Friday, February 25, 2011

My View of Breast Cancer According to Brinker

Whenever I set about writing a blog post, I have in mind that I will try to be as objective as possible, particularly if I am discussing a subject that I know to be contentious.  The trouble is, it's getting harder and harder for me to  be fully objective when I am discussing issues related to breast cancer fundraising and research.  After all, as a person living with Stage IV breast cancer,  research is tantamount to my hopes for recovery and a long life.

Today's post is a prime example.  Recently a reader sent me a link to a televised interview between Tavis Smiley of PBS and  Nancy Brinker, the CEO and founder of Susan G. Komen for the Cure®.  The interview aired on October 1, 2010 to mark the start of Breast Cancer Awareness month, and to promote the launch of Brinker's book,  Promise Me: How a Sister's Love Launched the Global Movement to End Breast Cancer.

Click here for a link to the interview and a full transcript.

I started watching the full 13-minute interview with an open mind.  But as I continued to watch the interplay between Brinker and Smiley it dawned on me that my goal of remaining objective was going to be an impossible task.   I run my fingers through my newly short hairdo and am reminded that soon there will be no hair  to run my fingers through. As I write down notes during the interview,  I realize how difficult it is becoming for me to write with a pen.  Tumors are now pressing on vital nerves,  and my writing arm is rapidly losing strength, and certain fingers are numb.  Writing by hand has become a laborious task with the end result looking like something akin to chicken scratchings.  In addition, I'm so tired from my new chemotherapy regimen that concentrating for any length of time seems a monumental feat.  Finding the energy to blog is getting harder.  I'm sure chemo-brain is becoming a factor as well as I struggle to  find and, indeed, spell common words as I construct my sentences.  Yes, objectivity was being replaced with the difficult realities of metastatic breast cancer and treatment.

But I persevered with the interview, waiting for Nancy Brinker to say something that might give me hope.  I watched with anticipation even thinking that her words might convince me that Komen's activities are beyond reproach.  Have I been wrong in questioning the activities of the Komen organization?   Then I had one of those "ah-ha" moments that Oprah always talks about.  I was watching and listening to this interview with the eyes and ears of a woman living with metastatic breast cancer.  I was already angry when I started watching the interview.  I wanted to know: Where is my cure? When is my cure?  I'm sick, and I don't have time to waste.  Where is all that money going?  I watched, I listened and I waited.  Would my anger transform when I got the answers I needed?

Unfortunately, this is what I heard. That the public can't handle the unattractive truth about breast cancer.  That the only way to raise money for the cause is through feel-good experiences and products.  That people shouldn't think about dying from this disease.  That 5-year survival rates for early breast cancer are the only statistics that matter.  That metastatic breast cancer is still unmentionable and a lost cause financially.  That more of Komen's money is going to research than is actually the case.

And so it went, and with each passing minute the angrier I became.  There were many points that I wanted to take issue with to present a fair and balanced discussion.  As the interviewer and in the interests of responsible journalism, Smiley should have dug deeper.  He didn't, and instead this interview sounded to me like a paid advertorial for the Komen organization.

Here are my thoughts.

JOYFUL CONSUMPTION

(Minute 1.34) Nancy Brinker ("NB"):  "....[I] realized the only way to deliver really conventional messages about breast cancer was through products and things people were doing that they weren't afraid of and enjoying what they were doing."

What does she mean that products are the only way to deliver messages about breast cancer? Is the only way for the public to become informed about a disease through sound bytes and logos? What about curriculum, education, information, scientific evidence? Does NB really think that products contained in my Pink Boob Awards Gallery give anyone useful information about breast cancer? Does the Hope Gun and other products featured in my Selling Hope post do the job of connecting the public with the realities of breast cancer?  What do any of these products have to do with "conventional messages about breast cancer?"

I think what NB really meant to say was that products are the only way to attract corporate sponsors interested in cheap advertising, and a way to tap into the emotional psyche' of a consumer population that wants to "do good".  Komen's approach is the perfect marriage of altruistic appearances and a corporation's inherent motivation to sell products that generate  profits and banner-worthy public relations opportunities.

