It’s not quite like thatPosted: September 9, 2014 Filed under: breast cancer | Tags: Amy Robach, breast implants after cancer, breast reconstruction, DIEP, DIEP breast reconstruction, DIEP flap, fake boobs, foobs, Guiliana Rancic, Joanna Montgomery, the Big Dig 2 Comments
Joanna Montgomery gets it. She really gets it. It’s a common misconception, yet something that those of us who’ve faced it head-on know. We know because we learn the hard way. Despite the Pollyanna snow job by pink-ribbon celebs like Giuliana Rancic and Amy Robach, having a mastectomy does not mean you get new boobs. Not even close. In this article, Montgomery explains it, succinctly and completely.
“There’s a huge misconception among the general populous about what it means to have one’s breasts removed and replaced with artificial ones (if they are replaced at all). When speaking about my upcoming surgery, I had many well-meaning people say things like, ‘Well at least you get new boobs!’ and, ‘Your husband must be so excited… has he picked ’em out yet?’ Yeah, well, it’s not quite like that. Not at all, in fact.”
Yeah, it’s not at all like that.
Here’s how it really is, as Montgomery so eloquently explains: “It seems that those not in the know tend to equate post-mastectomy reconstructed breasts with augmented breasts or ‘boob jobs.’ Nothing could be further from the truth. You see, augmented breasts are actually real live breasts with nipples and healthy breast tissue behind which silicone or saline implants have been placed, either under or above the muscle, thereby pushing them up and out. If augmented breasts didn’t look damn good, breast augmentation surgeries would not be so, ahem, popular. So even though augmented boobs are often called ‘fake boobs,’ they’re really not. I, on the other hand, do have fake boobs (or ‘foobs,’ as I have become prone to calling them).”
I have foobs, too. Not implants, but foobs made from my own flesh and tissue carved from my belly via a 17-inch-long incision.
Like Montgomery, I am thankful to have had skilled surgeons at the helm of my reconstruction, and I’m thankful to have good health insurance (although the out-of-pocket expenses are still hefty). Sometimes honesty about our foobs is interpreted as being ungrateful. Montgomery says, “those of us who either opted to have mastectomies as a preventative measure, or had mastectomies as a life-saving measure, aren’t excited about our ‘new boobs.’ In truth, we’ll never be the same. We see ourselves differently now when we look in the mirror, because we are different, inside as well as outside.”
TwinniesPosted: November 19, 2013 Filed under: breast cancer | Tags: autologous fat transfer, breast cancer in young women, DIEP, DIEP flap reconstruction, identical twins, identical twins with breast cancer, Kelly McCarthy, Kristen Maurer, the Big Dig 4 Comments
As if one case of breast cancer isn’t enough, how about two cases?
Identical twin sisters Kelly McCarthy and Kristen Maurer from Indiana share a lot of things — including breast cancer. The 34-year-old sisters saw first-hand how devastating cancer is when their mother died from colon cancer last year. Like so many struck by breast cancer, the sisters had no family history of the disease.
Apparently it’s not all that unusual, though, for identical twins to develop the same cancer, because they have the exact same genetic makeup. In addition, twins also have a mirror effect, with one twin getting cancer in one breast, and the other twin getting it in the other breast. McCarthy and Maurer were no different in this regard.
Their treatment was similarly influenced by each other: McCarthy was diagnosed first, with triple-negative breast cancer in her right breast, while 9 months pregnant. A week later, her baby was born, and shortly thereafter she started chemo & radiation, then had a mastectomy. Because of her sister’s diagnosis, Maurer got tested and found early-stage cancer in her left breast and had a bilateral mastectomy with tissue expanders and then implants.
McCarthy’s reconstruction was a bit different: instead of going the more common route of tissue expanders to implant, she decided on a second mastectomy on the “unaffected” breast and flap reconstruction of both breasts. The problem was, she didn’t have enough fat & tissue to create two new breasts. I had a similar experience, sorta. Well, minus the identical twin sister, but sorta. I had extra fat before my DIEP reconstruction, aka The Big Dig, just not enough in my belly, the main harvesting site for DIEP surgery. Instead of having a twin sister donate her excess fat, I had to gain weight so that there would be enough excess in my belly. I went on the All-Butter-Lots-of-Cheese-Bottomless-Beer-Mug diet and packed on 12 pounds. Sadly, not all of it went to my belly (the rest I happen to be sitting upon as I type).
