I'm Just Sayin'

The Komen Foundation is engaged in the doo-doo dance. You know, when you step in a pile of dog poop and then you scuff around trying to get the crap off your shoes. It ain’t pretty. It’s almost impossible to do it gracefully. And if you do manage to clean your shoes, you’re still left with a pile of shit in your yard.

That’s what I thought when I studied today’s statement, in which Komen supposedly reversed its decision to de-fund Planned Parenthood, and apologized for casting doubt on its commitment.

When I first read the statement, I felt triumphant. The angry and indignant outcry from hundreds of thousands of former Komen supporters had been heard! But then I read it again, and got a whiff of something stinky. After reading it several times, and mulling it over for a few hours, I’ve come to the conclusion that Komen still has poop on its shoes, and it might never get its yard cleaned up.

Today’s statement was very carefully worded to make me feel like I’d won. And, feeling warm and fuzzy with victory, I’d be more likely to forgive and forget. And in the spirit of forgiveness, perhaps I would reconsider my vow to de-fund Komen. After all, they changed their minds, so shouldn’t I change mine? Shouldn’t we all just get back to the business at hand – protecting women’s health?

In reality, the statement didn’t offer much. It said Komen would “continue to fund existing grants, including those of Planned Parenthood …” But they never said they would take money away from Planned Parenthood, just that they would not approve future grants. Stinky.

In today’s statement, Komen also pledged to “preserve their eligibility to apply for future grants.” Well, of course anyone can apply for a grant, but that doesn’t mean Komen would actually consider the application. Smelly.

And while Komen has repeatedly denied that its decision to de-fund Planned Parenthood was political, today’s statement clearly pointed the political finger at those who cried foul. “We urge everyone who has participated in this conversation across the country over the last few days to help us move past this issue. We do not want our mission marred or affected by politics - anyone's politics.” We weren’t playing politics with women’s health, but if you don’t return to the fold, your politics is getting in the way of our mission. Reeking.

Perhaps I am being too harsh. Maybe I am too bitter to see this objectively. Could be. But I won’t apologize for that. It’s too personal. The betrayal is still too fresh. And Komen has a long way to go to restore my faith and regain my trust. And in the meantime, I have found alternatives in my personal fight against breast cancer.

I have discovered Forsyth Medical Center Foundation. Donations to this organization can be earmarked for breast cancer screening and treatment at Forsyth Medical Center facilities for uninsured women in nine North Carolina counties. Through its Women’s Council, the foundation addresses a variety of women’s health issues, and it sponsors a mobile mammogram unit to provide on-the-spot screenings in remote and underserved areas. Donors can even request their gift be used specifically by WomanWise, the breast and cervical cancer prevention program administered by Forsyth County Department of Public Health, which has provided me with free mammograms for the past three years that I have been uninsured.

Each and every penny donated to the foundation goes directly to patient care, and there are volunteer opportunities for those with more time than money. For more information go to http://www.forsythmedicalcenter.org/ and click “ways to give.”

I’ve also been reacquainted with the Breast Cancer Research Foundation. Since 1936, BCRF has provided critical funding for research at leading medical centers worldwide, including Harvard, Yale, Duke, Johns Hopkins, the Mayo Clinic, Washington University in St. Louis, Stanford, UCLA, Oxford, and the University of London. More than 90 cents of every dollar donated goes directly to breast cancer research and awareness programs. For more information, see http://www.bcrfcure.org/index.html.

There is also the National Breast Cancer Foundation, created by a breast cancer survivor to promote early detection through screening, and to provide free mammograms to women in need. NBCF is highly rated as a charitable organization and has an impressive list of corporate and celebrity partners. See http://www.nationalbreastcancer.org/default.aspx.

Information about these organizations is provided as a resource, and is not an endorsement. Haven’t we all learned to do our homework? I am sure there are many worthy organizations that are dedicated to breast cancer awareness and prevention and are working to find a cure. I hope to pass along information as I find it, and I encourage my allies in this fight to share their information with me as well.

The Breast Cancer Research Foundation estimates that in the U.S. a woman dies of breast cancer roughly every 13 minutes. That means that more than 300 women have died in America while the Komen Foundation played politics with their lives.

