Hacked off

Susan Gubar has done it again. She’s written another fantastic post for The New York Times‘s Well blog. This one is about The Scar Project, which is near and dear to my heart. Perhaps it’s a theme this week: scars, invisible and visible, and how we cancerchicks live with them for the rest of our lives. The women pictured in The Scar Project will have a long, long time to figure out how to live with those scars, as they are all under the age of 40.

Says Gubar of the young women portrayed: “The youthfulness of David Jay’s subjects wrenches me. Unlike them, I had a good span of my adult life — more than 60 years — before treatment. Their bodies stopped being their own too soon. Did their selves also stop being their own too soon? Cancer scars are physical mutilations of and on the body; but, more than that, cancer scars the psyche, the soul, the spirit. The ‘me’ before cancer is not the ‘me’ after cancer. Nor can these identities always be sutured.”

Yes, Susan Gubar, I think it’s safe to say that our bodies and our selves did indeed stop being their own too soon. I was 40 when I was diagnosed, which is old by The Scar Project standards, but I can say with certainty that it totally sucks to have been denied a good span of my adult life before cancer . It’s a drag. Because estrogen feeds my cancer, and many other varieties of breast cancer, I had to shut off the supply of that vital hormone. Being forcefully fast-forwarded into menopause also sucks. Aging on an unnatural timeframe, well ahead of my peers, does too. Having to face mortality decades in advance extracts a heavy toll on us cancerchicks. We want to live long, healthy normal lives; we want to see our children grow up. We hope that cancer doesn’t have other plans for us. Gubar touches on this, too, writing this about the young women portrayed in The Scar Project photos: “The ones that grip me stare at the photographer — at me — defiant. They want to live. I want them to live. Like Barbara Ehrenreich, David Jay seeks to unsettle a ‘public anesthetized by pink ribbons and fluffy teddy bears.’” Unsettle away, Mr Jay.

Gubar writes that “David Jay’s portraits contain images of women whose bared breasts look crumpled, concave, synthetic, reconstructed without or with reconfigured nipples, stitched horizontally or vertically or at an acute angle, lumpy, lopsided, wounded, or hacked off. Bravery resides there, beauty elsewhere.”

Wounded. Hacked off. Those descriptions apply both to my body and my soul. My body is wounded, and like my cancer-ridden breasts, I am hacked off. That this disease happens. That it takes so much from those who are so young. That it steals so much beauty, both internal and external. That the scars that remain are so upsetting, so unsettling. That this disease robs us of our youthfulness and our peace of mind. That the cancer experience changes who we are, forever, and not always in ways that are good or positive.

Gubar says that before cancer, she may have been perceived as being “ungrateful for an intact body, taking for granted organs that functioned normally, arrogant about the boons of health, ignorant of the preciousness of life.” As the old saying goes, we don’t know what we’ve got til its gone, and so too it is with cancer. Pre-cancer, I didn’t think about an intact body, fully functional organs, the boons of health and the preciousness of life the way I do now. While there are days I’m grateful to be up and about and not confined to a hospital bed or tethered to an IV pole, there are many more days in which I’m hacked off. While I take notice of air filling my lungs and appreciate my stamina at the gym, that appreciation is tempered by sadness at what I had to go through. While I am happy that I’m capable of achieving strength and fitness again after the cancer, surgeries, infection, and treatment took their pound of flesh (literally), I’m pissed that my triumph is bested by the omnipresent fear of recurrence.

I can identify with Gubar 100 percent when she says, “I remember the ‘me’ before cancer nostalgically. My earlier self could … connect with family and friends spontaneously and lavishly. At times I visualize the diagnosis as a gun aimed at a flying bird — pitched down from the sky in an instant to lie fluttering on the ground.”

Bang!

translations.deviantart.com

translations.deviantart.com

Susan Gubar ends her beautiful article by pointing out that “the young women in The Scar Project were gunned down while just trying their wings. With courage, the wounded survivors bear invisible scar tissue beneath the physical scars of cancer: the haunting lost person each might have become, had it not been for the disease. They live, but not the lives they would have led.”

