Everyday wonders

Driving my favorite girl to school today, my head was full of thoughts of all the things I need to get done. It’s her birthday weekend, so we have a jam-packed schedule of festivities, which means much to do before we celebrate. I was running through my mental to-do list and chatting with the birthday girl about the cookies she would hand out to her classmates on the funny monkey napkins. Our spirits were high, although I felt my inner throttle revving up, readying my body and brain to rush from one task to the next in a balls-out effort to get ‘er done. Get all of ‘er done.

This is one aspect of myself I don’t relish. I’m always in a hurry, rather impatient, and tend to rush through the journey to get to the destination. I’m not a “smell the roses along the way” kind of girl. Perhaps this is common in overachieving busy-bodies. Or in the legions of other suburban at-home moms whose work is never done in ferrying children to and fro and ensuring there are adequate provisions to keep the troops clothed and fed. Or maybe it’s just me.

Anyhoo, there I was in the car with my girl en route to school, thinking about going to Walgreens to pick up yet another prescription; hitting the grocery store for kid wine (sparkling cider) for tonight’s kid party and for crayons for my girl’s science fair project; going to the gas station to fill up and get a quick car wash, as well as scratch cards for the birthday girl (yes, gambling starts early around here, and the fact that my girl requests scratch cards for Christmas and her birthday is an insight into her wacky personality); driving my other kid to school; gathering the stuff for the party-favor goodie bags; wrapping the gifts; sweeping, mopping, dusting, and freshening the powder bath since the party guests will arrive this evening and I’m the whack-job type who thinks the house must be spic & span before guests invade; and cleaning out the twigs & leaves that fall into the back seat of my car on top-down days, since the party guests will be riding with me.

Just when I thought my full-to-the-brim brain might overtake me, the universe intervened and saved me from myself.

As we traveled down the street, we drove under a wire that stretches across the road, up high. Maybe it’s a telephone wire, or perhaps a DSL cable. I don’t know; I’ve never even noticed it before, but it traverses the street I drive up and down a thousand times a week, every week. Today as I traveled that street, a fat squirrel was dashing across the wire, doing a squirrel tight-rope act. The movement caught the eye of my girl, who spied the bushy-tailed performer through the open roof of the car. We slowed down, literally and figuratively, to watch. I slowed even more when I realized that if that squirrel fell off that wire, he’d plop right into my car. While my animal-loving girl would love that, I didn’t relish the thought of it.

With no cars behind us, we slowed to a crawl to watch the rodent acrobat scurry across the wire, high above the road. His tail bobbed in the air as he ran across that wire, and I imagined his little squirrel hands (paws?) gripping tightly. My girl wondered aloud if he was nervous or confident in his attempt to cross the road, and that naturally led to her ad-libbing a few “Why did the squirrel cross the road?” jokes. Ahh, the humor of an almost-11-year-old.

Our squirrelly performer trucked across the last length of wire, safely making it to the other side. The punchline to the “Why did the squirrel cross the road?” joke that most tickled the girl making them up was “Because he needed to scratch his butt!” The squirrel was gone, and a car approached, forcing me to move forward. As we neared the school, my girl said, “Mom, I’m sure glad we saw that squirrel on the wire. That totally made my day.” And then I realized: while the jam-packed to-do list seems so important, and completing those tasks to ensure a kick-ass birthday weekend for my favorite girl is important to me, what’s really important is noticing the moments of everyday wonders, and savoring them. The squirrel on the high-wire smacked me in the face with that realization. My girl re-affirmed it.

Much has been written, on this blog and elsewhere, about how surviving cancer can make one appreciate life even more. I will never, ever, ever say that cancer is a gift or that it’s changed my life for the better or that there is a silver lining under that dark cloud that so rudely interrupted my life with disease, infection, and worry. Never. I appreciated my life and the bounty of good things in it just fine without having to lose my breasts and a chunk of my security along with them. I lived life out loud before cancer robbed me of my belief that if you do the right things and try your best to be a good person, that bad things won’t happen. I gave thanks for the friends and family and privileges that exist in my life before this wretched disease snuck into that thankful life and dislodged my sense of me. I realized that random fate of being born in the time, place, and family I was born into was as much a player as hard work in creating this charmed life, and I knew that before cancer entered and laid waste to my body. I appreciated the little things in life, and knew in my heart that it’s those things, not a new car or a big house, that lay down a basis for a fulfilling life; I certainly didn’t need cancer to bully me into realizing this fact.

Surviving cancer and an insidious infection didn’t teach me to appreciate life’s everyday wonders. But a squirrel on a high wire sure did.

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Distance traveled

I didn’t fall off the face of the Earth. It just seems that way. The Belly is still in business; thanks for your concern.

I had every intention of sitting down for a nice, rousing blog post over the last week, but life got in the way. It tends to do that. While the days were whizzing by and I remained blog-less, several ideas for posts meandered through my brain, but because I didn’t write any of them down, they’re now a swirling mish-mash of disjointed words and unattached ideas. Probably best to just start fresh. That’s what the New Year is for, right — starting fresh?

Being an overachieving busybody, I have tons of plans rattling around in my head. Yucky but necessary plans, like cleaning out my study and purging the stuff I don’t use anymore. Like touching up my kitchen paint, which has been nicked in many places as this busy little family has gone about its business over the last few years. Like repairing the wallpaper in the powder bathroom, which has started to peel in a few spots. It’s the only wallpaper in my house and I love it: big, lush banana tree leaves. Those giant leaves wrapping around that small space makes me smile, 8 years later. Lots of projects on the to-do list in addition to the everyday hub-bub of keeping my family up and running. After a long, leisurely winter break, my kids went back to school today (a somber affair that remained heavy and dreary despite the oh-so-rare appearance of a warm Pop Tart on each kid’s plate. Yes, I am that mom — the one who deprives her kids of sugary processed pastries for breakfast. Poor babies).

Besides a fresh start and umpteen projects, the New Year brings me perspective. Before looking forward and lurching headlong into 2013, I want to take a mo to reflect back on 2012. While 2012 had its challenges, it was a far cry better than 2011; that year and the one that preceded it were pretty stinky, with a cancer diagnosis followed briskly and cruelly by a nosocomial infection that would. not. go. away. Looking back on those dark days makes me shudder.