That stinks. I’m just sayin.

I’ve had an emotional day. Scratch that. Ten days.

On January 23 I heard the words I’ve dreaded for so long …”your recent mammogram showed an irregularity…” My heart fell into my stomach, and then my stomach hit the floor. I have a sister who died of breast cancer. I have another sister who survived it. My mother died of brain cancer. One of my brothers just finished treatment for prostate cancer. Yeah, I feel vulnerable.

I’ve pretty much gone about my business for the past week and a half. I told only a few people. I continued to work my three jobs. I gathered up my talismans (a rosary crucifix that my high school friend and pseudo-cousin Michael gave me the night before I left for college and he left for Army basic training, a jade dragon given to me by a grateful immigrant parent for helping her daughter get settled into college half a continent away from home, and the guardian angel prayer card that I placed at my sister’s bedside when she was dying). And I came home from work and fell apart every night. I don’t mention all of this so you will feel sorry for me. I want you to know how deeply personal this is.

So today was the day I went for additional mammography screening. And it was also the day we learned that Komen for the Cure was cutting off funding for Planned Parenthood. Actually I heard about it last night on Facebook. I’m grateful for the distraction. Feelings of hurt, disappointment, sadness and betrayal were a welcome change from worry. Yeah, that’s the kind of week it’s been.

Not to draw this out any longer: I am fine. Today’s more detailed tests showed nothing irregular. Imagine my relief. Imagine my exhaustion. Imagine my gratitude and anger. It’s been a roller coaster kind of day.

A bit of self-disclosure. When my state job was eliminated in 2008, I lost my health insurance. My last several mammograms have been paid for by a local program called Woman Wise, which receives some of its funding from the Komen foundation. That’s not easy to admit, but it is easier to live with because I have been an ardent supporter of Komen. I’ve participated in its Race for the Cure events for several years, in three states. I coordinated a benefit event for Komen, and raised enough to fund several mammograms for uninsured women like me. I bought yogurt with pink lids and went online to register my purchases so Komen would get credit. I bought all kinds of “pink” products to support Komen, both financially and emotionally.

No more.

If you have spent the day under a rock, perhaps you are not aware that Komen for the Cure has chosen to de-fund Planned Parenthood, because Planned Parenthood spends a miniscule amount of its resources on abortion. Yeah, the organization founded on a promise to end death by cancer has turned its back on an organization that provides life-saving cancer screenings, to prove that it is “pro-life.”

I feel betrayed. I feel angry. I feel sad. And I am a writer. When I feel, I write.

I wrote an email to the executive director of the local Komen affiliate. Another bit of self-disclosure: I once applied for a job there, as an event planner. That’s how much I supported Komen. I wanted to give them my time, in addition to my money and my sweat. So I’ve met this woman, and I respect and admire her. Today in my email I told her I could no longer support her organization, and I vowed to contact her corporate sponsors to withdraw my support from them. To her credit, she responded very promptly. She’s in crisis-control mode, like hundreds of her counterparts across the country, a dance thrust upon them by a national executive who apparently has chosen politics over women’s health. I know nothing of the local executive’s political leanings, but I have no doubt of her commitment to the cause. I would not be in her shoes for any amount of money.

She wanted me to know that currently in our area, Planned Parenthood is not funded by Komen, because Planned Parenthood did not apply for a Komen grant. And she sent me an impressive list of 16 regional organizations and projects that are funded by Komen. She informed me that 75 percent of funds raised locally remain in the area to provide live-saving services for local women like me.

I admire all of that. I do. But I cannot accept that one red cent of my hard-earned money, or one drop of my sweat, goes to support the national organization that caved to political pressure from “pro-lifers” who demonstrate no respect for MY life, or the lives of hundreds of thousands of uninsured women.

So I’m on a mission. My mission is to inform anyone who will listen that Komen is not the only game in town when it comes to breast cancer awareness and prevention. There are other organizations that fund mammograms for uninsured and low-income women. There are other efforts that promote breast health awareness. Subsequent posts will list them. I will also identify Komen corporate sponsors in case you want to join me in voicing your disapproval.

