12.12.12

Posted: December 12, 2012 | Author: | Filed under: breast cancer | Tags: , , , | 2 Comments

I’m big on signs. Not the roadside kind, but the superstitious kind. I like to ascribe meaning to things that are probably mere coincidence. That said, when I was awakened in the wee hours this morning by the Weasel Dog, I didn’t immediately think about the fact that today was 12/12/12. WebImg_12_12_12_I got out of bed, let the weasel outside, then quickly shooed him back inside when he started barking his fool head off. He slunk back inside and promptly hopped back into bed and made himself a cozy nest out of the covers, most of which should have been on my side of the bed. With scant covers and a fully-awake brain, I lay there, sleepless and running through the kind of thoughts my mind prefers in the middle of the night: did I remember to buy bread for my boy’s lunch? why is the tire pressure indicator light still on in my car? how many days do I have to mail packages before the real Christmas rush? and of course, the back-by-popular-demand recurring thoughts of recurrence. Some 37 minutes later, no closer to sleep despite employing the Ujjayi breath control I’ve learned in yoga class, I looked at the clock: 3:33 a.m. on 12/12/12.

Cool.

Surely there’s something auspicious about this. Surely this is a harbinger of good things to come, instead of simply yet another insomnia-fueled night.

At some point, I drifted back to sleep. That point was precariously close to the time in which I was due to wake, no doubt. When I awoke, rather than feeling like I was dragging ass, I felt buoyed by the potential in this day. I went about my usual business (packing lunch, tidying up, ferrying a not-so-thrilled middle schooler to school) and went about my usual day: some sick cardio designed to burn enough calories to provide a guilt-free happy hour, then a more-intense-than-expected yoga class, followed by errands and more tidying before heading for a visit to my orthopedic surgeon to check on my newly repaired knee, then driving both kids’ carpools, bookended by a trip to Walgreens for the never-ending prescription refills and a quick trip to the monogram place to pick up our little piggie‘s new Christmas stocking. Once home, I wrapped a few Christmas gifts and assembled the piles for mailing, found boxes suitable for shipping, packed those boxes and taped them shut. In the midst of all this productivity, I realized something important.

Nothing amazing happened at any point during this day.

Not one single out-of-this-world event took place in my life today.

It was all business as usual.

So much for being awake to witness 3:33 a.m. on 12/12/12.

Tattoos gone bad

Posted: December 11, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , | 9 Comments

My favorite girl has odd taste in TV shows. She’s a big fan of reality shows, and at first I mistakenly thought that the people on most of these shows are such idiots there’s no way that’s reality. Then I came to my senses.

Her latest reality show craving is for “Ink Masters” on Spike TV. It’s a competition among tattoo artists, and as you might expect, there’s plenty of tattoos, drama, and cussing. Why my 10-year-old is drawn to this is a mystery to me.

While home sick with a fever, sore throat, and congestion, my favorite girl was bundled up in my bed with Vicks Vapo-rub on her chest and a mug of hot tea on the nightstand. She happened upon a new tattoo show called “Tattoo Nightmares.” The premise is simple: people who have a bad tattoo come to the “Tattoo Nightmares” gurus who transform their unfortunate ink into something respectable, lovable, or maybe just bearable. The casting call for this show reads like this:

“Crazy ex-relationships, drunken dares and college nights, there are many instances where a decision made can haunt you for the rest of your life, especially if it is made permanent in ink. High school sweetheart not so sweet anymore? Sick of your husband, Steve, asking you who “John” was? Flash art lost its flare? Wish it were still the days when tribal tattoos were cool? Did you find out what that Japanese symbol on your shoulder actually means? Tramp stamp tattoo not fit the prude you? You lived the memory, you loved the ink and now it has lost its luster.Do you or someone you know have a great story as to why you want to cover up your ink? Doron Ofir Casting is looking for people who made a mistake in ink and want the chance to re-do their tattoo. Tattoo Nightmares – Waking up from 1 terrible tattoo at a time!”

I prefer my girl’s synopsis of the show: “These are some of the best tattoo artists in the country, so if your tattoo is ugly or really messed up, of course you’ll go to them.”

Of course.