Advertisements

Invisible scars

Last night, while pretending I was watching “Dance Moms” with my favorite girl, I saw this Facebook post by Stupid Dumb Breast Cancer:  “Had a ‘friend’ ask me when I was going to ‘get over this whole breast cancer thing’..ummmmm when my chest stops feeling like bricks, when my arm stops swelling, when I stop having doc appts, when I do not have to have another MRI, when there is a CURE!!!”
Shortly thereafter, while still fuming from that FB post, I came across this blog post when it was shared on Twitter by several blog friends. When more than one blog friend shares the same post, it’s worth reading. Surviving Survivorship by Cindy is most definitely worth reading.

This post about the invisible scars from cancer on Surviving Survivorship blew me away. I had to go back and read it multiple times to take it all in. Her depiction of  “the darkness of hovering clouds for the cancer survivor” are so right on, so completely telling. That darkness and the invisible scars aren’t something people like to talk about. The darkness and invisible scars fall into that category of things that make people uncomfortable. I don’t recall seeing anything in the “now that you’ve been diagnosed” literature about the darkness or the invisible scars that would come. I didn’t give  them much thought before my own diagnosis. Even watching my sweet mama die from cancer didn’t clue me into the darkness and invisible scars, because she was an all star when it came to downplaying the horror of this damned disease. Me, not so much.
Cindy writes that “invisible scars are well hidden, not often seen, but most definitely felt.”
Most definitely.

In Cindy’s words:
I wanted to post my thoughts on the topic of invisible scars, and the darkness of hovering clouds for the cancer survivor.  Throughout this document the words “cancer survivor” are loosely used, as cancer survivors are not always quite as fortunate as the words imply.  Yes, their cancer is in remission, and that is incredibly wonderful!  However … the survivor continues to spin, fearful of what may come next. 

Our visible scars are reminders of each step and path along the way of disease or injury.  The invisible scars run much deeper.  Even when the physical scar starts to fade in color and blend in with surrounding skin, the invisible scar residing just below it continues to prevail.
For me, going through major health events, resulted in a darkness like no other.  The darkness hovers, and follows me around like Charlie Brown’s friend PigPen’s cloud of dirt.  This pesky dark cloud of dirt doesn’t magically go away, or even diminish.  It’s a lifetime event.  Actually, it grows with each late-effect side-effect issue discovered.  I may be tricked into thinking it has finally subsided, but its still there, poised and ready to strike at any moment in some new unknown way.
I will say, the invisible scars can show themselves in unkind outward ways.  They are indeed ugly and evil on their own.  Holding inside the frustrations of the incredible physical changes I’ve encountered over the past 7 years takes a toll emotionally and messes with my psyche.  Occasionally, the frustration pours out, like a burst of bad energy. It’s the darkness of the cloud that never gives my pea brain a rest.

We all definitely have our day to day issues to deal with.  Work, the car, the kids, the spouse, the toilet overflowed, the dog ate the cat, etc.  A cancer survivor has those plus these invisible scars weighing them down.

I’ve been weighted down lately. The PigPen darkness has been swirling. My invisible scars are prevailing. It’s something that’s hard to understand unless you’ve been there. We’re told to think positive, be grateful, and savor what we have instead of focusing on what we don’t have. Good advice, in the abstract, but pretty worthless in the ongoing pursuit of surviving survivorship.
If I had a magic wand, I would wave it over the invisible scars (and the visible ones, too, because those suckers are ever-present and an oh-so-powerful reminder of all the evil that’s been inflicted upon the bodies of those of us in cancerland). I would wave that magic wand over the darkness that envelopes even the most intrepid cancer warrior. I would get carpal tunnel from waving that wand over the PigPen-like clouds of dust that choke out even the most persistent rays of sunshine. I would dislocate my shoulder waving that wand over the morons who ask us cancerchicks when we will “get over” our cancer. (I would likely have my magic wand privileges revoked for whacking those morons, actually. But it would be worth it.) I would tear my rotator cuff waving that magic wand over each and every resident of cancerland to rid the kingdom of darkness and invisible scars.
If only.
dark_clouds-wallpaper-1440x900

A good deed that’s not so good

On my way home from carpool #1 this morning, I was driving down my street, minding my own business, when I saw a tiny white dog running full-speed down the sidewalk. With no humans in sight, I figured this little dog had escaped. I pulled over to get a better look at the dog and to see if he had a collar and tags. He had both, so I got out of the car and called him over. He came right away and was quite friendly, and his tiny body was shivering from the 43-degree morning chill. 

