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.

 

 

 

I Stand with Planned Parenthood

Posted: February 2, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , | 24 Comments

“The nation’s leading breast-cancer charity, Susan G. Komen for the Cure, is halting its partnerships with Planned Parenthood affiliates—creating a bitter rift, linked to the abortion debate, between two iconic organizations that have assisted millions of women.”

That’s a great lead from the Associated Press.

Too bad it’s attached to such a sorry story.

When I first heard the news, I resisted the urge to blog, knowing that my anger at Komen would create a flaming piece full of emotional ranting. Today is marginally better, and while this piece is sure to be full of anger at Komen, hopefully it won’t be too flaming.

I’m certain that much was written about this topic yesterday by my fellow pink ribbon gals in the blog-o-sphere. I’m equally certain that their writings are eloquent, thoroughly researched, and well-thought-out.

Mine, not so much. I’m writing off the cuff and emotionally. I’m mad. No, wait — I’m pissed. I’m disgusted. I’m disappointed. I’m sad. I’m upset.

This story weighed on my mind all day yesterday, and I specifically resisted the urge to read every story I could find. I’m not usually good at walking away from a fight, just so you know.

That Komen would end its alliance with Planned Parenthood is bad enough. That Komen is walking away because of political BS makes me sick.

I’ll be writing a scathing letter to Rep. Cliff Stearns in Florida to tell him what a jackass idiot narrow-minded pork chop I think he is. I have no illusions that he’ll actually read it, but it will make me feel better.

Before I launch into it, let me be clear about one thing: this blog is not intended to promote either a pro-choice or an anti-abortion position. This blog is intended to highlight the atrocity of hiding behind that position and thereby compromising PP’s ability to provide breast health to the very women who need it most.

Ok, here’s the story: Stearns, aka jackass idiot narrow-minded pork chop, got his panties in a wad and launched an official inquiry into PP to see if public funds have been used to pay for abortions.

Since Stearns has neither a uterus nor a pair of ovaries, I can’t for the life of me fathom why he’d stick his nose into this issue, but people do idiotic, narrow-minded things every day.

Unfortunately, he is the chairman of the House Committee on Energy and Commerce’s investigative subcommittee, and he has the power to conduct a witch-hunt under the guise of public service. Apparently this goes back to Republican lawmakers’ failure to defund PP during federal budget negotiations last year. Since they couldn’t inflict their hack job then, they want to do it now, and it seems that Komen is along for the ride.

Stearns has demanded that PP cough up “internal audits conducted from 1998 to 2010; state-level audits going back 20 years; copies of policies certifying that federal dollars are not co-mingled in programs that fund abortions; and procedures for reporting crimes such as statutory rape, sexual abuse and suspected sex trafficking.” Oh, and he wants it on his desk in two weeks.

Cecile Richards, president of the Planned Parenthood Federation of America, said that PP will comply with Stearns’s request in a timely manner, “despite the clear political motivation” of the investigation. The fact is that PP is regularly audited by the Department of Health and Human Services and is found to be in compliance with federal law. Richards asserts that PP “only uses taxpayer money to help low-income patients afford preventative health care and family-planning services.”

For 95 years, PP has provided healthcare worldwide. PP bills itself as a “commonsense approach to women’s health and well-being, based on respect for each individual’s right to make informed, independent decisions about health, sex, and family planning.” Yet Stearns and Komen want to tear it down because of politics. Sick. Richards went on to say that “at a time when American people need jobs, some members of Congress are instead misusing political power to go after health care access for the most vulnerable women in this country, and that’s a shame.”
It is indeed a shame. Sounds like Stearns wants to bury PP in paperwork. And the issue isn’t women’s breast health — and the potential to save lives from the vicious beast that is breast cancer — but Stearns’s anti-abortion stance. PP receives some $360 million a year from the federal government for women’s health services, and PP maintains that none of that money is used for abortions. Abortions account for only 3 percent of PP’s services, and they are paid for out of pocket by the patients. So what about the other 97 percent of PP’s services?

Yes, PP provides abortions. And yes, abortion is a terrible thing for any woman to face. And yes, it certainly is preferable to have healthy babies born into loving families with the means to care for that child. But in the real world, it doesn’t always work that way. For Stearns and Komen to abandon PP for one politically-motivated, emotionally-volatile issue is cowardly. PP is about more than birth control. Way more. I sure wish Stearns could see that.

Komen insists that the decision to give PP the shaft was not political. Baloney. According to The New York Times, Komen called its break with Planned Parenthood “regrettable,” but added that “we must continue to evolve to best meet the needs of the women we serve and most fully advance our mission.”