Many parts of that “journey” remain hazy in my  mind. When I think back to that time, it’s almost as if I’m watching a movie. A really bad, really scary movie. I know that it was I who endured it, yet my brain tries to protect me from conjuring up the details. Thank you, brain. I remember bits & pieces of it all, but not the specifics. It’s not as if I’ve erased all the unpleasant memories; they’re just faded. When I go back to the month I spent in and out of the hospital because of that damn infection, I can recall the exact look of each room in each of the three different hospitals, but I can’t really remember what that time was like. I know there was a lot of hopelessness and fear, but if I had to describe it, I would fumble. If you were to ask me what it was like to undergo a bilateral mastectomy two weeks before my 41st birthday, I’m not sure I could come up with more than, “It was hard.”

If you ask me how it felt to have a wound vac attached to me 24-7 for weeks on end, my answer would be that I can’t really say. I remember how loud that damn thing was, and how cumbersome it was to lug it around. I remember my home-health nurse coming four times a week to clean the wound; I know she measured the depth, length, and width of that wound every visit, and compiled the stats in a handy chart that we used to hang on to a semblance of hope that progress was being made, that the damn thing was healing. I know she used an oversized, medical-grade Q-Tip to clean the wound, and that it was horrific enough that she recommended a xanax before each visit (for me, not her). I remember her using that giant Q-Tip to gauge how deep the wound still was, yet when I try to recall how it actually felt, I can’t. I guess that’s a good thing.

This time last year, I was trying to regain my footing as I negotiated life after cancer and that awful infection. I didn’t make any New Year’s resolutions that year, or this year. I’ve never been one to inscribe grandiose plans upon my new calendar. Perhaps it’s an effort to fly under the radar. To live a normal life. To step lightly around the sleeping beast that is cancer recurrence. To put as much time and distance as possible between then and now.

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Trapping the jumping beans

“Sometimes I have to let go and mother myself, kiss the hurts away. Tell myself that sometimes bad things just happen. But writing about it helps a lot, it scrapes it out of the dark corner, holds it up to the light and somehow heals the wound. It borders on miraculous.”

I have no idea who wrote these words. If any of y’all know, will you tell me? This quote spoke to me, though, at some point, because I wrote it down, and today as I cleared off my desk I found it. Scrawled on a scrap of paper and placed in my “I’ll get to this later” pile, the quote has lingered, waiting for me to get to it. How very patient.

I’m pretty sure I didn’t write it (although I wish I had). Perhaps it spoke to me because of the idea of having to mother myself. Being a motherless daughter, I don’t often think about mothering myself, and yet I do. Making myself go to bed when instead I want to stay up all night reading my current favorite book. Being diligent about pulling that load of shirts out of the dryer and hanging them up instead of letting them sit indefinitely in a wrinkled heap. Wiping up the spills on the stove top now, not later, before they’ve hardened into an indeterminate glob of laminated goo.

In the early days of navigating life without my sweet mama, I actively avoided any mothering that might come my way. That hole in my heart was too new, too raw to allow anyone else to even attempt to approximate any of the things my mom did. Seven years later, I still eschew any overt mothering. Somewhere along the way, though, I must have started mothering myself a bit. I certainly don’t hold out any hope that the hurts can really be kissed away, although I do tell myself often that bad things just happen. Telling myself that doesn’t help my innate desire to question, to wonder about the reason, or to pick things apart in a futile effort to figure them out. Sometimes it just is.

Writing about the things, whether the bad things or the confounding things, does help. Perhaps that’s the line that most spoke to me in the above quote. Perhaps that’s the reason I jotted the quote on a scrap of paper and put it in the pile on my desk. I’m a big believer in writing as healing, which I why I sit in front of my computer, keyboard clacking away as the words fill the screen. For me, just getting the words out of my head and the thoughts onto the screen is therapeutic.

Writing about the good stuff and the funny stuff is important, but writing about the bad stuff is even more so. Like the mothering I inevitably do for myself, writing about the bad stuff helps make it better. Somehow it purges the toxic stuff from my soul and helps filter the insomnia-inducing worries that blanket me after the lights go out and the house is quiet. No matter how much distance I try to put between myself and the cancer “experience,” those worries return. Sometimes it’s the fleeting thoughts before a routine oncology visit, and sometimes it’s a more concrete feeling. Sometimes it’s a visceral assault, like the smell of the hospital that fills my senses when I’m just visiting. Sometimes it’s a random trigger that takes me back to the heat of the battle. Regardless of the form or the impetus, the worries remain. Hence the need to write. Hence the need to read the stories of others who have walked this path. Ray Bradbury explained it perfectly:

“If you stuff yourself full of poems, essays, plays, stories, novels, films, comic strips, magazines, and music, you automatically explode every morning like Old Faithful. I have never had a dry spell in my life, mainly because I feed myself well, to the point of bursting. I wake early and hear my morning voices leaping around in my head like jumping beans. I get out of bed to trap them before they escape.”

Knowing that I can drown out the insomnia-inducing worries with the “morning voices” is sublime. It borders on miraculous.

 


I’m thankful for…

…all the usual suspects — loving family, great and true friends, a happy home, abundant sunshine, a fridge full of good things to drink.

But today I’m extra thankful for an endocrinologist who emails her newest, worried patient after the close of business the day before Thanksgiving to say, “I know you’re awaiting your biopsy results, and I know you don’t want to have to wait out the holiday weekend.”

That, my friends, is quality health care.

And the result from the needle IN MY NECK is good. Very good. The biopsy is negative.

I’m thankful.

Happy Thanksgiving, y’all.


There’s a zombie on my lawn

Much has been written, in this space and in that of countless other blogs, about the far-reaching fear of metastases. Once cancer comes to town, no matter how small the tumor or early-stage the disease, the fear of recurrence prevails. Forever. Or until it actually happens. Kinda like in the traditional wedding vows: until death do you part.

When cancer returns, you go directly to Stage IV. Don’t pass go, don’t collect $200. No matter how “good” your cancer was initially, regardless of you doing your due diligence and “catching it early,” once it returns, you. are. screwed.

I think about this. A lot. Way more than I’d like to think about it. Maybe it’s just my personality. I don’t think I’m a gloom & doom kind of girl, but my mind goes to recurrence all the time. Perhaps it’s a natural by-product of having watched my sweet mama die a nasty death from an even nastier disease. Cancer, no matter what kind, no matter what stage, is nasty, and once it infiltrates your life, it’s always lurking in the shadows, ready to pounce upon your body or mind, or both.