 
I called the number on his name tag, after learning his name is Maxwell Chambers, and got a busy signal. With an eye on the clock and carpool #2 in mind, I put Maxwell Chambers in my car and took him to my house. 

IMG_1050He’s a friendly little guy, and was happy to drain the water bowl I set out for him. I tried his owner’s phone number a dozen more times, each time getting a busy signal. Just as Pedey the Weasel Dog was getting upset about our visitor, and just as our queen-bee piggie was considering whether this littler furball was edible, inspiration struck and I called the vet listed on Maxwell Chambers’s rabies tag.

The vet said that yes indeed Maxwell Chambers was a client of theirs, and she gave me another phone number to try for his owner. I told her that my animals were about to riot and rather than keep Maxwell Chambers while I tracked down his owner, I’d just bring him to the vet and let the owner pick him up there.

Maxwell Chambers was happy to play in my bathroom while I got ready to get out the door. IMG_1051

Clearly he’s used to being indoors. He made himself quite comfortable on the bathroom rug and tunnelled under the wet towel a certain girl left on the bathroom floor this morning.

Maxwell Chambers enjoyed co-piloting carpool #2 and was a good passenger. IMG_1052

Briefly.

He was a good passenger briefly.

After my #1 son got out of the car, Maxwell hopped into my lap, and before long, he barfed all down my shoulder, covering my seatbelt, spraying the inside of the door, and drenching the carpet in the backseat.

Gross. Really, really gross.

There wasn’t a good place to pull over for a while, so I could feel the undigested kibble he had for breakfast seeping through my sweater. The smell was less than pleasant. I scooped out as much as I could into the street as soon I pulled over, exhausting my glove-box supply of napkins and dousing myself in hand sanitizer.

When we got to the vet, I handed Maxwell Chambers over and big him adieu. I was tempted to tell the vet tech to have Mr Chambers’s owner call me to discuss the car-cleaning bill, but I did not.

I sped home and employed every cleaning technique I could: first sucking up the remaining chunks with the shop vac, then using the Shark hand-vac to get the gunk in the crevices where the driver’s seat moves back and forth on the little track. Who knew there were so many nooks & crannies in which bits of doggie barf could land? I sanitized the door, seatbelt, seat, and carpet as best I could with Lysol wipes, then finished it off with a coat of Meyers Clean Day lavender all-purpose spray to get the smell out. The final step was to Windex the windows and leave the car wide open in the garage to air out. IMG_1053

Perhaps no good deed goes unpunished, but this is ridiculous.


48

 

Apologies if you receive this post twice; something went wonky and the post disappeared. Here it is again. IMG_1031

On this day 48 years ago, an accomplished and driven schoolteacher from humble, rural beginnings married a confident, athletic Greek who was making his way in the petroleum engineering industry. The mother of the bride had passed away nearly 15 years before this wedding. The father of the groom, who had immigrated to the United States from Greece with limited funds and even less English in his vocabulary, died before being able to watch his son’s life unfold with his new bride.

That bride’s life was cut short, too. By cancer. Stupid cancer. While that bride lived to see her son and her daughter into adulthood and she welcomed and adored four grandchildren, her life–and her marriage–ended too soon. Stupid cancer.

That bride was my sweet mama, and I miss her dearly every single day. I’ve written about this topic in this space a lot. And I will continue to do so. I know my dad misses her every single day, too. He still refers to her as The Bride. In caps. I’m sure he’s missing her even more than usual today. Because today he should be celebrating with The Bride. They should be celebrating 48 years of marriage and a life full of happiness. She’d be laughing right now, recalling her simple wedding and her sweet pale yellow suit and pillbox hat. She’d be self-effacing about the number of years that have passed and the wrinkles etched in her face and the extra pounds settled around her middle. She’d be tempted to surrender the battle against the grey hair, but would continue seeking the ash-blonde color. And she’d be infusing our lives with her unique blend of meddling, hovering, and loving.

