Reconstruction is not a boob job and other scary stories

31 Oct

October has been a bit of a crazy month for me. I had my second reconstruction surgery at the end of September – followed by a couple of post-op complications – so for weeks, I’ve just been trying to bootstrap my way off the couch and back to normal life. But since it’s Breast Cancer Awareness Month – aka Pinktober – I’ve also been busily cranking out essays and stories about the crab monster and the various ways it messes with our lives.  

Two of those essays went live today.  The first, for TODAY.com, is about how Reconstruction After Breast Cancer Isn’t a Boob Job. Anybody who’s been down the long road to recon knows this (and how), but there are still many people who think reconstruction is something that’s done as simple day surgery in a plastic surgeon’s office. Breast cancer? No problem! Here are your new magical boobs!

For all of those people who think building new breasts is as easy as baking a cake and all my BC sisters who’ve been through hell and back just to regain what cancer stole from them, a few thoughts on the subject:

It’s been nearly a month since my last surgery and the new girls are still a little scary looking. Righty’s recovering from a post-op infection that had me in the hospital on IV antibiotics for two days. Lefty’s missing most of her nipple, a casualty of my first surgery back in May.

They’re bruised and bandaged and look a bit like they’ve been in a bar fight. But they’re mine, thanks to the wonders of breast reconstruction surgery. Or as it’s popularly known, my “free breast cancer boob job.”

I’m being sarcastic, of course. Only a fool would confuse breast reconstruction with a boob job, but sadly, there seem to be a lot of fools out there.

I should know; I used to be one of them, until a radiologist uttered those three little words that have made such a difference to so many peoples’ lives: You have cancer.

After that, everything changed, including my understanding of what women have to go through to get their girls back. And trust me, it’s not easy and it’s not quick.

Unless you’re lucky. Or Angelina Jolie.

And here’s a link to the full essay.

The second piece, written for the Fred Hutchinson Cancer Research Center’s website, doesn’t specifically focus on breast cancer. In fact, many of these tips could apply to anyone diagnosed with a debilitating disease. It’s on 8 Things You Shouldn’t – And Should – Say To a Cancer Patient.

As always, I’d love to hear about your experiences, either with reconstruction or cancer comments that have left you speechless. Sorry for the short post but as I said, this month is crazy.  And it’s not over yet – today’s Halloween! Take care and thanks for the read, my friends.

Oversharing is caring

11 Aug

showandtellI was standing in line to check in at the plastic surgeon’s last week when a woman tapped me on the shoulder.

“Excuse me,” she said. “Did you write about your breast reconstruction for the University of Washington alumni magazine?”

I nodded and introduced myself and the two of us talked “shop” for a few minutes. She was fresh out of chemo and going in to consult with a plastic surgeon about recon before her double mastectomy. I was heading in to schedule my second round of fat transfer surgery but, as usual, was happy to discuss my chest with another BC buddy (and her husband, as it turned out).

I never talked about my boobs that much until I got breast cancer. Ironic, I know, since the creepy crab monster pretty much stole my boobs. What’s there to talk about, right? But since I was diagnosed, had a double mastectomy, stumbled through treatment and most recently, started down the path toward reconstruction, it seems like all I do is blather on and on about my girls.

And now, god help me, I’m not just talking about them – or writing about them – I’m baring my chest, and my soul, in new and very public ways.

Three weeks ago, I went in to see my oncologist for a quarterly check-up (blood work all came back fine, by the way) and afterward, went up to the surgeon’s office where I stripped down to show her and her colleagues the results of my first fat grafting surgery. It’s a new process and not that many doctors — or patients, for that matter — are familiar with it. I let them poke and prod and ask all kinds of questions about the science experiment I’m conducting on my chest. Not because I’m some kind of exhibitionist but because I’ve always felt knowledge is power and anything that I can do to help educate and inform other BC survivors and/or the people who treat them is worthwhile. 

I have to admit, though, the old me sort of watched in horror as one white coat after another moved in for a closer look at what I’ve come to call my “foundation” (after one round of Brava/fat transfer, I sort of look like a 10-year-old girl entering puberty). Before cancer, I would never have been so blasé about showing my boobs to a room full of strangers. Well, not unless it was Mardi Gras and I’d had more than one martini (kidding!). But after living with breast cancer for 2.5 years, I’ve grown accustomed to opening my gown to whomever happens to wander into the exam room. One of these days, I’m going to scare the bejesus out the janitor, I’m sure.

