National Cancer Survivors Day

Well, we have Mother’s Day and Father’s Day, Grandparents’ Day, and even Bosses’ Day for pete’s sake, so why not Cancer Survivors Day? Makes perfect sense, as there are millions of us around the world. I do wonder, though, why there’s no apostrophe in the title. I double-checked it on the NCSD website and sure enough, no apostrophe.

It’s today, by the way — I feel like I should wear a shirt that says “Kiss Me, I Survived Cancer” but I’m not really the kissy type. I guess I could wear my “cupcakes” t-shirt, which I love, but then it seems like my “cupcakes” get the credit for kicking cancer to the curb when really, they were the culprit in the first place. Without them, I never would have had breast cancer, so I’m not giving them the credit for having survived it. I will wear it to the gym, though, because I love the look on people’s faces as they read it, then do a not-so-subtle double-take at my chest.

So what is National Cancer Survivors Day all about, anyway? Probably something a little more meaningful than wearing a snarky t-shirt and giggling to myself as the shockwaves from said shirt ripple through the gym. According to the NCSD website,

“National Cancer Survivors Day® is an annual, treasured worldwide Celebration of Life that is held in hundreds of communities throughout the United States, Canada, and other participating countries. Participants unite in a symbolic event to show the world that life after a cancer diagnosis can be meaningful and productive.”

Well, I’m certainly proud to be part of an annual, treasured worldwide celebration of life. Although I think I missed the parade. Considering how many people are affected by cancer, you’d think this day would get a bit more press. There’s probably a Lifetime for Women movie about it and I missed that too.

As usual, I have lots of questions about this annual, treasured worldwide celebration of life. Who qualifies as a survivor? And when does survivorship begin? What time was the parade? The National Cancer Survivors Day Foundation defines a “survivor” as anyone living with a history of cancer – from the moment of diagnosis through the remainder of life. I think it’s perhaps a bit more personal than that. I also think it’s more than just surviving cancer. I also survived a nasty infection and a nearly  year-long regime of some pretty bad-ass antibiotics. I survived a complicated and intense reconstruction process, and I survived yet another long, hard recovery.

I considered myself a survivor as soon as my mastectomy was over. Surgically removing the tumors, and thereby the cancer, from my body was when my status changed from “regular person” to “survivor.” So for me, I became a survivor in the late afternoon of May 13, 2010. Although I certainly didn’t feel like much of a survivor at the time, bandaged and battered, stitched up and sore. Moving my body at all was a seemingly unattainable feat, and raising my arms high enough to put chap stick on my lips was definitely unattainable. I wasn’t able to slick my own lips for a day or so.

At the time, I had no concept of what a double mastectomy truly meant or looked like. So focused was I on ridding the cancer that I gave zero thought to the aftereffects of the surgery. Even now, in the hazy afterglow of just one year’s time, I struggle to remember exactly what I looked like after that first surgery. In fact, when Trevor gave me The SCAR Project book for my birthday a few days ago, I looked at the portraits of mastectomied women and asked, were my scars vertical or horizontal? For a brief moment, I couldn’t remember. (They were vertical, BTW.)

Deborah Lattimore

That’s why I’m so grateful for things like The SCAR Project and for women like Deborah Lattimore. Like the women who were photographed for The SCAR Project, Deborah Lattimore didn’t want to forget what she looked like after being mastectomied. This defines a survivor, IMHO: facing a shitty situation with not just courage but with moxie. Reading Deborah’s blog, I’m so impressed and moved and in awe of her take-no-prisoners attitude. I immediately felt a kinship with her as I read what she wrote about her post-cancer silhouette soon after her bilateral mastectomy: “my body is still ‘re-architecturalizing’ and will for the coming year. eventually my chest will be completely flat and the scars will be an even line. i really love my skinny small body!” Cheers to Deborah on this annual, treasured worldwide celebration of life. Wish I could tell her happy National Cancer Survivors Day to her face, and to bask in the supreme power of a strong, confident, self-assured woman who tells cancer to bugger off then shows the world the true face of a survivor. No padded bras, no prostheses here. Not that there’s anything wrong with padded bras or cutlets. How we face the world post-mastectomy is an immensely personal decision, and I in no way want to imply judgement on how any woman makes that decision. For me personally, I applaud women like Deborah who celebrate their mastectomied bodies and view them as a badge of honor. In our breast-obsessed culture, this is no easy thing.

So happy National Cancer Survivors to everyone. I’m thinking we should all have cake. What kind of cake is appropriate for NCSD? Something festive, for sure (you know how I love celebrations). This one is nice:

Love the colors, but the pink butterfly kinda creeps me out.

Maybe this one, then:

Nah, I’m not much of a cat person, and it’s not a birthday cake I’m after, although I do love the idea of the cat eating a fish-shaped cake. Maybe we survivors should eat a tumor-shaped cake. Ewww, gross. Never mind.

Ok, so something breast-cancer related:

Or not. Definitely not.

This one is pretty, and the lemon filling looks yummy:

This one is hilarious, although not appropriate for the annual, treasured worldwide celebration of life:

Maybe something from this bakery:

Surely they’d have just the right kind of cake for the annual, treasured worldwide celebration of life. Something like this, perhaps?


The day after

The day after one’s birthday can be a let-down, but I’ve got enough festive spirit to carry me right on through. Needless to say, yesterday was one of the best days ever. Big kudos to Trevor for orchestrating a fantastic day. This one is going down in the record-books as the most festive birthday celebration ever.

Yes, I wore a tiara, and yes, that’s a glass in one hand and a bottle of Veuve Clicquot in the other. At the nail salon. What of it? Doesn’t everyone do that on their birthday?

Having that beautiful orange box make an appearance at my party not once but twice was pretty great. Happy birthday to me!

