It’s not quite like that

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.”

 

 


A pretty pink piece of mail

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.

Sigh.

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.

My bad.

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

ort this

or this 

or this

or this

or this

or this

or good-golly-miss-Molly this

And for that, I’m grateful.

 


The phoenix

Yesterday’s visit to the doctor was the usual highlight of my day. We laughed, we sparred, we talked about my new Fiat, and I once again stood buck-naked in front of his omnipotent eyes for my three-week post-op checkup. Here’s where it got interesting: I told him that while I appreciate his valiant efforts in the OR, I’m not happy w the results. Shape, size, asymmetry, bumpiness…. I’m sure I wounded him deeply, but had to get it out there. And of course, it goes without saying that I’m not dissatisfied with his work, quite the opposite, but with the ongoing, multi-step drudge that is reconstruction.

I asked about options if the fat transfer doesn’t yield good results. It’s a relatively new procedure and data is scarce, so it’s hard to predict the final results. But I need options. Can he suck out the fat he’s transferred? Can I go back to being totally flat-chested? Because honestly, I’d rather be flat as a board than have an elliptical uniboob. The cleavage line looks great, but only from a distance, and I’d sacrifice it to get back to the point of being satisfied with my chest.

photobucket.com

I know it’s hard for a plastic surgeon to grasp that a woman in the USA doesn’t want the biggest knockers she can possibly get, but I keep hammering away at the fact that I am indeed that woman. I’m all for a curvy silhouette but do not want big boobs.

To fix the aspects I’m dissatisfied with, we need to inject more fat, which results in a bigger bust. I don’t want that. I’ve said from Day One that I don’t want that. In fact, I think my exact words to the doc in my consultation right after diagnosis were “If I wake up from surgery with DDs I will kick your teeth in.” Direct quote. In fact, I need to get him a little pillow for his office couch with that message needle-pointed on it. That, and my other recurring message to him, also uttered at that first meeting: I know I’m not your only patient, but I’m your most important patient. I have threatened to get that needle-pointed for him, too.


Not quite able to wrap his brain around my crazy-ass request, the doc asked if I’m talking about sucking out the fat transfer part or the entire DIEP flap. I said the latter. If I’m going to go back to being totally flat-chested, I can’t have former-tummy-nee-breasts hanging around. To say he was stunned is the understatement of the day. Probably of the week. Maybe even the year, and perhaps this question would score high on the top 10 list of most shocking things I’ve ever asked for. googleimages.com

I reminded him that I understand that reconstruction — and revisions — can be a process. In my case, a multi-step process. As much as I’d love 1-stop reconstruction, that was not in the cards for me (thanks for nothing, mycobacterium, you wily bastard). Revisions to reconstruction are a process. I get it. Change comes incrementally and require more than 1 surgery. I get it. But being an “I wanted it yesterday” kind of girl, I’m impatient. And being a procedural rather than big-picture kind of girl, it’s hard for me to imagine how this is all going to turn out once the scalpel is laid down, the anesthesia wears off, and the final revision is complete. Whenever the hell that may be.Needless to say, the good doctor wasn’t crazy about my idea of sucking out and throwing away all of his hard work. We discussed the biggest source of unhappiness with my newly created breasts: the shape. Granted, it’s mind-boggling to me that a surgeon can cut a gal open from hip to hip, harvest the skin, fat, and blood vessels from her belly, stretch the remaining skin back together and stitch it up into straight line, replant the blood vessels into the chest wall, and form the skin and fat into any semblance of breasts. That truly boggles my mind. And yet, it happens, every day.
While I understand on an intellectual level how difficult this surgery is, and that the shape of the belly-turned-breasts may need some fine-tuning, and while I have every confidence in the doc’s skill and artistic ability, I still have a hard time believing that what I see today will ever look right. I know i twill, but I just can’t see it right now. I can’t envision how the oval-shaped uniboob will ever evolve into separate but equal, nicely rounded, not-too-big breasts. I just don’t see it. I’m accustomed to the sports-bra-induced uniboob, and I realize that sometimes bad things happen to good boobs, even Oprah’s. 

