Shut up about the small stuff
Posted: May 31, 2011 Filed under: breast cancer, kids | Tags: breast cancer, cancer battle, cancer diagnosis, Don't Sweat the Small Stuff, kids dealing with mom's cancer, post-mastectomy, psychological effects of cancer, PTSD, reconstruction, recovery, Richard Carlton, survivor 7 Comments
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
Posted: May 27, 2011 Filed under: breast cancer | Tags: cancer battle, cancer diagnosis, charity navigator, frustrated with breast cancer battle, losing your breasts, mastectomy, Nancy Brinker, new boobs, Promise Me, Promise Me Perfume, psychological effects of breast cancer, Race for the Cure, reconstruction, recovery, survivor, Susan G. Komen Foundation, Suzy Goodman Komen, Wendy's, Where's the Beef? 14 CommentsIf 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
Posted: May 26, 2011 Filed under: breast cancer, cancer fatigue | Tags: breast cancer, cancer battle, champagne, clinical trials, Hodgkins Lymphoma, kids dealing with mom's cancer, MD Anderson, psychological effect of cancer, Ralph Waldo Emerson, recovery, survivor 11 Comments“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.
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.
These boots…
Posted: May 25, 2011 Filed under: breast cancer | Tags: beware of alligators, birds in a nest, breast cancer, cancer battle, cancer diagnosis, inspiration from nature, Italian cypress, psychological effect of cancer, recovery 2 Comments
I’ve been looking at this art a lot lately. Sometimes I’m more drawn to it than other times, rather like people I suppose. You know how certain friends drift in and out of your life, and your relationships have ebbs and flows — sometimes you can’t get enough of each other and talk multiple times a day, while at other times you go weeks without speaking then, if you’re lucky, pick back up right where you left off. That’s how you know a true friend, IMHO. The picking back up right where you left off part. Love that.
This little gem hangs in my bathroom, right above the light switch. Sometimes when I’m in a giant hurry, as opposed to the regular-sized hurry, I knock it clean off the wall as I grapple for the light switch, dashing to and fro through the house, delivering bundles of clean laundry, exchanging tennis shoes for flip flops, and going about my daily domestic business.
I glance at this little gem every day, sometimes more than once, and in the heat of the battle that was Nancy vs Breast Cancer in the qualifying match, then Nancy vs Mycobacterium in the main event, it made me smile. The battle was long and arduous, and any little thing that propelled me forward or gave me pause to chuckle was most welcome.
In retrospect, I see that the simple yet sassy message on my little piece of art reminded me that I had what I needed for the battles at hand. I was well-equipped with research; statistics; drug therapy information; most excellent surgeons; first-class hospital care (except for the part in which I got an infection, that is); an army of friends & family to help with kids and meals and dogs and errands; and comprehensive medical insurance to cover most of the nearly $300K I’ve racked up so far.
Inspiration comes in many forms. For some, it is found in nature. As I type this, I see the gentle motion of the lake across the street, calm waters moving peacefully just beyond the sign that says: “DANGER! Beware of Alligators.” 
As I glance upon the calm yet gator-infested water, I hear birdsong of many varieties. While the little birds that perch on the peak of our roof drive Harry the dog completely insane, I like their song and welcome their feathered presence into the hustle & bustle of my busy day.
Hearing the peep! peep! peep! of baby birds in a nest, buried high and deep in the Italian cypress trees along my back fence, made me smile and reminded me that life’s not so bad, even with cancer and infection and all that mess.
I suspect those babies have grown up and left the nest, as it happens quickly in the bird community. I haven’t heard the sweet little peeps in several weeks, nor have I seen parental bird figures flitting in and out of the cypress to care for their young. The only evidence that the fledgling family was even there is the one long string, raffia-like, that must have been used in the nest-building process. It sticks out of the cypress about 8 inches, and while I always assumed it was leftover building material, it strikes me now that perhaps the industrious nest-builders placed it there on purpose, to make it easier to find the nest from outside. The 3 cypress trees along the fence are identical in appearance, and the nest was buried deep within, not at all visible from the outside. Perhaps the momma bird told the daddy bird to leave a piece visible from the outside so they’d never have to stop for directions.
Or maybe it’s just a fluke.
So much in life is just that, a fluke.