Some of the bad ink that tattoo masters Big Gus, Tommy, and Jasmine have fixed include a giant pot leaf on a guy’s wrist that was (gasp!) impeding his job search and a guy who got his son’s initials scratched onto his chest while in prison, but there was a little mix-up — as there often is with prison tattoos — and the initials were transposed. I guess once the guy got out of the big house, his kid didn’t appreciate seeing his initials scrambled on dear old dad’s chest.

It’s estimated that 40 million Americans have at least one tat, so it’s not surprising that some of that ink would stink. The fix-it masters on “Tattoo Nightmares” claim they can transform an ink disaster-piece into a masterpiece. They needed to call on every ounce of their creative genius to help a girl named Erica out of her tattoo nightmare. She walked in with this:s-TATTOO-NIGHTMARE-DRUGS-121016-large640

and told a sad tale of woe about meeting a guy in a liquor store and admiring his tattoos. Apparently he offered to tattoo her, and she happily chose the Los Angeles skyline. Once her new BFF began etching the tattoo on her belly, she realized his pupils were huge and he was acting erratic. She concluded that he was on drugs and was freehanding the fine art she expected from him. She began to regret her decision to have a total stranger perform some ink art on her. I never saw that one coming.

Erica was rather emphatic about how much she hated her tattoo, which “looked like it was drawn by a child,” and she implored the “Tattoo Nightmare” experts to help her because, and I quote, “This tattoo really affects my self-esteem.” She went on to explain that she doesn’t like showing her stomach because of the terrible tattoo, and asked the experts if they have any idea how hard it is to find a cute one-piece swimsuit.

That is a problem.

I sure hope that poor Erica is lucky enough to dodge the bullet that hits nearly 300,000 women in the United States every year. If she feels bad about her body after a bad tattoo, can you imagine how she’d feel after undergoing a lumpectomy that left her breasts uneven and lumpy? Or a single mastectomy that resulted in that cursed asymmetry and the super challenge of finding bras and clothes that camouflage the difference? Or God forbid she undergoes a bilateral mastectomy, with or without reconstruction, and has to deal with the myriad fallout from that cluster-bomb.

I’m sure glad that girl got her tattoo fixed tattoo-nightmares-spike-tv-showso she can finally feel good about herself again. Thank heavens she doesn’t have to worry about that mess anymore. I bet she never did find a cute one-piece swimsuit.

PSA, from me to you. You’re welcome.

Posted: November 30, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , , , | 14 Comments

From time to time, I like to provide a public service announcement for the greater good. In other words, I learn the hard way — the expensive way — and share my lesson in hopes that some diligent reader out there in the blog-o-sphere heeds my words and avoids the painful/stressful/costly conundrums in which I tend to find myself.

Today’s PSA does not concern courteous driving (although perhaps it should, based on the overwhelming number of idiot drivers I’m surrounded by every time I venture out of my house). Today’s PSA will not address healthy living or how to fortify your liver for maximum alcohol consumption. Today’s PSA won’t even mention Pinktober, pinkwashing, or how misguided The Susan G Komen for the Cure organization has become. Today’s PSA doesn’t have anything to do with our little piggie (pity that, as she is infinitely entertaining).

Today’s PSA is all about how your health insurance company can — and likely will — try to screw you with the whole in-network/out-of-network debacle. i-534ec9e4fe422e37f2c7b9b58810e809-operation%20game

I recently had a surgery that, lo and behold, had absolutely nothing to do with breast cancer or breast reconstruction or breast reconstruction revision. How refreshing! I did my due diligence in researching a specialist who was the right guy for the job. I asked before I even made the appointment if he accepted my insurance. I provided all the nitty-gritty details insurance details before I saw the doc (ID number, group number, 800 number for claims). The benefits coordinator at the surgeon’s office reviewed everything on her checklist and assured me that we were good to go.