The worst part of the forced weight gain? No, it’s not the leftover junk in my trunk or the persistent craving for beer. It was the “Grab the Fat” game I had to play, more than once, with my plastic surgeons to determine whether my fat was fatty enough. Egads, I’d almost forgotten about the “Grab the Fat” game. I wrote about in this post,
“I thought I’d plumbed the depths of humiliation with the ‘grab the fat’ game we played more than once in preparation for reconstruction. In this game, the doc asked me to drop my drawers so he could grab my belly fat and determine if it was plump enough and plentiful enough to construct a new set of knockers. In a modified game of Twister, he had me sit, stand, and lean over to see just how much fat I had around my middle. Not once, but twice.
Humiliating doesn’t quite cover it.
But today, it was total humiliation, all humiliation all the time. I was basically splayed out like a deboned chicken on the exam table while he searched and plotted. Ladies and gents, just imagine your least favorite body parts being put under the microscope so to speak. Just consider for a moment being asked to stand up, sit down, and contort your body in the absolute least-flattering ways so that the softest, flabbiest, most-despised parts of your body are on full display. And then have those parts analyzed and calculated to determine just how fatty they are. We go to such lengths to de-emphasize these body parts, yet mine were being trotted out like the prize-winning hog at the state fair.”
McCarthy was fortunate enough to skip the “Grab the Fat” portion of the DIEP journey, but her sister probably endured it, because she donated her belly fat & tissue so that her twin could get reconstruction via DIEP surgery. Maurer underwent abdominal surgery — not a tummy tuck, people, because there’s no free lunch in breast cancer — to harvest the goods for her sister’s other breast.
How awesome is that??
Like most twins, McCarthy and Maurer share a close bond. But now, McCarthy said, “I feel closer. Her tissue is over my heart.”
PSA, from me to you. You’re welcome.Posted: November 30, 2012 Filed under: breast cancer | Tags: breast cancer in young women, breast reconstruction, DIEP reconstruction, Hibiclens, micro-mini pigs, mini pigs as pets, miniature potbellied pigs, Oncotype, post-mastectomy infection, the Big Dig 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 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.
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.
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.
BRA Day, yay!Posted: October 18, 2012 Filed under: breast cancer, cancer fatigue | Tags: BRA Day, breast implants after cancer, breast reconstruction surgery, cancer sucks, DIEP reconstruction, the Big Dig, Women's Health and Cancer Rights Act of 1998 12 Comments
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.
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.
Pinktober is making me crazy…for realzPosted: October 5, 2012 Filed under: breast cancer, cancer fatigue | Tags: breast cancer awareness, breast reconstruction surgery, Houston Dynamo, NED, pinktober, pinkwashing, psychological effects of breast cancer, save the tatas, stage IV cancer, the Big Dig 39 Comments
It’s not just an excuse to go postal or blow off some steam, it really is making me crazy. The prolific presence of Pinktober is making me nuts. I’m seeing red (of which pink is a derivative, I suppose). The other day, a woman in the grocery store was sporting one of the worst pink offenders, IMHO, the “Save the Tatas” shirt. I saw her and her offending shirt in the produce aisle and felt a sick feeling in my stomach. I was barely in the store and was already being thrust into the belly of the beast. Just walking in the store, I was accosted by a huge display of “awareness” crap — flower arrangements, helium-filled balloons, potholders, even pink-ribbon bedecked cakes, for cryin’ out loud. Sheesh.
Do those of us who have tangled with this damn disease really need to run the gauntlet of reminders of said disease just to get into the grocery store? Sheesh.
Maybe the display of pink junk that greeted me at the store set me up so that when I saw the “Save the Tatas” shirt, I was primed and ready for a tussle. I tried to be respectful. I did. I entered into the conversation with every intention of getting her point of view. I’m curious, genuinely curious, as to why a grown woman would sport such a message across her chest. So I pointed to her shirt as our paths crossed by the giant pile of pumpkins (which thankfully had not been painted pink). I asked her if she’d had breast cancer. Just curious. She said no, she has not had breast cancer. Oh, so you know someone who has? I asked. No, but she bought the shirt to support breast cancer awareness.
Ah, yes, “awareness.” More “awareness.” The “awareness” we all so desperately need.
The interrogation continued as I asked her if she was aware of how buying the shirt helps, and what, in her opinion, does “awareness” even mean? She didn’t really have an answer for that. Huh.