Blog-worthy
Posted: May 24, 2011 Filed under: breast cancer, food | Tags: apocalypse, Aura Restaurant, Chef Perrier, Don Juio 1942, Howard Camping, lotus root, Orin Swift wine, prophesy, Seinfeld, sponge worthy, Veuve Clicquot, wine dinner 6 CommentsRemember the episode of Seinfeld in which Elaine faces a shortage of contraceptive sponges and has to evaluate all of her male suitors to determine whether they’re “sponge worthy?”
So is the task of this blogger. It’s been called to my attention that some people consider themselves “blog-worthy” and are not getting the press they deserve. I hope you’re reading this from Malaysia, Pete Keating. As Elaine said on the infamous sponge-worthy episode, “Run down your case for me again.”
As much as I like the idea of a gladiator-type battle to determine who among my circle of friends gets mentioned in this little blog, it’s not very practical. I am, however, open to bribes and prefer my Piper Sonoma to be brut.
The Rajah knows how that system works. In his invitation to Sunday Funday at the Martinez casa, he texted me this photo: 
A little something for me, and a little something for Trevor. The Rajah knows what his guests like. He’s hospitable like that.
So Pete, you don’t have to spring for the Veuve Clicquot to be considered blog-worthy. (But I wouldn’t complain if you did.)
I’m so glad the reverend Howard Camping’s prophesy was wrong. If the world had ended on Saturday, May 21st, as Camping predicted, I would not have had a chance to sip that lovely bubbly on Sunday, and that would have been a crying shame. Seems Camping made a mathematical error again, as he did in his 1994 prophesy. He says he didn’t have the dates “worked out as accurately as I could have” on the most recent prediction. Whew.
I’m really glad he had his dates wrong again this time. I would have hated to miss out on this scrumptious soup from the Orin Swift wine dinner at Aura last night. Chef outdid himself on this one: 
Yep, that’s a halved coconut serving as a soup bowl. It contained the most delectable concoction of Thai-spiced soup with a lobster dumpling, seen peeking out of the bottom edge of the soup. There was much debate at our table about what the wagon-wheel looking garnish was. Zucchini and cucumber were thrown out as possibilities, although I was suspicious of being able to fry a cucumber. Too much water, I’d think; the oil would sizzle and splatter all over the place. I can’t recall if it was Raymond or Marissa who suggested zucchini, and I think it was Trevor who threw out the cucumber. Keith had it right, as usual, with the winning answer: lotus root. Go figure.
I’m so glad Camping had his dates mixed up again and I lived long enough to eat that soup. Seems the real date for the apocalypse is October 21st. So get your affairs in order, people. You’ve got 5 months to prove whether you’re blog- worthy. And here’s a little note for Howard Camping:
squidoo.com
I Am Barbie
Posted: May 23, 2011 Filed under: breast cancer | Tags: amazon.com, Barbie, Barbie and body image, Barbie creator, Betty Ford and breast cancer, breast cancer, breast cancer awareness, breast prosthesis, cancer battle, feminism, I Am Barbie play, Main Street Theater, Mattel Toys, Nearly Me, New York Times, Pink Ribbon Barbie, Ruth Handler, survivor, Walter Beacham 7 Comments
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
Posted: May 20, 2011 Filed under: breast cancer, drugs, infection, tennis, Uncategorized | Tags: Arnold Schwarzenegger, battling breast cancer with a friend, Bilie Jean King, breast cancer, cancer battle, cancer diagnosis, DIEP breast reconstruction, infection, IV antibiotics, loss, mastectomy, mycobacterium, new boobs, nosocomial infection, plastic surgeon, plastic surgery, post-mastectomy, PTSD, reconstruction, recovery, survivor, tennis, tennis drills 10 CommentsToday’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
Posted: May 19, 2011 Filed under: breast cancer, cancer fatigue, infection, Surgery | Tags: "just write", Barbara Delinsky, breast cancer, cancer battle, cancer diagnosis, David Jay photographer, infectious disease, Nancy K Brinker, new boobs, pink ribbons, plastic surgery, post-mastectomy, Promise Me book, Race for the Cure, reconstruction, recovery, survivor, Susan G Komen, The SCAR Project, Uplift, Wordpress, young cancer patients 20 Comments
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.