I’m not just showing off my girls in person, though. I’m also talking about them — on TV, no less. Last month, I was asked to appear on a Seattle talk show called NewDay NW, to chat about my madcap cancer adventure (still can’t use the word “journey”) with Justine Avery Sands, a 32-year-old BRCA gal, who opted for a prophylactic double mastectomy with immediate recon (otherwise known as “The Jolie”). I managed to get through the 8-minute segment without throwing up, fainting or dropping an f-bomb (TV still makes me nervous).

More importantly, I was able to get across some crucial points regarding mammograms, dense breast tissue, the importance of self-exams, and, I hope, through my attitude and demeanor, convey to others – particularly newly diagnosed sisters — that a double mastectomy does not destroy your sense of humor or your strength or your soul or your lust for life. Or your lust for anything, for that matter. Here’s a link for those interested in watching.

The intersection of cancer and self. August 2013.

The intersection of cancer and self. August 2013.

These games of show-and-tell have become part of my new normal. But sometimes I do wonder if I’m mentally ill for being so open and upfront about all my BC stuff. It certainly hasn’t done much for my dating life. I’ve had more than one enthusiastic suitor flee after discovering my high cancer profile (Google me and you’ll see what I mean). Whether they’re turned off by the cancer itself, by pics of me mid-treatment, or by my willingness to discuss the “C-word” publicly (without whispering or anything), I’ll never know.

I do know, though, that a year ago, I wasn’t able to have a conversation about my mastectomy with doctors or family members or friends without tearing up. These days, I’m talking – and even making jokes – about the whole ordeal on TV, in print and in line at the plastic surgeon’s.

I never set out to become the woman who talks about her boobs – or lack thereof — all the time. But I think I’ve been able to help others by serving up a few straightforward answers and insights (along with a healthy slice of attitude). As I mentioned in the interview, for me, sharing is caring. And also, apparently, therapeutic.

So what about you? Are you open about your breast cancer with everyone – even strangers — and if so, has it been a positive or negative (or both)? Or are you more stealth about your diagnosis and treatment? Do you think being open about BC helps you process it? Or is it just time, itself, that helps heal those wounds? Would love your thoughts. And as always, appreciate the read.

You are entering a reconstruction zone

6 Jun
Photo by Erin Lodi, Columns Magazine

Photo by Erin Lodi, Columns Magazine

It’s been a tough couple of weeks here at Recon Central. As I mentioned in my last post, I’m currently going through breast reconstruction, and contrary to the Hollywood version (i.e., a woman decides to get new breasts following her mastectomy and a half hour later is sporting a pair of perfect, perky boobs), my experience has been less than immediate. Or ideal.

Without getting too technical — or too graphic — let’s just say the body’s healing process can be excruciatingly slow, scary and gross. Especially when you’re dealing with radiated skin which is touchier than a hornet on steroids. I’m currently a month out from surgery and Lefty (my radiated breast) still looks like something you might see on The Walking Dead. But while it’s not pretty (or healthy — yet), the takeaway is that I actually have two small breasts where I only had well-developed pecs before. 

And that’s huge (the news, not the boobs).

For those who may not know, I’m doing a different kind of reon than most women (Angelina included). Instead of doing a flap procedure (i.e., where a plastic surgeon cuts a slab of tissue, muscle and blood vessels from one part of my body and sews it to my chest to make a boob) or going the tissue expander/implant route (radiation put me out of the running for that), I decided to use an external tissue expander known as the Brava coupled with fat transfer surgery.

Basically, the plastic surgeon “liposucks” fat from where you have it (goodbye saddlebags!) and injects it where you don’t (hello boobs!).

But before any of that happens, you have to prep the area with this crazy suction cup device known as the Brava. I started using the Brava – or the Barbarella, if you prefer – in early April and wore it for 10-12 hours a day for a month before going in for my first fat transfer procedure.  Wearing the Brava – or as I put it, serving time in “boob jail” — is a trip. The domes are huge and unwieldy and are about as subtle as having two roasting pans attached to your chest.