Cheery thoughts as we head into the Thanksgiving holiday, I know.

My recurrence fears roared to life this week. I should have been relishing the upcoming Thanksgiving holiday, my favorite holiday because it encompasses all the food & fun and none of the stress of gifts. Instead I was enduring a crash-course in thyroid issues, and in the process of seeking a second and then a third opinion for my hypothyroid, I found myself back in the ultrasound department at my favorite local hospital. My new endocrine doc ordered an ultrasound so we could have a little look-see into what is causing my thyroid to limp along like an aging marathoner at mile 25. Good thing she did: there’s some sort of party going on in my thyroid, with lots of guests: the loudest, pushiest of these guests is a 1 cm nodule on the left side of my thyroid. The size itself is not terribly worrying but its mere presence is, and especially the presence of  the “debris” it brought to the party. Debris is definitely not a good thing when it comes to nodules. At best, it raises a red flag. At worst, it can be indicative of cancer.

The thyroid gland is one of those myriad body parts for which you may not even know exactly what it does until it stops doing what it’s supposed to do. If you fall into that camp but are now curious, read this. I never thought too much about it myself, being preoccupied with my more ill-behaving body parts. What I know now is that my thyroid is lazy and shiftless. Well, maybe not shiftless; I threw that in there out of frustration. But lazy, yes. It’s an underachiever in the tradition of the slackers who populated Austin, TX, in the mid-90s, scooping ice cream at Amy’s or building delicious sub sandwiches at Thundercloud instead of  working a traditional desk job. Like the scoopers and sandwich artists, my thyroid is covered in tattoos, likes to sleep until 2 pm, and is slowly working on breaking through into the upper echelon of the indie music scene. What I want from my thyroid is not a 6-inch-long braided goatee and a knitted-in-a-Guatamalan village skull-cap but a three-piece suit and shiny shoes with a briefcase stuffed with pie charts, spreadsheets, and proposals.

We always want what we don’t have.

Because my slacker thyroid is sporting a nodule where a nodule should not be, and because I’ve got a dual-cancer-surviving history under my belt, my endocrinologist ordered a thyroid biopsy. It’s unlikely that breast cancer would metastasize to the thyroid, but …. She was kind enough to tell me that it’s not a pleasant procedure, but nothing I and a xanax can’t handle. Thank the pharmaceutical gods for xanax.

So basically a thyroid biopsy is just as you might envision: a fine-gauged needle stuck in your neck to suck out the cells and some of the debris that fill the nodule.

Yes, you read that right — a needle in the neck.

After changing into a gown and filling out the consent forms (yes, I understand what they’re about to do to me. Yes I agree to have a needle stuck in my neck. Yes, I know how an ultrasound works. Yes, I get that some of the ultrasound gel may stick to my hair. Yes, I absolve the radiologist from any responsibility for honest mistakes. Yes, I will donate my unused cells and debris to research. Yes, yes, and yes, just get it over with), it was showtime.

The room was freezing, as rooms in which horrific procedures occur tend to be. Esther, the sweet Nigerian nurse, gave me a warmed blanket, asked if I’ve had a thyroid biopsy before, and remarked on how calm I was (again, many thanks to the creators of xanax). She distracted me from the many sharp objects being placed on the metal bedside tray by chattering about her one-year-old’s upcoming birthday party with an “elegant princess” theme. She raved about the radiologist who would be sticking that needle into my neck and said he’s a sweetie, just a sweet, sweet, sweetie pie. Good information to have about the person who will be sticking a needle IN MY NECK.

In walks Dr Sweet-Sweet-Sweetie Pie to explain to procedure and to apologize for the unnatural position in which he needed me to prop my head so that he’d have full access to my neck when it came time to stick that needle in there. No prob, Dr Sweetie. Really, it’s all good.

He explained that he’d be giving me a shot of lidocaine, again IN MY NECK, to numb the area for when he would stick the real needle IN MY NECK. He said the lidocaine shot would feel like a bee sting (IN MY NECK). I can’t vouch for the validity of that, as I’ve never been stung by a bee (true story), but I hope like hell that when and if I ever am stung by a bee, it’s not IN MY NECK.

After he explained the part about the needles, he said he’d squirt the gunk he extracts onto 3 slides for a cytologist to look at under a microscope. The cytologist was in the next room, waiting for the gunky slides, so it’s all quite efficient. If on the off-chance — and it is an off-chance — the cytologist doesn’t think there’s enough gunk on the slides, Dr Sweetie Pie will plunge another needle IN MY NECK and extract more gunk. But, Dr Sweetie reiterated, that’s on the off-chance, and the vast majority of times it only takes one plunge of the needle to get enough gunk.

He took a peek with the ultrasound wand to what lies beneath and quickly located the offending nodule. “There it is, for all the world to see” was what he said about that nodule. Once the lidocaine had gone to work, he told me to hold my breath and he stuck the needle IN MY NECK. And left it there. And wiggled it around in circles to extract the cells and debris. Gross.

While I couldn’t feel outright pain, there certainly was pressure, and there was enough feeling to know that the needle was not only still IN MY NECK but also moving around. “Creepy” does not even begin to cover it. I tried going to my happy place, which I’ll be honest, is a HUGE room full of bottles of Veuve Cliquot accessible by me and only me. I tried to summon the sound of the cork popping. I tried to imagine the gentle upward swim of those tiny bubbles in my favorite glass. I tried to console myself with promises of a bottomless glass just as soon as I got home.

Instead, all I could think was that there’s a needle IN MY NECK.

This took me back to the recent days in which my kids were obsessed with Plants vs Zombies, and the theme song that rang out incessantly from the computer: There’s a zombie on your lawn. Instead, in place of zombies and lawns it was needles and my neck. Gross.

The needle-in-the-neck part seemed to go on forever, but in reality lasted just a few minutes. Out comes the needle, and Dr Sweetie Pie fills the slides with my neck gunk then whisks them next door for the cytologist to view. I lay there and thought about zombies and needles and bubbly. After a brief respite, Esther the nurse and the radiology tech whose name I didn’t catch came back into the room and started bustling around. Neither made eye contact with me, which is a dead give-away to bad news. If ever you find yourself in an exam room or a procedure room or an operating room and the medical personnel don’t make eye contact, brace yourself because bad news is a-coming.