AND WHAT EXACTLY IS THAT MISSION, KOMEN???

Pardon the shouting. I have very little patience for bullshit.

If Komen really wanted to meet the needs of the women it serves, it would continue funding PP and the important work done by PP affiliates all over this country. And if Komen really wanted to break from PP because of the abortion issue, just come out with it. I’d have a lot more respect for the organization if it was honest. But it’s not, and PP–along with the women under its umbrella — will suffer because of it. Women who can ill afford more suffering. To wit, if a couple, such as the one I am a part of, with 4 college degrees between them and a good-paying job with comprehensive health-care benefits struggles to meet the demands of a breast cancer diagnosis, what hope does a single woman have? Or a married woman who happens to be low-income? Or inadequately educated? That’s where PP comes in, and does a tremendous service to women facing a breast cancer diagnosis.

As stated on its website, this move means that “at immediate risk are low-income women, many located in rural and underserved communities, served by 19 Planned Parenthood programs funded by the Komen Foundation. This funding has enabled designated Planned Parenthood health centers to provide women with breast health education, screenings, and referrals for mammograms — lifesaving care for women where Planned Parenthood is their only source of health care.”

Both Stearns and Komen are being sharply criticized for this bone-headed move. Stearn’s peers are fuming, and Komen is taking a beating in the social media outlets. Reps. Henry Waxman of California and Diana DeGette of Colorado joined forces and  wrote a letter to Stearns expressing their opposition to his investigation, which they say is “unwarranted” and “designed to harass and shut down an organization simply because Republicans disagree with the work that it does.”

“We are aware of no predicate that would justify this sweeping and invasive request to Planned Parenthood,” Waxman and DeGette wrote in the letter. “It would be an abuse of the oversight process if you are now using the Committee’s investigative powers to harass Planned Parenthood again. Your fervent ideological opposition to Planned Parenthood does not justify launching this intrusive investigation.”

There is a call for Stearns to reconsider the investigation and find more productive ways to use the subcommittee’s resources, such as examining private health insurers who are under-reporting drug manufacturer rebates, or re-examining food safety.

Senator Barbara Boxer and Representative Jackie Speier, both of California, criticized Stearns and revoked their support for Komen yesterday. Boxer said, “I was perplexed and troubled to see the decision by Susan G. Komen for the Cure to cut off funding for life-saving breast cancer screenings through Planned Parenthood because of a political witch hunt by House Republicans. I truly hope that they will reconsider this decision and put the needs of women first.” Speier added her opinion on the House floor, saying, “I have been a big booster of the Susan G. Komen organization, but not anymore.”  One of Komen’s own affiliates withdrew its support as well. The Connecticut affiliate of Susan G. Komen for the Cure said in a statement on Wednesday that it “shares” people’s frustration over the decision and that it will continue funding Planned Parenthood of New England. Yeah! Rock on!

Komen and Stearns and their ilk need to hear the message loud and clear that regardless of one’s position on abortion, it is wrong to politicize women’s health. To politicize low-income and underserved women’s health is even more egregious. Check out this Polipulse poll of Komen’s decision to abandon PP.

The vast majority of people who are talking about this issue online think it’s wrong, and Stearns and Komen need to hear that. Ironically, since Komen severed ties with PP, money has been pouring in to PP.  Fellow Texans Lee & Amy Fikes donated $250,000 to PP for a “Breast Health Emergency Fund,” and the hope is that donations to PP will match or surpass the roughly $680,000 it received from Komen in 2011. Keep hope alive, because by yesterday afternoon, PP announced that it had received $400,000 from some 6,000 individual donors since Komen left. PP spokesperson Tait Sye issued this statement: “Politics should not get in the way of women’s health, and people respond powerfully when they see politics interfering with women’s health. The donations send a message to stand up to bullying and protect access to health care.”

Equally promising is that PP saw a spike in appointments for breast examinations yesterday. “The silver lining is that more people than ever are aware that Planned Parenthood provides breast exams, and we’re seeing more people calling us today to make an appointment,” Sye said.
So there, Komen. Take that, Stearns.
If you too are sickened by organizations and politicians interfering with women’s health, say so. Demand better. Click here to sign the open letter in support of PP. It costs nothing but makes a statement. Click here to take it a step further and donate to PP. Click here to tell Cliff Stearns he’s way off base with his underhanded, dishonest investigation. If that letter is worded too strongly for your taste, write your own and send it here, straight to Stearns’s homepage. Click here to send a message to Komen.