I’m laughing so hard here because the first cork that popped hit the ceiling and scared the nail techs. I guess they don’t have a lot of champagne corks being popped as they prepare to buff & polish clients’  nails.

I’m sad to say that not one photo was taken at my birthday lunch, but picture this: a group of smiling, laughing ladies gathered around a festive table while pitchers (plural) of frozen margaritas are passed. Glasses clink, some with salt and some without, in a toast to great friends, good food, and enduring health.

Meanwhile, a kind senorita whips up a batch of fresh guacamole tableside, adding just the right amount of cilantro, jalapenos, lime juice and kosher salt (but no onions–don’t like em). Custom-made, tableside guac is one of the finer things in life. A big thank you to Mr Reyes, GM at Escalante’s, for the complimentary guac and queso for my party. Abundio knows how to treat the ladies!

Handmade Mexican food just kept coming as the conversation (and margaritas) flowed. Get a group of women together to eat, drink, talk & laugh and you know it’s going to get a little wild. We kept it in check but certainly had a stellar time.

Meanwhile, on the penultimate day of school, Macy received the classroom award for “Most Helpful,” which doesn’t surprise me one bit. School’s out today, which means my kids are now 4th and 7th graders. Let the summer fun begin!

thanks, Carla, for the photo!


Shut up about the small stuff

amazon.com

Remember the book Don’t Sweat the Small Stuff? I have a copy, somewhere. Or did at some point. I read it, too, thinking it would be good for someone like me: impatient, intolerant of idiots, and in turmoil over all that I couldn’t control.

The book was on the best-seller list for more than 2 years. Richard Carlson went on to write some 20 books in this series, from Don’t Sweat the Small Stuff in Love and Don’t Sweat the Small Stuff for Women. I think I had the original copy, and knowing me, might not have made it through the entire book. Too impatient for that.

I do recall a few ideas Carlson presented in the book, such as “live in the present” and “become more patient.” Not sure I managed either, since I’m always in a hurry, usually thinking about what needs to be done next, and am most definitely not patient. It’s hard to become “more” of something when you’re not really “any” of that thing.

“Life isn’t an emergency” is another one of Carlson’s anti-sweat-isms. I’m not even sure what that means, but I can tell you for certain that it does not apply to cancer patients. Life most certainly is an emergency when you’re dealing with diagnosis, research, treatment options, doctor’s visits, prescription drugs, mounting medical bills, surgery, hospitalizations, and the like.

Carlson also encouraged us to “get comfortable with the not knowing.” I feel pretty confident saying that this will never happen. Never. Ever. I most definitely will not get comfortable with not knowing what happens next, where this “journey” is going, or what the future holds. Hopefully Carlson took his own advice, as he died from “an illness” in 2006 at age 45. That’s 3 years older that I am now (well, I will be on Wednesday), and 45 is too young to die, IMHO.

I wonder if Carlson would have had the same attitude if he too had been facing cancer. Maybe he would have sweat for a little bit, then invoked his ant-sweat-isms to conquer all of the “small stuff” that invades ones life along with a diagnosis of cancer.

My blog friend Lauren wrote yet another stellar post about this very subject. Every time I read one of her blog posts, I’m hard-pressed to say which part I like most, which idea resonates the loudest, which anecdote finds me nodding my head in agreement, or which passage has the power to make me misty-eyed. This week, it’s this passage that stands out:

“There are no small things in cancer. There are no ridiculous things. People like to tell us not to sweat the small stuff, but there is no small stuff in cancer. There is no such thing as a small assault on our feelings/psyche. Sometimes, the tiniest pebble in our shoe is the one that will make us most weary; indeed, the smallest of stones can derail a train.”

I now feel as if I have permission to sweat the small stuff.

As if I needed anyone else’s permission.

A whole lot of the cancer thing is indeed big stuff. Not to imply that my “journey” is harder than anyone else’s, but I would respectfully submit that being young-ish with dependent kids at home makes for more sweat-worthy stuff along the way. Laura, another blog friend painted a vivid picture of battling cancer while raising young kids when she wondered how to hold back tears when her 6-year-old said, “I forget what you looked like before the cancer when you had long hair.” Tell me how to not sweat that. Please. It reminds me of my own struggle to remember what my mom looked like before cancer. I was 36 at the time. I still have to work to hear her real voice and not her “sick” voice, and I was a grown woman at the time of her battle. Laura also remarked upon the depression and guilt she felt as her 8-year-old son helped his little brother pack his lunch for school while she lay on the couch motionless. That makes me sweaty just reading about it.

Lauren also covered a topic in her post that I recently experienced myself. It involves Press ‘n Seal. 

You know, the stuff in your kitchen that you use to cover food.

While Press ‘n Seal has many domestic uses, it has a medical use too: covering one’s port while said port is slathered in numbing cream, before facing the 20-gauge needle used to puncture the skin and the port membrane to deliver drugs.

Last week I went for my regular port maintenance, in which I have to have the oncology nurses access the port (poke the big-ass needle through it) to flush it. This needs to be done every 4 to 6 weeks to avoid a blog clot. The port is tied into the jugular vein, remember, and I do not want to mess with that big dog.

Before my port maintenance, I use the numbing cream (when I remember) so the needle stick isn’t quite so traumatic. Needles have always been rather sweat-inducing for me. I don’t care what Richard Carlson would have told me, I have never liked needles and they’ve always given me that sweaty-palmed, slightly nauseated feeling.

The day of my most recent port maintenance, I was going from the gym to the oncologist’s office. I told my Runnin’ Buddy to remind me about halfway through to use the numbing cream. I was pretty proud of myself for remembering the cream and the Press ‘n Seal, along with a hypodermic needle from my stash at home and my teeny little vial of B12 that my sweet oncologist prescribed for me. I get a B12 shot once a month, and it was time. I figured since I’d be there, why not ask the oncology nurse to give me the jabful of B12?