I saw the doc, he confirmed that the surgery was medically necessary and with just cause, and we scheduled a date. I paid my co-pay for the office visit and filled out all the paperwork, including multiple recitations of the insurance company details. I paid for my portion of the surgery well in advance. I followed all the rules (so I thought), and like a veteran soldier readying for battle, I eschewed any aspirin or blood-thinning products that can promote bleeding during surgery; I drank plenty of water the day before surgery to aid the anesthesiologist in finding a good, plump vein; I ate a healthy meal that would hopefully see me through being NPO the night before surgery; I washed the area to be sliced & diced with Hibiclens in my paranoid ritual of warding away any bacteria that might host a party in my surgerized body; I procured prescriptions in advance for the 2 antibiotics that are forever a part of my arsenal since that pesky post-mastectomy infection; I showed up before the crack of dawn on surgery day with an empty stomach and a powerful ache for my usual cup of coffee. I know the drill; been there, done that, multiple times. I got this.

Surgery was uneventful, recovery was long for my impatient self, but there were no complications.

Until I got a bill from the surgery center for more than $20,000.

20,000 clams for a surgery that was on the up-and-up and had been cleared for take-off well in advance.

Say what?

After suffering a minor heart attack, I called the surgery center and was told to take it up with my insurance company. I called my insurance company and was told to talk to the doctor’s office. I called the doctor’s office and was told to retrace my steps and start over with the surgery center. Egads.

After spinning my wheels and listening to untold atrocious Muzak songs while on hold for what seemed like forever, I remembered that my insurance company provides a patient advocate service. I’d used this service with my previous insurance company and was forever grateful for my advocate, a former RN, who checked in on me post-mastectomy and throughout the course of the year-long infection battle. She intervened when the insurance company said it didn’t want to pay for the $5,000 Oncotype test, which dissects my particular cancer to determine the best way to treat it and determine how likely it is to recur. She helped me navigate the pages upon pages of medical bills that weighed down my mailbox in the early stage of my cancer “journey.” She was very helpful.

The new insurance company could take a lesson from her. Their patient “advocate” department sucks. I can barely stand to use the word advocate in relation to them (hence the quotation marks).

The first “advocate” I dealt with on this issue did some research and determined that the surgery center my in-network doctor used is out-of-network. So my surgeon is in-network but the surgery center is not.

Huh??

Oh, and by the way, it’s my responsibility to check to be sure the surgery center is in-network.

Again I say Huh??

After all the checking and double-checking and verifying and pre-qualifying and certifying, I’m supposed to ask about the surgery center? How in the world would I even know to ask about this? What fresh hell is this?

Oh, yes indeedy, the “advocate” told me, I should have checked on that. And I should have known to check on that by reading the Standard Plan Description, a bazillion-page online document that details the ins and outs of my coverage.

While I’m grateful for the coverage I do have, I’m pretty sure my insurance company hates people like me who ring up millions of dollars in expenses for a disease they did nothing to cause and for which they actively tried to prevent. I imagine my file has a big red X on it to denote all the trouble I’ve caused and money the company has had to spend on my behalf. I’m guessing that when I call the insurance company with a question, the phone has a special ring, sorta like the Bat-phone, to alert the poor sap who answers it that I’m a raucous troublemaker who is bleeding their employer dry.

I get it. I’m not the ideal customer. But expecting me to verify that the surgery center is in-network is absurd. I don’t care what the bazillion-page online document says. If the doc is in-network and no one raises a red flag about the surgery center, then I assume I’m all clear.

A $20K bill and an instant heart attack are rather the antithesis of all clear.

And that, dear readers, is why I’m here today — to lead by example, to inform by the hard lessons learned. The word to the wise, learned expo-facto, is this: even if your doc is in-network, the surgery center may not be. Even if the doctor’s office staff have dotted every i and crossed every t, it may not be enough. Your insurance company my turn on you like a hungry dog on an alley chicken-bone and try to chew you up and spit you out. Consider yourself forewarned.

 

 

Trapping the jumping beans

Posted: November 26, 2012 | Author: | Filed under: breast cancer, cancer fatigue, literature | Tags: , , , , , , | 14 Comments

“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.

 

Medical musings

Posted: November 14, 2012 | Author: | Filed under: breast cancer, infection, Surgery | Tags: , , , , , , , , , , , , | 22 Comments

If not for the priceless blog fodder, I’d be pretty steamed after my visit to my dermatologist yesterday. I’m ever so grateful for my sense of humor, especially after last week’s doctor’s appointment on a day that went from bad to worse to are you freakin’ kidding me??