My disease has become a marketable commodity and nothing more.   The sad irony in all of this is that I believe Komen's approach to cause-marketing has only served to undermine the seriousness of this disease in the public's perception.  With products like those depicted in my gallery, pink guns and ridiculous novelty items, breast cancer the disease is becoming a laughing-stock.  The public is being conned out of their hard-earned money with no end to the consumrist circus in sight.   Meanwhile I sit here with my hopes for recovery; no better than they were when Susan G. Komen herself was fighting the disease all those years ago.

SMILE, CELEBRATE, PRETEND.....



(Minute 2.06) NB: "Also, the Race for the Cure and the other events that we have because our job is to celebrate hope and to give people a vision for the future, not to depress them all the time and say, you know, you're gonna die from this."


This one really gets me.  Celebrate hope? What hope is she talking about?  The hope that CJ" (Dian) Corneliussen-James, president of METAvivor Research and Support, Inc, wrote about in her guest post on this blog entitled "Trying to Stay Alive on Two Percent"? Less than 2% of all cancer fundraising is allocated to metastatic cancer research, of which breast cancer is a subset.  There is nothing in that statistic that gives me a reason to celebrate hope or gives me a vision for the future. In fact, this data tells me that I have every reason to be pessimistic, not optimistic.  What "vision" is there for people with Stage IV when their prognoses are grim, their treatments are grueling, debilitating and generally temporary in success.  Yet their self-proclaimed leader of advocacy implies a "don't worry, be happy" attitude.    Easy for you to say NB with your "celebrations of hope" and "visions for the future."

How nice that NB wants to protect us all  by not talking about the depressing, yes depressing, fact that 40,000 women each year in the U.S. and hundreds of men are still dying from this disease.  Depressing? You bet.  Truth? Absolute.  Read the National Breast Cancer's Coalition 2020 White Paper for more sobering realities on how little progress we have made in the fight to end this disease.  

Nothing to celebrate there either.  Perhaps it's time for Komen to recalibrate the message?



FROM ABSENT TO ATTRACTIVE


(Minute 4.20) In discussing why breast cancer wasn't talked about in the past...

NB: Because it wasn't considered attractive or it wasn't considered the thing to do, to talk about cancer out loud.


I find NB's use of the word "attractive" in this sentence to be an interesting choice.  Does she imply that through the work of her organization, breast cancer is now considered "attractive".  Certainly, this is precisely the issue raised in a recent essay by a writer's collective that I featured on this blog,  entitled Miss Pink Elegance.  Yes, we speak about breast cancer now, but the culture seems to be largely constructed around pink ribbons and images of pink pleasantry and beauty.  Ironically,  predominant breast cancer culture is still not really about the disease itself.

When was the last time you saw an image like this at right? Almost never, except perhaps in your surgeon's office?  This is the ugly truth.

There is still nothing attractive about breast cancer.

Unless you subscribe to Komen's vision for breast cancer which is illustrated by a recent race advertisement on the left.    This is the image of breast cancer that the public is being sold.

Thanks to Komen, breast cancer (the cause) is now attractive. This is supposed to quell my anger? Hiding the truth and prettying it up with makeup, smiles and fashion? No.  I'm no less angry.







MISDIRECTING THE PUBLIC


(Minute 4.33) NB: "You know, the five-year survival rate for very early breast cancer in those days was 74 percent. Today, if everything's done right, it's almost 98 percent."


(Minute 10.30) "..[w]e can conquer early breast cancer"


I've heard this 98 percent statistic quoted many times.  The problem with this statistic is that it's often quoted out of context and overused.  Look at survival rates.  For which group does the 98 percent survival rate apply? Not Stage IV.  Not Stage III.  Not even Stage II.  Check out the American Cancer Society's statistics.  Increase stage:  Decrease survival.  By focusing on a five-year statistic that only applies to a small subset of the diagnosed, NB  contributes to the misconception that breast cancer is a completely survivable disease.