If you choose to continue supporting Komen, I respect that. I am sure the foundation will continue to benefit some women. But as long as Komen continues its hateful and destructive policy regarding Planned Parenthood, I will continue to speak out against them in any way I can.

Like the founder of Komen, I made a promise to my dying sister.

Right around this time last year, I was headed out to Missouri to check on my sister Rhoda, who was fighting metastatic breast cancer, and had just been hospitalized. Little did I realize that I was headed to her death bed, or that I had already had the last conversation I would ever have with her. I have written before how I spent this last week of her life with Rhoda, but will never know if she knew I was there. Her cancer had spread to her brain, and caused her liver to shut down. She was a shell of herself. Her body was barely recognizable, wrecked by chemotherapy -- devoid of hair, muscles and skin slack from malnutrition. Her spirit, normally boisterous, was not in evidence. No husky chortle, not smart ass remarks, no baudy humor.

For a week I begged her to talk to me. Tell me a joke. Give me an order. Just say my name. Smile. Laugh at my stupid jokes. Tell me to shut the hell up. But she didn’t do any of that. She couldn’t – or wouldn’t. Basically, she had nothing left to give.

Toward the end, when we knew it WAS the end, we started calling people. The family rallied, driving in from across Missouri, as well as Alabama, North Carolina, and Texas. And friends arrived. One cleaned out her checking account to buy enough gas to get there from Houston. Two others bought costly last-minute flights from Dallas. Another gave up a badly-needed work assignment and drove in from Tennessee. High school friends streamed in.

I’m not sure what everyone expected. Did they hope for conversation? Or recognition? If so, they must have been devastated. Still, they sat with her, sang to her, read to her, applied moisturizer to her parched skin, rubbed her back and held her hand. They brought flowers and cards, aromatherapy aides, silk butterflies and prayer cards and other talismans. Cousin Larry went to the beauty supply store in search of formaldehyde-free nail polish in the perfect shade of pink so she would die with pretty toes! (I am still unclear if they talked him into the frequent buyer discount card.) All of these people dropped everything just to be with her one more time.

At the time, I was touched. Hell, I was blown away, but I couldn’t have said why. Amidst my haze of emotional exhaustion, I could not have identified exactly what I felt about that bedside vigil. A year later, it’s all a little more clear. I felt wonder, and uncertainty. And now, commitment and resolve.

How wondrous that my sister inspired so much love and devotion, such friendship and generosity! How uncertain about the state of my own life, and loves and friendships. Who would be there at my bedside? What would they bring, and what would they say to me, and how would they feel? In the course of a year, I’ve thought about those questions, and I have a pretty good picture. I know who will be there and what they might bring (pie, baseball memorabilia, wine, stuffed animals, music by James Taylor and Janis Joplin, lavender candles and yellow roses). I think they will tell me stories about the good times, and laugh through their tears, and remember what a pain in the ass I could be. More than one of them will probably say, “Yeah, she really did say that out loud.” Maybe they’ll remember a meal I cooked, or how they helped me move, or beat me in Scrabble, spades, darts or kick-the-can.

Yeah, I know who you are. And I’m grateful. I resolve to be a better friend, or sister, or aunt or cousin or whatever. I’m committed to using my time and talents and energies to pay it forward, serving those who have been here for me through thick and thin (I know, I know, I have never been thin). When you stop to compose that list of who will be there in the end, you get some perspective. Maybe I can forgive the stranger who cut me off in traffic or threw a cigarette butt out of their car window, or even my dumb ass ex-husband, or the stupid bitch who “eliminated my position” at work. Ok, maybe not. But at least I can spend less energy hating them. Maybe I can channel that emotion into affirming what my sister Rhoda taught me, from her death bed, when she couldn’t even say my name. She taught me one more lesson about life and love. She taught me to choose joy and positive abundance. I’m just sayin …

“Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, martini in the other, body thoroughly used up, totally worn out and screaming "WOO- HOO what a ride!"