Art with attitude
Posted: May 19, 2011 Filed under: breast cancer, kids | Tags: closure, extreme couponing, funeral attire, glioblastoma, Greek Orthodox funeral, grief, hate cancer, missing mom, Navy Seals, Osama bin laden, psychological effect of cancer, snarky artwork, tiropitas 4 Comments
I saw this artwork somewhere, don’t recall where, and its combative honesty spoke to me.
Big surprise.
As I prepared for Aunt Sophia’s funeral yesterday, thoughts of her sluiced through my brain, like the edge of the ocean lapping at my bare feet.
She would like this artwork. 
I know, I know, artwork like this isn’t everyone’s cup of tea. I like it, but don’t want it plastered all over my house. I do have this in my bathroom, though:
I find it helpful as I go about my daily ablutions, especially on days like yesterday as I made myself presentable for an event I dreaded attending.
No one likes going to funerals. Well, if there are people who do, I don’t get it. There probably are people who like it. If there are “extreme couponers” willing to spend hours preparing for and doing their grocery shopping, I guess it’s possible that there are people who like going to funerals. Yes, I can see how some people need closure, one of the most overused words in the English language. Ok, I can see how some people find comfort in the ritual that envelopes saying that final good-bye to a loved one. I also can see how some people enjoy the socializing that occurs before and after, in which people from near and far come together for a sad and solemn occasion.
But wouldn’t it be nice if we were spending time, good quality time, with our loved one, instead of saying good-bye to them?
I definitely needed an extra surge of power to prepare for Sophia’s funeral. And if that surge comes from a snarky piece of art in my bathroom, I’ll take it. In addition to facing my own demons of funeral-memory-overload from my mom’s event in October 2005, I also had the momentous task of getting my dress-clothes-hating son kitted out in appropriate funeral attire. Not that this task was on par with the Navy Seals taking down Osama bin Laden, by any means, but it was complicated and fraught with peril.
There were multiple-stage negotiations, some of which turned hostile; trial runs and practice fittings; surveillance to be done, and more than one recon mission to procure the necessary supplies to make this task a success.
With supplies gathered from multiple trips between our house and Amy’s house and two trips to Target and with fittings complete despite tricky buttons, we were good to go. My boy had the dress clothes he needed for two occasions. Back-to-back dressing up was torture for him, but like any good soldier, he dug deep and found the resources to stay strong and carry on.
He noted that Aunt Sophia was one of the few people on this Earth for whom he would subject himself to the torture that is dressing up. Not once, but twice, and not spaced out over the passage of time but one day right after the other.
He didn’t want to, but he did it. When I commented that while I know he hates it, he actually looked quite nice, his reply was “Your opinion.”
Ooooooo-k.
Back away slowly from the crazy boy.
As we saw our relatives gathered at the funeral home and then again at the church, I murmured, “Don’t comment on his outfit. Pretend everything is normal.” His smartened-up look was duly noted but not commented upon, and peace was restored in our little kingdom.
The memorial service the night before the funeral was sad, very sad. But good. Lots of reminders from the priest to remember the good times, to not let our sadness override our happy memories. A whole lot of talk about Sophia being in a better place. While I can’t deny that her being free from the horrors of a brain tumor is a good thing, the “better place” idea is cold comfort to me.
I certainly don’t want her to still be here, suffering and unable to communicate, a prisoner in her uncooperative body. I most definitely don’t want her to be subjected to living a life devoid of independence, something so very important to her. I don’t even want her to have to live in a skilled nursing home instead of her own neat & tidy, cozy home that was so much a part of her.
What I want is for her to still be here, healthy and vibrant, with no trace of glioblastoma or any other disease. What I want is to be sitting at her kitchen table, watching her fold tiropitas as if it’s the easiest thing in the world (and knowing that I’ll be going home with some of those little yummies). What I want is to be in her pool, watching the delight on her face as she presents my kids with their own individual pool floats: a huge, inflated baseball glove for Payton and a hibiscus-flower decorated inner tube for Macy. What I want is to walk into her cool, dark garage, with the musty smell I remember from childhood, to grab a popsicle from the deep freeze. What I want is to be calling her on the phone to tell her we’re having a family party, after the kiddie party, for one of my kids’ birthdays, and to listen to hear volunteer to make the cake. What I want is to see her walk through my door and to hear her say, “Hi, Nance.”