Any shot at resuming normal life is gone, baby gone as soon as you realize you have prescription Lidocaine, B12, a needle, and Press ‘n Seal in your purse. Any attempt to seem like a normal person is duly shattered by that paraphernalia in one’s pocketbook.

So at the appointed time, I stood up against the wall of mirrors in the gym, pulled my shirt to the side and slapped a thick layer of cream on my port. Then I cut a small piece of Press ‘n Seal and covered the cream so it wouldn’t sploosh all over my shirt. While I finished my workout, the cream slid around a bit, and the Press ‘n Seal crinkled with each movement, and the curious onlookers were probably wondering what in the world they just witnessed.

Here’s what Lauren had to say about our ol’ friend Press ‘n Seal:

“In all my years of reading on PTSD and grief and trauma with breast cancer, not once have I seen a section on dealing with the emotional trauma of how dehumanizing it is to put Press N’ Seal on your body. Not once have I seen a section on how deeply humiliated you feel when you are made to walk half-naked through hallways on the way to an MRI, where then, in front of the room full of techs, you must disrobe and awkwardly lay on your stomach and hang your breasts through two holes in a plank. There is nothing in any book about how violating it feels having a breast written on in sharpie, and that the last time you see it in your life, it has a doctors intials on it. There is nothing in chapter 3 of any book that discusses the indignity of having our bodies being measured with trigonometry like a drafting project as we lay there naked, and get tattooed by nurses for radiation, especially when you are one who doesn’t like the thought of ink in your skin. There is nothing, nothing about the angst of a port sticking out of your body, or how impersonal it feels having your body lifted and shifted by nurses until you are lined up just right for radiation.”

I can’t speak to the parts about radiation, but on all the other stuff I say yep, that’s right. How strange it is when things like Press ‘n Seal on your body become part of your life. How sad when experiences like the ones Lauren describes become lasting memories, and not in the warm & fuzzy way. How terrible its is when you realize that there’s “nothing in any book about how to come to terms with the death of control over your body and life,” as Lauren so aptly puts it.

I’ve learned, just as Lauren and Laura and millions of other cancer patients have learned, that the small stuff becomes big stuff, and the death of control over our bodies and lives is just one of the many casualties in the “cancer journey.” The PTSD in one’s daily life also chips away at the idea of normalcy, signaling the death of innocence, the end of easy.  It may or may not be well-documented, but it’s there. And as Lauren says, “Just because it is not said or written about, doesn’t make it less real. It does not make our feelings about many of these more ambiguous losses less valid, less deserving of mention. It does not make the trauma less valid, it does not make us whiners about small stuff.”

She notes that “we will suffer many more deaths on the cancer journey. Some by things taken from us, and some by things given/done to us. There will be a thousand deaths in cancer, and then a thousand more.”

And so I will indeed sweat the small stuff. Anytime I want.


What not to buy me for my birthday

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

promisemefragrance.com

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

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

komen.org

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

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

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

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

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

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

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

No, that’s not a type-o.

$1.51 a bottle goes toward research.

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

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

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

googleimages.com

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

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

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

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

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

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

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

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



I live now

“With the past I have nothing to do; nor with the future. I live now.” — Ralph Waldo Emerson

I live now.

Yes indeed.

I’m digging that quote. Today, as most days, I woke up and stole a few minutes before hitting the ground running. I like to check my email first thing in the morning, and see what’s what before I start my day. I have several cancerbabes in blogland whose musings I follow. I don’t know any of these women personally, but we share a commonality that is cancer, and that tends to make friends from strangers faster than anything, including hard liquor.

One of my cancerbabe friends posted some really, really good news on her blog today, and it was the first thing I read this fine morning. Long story short she’s a 28-year-old dealing with Hodgkin Lymphoma who left her home on the East Coast to spend some time in my lovely H-town at MD Anderson to endure a grueling clinical trial.

Sounds pretty awful, right? As most cancers are, whether big or small, early- or late-stage. Cancer is just plain awful. But my cancerbabe blogger friend had good news to share about her just plain awful cancer: the clinical trial worked and she’s in partial remission.

Hooray & hallelujah!

Another strike against the many-faceted and much-dreaded disease that is cancer.

I read the rest of my emails with a smile on my face, and as I hauled myself out of bed, that smile stayed with me.  I believe in celebrating every little bit of good news that comes our way, especially when dealing with the dreaded C. Nope, I’m not opening champagne at this early hour, before even getting my little darlings out of bed, preparing their breakfasts, making their lunches and seeing them off to school. Thought about it, but resisted. I’ve learned the hard way that bad things happen to good people, and to counteract that hard truth by celebrating all the good things that come along. Sometimes with champagne, but sometimes not.

It’s easy to get caught up in all the bad things about cancer. And believe you me, there are many, many bad things. Watching my sweet, vivacious, and much-beloved mama be eaten alive, literally, by uterine cancer was horrific. Knowing that I would have to live the rest of my life without hearing her big belly laugh, without her all-knowing guidance in raising my own kids was b-a-d bad. Seeing her ravaged body become ever more frail day by day left me wondering how much worse could it possibly get. Because as bad as it is, there’s always more. My BFF Ed tried to tell me that. He knew, from watching his dad die of pancreatic cancer. I didn’t want to believe him, and childishly clung to the idea that it was as bad as it could possibly be. But it wasn’t, and no matter how hard one “fights,” once cancer gains a stronghold, it’s devastating. No matter how much one wants to win the “battle,” there’s no guarantee.