This disservice to the diagnosed doesn't address existing controversy about diagnosing and treating pre-cancerous (Stage 0) conditions; conditions  that may never evolve into anything life-threatening.  Are these types of conditions included in this statistic thus skewing the survival rates?  At the same time the 98% statistic  and the statement that "we can conquer early breast cancer" doesn't speak to the fact that treating an early stage breast cancer is no guarantee that metastasis won't ever occur.  They do.  And sometimes they do many years after an original diagnosis.

NB does not quote survival rates for advanced stage and metastatic disease.  Why?  Because the picture isn't as rosy or "attractive".




THE ECONOMICS OF LATE-STAGE CANCER


(Minute 6.56) Discussing the increasing incidence of cancer.....

NB:  "There's one thing we know. We can't afford - and no one in the world can afford - to treat all the late-stage cancer."

This is the closest NB gets to talking about metastatic breast cancer.  In fact the word "metastatic" is never used in the entire interview.  It is simply alluded to as "advanced" or "late stage".  Does this statement imply that the issue of metastatic breast cancer is not one that Komen wants to address?

I certainly hope not.  Komen has recently appointed Danny Welch PhD, an expert in metastatic cancer,  to their Scientific Advisory Council.  Let's hope that in light of the above statement by NB, that his appointment is not simply a token gesture and  that Komen can afford to fund meaningful and productive research in this area.

Since Komen spent 41% of its 2009 budget on education and only 21% on research, it's no wonder NB doesn't think anyone in the world can afford to treat it.

But lives depend on it, mine included.



WHERE THE MONEY GOES

(Minute 11.19) NB: Well, we have affiliates in 120 cities throughout America and their single task is to make sure they do needs assessment in their community. They fund treatment, screening and education programs in their communities basically focused at low-resource people. With the 25 percent that returns to the national foundation, that's where we fund the cutting edge research.


So if you look at our resources as a pie, basically a little less than half of our money goes to cutting edge research, prevention, causation, etc. The rest of it goes for community outreaching care across all cultures. 


Anger rises.  I actually did look at Komen's "resources as a pie" and I analyzed how Komen spends its valued resources. (Refer to my three-part "Komen by the Numbers" series of blog posts for more in-depth discussion on Komen's financials).

First of all,  Komen spends a LOT less than half  of its revenues to fund research.  In 2009 the "pie" looked like this.  21% of Net Public Support and Other Revenue went to fund research.  That's not even close to the "little less than half" that NB quotes above.


How can an organization that spends less than a quarter of its financial resources on Research be "for the Cure"?  It's a question that I continue to ask.

CURES OUTSIDE THE LABORATORY?

(Minute 11.40) NB:  "No other breast cancer organization has this broad of mission because we don't believe you can cure a disease in the laboratory alone."


I don't understand this statement at all.  If you can't cure a disease in the laboratory, then how can you cure it?  Haven't all the major medical cures come out of a laboratory?  Does NB know something that the rest of us don't? Based on Komen's resource allocations, it seems that she believes that screening, treatment, and education can result in cures!  Is this Komen's justification for not making research a priority in its funding allocations?  Well, yes, that's exactly right.  See my post, "Komen By the Numbers" for a discussion on how Komen apparently defines the word "cure".

I've said this before and I'll say it again; screening, treatment and education will never result in a cure for my cancer, or any other late stage cancer.  Game-changing research, the kind that is generally done in a laboratory,  is the only hope that I have that my cancer will be cured.

But if I'm wrong on this, and there's a way to cure my cancer outside of a laboratory,  please Komen, I beg of you to let me know soon.

In the meantime I'm still angry, and for good reasons.

27 comments:

  1. Just found you the other day, like your writing, and I agree with you. I have ovarian cancer and am so sick of pink culture....

    ReplyDelete
  2. Anna, impressive as usual, even more so since you're so tired. I'm offended by the Race ad. What the f? Why are they making it seem like something women should aspire to? It's cancer! The ad should have the other photo. That's what we're fighting for. I'm sorry, you didn't hear any answers worth your time. I'm sorry Komen continues to miss the boat on research dollar allocation. What's it going to take?