By wearing them, though, I was able to stretch the skin and promote the growth of blood vessels, both of which helped create a welcoming environment for the tiny droplets of fat my plastic surgeon injected during that first fat transfer procedure (I’ll need at least one more to get my “B-girls” back, by the way).

Not surprisingly, this cutting edge procedure piqued the interest of my editor at the University of Washington alumni magazine, Columns, who asked me to write a personal essay about my recon experience. As usual, I decided that sharing is caring (seriously, I hope this will help people understand what breast cancer and reconstruction can be like for women) and took him up on his kind offer. Here’s the top to the essay and a link to the whole piece.

As always, thanks for the read.  Also, BC buddies, if you’re willing to share your reconstruction stories, I’d love to hear them.

Reconstructing hope

It’s 10 o’clock on a Sunday night and I’m sitting on my couch watching Mad Men, a glass of red wine at my elbow. In many ways, it’s a typically tranquil spring evening — a cat on my lap, the lull of the television in the background — except for one small detail.

I’m in boob jail.

That’s the term I use to describe the two gigantic domes I’ve got strapped onto my unnaturally flat chest. Prescribed to me by my physicians at the UW Medicine Plastic and Reconstructive Surgery Clinic, where I am a patient, the Brava device, as it is officially called, involves two domes made of hard plastic with a thick gelatinous rim that sticks to your skin like bare thighs on a hot vinyl car seat.

There’s also tubing and a little motor and a blood pressure-type hand pump — all of which help you achieve the proper amount of suction. For the past three and a half weeks, I’ve spent 10-12 hours a day with this bizarre contraption suctioned onto my chest. And I have many more hours and days and weeks of boob jail ahead. Why? Because as annoying and cumbersome and claustrophobic as the device is, it — and my UW Medicine health-care team—are helping me do something rather spectacular.

They’re helping me grow new girls.

To read the full essay, click here.

Climbing back into the mouth of the beast

24 May

attack of the crab monstersFor those of you who haven’t noticed (as far as I can tell, there are about three who have),  I am the world’s worst blogger.  Or maybe I should say, the world’s most sporadic blogger.

When I was going through treatment, I blogged about the breast cancer beast a lot. Probably because treatment is pretty frigging surreal and you have to write about it and talk to other people who’ve gone through it, otherwise, you start to feel like maybe you’ve gone slightly insane. Nurses purposefully injecting you with poison? Technicians tying you up and easing you into a machine, then fleeing the room while they blast you with radiation? WTF? Who would do such a thing?

But that’s cancer and what the docs like to call cancer “treatment.” You come out of that crap and your hair starts to grow back and your strength returns and you just want to keep walking — or in my case, running — as fast and far away from Cancerworld as humanly possible. You want to forget it all and just live your life, worrying about the trivial crap you used to worry about BC (before cancer). I can’t meet any decent single men. Hrmph. I’ve got fun plans this weekend and now it’s going to rain. Waaaaaah!

You don’t want to think back to how hideous it was dealing with those drains after the double mastectomy or how your bones felt like they were being ground into powder by a giant during chemo or how horrifically ugly and dehumanized you felt every time you looked in the mirror when the doctors were finally through with you. Bald, board flat, chest burned to a crisp, I looked like a stand-in for Gollum from Lord of the Rings. Not something you want to keep on speed dial when it comes to calling up memories. I wanted to forget.  And part of forgetting for me, has been ignoring the fact that I’m supposed to be writing a breast cancer blog.

If you’ve been there, I’m sure you get it.

Also, if you’ve been there, I’m sure you understand how difficult it is to suck it up and climb back into the mouth of the beast yet again.

Don’t get me wrong – I’m not experiencing a recurrence or anything like that (knock wood). Instead, I’m currently going through the joys of breast reconstruction which for me has been every bit as difficult and painful and worrisome as the original surgery and treatment. And I’m just getting started.

I’ve had one surgery so far and am still very much in recovery from that. At this point, things are a little iffy and I’m hoping to write more about my recon and what’s happening with that in days to come. And that just might happen since my doctor has advised me to forget exercise and activities and basically just lie around my apartment like a three-toed sloth doing this incredibly boring thing called healing.

What the hell, might as well fire up the blog again, right?