If anyone on this Earth deserved to win her “battle” it was my sweet mama. Her own mama died when she was 13, leaving her to raise her younger sister, who my mama had to work hard to forgive for usurping her “I’m the baby” spot in the family line-up. They lived on a farm and life was hard. She was the only one of her 4 siblings to graduate from college, and she did it in 3 years.Barb's necklace She was president of her sorority, which is how she scored this fetching necklace, and I’m sure she bossed her sorority sisters into next week. Determined to make her mark in the world, she became a teacher, and did it well. She married into a tight-knit Greek family who didn’t necessarily welcome “foreigners,” but she won them over. Every last one of them. Even the stubborn, crotchety old ones. She raised two kids in a most-loving and uber-secure environment. Everything she did, she did it well and with such love & warmth that people were drawn to her. She made this world a better place.

Yet, after a multi-year, multi-stage “battle,” cancer claimed her as its own. Not fair. Not by a long shot. But fairness has nothing to do with winning the “battle” against cancer. So much of it is luck and circumstance. So much of it is out of our control. That’s a tough pill to swallow for a Type A bossypants like me.

And that’s exactly why I live now.

Cancer steals so much from us. Big things: health (duh), time, innocence, body parts, hair, self-esteem, a good night’s sleep, healthy body image, money, freedom, time, faith, security. Small things: major wardrobe issues, range of motion in yoga class, being able to look in a mirror without wincing, missing important events, becoming fearful instead of being carefree.

The past is gone, and no matter how hard you may try, you ain’t gettin it back. You can’t change it. The future? Good luck with that one. My theory is you gotta work hard, bear down, be the person you most want to be, and hope for the best. Hope that you’ll avoid the evil lottery that decides who will be stricken with cancer. Keep on living a good life and doing all the right things (antioxidants, splurges in moderation, wholesome foods, regular check-ups and exercise, blah blah blah) but don’t for one second expect those things to earn you a free pass. Because cancer strikes no matter what.

So I live now.


I Am Barbie

mainstreettheater.com

On April 29, 2002, the woman who created Barbie died. I guess I missed the news that day. A New York Times op-ed written about Ruth Handler said that “perhaps Barbie’s most significant attribute is her capacity to make people wonder what she would be like if she were really human. But to imagine Barbie as a real woman is to imagine her subject to time itself. It is to imagine her with real politics, real worries, a constant struggle with the memory of her own once ideal figure. Above all, it is to imagine her with a voice.”

I went to a play this past Friday night called “I Am Barbie,” and we no longer have to imagine Barbie with a voice. She spoke, via actress Ivy Castle-Rush in the titular role, and she had lots to say about her life & times.

photo by Gary Fountain

Notes from the playwright, Walton Beacham, say:

“Barbie celebrates her 50th birthday by reminiscing about her careers, her relationship with Ken and other characters from her life, who express their own opinions about Barbie. An important motif is Barbie’s breasts as cultural icon, symbol and statement of feminine status, power and vulnerability. Two of the characters, Midge’s mother and Barbie’s creator Ruth, develop breast cancer.”

More on that in a sec.

The play was my introduction to Ruth Handler. I must admit, I’d never given Barbie’s creator much thought. Although more than 1 billion Barbies have been sold in more than 150 countries, and although Barbie even has her own Hall of Fame, in Palo Alto, CA, I never thought much about  her. I have bought Barbie dolls, clothes, and accessories as birthday gifts for Macy’s friends, but knew nothing of Barbie’s story or that of her creator.

I do now.

googleimages.com

Barbie  was created in 1959 for Handler’s daughter, Barbara.  (And yes, Ken is named for Handler’s son, which is kind of creepy when you think about Barbie & Ken’s relationship. Ewwww.)

the Lilli doll

Based on a German precursor named Lilli, Handler intended the Barbie doll to help girls “play out their dreams of adolescence and beyond,” hence Barbie’s trajectory from going to prom to going to college to getting married to going to the Moon. She’s embraced every fashion trend that’s come along, and she’s dabbled in nearly every career imaginable. In her 1994 autobiography Dream Doll: The Ruth Handler Story, Handler wrote: ”My whole philosophy of Barbie was that through the doll, the little girl could be anything she wanted to be. Barbie always represented the fact that a woman has choices.”

I suspect that Handler was talking about more than just Barbie’s wardrobe.

I wonder, though, if Handler had any idea of how wildly popular Barbie would become. As the co-founder of the Mattel Toy Company, Handler clearly had a head for business, and could be considered a visionary in terms of the range that Barbie ended up encompassing. Did Handler know that Barbie would become a flashpoint for debates in psychology, cultural politics, feminism, fashion, women’s rights, and body image, just to name a few? Did she consider the firestorm of controversy Barbie could ignite, for example, just by her Teen Talk version uttering the phrase “Math class is tough?” That one really got the feminists going, and reinforced the stereotype that girls aren’t so great at math.

Well, I didn’t play with Barbies much as a little girl, and thankfully escaped her attempts to sway my feminist tendencies or influence my attitude toward math. In fact, my next-door neighbor growing up is a female statistics professor who taught classes, wrote textbooks, and became the chair of the math department. She gave me a tote bag once that says “Anything boys can do, girls can do better.” When my middle-school speech class had to present a debate-style speech, mine was on the ERA, and I carried my notes in the girl-power tote bag. Take that, Teen Talk Barbie.

I missed the memo, too, on Barbie dictating body image. Like most of the world, I certainly have always thought her proportions are ridiculous — a real-world scale determined she would be 5 foot 6 with a 39-21-33 figure. Her internal organs wouldn’t even fit inside that package, for pete’s sake. Although she did undergo a makeover in 2000 to eliminate the waistline “seam” that made her poseable and reduced both her bust and her hips, she’s still a pretty unrealistic feminine ideal. However, it never occurred to me to let a doll determine how I feel about myself.

Maybe missing that memo allowed me to cope with losing my breasts to cancer, just as Handler did in 1970. She was diagnosed and underwent a bilateral mastectomy the year after I was born. To say that diagnostic and surgical progression has been made since then might be the understatement of the year. Facing her diagnosis the same way she approached the toy business — aggressively and successfully — Handler took on cancer awareness and made it her mission to ensure that women who joined the pink ribbon club after her had an easier time with it.