    ReplyDelete
  3. This interview is astounding. From minute 1 to minute 13, each element of Brinker's world view speaks to what has gone wrong in pink culture. Making breast cancer attractive and joyful while selling products, failing to support those with late stage disease, misrepresenting survival, and barely funding research is at odds with the mission to eradicate breast cancer. Yet at minute 12.01, Brinker states that Suzy would be "really proud because this organization looks like her." That's so hard to believe. Susan Komen died from metastatic disease, that very stage that is avoided, neglected, and painted over with glossy brush strokes to sell hope, corporate sponsorships, and simple awareness messages. You do have a right to be angry, Anna. We all do.

    ReplyDelete
  4. Outstanding post, although the fact that you have to be writing it from Stage IV perspective makes me want to cry, Anna.

    This 98% crap drives me nuts too. There is no mention of the possibility of over-treatment. If our technology is allowing us to catch cancers earlier, ones that never would have become life threatening, of course survival rates will go up.

    And if you catch a cancer that will end up as Stage IV at Stage I because of better detection instead of a couple of years later at Stage II like you would have a few years ago, is that going to stop it from progressing? I don't think so, since the same number of women are dying every year. However, the five year survival rates will go up. What about 10 or 15 years?

    I don't know. That's the problem. I DON'T KNOW. Survival rates have absolutely nothing to do with the fact that WE DON'T KNOW why some cancers progress to Stage IV, regardless of their initial staging.

    Argh. It's infuriating that it seems so impossible that even a reputable journalist like Tavis Smiley won't ask the tough questions.

    ReplyDelete
  5. You found the strength to share some much - I am amazed.

    In my state our Race for the Cure split from Komen about 6 or 7 years ago, in part for some of the things you saw in that interview. The community of survivors in New Britain, Connecticut, wanted to control the beneficiaries of their Race in the Park fundraising efforts.

    Much of it goes to what we call "bench research" and that means small funds for little experiments to see, believe it or not, if an "Aha" moment a researcher may have is worth pursuing with a larger study. It raises hope for us that don't live with the disease.

    Thank you for your strength. You remind us it is supposed to be a race.

    ReplyDelete
  6. I'm beyond angry. Your work has opened my eyes even more. What do we need to do to make a change? and make a difference. This is so frustrating!

    Keep up the great work. You are an inspiration to me. I'm sending you my best. Hang in there.

    ReplyDelete
  7. Madeline - thanks for commenting and welcome!

    Stacey - I've been sitting on this one for awhile now. It's a good question as to "what it's going to take". I'm certainly hoping to learn more at the NBCC's conference in May. I think it's going to come down to cooperation and collaboration between all the research entities involved to get the job done. And if Komen is prepared to add its financial muscle and come to the table in all other respects, then maybe we can get somewhere.


    Gayle - I think you are absolutely right in that this interview does illustrate everything that's wrong with pink culture. I found it so disturbing, that even though we apparently are comfortable talking about breast cancer now, NB still never talked about metastatic disease in precise details. It's still like the great unmentionable. It's so ironic that had Susan been born thirty years later, she'd be really not much better off in terms of her chances of survival. She was diagnosed at 33, the same age as me. That's what I find so sad.

    Katie - you got it one. None of the survival statistics mean anything when mortality rates haven't significantly changed in decades. All that's really happening is that women continue to be diagnosed with metastatic disease, with no scientific understanding as to why, and then are being kept alive a bit longer with incremental drug options, that generally fail sooner or later. And exactly right, where are the 10 yr, 15 yr, 20yr etc studies that would show any true meaning to this "98%" statistic? It's all in the context as usual.

    David - thank you so much for sharing this story about your local ex-affiliate. I have to wonder how many others feel the same way and have acted upon their instincts that something just isn't right ? And how many others continue with the charade because they are afraid to be the voice of dissension? I love your last comment, that "you remind us it is supposed to be a race"....I get it, you get it, why not Komen?

    Alicia - well you know your excellent work on the "Lawsuits for the Cure" blogs at WEGO Health really inspired me to continue this story. I am hoping that by bringing some of these issues and concerns out into the open, other people will start to feel like they can speak up and keep asking deeper questions. We can't expect change to happen if we remain silent.

