy, seek love, seek peace.

Wishing you all the same.

Much love and gratitude,

Lisa

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

11 Oct

This seemed worth repeating . . . so here goes . . . rehash of an old post, wish I could say that things have changed. Sadly, things have not changed. I am not against pink, I am simply agains the double talk and deception . . . and the complacency . . .

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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…

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Thank you for visiting cancerland. We hope you enjoyed your stay.

5 Oct

Some Awareness: What I was not aware of until I went through breast cancer myself – how long it would take to recover (and would I ever really recover): the above post was written 20 months after I was diagnosed. I am re-posting it now because it reminds me of how long recovery took and that 20 months out I was still struggling and fighting. I am now 4 1/2 years out. Back then (November of 2010) I marveled at how far I had come and how far I felt I still needed to go . . . sometimes I still do the same to this day. It is a good thing. I am so very, very grateful today.

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I haven’t written in a while. I keep starting a blog post, even get quite a distance into it, but, then I stop, save it as a draft and put my laptop away. When I return to it the next day I am no longer “there” anymore and so I start over, writing about something else. I have nearly posted something on a number of topics in the past couple of weeks. But, I just can’t seem to put myself behind it long enough to get it done.

Lately, I either write because I feel particularly down, displaced by this cancer nonsense, and use writing as a vehicle to somehow transport me back to a better spot or I write because I want to share something really good.

I think the past several weeks I have had so many highs and lows and have so quickly felt tossed back and…

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The Re-Branding of the Susan G. Komen Foundation

1 Oct

It was necessary – given the heat and fallout that SGK has deservedly experienced the past couple of years – that they re-brand themselves. And, they are definitely good at branding. But: “Passionately Pink for the Cure” . . . really? (Oh, and this has been trademarked – so don’t think you can use it for a fundraiser without getting sued).

I just discovered this re-branding this morning when I walked into my office building and saw this:

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The lobby of my office building has gone pink

This wasn’t really a big surprise to me. But, then I saw all of these signs for: pasionatelypink.org and I thought, well who are they? Who is this new breast cancer non-profit? Hmmm . . .

And then I saw this:

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Passionately Pink for the Cure is a new registered trademark of SGK – and their new brand. I guess they have finally conceded that they are not racing for anything.

SGK understandably needed a face lift after: a) doing some very stupid things like: pulling the plug on some women’s healthcare last year (you know, just the women who are poor, by choosing to no longer provide money to Planned Parenthood – where many women, in particular poor women, receive cancer screening),  and after b) being outed by many sources (including Reuters and our dear Rachel in 2010 in her widely seen post on “2010 Komen by the Numbers” – and for those of you who did not know, Rachel, among other things she was a cpa, so she did the math on SGK’s public financials) that less than 15% of the millions and millions of dollars SGK has raised in the name of a cure go towards research. Just to be clear, Rachel’s numbers for 2010 were 19%. When Rachel died of metastatic breast cancer in 2011, her post made the rounds again and Reuters did their own math and came up with 14%. Either way – not much.

In fairness, after tremendous public outcry, SGK returned the money to Planned Parenthood (essentially they were forced into doing the right thing).

And, then of course there was Nancy Brinker’s “Promise Me” Perfume fiasco. In case you didn’t know or don’t remember (but who could forget), Nancy Brinker launched a perfume called Promise Me (which is also the name of her book that was released about the same time). Of course the proceeds of this carcinogen containing perfume (yes, tests were run and the “Promise Me” perfume was found to contain chemicals banned in Europe for being known carcinogens) went towards breast cancer. About how much of it went to breast cancer research? About a $1.64 of the nearly $70.00 purchase price went towards a cure. The perfume was put on the shelves and sold. And, once it was brought to Nancy’s attention that her perfume contained harmful chemicals, she refused to take it off the shelves. 

Many of us began demanding that Nancy Brinker “step down”. She agreed to step down – but after agreeing to – she kinda well, really didn’t step down at first. And in fact, she decided to give herself a raise, upping her already enormous salary to $624,000.00 a year. There was fallout from this too (her giving herself a raise amidst demands she step down).