Motherless daughters

Posted: January 31, 2012 | Author: | Filed under: breast cancer | Tags: , , , , | 11 Comments

After my mom died, a friend gave me a book called Motherless Daughters by Hope Edelman. It was several years — literally — before I was ready to read it. Not because I didn’t have time and not because my stack of books to read was long, but because the grief was still too raw. Too raw to read a book that is meant to help ease that grief. That’s pretty bad.

It’s true that time heals, though, and after a few years I was ready to delve into Edelman’s wisdom. While parts of the book were hard to read because they brought back a flood of memories and transported me back to the time of losing my mom, other parts reminded me that many other women were walking the same road, missing their moms every single day.

The single best thing I learned from losing my sweet mama is that no one can dictate another person’s grief. People grieve as differently as they live, and no one has the right to say “This is how it should be done.” There are no “shoulds” in the process of grieving, and if anyone suggests otherwise, walk the other way. You have my permission to be flat-out rude if need be.

I’m tickled and honored to again be a guest blogger on one of my all-time favorite blogs, Journeying Beyond Breast Cancer. I’ve never met Marie, the bloggess, in person, but don’t have to be in her presence to know that I like her, that she’s good people, as they say in my neck of the woods. Marie’s blog was one of the first BC blogs I found after being diagnosed and joining the pink ribbon club, and through her I’ve “met” many other BC bloggers whose words and experiences enrich my life on a regular basis.

I wrote this post for Marie a while back, at the behest of another BC blogger friend, Lauren, who had the amazing idea of having BC bloggers “stand in the gap” for Marie while she dealt with her beloved mother’s failing health. Blog posts came from far and wide, and while Marie no doubt felt loved and relieved, those of us in the gap felt honored and happy to help. It wasn’t until I embarked on this cancer “journey” that I truly understood how it feels to help someone in need. Sure, I’ve minded my friends’ kids while they ran errands, and I’ve delivered home-cooked meals to friends who’d had surgery or brought home new babies. But being on the receiving end of so much love, so many great meals, and such endless kindness was a whole ‘nother ball game.

Now that I’m on the other side of the cancer experience (knock wood), I’m even more motivated to lend a hand to those in need. Being featured on Marie’s wonderful blog is a thrill, but knowing I’ve lightened her load a bit is even better. And, after being home with sick kids for days on end with no end in sight, it made my day.

Cheers to Marie and Lauren and the other Nancy and every other woman out there navigating the world without her mom.

If you’re hankering for more, click here for my first guest post on JBBC, or here for my second one.

The most beautiful struggle

Posted: January 26, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , | 5 Comments

I came across this quote from Sigmund Freud and have been thinking about it for days:

“One day, in retrospect, the years of struggle will strike you as the most beautiful.”

Hmmmmm.

Gonna need to ponder that one a while longer

Of course this made me think of the cancer “journey.” At first blush, my instinct was to think, “If Freud said it, it must be true.” I’ve always equated Freud with absolutes, and if the granddaddy of psychotherapy believes it, so do I. Nothing like putting blind faith in a long-dead, much-maligned, and perhaps slightly insane Austrian guy, right?

I’m still on the fence about whether the “years of struggle” will become the most beautiful. I’m inclined to think not, but am reserving judgment.

My blind faith in all things Freud did get me to thinking, though, so I consulted the all-mighty Google to learn a little more about him. On a side note, I laughed out loud at one of the hits that turned up in my search of Freud: “Why Men Pull Away — 10 Ugly Mistakes Women Make That Ruin Their Chance at Relationships” by http://www.catchHimAndKeepHim.com. What in the world would Freud think of that??

Back to Freud.

Born in 1856 to poor Jewish parents in Pribor, Czechoslovakia, Freud was an outstanding student and graduated with honors. He originally planned to study philosophy but was drawn to med school after reading Goethe’s poem, “Hymn to Nature.” I shudder to think how different our world would be if Freud had not read that poem and gone on to study neurology and, more importantly, anesthesia. Freud was instrumental in using cocaine as an anesthesia, and while many patients died and providers became addicted, the way was paved for modern medicine to employ drugs during surgery. As one who has endured multiple procedures, with perhaps more to come, I’m grateful to Freud for his pioneering spirit. A world without Versed is one in which I do not wish to live.

Freud has many famous quotes, besides the one about the struggle being fondly remembered. This one caught my eye: “Dreams are often most profound when they seem the most crazy.” Anytime a psychiatrist talks about crazy dreams, I’ll listen. You know there’s a great story waiting to happen.

And this: “I have found little that is ‘good’ about human beings on the whole. In my experience most of them are trash, no matter whether they publicly subscribe to this or that ethical doctrine or to none at all. That is something that you cannot say aloud, or perhaps even think.”