    ReplyDelete
  8. Here is a link to a recent blogpost by the National Breast Cancer Coalition as part of their 2020 deadline to end breast cancer. They are convening a summit of experts on breast cancer metastasis in August this year. This is the kind of collaboration and cooperation that needs to happen if we are to move this fight forward. I will be waiting and watching with avid interest!
    http://breastcanceradvocate.wordpress.com/2011/02/23/breast-cancer-metastasis-changing-the-conversation/

    ReplyDelete
  9. Hey Anna!

    Awesome Blog, You go Girl!

    I was diagnosed w/ Breast Cancer (Stage II) @ 31 about a year and a half ago and I couldn't agree more! Komen makes me sick!! They should be soooooo ashamed of themselves! Ew! I have always loved the color pink, but since the day of my diagnosis I have always HATED the Ribbons... To me, they symbolize people profiting off of me! Ugh! People are always so surprised to hear that too- I am like the Black Sheep of Breast Cancer, Lol. They just chalk it up to me being angry (which I am BTW- I'm pissed!) but that's besides the point! It's so nice to meet a bunch of people who have the same views as I do! Hopefully we can all keep in touch.

    My Blog is called The Glamorganic Goddess. It focuses on making the changes that are IN YOUR control- when everything else seems so out of it (like switching to truly natural & organic beauty products). For the most part- I do product reviews, because most people are under the assumption that natural products don't work, but at this point- my life depends onas few toxins and chemicals as possible. Maybe we can trade links? Anyway, here's the link:http://theglamorganicgoddess.blogspot.com/.

    Keep up the great work & remember that you are so much stronger than you think you are!

    xo
    The GG :)

    ReplyDelete
  10. Anna. You amaze me. Your posts are so detailed and thorough. You dazzle me with your ability to write about this on so many levels. It's personal when you say, 'I don't have time to waste.' I feel your anger. I can also feel how you are struggling with your energy, and yet you still write.

    All your points are so well observed and argued with precision. Yes the 'unattractive truth' of breast cancer needs to be highlighted. The reality of breast cancer is 'depressing' and there are many 'sobering realities'. Too many.

    Like Alicia I feel 'beyond angry'. What happens beyond angry them? Change the conversation. Change the public's perception of breast cancer. Make it REAL. You are certainly doing that Anna. I applaud you. *stands up and claps very loudly*

    Well said Anna. Again.

    ReplyDelete
  11. Wow, Anna. An outstanding post. But I am absolutely sickened by Brinker's perspective. Like you, I would really prefer to be wrong about Komen's objectives & views toward breast cancer. Hate being right. It's positively chilling that she had so little to say about metastatic cancer when her own sister died of the disease. You'd think she'd be most passionate about late-stage breast cancer, wouldn't you? The irony is appalling...

    ReplyDelete
  12. Anna, First of all, I am sorry you are feeling all those physical difficulties, which makes me even more amazed with your perseverence. I do not understand Nancy B. when in fact, her sister died from metastatic bc. I cannot figure out the disparity in funding for research, other than someone must be lining their pockets. And that poster, the woman looks like a model?? I wonder if she even ever had breast cancer. Anyway, great work again on your part. You are making a difference, Anna. The personal "spin" you put on your posts makes them even more powerful. Thank you for that, I know it can't be easy for you.

    ReplyDelete
  13. GG - Welcome and I will be checking out your blog...

    Sarah - Thank you so much. You're right I am angry and this has become personal. It seems like my own situation has become a metaphor for what is not working in the fight to end this disease.

    Kathi - I want to be wrong too. But the more I look into this the less convinced I am and the angrier I become. And yes the irony is appalling....and chilling.

    Nancy - anger is a wonderful motivator I can tell you. I don't understand NB's perspective at all given what happened to Susan. Young women still today fight to be diagnosed. I should know, it happened to me. And because of this, young women are still at very high risk of being diagnosed at advanced stages. Some $2billion later and what's changed since Susan's time ? How would Susan's outcome be any different today, except maybe a few more years added to her life expectancy?