See, Handler faced breast cancer at a time in which real women had fewer choices than Barbie; the Women’s Health & Cancer Act that required insurance companies to cover reconstruction wasn’t enacted until 1988. Handler faced her post-mastectomy body-image demons head-on. And, dissatisfied with the limited prostheses options available at the time, she created her own.

Handler developed the Nearly Me breast form and founded Nearly Me Technologies, Inc in the mid-1970s after she discovered that the breast forms available at the time were “not comfortable, realistic, beautiful, or easily purchased,” according to the company’s website. Handler said, “When I conceived Barbie, I believed it was important to a little girl’s self-esteem to play with a doll that has breasts. Now I find it even more important to return that self-esteem to women who have lost theirs.”

”Until now,” Handler said in 1977, ”every breast [prosthesis] that was sold was used interchangeably for the right or the left side. There has never been a shoemaker who made one shoe and forced you to put both your right and your left foot in it.” She’s right about that.

Keep in mind that Handler was operating in an era in which there was little talk about breast cancer. She was determined to change that, however, and worked tirelessly toward early detection as well as helping post-mastectomy women reclaim a sense of normalcy. Handler personally fit First Lady Betty Ford with her prosthesis after Ford’s mastectomy in 1974. In promoting Nearly Me prostheses, Handler would unbutton her shirt during interviews and publicity jaunts and challenge a reporter or photographer to feel her breasts to determine which was real. Handler said that with high-quality prostheses, “a woman could wear a regular brassiere and blouse, stick her chest out and be proud.”

In talking about her two careers–creator of both Barbie and Nearly Me–Handler was known to say, ”I’ve lived my life from breast to breast.”

She knew what she was doing when she hired retired Mattel workers to design the Nearly Me prostheses. The same people who created Barbie’s breasts went to work, using similar manufacturing processes and materials. They discovered that using a polyurethane outer skin over silicone gel provided the structure and shape to match a real breast. And, just like with Barbie, no nipples were necessary.

So how does all this fit into a play? Very carefully. A review of “I Am Barbie” said that “the trickiest aspect is Beacham’s decision to include Ruth’s struggle with breast cancer as a recurring theme. One can see why Beacham felt it important to include this part of the real Ruth Handler’s story, relevant to the play’s theme of women’s body image.”

A breast cancer diagnosis, while dreadful, is real. Good things happen to bad people, and even Barbie gets the blues. Beacham did us all a favor by including this theme in the play. Yes, it’s uncomfortable to face heavy subjects, and perhaps some audience members felt a bit squirmy as they saw Ruth’s and Midge’s struggles portrayed. With all the “pink-a-fying” and prettying up of the disease, it’s nice to see a gritty and realistic version.

So thank you, Walton Beacham for not shying away from breast cancer’s impact on women. And thank you, Ruth Handler. For inspiring a playwright to tackle the very real theme of breast cancer and body image. For proving once again that life does not end with a breast cancer diagnosis. For saying “that’s not good enough” to the options available post-mastectomy. Oh, and for creating Barbie, too.

P.S. Of course there’s a Pink Ribbon Barbie, whose marketing material says she’s “wearing a pink gown with a signature pink ribbon pinned to her shoulder, Pink Ribbon Barbie doll can help open a dialogue with those affected by breast cancer, while supporting this worthy cause!” She can be yours for the low, low price of $78.99 at amazon.com.



Tennis time

Today’s the day, people.

I’m paying a call on my true love. Nope, this isn’t a tell-all expose a la Arnold Schwarzenegger.

It’s tennis.

Finally.

I’ve been cleared by my favorite doc to start playing again. To ease back into it and with specific instructions to stop in my tracks if I feel even a tiny pull in my 17-inch-long belly incision. That super-long, super-bad incision is healing up quite nicely, and it’s my job to guard it and baby it.

When I got the green light from my favorite surgeon, I asked his nurse  to please put a note in my file and have him sign it to that effect. A permission slip of sorts, so that when I see him again in a couple of weeks and mention tennis, he doesn’t forget he’d given me the go-ahead. The last thing that man and I need is another argument. Although, it has been a while since we had one….

With the tennis ban being lifted, I realized that I haven’t so much as picked up a racquet since The Big Dig, nearly 3 months ago. In fact, I had to dig around in the garage for my tennis bag. Sadly, it had been consigned to the garage instead of riding shotgun like normal, and it hung on a hook, quite forlornly, I might add, all this time. Over the course of almost 3 months, things like stadium seats and insulated cooler bags were hung in front of my beloved bag, and it took on the role of wallflower instead of constant companion. I had to take my racquet out, just for a sec, and hold it in my hand. Just like old times. 

Today’s return isn’t full of the fanfare the met my return to the court last fall, after finally triumphing over the God-awful post-mastectomy infection and all its myriad complications. You loyal readers know the story so I won’t bore you with the details yet again, but suffice to say that the bilateral mastectomy would have been enough, but the nosocomial infection that required 3 more surgeries, nearly a month in the hospital, and endless antibiotics was really enough.

No fanfare, because while returning to tennis after the mastectomy and infection mess was a lot, but it’s easy compared to recovering from the DIEP surgery. Good thing today is just a 1-hour drill, which is the perfect venue for me to see if I remember how to swing that racquet. I’m not giddy with excitement like I was last fall, because the cautious side of me is bracing for disappointment. For this return to not quite work out for me. Although I’ve been cleared, there’s no guarantee that my body is on the same schedule as my heart & mind, and I may well be met with resistance from the battle-weary bod.

