Komen, why’d ya have to lie to me?

Posted: February 3, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 18 Comments

thanks, Katie @ Uneasy Pink for the laugh!

Oh, Komen. Komen, Komen, Komen. Why’d you have to lie?

There might have been a chance — a teensy, weensy chance — that you could have come out of this firestorm with a speck of dignity and integrity left, but you blew it. Big time.

Sigh.

Well, the good thing about Komen’s decision to kick Planned Parenthood to the curb — and to bold-faced lie about the reasons behind that decision — is that we bloggers will have fodder for days. Thanks, Komen. Thanks for being sneaky and deceitful and for showing your true colors. If I weren’t so sad by the fracas and the potential to help so many that has been so foolishly pissed away, I might be grateful. But I’m not grateful. Even though it’s nice to have a definitive answer on this organization’s true motive, and it’s nice to know for sure that Komen is not what it claims to be, I’m not grateful. I’m mad. And anyone who knows me will tell you that once I get mad, I stay mad. For a long time.

As I mentioned in yesterday’s post, I sure wish Komen would have just been honest about its motivations to drop PP in the grease. The fact that Komen continues to hide behind the travesty of an ongoing “investigation” instead of coming clean about its reason for breaking with PP sickens me. Komen founder and chief executive Nancy Brinker continued the lie in a news conference yesterday, saying that SGK’s decision to pull its funds from PP has nothing to do with politics or abortion.

Raise your hand if you believe one word that comes out of this woman’s mouth. 

Here’s the thing — I don’t care if Komen wants to pull its funds from PP. I disagree with the wisdom of that decision, but Komen certainly has the right to do what it wants with its money. But don’t lie to me.

For Brinker, and by extension SGK, to continue to say that the decision to pull out of PP resulted from changes to the grant-making procedure makes me sick. She said in her press conference, “We think this is the right thing to do from a stewardship standpoint.”

Maybe Brinker thinks the general public is too dumb to see right through this. Sorry, Brinker, but I’m not stalled by your rhetoric, by your multi-syllabic alliteration.

I’m also onto the fact that Brinker’s assertion directly conflicts with SGK board member John Raffaelli, who spoke about this ugly issue to The New York Times and said, and I quote, that SGK made changes to that grant-making policy specifically to end its relationship with Planned Parenthood. From The Times:

“Raffaelli said that Komen had become increasingly worried that an investigation of Planned Parenthood by Representative Cliff Stearns, Republican of Florida, would damage Komen’s credibility with donors.”

Guess what, Nancy Brinker: you didn’t need to worry one bit about Stearns’s trumped-up, bogus witch-hunt of an “investigation” damaging Komen’s credibility with donors. YOU DID THAT ALL BY YOURSELF.

Really, wouldn’t it have been easier to come clean? To be honest? To tell the truth, which is that Brinker and SGK no longer wanted a business relationship with PP because of a difference in political views? To that end, can someone please explain to me how not one word has been uttered by SGK about its 5-year, $7.5 million research grant to Penn State’s Milton S. Hershey Medical Center? Last I heard, the sexual-assault scandal at Penn State involving Scumbag of the Year Jerry Sandusky involved a federal investigation of the university. How can 40 counts of sexual abuse over a 15-year period be ok, while a mere 3 percent of PP’s services being dedicated to terminating unwanted pregnancy is worthy of an epic break-up? The hypocrisy is staggering.

Also staggering is news that local Komen affiliates were not told of the break with PP. Betsy Kamin, president of Susan G. Komen for the Cure Houston, told The Houston Chronicle “The affiliates were not made aware of it [the decision] in advance, so it was shocking to us.”

The local Planned Parenthood president and CEO Peter Durkin had something to say about the decision, too: “As a leading health care provider in our community, Planned Parenthood is trusted to help women identify breast cancer early. We are deeply alarmed that the Susan G. Komen for the Cure Foundation appears to have succumbed to political pressure from a vocal minority.” He went on to say that the Gulf Coast Planned Parenthood was “deeply disappointed” with Komen’s decision.

He’s not alone.

Mollie Williams, SGK’s top health official, resigned from SGK over this. Williams, the director of community health programs for SGK and in charge of deciding how to allocate $93 million in Komen grants to more than 2,000 community-health organizations said, “I have dedicated my career to fighting for the rights of the marginalized and underserved,” she wrote. “And I believe it would be a mistake for any organization to bow to political pressure and compromise its mission.” So the person in charge of handing out Komen’s money–who definitively knows who is worthy of receiving those funds–disagrees strongly enough with the decision to end the relationship with PP. Not just that, she disagrees strongly enough to quit her job. Wow.