I pressed on, like a dog with a bone, and asked if she was aware of which charity received proceeds from the purchase of that shirt. Again, no answer. At this point, she was probably wondering how to contact security in the grocery store. I concluded our little chat by telling her that I have had breast cancer, and I do know many other women who have as well, and that those of us in the pink ribbon club don’t care for those shirts because some of us were put in the unpopular position, through no fault of our own, of not being able to “Save our Tatas,” and that seeing such messages serve as a stark and unwelcome reminder of that most unpleasant fact.
She said she’d never thought about that. She was not aware of that.
I bet she’s also not aware of the fact that once you lose your tatas, each and every glance downward or glimpse in a mirror is a smack in the face. That even after reconstruction — or multiple reconstructions — those tatas will never be the same. Some women end up with a version they like better. Some end up with a version that makes them sad each and every time they see that new, not-so-improved version.
She and I parted ways, me feeling marginally better for having unburdened myself, her probably feeling like she needed to go home and lie down. Hopefully she went home and threw that damned shirt in the garbage, where it belongs.
Then I hear that our local professional soccer team, the Houston Dynamo, is hosting an “awareness” event of their own tomorrow. The first 5,000 fans at the Breast Cancer Awareness Match will score a mini pink soccer ball. Sweet.
But this is how they choose to market the event.
Not so sweet.
Tell me, please, anyone, what the scantily-clad cheerleader in the pink attire has to do with breast cancer? Or is that what it takes to get people to attend the event? Questions, people–I have questions!
I had to dig pretty hard to find any info on the actual event. While these images are splashed all over the web, details on what the event really is all about remain elusive. The Dynamo website shows a much less exciting image:
But when I clicked on the link to bobby boots breast cancer/Dynamo Charities, I got nowhere. The computer told me that the page I sought could not be found. Bummer. My next question: is the bobby boots breast cancer image above, with the philanthropic player (who I assume is Bobby) and the soccer-cleat-wearing pink ribbon, that much less effective than the perky cheerleader in her push-up bra? Do people really care less about this dreaded disease if it’s marketed without actual images of breasts?
I was still full of questions when I saw this on a car:
Great, here we go again.
This time, I didn’t accost the person sporting the offending message because the light turned green. But I wanted to. I wanted to say, Can you imagine in your wildest dreams putting sticker on your car that says “balls! support testicular cancer research!” Or “ovaries! egg-makers or silent killers?” No, me neither. As the shirt says, It’s all about the boobies.
It certainly isn’t “all about the boobies” — it’s about a woman’s life, and how BC threatens and too often takes her life. I’m still waiting for an explanation of how any of this boobie culture makes any difference in the “fight” against breast cancer. If you see a guy wearing a shirt like this, does it enact any change whatsoever in the BC arena?
I wonder how he would feel if I wore a shirt saying “PROSTATES make me happy”? I can’t even find an image of such a shirt because guess what — it doesn’t exist! No, instead the prostate cancer “awareness” shirts look like this:
“I Wear Blue for My Dad” conveys a slightly different message than “Save Second Base.” It says the focus is on the person, not the body part. The take-away message here is that sexualizing a devastating disease does nothing for those who suffer from it.
Well, wait a sec — I take that back. Sexualizing a devastating disease does do something for those who suffer from it. It makes them feel bad. Really bad. It makes them mad. Really mad. It makes them want to accost random people in the grocery store or at the bank and set them straight. It makes them have to confront the fact that at this very moment, they may be crossing that bridge from “survivor” with NED to stage IV without a cure. I will never, ever forget the feeling of utter fear when the first oncologist I consulted said once a cancer comes back, no matter what stage it was upon original diagnosis, the recurrence sends you straight to stage IV and you’re considered incurable. Not that you’re going to die from it, as many stage IV cancers can be managed, but treatment is ongoing, as in, for the rest of your life (however long that will be).
That, my friends, is the reality of breast cancer. Not a cutesy slogan. Not a titillating (pun intended) t-shirt. Not an overtly sexual bumper sticker. It’s not about the boobies. It’s about my life.
A pretty pink piece of mailPosted: October 2, 2012 Filed under: breast cancer, cancer fatigue | Tags: breast cancer awareness, breast cancer awareness month, DIEP flap, DIEP reconstruction, feel your boobies, mammograms, pink ribbon madness, pinktober, pinkwashing, save the tatas, sexualizing breast cancer, the Big Dig 14 Comments
Because it’s October and we’re awash in all things pink, I got this cute little notice in the mail from my health insurance company.
Of course it got my attention, amidst the heaps of junk mail, because it’s pink and because when I see a pink ribbon, my brain immediately goes into fight or flight mode as visions of Komen’s money-grubbing dance in my head.