See, this is one of the unseen side effects of a cancer diagnosis. Even after getting through all the hard stuff–comprehending the devastating news of diagnosis, all the gut-wrenching decisions, the surgeries & hospitalizations, the never-ending antibiotics & their grueling side effects, the cornucopia of doctors’ appointments, the worry & fear & fatigue–I’m still shell-shocked enough to automatically look for disaster. Although the 267 days of oral antibiotics worked and my infection is cured, there’s still a little part of me that assumes the worst. I can’t even remember the last time my skin opened up to let infected fluid escape, yet I still think I feel it a couple of times a week. It’s PTSD for patients.

So my job today is to say screw the PTSD. Can the shell-shocked tendencies. Bust right through the doubt. Ignore the niggling little voice that asks if I’m sure I want to do this.

Hell yes, I want to do this. More than anything else, tennis to mean means I’ve healed. More than being able to go about my busy little life, more than getting back into the gym, more than being able to lift my arms enough and twist my core enough to dress myself. Tennis means I did it. It’s over.

My friend who also battled the breast cancer beast has dusted off her racquet and returned to the game we both love. While I’m unhappy with the unfinished parts of my reconstruction and she’s unhappy with her not-yet-grown-back-in hair, we’re getting back in the game.

I’m going to take the advice of tennis legend Billie Jean King in my post-cancer tennis strategy:

“Ladies, here’s a hint.  If you’re up against a girl with big boobs, bring her to the net and make her hit backhand volleys.  That’s the hardest shot for the well-endowed.”

My friend and I are both differently-endowed than we were before breast cancer came to call, but we survived that unwelcome visit and are ready to tear it up on the court. Even if we both get our asses handed to us in match play, I suspect we’ll both be smiling. Happy to be there, happy to have a racquet in hand, happy to be alive.


The SCAR Project

duggal.com

Listen up, people: this is really important.

If you’re not familiar with The SCAR Project, I am happy to introduce you. I’ll be honest: there are some photos that may disturb you, because the photos show “large-scale portraits of young breast cancer survivors,” and present a “raw, unflinching face of early onset breast cancer while paying tribute to the courage and spirit of so many brave young women,” according to the project’s website. While the photos are indeed raw and unflinching themselves, I challenge you to man up and look at them anyway. They’re very tastefully done, no train-wreck gore or gratuitously scary stuff. Get past the cover model who is visibly pregnant and sporting a single-mastectomy scar on her chest. Her belly is beautiful, as it contains a newly forming life, and her scar is a badge of honor.

The project’s acronym stands for “Surviving Cancer. Absolute Reality.”

I like that little double entendre. Well, let’s be honest: I like most double entendres, but this one in particular speaks to me. As does the project’s media slogan: “Breast Cancer Is Not a Pink Ribbon.”

And how.

one of the many "pink ribbon" cards I've received

I’m all for the pink-it-up attitude that the Susan G Komen for the Cure and other organizations espouse. While I think it’s a little weird to see the pink ribbon and “awareness campaign” on products ranging from golf balls to toilet paper and all parts in between, and while I question how much all this awareness really does to actually fight the dreaded disease, I am grateful that Suzy Goodman Komen was the kind of woman who wanted to make a difference, even though she would not be a survivor. Because of her and her family, most notably her sister Nancy G. Brinker, breast cancer went from a shameful secret shrouded in secrecy to the glamour disease du jour.

I’m not interested in getting into the debate in the BC community over how much good the Komen organization has actually done. I completely understand the frustration felt by women with Stage IV BC over the lack of research done on their end of this vicious disease. According to Brinker’s book, Promise Me, the Komen organization has contributed some $1.5 billion to research and community programs, but it seems that precious little reaches the metastatic BC demographic.  I understand, and I struggle to see the connection between awareness and finding a cure. Regardless of funds and allocation, however, I’m grateful that in the 25+ years that Komen has been around, the global breast cancer movement has worked to eradicate the shame that used to accompany a BC diagnosis.  The SCAR Project is following suit.

As I’ve mentioned before, Bestselling author Barbara Delinsky also lost a loved one to BC. Delinsky was 8 years old when her mom died from BC, yet according to her book Uplift, she was in her teens before she learned that her mom had breast cancer, and it was years before her dad could say cancer, and even longer before he could say breast.

One of the women featured in Uplift, Elinor Farber, lost her mom to BC, too, and said when her mom was diagnosed 45 years ago, there were no mammograms, and mastectomies were just short of a butchering. Farber reports that her mom lived more than 30 years after her surgery, but never once spoke of her condition. “Mom endured everything without the support of friends and neighbors, who were not told. My sister and I were both told of my mom’s condition in hushed tones, and we were sworn to secrecy.”

We’ve come a long way.

But not until The SCAR Project have people been forced to see–I mean really see–the impact of breast cancer.

The project focuses on women aged 18 to 35, a demographic in the breast cancer community that is not well represented. Although it’s estimated that more than 100,00 women younger than 40 will be diagnosed with BC this year, and although BC is the #1 cause of death of women aged 18 to 40, the younger members of the pink ribbon club don’t get a lot of press.

When I was diagnosed last April at the tender young age of 40, I quickly learned just how little press we young-uns get. All of the literature I received from my darling breast surgeon featured grey-haired grannies. Not a single image in any literature showed anyone within 20 years of my age. My darling breast surgeon, who is younger than me, agreed that the lit needs a major overhaul, and she teased me about being the one to get the ball rolling. Sure thing. Now that I’m finally off the antibiotics and over the post-mastectomy infection, I’m on it.