Whoa. So the master of psychoanalysis, the guru of getting inside your head, thought that most people are trash. That is heavy stuff. Makes me rethink my instinct to believe all things Freud to be true. And makes me think that perhaps he was wrong about the years of struggle seeming the most beautiful. While there are many things to be gained from a struggle, and I myself have indeed learned a lot from my cancer “journey,” I think I would have been just fine without it, Dr Freud, thankyouverymuch.

Happy birthday?

Posted: January 25, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , | 5 Comments

Macy and I were watching Animal Planet (aren’t we always??) when this commercial came on. There’s a series of them, created by the American Cancer Society through the More Birthdays campaign. I like this campaign. I give it two thumbs up. The list of musicians who have participated is long — from Aaron Neville to Weezer, with plenty of variety in between. Even my personal fave, Jack Johnson, got involved.

According to the ACS:

“We believe every birthday you celebrate is a victory. Another year that cancer has not prevailed. Your birthday means everything to us. That’s why we’re dedicated to creating a world with less cancer and more birthdays. Thanks in part to our work, 11 million cancer survivors will celebrate another birthday this year. But we can’t stop there. With your help, we can create a world with even more celebrations, more laughter, and more birthdays for all.”

morebirthdays.com

Macy was puzzled by the campaign, which surprised me. Cancer has been a part of her life for most of her life — my mom was sick during Macy’s preschool years, then we had several “normal” years before I was diagnosed. Kids whose parents have cancer grow up fast — they face the ugly realities of illness, fear, uncertainty, hospitalizations, treatments, doctors’ appointments, and death.

My girl didn’t quite get the point of the campaign for more birthdays. I would have guessed just the opposite — that because she’d witnessed my cancer “journey” firsthand, she’d understand exactly what the ad meant. I guess it’s a good thing that my kid doesn’t associate my cancer with death and, by extension, with no more birthdays. It’s a slippery slope when dealing with young kiddos and disease. On one hand, I’ve tried to be open and honest about my “journey” with my kids, but on the other hand, I sure don’t want to plant the seed that makes them realize that, hey, wait — people die from this, so Mom could too.

What’s the right answer to the “how much is too much info” question? I haven’t the faintest idea. There’s so much about the cancer “journey” that lacks a definite answer. Come to think of it, there’s so much in parenting that lacks a definite answer. I’m sure there are a million and one books on amazon.com about the best way to talk to kids about cancer. I was way too busy upon diagnosis, though, to order any, much less read them. Having cancer is a full-time job, as is raising young kids. So I never found the right answer, and decided to just wing it. So far so good, as evidenced by the fact that my favorite girl doesn’t understand the campaign for more birthdays.

 

Cupcakes

Posted: January 23, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , | 15 Comments

No, this post isn’t really about cupcakes. Sorry. It’s about a funny shirt and stupid people.

I wore this shirt to the gym on Friday and then to run errands afterward. I meant to write about it then but was busy being the hostess with the mostess and am just now getting to it. Anyhoo, the shirt:

My friend Jodie sent it to me in the midst of my cancer “journey” and I howled with laughter. I wore it proudly after my mastectomy and before reconstruction, when my chest was flat as a board and very conducive to easy reading. I wear it proudly now after reconstruction, and will continue washing it on delicate and hanging it to dry in hopes of prolonging its life.

I usually get a comment or a sly smile from my fellow gym rats when I wear this shirt, but Friday I encountered two older ladies who didn’t appreciate the humor. The first one looked at me and tsk-tsked then told her friend how inappropriate she thought it was to make light of such a serious situation. She wondered aloud why our club doesn’t have a strict dress code.

Really??

You know me, I couldn’t let it go. Just couldn’t turn the other cheek and walk away.

I said excuse me, I couldn’t help but overhear (not that she was trying to be discreet in her criticisms) what you said about my shirt. I’m curious what exactly about it bugs you? She replied that she thinks it’s disrespectful for people to be flippant when they know nothing of the disease.

Oh boy.

I pointed out as nicely as I could (which probably wasn’t really all that nice) that I do indeed know something of “the disease.” She looked a bit surprised when I told her that I myself had breast cancer and am proud to be a survivor. I like the fact that people in the gym who don’t know me see my shirt and realize that cancer survivors can get on with life. I’ve had several people tell me that seeing me at the gym is inspiring to them, and on days when they’re struggling through their workout, they see me hitting it hard and decide to step it up a bit. After all, if the girl who had cancer can do it, they can, too.

But Judgemental Lady didn’t see it that way, apparently. See, she thought there’s no way I could be a cancer survivor because I’m too young. Women my age don’t get breast cancer, she says.

Let’s just say that she got a bit more education on that topic than she might have wanted.