    ReplyDelete
  14. Anna,
    As you know, I try to find the good (I read Komen is calling attention to state funding cuts for screenings for poor women & they deserve credit for that) but I wholeheartedly agree with you that they've lost sight of where they came from with this big pink machine. Like you, I wonder what Susan Komen would think of what this has turned into and as I've said in my blog, I think they're turned into a brand. And that's a shame.

    With all that money, and all that muscle, they could be doing some real good for metastatic breast cancer. I do believe in screenings because fewer women would go through what you and others dear to me are going through--but where are the screenings for young women like you? And why aren't we devoting much more to research for metastatic cancers? That's an even bigger shame.

    Thank you for including the link to Breast Cancer Advocate & the metastasis summit. I will do what I can to pass that along.

    P.S. You are the most unflinching person I know in staring down the Beast. Your honesty in communicating what you're going through is amazing. And I think you're helping more women than you know.

    ReplyDelete
  15. the outrage i feel in hearing these excerpts can hardly be contained. what a sham. what a travesty for an organization that memorializes a woman who *died* from breast cancer.

    i want to say a word about "objectivity." i think that your position allows you to see a part of reality that is valid and real and needs to be shared. you are very systematic in your analysis of this hypocrisy, from your parsing of the funds to the parsing of brinker's words. you use data, both numerical and linguistic. you state the reasons for your objections, grounded in this evidence. this is a form of objectivity and rigorous argument in its highest form.

    don't confuse dispassion with objectivity. and given what you are sharing, you have every right to be passionate. in fact, it's your gift to us.

    brinker is messing with the wrong bitch.

    ReplyDelete
  16. Jacks- thanks so much for your comment. You'll get no disagreement from me that Komen is involved in good works, especially in serving under-resourced women. However like you I think they've lost sight of their mission and their priorities need to change.
    For me also, the the jury's still out on the screening issue. The thing is we still don't understand why one woman will develop metastatic cancer and one woman will not, regardless of staging at original diagnosis. So even if we screen more women, this is not necessarily going to reduce mortality rates unless we fundamentally understand metastasis; why it occurs and how to stop it. And you are right on the issue of younger women fighting to get diagnosed - it's still a HUGE problem.

    ReplyDelete
  17. CB - thank you for your comment. "Objectivity" is a concept that I struggle with constantly in writing this blog, so I thank you for articulating your thoughts on this matter. Until the day comes that I can think of my breast cancer in the past tense, you can be sure that I'll continue to share my brand of "objectivity" with the world.

    ReplyDelete
  18. I admire your candidness. I have written blogs about Komen in the past because they piss me off so much. I'm actually a lung cancer advocate. I too am sick of the pink ribbons. But Komen, the American Cancer Society, American Lung Association, Red Cross, etc - these organizations are so huge that they are mini small governments - gigantic corporations, who have lost site of the very thing that their reputation was built on. I am writing a book on the nonprofit industry, my experience having started my own, and the things that turn people off from doing good. I may reach out to interview/talk to you about a few things if you would be interested. I just found this blog via Twitter today and I plan on going back and reading all of them. Thank you again for disecting this interview. I couldn't agree more with what you've written. xoxo

    ReplyDelete
  19. Beautifully written! I want to link this to my blog.

    Feel as well as your treatment allows,
    Jill

    ReplyDelete
  20. Tracy - welcome and thanks for commenting. Good luck with your book - I'm sure there is plenty of material ! My email details are listed on this blog.

    Jill - thanks for stopping by. Please feel free to share this on your blog. Thanks !

    ReplyDelete
  21. I agree with everything that you have to say as I too have Stage IV Breast Cancer. Unfortunately, I had no signs even passed a mammogram before the bad news. I've ranted and raved about Komen ever since my diagnosis.

    Ironically, they roped by husband into doing a local event featuring a "special" taped message from Nancy Brinker boo hooing about Suzie and the promise that she made to her. After it was over, we both looked at each and asked if a Jerry Lewis Telethon broke out.

    IKomen is sucking the oxygen out of the room when it comes to breast cancer donations and their donors believe that their money is actually going to a cure.