My dermatologist is lucky I have this little blog as my outlet for all the things I’m compelled to rant about, to rail against, to bitch & moan about in general.

A little background: she’s a fantastic doctor. She embodies many of the traits I’ve come to appreciate and insist upon while spending time in an exam room. She’s punctual, no-nonsense, very thorough, and more than ready with the prescription pad. Her office is staffed by all women, with nary a male doc in sight, which thrills me to my feminist bones.

She is, however, not going to win a prize for compassionate bedside manner. She is not the most compassionate doctor I’ve ever met, and this was on full display yesterday.

Perhaps it’s my bad for scheduling a first-thing-Monday-morning appointment. Maybe she had not had her RDA of caffeine. It’s possible that her personality pills had yet to kick in at that early hour. Whatever the reason, she didn’t waste any time with pleasantries. I’m cool with that, and as much as I enjoy having a comfy relationship with my health-care practitioners (especially those who see me naked), I’m good with the all-business appointment that gets me out of there and on with my life.

I sat on the paper-covered exam table in my thin paper gown precariously close to shivering — yes, people, a temperature of 52 degrees in South Texas does count as c-o-l-d, and I’m aware of the fact that 52 degrees could be considered a heat wave in some parts of the country at this time of year. I was awaiting my doctor to come in and do my annual mole check. Because I had melanoma several years ago, I take my mole checks very seriously, and as much as I hate stripping down to have every inch of my flesh examined, it’s a necessary evil and one I never skip out on.

My melanoma showed up on the inside of my right foot, on perhaps the one and only body part without any excess flesh. A number of specialists were consulted on how best to excise the infested tissue in such a delicate area. Opening the area and excising the melanoma weren’t the problem, but closing the incision was. Little did I know that that experience would be the first of many “think of the most complicated scenario” scenarios in which I would find myself. Post-mastectomy mycobacterium, anyone? In case you’re wondering, the solution to the flesh-less foot melanoma was Mohs surgery in which the surgeon used a zig-zag shaped incision to allow him to close that incision with limited flesh upon which to draw together. I have a now-faded zig-zag scar that predates Harry Potter’s lightning bolt on his forehead. I had a lightning bolt scar before lightning bolt scars were cool.

Anyhoo, back to my terse and not-so-warm-and-fuzzy dermatologist. The first thing she said when she walked into the exam room was, “What are you doing about your rosacea?”

Um, I didn’t know I had rosacea. My face gets red when I exercise and when it’s cold outside — and again, 52 degrees does count as cold — but I certainly have never had the bright red spots that I associate with rosacea. Great, now I’m feeling self-conscious.

I asked her what she thinks I should do about my rosacea (and I want extra credit for not asking it in a smart-assy way; I mean, she is the doctor, after all). She shrugged and said there aren’t any creams on the market that really help, although there are a couple in FDA testing that should be available in a few years. Meanwhile, she thinks I should go for several laser treatments, which start at $600. Out of pocket, I’m sure. She suggested that I figure out what my triggers are and avoid them. Since she didn’t go into any detail on the common triggers, I looked them up myself and found that they include stress (not gonna get away from that one anytime soon), spicy food (I do like my jalapenos and Frank’s Hot Sauce; I put that beep on everything!), hot beverages (I’m a two-cup-a-day coffee girl), sun exposure (did I mention I live in South Texas?), exertion in hot weather (again, South Texas), oral antibiotics (so I’m guessing that 267 days of two different oral abx would factor in here), and drumroll please…the last trigger for rosacea is…alcoholic beverages.

Ok, I’m out. I’ll just have to figure out a way to live with my extra-rosy cheeks because every item on the list is a factor, but the last one is a deal-breaker.

Moving along, she examined me and made notes of the normal-looking moles scattered here & there on my body. Because of being inducted into the pink ribbon club, I’ve spent plenty of time mostly naked in doctors’ offices. I’ve had my flesh poked & prodded and examined quite intently enough times that I don’t even think twice about it; in fact, I got so used to the weekly follow-up exams after the mastectomy, the multiple surgeries to rid my chest wall of the mycobacterium, and then the Big Dig reconstruction that it seemed weird to not take off my clothes at the doctor’s office.