I informed her and her friend that according to the American Cancer Society, nearly 20,000 breast cancer diagnoses a year are delivered to women younger than 45. That my breast surgeon has performed bilateral mastectomies on women younger than me. That my OB-GYN — who diagnosed me — recently diagnosed a women who is 27 years old. That young women with breast cancer fight a different battle than their older counterparts, for many reasons: facing more aggressive cancers and lower survival rates, (hopefully) battling the beast for more years than we’ve been alive, a lack of effective screening for women under 40, being underrepresented in research, having young kids at home, dealing with fertility issues, enduring early menopause, and struggling with serious body-image issues being among the more egregious.

No charge for the lesson, lady.

I set her straight and went on about my business. While waiting in line to return a coat that was too small for Piper (yes, little piggies do need a coat, even in Houston), a lady told me she liked my shirt.

Oh, really? How refreshing.

She went on to ask if it was a fundraiser for cancer. I had to think about that for a minute, and while I was trying to figure out what in the sam hell she meant, she started blabbing about a bake sale her kid’s school did for cancer. She thought my shirt referred to a bake sale! Now that’s a new one.

I explained that no, it’s not a fundraiser and it’s not a bake sale, that I myself had breast cancer. She still looked puzzled, so I spelled it out for her: “cupcakes” is a euphemism for breasts, and mine “licked cancer” by defeating the wily beast that was laying siege to my body. I guess technically my cupcakes didn’t lick cancer, but my surgeons did by amputating said cupcakes, but that seemed like more detail than the conversation warranted. She smiled at me in the manner one would smile at a deranged lunatic on the loose and scooched her shopping cart back a little bit.

I don’t care what the general public thinks; I love my shirt and will continue to wear it proudly. Judgemental old ladies and bake-sale zealots be damned.

 

Happy New Year!

Posted: January 3, 2012 | Author: | Filed under: breast cancer, kids, pets, tennis | Tags: , , , , , , , , , , | 8 Comments

 

“We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called opportunity and the first chapter is New Year’s Day.” — Edith Lovejoy Pierce

I’m a couple of days late, but the sentiment stands.

Welcome, 2012. I have every hope that this year will be waaaaaaaaay better than the last. 2011 was a humdinger, and not in a good way. 2012 is bound to be better, just by default.

gocomics.com

I’m not one for making resolutions as a new year dawns, but I do like to set goals. I’ll leave things like world peace and matching-making for those pathetic Kardashian sisters to a higher power; I’m motivated, but am not a miracle worker. Without further ado, my goals for the coming year, in no apparent order:

drink more champagne (I’m sure some are wondering, is that even possible??)

improve my forehand (more depth and more angles, and quit hitting right to the person on the other side of the net. Sheesh.)

make my own salad dressing (no more Newman’s Own for me, although I want to figure out how to get  his face on my bottle of dressing)

get my kids to eat more like Piper and less like John Belushi in Animal House, John Candy, and Chris Farley

take my calcium supplement (every day, no excuses, just do it)

That’s it. A simple list.

Happy New Year!

 

 

 

Another BC casualty

Posted: December 20, 2011 | Author: | Filed under: breast cancer | Tags: , , , , | 8 Comments

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You  may not know her name, or you may know her only from her pageant past. Now you’ll know her as yet another victim of the breast cancer beast. Eva Ekvall, former Miss Venezuela, died Saturday. She was 28 years old.

28 years old.

She was diagnosed shortly after giving birth to her daughter, who is now two years old. Way too young to lose her mama. As far as I can tell, one is always too young to lose one’s mama.

guardian.co.uk

Ekvall died Saturday at a hospital here in Houston. Another casualty of the breast cancer beast.

Her death is garnering attention because she was famous, and because she was so young. She was crowned Miss Venezuela when she was 17 years old, then clinched the third runner-up title in the Miss Universe pageant in 2001. After that, she worked as a model, actress and TV news anchor. All of those accomplishments are notable and interesting, and no doubt  her physical beauty propelled her to success. What impresses me most of all, however, has nothing to do with her work on TV or runways but her work as an author.

Fuera de Foco (“Out of Focus”) chronicles her struggle with cancer, and she included some graphic photos of herself during her cancer battle. Of the book she had said, “I needed to send the message of the need for cancer prevention.” She gets extra kudos from me for focusing on prevention as well as baring herself in less-than-flattering photos. In a culture some would say is obsessed with looks, she was brave to show the real side of cancer. The ugly truth.

amazon.com

For Ekvall to appear on the cover of the book with a shorn head must have been a scary thing for a woman who was raised in the pageant world and who made her living based on her appearance. She wasn’t shy about showing photos of herself as she was during treatment. “I hate to see photos in which I come out ugly. But you know what? Nobody ever said cancer is pretty or that I should look like Miss Venezuela when I have cancer.”

guardian.co.uk

Nobody ever said cancer is pretty. Amen to that.