All this talk we Cancerchicks hear about how lucky we are to get new boobs is utter horseshit. I’m on the record saying that is a humongous load of crap. I was perfectly satisfied with my pre-cancer body, and there’s not one thing I can name that is better now. Ok, except for the absence of the tumors that would have eventually spread and killed me. That part is definitely better. And I’m no longer afraid of needles. Having been poked and shot up more times that I could ever count, and with a boatload of port flushes and blood draws and monthly B12 shots and quarterly Lupron shots and injections for scans ahead of me, I don’t even flinch anymore. Not even the thought of a 20-gauge needle piercing my skin and extracting my lifeblood scares me anymore. But conquering the fear of needles doesn’t really count as a way in which my body is better after my cancer “journey.” 

I’ve never been one to be hung up on body image (thankfully, because that can mess you up bad). I’ve never aspired to be a super model, which is a good thing because I’m pretty sure there’s not much of a market for 5-feet-tall candidates who aren’t stick-thin. I’ve always viewed my body as a workhorse: the vessel that contains the essence of who I am; the engine that drives me in sport and play; the carrier that allows me to complete the mundane tasks of domestic life such as unloading groceries and maintaining my home; and most importantly, as the oven and keeper of 2 precious babies who are growing up to be amazing people, if I do say so myself. 
From Day One of my cancer “journey,” I knew in my heart of hearts that losing my breasts but keeping my life was a trade I was willing to make. I knew beyond a shadow of a doubt that I am more than my breasts. While clothes may make the man, breasts do not define the woman. I certainly wasn’t happy about being diagnosed with breast cancer and undergoing a bilateral mastectomy, but I wasn’t sad about losing my breasts. I looked at them the same way I look at a spot of mold on a hunk of my favorite manchago cheese: cut it off so it doesn’t spoil the rest. 

I will admit, however, that I bought into the whole “new boobs” scam. I thought, well at least I’ll be nice and perky in the old folks’ home. No one tells you, though, that the “new boobs” may never be better than the old ones. Hell, they may never even be equal too, and dammit, they might even be lesser than. This is a closely-guarded secret of the “new boobs” scam, and I’m happy to expose this untruth for all the world to hear. 

Now before you start sending me hate mail or telling me I’m flat-out wrong, I will concede that for a lot of women, reconstructed breasts are better than their saggy, flabby, pre-cancer breasts. I’ve seen plenty of photos on the web from countless plastic surgeons, so I know this much is true. But guess what? I’m not one of those women. Most of those women are 20+ years older than me and 40+ pounds heavier than me. For them, the “tummy tuck” part of DIEP reconstruction is a godsend. For me, not so much. I’d happily go back to having a slight pooch if it meant not having a 17-inch scar across my belly. No question. 

Lest I’m not clear, let me reiterate: I’m thrilled with the fine work that the highly skilled docs did. Going from a concaved chest wall that had endured multiple tissue excisions to an adequately stacked chest was a small miracle, performed by my 2 docs and their professional team. Knowing that there were 4 people conducting the transformation was immensely reassuring as I underwent the DIEP. This talented group made it possible for this beleaguered phoenix rise from the ashes, no doubt.

But this phoenix isn’t happy with reincarnation alone. This phoenix craves the return to what used to be, but what is no more. 




The battle of the K tape

In addition to battling cancer and a nosocomial infection, I’ve also been busy battling plantar fasciitis.

mayoclinic.com

The PF preceded the BC, and while not as nasty–and certainly not life-threatening in any way–it’s a major drag. My feet hurt all the time. All. The. Time.  Maintaining my busy-body active lifestyle is pretty tricky with feet that hurt All. The. Time. It also severely limits my footwear. Cute shoes are pretty much out, as is going barefoot. I haven’t resorted to orthopedic shoes, but I’m not out of the woods yet, either. I have custom orthotics that go in my tennis shoes (don’t be jealous), and if I’m not wearing my tennies, I’m in my very dear Cole Haan flip flops or my not-s0-cute but cushy crocs flip flops. Thank goodness I don’t work in an office that requires closed-toe, pinchy shoes. I’d have to quit or get fired. Probably option #2.

I’ve seen a foot doctor, I’ve tried herbal remedies, I’ve taken copious amounts of RX anti-inflammatories, I’ve iced and elevated and slept in a splint. I had high hopes that while recovering from The Big Dig and taking several months off from tennis and most of my daily activities beyond laying in bed bemoaning my pitiful state would provide some respite from the foot problems that plague me. Alas, it did not. In fact, having foot pain while lying in bed doing none of the active things I want to do gave me more about which to bemoan. 

