Put the "US" in BRA DAY USA!

The official, national BRA Day USA kick-off will be in New Orleans on October 17th (if you don’t know what I’m talking about, please see my September blog post). It would be so cool to see the press conference and especially the flash mob in the neutral ground on St. Charles Avenue! (If any of you are going, send me some photos/video to post.) I'll be in New Orleans in spirit, though I’ll be here in Minnesota. But that's okay. Women all over this country need to hear about breast reconstruction after mastectomy, and often the best place to advocate something is right where you live.

"Under Construction" by Pam Evgen

Obviously breast reconstruction awareness doesn’t begin and end on October 17th, any more than breast cancer awareness ends on the last day of October (fitting it’s Halloween, huh? Kind of an inadvertent, symbolic reminder that breast cancer is a scary proposition, despite it being dressed up in pink ribbons all month). But having the day does offer an opportunity to unite everyone in focusing on one thing at one time. There’s real power in that. Hopefully a woman somewhere who didn’t know she could regain her lost breast will hear BRA Day mentioned on the news or read a newspaper story, and it will start her thinking and asking questions. By year's end, she may have a whole new lease on life. Just what she needed to put the bounce back in her, um… step.

About a month ago, I happened upon some bra art. Yes, bra art. Google it. OMG! Who knew?! It got me thinking. I contacted the nurse educator at our area cancer center, where I was treated, to see if there were any BRA Day plans afoot. Then I contacted the plastic surgery practice that has a doc who performs microsurgical DIEP flap reconstruction.

"Mardi Bra" by Pam Evgen

I’d heard he’d experienced frustration in trying to convince doctors in outlying areas and the Dakotas to inform patients that he was offering another reconstruction option that previously had been unavailable here. Illustrative of an all-too-common problem--local surgeons not telling women about recon techniques other than the ones they perform.

"Rhinestone Cowgirls" by Linda Marie

"Phoenix Rising" by Eve Wallinga

"Breast Nest" by Char Hopela

I would like to announce BRA Day USA - St. Cloud, Minnesota! Art bras will be displayed at area businesses for a couple of weeks, along with an informational poster and brochures, and then will migrate to the central locale on Bra Day. We're not looking to raise money this year, just awareness. We’ll have a lunch, an educational discourse, an art bra exhibit, and some publicity. Since this is our debut in Central Minnesota, we didn’t get too wild. If no one faints this year, maybe we can crank it up next year. I've noticed that in some parts of the country, women are even  modeling the art bras!

I’ll keep you abreast of Breastoration - North BRA Day USA developments, in addition to those in New Orleans, of course. Wait 'til you get a load of ALL the bras. Coordinating the art bra part has been challenging, but fun. (Thank you to my NOLA sistah, Pam Evgen, my husband, and my writer's group and everyone else I PLEADED with to make a bra.)

Does this sound like something you might want to do in your hometown next year? You can start with an eye-catching art bra, an educational poster, some Breastoration pamphlets, and a venue willing to display them. You can easily change someone's life. And next year, lets all have our own flash mobs, too, like in New Orleans. But maybe ours won't just be dancing, if you know what I mean, and I know you do.

"Show Girls" by Pat Nelson

Yay for BRA Day! October 17, 2012

Bring on the first annual Breast Reconstruction Awareness (B.R.A.) Day! Launched in Canada last year, it's now gone international - recognized in the U.S. and many other countries around the world. Another of those awareness days, this one's smack in the middle of pink October, but specific to the issue of breast reconstruction. I remain stunned that so many women (70%) know little or nothing about breast reconstruction after mastectomy, but BRA Day embodies our resolve that we're not going to take it anymore! :-0

My first October, I hated PINK. It was six months after I was diagnosed, and PINK was everywhere. Perky PINK ribbons. Products peddled in PINK packaging. Reminders of what I wanted to forget. Personally, I was peeved.
:-(