Anyone who’s endured the cancer “journey” or has cared for someone on the “journey” will find the above photo familiar. For Ekvall, the 8-month regime of chemotherapy, radiation, and then a mastectomy left her exhausted, bald, and puffy from steroids. Of this stage of her life, she said, “It’s painful to look at yourself in the mirror. Your face gets swollen. You lose every single hair in your body – your eyebrows, your eyelashes. You become some weird animal or something, you don’t recognise yourself. That was scary. Especially because my job has to do with my looks. I had to look decent and not appear sick.”

Such a tremendous burden: the pressure to look good and look  healthy. To paint a rosy picture of a situation that is anything but pretty. I am in awe of her courage and honesty.

When presented with the idea for the book and photos by Venezuelan photographer Roberto Mata, she was hesitant. “In the beginning I wasn’t sure if I looked good or not. Then I realised that wasn’t the point. I wasn’t supposed to look good, I had cancer. The pictures were very shocking because nobody had ever seen me that way. Nobody had seen me bald, without makeup.”

She had hoped that her book would help shatter the existing idea of female beauty and wanted to “move  breasts from the realm of aesthetics to that of health and disease.” Working toward awareness and away from shame and taboo was important to her. She spoke of the irony between a country known for plastic surgery and its resistance to breast cancer awareness: “There’s a huge taboo around breast cancer. But in this country [Venezuela] people get their boobs done every day so I don’t understand how breast cancer can be a problem when everybody’s showing their breasts.” The fact that Venezuelan women “rushed to get cosmetic surgery yet needed encouragement to get mammograms” confounded her, and she set out to change that.
Ekvall was honest about her anger toward her cancer. “I was very angry [when diagnosed] because I should have known. My aunt had breast cancer twice and my grandmother died from breast cancer. And I just let time go.When I got sick and knew my breasts were sick it’s like I didn’t want them any more. I wasn’t fond of them. I was angry at them. So getting rid of them, even though it was horrible because I had all these scars, meant I felt better.”She went on to say that “getting a mastectomy is not what I’d planned for my life, it’s not what I wanted to happen,” and that the fear of recurrence would always rule. “That’s the fear you live with for the rest of your life after you get cancer. But I made sure I told my story.”

I’m so glad she did tell her story.

R.I.P., Eva.

 

 

Giuliana Rancic

Posted: December 15, 2011 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , , | 19 Comments

I wasn’t planning on writing about Giuliana Rancic’s breast cancer diagnosis in October or her decision to have a double lumpectomy or her announcement  that her double lumpectomy has morphed into a double mastectomy. Much has been written about it, and she’s done the talk-show circuit, and I didn’t feel the need to comment on the latest celeb to begin a cancer “journey.” However, the more I read about her story, the more compelled I am to comment.

First, when her cover issue of People magazine hit the newsstands, it nearly caused me to have a heart attack. I was mindlessly unloading my loot from my shopping cart and putting it on the conveyor belt when I caught a glimpse of this:

I didn’t notice the photo or her name, but was drawn in by the bold yellow headline and wondered, who’s that and what’s she got that is serious enough that she has to fight for her life??? Imagine my shock when I read the fine print and realized that it’s Giuliana Rancic and she’s got what I had — breast cancer. After the shock wore off, I thought I’d better see how serious her diagnosis is; after all, if she’s fighting for her life, it must be bad. I’m thinking stage 4 with mets everywhere.

The article in People, titled “The Fight of My Life,” speaks of her “devastating cancer diagnosis.” I’m thinking this is really bad.

As I read on, though, I learned that her BC was caught early and had not spread.

Whew!

So does this mean that early-stage, non-metastatic BC qualifies one to be deemed “fighting for one’s life”? If that’s the case, what does that mean for women whose BC is not early stage and has spread?

This kind of overwrought journalism really bugs me. I know that People has to sell mags, but good grief, how about a little truth in advertising? The cover story of  “I’M FIGHTING FOR MY LIFE” in big, bold letters nearly caused me to stroke out, and left me thinking I really underplayed my BC story. My cancer was in both breasts, not just one, and I never declared that I was fighting for my life. I’m thinking I seriously mishandled this.

I’m certainly not one to kick a sister when she’s down. That’s not my intent at all. I wish her the best; I truly do. Cancer is a terrible thing, no matter what age or what stage one is when diagnosed, and I certainly don’t mean to give Rancic grief — she’s enduring enough of that as is. However, I do wonder about some of the comments she’s made. I was hoping they were taken out of context, but ….