According to The New York Times, Dr Kathy Plesser, a New York City radiologist and member of Komen’s scientific advisory board, said she would resign if Komen did not reverse its decision. “I strongly believe women need access to care, particularly underserved women,” Dr Plesser said. “My understanding is that by eliminating this funding, it will jeopardize the women served by Planned Parenthood in terms of breast care.” Dr Plesser went on to say, “Komen is a wonderful organization and does tremendous things for women, but this is straying from their mission, and it’s sad.”

 All 7 of California’s SGK affiliates are “strongly opposed” to the decision, and the top official for SGK California joined Williams in resigning from the organization. Those affiliates are working hard to overturn Komen’s decision. So far, 26 U.S. Senators have called on SGK to reconsider its decision, saying that “it would be tragic if any woman . . . lost access to these potentially lifesaving services because of a politically motivated attack.” I suspect this is only the beginning.

The Race for the Cure, which is SGK’s most iconic fundraiser, is on the endangered species list. The very first Race for the Cure was in 1983 in Dallas with 800 participants. Last year, there were 130 races worldwide with 1.6 million participants, according to Komen’s website.

The Philadelphia Inquirer interviewed Kivi Leroux Miller, a North Carolina-based consultant on nonprofit marketing strategies, who said Komen was “naive” to think it could distance itself from the abortion debate while doing the very thing that antiabortion Senate Republicans have been trying to do – defund Planned Parenthood. Naive and egotistical, IMHO.

“Komen has forever changed the way people will look at them,” Miller said. “Until now, they have successfully stayed out of controversial areas of women’s health care. They kept the message simple: save lives, race for the cure, pink ribbons. They’ve forever muddied that now. They’ve made it hard for women to figure out what they’re about – and that makes it harder to raise money.”

I know one Race for the Cure participant who won’t be forking out $40 to enter Houston’s 2012 race. That makes me sad, because last year’s race was a lot of fun. And if any of my crew plans to participate in an upcoming Race for the Cure (should there be any), don’t bother writing my name on the “In Celebration Of” pink sheet. Thanks but no thanks. I don’t need Komen to help me celebrate my survivorhood.

Don't bother

Komen’s decision has taken center stage — in the news, on the Web, in the blog-o-sphere, and in the twitterverse. It was front-page news in my newspaper today, and probably in those of every other major city. The Seattle Times features a great story today about a formerly dedicated Komen fundraiser, Celeste McDonell. A Seattle lawyer and breast cancer survivor, McDonell labels herself as a “longtime, passionate Komen advocate.” She’s raised serious funds for the cause, too, by spearheading a “Row for the Cure” event that in 10 years has raised more than half a million dollars for her local Komen affiliate. Last year alone she raised $84,000 in her event. McDonell’s law firm had just committed to sponsor the next “Row” fundraiser, but has put that on hold, she said. Instead, a commitment has been made to Planned Parenthood. “Our firm is a strong believer in social justice and thought this was a move that needed to be made,” McDonell said.

McDonell’s story is but one in a crowded field of former supporters who are now protesting Komen’s decision.

The American Association of University Women has cancelled plans to offer a Komen Race for the Cure as one of the activities at its upcoming National Conference for College Women Student Leaders (NCCWSL). Stating that the AAUW is “disappointed with the Susan G. Komen Foundation’s decision to strip funding for cancer screenings from Planned Parenthood,” the AAUW will not offer the Susan G. Komen Global Race for the Cure as a community service opportunity at its NCCWSL. For 27 years, college women from across the nation have attended the NCCWSL, but this year there will be no Race for the Cure.

Oh Komen. Komen, Komen, Komen.

You sure stepped in it this time.

I can understand the pressure. I can understand being torn. I can understand the desire to do the right thing (yet missing so spectacularly). But I can’t understand the dishonesty. I can’t fathom why SGK didn’t just say that after 5 years of partnership with PP, we’ve decided to go in a different direction. I can’t wrap my head around why Komen had to lie to me.

 

 

 

What not to buy me for my birthday

Posted: May 27, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , , , , , , , , , , | 14 Comments

If you’re still searching for the exact perfect gift for my upcoming birthday, here’s a tip: don’t buy this.

promisemefragrance.com

It seems the marketing machine at Komen is looking to get a little more mileage from CEO Nancy Brinker’s book by cross-promoting a Promise Me perfume. Thanks to my blog friend Katie at Uneasy Pink for bringing this to my attention.