By the following October, I saw the color through new eyes. No longer did I associate it primarily with the detested disease. Instead it reminded me of a legion of warriors: other survivors, those who support them, those who treat them, and the people in my own life who’d had my back (and front) the previous 18 months. :-)


I was completing my own breast reconstruction that second October. Not an easy journey. But definitely a positive one, given the poor, battered body cancer had left me. I became more than just the victim I’d been - the passive recipient of medical intrusions to my physical and psychological self. I took charge of who I was and who I wanted to be again. :-D



We’re lucky to be living in times of great medical advancement. Hopefully, in the future, people will be even luckier, able to prevent or cure breast cancer without the current slash and burn and poison techniques. We’re not there yet, but we have many more treatment alternatives than our mothers and grandmothers. And breast reconstruction is part of that treatment - a part that gets little notice or press, but which is so important. :-[

The official logo for B.R.A. Day builds on the traditional pink ribbon, along with the phrase, “Closing the loop on breast cancer.” So appropriate (though a bit harder to crank out the lapel pins). Here’s the website that tells all about it http://www.bradayusa.org/ as well as providing ideas of what you can do in your community to lend your support. You may find events already planned where you live. If not, try to get something going. Write a letter to the newspaper. Post something on Facebook. Do what you can to honor the day. And if you’re a successful breast recon patient yourself, flash someone! (o)(o)

Guest Blog for "Living Beyond Breast Cancer"

I'm so honored to be a guest blogger about breast reconstruction for "Living Beyond Breast Cancer.org." Here's the link!

http://livingbeyondbc.wordpress.com/2012/08/06/eve-wallinga-its-beautiful-its-me/

There Oughta be Another Law! - H.R. 5937

Sculpture Garden - New Orleans City Park

A bill that could significantly empower breast cancer survivors was introduced by Rep. Leonard Lance (R-NJ) on the floor of the House of Representatives on June 8th. It’s the Breast Cancer Patient Education Act of 2012 or H.R. 5937 and if passed, its implementation would be spearheaded by the secretary of Health and Human Services.

The Act would require that women be informed of the availability and coverage of reconstruction, prostheses, and other options, and about such choices as immediate vs. delayed procedures and the right to choose a surgeon who provides reconstructive care. For a full reading of the bill (the “Findings” section is very interesting), see: http://www.gpo.gov/fdsys/pkg/BILLS-112hr5937ih/pdf/BILLS-112hr5937ih.pdf

Since we already have the Women’s Health and Cancer Rights Act (see my March and April blogs) saying women have a right to breast reconstruction after cancer, shouldn’t we also have the right to know what our reconstruction choices are? But as it turns out, only 30% of us actually do.

The bill is currently comatose in the Committee on Energy and Commerce. Govtrack.us gives it only a 4% chance of survival--mainly because that’s the percentage of all House bills in the last couple of years that have actually become law. But I think it has a better prognosis, if Committee members hear from us. And election season is often a time when their hearing improves.

HR 5937 enjoys support by professional organizations, such as the American Society of Plastic Surgeons and many advocacy groups. Perhaps more important these days, it was introduced by a bipartisan team of legislators. If one of them is yours, you can call, text, tweet, post, mail, e-mail, or fe-mail him/her a hearty thumbs up: Marsha Blackburn (R-TN), Donna Christensen (D-VI), Hansen Clarke (D-MI), Gerald Connolly (D-VA), Michael Honda (D-CA), Leonard Lance (R-NJ), Barbara Lee (D-CA), John Lewis (D-GA), Gwen Moore (D-WI), James Moran (D-VA), Eleanor Holmes (D-DC), Charles Rangel (D-NY) and Ileana Ros-Lehtinen (R-FL). If they’re not on the list, maybe you can convince them to become supporters. FYI - The entire committee membership can be found at this link: http://energycommerce.house.gov/about/members.shtml

On Decatur - You know these guys.
They just stand still.