    There was a great article in the US News and World Report titled "Thinking Pink Hasn't Helped Find Causes of Breast Cancer" on October 6, 2010 by Deborah Kotz. Why am I mentioning this? Because this is about Komen spending millions of dollars on lawyers fees to trademark, "Think Pink," "Pink Ribbon" etc. They sue everyone that they think is using their trademark including a small charity event in Alaska.
    Komen is getting arrogant.

    So is there a point? We need to do something to call attention to our problem (breasts chopped off, horrible drugs, intense pain, you name it). The best way is do that is get traction in the actual media. We need to forward stories about this to the health reporters at regular and/or cable news networks, magazines, newspapers and Internet sites including to the reporter above. Komen does this so to why not beat them at their game. If there is walk in your town, send an announcement to the news stations that your friends are sponsoring a stay at home and sending money to a better organization.

    Does anyone have media contacts? Do your friends?
    Spread the word.

    What about your doctor? My doctor resigned from the local American Cancer Society board. Can't we all do some lobbying with the medical personnel that we come in contact with. We also need to start asking rude questions like why isn't there more met research. What are they doing to push that forward effort forward. Did they report you to NHI? Why don't they sponsor local trials?

    The unions in Wisconsin know that a good media shot is protesters beseeching the capital (truth in writing if they don't win, we all might as well ship everything to China). It is worth a lot of publicity. Where is Komen located? What if we had people picketing in front of their offices with signs that say, "Stage IV BC Where's My Cure?" The same goes for Congress. The Breast Cancer Coalition collects funds to lobby Congress. They're too polite. Wouldn't it be better for their local affiliates to request appointments back to back with their local politician on their home turf. I'd say picket but most these offices have security that won't allow it.

    Something a lot easier is to start is a Facebook campaign and pass that along to everyone to get people to post or like. Has anyone thought doing a Twitter campaign where everyone starts Twittering at the same time on the same topic like, "Not Pink."If we start trending on regular basis we could really pique the media's interest.

    Sorry about this. I am sick of swapping notes on treatments. I don't want to fade out without a damn thing to show for the screwing that I have gotten (and not in a literal sense). Bottom line Komen, oncologists, radiologists, surgeons don't want to find a cure it would put them out of business.Under the word, venial, in the dictionary is Nancy Brinker's picture.

    ReplyDelete
  22. Anna, you are a brave woman having to deal with such a terrible situation. I find it amazing that you are able to inspire so many people, I hope it encourages you and give you strength in the better and worse days alike. keep writing, it does a lot of good.

    ReplyDelete
  23. JBroo - weclome and thank you for everything that you have to say. You're absolutely right in that we do need to get these issues out to the general public. However we also need to engage the breast cancer community as well, because I have found that many are unaware of what is going on or the issues faced by women dealing with BC mets. Whether consciously or not, there is a little bit of an "us" and "them" feeling, in that many are supportive of Komen/pink, although I suspect this is because they have never asked the deeper questions, or choose to simply ignore. I still haven't figured out exactly why that is, but the discussion is certainly still evolving. Where do we go from here? Another issue that I am still thinking about, but I know for certain that we MUST keep talking about this and sharing with our communities. The best I can offer at this point is to say "Watch this Space". This aint over.

    Ron - thanks for the encouragement !

    ReplyDelete
  24. Great post and right to the point. I don't know if this is actually the best place to ask but do you guys have any ideea where to hire some professional writers? Thx :)
    ACDelco 15-71971 Blower Motor Control Module

    ReplyDelete
  25. Excellent post. I was checking continuously this blog and I'm impressed! Extremely useful info specifically the last part :) I care for such information much. I was seeking this certain information for a very long time. Thank you and good luck.
    Nanuk 925 Case with Cubed Foam (Yellow)

    ReplyDelete
  26. It is the best time to make some plans for the future and It is time to be happy. I have read this post and if I could I want to suggest you some interesting things or suggestions. Perhaps you could write next articles referring to this article. I want to read even more things about it!
    Cole's BR20 20 Pound Blue Ribbon Blend Seed

    ReplyDelete
  27. Good write-up, I'm regular visitor of one's website, maintain up the excellent operate, and It's going to be a regular visitor for a long time.
    Nanuk 925 Case with Cubed Foam (Silver)

    ReplyDelete