Sure enough, in comes Dr Sweetie to say that the cytologist didn’t think there was enough gunk and he needed to go back in and get some more.

Really??

Really??

Dadgummit, just once I’d love to be the normal one. The one who’s not the exception to the rule. The one who is just like everyone else. The one who skirts complications with nary a backward glance. Apparently that’s not to be; there’s something about complications and me that just go together.

In he went with another needle IN MY NECK to get more gunk. More digging in a circular pattern to extract maximum gunkiness. I didn’t have the nerve to ask if um, there’s ever a need for a third pass. I did ask what happens to the patients who pass out from this procedure. Dr Sweetie laughed and said it’s actually a bit easier, and they’re already lying down so there’s no real risk. Again, I give thanks for xanax.

The second look from the cytologist was satisfactory, so Esther wiped the ultrasound goo off me, applied pressure to the puncture wound IN MY NECK, and applied an industrial band-aid. I was free to go.

I changed out of the gown and into my clothes without even looking to see if my hair was sticking up or to determine how red my neck was from that harrowing experience. I high-tailed it outta there and into the waiting area, where my trusty sherpa Amy and the Hubs waited. Neither seemed too squeamish by my description of the needles — plural — IN MY NECK. Like me, they’ve been through a lot and are a bit hardened to even the most atrocious medical procedure.

We paid for parking, navigated the hospital-to-parking-garage elevator system, and soon were on the road for home with time to spare before school carpool. I spent the rest of the day with an icebag on my neck and a cold beverage in my hand. The worst part is over, but now the waiting begins to see what the gunk reveals. Like a fortune told from tea leaves in the bottom of a china cup, my neck gunk has a story to tell. Fingers crossed that it’s a good story, a happy story, a for-once-just-once-in-my-life-for-the-love-of-all-things-holy an uncomplicated story.

While I wait, I’m sporting a pretty bad-ass-looking mark on my neck that could very well have come from a vampire. Maybe a creepy but kinda hot vampire who would do himself a favor by ditching that milquetoast and hanging out with a chica who can easily withstand a good jab to the neck. 

 

 

 

 


Welcome to Cancerland

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Like the 7 levels of the Candy Cane forest outlined by Buddy the Elf in the movie Elf,  there are levels in Cancerland. The levels in Cancerland aren’t nearly as fun as those in the Candy Cane forest; I’ve yet to come across anything approximating the swirly, twirly gum drops at any point along this cancer “journey.” I don’t know what the official levels in Cancerland are, or if they even exist outside of the esoteric nature of those saddled with the disease, but I suspect they are akin to the 5 stages of grief. So for now, let’s say that the 5 stages of Cancerland include utter shock upon being diagnosed; extreme pissed-off-edness at losing body parts and quality of life, coupled with the potential for losing my life itself; crippling helplessness and a total lack of control in regards to recurrence; unpredictable fear and panic at any given time; and soul-crushing depression at the “new normal” that follows a cancer “journey.”

Today I ran smack-dab into level 2, the extreme pissed-off-edness. Sometimes this level manifests in its pure form, which is flat-out anger at the wrongs done to my body & mind by cancer. But sometimes, like today, it’s a more specific form of pissed-off-edness: extreme irritability. We’re talking the worst PMS rage multiplied by a prime number, divided by the number of times the urge strikes to choke someone, subtracted from the complete absence of rationality, added to the utmost amount of self-control required to avoid screaming and spewing at anyone who’s unfortunate enough to cross my path.

When this specific phase of pissed-off-edness hits, woe be unto the person who absent-mindedly leaves their shopping cart parked in the middle of the aisle while they price-compare cans of soup. I pity the fool who on the road ahead of me who finds him/herself in the wrong lane and stops in the middle of the road instead of continuing along with the flow of traffic until able to execute a U-turn or otherwise get the hell out of my way. Too bad, so sad for the person who lingers at middle-school drop-off in the morning to wish their child a good day or to remind that child to do their best in all pursuits today. Move it or lose it, people.

Today the specific phase of pissed-off-edness reared its head and tried my patience and self-control in many ways. Allow me to set the scene: as I walked into yet another doctor’s office for yet another interminable wait to hear yet more depressing news about the new normal that follows life in Cancerland, I tripped over the uneven sidewalk. I fell on my newly-repaired knee and tore my favorite workout pants. My purse clattered to the pavement and my iPhone skittered out of my hand. My other hand, which broke my fall, became embedded with dirty gravel.

An elderly Asian man stopped to retrieve my phone and tried to help me up. I rudely shook him off, not caring that I appeared ungrateful. I muttered a terse thanks with eyes averted, head bowed. Collecting the shreds of my dignity, I hobbled into the building, trying to be grateful that my knee wasn’t bleeding (it was easy to ascertain this through my torn pants) but knowing my attempt at gratitude was futile. The elevator doors closed just as I reached them, solidifying my opinion that precious little was redeemable in this day, even though it was not yet 9 a.m., and hinting at the scent of extreme pissed-off-edness that was swirling around me, but not in a twirly gum drop kind of way.

An hour later–a full hour–I was still stuck waiting in the waiting room (has ever a more apt term existed??), captive in an uncomfortable chair and unable to escape the annoying prattle of the TV, tuned to an awful loop of medical advice, exercise tips, and pharmaceutical ads. I can now easily recite the side effects for AndroGel from memory. I’m most definitely not going to try the recipe for homemade spelt crackers the perky woman shared on the cooking segment. I exercised great restraint in not throwing something at the TV during the segment on BMI and weight-control. As the announcer droned on & on about the importance of physical exercise for overall health & well-being, I wanted to hurl expletives and yell that I’d love to be pursuing some physical exercise if I weren’t trapped in this blasted waiting room, WAITING for the doctor.

Just when I think it can’t get any worse, a woman shuffled in and sits right next to me, despite an entire row of empty seats. She alternated between conducting a loud conversation on her cell phone about her hurt feelings regarding being left out of a relative’s birthday party, and coughing violently and wetly in my direction. When I got up to move away from her and her disgusting germs, she muttered, “How rude.” Oh, that’s rich, and rife with pissed-off-edness.