Happy anniversary, Mom.IMG_1032


Scenes from the rodeo

It’s rodeo time again. The Houston Livestock Show & Rodeo is a big deal. It’s been going on since 1932, and in those years the rodeo has raised more than $330 million for agricultural scholarships, research, and educational programs.  It’s the largest livestock show in the world, and my fair city is the epicenter for all things rodeo. For 3 weeks every spring, people come from all over this great state and from farther afield to compete in all kinds of events. From bareback riding to calf roping to showing prized animals to producing works of art, the rodeo has it all. Then there’s the carnival, with rides and the most inventive fried foods ever conceived.

The first year we went to the rodeo, my kids looked like thisrodeo 007

 

rodeo 017

and they rode carnival rides like thisrodeo 020

Now they ride rides like this,img_2640

the highest set of swings in the world,

and this. Yikes166785_4879392221273_985662432_n

Read about our trip to the rodeo last year here, in which I feared for my life on one of these carnival rides.

While they’ve gotten bigger and more adventurous, one thing hasn’t changed: they still love to see the animals at the rodeo. IMG_0981

From the show ring to the petting zoo, the animals are the main attraction. IMG_0982

Some of the kids showing animals in the ring look so young, but they handle their animals with ease.IMG_0983

This little girl handled her 250-pound pig without a backward glance. IMG_0989

We took special interest in the pigs, of course. This one has similar coloring to our little piggie, but thankfully is a different breed. If Piper ever got this big, we’d be in trouble. IMG_0985

IMG_0986This black & white beauty grabbed a nap in the midst of the festivities, while this guy was wide awake and curious. IMG_0987

How could we resist that snout??

Watching these giant pigs walking to and from the show ring was fascinating. Although they barely glanced at each other as they passed, I kept expecting them to turn and sniff each other, and maybe even scuffle, the way dogs might.

IMG_0988

Their handlers kept them on the right path by tapping them with a thin stick. We must get one of those for our wayward piggie.

These rodeo volunteers use yardsticks to keep the crowd back when it’s time for the larger animals to make their way to the show ring. IMG_0984

This pig needed to step on the scale before going to the show ring, but she wasn’t too happy about it. It took two guys to get her into the pen that holds the scale.

IMG_0990We stuck around to watch the battle, which the pig lost, and to see how much she weighed: 252 pounds!

Lots of babies are born at the rodeo each year. This little lamb made his entrance into the big wide world and was on display soon after.

IMG_0991This sweet Hereford was born just a few hours before we arrived. Mama looked proud, but tired. IMG_0995

Two litters of piglets were on display, as well. The Little Rascals were born last month and were running and playing. Their next-door neighbors, the Baconators, were a couple of weeks behind them but catching up fast. IMG_0993

 

IMG_0994_2

There were more pigs in the petting zoo, including this little cutie. IMG_0997

There’s a phenomenon in our house called The Pig Flop, in which Piper enjoys the petting so much that she literally flops on the floor all at once, in one smooth movement. My favorite girl attempted to get a Pig Flop from each piggie in the petting zoo.

Including the pregnant piggies.IMG_1002

Of course she succeeded. She is the Pig Whisperer, after all.

IMG_0996

We wondered if our little piggie would smell her rodeo relatives on us when we got home. It’s perhaps more likely that she smelled the deep-fried Snickers on Macy’s breath!

This llama won top awards for best haircut at the rodeo. IMG_0998

Not sure what that’s all about, but it was memorable.

And this little girl took the award for best t-shirt at the rodeo:IMG_0980

“If I can’t wear my boots, I ain’t goin” sums up the rodeo experience quite nicely. Lucky for her, boots are most welcome at the rodeo!


In 30 years…

Yesterday walking out of yoga with my favorite girl, I was relaxed and refreshed and thoroughly enjoying the first day of spring break. On our way to the locker room, the woman walking ahead of us turned to compliment my girl on beginning yoga at such an early age. My girl beamed in her ineffable way and chatted politely with this woman while I, the eternal germophobe, washed my hands. My girl gave me a look that said, “Seriously, Mom, the only thing you touched was your own personal yoga mat, so why are you scrubbing your hands like that?” Such is life after a nosocomial infection.