Ok, that’s a bit harsh; Komen isn’t just about money-grubbing. But Pinktober does that to me. I jump to conclusions and get all snarky.
I sat down to read this pink piece of mail, expecting to roll my eyes at yet another meaningless and offensive bit of “awareness” propaganda. Plus, the headline imploring me to put myself first made me think I had free reign to be totally selfish and say, go get a mani-pedi instead of cooking dinner for my people. I had to read more!
Sucked in by the pink haze and the make-me-be-naughty headline, I read on. Page 2 asked a pressing question:
Why, yes, as a matter of fact, I did know that. I also know that mammograms aren’t all that effective at detecting a lump in one’s breast, as I’d been having a mammo every year and at various levels for 5 years before my lump was detected, and even then, it wasn’t detected by a mammo at all but rather by my uber-vigilant OB-GYN, who I credit with saving my life, or at least saving me from a much more protracted and undoubtedly less pleasant cancer “journey.”
Oh, boy, there goes the snark again.
I love the images used in this: the radiantly healthy, young, smiling patient with her gown perfectly draped around her non-cancer-infested body. The state-of-the art screening equipment. The competent and in-control technician. And last but not least, the perfectly round, plump, healthy breast on the screen.
Now I’ve moved straight from snarky to sad, and I’m only on page 2.
Page 3 gets a little more serious, but I’m still sad. That image of the round, healthy breast stays with me. I like that page 3 imparts a serious note, taking care to provide a few snippets of facts & figures to prod one but not scare the bejeezus out of one. The sympathetic tone of, “We know you haven’t scheduled your mammo and we understand, you’re busy taking care of everyone under the sun” is really effective. It’s also very reassuring the way the text suggests “Hey, if the worst does happen and the mammo we suggested you schedule shows that you do in fact have breast cancer, it’s ok; you’re good. We caught it early so you’ll survive.” (You’ll survive, but your life, your wallet, your mind, and most of all, your body will never be the same.)
It goes on to list the signs & symptoms of breast cancer, just in case you aren’t sure. And another suggestion to schedule that mammo today. I love the line about how it won’t cost anything but time. I guess they decided against full disclosure, and nixed mentioning that the smooshing of those nice round breasts is uncomfortable, and that the hospital smell and presence of nightmare-inducing germs everywhere may make you want to run screaming from the building, it might freak out the intended audience and one might decide to chuck the pretty pink pamphlet onto the recycle pile without a backward glance.
I did a double-take at the statistic at the bottom of the page: Did I know that BC claims last year totaled $4.3 million? No, I didn’t know that. That’s a lot of cake.
At first blush, I thought: what kind of nutter is running the accounting office, if they don’t know that I’m one of those claimants? How can they overlook the fact that I’m likely responsible for a quarter of their 2011 claims costs? I’d think that my name is at the top of the list, perhaps with a yellow highlight or maybe an alarm bell that rings, or who knows, a nuclear-reactor type meltdown when my name and ID number are associated with yet another costly claim for United Health Care and Baker Hughes. It’s been a while since I’ve kept an eye on the amount of my claims, but it’s safe to say that it’s up there. Not crazy expensive, like the dresses Ann Romney continues to wear for public appearances, seemingly clueless to the fact that this thing called the Internet exists and it’s easy to check on which designer created her frock and how much it cost, all while she and Mitten claim to be regular folks who don’t consider themselves filthy rich.
Oh good grief, the snark is back. Let me go back and look at that sweet image of the round, healthy, never-to-be-seen-again-on-my-body breast.
Ok, all better.
Thankfully, before I could call the health care PR folks and cuss them out for sending me–me, of all people–a mailing asking if I knew how much my claims had cost them, the Hubs saved me from embarrassing myself and owing a hard-working corporate soul an apology. Just as I was getting really worked up about how in blue blazes could they NOT KNOW that I’ve made hundreds of thousands of dollars in claims because of breast cancer, the Hubs reminded me that we didn’t have United Health Care during the shitstorm of mastectomy, infection, hospitalization, endless labwork, multiple stabs at diagnosing that damned infection, surgery, surgery, surgery, hospitalization, not one but two infectious-disease teams, at-home IV antibiotics, debridement, debridement, home health care, more debridement, more at-home antibiotics, wound vac, the Big Dig aka DIEP reconstruction, ICU hospitalization, more antibiotics, 2 revisions to said reconstruction, and at least 100 visits to the plastic surgeon, yadda yadda yadda.