An hour and a half later, I was still waiting. She was still yapping about the birthday party, and she was still coughing indiscriminately. While she yapped and coughed and the TV droned on & on, I thought about all the things I was not getting done while I sat and waited. Cue even more pissed-off-edness. This is par for the course, a normal day, another thrilling ride through Cancerland. I know this, I’ve been there before, and yet it still results in this particular brand of blood-boiling pissed-off-edness.

When the nurse finally summoned me, she apologized for keeping me waiting, and I struggled with the proper response: to say “no problem” implies that’s it’s ok, when it’s not, but to let her know that it’s not ok seems rude,especially since it’s not her fault.

As she took my blood pressure she asked for my copies of my test results/lab work. Like a whiny pupil caught without last night’s homework, I muttered that I didn’t know I was supposed to bring that. No one told me to bring that, and anyway, I wouldn’t know where to start, how to untangle that knot. Then I realized she meant my last round of blood work, which I had done a few days ago at my oncologist’s office. She offered to call his office to get the results while I wondered if I’ll have to sign a release for that. She assured me that they all “try to work together,” even though I’m guessing he’s never heard of this doc, and vice versa. What about the pages of privacy paperwork I’ve had to sign? Are those just lip service that crumbles in the interest of “working together?” These are the things I think about as I wait, and wait, and wait for the doctor.

The nurse left me to go make that phone call, and I waited some more.

I was sorely tempted to steal the In Style magazine with Gwyneth Paltrow on the cover, even though I don’t even want to read it. Just looking at her glowing good health on the cover made me mad, a feeling that only intensified as I thought about her macrobiotic vegan lifestyle. I’m jealous, I admit. Although I don’t aspire to a macrobiotic vegan lifestyle it angered me nonetheless that she practices it. I bet she never waits like this in a doctor’s office. My belief in the karma wheel stopped me from stealing the magazine out of spite–toward the long wait, toward Gwyneth’s good health, and toward her macrobiotic vegan lifestyle.

My long to-do list mocked me as I waste more time waiting, always waiting. I grew restless and bored, not to mention irritable, and found no solace in my kindle. I chided myself for not paying more attention in the 3 yoga classes I’ve attended in my lifetime, because some calming breaths and restorative chi would be great right about now. Perhaps such mindful, peaceful practices could help me ward off the pissed-off-edness monster huffing at my gate.

By the time the doctor walked through the door, 2 hours had passed and I’m exhausted from the waiting and the pissed-off-edness. I scolded myself for letting this get the better of me and reprimanded myself to be polite to the doctor, even though I want to show her my bitchy side and peel back the curtain to expose the extreme pissed-off-edness in all its raging glory.

Instead, I recited my sordid medical history since April 2010 when a lump in my right breast set off the chain of events that landed me here, in yet another doctor’s office, exhausted, bored, disgruntled, and contemplating kleptomania. I’m experienced enough and jaded enough (and pissed-off enough) to believe she will offer no solutions beyond perhaps adding another prescription drug to my burgeoning stable or perhaps patting my hand, frowning sympathetically and encouraging me to buck up while reminding me that I’ve been through an awful lot recently. I’d already decided that if she were to tell me to get used to it, that this is all part of post-cancer life, my response will be swift and premeditated: I will overturn the biohazard waste bin, kick the exam table, and maybe even hurl her stool through the window. These are my fantasies as I navigate my way through the levels of Cancerland.

Lucky for her, she did not pat my hand or rush to her prescription pad. She took copious notes on my symptoms, perhaps highlighting and flagging the extreme pissed-off-edness that lingered just under the surface of this normal conversation. She ordered yet more blood work and told me to schedule yet another appointment in a week to see what the blood work reveals. My guess is that my iron level will be low, my thyroid will be underperforming, and my level of extreme pissed-off-edness will be off the charts.

 


Good riddance!

(with thanks to David B for the always-outstanding artwork)

 


The space inside

I read a lot about breast cancer and how it affects those it strikes. Sometimes the reading is hard — like when an intrepid blogger dies from metastatic breast cancer — sometimes the reading is sad — like when a blogger pours out her heart on the topic of life and loss — but usually it’s uplifting, restorative, and comforting.

I’ve not done a good job in this space of writing about — and railing against — metastatic breast cancer, the kind that kills. MBC is every pink-ribbon girl’s biggest fear. Once that cancer leaves the breast and travels to points far afield, usually the liver, bones, and/or brain, the game changes completely. No matter what stage one begins the cancer “journey,” once the cancer spreads, it’s stage IV and incurable. Treatable, but not curable.

The stats on MBC are horrifying, both the number of women who are afflicted and the shockingly low percentage of funds allocated for research: 30 percent of women with early-stage breast cancer will develop MBC, and 90 percent of breast cancer deaths result from MBC yet only 2 percent of funds go toward research for it, according to metavivor.org. MBC is the pink elephant in the room. Or the elephant in the pink room, as the latest metavivor campaign calls it. 

I encourage you to click on this link and go to the metavivor website. There are easy ways to get involved and ensure that more funds go toward research for MBC. Each time someone likes metavivor on Facebook, a dollar goes into the research pot. Share the image above on Facebook, add another dollar. Sign up to receive emails from metavivor and add one more Benajamin. Follow metavivor on Twitter, add one more, and mention it on Twitter with the hashtag #MBCAware for one more dollar donated. The money comes from Eisai, a research-based pharmaceutical company. I don’t know how to pronounce its name, but I like what it is doing for oncology research.

I think about MBC a lot. I’ve written about it a lot. Recurrence is the scariest part of the breast cancer “journey,” IMHO, and that’s saying a lot because this “journey” is full of pitfalls, roadblocks, speed bumps, potholes, and unpleasant detours.

Yesterday I read a fantastic post about MBC by Yvonne at Consider the Lillies, and one part really stuck with me. Much of the post resonates, but this part especially, as it perfectly describes the recurrence side of the breast cancer “journey”:

“I am afraid that the cancer that was removed along with my breast, will reappear in my bones or my brain or my liver. That it will sneakily take up residence in a vital organ. So every little headache is a warning bell, every twinge in my left hip is a harbinger of disease. The series of appointments with oncologists, plastic surgeons, breast surgeons is unsettling. Scribbled in a planner, the dates remind me that my life has been forever altered by breast cancer. I suppose I am doing just fine. I’ve even been told I look just like myself, that God would never give me more than I can handle, and admonished to put my “big girl pants on.” The thing is that those tests and scans shocked me once, and I have prepared a little space inside to be shocked once again.”