The more I learn about the Komen organization, the more I resent the “for the Cure” part of its name. IMHO we pink-ribbon girls do owe a debt of gratitude for the de-shaming of our disease compliments of Komen, but I don’t yet see what the organization is doing “to end breast cancer forever,” as it says in its mission statement.

komen.org

We all know the story: Nancy Goodman Brinker promised her dying sister, Susan G. Komen, she (Nancy) would devote her life to ending  breast cancer forever. Suzy was diagnosed in 1977, in the dark ages of BC, and sadly she died from the disease at age 36, leaving behind 2 young kids and a grieving family. Give the Goodman family credit: they channelled their grief and put it to good use. In 1982 Nancy’s promise became Susan G. Komen for the Cure® and “launched the global breast cancer movement,” whatever that means.

Komen says that today it is “the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures.”

Perhaps Komen is best known for its Race for the Cure®, which has raised a ton of money and Komen claims to have “invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.” I love the idea of an army of pink in races across the globe. Walk, run, push a stroller, whatever, but get kitted out in pink and raise some serious cash. No argument from me on this one.

I wasn’t well enough to do the Houston race this year, but several people I know did, and the race was a success, financially and from a feel-good standpoint.  One of my sweet friends, Paula, did the race in Salt Lake City and was kind enough to put my name on her back, something that touches me to the depths of my soul.

I have no argument with Komen’s claims to be the BC authority, nor with the money raised. However, it does bug me that Komen’s quest for “the Cure” has been so fruitless. While I very much appreciate Komen making BC the most glamorous cancer, where is the Cure? Komen has been working since 1982 to find it, and yes it certainly is a complicated bugger, but I’d sure like to know what progress has been made.

Forgive my pessimism, but I don’t see what Promise Me perfume is going to do to find the Cure. Katie was kind enough to break down the math on Komen’s latest marketing cash cow, and basically here’s how it plays out:

A 3.4-oz bottle of Promise Me Eau de Parfum sells for $59.00. Of that, 13.5% goes back to Komen , but only $1.51 per bottle will be spent on research.

No, that’s not a type-o.

$1.51 a bottle goes toward research.

Now, I’m not going to get into the many ways in which this is completely whacked, but suffice to say that $1.51 a bottle isn’t going to find “the Cure.”

I’ve looked at Komen’s figures before and was shocked to see how precious little is devoted to research. I’ve heard survivors who do the Race for the Cure complain that every penny of the entry fee goes to cover administrative expenses. Again, where is the Cure?

At the risk of sounding like the granny in the old-school Wendy’s commercials who asked “Where’s the Beef?” I do wonder where’s the Cure.

googleimages.com

A quick peek at the charity navigator website talks a lot about Komen’s program expenses, fundraising expenses, and administrative expenses, with nary a mention of research.

Thus, I will not be buying the new Promise Me perfume, no matter how seduced I am by its “alluring Floriental fragrance combining classic elegance with a modern twist.”

I don’t even know what Floriental is, but I know I don’t want it. Even though its “initial impression is fresh and uplifting.” I can get fresh and uplifting from a bar of soap, thank you very much.

The marketing material claims that “as the fragrance becomes one with your skin, the floral bouquet blossoms in the heart, revealing sensual femininity.”

Oh, so that’s how I get my sensual femininity back after having both breasts chopped off? By spritzing some Floriental toilet water to lend “warmth and opulence and envelope the senses with a long-lasting trail”?????? How about find the Cure, so women like me don’t have to go through what I’ve been through? How’s that for an idea?

Maybe the “top notes of mandarin, bergamot, and blood oranges” blend nicely with the “base notes of white patchouli and creamy musk” to accomplish a good scent, but if you know what “sparkling yuzu” is will you please let me know? And tell me what it smells like.

Because I think it’s the smell of innocent consumers being hoodwinked.

You’ve got 5 more shopping days until my birthday. Don’t bother with the Promise Me perfume.


Apropos

Posted: February 28, 2011 | Author: | Filed under: breast cancer, drugs, infection | Tags: , , , , , , , , , , , , , , , , , , , , , | 6 Comments

Two pieces of news today, all contained in one handy-dandy post. First, this comic made me laugh, even though it’s not applicable to me since I need both sides. Luckily, I don’t have to save up for one or both sides. Thanks to the Women’s Health and Cancer Rights Act of 1998, it’s covered.