This past year some of the fallout received by SGK has resulted in some of their “Races for the Cure” events getting cancelled.

So it all makes sense that they would rebrand themselves – and it certainly makes sense that they would drop the “race for the cure” line from their brand because lets face it – this has been no race. Giving less than 20% of nearly 400 million dollars raised in just one year to breast cancer research is not a race. And, metastatic breast cancer – the kind that actually kills – has historically only received about 2%.

No, that is not a race. That is not even a slow walk.

So, I am one of many bloggers out there who have criticized SGK. I would like to think that our voices have been heard. They have certainly responded when we yelled loud enough. And, Nancy even referred to us a few years back as “grumblers”. Well, eventually, little by little some notice is being taken . . . I think. But, I am quite suspicious (given the numbers historically and given the fact that they pretty much seem to only do the right thing when they are forced to: when not doing the right thing puts their whole existence in jeopardy). So, yeah, I am suspicious.

Incidentally, their new domain: http://www.passionatelypink.org redirects right back to them. Nicely done!

I personally have had people from Susan G. Komen’s marketing department contact me to try to convince me that Komen is in fact a good organization – or really, I think they contacted me just to get me to shut up. (If you are interested in reading more about that, see this post: Komen, Please Leave Me Alone).

So, at least SGK is no longer claiming to be “racing for a cure”. Now they are just “passionately pink”. Who doesn’t love that?

Meanwhile, excuse me while I passionately puke . . .

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.

Oh Benign, Won’t You Be Mine . . . Forever . . . Please?

18 Sep

I received good news, such very good news – my biopsy pathology came back clear – as in “benign”, as in: cancer free. Thank you so much for your thoughts and prayers. It has meant so much to me, it is truly what carried me through what was an unexpectedly very trying time in the post cancer, potential-land-mind, landscape.

It has been quite a month, so much has happened (on all fronts: personal, work, music). It has been such an intense time on so many levels. I don’t even know where to begin . . . so perhaps I won’t 🙂

I learned something new last night – a term called “vague booking” which is apparently the posting of Facebook posts that really say nothing at all (are vague) but insinuate something exciting or mysterious or . . . whatever 🙂  So, I guess I am going to “vague-blog” a bit.

Simply (or vaguely) put, the past six weeks or so have been challenging, wonderful, exciting, scary (nothing like spending over three weeks waiting on biopsy results), and did I say exciting? It has been a bit of a whirlwind and mostly in very good ways. The past six weeks have included some of the very best days of my life and sadly some very bad ones too (having friends get diagnosed is hard, so hard).

How is that for vague blogging?

So while I am cancer free, so many friends were diagnosed in just the past month. That has been particularly challenging. On the day I found out my good news: that my biopsy results were clear, a girlfriend of mine learned that her mom has breast cancer. And she is just one of, very sadly, way too many.

While I was waiting for my results, I was talking with newly diagnosed friends and telling them: “You can do it, I got through it and I am healthy now and you will be too”

It was hard to say that these past few weeks – not really knowing if the “I am healthy” part was still true.  I hoped and prayed it would be true.  I am so grateful. Now it is back to my life. I have a new perspective this time.  I have become reacquainted with many things in the past couple of months that have been absent in my life since cancer found its way in to roost. It has been a wonderful time and I am excited about what the future holds.

So for now that is all.  Oh, that and one of my favorite sunsets from the past couple of weeks:

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Sunset in Huntington Beach, something I am committing to seeing (hopefully) every day 🙂

I am so grateful for your continued prayers and support. It is so amazing and so wonderful. I am so, so very grateful.

Now I am off to see if I can convince a friend of mine that radiation won’t be the worst thing in her life. This is a much easier thing to do knowing that I am still cancer free.

I will be back here before “Pinktober” (blech) . . . so much to change, so much to do.

Much love and peace.

Gratefully yours,

Lisa