She said that the double lumpectomy didn’t get all the cancer so she was moving forward with a bilateral mastectomy, and I totally support her saying that deciding to have a mastectomy “was not an easy decision but it was the best decision for me.” Agreed. But when she went on to say  “Not only can it [mastectomy] save your life, but you can come out feeling healthier and with a positive self-image”

Really?

Ladies, raise your hand if your bilateral mastectomy left you feeling healthier and with a positive self-image.

Come on, show of hands.

Anyone? Anyone?

Maybe I’m the odd girl out, but the process of lopping off my breasts certainly didn’t make me feel that way, and 18 months later, it still hasn’t. I’ve talked to more than a few BC gals, and never once has the topic of feeling healthier or having a better self-image come up. Not once.

On The Wendy Williams Show the other day, Rancic spoke openly about her surgery and how she thinks it will affect her: “Listen, I love my girls, but I’m gonna feel more like a woman when this is all done.”

“I’ll be able to say that I survived something major and it’s made me stronger. I will be a better woman for it.”

 Oh boy. More like a woman and a better woman. Yikes.

I hope she’s not setting herself up for a very big, very traumatic fall.

Rancic went on to say that “scars are beautiful. I think scars tell a story.”

Yep, there’s a story there all right. Millions of women can attest to that. There is most definitely a story there. Hopefully not a horror story.

I wonder if she’s seen any images from The SCAR Project. I was blown away by photographer David Jay’s shots the first time I saw them, and receiving The SCAR Project book is one of the best gifts ever (thank you, Trevor). The women are beautiful, and their strength and kick-assed-ness is beautiful.  The scars, not so much.

thescarproject.org

thescarproject.org

thescarproject.org

thescarproject.org

Giuliana Rancic speculated of her breasts after reconstruction: “They might come out looking even hotter. You gotta have fun with this. We find the humor in everything. Bill helped pick ’em out. I’m like, ‘Bill, that big? Really?'”

They might come out looking even hotter.

I’m gonna have to linger on that idea for a minute.

And when I’m done, I will contemplate the damage that occurs when people say things that imply that facing breast cancer is a tidy event that requires surgery and treatment then fast-forward on to the happily ever after. While the happily ever after certainly can, and does, happen, I think it’s misleading to say that BC is something you deal with and move on. The idea that after cancer comes transcendence is flawed. The idea that all you have to do is wrap a big pink ribbon around a cancer battle is flawed. The idea that everyone comes away from breast cancer a better, stronger person is flawed. It’s not that easy, it’s certainly not pretty, and it doesn’t always result in the kind of change you would consider positive.

In speaking of Rancic’s mastectomy, her husband Bill said, “Our goal is to be done with this by Christmastime and not look back. We’re taking the rear view mirror off the car and we’re not looking back, because we’re going to be done.” Well, considering she had the surgery two days ago, and is still in the hospital, I hope she’s “done” by Christmastime. It’s good to have goals.

Maybe the whole cancer thing is still too fresh for me, too raw, but the idea of not looking back is weird and foreign and borderline incomprehensible. Maybe there’s a pair of magic “don’t look back” glasses that gets passed out upon diagnosis, and I missed out on that. I can see how that might happen as I’m always in a hurry and might have scooted out of Dr D’s office before anyone had a chance to give me the “don’t look back” glasses. Or perhaps I was supposed to get them from my oncologist, but was so freaked out by the fact that I have an oncologist that I ran out of his office before I got the magic glasses. Maybe Giuliana got her glasses in advance; one of the perks of being a celeb and having cancer. Personally, I don’t know how one can experience a cancer “journey” and not look back. I hope it works out for her.

Giuliana is definitely on the fast-track. She says, “I hope for a full recovery by New Year’s Eve. We’re planning to be in Times Square!”

If any of y’all are going to be in Times Square for New Year’s Eve, look out for Giuliana. And be sure you don’t bump into her. Those mastectomy scars and JP drain holes take a while to heal.

What I know for sure

Posted: December 14, 2011 | Author: | Filed under: breast cancer | Tags: , , , , , | 5 Comments

I take Oprah’s magazine, O. My friends who aren’t from around here laugh when I say that I “take” a magazine. I never knew that was a southern way of saying I have a subscription. Learn something every day, even if it is from Yankees (kidding, of course — I love my Yankee friends. Just hate the team the Yankees).

Now that we’ve cleared that up, back to the magazine. That I take.