I pondered this for a long while yesterday, and realized that I too have prepared a little space inside to be shocked once again. It’s one of the many hard truths about the aftermath of cancer. On one hand, surviving such an ordeal provides a zest for life, a desire to gobble up life in big, gulping bites, to live it to the fullest, in whatever form that takes. But on the other hand, it’s hard to live fearlessly and zestfully while waiting for the other shoe to drop. It’s not a question of thinking positively or hoping for the best. It goes beyond having done the homework and made the hard decisions and undergone treatments to slay the beast. One can do all of those things and still lose this game. One can do everything right, yet breast cancer recurs. That’s why we prepare that little space inside.

In her post, Yvonne calls for an online revolution about the realities of breast cancer, especially the metastatic kind. I’m in. Me and that little space inside are all in.


“awareness”

In my ongoing rant against Pinktober, I’ve asked the question many times without getting an answer: what does all the breast cancer “awareness” make us more aware of, exactly?

I ask in all seriousness. I know what I think when I see a package of paper towels all decked out in a pink-ribboned wrapper, but I’m curious about the average, non-cancer-infested person. How does breast cancer “awareness” affect those who’ve not personally been waylaid by breast cancer? If I were just some normal person, going about my daily life and I saw an ad in the window of the TGF Hair Salon advertising their “Clip for the Cure” promotion, what would my reaction be? If I were not unwillingly strapped into the pink dress, would the “squeeze a boob, save a life” bumper stickers make me want to choke someone?

When people see breast cancer “awareness” products and services, do they think, “Oh my gosh, women (and men) are suffering from and dying from this terrible disease?” Do they think, “Damn, I’m sure glad I don’t have that!” or perhaps “Why does that damned breast cancer get all the attention?” or maybe even “mmmmm, breasts” in a caveman-like tone?

Apparently there was a time, not so very long ago, in which I was some normal person, going about my daily life. I don’t recall specifically reacting to any breast cancer “awareness” messages or intentionally buying pinked-up crap because I thought it would save some unfortunate woman’s life. I doubt I gave it much thought at all. Even very recently, as I went about my daily life and scheduled my annual well-woman exam, I didn’t think much about breast cancer “awareness.” When my OB-GYN wrote out the orders for my annual mammogram and I made the appointment and I showed up on that day and I changed into a gown and I stowed my belongings in a locker with a key and I waited in that ugly gown in a freezing cold room set up to look like a spa except for the TV blaring some dumb morning show that was most definitely not relaxing, I didn’t think much about breast cancer “awareness.” (BTW, if I ever do go to a spa that has a TV blaring some dumb morning show, I will turn on my heel and walk out.)

When the mammogram tech chatted with me about how I’m young for an annual mammogram and I explained that I’ve been getting one since I was 36 because my mom died of a reproductive cancer, I didn’t think much about breast cancer “awareness.” I expected the report to come back telling me I had dense breast tissue but no changes had been detected from the last year so I was free to go live my life unscathed for another year, until my next mammogram. When it didn’t exactly turn out like that, I still didn’t think much about breast cancer “awareness.” After my last mammogram, as I waited in the freezing cold room once again with the TV still blaring some dumb morning show while the mammogram tech showed my images to the radiologist on duty, I thought not of breast cancer “awareness” but of how much longer that appointment would take because I had a long list of things to do. When instead of being told I was free to change out of the ugly gown and back into my regular clothes, I was called back into the screening room so the radiologist could get a few more images, I still didn’t think much about breast cancer “awareness.” When the radiologist suggested we do an ultrasound in addition to the mammogram, and when her gel-covered want hovered over a certain part of my right breast while she made an upsetting and not-very-well-disguised frowny face, I still didn’t think much about breast cancer “awareness.” When the frowny-faced radiologist declined to answer any of my questions about what she thought she was seeing on the ultrasound screen and when the mammo tech gently patted my shoulder, I didn’t think much about breast cancer “awareness,” beyond being “aware” that this situation had all the makings of a disaster–a really big, really bad disaster.

When my OB-GYN got the radiologist’s report and called me to say I needed to make an appointment with a breast specialist, I didn’t think much about  breast cancer “awareness.” When I called to make the appointment with the specialist and noticed that the name of her practice was Southwest Surgical Associates, I didn’t think much breast cancer “awareness” because I was busy wondering why on earth my OB-GYN had given me the number of a surgeon. When the receptionist at Southwest Surgical Associates said I needed to go ahead and schedule a biopsy, I didn’t think much about breast cancer “awareness” because my whirring brain had not quite caught up with my common sense, which would have told me to panic.

While the breast specialist injected me with lidocaine before she inserted a hollow-cored and very sharp needle into my right breast, then twisted that needle to extract a tissue sample deep within my body, I didn’t think much about breast cancer “awareness” because I was busy going to my happy place to avoid the searing pain that spread across my chest, despite the lidocaine. When the breast specialist, who at that point was just the breast specialist and not my breast specialist, double checked the coordinates on the ultrasound machine that guided her as she scooped out the tissue sample, I didn’t think much about breast cancer “awareness” because I was craning my neck trying to see what she was seeing on that screen. When she was all done and bent down to her little freezer to give me a few ice packs to stick into my bra, I didn’t think much about breast cancer “awareness” because I was wondering if the ice packs were too noticeable to stop me from running into the grocery store on my way home.

When the breast surgeon’s nurse Sharon called me a few days later to make sure I wasn’t driving before she said that the doctor needed me to “put her on my social calendar” I didn’t think much about breast cancer “awareness” because I was consumed with a feeling of dread more palpable than anything I’d ever experienced. When I (unfairly) pressed Sharon to tell me over the phone how bad it was and she back pedaled, I didn’t think much about breast cancer “awareness” because I was picking apart her every word and intonation for clues to how bad this really was.