Sadly, I’m too old for The SCAR Project; otherwise, I would sign up right this second to be a SCAR model. Well, not right this second but after living in the gym for several months and eating nothing but salad. No dressing. Kidding. After countless doctor visits and multiple hospital stays, I’ve long shed any modesty about disrobing, and I’ve been known to show my scars in all their glory to anyone who asks. The nurses in my various doctors’ offices don’t even offer me the paper gown anymore, because they know I won’t use it.  Save a tree, people; I’m over it. In fact, I may contact photographer David Jay and tell him I’m overage but have an abundance of scars. Way more than the women on the SCAR website. No that it’s a contest or anything.

dailymaverick,.com

Like Komen, the initial goal of The SCAR Project was to raise awareness and money. But it became so much more. Jay explains that he was not prepared for something so beautiful:

“For these young women, having their portrait taken seems to represent their personal victory over this terrifying disease. It helps them reclaim their sexuality, identity, and power after having been robbed of such an important part of it. Through these simple pictures, they seem to gain some acceptance of what has happened to them, and the strength to move forward with pride.”

Yeah! Go girls! This model from The SCAR Project looks like the epitome of a fierce survivor. While no doubt she’s battle-weary and has seen things and faced trials she never thought possible, the mere fact that she participated in The SCAR Project tells me that she is indeed moving forward with pride.

lipmag.com

I’m not quite there yet, personally, with reclaiming all that has been lost to my cancer, but after seeing the women in The SCAR Project, I’m a whole lot closer.


One year ago today

Y’all know I’m a milestone-observing kind of girl. I’ve written about my cancer-versary, about a revelation, about week-old recollections after The Big Dig, aka my reconstruction, and returning to the tennis court after a long absence full of longing.

I’ve written about the anniversary of my sweet mama leaving this earth. That was early on in my blogging, and I hadn’t mastered the art of inserting photos. The photos of her are woefully displayed, and in my free time (!) I need to go back and fix them. She deserves better.

I’ve also observed the end of the worst year of my life. “Don’t let the door hit ya” was my message to 2010 as it went out like a lion. A mean, underfed, on-the-hunt-for-victims lion. Almost halfway through 2011 and I’m happy to say it’s turning out to be a much better year. Course, we didn’t have far to go to make it better than its predecessor.

Back to the current milestone. One year ago today, I said bye-bye to my breasts and was the lucky recipient of a flat–but cancer-free–chest. This was me, this time last year. On this very day (although it wasn’t a Friday, it was May 13th. Having a bilateral mastectomy on Friday the 13th would be cruel).

Trevor snapped this photo of me waiting for my surgery, in the holding pen before moving to a pre-op room. My brain was swirling with lots of thoughts, too many thoughts, and I was likely firing off a quick email to our BFF Ed with some last-minute kid-wrangling instructions. Notice the pink notebook in my bag: my cancer book, full of pathology reports, doctors’  notes, research, and bills. Bills, bills, and more bills. I think the current estimate of the cost of my last year medically is in the range of $260,000. And we’re not done spending yet.

One year ago today, I wish we’d thought to take a close-up shot of my chest instead of the deep wrinkle snaking across my forehead. My chest would never be the same, and would become a major battleground–and that was after the mastectomy. If I’d seen that pic before going under, I would have asked Dr Dempsey, breast surgeon extraordinnaire, to give me some Botox while she was in there. Yikes.

I didn’t know what to expect from the surgery, other than the basics. With subsequent surgeries, I’ve learned that actual procedures are available for viewing on youtube and I’ve watched a few. Gross. But amazing.

All I knew, really, was that I had breast cancer and I wanted it gone. I could have had a lumpectomy, but chose the slash-and-burn option instead. I’m not a half-measure kind of girl, and the idea of just taking a part of the infected breast instead of the whole thing wasn’t anything I ever seriously entertained. Slash-and-burn meant taking both breasts, even though the cancer was only detected in the right one. Only. Ha! Good thing I lost the pair, because the post-mastectomy pathology showed the left one had some problems, too. If you can call an area 5 cm in diameter full of cancerous junk a problem. I can, and I did. Little did I know then, one year ago today, that pretty much anything that could go wrong with my post-surgery self would go wrong. As my nurse practitioner friend Laura says, “Your case certainly has not been textbook.” Truer words were never spoken, but we didn’t know that one year ago today.

Because there were only 3 weeks between my diagnosis and the mastectomy, and because most of that time was consumed with tests, tests, and more tests, there wasn’t a lot of time for freaking out or being scared or crying about my fate. Not that I would have done any of those things anyway. There was a problem, and we were going to fix it. ‘Nuff said. I had a great team–breast surgeon, plastic surgeon, and oncologist– and was in a nationally ranked and highly acclaimed hospital. Course, I’d end up adding a kick-ass infectious disease team, home-health care nurse, a beloved lymphedema specialist, and wound specialists to my team before it was all said & done.

Dr Grimes, my hero

Tammy Sweed, I adore you!

The week before surgery, Payton turned 11

and Macy & I pampered ourselves with a Chinese foot massage.

I squeezed in as much time as I could with my girls

I didn’t know it would be a while before I did anything like this with my favorite girl.

Going into surgery one year ago today, I had no idea that I’d end up spending nearly a month more in the hospital and undergo 3 more surgeries; minor surgeries compared with the mastectomy, and of course reconstruction was way off in the distance, with even more days in the hospital. I had no idea how much I’d miss my kids while hospitalized

and my dogs (and their friends).

I had no idea how many times I’d need the special parking place.

I had no idea how much infinite kindness my friends would bestow upon me. We were on the receiving end of many, many meals delivered to our house, a kindness for which I’m so grateful. The rides to & from my  kids’ activities helped more than I could ever guess. The sleepovers and outings that my mommy friends provided kept my kids’ life normal when everything else around them was off-the-charts abnormal.

My cousin Teri’s hubby Tom made me more than one coconut cream pie. I ate a lot of this

but not nearly enough of this

Keith’s crab towers were chock-full of healing properties.

As was this:

Yes, lots of champagne eased the way from being an average, suburban at-home mom to becoming a statistic. From regular woman to cancer vixen. From got-it-together overachiever to at the beast’s mercy. And my bubbly companion continues to ease the way, from cancer victim to cancer survivor. Cheers to that.