But ultimately it’s the chair of the Committee on Energy and Commerce, Fred Upton (R-MI), who determines whether the bill will continue to just lie there or gets some legs and moves on to the House. Michigan t'ain't too far from Minnesota. I think I oughta give him a holler. Hey wait, seems he only accepts messages from constituents in his 6th Congressional District in Michigan! Anybody out there?




http://www.youtube.com/watch?v=twRAJ0IHwT0

Breast Cancer and Depression or Even Warriors Get the Blues

Sculpture Garden - New Orleans City Park

You've been through hell and back. You've dealt with the shock of being told you have cancer and the realization that your life will never be the same again. You endured the barrage of doctors' appointments, tests, scans, surgeries, and various other assaults on your body. You were so busy, so focused, that it helped distract you from the deeper fear that this thing in your body wanted to kill you.

You were a warrior. People said they could never be as brave as you. And even though hearing this got to be annoying sometimes (as if you volunteered to get cancer and deserved some kind of a medal), you were proud of yourself for being able to charge through all your treatments (most of the time, anyway) and even joke with the medical staff.

Now that's all behind you. You expected you'd be happy. Ecstatic. Many other women with breast cancer weren't nearly as fortunate as you've been. You feel guilty when you think about it. Not just guilty that you're alive and they may not be, but guilty that you're not out celebrating life, living in the moment, appreciating the world you're still here to enjoy. Instead, you have all you can do to get out of bed in the morning. You can't summon up the energy or enthusiasm to do any of the things that used to make you happy before cancer. You feel hopeless, useless. You're thinking, Why can't I get a grip? 

Many of us have been there. I've been there. Try not to make it worse by beating yourself up. You have plenty of valid reasons for not feeling like yourself, including the effects of all those treatments on your body chemistry -- the chemo, maybe tamoxifen or surgery-induced menopause, all the anesthesia from perhaps multiple surgeries. And to top it off, you may have been laid up for weeks or months after those surgeries. Your body is still healing and your immune system taxed. That doesn't leave much physical or mental energy for anything else, even though you’re sick of feeling sick.

What you're going through may be temporary, related to any or all of the above. But even if you can point to many reasons for feeling as you do, it is possible that your body has gotten stuck there physiologically. And you might need some help getting unstuck.

If your symptoms go on too long and are interfering with getting on with your life, call your doctor. He/She will talk to you, run some tests, try to figure out what might be causing the problem. It's possible you're suffering from major depression. This is different than just “the blues.” It's brain chemistry, and it isn't something you can just snap yourself out of, any more than cancer was. Why continue to suffer, if it's not necessary? It's well-established by research that combining therapy with medication yields the fastest results and best prognosis when dealing with major depression. 

You'll see that some of the symptoms listed below could be associated with cancer treatment or “chemo brain.” Causes and effects are complicated. But don't rely on self-diagnosis. According to the American Psychiatric Association, having five or more of these symptoms for two weeks or more (including the first or second ones listed) can indicate major depression:

• Depressed mood most of the day, nearly every day, such as feeling sad, empty or tearful
• Diminished interest or feeling no pleasure in all or almost all activities most of the day, nearly every day
• Significant weight loss when not dieting, weight gain, or decrease or increase in appetite nearly every day
• Insomnia or increased desire to sleep nearly every day
• Either restlessness or slowed behavior that can be observed by others
• Fatigue or loss of energy nearly every day
• Feelings of worthlessness, or excessive or inappropriate guilt nearly every day
• Trouble making decisions, trouble thinking or concentrating nearly every day
• Recurrent thoughts of death or suicide, or a suicide attempt

You may not have major depression, but it still might help to have a professional to talk to about the traumatic life experience you've just lived through. Or maybe it's time to join one of those breast cancer support groups you previously ruled out. Whatever the cause, you can get through this, just like everything else you've gotten through. After all, you're a warrior!