However, none of my previous time spent in my birthday suit with a doctor prepared me for her question: Why did you have a mastectomy?

Ummmmm, because I had breast cancer?

Why else do women undergo such a physically and emotionally taxing surgery? What kind of question is that???

I wondered for a sec if I’d heard her right, then answered “Ummmmm, because I had breast cancer.”

She then wanted to know why I had a bilateral mastectomy; was the cancer in both breasts? I replied no, at least not that was detected by the multiple mammograms, bone scan, or PET scan, but that was the right decision for me. Once I heard I had breast cancer, I took a slash-and-burn approach. Good thing, too, because my post-mastectomy pathology showed a large and scary smattering of micro-mets that were likely just waiting to organize into a full-blown tumor, with a bonus of Paget Disease to boot.

She complimented my reconstruction and said it looks good, that they see a lot of it, and mine is better than most. I replied that I was very fortunate to have such skilled surgeons, yadda yadda. It never seems like the right time to mention that while my surgeons did an incredible job with my reconstruction (especially considering how wrecked my right chest wall was after the infection), it’s still reconstruction, and I was perfectly happy with my breast before I had to have them chopped off and rebuilt using another body part. It never seems appropriate to talk about how the reconstruction restored some mass to my previously scooped-out chest, but it’s not the same and will never be the same as it was before. I never feel as if the conversation will meander toward the topic of how no matter how skillful the reconstruction, there’s no way to escape the constant and visual reminder that I had cancer. I’ve yet to find a way to say that the myth of getting new boobs after breast cancer is just that, a myth. Yes, they’re new, but they’re not really boobs. I can’t ever figure out how to say that while I’m very grateful to have had access to the best docs in one of the best medical facilities in the world, and yet my reconstruction still leaves me feeling less viable. It’s certainly not considered polite chit-chat to recount how grueling the DIEP surgery is, how precarious the transplanted blood vessels are, how unbearably uncomfortable it was to be in the ICU with heaters blowing to warm those blood vessels, or how the stress of flap-failure can bring on some serious PTSD.

All that from a sincere compliment about my reconstruction. Sheesh, what a head case I’ve become.

Just as I was talking myself down from the myriad ledges my brain landed on and working hard to get back to the present moment, which was a simple mole check, my dermatologist asked another question: Where did they get the flap from for my DIEP? From my belly, I replied, and braced myself for the inevitable comment about how nice it must be to get a “free” tummy tuck. Before she could utter that platitude, I launched into a distrationary tale about how I had to gain weight to create enough belly fat to make a good flap; ha ha ha, I said, it was so funny that I had plenty of fat in my hips & thighs but not in my belly. As I lay on my belly and she examined my back, she asked why they didn’t take it from my back (because apparently there was plenty available, and she was staring right at it). Well, because I didn’t want to lose my tennis serve, I said, resisting the urge to ask for a mirror so I could see just how fat my back is.

The coup de grace, though, came when she said how lots of people probably envied me having to gain weight for the surgery, and then delivered the final crushing blow to my already-battered ego by saying, I guess you’re still working on losing that weight, huh?

Yep. Still working on it.

And I’ll keep working on it. Right after I find a new dermatologist.

I wonder if this guy is still in practice.

Welcome to Cancerland

Posted: November 8, 2012 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , , | 23 Comments

polyvore.com

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!

Posted: October 31, 2012 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , | 9 Comments

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

 

Words of wisdom for the newly diagnosed

Posted: October 29, 2012 | Author: | Filed under: breast cancer | Tags: , , , , , , , | 23 Comments

A dear friend of mine asked me to compile a list of things to know when facing a cancer diagnosis. A friend of hers is newly diagnosed with breast cancer, and so my friend turned to me for advice for her friend. While I am by no means an expert, I have walked a mile or two in the pink shoes, so here’s my list. Readers, please chime in with your advice.