United Health Care got me once the bulk of my spending frenzy was done. No wonder they send me such nice, pretty mail. Whew, I am SO glad I didn’t get on the horn and issue a blistering diatribe to the first person to answer the 800 number. That would have been soooo embarrassing.
The pinky mail wraps up with one final statistic:
I guess I should be moved by the fact that United Health Care is looking out for the many women who are eligible for a smash-&-snap but who didn’t schedule one last year. And I am. Yes, I know that it’s in UHC’s best interest to have their insured women get their mammos, because screening is cheaper than mastectomies and chemo and radiation. I do like the gentle statistics employed in this publication–nothing too in-my-face, not all gloom & doom, no hint of “do this now or burn in BC hell.” I appreciate the assumption that I’m a grown woman who can decide for myself; personally I’m not one who needs to be told twice when it comes to doing something necessary but unpleasant, but I can forgive the repeated pleas to schedule that mamno now, because not everyone shares my “get ‘er done” mentality, and most women have less flexibility in their schedules than I.
This piece of mail struck the right balance of “you need to do this even thought it might uncover your biggest fear and thrust you headlong into a medical nightmare” and “that said, we’re here and are gonna take care of you.” I give high marks to the copywriters who straddled the idea of scaring us enough to schedule that mammo but not keeping us awake at night wondering what it will be like.
Before I was diagnosed, I didn’t give much thought to breast cancer. Sure, I saw the pink ribbons everywhere and thought the women whose bald heads were under cover of a pink bandana are mighty brave (I still do think that, BTW). Even when I got picked for the melanoma lottery, and even when my sweet mama died a not-so-pleasant death from a reproductive cancer at the still-too-young age of 67, I didn’t think much about breast cancer. I still didn’t think much about it when my awesome OB-GYN learned of my sweet mama’s death and said let’s go ahead and get you started with a baseline mammogram, even though you’re nearly 5 years away from the recommended screening age. Every year my mammo came back funny (not funny ha-ha but funny peculiar, because there’s not a damn thing funny about a funny mammo). I still didn’t think about breast cancer. The radiologists chalked it up to dense breast tissue and said, let’s see what’s going on next year. Then the next year, the images still looked funny, and maybe even a bit more unusual, so I saw a breast specialist and endured a series of biopsies. And still, I didn’t think about breast cancer. That breast specialist said the biopsies didn’t show anything overtly cancerous, and I was young for the cancer beast to come calling, so let’s just keep an eye on it and continue the annual screenings. Even then, I didn’t think much about breast cancer.
Fast forward to the present day, as I sit with a well-done mailing imploring me to schedule a mammogram.
Now I feel the need to call United Health Care, not to cuss anyone out, but to tell them thanks for the pretty pink mailing, but to kindly remove me from the distribution list for future mailings. See, I won’t be scheduling a mammogram this year, or any year in the future. Instead, I go see the unflappably darling Dr Dempsey twice a year for a chest and lymph node ultrasound. It’s not a breast ultrasound, because my breasts contain no breast tissue. Nope, they are made of 100 percent belly tissue, and breast tissue and belly tissue look totally different in a mammo. As far as I know, there’s not a smash-and-snap procedure for the belly. In addition to my twice-yearly screening by my favorite breast surgeon, I get to see my cutie-pie oncologist three times a year. Blood work checks my tumor markers and hormone levels, and I submit to a thorough exam and lecture about my champagne habit.
Maybe I will call United Health Care, to tell them that I appreciate them putting out such a fine piece of mail. The best part about the mail? Not once is there an image like this
And for that, I’m grateful.
Elizabeth Lloyd: you’re an idiotPosted: June 27, 2012 Filed under: baseball | Tags: Elizabeth Lloyd, Little League baseball, micobacterium fortuitum, nosocomial infection, People I Want to Punch in the Throat, post-mastectomy infection, ridiculous lawsuits, the Big Dig 9 Comments
I’d use a more colorful name but she’d probably sue me. Like she’s suing an 11-year-old boy for throwing a baseball. In a dugout. At a Little League ball field, where presumably baseballs are thrown and sometimes not caught. But wait, if Elizabeth Lloyd has chosen to insert herself into the media, in her money-grubbing way, she’s a public figure, right? So I can call her whatever name I like and she has to take it. Perhaps I need to brush up on my libel knowledge, but in the meantime, I’m going to call her Asshat.