In every issue, the last page is Oprah’s column on what she knows for sure. It’s the first place I turn to each month when the magazine appears in my mailbox. Then I go straight to the food section, followed by the book recommendations. I can’t say that I’ve ever made a recipe from O magazine, but the food stylists and photographers do an outstanding job. I have definitely taken book recommendations and have not been disappointed.

The What I Know for Sure column was spawned by Gene Siskel asking Oprah what she knows for sure. On the surface, it seems like a simple question, yet it had Oprah “flustered and stuttering and unable to come up with an answer.” She explains it: “The late film critic Gene Siskel used to ask in his celebrity interviews, ‘What do you know for sure?’ The first time he asked me this question, it threw me. Since then the question has become a way of taking stock of my life—hence the monthly column, in answer to Gene.”

Siskel inspired her to find out what she knows for sure, and every month she shares what she’s discovered. Say what you will about Oprah — some people think she walks on water while others can’t stand the sound of her voice — when she talks, people listen. Sometimes she gets a little too “out there” for me, but for the most part, I agree with what she says and usually come away from her What I Know for Sure column thinking, “Yeah! What she said.”

Because it’s the holiday season and I’m in the giving mood (and because I’m still waiting for the answer to the question of my next surgery to be handed down from the mighty GYN oncology tribunal at MD Anderson), I give you Oprah’s Top 20 List of Things She Knows for Sure.

1. What you put out comes back all the time, no matter what. (This is my creed.) [Oprah’s creed, not mine. Although it is a good creed.]

2. You define your own life. Don’t let other people write your script.

3. Whatever someone did to you in the past has no power over the present. Only you give it power.

4. When people show you who they are, believe them the first time. (A lesson from Maya Angelou.)

5. Worrying is wasted time. Use the same energy for doing something about whatever worries you.

6. What you believe has more power than what you dream or wish or hope for. You become what you believe.

7. If the only prayer you ever say is thank you, that will be enough. (From the German theologian and humanist Meister Eckhart.)

8. The happiness you feel is in direct proportion to the love you give.

9. Failure is a signpost to turn you in another direction.

10. If you make a choice that goes against what everyone else thinks, the world will not fall apart.

11. Trust your instincts. Intuition doesn’t lie.

12. Love yourself and then learn to extend that love to others in every encounter.

13. Let passion drive your profession.

14. Find a way to get paid for doing what you love. Then every paycheck will be a bonus.

15. Love doesn’t hurt. It feels really good.

16. Every day brings a chance to start over.

17. Being a mother is the hardest job on earth. Women everywhere must declare it so.

18. Doubt means don’t. Don’t move. Don’t answer. Don’t rush forward.

19. When you don’t know what to do, get still. The answer will come.

20. “Trouble don’t last always.” (A line from a Negro spiritual, which calls to mind another favorite: This, too, shall pass.)

My favorites are 2, 5, 10, and 17. Because I’m a little on the OCD side, and because it’s the biggest storyline in my life to date, I equate most of Oprah’s list to cancer. Well, numbers 2 and 5 have been my style from the get-go, way before cancer so rudely interrupted my otherwise fabulous life. It’s just the way I was made and it’s how I roll. I don’t know how it happened or if it is just imprinted into my DNA, but I don’t give a fig what other people think. Sure, I want the general impression of me to be one that’s positive, but when everyone is wearing skinny jeans, I’m gonna pull out my boot-cuts. My swim-against-the-current ways predate my diagnosis, for sure, but those trend-bucking ways have defined my cancer “journey.” From eschewing lumpectomy to questioning the doctors to rejecting that status quo and doing my own research, I’ve bucked the system and made choices based on what I truly believed. When a Very Important Person took offense with this little blog, I said it’s my blog and I’ll write what I want to. Don’t like it? Don’t read it. I will be fair and will endeavor to be balanced, but I will tell it like it is.

Number 5 has been a harder row to hoe than numbers 2 and 10. I’m a worrier, and that too is stamped into my DNA. While I make a real effort to not let the worry overtake my more rational side, it is definitely an effort. My good friend and health-care sherpa Amy Hoover has a saying: “Don’t borrow trouble.” That saying has become my mantra in this cancer “journey,” even if it is quite the effort to leave the borrrowing behind.

I’ve never loved Oprah more than when she declared to millions of people around the globe that motherhood is the hardest job ever. For someone who doesn’t have children to get this is quite gratifying. I adore my kiddos and feel immensely grateful to be raising them but it is a hard job. Not hard in the sense that it takes a lot of education or training, but hard in that you never know if all your hard work will pay off. You can do all the right things as a mother and still end up with kids who lose their way or thumb their noses at your values or vote Republican. It happens. There are plenty of how-to books on parenting, but none of them can guarantee the outcome you seek. Sorta like with cancer.

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