1. Don’t panic. I know, easier said than done. Hearing the words “You have cancer” is scary, no doubt about it. No matter where you are in life, it’s the one thing no one wants to experience, and yet more and more people are finding their lives turned upside-down by cancer. The American Cancer Society estimates that more than 200,000 women in the United States will face a breast cancer diagnosis each year. Looking at your diagnosis, treatment, and surgery options may seem overwhelming, so break it down into manageable pieces.

2. Keep a notebook. Being a cancer patient is a full-time job, and like many other jobs, it involves a lot of paperwork. Get a 3-ring binder and some divider tabs and set up an organized system to track your pathology reports, insurance statements, notes from doctors’ appointments, and research. Ask for copies of everything from your doctors. Like it or not, you need to become your own advocate.

3. Figure out how much information you’re comfortable with and go no farther. I’m an info junkie and have a deep-seated need to know as much as I can about my cancer. I ask lots of questions at my doctor’s appointments and want to look at the ins and outs of all the issues. I watched videos on youtube of the different surgeries I would have (bilateral mastectomy with tissue expanders then DIEP reconstruction and several revisions to the reconstruction.) While a deluge of info works for me, others may prefer to work on a “need to know” basis and to take sips instead of gulps when it comes to the facts & figures of cancer. Decide what level you want and don’t venture beyond that unless you’re comfortable doing so. Also figure out how much of your story you want to share. I didn’t set out to write a blog, but found it to be the best way to update my peeps on my status. Once the cancer morphed from the star to more of a supporting role in my life, I realized that blogging about it is incredibly therapeutic for me. That’s a personal choice, however, so don’t feel that you need to broadcast your status.

4. Educate yourself so you can be the decision maker, then follow your gut. This is your show, for better or worse, and you must be the one to run it. While it’s perfectly acceptable to solicit opinions and to ask your docs what they would do if in your shoes, ultimately the decisions that must be made are yours. And there will be a lot of decisions to make. I remember wishing there was a manual for this part of the cancer “journey” that would tell me what to do. Alas, no such manual exists, so it was my job to weigh the facts when deciding on surgery and treatment. The decisions (lumpectomy vs mastectomy, chemo or no chemo, Tamoxifen for 5 years to reduce recurrence odds or roll the dice?) are big, and the stakes are high. Do your homework then trust your instincts.

5. You gotta love your doctors. Or at the very least, you gotta respect them. Even if your personalities aren’t aligned, you want to feel confident that he/she is the best at what they do. If you don’t love him/her or feel unsure about his/her abilities, keep looking. Ask for recommendations from people and doctors you trust, but then decide for yourself if it’s a good fit. One of the oncologists I visited came very highly recommended; everyone and their brother had been to this guy and respected him to the moon and back. I wasn’t crazy about him, though, and didn’t relish the idea of a long-term relationship with him. And his office was depressing — morose decor and outdated, muted colors that dragged me down every time I was there. This made me realize that I needed to look at the whole picture — does the office make me more nauseated than the proposed chemo? are the front office staff members courteous? does the waiting area suggest chaos or tranquility? what is the average time spent waiting to see the doctor? how responsive is the nursing staff to your phone calls, questions, or concerns? what system is in place in the event that my doc is unavailable? Remember that they work for you, not the other way around, and if you’re not getting the care you feel you deserve, you have every right to speak up.

6. Avail yourself of another set of ears. As much as I hated being dependent on others (see number 8 below), it was crucial to take someone with me to my doctors’ appointments. In the beginning, especially, there’s a ton of information being bandied about, and most of it is very emotionally-charged, technical, or hard to process (or maybe all 3); having someone else there to listen and take notes was a must for me. Even now, 2 1/2 years later, I still take my trusted sherpa with me to my checkups and often have to text her after the visit to confirm what the doc said about a particular issue. My brain gets very full very fast with all the cancer business, so I need my sherpa to lend me some of her brainpower, and my memory took a beating from the stress & strain of all the cancer fallout. Having someone else along to recall all the little details makes a big difference.