Here’s the story, in case you were paying attention to real news that actually matters and missed it: Asshat was at a Little League game in New Jersey two years ago, watching her son play, and was hit in the face by a ball. She was sitting on top of a picnic table next to the fenced dugout where a catcher, Matthew Migliaccio, was warming up his teammate, the pitcher. Migliaccio overthrew the ball and it hit Asshat in the face. According to the local newspaper, He ran over to her to ask if she was ok, and she told him she was fine. Says Matthew: “I went over to see if she was okay, and she said that she was fine and not to worry about it. About like three weeks after, she came and gave me a hug and she told me that it wasn’t my fault.” Asshat said to Matthew, “I know you didn’t do anything wrong.”
However, two years later — just days before the statute of limitations would expire — Asshat decides that errant ball was thrown “intentionally and recklessly” and she needs half a million dollars for it. WTH??
Asshat claims that Matthew assaulted and battered her.
This claim is insulting to anyone who has truly been assaulted and/or battered. I’m sick.
So is Matthew. Poor baby was minding his own business, probably playing MW3 on the Playstation like the 13-year-old boy who lives at my house, when the doorbell rings and he is served papers. A 13-year-old child was served papers. Matthew said, “I think it’s pretty mean to sue someone after you told them that you knew it wasn’t their fault.”
Pretty mean indeed.
Matthew’s attorney, Anthony Pagano, says the case is bogus and the family will not settle with Asshat. “What are we gonna do, take his bike? He’s 11,” Pagano said.
Fact: 11-year-old kids overthrow balls. Fact: 11-year-old kids do not always catch overthrown balls. Fact: Elizabeth Lloyd is an asshat.
The overthrown ball traveled more than 60 feet before it hit Asshat, who was sitting 5 feet from the fenced bullpen. Reports conclude that while Matthew is an avid gamer, playing on 3 different teams, he was 11 years old at the time of the “assault” and didn’t exactly have a cannon of an arm like one sees in the major league. Matthew’s father says ”It’s absurd to expect every 11-year-old to throw the ball on target. Everyone knows you’ve got to watch out. You assume some risk when you go out to a field. That’s just part of being at a game.”
Hear hear. Guess what, Asshat — life is risky; get a helmet.
The circus may be gone, but the big top remainsPosted: May 11, 2012 Filed under: breast cancer, cancer fatigue, infection | Tags: DIEP breast reconstruction, life after breast reconstruction, mycobacterium fortuitum, nosocomial infection, post-mastectomy infection, psychological effects of breast cancer, the Big Dig 20 Comments
Saw Surgeon #2 last week about the next step in revising The Big Dig. Didn’t want to talk about it or blog about it at the time. I’m not sure why, but I suspect it has to do with Surgeon #2’s comment about me having “been to hell and back.”
Part of me thinks it should be very gratifying to hear Surgeon #2 say that. After all, I respect her immensely, and it’s quite validating to hear someone I think highly of say that I made it through a seriously trying time, and that I made it with flying colors. If there were a report card for cancer/infection/surgery progress, I think I’d have straight A’s.
No such report card exists, however, and a 4.0 in this particular course-load is meaningless. There is no honor roll in the ranks of survivors. Instead of a gold star, I have some big-time scars across my chest and belly. I’ve gained a few hard-won wrinkles etched in my furrowed brow, too, from the worry that accompanies a cancer diagnosis, a post-mastectomy infection, 267 days of oral antibiotics, and major surgery followed by not one, not two, but multiple revisions. There’s no end in sight to this circus. The fairgrounds are quiet, but the circus tent remains. The bearded lady has gone home, and the trapeze artists have ambled along, too. The wild animals are safely ensconced in their cages, and the carnival rides are dormant. The circus, however, lives on. It seems there is no end to the drama and three-ring craziness that is life after breast cancer. I hold out hope that at some point the circus will vanish in the night, and I will awake to find sawdust, peanut shells, and the faint smell of adrenaline and cotton candy. But alas, the big top remains.
I saw Surgeon #2 last week to get her opinion on the next step on this cancer “journey.” Like a traveling circus steaming toward the next town, the cancer “journey” chugs along. I sought Surgeon #2’s expert opinion on the next phase of this “journey.” After The Big Dig and subsequent revisions to perfect what is essentially an imperfect canvas, I needed to hear her say “do this” or “don’t do that.” I needed to know whether there’s any point to pursuing yet another tweak to my restored chest.
