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.

There Oughta Be a Law. Thanks to Janet, There is.

No snow softened the bare outlines of  trees and ground in Ronkonkoma, Long Island in the winter of 1997. Janet Franquet, 32, a new mother and nurse at a rehabilitation center and nursing home, looked forward to celebrating Christmas with her husband, Robert, and their baby, Michael. But in the midst of that festive season, Janet was diagnosed with inflammatory breast cancer (IBC) - rare and very aggressive, diagnosed more often in younger women.

After undergoing chemotherapy in an attempt to shrink the cancer, Janet’s next course of treatment was a mastectomy. Since IBC infiltrates the lymphatic vessels of the breast skin, Janet’s surgeon planned an immediate abdominal flap breast reconstruction, which would use her own abdominal skin and fat to restore her breast and close the wound.

But the day before surgery, her insurance provider denied her coverage, saying the procedure was cosmetic. They suggested her surgeon use a pig skin graft instead. “I was numb,” Janet said later. She and her surgeon, Dr. Todd Wider, began a lengthy appeals process with the insurance company.

Janet Franquet - Christmas 1995
 Photo lovingly provided by her twin sister, Joyce Gagliardi

Some states, including Janet’s home state of New York, had already passed laws barring insurance companies from denying coverage for breast reconstruction after mastectomy. But they didn’t cover self-insured employer plans, which are under federal jurisdiction. Robert provided the health insurance for the family through his job as a truck driver, via his trade union. Unfortunately that fell outside the new state law.

Watching this young mother endure the assaults dealt her by both cancer and her insurance provider, Dr. Wider called upon Carol M. Baldwin, a breast cancer survivor and well-known breast cancer advocate (and mother of several famous actors). Two years prior, she and her family and friends had founded the Carol M. Baldwin Breast Cancer Research Fund. She was able to use her influence to enlist help for Janet from then U.S. Senator Alfonse D’Amato.

Thankfully, Dr. Wider went ahead with the reconstructive surgery, generously providing his services free of charge. Eventually the insurance company reversed its decision.

Janet was determined to fight for the medical coverage to which she believed every woman in her circumstance had a right. Her bravery filled D’Amato with similar resolve. “What happened to Janet Franquet was tragic,” he said. “It should never happen again.” On the floor of Congress, D’Amato championed for passage of a law that would require all insurance companies to cover breast reconstruction. D’Amato said, “I ask you, Mr. President, how many other Janet Franquets are out there? Will they be lucky enough to have a Dr. Wider to take care of them?” On October 21, 1998, the Women’s Health and Cancer Rights Act (WHCRA) was signed into federal law and officially named “Janet’s Law.”

Today, too many women remain unaware of this legislation. They mistakenly believe breast reconstruction after cancer is considered cosmetic and thus beyond their financial means. But Janet’s Law states that if a woman has health insurance covering mastectomy, breast reconstruction and surgery to attain symmetry are covered as well.

Janet lost her battle with cancer in May of 1999. In her obituary, D’Amato was quoted, “She demonstrated great courage during her short time on this earth. She said to me, ‘Maybe God put me here so that I could do this.’” He added, “She was the inspiration for a national law which now says every woman is entitled to reconstructive surgery. If not for Janet Franquet, I don’t think this would have happened.”

Janet’s Law states:

(a) IN GENERAL -- A group health plan, and a health insurance issuer providing health insurance in connection with a group health plan, that provides medical and surgical benefits with respect to a mastectomy shall provide, in a case of a participant or beneficiary who is receiving benefits in connection with a mastectomy and who elects breast reconstruction in connection with such mastectomy, coverage for--
(1) All stages of reconstruction of the breast on which the mastectomy has been performed;
(2) surgery and reconstruction of the other breast to produce a symmetrical appearance; and
(3) prostheses and physical complications of mastectomy, including lymphedemas;
 in a manner determined in consultation with the attending physician and the patient.

Thank you, Janet.

It's House of Blues, Baby!

I’d only been to House of Blues once before, for their famous Sunday Gospel Brunch. Though I was never much of a fan of the Gospel music genre, after that brunch, I was converted. The place remained imprinted on my psyche -- as much an iconic experience of New Orleans as first seeing the massive shadow of Jesus on the back wall of St. Louis Cathedral, hearing the drumbeats of the Voodoo ceremony echoing off the antebellum walls of the Quarter on Halloween night (and I’m talking Voodoo Authentica, not the Voodoo Music Festival), and having my very first taste of heaven (bread pudding) at Pierre Maspero’s. Imagine then, the thrill for this northern girl, as my husband and I entered the venue the afternoon prior to Breastoration’s first big fundraiser, “House of Pink” at House of Blues!

Our mission was to figure out a way to hang the quilt I was donating as an auction item for the event. That’s a whole story in itself. Well, two stories. One about making the quilt and the other about hanging it (an engineering challenge I’d worried over for several months), especially since House of Blues allows nothing to be hung on the walls. But as intimidated as I felt about that, and as nervous as I was about not knowing a soul, I was soon welcomed by the lovely silent auction ladies from the Louisiana Breast Cancer Task Force. They were busily arranging the many donated items to show to their best advantage. I immediately felt a common bond. I’m on the same committee, back home, for our breast center’s annual fundraiser. It’s the committee no one really wants to be on -- asking local businesses to donate items, especially when times have been tough for the last few years. Cheers to the ladies who brave the asking! And of course, we had other things in common -- all of us members of the sorority no woman wants to join. Official color: pink (from cool pastel to hot fuchsia).

Later, standing on the main floor, watching Rockin’ Dopsie Jr. and the Zydeco Twisters boogie with the growing host of ladies who’d joined them onstage, I see that New Orleans gals are way more comfortable “getting down” than their more staid contemporaries up in the frozen climes of Minnesota. While I enjoyed a gin and tonic (to loosen up) from the open bar (wow!), it all felt like a dream. I was standing in these hallowed halls in New Orleans, more than just a tourist this time, celebrating a major milestone for the foundation that, not too many months before, was just an idea. Turning to my husband, shaking my head, I said, “Toto, we’re not in Kansas anymore!”

Funds netted that night: over $70,000. Amen!