What I want, I guess, is to stop time. To freeze our lively interaction. To halt the passage of time and the acquiring of diseases that rob us of our health, our independence, and our lifestyles.
And while I’m at it, I sure would like to have the same thing for my sweet mama. To have her sitting next to me at Sophia’s table, assuring me that folding the perfect tiropita is easy. Just pinch and seal and brush with melted butter, and the filling won’t leak out during baking. To have her in the pool with my kids and me, mediating their squabble over whose turn it is with the blue pool noodle. To be grabbing her a Diet Coke from the fridge in the musty garage. To hear her voice on the phone, even if it’s the 11th time she’s called me today. To know that she’ll be at the family after-party, scurrying around my kitchen and telling me how to do a task I’ve done a thousand times, but which she thinks still requires her expertise.
Is that really asking so much?
Apparently so.
I get by with a little help from my friends
Posted: May 17, 2011 Filed under: breast cancer, food, kids | Tags: Ashton Kucher, Bill Murray, breast cancer, cancer diagnosis, Chevy Chase, family, fighting with kids over what to wear, Gap Kids, J Crew, J Crew kids, kids, kids' clothes, Photoshop, Sophia Katopodis 6 CommentsMy friend Amy Hoover, who you “know” from the blog, is a great cook (she’s from Louisiana, after all), and she fed my dad when he was here for The Big Dig. When he told her that I ususally put some leftovers in the freezer for him along the way so I can send him home w a care package, guess what she did? Brought leftovers, which are in the freezer for him as we speak. Homemade spaghetti sauce, crawfish etouffe, Cajun chowder and who knows what else await Dad in the freezer, and he’ll live off her goodwill for quite some time. Good friend.
When I realized I would need dress clothes for Payton for Sophia’s funeral (he wears NOTHING but t-shirts & Nike shorts), Amy, who has 3 boys, brought over a pile of clothes — several dress shirts, 2 suits, dress pants, a bag of ties & 3 pairs of dress shoes.
Ties and belts, too. Those Hoover boys are some sharp-dressed fellas.
Having a kid who is so averse to dress clothes seems like something out of a movie — a bad movie, probably one starring Chevy Chase or Bill Murray in their heydays, or maybe Ashton Kucher nowadays. Somebody sweet but bumbling, clueless as to why societal conventions like dress clothes should matter in the real world.
I’m long since over the wish that my little man would dress better. He is who he is, and one of the best things we can do as parents is recognize our kids’ innate beings and help that version flourish, rather than imposing our ideal on them.
Do I think P would make a great Gap Kids model? Uh, yeah. In fact, when he was teeny, people commented on how he should be on TV or in a magazine. I assumed they meant because he was so cute and preppy, and not because he would grow up to star in a movie about a sweet but bumbling guy with no fashion sense whatsoever.
gap.com
gap.com
J Crew would work, too. I can picture him in Crew threads for sure.
jcrew.com/boys
jcrew.com/boys
tumbler.com
He could totally pull off the Gap or J Crew look. But pulling off the look would of course require him to actually wear the clothes. And therein lies the rub.
There was a brief period of time in which I could dictate what Payton wore.
He was downright stylish for a very short time. Not sure I can say the same about my hair and goofy Christmas sweater. Wish I knew how to use Photoshop.
For a while, I could even get him to wear thematic outfits, like this get-up for a friend’s Western-themed birthday party.
Then came the cars & trucks look. Every shirt featured something with wheels. He looked pretty good, I must say.
He rocked the Hawaiian shirt look quite nicely, too. 
The last time he wore khakis and a polo might have been at his Uncle Aaron’s wedding. I was pregnant with Macy, and P was young enough to not care what he was wearing, as long as he could run and jump and stir up trouble. 
By the time Trevor graduated from business school, Payton was wising up about his wardrobe and started asserting independence. This non-baseball-themed t-shirt was a big compromise for him on this special occasion. Everyone else was all decked out in Sunday best. Including Payton. Because this little boy was discovering that a t-shirt and shorts were plenty fancy for him. 
Big sigh.
I am 100 percent sure that Aunt Sophia would not care one bit what Payton wears to her funeral services. In fact, I can almost hear her now telling me to leave the boy alone and let him be. Let him wear what he wants to wear; dress clothes don’t matter; and get him a snack–that boy looks famished. Yes, I can hear it now.
The Pink Underbelly 