My girl and the woman discussed their most-favorite and least-favorite yoga moves, and after a short debate on the wheel and the crow, the woman told us that she’s been doing yoga for 30 years. My girl’s eyes grew wide at this, and I imagined her picturing herself 30 years from now, a most experiences and tranquil yogi.

Rather than smiling at my girl’s fledgling love for yoga, I was struck by a moment of panic and a most unwelcome thought: Will I even be alive to do yoga in 30 years?

Not to be morbid, but this is life after cancer.

When I was diagnosed at age 40, my breast surgeon told me something that has stayed with me through the worst parts of fighting this disease. Worse than facing the reality of losing both breasts as I faced a bilateral mastectomy at a time when most of my peers were reclaiming their bodies after years of childbearing and breast-feeding. While many of my friends were undergoing elective cosmetic surgery to perfect their post-baby bodies, I instead was looking at pamphlets illustrated with grey-haired grandmotherly types considering their surgery options.

My sweet breast surgeon imparted a fact about my life after cancer: that I would spend more years fighting this disease–whether actively (swallowing an estrogen-blocking pill every morning for 5 or 10 years) or inactively (chasing fears of mets from my mind on a daily basis)–than I had been alive.

And that’s the best-case scenario, in which I actually live more than 40 years with this disease rather than succumbing to its terror, as is the case of some 40,000 women in the United States every year. Of course my sweet breast surgeon was thinking best-case scenario when she told me this, and at the time I had no earthly idea how much mental havoc this disease can wreak. Had my sweet surgeon predicted or warned me that on any given day, even years after I had allegedly slain the beast that is cancer, that beast would have the power to plant such thoughts in my head as that which brought me up short yesterday after yoga, I would have likely run screaming from the room.

Would I even be alive to do yoga in 30 years?

charmedyoga.com

charmedyoga.com

What kind of thought is that??? That, my friends, is the power of cancer. It can erase the calming, centering effects of yoga in a single bound. It can swipe the joy of the beginning of spring break in one fell swoop. It can plant a seed of recurring fear and doubt with the greatest of ease.

The Social Security Administration estimates that the average life expectancy for a female in the US these days is 85. Simple math tells me that best-case I’m looking at 45 years post-cancer. More years fighting it than years I’ve been alive. Even with low recurrence-rate predictors and stellar care from top-of-their class physicians and access to always-improving tools that monitor my cancer’s efforts to reinstate itself, the recurring fear and doubt prevail. Within two minutes of bidding my yoga instructor namaste, cancer had infiltrated my thoughts and led me to wonder what my chances are of being the grey-haired grandmotherly type rolling up my yoga mat and heading to class.

charmedyoga.com

charmedyoga.com

I know, I know, we residents of cancerland are supposed to think positive. We are advised by all manner of sources–both sought-after and unsolicited–to assume the best. We are told to visualize it and believe it and it will happen. We are told that what’s meant to be will be.

But that doesn’t stop the automatic response that cancer brings. I can think positive and assume the best and visualize and believe all I want. I can employ every cancer-fighting weapon from pharmaceuticals to superfoods. I can hope and wish and pray to the anti-cancer gods. But cancer will do whatever it damn well pleases, and if it wants to come back and rudely interrupt my life, it will. If cancer wants to cut short my plans of doing yoga for the next 30 years, it won’t think twice.

That, my friends, is the power of cancer.


Quality time

My favorite girl and I had a busy weekend. While my #1 son was busy with baseball, she and I went to a baby shower for my cousin, then hit the Galleria to find a very special birthday gift, and took a trip to our favorite gourmet grocery store. While normally I’d rather open a vein than go to the Galleria on a Saturday afternoon, my girl’s unbridled enthusiasm made up for the fact that I felt like I was back in NYC with the crush of humanity all around us. No matter; my girl soaked it all in and enjoyed every minute of it. Once we left the mall and pressed on to the smaller yet still significant crowd at Central Market, my little foodie was in her element and wanted to sample every piece of produce and taste the fresh-ground cashew butter and indulge in the specialty Easter candies in the bulk bins. She wasn’t nearly as interested as I was in examining the sparkling wine section, so she forged on ahead to the condiment aisle to peruse the soy sauce (her latest food obsession).