When I drove to the breast surgeon’s office the next afternoon, I didn’t think much about breast cancer “awareness” because I was instead thinking about how I was going to get ahold of Trevor, who was out of town, to deliver the verdict before he boarded his plane. While I waited in the breast surgeon’s waiting room, I didn’t think much about breast cancer “awareness” because I was wondering whether I’d get out of there in time to go home and grab my kids then get across town–in rush hour–for my cousin’s 60th birthday celebration. When the breast specialist said that the biopsy did not look good, I wasn’t thinking about breast cancer “awareness” because I was wondering if I’d live to see my kids grow up. As the breast surgeon–who went from a breast surgeon to my breast surgeon–told me very matter-of-factly that it was indeed cancer, I didn’t think much about breast cancer “awareness” because I was focused on the pounding of my heart and the feeling of life as I knew it being replaced by a very undesirable alternative. As my breast surgeon laid out the options for ridding my body of its unwelcome visitor, I didn’t think much about breast cancer “awareness” because I was already dressing for battle. When she told me she didn’t want me to make a decision about surgery for at least 5 days, I didn’t think much about breast cancer “awareness” because my brain was full of slash-and-burn thoughts toward this cancer. When Trevor said he was ditching his business trip and catching the next plane out, I didn’t think much about breast cancer “awareness” because I was busy convincing him to stay, because if he changed his plans and aborted his trip, I could no longer operate under the (temporary) assumption that everything was ok.

While I worked the phones and manipulated my calendar to get through the myriad scans and tests required to see if this cancer had spread to other parts of my body, I didn’t think much about breast cancer “awareness” because I was still trying to make sense of the fact that at the age of 40, I was a cancer patient. As I researched oncologists and made appointments for them to review my case, I didn’t think much about breast cancer “awareness” because I was trying to wrap my head around the fact that I had a breast surgeon and an oncologist. Sitting in the oncologists’ waiting rooms, I didn’t think much about breast cancer “awareness” because I was focused on the fact that every single person in those rooms was a good 20 years older than me, and I was pleading with the powers that be to please, please, please let me live another 20 years.

As I scheduled my bilateral mastectomy, I didn’t think much about breast cancer “awareness” because I was busy counting exactly how many days there were between the surgery and the last day of school, knowing I would need as much child-free time as possible to heal. When I explained to my kids what was going on, I didn’t think much about breast cancer “awareness” because I was desperately searching for the right words to convince them that they weren’t going to watch me die from cancer they way they’d watched my mom die from it.

Healing from the surgery that left me battered, bruised, sore, scarred, and very, very flat (and not just in my chest), I didn’t think much about breast cancer “awareness” because I was busy emptying the 4 JP drains that sprung from my body and tugged and hurt like hell. As I searched in vain in my closet for something, anything, that might make me feel good about myself when I put it on, I didn’t think much about breast cancer “awareness” because I was preoccupied with wondering if I would ever get used to my new profile.

And when the post-mastectomy infection took over my body and once again turned my life upside down, I didn’t think much about breast cancer “awareness” because I was trying rather hard to stay alive. Upon being hospitalized for 9 days straight just 3 weeks after my mastectomy, I didn’t think much about breast cancer “awareness” because I was busy getting sicker and sicker while the doctors tried to keep me from going septic. When I was hospitalized a month later and then again 3 days after that hospital stay, I didn’t think much about breast cancer “awareness” because I was consumed with worry about whether the infection could be contained. As I endured 267 days of powerful antibiotics, I didn’t think much about breast cancer “awareness” because I was nauseated and utterly beaten down. When I decided to undergo DIEP reconstruction to get a blood supply to the oft-excavated and much-ruined chest wall, I didn’t think much about breast cancer “awareness” because I was planning how to endure a 5-to-7 night hospital stay, including a night in the ICU. When I left the hospital with 6 JP drains and a fragile peace between the transplanted blood vessels and their new host site, I didn’t think much about breast cancer “awareness” because I was on high alert for flap failure. As I recovered from that surgery, I didn’t think much about breast cancer “awareness” because I was, well, recovering from a pretty intense surgery. As I endured two more revision surgeries, I didn’t think much about breast cancer “awareness” because I was railing against the much-promoted fallacy that “at least you get new boobs.”

As I began life as a breast cancer survivor, I didn’t think much about breast cancer “awareness” because I was busy trying to live my life as a breast cancer survivor. With the passage of time and the re-introduction of non-cancer-related things to my life, I didn’t think much about breast cancer “awareness” because I was trying mighty hard to get back on track. As each cancerversary approached–date of diagnosis, date of mastectomy, date of infection, date of reconstruction–I didn’t think much about breast cancer “awareness” because I was thanking my lucky stars that all that was behind me. Then as I realized that “all that” may well be “behind” me but it’s always, always, always going to be a part of me, I didn’t think much about breast cancer “awareness” because I was busy feuding with the unruly monkey on my back. As thoughts of recurrence snake through my subconscious on a regular basis (say, every.single.day), I don’t think much about breast cancer “awareness” because I’m way too busy talking myself down off the ledge. When the inevitable thoughts of “why me?” enter my head, I don’t think much about breast cancer “awareness” because I’m committed to not RSVPing to that pity party. While I’m working my way back to my former state of fitness and wholeness at the gym and am surrounded by perfectly round, non-cancerfied breast implants, I don’t think much about breast cancer “awareness” because it takes all my energy to not feel really bad about my post-cancer body. As I gear up for the thrice-yearly oncology appointments and the biannual checkups with my breast surgeon, I don’t think much about breast cancer “awareness” because I’m busy, very busy, following my dear friend Amy’s advice of “don’t borrow trouble” (yet those pesky thoughts of “what if” are very determined to infiltrate my postive-thinking brain).

While I spend a whole lot of my time not thinking much about breast cancer “awareness,” the current culture of Pinktober makes it damn near impossible to not think about it, multiple times a day. Open the newspaper and see the Wacoal ad. Flip on the TV and see pink splattered all over NFL stadiums. Drive down the road and see inane bumper stickers and their infuriating references to the ta tas and the boobies and the girls. Go to the grocery store for necessities and run smack-dab into a sky-high pyramid of pink-labeled Campbells soup cans, which more than likely are chock full of BPA, which has been shown to cause cancer. While in the store, run across a woman wearing a ridiculous t-shirt and accost her for doing so. Tune in for the presidential candidates’ debate hoping to hear a reference to a plan to confront the breast cancer epidemic but come away with nothing but a watered-down homage by the First Lady and the first lady wannabe.