So for those litigious souls out there who’ve pestered me to “make sure the doctor/hospital/insurance company/orderly/mammogram technician/parking booth attendant/janitor pays to clean up the mess that infection caused,” you can rest assured that I’m getting what’s owed me, so to speak.

Yes, people have actually said that to me. That I need to make sure somebody else pays for what happened to me.

Cha-ching.

If only it were that easy. Or if only I were that shallow, or had the energy to try and create a lawsuit, then all my troubles would be over.

As if.

I don’t hold anyone responsible for the post-surgery infection any more than I hold the sun responsible for rising each day. Some things just happen. Yes, I know there’s a scientific reason for the sun rising, something to do with the pull of the tides or the rotation of the Earth or some such phenomenon. But that’s not nearly as interesting or titillating as ambulance-chasing lawyers drumming up skeevy lawsuits.

If not for the Women’s Health and Cancer Rights Act, I’d be calling Jim Adler, the “Texas Hammer” real soon. The “tough, smart lawyer.” I bet he could get me top-dollar for my medical misfortune. But I’ll leave him alone for now and let him focus on the important cases, like the nasty 18-wheeler wrecks in the middle of the night.

Thanks to the WHCRA, a federal law says my insurance company has to pay for my reconstruction. The law refers to “mastectomy-related services,” which sounds a lot more exciting than it really is. Wonder if I can campaign to make mani-pedis part of the “mastectomy-related services.”

I first heard about the WHCRA while reading Promise Me, by Nancy Brinker. She’s Susan G. Komen’s little sister, who made the promise to her dying sister in 1981 that launched the global breast cancer awareness movement.

Thankfully, “breast cancer” is now a household term instead of a shameful secret, as it was in the past, and health insurance companies can’t deny the coverage required to fix the problems that breast cancer surgeries and treatment create. I could fill this entire screen with facts & figures, befores and afters, thens and nows, of breast cancer. But instead I’m thinking about the WHCRA.

Because of the WHCRA, I don’t have to worry about whether I can afford to clean up the mess that breast cancer (and its bad-news friend, the post-surgical infection) created. I don’t have to make a t-shirt that says “Will Work for Boobs” or wash dishes at Dr S’s house in exchange for my surgery. As if being diagnosed, going through surgery and dealing with the infection weren’t enough. I’m so glad I don’t have to sing for my supper as well.

The second piece of news is pretty important. Maybe not as important as the WHCRA, but only because that affects a whole lot of women, and this bit of news affects me and me only.

Today, Monday, February 28, 2011 is my 200th day of oral antibiotics.

Yes, you read that right: I have been on oral antibiotics, twice a day every day, for the last 200 days. Bactrim and Minocycline, also known as “these damn drugs,” have been my constant companions for 200 straight days.

I’m not great at math and am too old to waste time trying to get better at things that are useless, and for me, trying to get better at math is useless. It’s just not going to happen. I know I should believe I can fly, touch the sky, be whatever I want to be or some other such drivel as churned out by Mariah Carey and the like, but I don’t believe I can get better at math, and frankly, I really don’t want to get better at it. I’d much rather spend my limited time and energy on other stuff, like playing as much tennis as humanly possible.

But if I were better at math, I would be able to say what percentage of an entire year I’ve already spent on oral antibiotics. Oh, never mind; who cares. Let’s just suffice to say that 200 days is a really, really long time, and if you think otherwise, I don’t want to talk to you. Ever. Or at least until I get off these damn drugs.

If you want to know why I’ve been suffering this cruel & unusual punishment for so long, read this. I just can’t explain it again; I’m too exhausted from trying to do that math and figure the ratio of time spend on these damn drugs verses time not spent on them. Well, here’s the Cliffs Notes version of the story: I got an infection from the tissue expander on the right side after my bilateral mastectomy on May 13, 2010. The infection was (is?) tricky and was hard to diagnose, but we finally learned, in mid-August that it was a mycobacterium fortuitum, which is a wily little bugger that is insidious and hard to kill. The most powerful weapon against this bug is two different antibiotics taken twice a day for a very long time. Like forever.

200 days is a blip in the universe of long-term drug therapy. Every time I feel sorry for myself for still having to take these damn drugs, I remember my infectious disease docs chuckling softly and shaking their heads at my pitiful temper tantrum and infantile whining about why I still need to be on these damn drugs. They tsk-tsk me and handle me with the kid gloves I require of them, then sweetly remind me that many of their patients are on antibiotics for 2 years. 2 years. I’m no math genius, but I’m pretty sure that’s longer than 200 days.