7. Talk openly with your kids, if you have them. They’re more observant–and resilient–than you think, and conversations about cancer will dominate your life at first, so trying to hide it from them is a bad idea. Explain it to them according to their age and ability to understand. My kids were 8 and 10 when I was diagnosed, and I told them that my doctor found a cancer in my breast that needed to be removed with surgery, but that once the surgery was over, the cancer would be gone and I would be around for a long, long time to harass and embarrass them. I said that I would need to lay down and rest a lot, but that it was temporary and once I healed, I would be ok. My 8-year-old accepted that as fact, while my 10-year-old asked repeatedly if I was sure I wasn’t going to die. He needed more reassurance, so I took him to my breast surgeon, who explained the same thing I’d explained, but hearing it from her, in a more clinical setting, reassured him.

8. Let people help. Man oh man this one was so hard for me. I don’t like depending on others, and I don’t like accepting help. However, I learned real fast that I needed to let go and get comfortable with delegating and giving orders. It was hard, hard, hard for me. But I realized that many people wanted to help, and that because they felt powerless in many ways, allowing them to bring a meal or pick up my kids allowed them to participate and made them feel good for helping. For those who are the ones wanting to help, a little piece of advice: don’t ask what you can do to help, and don’t say, “Let me know if you need anything.” I was so bamboozled by all things cancer that I didn’t know what I needed some days. Volunteer something specific, i.e., I’ll come walk your dog, or I’ll drive you to your doctor’s appointment, or I’m coming over to vacuum your house and fold your laundry.

9. Nix the pity party. Another great piece of advice from my amazing breast surgeon. She allowed that there would be days in which I didn’t want to get out of bed, but she put a time-limit on it. She gave me 3 days of wallowing, and said if I felt like I needed more, to come see her and we’d talk. It’s tempting to wonder, and even ask, Why me? But the answer inevitably will be Who knows? so ya might as well get up and get on with it.

10. Limit your exposure to anyone in your life who is negative or not supportive. Trust me, people will come out of the woodwork when they hear through the grapevine that you “won” the cancer lottery. You will likely hear all manner of advice and anecdotes, most of which are neither helpful nor amusing. Also trust me that you do not need to hear about how your next-door neighbor’s brother’s boss’s wife had the same kind of cancer you’ve been diagnosed with, and she was sick as a dog and bald as an old man all through chemo and then died a year later. I repeat: you do not need to hear this kind of talk. Distance yourself from anyone who brings that kind of junk into your yard. I had to tell a few people flat-out that their diarrhea of the mouth was not helping me and that if they couldn’t think of something constructive to say or something banal upon which to comment, they could just keep on walking. You will learn who your real friends are, you will likely make some new friends, and you may even find yourself outgrowing some friendships along the way. All of this is ok. Don’t be surprised if you have friends who can’t be bothered to listen to you vent or who are afraid that your bad luck will bleed over onto them. Don’t be surprised if you have a friend who backs out of a commitment to help you in your cancer “journey.” The sad truth is some people are fair-weather friends, and cancer can be a blustery wind that uproots the seeds of friendship. The good news is that cancer can also bring people into your life just when you need them most. Two of my dearest friends are those I was merely acquainted with pre-cancer, but whose kind hearts and fine character led them to me in my time of need, and by my side they have remained.

Daily challenge

Posted: October 25, 2012 | Author: | Filed under: breast cancer, food | Tags: , , , | 5 Comments

It’s been awfully serious around here lately, with the rantings about how ridiculous Pinktober is, and the caterwauling about how insulting the pinkwashing has become to those of us who’ve walked a mile or two in the pink slippers, and how Breast Cancer Awareness Month makes me want to punch someone, anyone, in the brain, and the gravity of living among the distinct possibility that the cancer that so rudely interrupted our lives will come back for an encore.

To combat the seriousness that has overtaken The Belly, I give you my take on the Word Press Daily Prompt challenge. Here’s how it works: every day Word Press presents a daily prompt to get all of us bloggers a’bloggin. This is my first time to partake, so here goes….

The challenge today is this:

Take a complicated subject you know more about than most people, and explain it to a friend who knows nothing about it at all.

My subject isn’t all that complicated to me, but isn’t that the beauty of life — that something that challenges one person is something that another person breezes right through?

So here’s my subject: how to make the perfect chocolate chip cookie.