http://www.youtube.com/watch?v=OEdVfyt-mLw

Reconstruction, Rebirth

When I need an energy infusion here in Minnesota, I listen to a certain NOLA band cranked up loud on my stereo. Months ago, enjoying the annual Halloween pilgrimage my husband and I make to New Orleans, my energy was high -- even before we strolled into Vaso Club on Frenchmen Street. But for only a $5 cover, and with an icy Abita Purple Haze in hand, the music lifted me to new heights. The notes tight, complex, everywhere at once. Throbbing with life -- my life -- the one I plan to ride for many years, now that cancer is gone from my body more than half a decade. The jazz screamed joy. Two trumpets, sax, tuba, trombone, snare and bass drum. The t-shirted guy’s t-bone hung loose at his side, his front tooth glinting diamond in the red stage lights that painted the brick wall behind him hot, as he sang, “I feel like funkin’ it up! Feel like funkin’ it up!”

Beating breast cancer can inject your life with a new level of passion, purpose, and energy. Part of it, I hate to admit, may be related to that spectral little wisp of a dark cloud that never totally dissipates, no matter how rosy your prognosis or how many years pass since the sun reappeared on your horizon. I’d rather credit my feelings to other things, but sometimes the shadows, by their contrast, do help highlight the heady largesse a healthy life offers. Part of that happy life, for me, is having all my body parts back. I highly endorse keeping as many as you possibly can. And if you can’t, then I recommend replacement. The studies back me up, too.


A few years ago, Dr. Andrea Pusic of Sloan-Kettering and some of her colleagues interviewed several thousand women to learn about the most important issues following breast surgery. From this they developed and refined the BREAST-Q questionnaire, which measures patient satisfaction and quality of life after breast reconstruction. They found that successful outcomes are not only based on what reconstructed breasts look like, but also involve physical, social, and sexual well-being, as well as process of care. This included the woman's satisfaction with the information and expectations provided, and her interactions with her medical team and surgeon. This assessment tool is now the worldwide gold standard for quantifying breast reconstruction satisfaction, which has greatly aided research looking at type, technique, and timing of surgery.

So what have we learned from some of this research? Well, judging from my quick and dirty Internet perusal of the literature, I found that women report higher satisfaction from autologous (using your own tissue) reconstruction rather than implant reconstruction -- over the short-term (three weeks) as well as eight years out. Among women who chose implant reconstruction, they were more satisfied with silicone than saline. But regardless of type or timing of breast reconstruction, it is a well-established finding that women who choose some form of breast reconstruction over none report better body image, greater self-esteem and sexual functioning, improved mental health, better emotional well-being, and higher energy levels.

One of the studies I read, which struck a personal chord, compared patients who had delayed versus immediate reconstruction. I should preface the results by saying it’s generally accepted that, other things being equal, immediate reconstruction provides a better aesthetic outcome than delayed. But eighteen months out from surgery, seventy-six percent of women who had delayed reconstruction were satisfied with their outcomes, as opposed to fifty-nine percent with immediate recon. Half of the delayed reported feeling sexually attractive versus one-third of the immediate.

In the discussion of the results, the researchers surmised that satisfaction with breast reconstruction outcome is often not so much a function of the quality of the work, as it is about what the woman is using for comparison. With immediate reconstruction, she is comparing her new breast to her original and seeing what she has lost. With delayed reconstruction, she is comparing her new breast to a scarred, empty chest and seeing what she has gained. I can personally attest to the experience of the latter. I call it magic. Even a resurrection. Definitely a rebirth.

And back on Frenchmen Street, who dat band? Rebirth! Rebirth Brass Band!



http://www.youtube.com/watch?v=CbtAoOp6_UM

Does WHCRA Work? As Paul McCartney famously sang, “With a Little Luck”

Lily Pond in New Orleans Botanical Garden - City Park

Last month I wrote about Janet Franquet, the young woman whose difficulties obtaining insurance coverage for her breast reconstruction inspired the passage of the Women’s Health and Cancer Rights Act (WHCRA) of 1998. This federal law intended that no woman should ever again have to endure what Janet did. Has that intent been realized? The answer for many women is yes. That’s definitely cause to celebrate! But still far too many women endure the heartbreak and frustration that Janet suffered fourteen years ago. Whether they are able to receive this life-changing surgery depends upon a variety of factors, not the least of which, these days, seems to be luck.