Ok, so a little perspective is good, but still, I feel the need to mark the 200th day of twice-daily drug therapy. Judge me if you must, but consider this: there’s more to taking these damn drugs all this time than meets the eye. Think of the numerous trips to Walgreens to pick up said drugs, along with the other prescriptions I have to take, and the fact that none of them start on the same day, so one of them always needs to be refilled. Thank heavens my sweet oncologist added me to his personal pharmacist’s home delivery service, and now the FedEx man brings these damn drugs right to my front door, all at once. I’m sure they miss me at Walgreens.

There’s the sheer volume of pills I’ve swallowed. Twice a day every day for 200 days is a lot of pills. Again, I’m no math genius, but wow that’s a lot of pills.

There’s also the stress of remembering to take these damn drugs twice a day every day. It’s such a habit for me now that it will seem strange to not be doing it, when that day comes. Strange, but wonderful, too. I can’t wait. Actually, I can’t even think about it because I don’t want to consider how many days I will have been on these damn drugs by that time. But you know I’m going to be counting, right?

And then there’s the issue of what foods don’t mix with these damn drugs. Can’t eat dairy products for an hour before or two hours after I take these damn drugs, because dairy can inhibit the drugs’ absorption. If I’m going to go to the trouble to take these damn drugs, I certainly want them to get into my system and fight that mycobacterium.

And last but not least, there is the scorched earth tendency of the antibiotics to kill the good bacterium in my tummy, along with the bad bacteria elsewhere. I’ve gotten used to the near-constant morning sickness that comes with 200 days of these damn drugs, but I still dislike it. A lot. When the extreme nausea comes to call, no matter what I eat or don’t eat, whether an hour before or two hours after, I feel rotten. And don’t tell me your hard-luck story of how you had morning sickness every single day of your pregnancy, because at the end of that pregnancy, you got the best prize ever: a baby. Well, depends on the baby, I guess; some of them aren’t such prizes in the early days. Maybe the best prize ever is a puppy. To some people.

So by golly, I’m gonna celebrate having made it through 200 days of these damn drugs.

We highlight a president’s first 100 days in office, with either a favorable or scathing review of the job he’s done thus far. If our country can create a tradition based on a mere 3 months, I am well within my rights to celebrate having survived 200 days of these damn drugs. And since we all know it’s 200 days and counting, with nary an end in sight, I certainly will celebrate this milestone. Right now. Today.

I don’t know if it’s a nationwide tradition, but at my kids’ elementary school, they celebrate the 50th and the 100th days of school. Kindergarten especially makes a big deal out of these milestones, as well they should. Macy invited me to come to one of these celebrations and even talked me into wearing matching poodle skirts for the ’50s theme. And celebrate we did! A lot of those little kindergartners probably don’t know from one day to the next whether they’ll make it in the dog-eat-dog world of all-day school. No naps, no crying allowed, curriculum requirements that increase every year; it’s a jungle in there. That’s why they make a point to celebrate the milestones along the way, like the 50th and the 100th day. Why isn’t there a celebration for the 200th day of school, like there is for my 200th day of these damn drugs? Because the kids only go to school 180 days total each school year. So I’ve been on these damn drugs longer than the number of school days in an entire calendar year. Egads.

Ya know how we just watched the Super Bowl a few weeks ago? On February 6, to be exact. Well, on July 20th of last year, the media outlets that handle the infamous Super Bowl advertising spots were counting down 200 days until the big game. So in July, they’re thinking about selling ads during the Super Bowl, which won’t be played until February. End of July to first of February. 200 days. Curiously enough, on July 20th of last year, when the media hawkers began the countdown, I was in the hospital, for the second time post-mastectomy, with the infection.

Another significant stretch of 200 consecutive days of anything is the so-called 200 Days of Dread: a period from the spring of 1942 to November 3, 1942 in which Germany’s Afrika Korps under General Rommel marched toward the Suez Canal and Palestine, causing Jewish people there considerable and understandable stress. Not to minimize the significance of this event in World History, but yes, I’ve been on these damn drugs as long as the Afrika Korps threatened the Palestinian Jews.

And guess what? I haven’t missed a single dose of these damn drugs in all of the 200 days. Not one dose. Surely there’s a trophy for that.