My tennis buddy and dog-spoiler extraordinaire Christy had the answer to my problems. Dr Scott Kelly of the Airrosti Clinic. I need another doctor in my life about as much as Lindsey Lohan needs another bad-influence friend. The thought of adding yet another doctor my circle of docs did not appeal to me one little bit, but desperate times….

The Airrosti Clinic uses an intense treatment model that involves some serious hands-on time with the doc. And when I say hands-on, I mean he’s gonna put his hands on your tenderest injured spot and mangle the hell out of it. For real.

airrosti.com

See, fascia is connective tissue that covers most of our body. It covers the different muscles, blood vessels and nerves “much like plastic wrap holds the contents of a sandwich together,” as it was explained to me. Problem with fascia is it’s everywhere, so your chance of injuring it is great, and it has little or no blood supply, so your chance of healing said injury is not great.

That’s where the laying of hands comes in. Dr Kelly gets his long, strong, mean hands into the damaged fascia and starts kneading it like bread. Then stretching it like taffy. Then punching it like a speed bag. All the while laughing maniacally at the moans, cries, screams and curse words coming from the patient. (Ok, he doesn’t really laugh maniacally but he does seem to enjoy his work very much, and when I showed him the line of bruises on my calf after his first hands-on treatment he smiled with obvious pride and said that’s his signature, and if he could sign his name in bruises, he would. That’s one autograph I don’t really need but apparently am gonna get. Repeatedly.)

When I met him last week, he grabbed ahold of my foot and said he could diagnose me in 30 seconds. I said I didn’t realize this was like speed-dating. He rolled his eyes, then told me that he could cure my PF in 3 treatments. I asked if he could also name that tune in one note. Why oh why don’t any of these doctors get my humor??

As skeptical as I was, I have to say that after the mangling, kneading, stretching, punching, and cussing, I could tell a difference. It took a while for the shock and trauma to subside, but once it did, I could tell that we were getting somewhere. The day after my first treatment, I got out of bed and walked barefoot on the tile without pain — something I hadn’t done in at least a year.

There’s homework, of course, that involves standing on a golf ball and rolling the ball all over the bottom of my feet, paying special attention to and lingering on the really tender spots. There are also a couple of exercises involving a 36-inch by 6-inch foam roller.

And then there’s the K tape

Kinesio tape. In every color of the rainbow, according to the image on ktape.com. The website is pretty glowing about this product:

“It’s designed for Professional athletes, Olympians, and active people world-wide who take health & fitness seriously and who refuse to stop training, playing, or living life active and free. The design is minimalist, the results are magic.”

That’s me: I refuse to stop training playing, or living life active and free. Bring on the magic!

I’d had K tape before, when I was treating my PF myself, and again when I started seeing my lovely lymphedema specialist, Tammy. She’s a certified K tape master. She’s been using K tape on my post-mastectomy chest and now on my post-reconstruction belly. I’m a believer in the magic of K tape. As part of the scar-tissue-management on my 17-inch-long incision on my belly, Tammy puts a couple of strips of K tape and we wait for the magic happen.

So when Dr Kelly wanted to tape my feet after my first treatment and asked if I’d ever heard of it, I said as a matter of fact, I have some on my belly right now. We hadn’t been through the whole song & dance about the BC business; I was hoping to keep the BC beast out of the sports medicine arena. Well, the elephant was certainly in the room when I mentioned I had K tape on my belly. In for a penny, in for a pound, and I had to explain. 

Yes, those are bruises just above the shorter piece of tape. If you’re fluent in the language of torture, you can probably tell that that’s how Dr K signs his name.

Dr Kelly seems to be a bit competitive, and wanted to tape me up real nice so that Tammy, the other K tape master, would approve. She did. And then she took it a step further. I guess she’s a bit competitive, too.

Instead of just using a couple of strips on the scar tissue on my belly, Tammy used a new technique she’d just learned at a K tape workshop. Could this be Turf Wars part deux? 

I can’t wait to show this to Dr Kelly. The battle of the K tape is on!

I hope neither he nor Tammy sees this K tape image and gets any big ideas:

googleimages.com

I’m ok with the crazy blue racing stripes on my legs & feet, and with the Frankenstein pink on my belly and over my new belly button, but I’m drawing the line at a pink ribbon made from K tape. No thanks!