After all this, my question still stands: what does all the breast cancer “awareness” make us more aware of, exactly?

 

 

 

 


BRA Day, yay!

Yesterday was BRA Day. No, not wear a bra or burn a bra day but Breast Reconstruction Awareness Day. Yes, more awareness. Yay.

I didn’t write about this yesterday so I’m a day late and a dollar short. A maybe a cup size short. Or maybe just short.

I was hoping that by waiting a day, I would have something nice to write about BRA Day. I was hoping that by waiting a day, I’d be able to focus on the potential for positive transformation via reconstruction, instead of thinking ugly thoughts about how wrecked most women feel after breast cancer, whether from a lumpectomy, a single mastectomy, or a bilateral mastectomy.

My feelings about BRA Day are mixed. Rather like my cup size. Initially, I braced myself for more “awareness.” It’s no secret that I’m not a fan of all the breast cancer “awareness” out there (click here or here or here or here for the latest rants), and the month of October wears me out. Big time. However, awareness about reconstruction options is a good thing. There will be no ranting about awareness for reconstruction options. That said, do we need to declare a national BRA Day to get the reconstruction information in the hands of those who need it? Why isn’t it standard protocol for a breast surgeon to educate patients on reconstruction? Why do we need an entire day, with a national spokesperson (Jewel, the singer, who has written a special song especially for reconstruction patients)? Why must breast cancer patients/warriors/survivors be accosted every damn day in the month of October by yet another reminder of cancer?

I’m very fortunate to live in a city in which I have access to crazy-good surgeons and top-shelf medical institutions. My fabulous breast surgeon made the effort to inform me of my reconstruction options, so I knew what was on the menu. She works closely with a couple of plastic surgeons, and she makes it easy for her patients to follow the trajectory from mastectomy to reconstruction. Because I have type-A tendencies, I explored the reconstruction options, asked countless questions, and sought out information, no matter how gory. Watching youtube videos of actual surgeries, albeit with one eye shut sometimes, is de rigueur for me. I know this is not the case for all women with breast cancer. I am counting my blessings here, if one can use the word “blessings” in the context of cancer. Those of you who’ve been there know what I mean (blessing: we caught it early! reality: there was something to catch; blessing: your cancer is located in a body part that’s easily removed! reality: there’s cancer that needs to be removed, and your body will never be the same; blessing: you’re young and healthy! reality: I had both breasts cut off at the age of 40 while tending to an 8-year-old and a 10-year old; blessing: you’re so strong and able to handle this challenge! reality: the rigors of cancer never let up, no matter how strong one is; blessing: your cancer is so treatable! reality: regardless of treatability, cancer is cancer and it sucks).

But I digress.

Before I go any further, let’s be clear about one thing: while I’m not satisfied with the results of my reconstruction, my surgeons have done amazing work, and I wouldn’t have chosen a different option. Ok, so I didn’t have any other options, because I had a barely-contained, rare infection and needed to shore up the sunken, excavated chest wall with some healthy, vascularized tissue, aka The Big Dig. I showed up with a hot mess of a post-mastectomy chest wall that went from bad to worse to even worse to holy hell, can it get any worse? and my docs transformed it to pretty damn good, considering from where we started.

Before the infection ruined the post-mastectomy party, I was planning on the “standard” reconstruction, which involves having tissue expanders put in during the mastectomy surgery, then filling the expanders with saline every week or so to stretch the skin, then replacing the expanders with implants once the skin is stretched. The skin must be stretched post-mastectomy, unlike in a breast augmentation, because the skin, fat and tissue have been scooped out by the mastectomy in an effort to remove all the cancer. It’s not the same as plopping a set of implants in a regular chest. I read up on the other forms of reconstruction but didn’t study them intently because the expanders-to-implant route seemed like a done deal. Once the infection entered the scene, however, I learned a lot about the other options.

Apparently I’m in the minority of women regarding reconstruction options. According to the BRA Day website, not every woman has a stellar breast surgeon who lays out all the deets, good, bad, and ugly, and 70 percent of women undergoing breast cancer surgery are not informed of their reconstruction options, and only 23 percent of women know that there’s a wide range of reconstruction options. Scarier still: only 22 percent of women are briefed on what to expect post-reconstruction. What??? I spent a lot of time looking at before-and-after photos of the women my surgeons had operated on, at my surgeons’ insistence. I consented to become one of those before-and-after photos and am happy to know that other women can see those photos so they know what to expect.

The BRA Day website gives an overview of the different types of reconstruction, and presents the information in little sips instead of overwhelming gulps. There’s even a handy chart for comparing the pros and cons of different types of reconstruction. This could be very helpful when trying to process heaps of information, most of if scary and difficult to hear. I’ll give the BRA Day website credit for laying out the information in an easy-to-take format.

 

One thing that’s missing from the website, though, is information on The Women’s Health and Cancer Rights Act (WHCRA). There’s a reference to the cost of reconstruction on the BRA Day website, but it doesn’t mention that there’s a federal law protecting women from being denied coverage by their insurance companies. The law has been on the books since October 1998, and says that group insurance plans that cover mastectomies must also cover reconstruction.

Now, here’s what I really hate about BRA Day (you knew this was coming, right?). The name. Like so much about breast cancer, and especially breast cancer “awereness,” BRA Day tries to direct the focus away from the disease and back to the breasts. It’s sexy! It’s glamorous! It’s pink and pretty! It’s all about the boobies! Sheesh. Here we go again.

googleimages.com

I’m not crazy about the fact that BRA Day is sponsored by plastic surgeons. I happen to love and admire my plastic surgeons, and I am ever so grateful for the work they do for women who’ve been royally screwed by breast cancer. But the fact that the American Society of Plastic Surgeons and The Plastic Surgery Foundation sponsor BRA Day makes me a wee bit skeptical.

And finally, I’m bugged by the fact that BRA Day, a worthy and necessary happening, can so easily be conflated with No Bra Day, which is “celebrated” either July 9th or October 13th — or maybe both — and is neither worthy nor necessary but instead bombastic in its emphasis of breasts.

Maybe I’m just worn out by Pinktober, and maybe I’m run down by the realities of the cancer “journey,” and maybe I’m disappointed that no matter how good reconstruction is, it can never replace what’s been stolen by cancer.