This process could no doubt be much simplified by scooping pre-made dough out of a tub, by breaking & baking, or by slicing a round off of a log of cookie dough. All three of those options do indeed produce chocolate chip cookies, but not the perfect chocolate chip cookie. In fact, when my favorite boy was just a wee lad, a friend of ours, who was childless at the time, invited him to make cookies with her. He already had a powerful sweet tooth at that young age, so he eagerly agreed to help. He headed for the pantry to get the flour and sugar, and our friend stopped him to show him the roll of cookie dough. She explained that she doesn’t do it the way his mommy does, but that she employs the slice & bake method. He looked at her with genuine puzzlement and asked, “So how does that work?”

Ahhh, from the mouths of babes.

Back to the perfect chocolate chip cookie. This recipe comes from Cooks Illustrated, and it’s a winner. The secret is in the prevalence of brown sugar and using butter that’s been melted, not just softened. If you really want to go all out, instead of just melting the butter, you can brown it on the stovetop until it gets brown and smells nutty.

Preheat your oven to 325 degrees. Take a stick and a half of butter. Unwrap the paper and melt the butter in the microwave. Cool the melted butter while you gather the rest of the ingredients.

Measure out a cup of brown sugar (pack it down into the measuring cup to ensure maximum sugary-ness), then a half cup of white sugar. Pour both into a mixing bowl with the cooled, melted butter. Beat for a few minutes, stopping the mixer to scrape the sides and bottom of the mixing bowl.

Once the sugars and butter are combined well, add a teaspoon and a half of vanilla extract (splurge on the good stuff, not the junky stuff) along with one egg and one egg yolk (I save the unused egg white and cook it for a few seconds in the microwave as a treat for my dog). Mix the butter-sugar combo and the egg/yolk/vanilla until combined.

Measure 2 1/4 cups of flour, 1 teaspoon baking soda, and 1/2 teaspoon salt in a good-sized bowl. Whisk a few times to mix them up, then add to the mixing bowl with the butter-sugar-egg-egg yolk-vanilla mixture. Mix on low speed very briefly — just until combined but not so much that the dough gets overmixed, which will result in disappointingly tough cookies. If you really want to, you can mix the flour-baking soda-salt mixture in by hand. Add one bag chocolate chips–whichever degree of chocolatey-ness you prefer–and stir, either on low speed or by hand, until chips are incorporated but again being careful not to overmix.

If I were making them for myself, I would also add a generous handful of toasted pecans, but I don’t make them for myself because I’d have to spend even more time in the gym.

Once the perfect chocolate chip cookie dough comes together, grease a cookie sheet and scoop out a good-sized bit of dough. For Texas-sized, send-you-to-the-gym-for-all-eternity sized cookies, use about a quarter cup of dough per cookie. For a more modest, I-can-eat-two-because-they’re-small sized cookie, use a heaping tablespoon of dough.

Roll the dough into a ball, then pull the dough apart into halves, with the jaggedy edges facing each other. Rotate the halves until the jaggedy edges are facing up, then smoosh the two halves back together so that you have one cookie again, but with a jaggedy, uneven surface on top. Once they bake, those jaggedy edges result in a bumpy top to the cookie that looks beautiful and conceals slightly the chocolatey goodness that’s contained within.

Now for the purists, put one jaggedy-topped cookie in the middle of your greased cookie sheet and bake at 325 for 6 minutes, then rotate the cookie sheet in the oven and bake for another 4 minutes or so, to ensure even browning. For the giant-sized cookies, bake for 12 to 14 minutes total; for the human-sized, bake a few minutes less. Degree of doneness is a personal preference, so adjust your baking time accordingly to ensure cookies that are slightly gooey in the middle or crispy around the edges. They should be light golden brown when you take them out of the oven. The purpose of the single, test cookie is to figure out the exact baking time.

Once you figure that out, scoop out 12 more balls and bake to your specification. In the meantime, eat some of the cookie dough. You won’t be sorry.

Leave the baked cookies on the cookie sheet to cool completely. You may need to remove one cookie before cooled, for quality-control purposes.

And that, my friends, is how to make the perfect chocolate chip cookie.

 

The space inside

Posted: October 24, 2012 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , | 18 Comments

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.

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