Surgeon #2 was her usual cheery, to-the-point self. She says I’m “almost there” in the relentless pursuit of normalcy — at least on the physical side — after breast cancer and reconstruction. That’s the tactful way of saying “We can do a little more, but it’s never going to be perfect so we’re getting close to the time in which you start to accept it.”
I don’t want to accept it.
I’m still hanging onto the myth — albeit cruel and deceptive — that one can have nice boobs again after cancer. Public Service Announcement #852 from this little blog: If you hear someone say, “Bummer about the breast cancer, but at least you get new boobs,” be aware: the new boobs may not be something you actually want.
I’m still not ready to accept that ugly truth.
Surgeon #2 concluded my consultation with a little look-see at an 8 1/2 x 11 inch photo of myself pre-reconstruction. I don’t remember posing for that picture, as there have been several photo shoots associated with this cancer “journey,” but there it was, on the inside cover of my file. Surgeon #2 flashed that full-sized photo of me, with one tidy mastectomy scar on the left and one not-so-tidy scar on the right. The right side, a mess of multiple scars and tissue excisions necessitated by the nosocomial infection. I hadn’t seen or thought about that scene in many moons. I recognized the train wreck on what was formerly known as my right breast. I recognized the God-awful blue paper panties required for plastic surgery photos. I recognized my former belly button, so normal and non-Frankenstein-looking. I recognized the flabby belly that I was required to acquire so that the DIEP surgery — my only reconstruction option — could occur. That belly was flabby, but it was unblemished and absent was the 17-inch incision from hip to hip that has mellowed but will forever be a stark reminder of what the king’s horses and the king’s men did in an effort to put Humpty Dumpty back together again.
While I hadn’t seen that photo in nearly two years, I recognized every aspect of it. However, when Surgeon #2 said, “You’ve been to hell and back,” I couldn’t conjure up the specifics I expected to feel about that dark period in my cancer history. In fact, hearing her say “You’ve been to hell and back” was startling. I didn’t expect it. I didn’t know how to react to it. And days later, I still don’t know how to react to it.
I suppose I should have felt some pride and/or satisfaction at having endured that trip down the “If anything can go wrong, it will” scenario. Perhaps I should have felt a sense of accomplishment at having survived that arduous trip down the rabbit hole. I guess I should have felt happiness at having come out on the other side of such a hellish situation. But I didn’t.
Instead, I felt as if I were watching myself in a movie. I remember being there, of course, and I remember that all that happened to me. But I can’t conjure up the specific feel of the experience. I can’t visualize the ins and outs of that particular “journey.” I see myself, my physical body, in that full-size, color photo (which is not at all flattering, by the way), but it doesn’t seem like me. I see that former body through a myopic lens. The rational side of my brain knows it did indeed happen to me, but the protective side of my brain has shielded me from calling it up, in all its ugliness. Like the flash of lightning in the night sky of a summer storm, or the sharp but fleeting heat of a jalapeno pepper on the tongue, I know it’s there but once it’s gone it’s gone. For that I should be grateful.
But I’m not grateful.
And really mad.
Maybe it’s too soon to feel triumph over the wily infection that wreaked untold havoc on my weary body. Perhaps the time is not right to celebrate how far I’ve come. Maybe I’m simply not one to say, “That was rough, but I got through it.” Apparently it’s a long way from beginning to end, if there ever is an end, and I’m not there yet. While it’s been almost exactly two years since I bid adieu to my cancer-riddled breasts, that’s not enough time to process the enormity of all that’s transpired over the last 728 days. If it were a linear path from diagnosis to mastectomy to psychological recovery, I might be in a position to expect some change, some healing, some progress to have occurred. But I was busy processing that nasty infection instead of dealing with the weight of cancer at age 40, so the change, the healing, the progress remains at a standstill.
The big top remains.
The Phantom TollboothPosted: March 27, 2012 Filed under: breast cancer, cancer fatigue, literature | Tags: Chuck Jones, longterm antibiotics, mycobacterium fortuitum, post-mastectomy infection, psychological effects of cancer, PTSD, the Big Dig 6 Comments
Remember that book from back in the day? It was also made into an animated movie by Chuck Jones, the genius of cartooning. It was written before I was born, by Norton Juster and was illustrated by Jules Feiffer. Not sure what either of them has gone on to do, but perhaps the Tollbooth was enough.
It’s the story of a boy named Milo who unexpectedly receives a magic tollbooth, which he explores in a toy car. Along the way he becomes lost in the Doldrums, where thinking and laughing are strictly prohibited, and is rescued by Tock, a lovely giant watchdog with an alarm clock attached to his belly. The parallels between this story and the cancer “journey” are many.