This is my favorite motto right now. I’ve seen it several places, attributed to everyone from a female kayaker in California to Maxine, the grouchy but loveable greeting card maven. Most recently, I saw it on the wall of my friend’s guest room. I had forgotten that we found the plaque in a shop on the Outer Banks of NC, during what began as the beach trip from hell. I won’t go into details, but let’s just say my friend and I fled a smelly, bug-infested DisComfort Inn for a much nicer (and cheaper) hotel a mile down the beach, with a salt-water pool and an outdoor bar with actual wait staff. Talk about skidding in sideways – we salvaged that vacation by the hair of our chinny-chinny-chins.

Speaking of hairy chins, I think I like this quote because it reminds me of my sister, Rhoda. She was five years older than me, and had survived menopause, hence the hairy chin comment. I said “was” because she passed away last May. And before you go all hater on me for talking about my dead sister’s hairy chin, let me assure you that Rhoda would have appreciated that humor, and I think she might have admired the segue.

Rhoda died at the age of 54 from metastatic breast cancer. I was there when she drew her last breath. I’d been there for nine days watching her sleep, trying to feed her Jell-O and chocolate pudding, putting moisturizer on her back, and balm on her lips. Her cancer had spread to her brain, and her kidneys were shutting down. She was a shell of the person I had known. Her most recent round of chemo had claimed every strand of hair on her body. No eye lashes, no eyebrows, no whiskers on her chin. And her glorious mane of once-blond-but-lately-red hair – all gone. She’d been weak and nauseous for months, and her skin sagged. She had no muscle tone to speak of. Her skin was splotchy and her beautiful gray-blue eyes were mostly dull slate.

I talked to her a lot those nine days, and tried to convince her to talk back. If you knew Rhoda, you’d be amazed that anyone had to encourage her to talk. I don’t know if the brain tumor had affected her verbal ability, or if she was just too weak and tired. But she never did say my name. It was kind of like she was already gone.

But she was there, and she had some great medical care. There was a hot male nurse named Doug who checked her vitals and brought her meds. And a male physical therapist who picked her up in a big bear hug every day, trying to get her to stand or walk a few steps. If Rhoda had been all there, those guys never would have known what hit them. They’d still be talking about it. For the first few days, there was a nurse’s aide named Rhonda. We laughed because for her whole life, Rhoda had been called Rhonda, and the aide said she had been called Rhoda a lot.

It made me sad realizing those people did not know who they were dealing with. I regretted that I did not have a picture of Rhoda so I could illustrate who she was, who she had been. As hard as I tried, I would never be able to do her justice with my words. But I told a few of them some stories so they’d understand. I told them how I used to spy on her meetings of the Monkees fan club, whose members wore paper dresses and white ankle boots and danced the pony to “I’m a Believer.” I told them how she came to visit me in my co-ed college dorm, and within an hour was sitting on the lap of a guy from upstairs, sharing a bottle of Southern Comfort with another. I told them how she had this vast knowledge of popular music, and how I used to call her for help when I played Trivial Pursuit.

There was lots of stories I didn’t tell them, like how she taught me to roll my hair on orange juice cans for big, bouncy curls, or how she bought me my first box of tampons because mom thought only sanitary napkins were suitable for young girls. I didn’t explain her fixation with babies, or the fact that she saved a woman’s life not long ago. I didn’t tell them that she married the same man twice. Or that she had a medium who put her in touch with dead relatives and friends.

How impossible to capture Rhoda in words! She was irrepressible. Mischievous. Controlling. Stubborn. Whack-o-into-psychobabble. Funny. Smart. Beautiful. And loving. She really loved life. And she really lived.

I am coming to terms with the Rhoda that was in that hospital bed. I’m disappointed that she didn’t speak to me for those nine days, but I understand. I know that cancer might have claimed her hair and weakened her body, but it didn’t get the best of her. She had already lived the best of her, and lived it well. She did not leave much in the locker room, so to speak. I’m positive that she lay there in that bed, silently planning her last hurrah. Saving up for the finale, when she no doubt skidded into heaven sideways, chortling in her husky voice, “Hot damn! What a ride.”

In Rhoda’s case, she probably had a margarita in one hand and a Red Lobster garlic cheese biscuit in the other. I’m just sayin.