A week after surgery, I began to feel a bit more human and was blown away by my little girl wearing a pink ribbon on her shirt–all her idea, BTW–to school every day.  

I was not enjoying the amount of time spent doing this:

although Pedey enjoyed every lazy minute of my recouperating.

Seeing me in jammies all the time gave Macy an idea: she could raid my jammie drawer and wear them herself. 

I’m not sure I ever got that pair back from her.

I certainly have learned a lot over the last year. Things I never knew I would have to learn, like the difference between invasive ductal carcinoma and in situ carcinomas. Like how a tumor is graded to determine the stage of the cancer. Like cure rate statistics and recurrence stats. Like how fine a line there is between the science of medicine and the art of medicine. Like how fighting a wily infection could be even worse than fighting cancer.

The crash course in all things infection-related was a big education. A very big, most unwanted education. My biggest lesson in this arena is how many unknowns exist. I wanted to know when, where, how, and why I got this infection. No one knows for sure. I wanted to know why it took so long to diagnose it, and why so many drugs have to be involved. I learned that my oncologist could have me all my drugs delivered to my doorstep via UPS. I learned to love vanocmycin and to depend on probiotics. I learned to eat breakfast as soon as I got up, hungry or not, because I needed to time the antibiotics right so they hit an empty stomach. I learned that morning sickness-style nausea doesn’t go away as the morning changes to afternoon and then to evening. I learned that there was nothing, not one single thing, I could put in my stomach to ease that awful nausea. I learned that washing those drugs down with alcohol doesn’t make me feel worse; that in fact it made me feel a whole lot better. I learned to develop a schedule and a rhythm to taking my antibiotics every 12 hours for 267 days. 

I learned that “We’re discontinuing the antibiotics” are the sweetest words I’ve heard in a long time. I’ve learned about the complete and utter relief of dumping my remaining oral abx out, because I don’t need them anymore.

That’s the tip of the iceburg, or what my friend Michele would call “a booger’s worth” of the practical things I’ve learned. The topical aspects of changing one’s status from normal person to cancer patient. Then there’s the other side of it.

There’s the stuff  I’ve learned in the last year about the unquantifiable side of a serious illness. The depth of inner strength required to get through something like this. The well of emotion that accompanies the clinical stuff. The patience and fortitude I didn’t know I had (although I’m still working on the patience part). The measure of gratitude toward the people who’ve helped along the way. The unbridled joy of making new friends in the midst of a shitty situation. The passion for writing, long dormant in the day-to-day of child-rearing, and the love of blogging. The understanding that my doctors are just regular people under those scrubs & white coats, and while they’re full of knowledge, there’s a whole ‘nother side of unknown things for which they make an educated guess and hope for the best. And, I have to admit, how much fun I’ve had getting to know these people in the white coats.

 

While being diagnosed with breast cancer at age 40 certainly does suck, I’m lucky that I made the decision one year ago to not let that diagnosis define me or impede me living my life. There certainly were times in which I was miserable from surgery and infection, and down in the dumps about my limited capabilities during recovery. There were also times over the last year in which I thought for a second I can’t take any more–not one drop more of bad luck, rotten news, and beastly complications. But those times didn’t last long and they did not prevail. Cancer did not prevail. Not over me. No way. Nuh uh. That’s perhaps the most important thing I learned over the last year.


This little piggy…

I know I teased you yesterday by mentioning the new, custom logo for this little blog but not unveiling it until now. I’d say I’m sorry but it would be insincere. There are so few things over which I have control on this “cancer journey,” so when I can control something, like the timing of an unveiling, I will do it and do it unabashedly.

But now, without further ado, I give you the official logo of The Pink Underbelly. 

There’s a lot of meaning contained in this little piggy. It’s a visual representation of the long & winding road that is my “cancer journey.”

The pig carries weight because it’s pink, the international visual cue of breast cancer. But more importantly, because pigs are very popular and prevalent animals in our house. Macy has loved pigs since a very young age and has fueled that love affair for all of her 9 years. Most little girls love horses or kittens or teddy bears, but my independent-thinking, devil-may-care girl marches to her own beat (usually loud and heavy-metalish. No Justin Bieber or Miley Cyrus for her). Her love of pigs is so all-encompassing that several friends of mine have presented her with pig trinkets, from pens to tiny flashlights to coffee mugs, that they’ve seen out & about while doing their daily work or running errands, and when they see a pig, they think of Macy. Love that.

David, my art consultant for this little blog, put a lot of thought into the pig’s tattoos. Since he did the heavy lifting, he should get to explain it:

“The angel wings are for Barb (cuz I believe in them), but I also added a MOM heart (cuz you don’t).  The USDA bacteria free logo is to celebrate your being taken off antibiotics.  The breast cancer awareness ribbon is frayed on the ends to represent your struggle.  The barbed wire (also a Barb reference) is just to be a bad-ass.  The slope-intercept formula, I added for sentimental reasons.”

Editor’s note: Barb is my mom’s name, and David knew her before cancer snatched her away from us and so callously extinguished the bright light that she was. Anyone who knew her loved her, and David is no exception. That he chose to honor her makes my sad heart smile a little, because it’s just so stinkin’ unfair that she’s not here with  me, especially now that I’m in the winner’s circle after the brutal battle that was Nancy vs. Breast Cancer, and then because one brutal battle wasn’t enough, Nancy vs. Mycobacterium. One thing my sweet mama loved was a party, and being the consummate hostess-with-the-mostess, I think she would have thrown me one hell of a victory party, with enough homemade coconut cream pie for everyone.

Because I’m feeling generous, and because my mama would want it this way, I’ll share her coconut cream pie recipe. If you want it, let me know. If you can figure out how to make her crust taste like she did, definitely let me know, and I will be at your house with a fork. If you need help with the slope-intercept formula, talk to David. I had a lot of trouble with that one, back in the day.