I was thinking of The Phantom Tollbooth yesterday as I noticed a phantom pain deep in the area formerly known as my right breast, where the evil post-mastectomy infection set up camp and decided to stay awhile. The pain itself wasn’t strong enough to take my breath away, but the implications were, and my mind immediately began racing: what if the infection is back? what if it never fully went away? There were signs of that damned infection, after all, during The Big Dig, which was 9 months after the infection first made itself known.
It’s been a year since The Big Dig, which was my best option for defense against the infection after 267 days of oral antibiotics didn’t fully slay that beast. Nearly a year later, a random pain in the area of my body that was my Ground Zero still has the power to bring me to my knees. Not because it hurts so badly, but because of what it represents.
The idea of the infection once again rearing its ugly head scares me. A lot. I don’t think about it often because I’m busy living my life, but once in a while, as in the case with the phantom pain, the thought does cross my mind. If it did come back, or if it reasserted itself after lying dormant, I would freak out. And yes, that is the correct medical term for becoming reacquainted with the mycobacterium that made a cancer diagnosis at age 40 seem like a walk in the park. The cancer part was easy (relatively speaking) but the myco damn near destroyed me.
Looking back on that dark period of my life is like watching a movie. I see this girl who’s going about her charmed life. Sure there are things that could be better but for the most part it was indeed a charmed life. She lives this charmed life rather out loud, and does “all the right things” to ensure that the charmed life has plenty of staying power. Baseline mammograms at age 36 because of her sweet mama’s premature death; a meat-free, plant-based diet free from preservatives and other nasty; daily exercise; a premium placed on a good night’s sleep; plentiful fresh air and clean water; an all-out avoidance of hormone-filled dairy products for her and meat products for her kids; a plan to deal with the stresses that sometimes darkened her door.
This girl was the last person you might expect to be felled by cancer. And yet, she was.
It’s hard for me to recall those dark days. Of course I know it happened and I was there, but my brain seems to protect me from all the gritty details. After taking in the diagnosis, deciding on the bilateral mastectomy, enduring the surgery and thinking I was on the road to recovery, the infection hit and knocked the wind right out of me.
There’s a vivid PTSD associated with the whole infection thing. I’d bet there’s a whole separate PTSD associated with the cancer thing, too, and it comes out in strange ways, such as a phantom pain sending me straight from normalcy to crazy town without stopping to collect my $200. Could be that the phantom pain in my chest was from 4 sets of tennis on Sunday after a tough upper-body workout on Friday. Or it could be from the wear & tear of multiple tissue excisions and general gutting of the infected skin during the infection’s salad days. When I was a kid, I had pneumonia, and some part of the illness settled in my left lung. For years after that illness, I’d often feel a pain/fatigue in that same spot. Perhaps the phantom pain in my chest is similar.
Very likely it’s nothing to worry about, but once you’ve danced with the devil that is cancer, any twinge or spot or pain sets you on high alert. Some of us head straight for the catastrophic death spiral my sweet friend Lauren writes about. As she so knowingly puts it “The catastrophic death spiral makes us think a lump in our thigh is thigh cancer, a headache is brain cancer, and shortness of breath after running is surely announcing lung cancer. The catastrophic death spiral is the vortex that is cancer.” My recent phantom pain sent me spiraling before I had a chance to reel myself back in to the land of rational thought. It’s worrisome enough to have already dealt with the havoc that cancer brings, but to also feel the aftershocks of that disaster just stinks.
I expect that the constant looking over my shoulder is common in cancerland. But I don’t like it. I’m rather known for my heightened sense of justice and the idea that if you do the hard work/right thing, you’ll get the payout. But bad things happen to good people every day, and life isn’t fair. People who take good care of themselves get cancer, and people who treat their bodies to a buffet of Animal House-style debauchery outlive them. I know this, yet I’m still brought up short by the phantom pain’s effect on me and how quickly and effortlessly I returned to the catastrophic death spiral.
I was probably foolish to think that there would be an end to the cancer “journey” and that the incidences that trigger PTSD would gradually disappear. I should have known that even after logging many miles and paying the requisite tolls in this “journey,” I would forever be circling, just shy of my destination, and always consulting the map. Once Milo returns home from his trip on the tollbooth, he sees a note, which reads, “FOR MILO, WHO NOW KNOWS THE WAY.” I’m looking for my note and wishing I knew the way.