 Jackson Square

While miraculous advances have been made in the field of breast reconstruction, they are not available to all women. Even those fortunate enough to have private health insurance experience increasing difficulty obtaining approval for the reconstructive procedures and/or the surgeons they choose. This is especially true if they opt for reconstruction that uses their own tissue rather than implants. “Autologous” reconstruction is more costly for insurance providers and often requires surgical expertise only available “out-of-network.” Insurance companies frequently balk and build barriers to reimbursement, hoping women will tire of the appeals process and go with a quicker, cheaper alternative, even though it may cause her further health issues down the road. Some doctors refuse to work with certain insurance companies or require their fees paid up-front, leaving the hassle of reimbursement to the patients. Yet these women are still the luckier ones.

Although WHCRA is a federal law, it does not require Medicaid or Medicare to cover breast reconstruction after mastectomy. Huh??? These programs were established as an amendment to the Social Security Act in 1965, and even though the federal government matches state dollars to fund them and mandates that some general medical needs be provided, each state has a great deal of latitude. Each administers its own program, establishes its own eligibility standards, and determines the type, amount, duration, and extent of services. And a few states have opted not to provide for reconstruction after breast cancer!!! (Please excuse my past and forthcoming editorial punctuation.)

Sculpture Garden
 New Orleans Museum of Art - City Park

So, are the opting-out states like Mississippi, Colorado, Georgia, and a handful of others, the “bad” states? And are the majority who do provide Medicaid coverage for breast recon “good”? Unfortunately, just because a state (or an insurance company) uses pretty policy verbiage claiming it provides benefits consistent with or even exceeding WHCRA, doesn’t guarantee there’s much meaning behind the words. Or I should say, dollars behind the words.

According to the American Society of Plastic and Reconstructive Surgeons, the national average fee for the more advanced types of breast reconstruction is approximately $9300 per breast (as of 2011). Now let’s pick a “good” state, which uses exceptionally beautiful policy verbiage, like New York. How much does its Medicaid provide for reconstruction after breast cancer? Would you believe $600??? I wonder how many surgeons, or anyone else, would be willing to provide their services at a 94% discount.

Fortunately, thankfully, there are a few surgeons who will take on patients whose coverage via Medicaid or private insurers is woefully low. Sometimes these are salaried surgeons working for a clinic or hospital willing to forgo profits. Or doctors in private practice who do other types of cosmetic surgery to help counterbalance the losses incurred by treating uninsured or underinsured breast cancer patients.

Some women have been helped by benefactors through religious organizations or foundations, such as Breastoration, which helps cover ancillary expenses of breast reconstruction surgery. And some women fortuitously find surgeons willing to take them on, purely out of the goodness of their hearts, as do some surgeons in the New Orleans area. That’s a whole different level of lucky! But what woman deserves to rely on luck when she’s going through, perhaps, the worst trial of her life? And what about the woman who is just plain out of luck?

NOLA’s own Big Al Carson sings: ...If it wasn’t for bad luck, I wouldn’t have no luck at all…

Sir Paul McCartney sings : With a Little Luck (This could serve as Breastoration's rallying theme song!)

End note: Linda McCartney, singing in this video, died in 1998 at age 56, three years after her diagnosis with breast cancer. One year later, Paul McCartney and others performed a tribute, “Concert for Linda,” raising over $2 million for cancer research at Memorial Sloan-Kettering and Arizona Cancer Center, where she received her treatment. According to Wikipedia, her husband’s last words to her were: You’re up on your beautiful Appaloosa stallion. It’s a fine spring day. We’re riding through the woods. The bluebells are out, and the sky is clear-blue.