On my own, I would have raced through the store, grumbling at those inconsiderate enough to leave their carts unattended in the middle of the aisle. I would have thrown items into my cart and crossed off my list with much haste. (I still would have lingered in the sparkling wine section, but quickly.) With my girl, however, I was reminded to slow down and savor the experience. After all, it wasn’t about filling my cart with groceries as much as it was about experiencing the store’s bounty with my fledgling foodie.

After we saw and sampled everything there was to see, we pushed our canvas-bag-laden cart to the car. Instead of collapsing in a heap in the passenger seat, my girl hauled her share of the bags from the cart into the trunk, chatting away. Once she returned the cart and buckled up, she looked at me and smiled the sweetest smile and said, “I really like spending quality time with you.” She went on to say that she doesn’t really understand when she hears girls say that their moms drive them crazy or embarrass them (although that’s probably coming). She said that just doesn’t make sense to her, because she enjoys hanging out with me.

What a compliment. And an honor. Huge. On both fronts.

A few days later, we ran errands after school, including a trip to the garden center to pick out some spring color for the front flowerbeds (those of you still bogged down in winter, feel free to curse; I would. We’ll revisit this topic in August or September or October when it’s still hot enough to break a sweat walking through the house despite the $600/month AC bill). Of course my girl wanted to help plant the flowers, too, and had ideas on how to best mix and match the different colors for maximum effect. IMG_0957

Again, I would have quickly divided up the flowers, dug too-small holes, and jammed the plants in, just to be done with it. Not my girl, though; she carefully raked the mulch away with one tool, dug the hole with another, and gently broke up the roots before gingerly placing the plant in its new home. IMG_0962As if that weren’t enough, she lovingly watered each plant with the gentlest of streams from her tiny watering can. IMG_0958

As I stopped myself from telling her to skip the watering because the sprinkler system would douse the new plants in the morning, I could feel the universe trying to tell me something. When the universe tries to tell me something, I stop my busy-body ways long enough to listen. “This,” the universe said. “This is what it’s all about.” IMG_0959

I know in my rational brain that it’s not about the destination, it’s about the journey. IMG_0961But I don’t work that way, and am continually smacking my head up against this conundrum. IMG_0962However, as my girl and I finished planting just as the sun slipped down even with the horizon, leaving trails of pink and orange to match the flowers we’d just planted, I heeded the universe’s message and stopped long enough to notice the stunning colors of the sunset. To inhale the sweet scent of the purple stock. To watch the drops of water pool and drip, one by one, from the newly-planted flowers. To appreciate that my girl wants to hang with me. To give thanks for the fact that we both find satisfaction in a job well done.

This. This is what it’s all about.

And I appreciate it. Especially in light of the fact that a couple of years ago, I struggled to imagine doing something so simple yet so satisfying with my girl. A comedy of errors post-surgery ensured that anything that could go wrong would go wrong, and a relatively simple, early-stage cancer diagnosis turned ugly with a hard-to-diagnose post-surgery infection. She was just 8 years old when I was diagnosed, and even then possessed a wisdom that belied her youth. While my #1 son fretted internally and worried about my survival rate, my girl knew that we would get through that perilous journey. With a wisdom that still belies her youth, nearly 3 years post-cancer, she reminds me that This. This is what it’s all about. Running errands together. Sampling yummy food and picking out new things to cook. Planting flowers with the utmost care. This.

As we headed back into the house last night after our gardening was done, she did it again: she told me that she’s really glad we spent that quality time together. I’m humbled and honored again. Would she say this had I not been picked in the cancer lottery? Would she appreciate the time we have together had it never been threatened? Knowing her, probably so.

We washed the dirt and grime off our hands, vying for the lion’s share of the faucet stream, laughing and chatting about which flower is the prettiest, which will grow the biggest. And this morning, as we backed down the driveway en route to school, my girl told me to stop. I figured she had forgotten something, and as I put the car in park I waited for her to leap out and run back into the house. Instead, she didn’t move.

“What did you forget?” I asked. “Nothing,” she said. “I just want to look at the flowers for a second.”

This. This is what it’s all about. IMG_0952