For the moment, I can tell you that I went with a new type of recon known as Brava / fat transfer. Here’s a link to a story I wrote about it for TODAY.com last year. This type of recon is supposed to be less invasive than traditional recon, particularly those flaps, where the plastic surgeon cuts a slab of tissue, muscle and blood vessels from your stomach or your back or your inner thigh, sews it to your chest and magically turns it into a boob. 

I knew reconstruction was serious business going in, which is why I put it off for a year and a half after treatment. I wanted to make sure my body – and particularly my left radiated breast – had healed. I boxed three times a week to stay fit – and to keep those pectoral muscles full of healthy blood flow. I ran to keep my weight down (more accurately, to keep those tamoxifen pounds from glomming on) and to keep my heart rate good and strong.

I exercised to keep the beast from catching up with me again. And to get into shape for recon surgery. But it still kicked my ass.

I had my first fat transfer procedure two weeks and two days ago (May 8) and if this is the less invasive kind of reconstruction, I don’t even want to think about what my BC sisters who’ve had flaps and tissue expanders and implants have gone through. Seriously, the next time some moron refers to breast reconstruction as a “boob job,” I’m just going to coldcock ‘em – literally, metaphorically, whatever. As soon as I get my left hook and my right cross back, that is.

Anyway, I know this post is somewhat scattered. A little weak in some places, a little angry in others. A bit purple here and quite dark there. In fact, worrisomely dark there. But it’s also a pretty accurate reflection of what’s going on with my body right now. At present, I’m on antibiotics and don’t appear to have an infection. Yet. But things are starting to go sideways which, as anyone who’s dealt with cancer can tell you, is par for the course.

I’m trying to hang in there; I’m trying to be patient. And though it’s difficult, I’m trying to remember back to what I went through two years ago – the surgery that took my girls, the chemo that took my hair and my strength, the radiation that turned me into a crispy critter – taking comfort in the fact that I made it through all of that. I’m pretty sure I’ve got the strength – or maybe just the sheer orneriness – to get through this, too.

Hope you’re all doing well. Thanks, as always, for the read. And for those who might be interested in what I’ve been working on lately, here are a couple of links to recent stories I did for nbcnews/TODAY.com on breast cancer-related topics.

Mom’s virtual cancer family helps daughter cope with loss
Like an idiot, I wrote this story one day after surgery. I do not recommend this.

Breast cancer bras a no-go for Victoria’s Secret
The latest on the push (no pun intended) for a Victoria’s Secret “survivor bra.”

Breast cancer comes to Downton Abbey

8 Jan

halsted radical mastIt’s always interesting to see how breast cancer comes across on television (less so during October, of course, when all of those creepy pink stereotypes are hauled out of the closet). 

BC has been the disease du jour everywhere from Murphy Brown (yes, I’m dating myself) to Sex and the City to Weeds to this season’s Parenthood. Now, we have a new TV character facing a breast cancer scare, although “new” may be the wrong word, since the show is set in 1920.

Yes, breast cancer has come to Downton Abbey (warning: spoilers ahead!).

In the two-hour premiere of season three, which aired this last Sunday night here in the U.S., kindly Mrs. Hughes, the estate’s housekeeper, finds a lump in her breast and, after a bit of persuasion from her friend Mrs. Patmore (the cook), goes in for a biopsy.

What did a breast cancer diagnosis mean in 1920? That was the question one of my editors at nbcnews.com posed to me in an email Monday morning. I did some research, interviewed breast cancer surgeon Dr. Deanna Attai and wrote this story. The bottom line: breast cancer in 1920 was probably a death sentence.

“I think most cancers were,” Dr. Attai told me when we chatted via phone. “Just because of the fact they were diagnosed so late. Most of the time, patients had metastatic disease. They had very advanced disease in the lymph nodes.”

At this point in time, we don’t know if Mrs. Hughes truly has breast cancer or not. She has to wait two months for the results of her biopsy (and I thought waiting three days was bad!). If she does have it, her treatment options might include radiation, which was in its infancy at the time.

More likely, though, she would be subjected to the Halsted radical mastectomy, named for the European-trained Johns Hopkins surgeon who performed and heavily promoted it in the U.S.

If you’ve ever been haunted by the stark image of a concave, surgery-ravaged chest (this is the first image that popped into my head when my surgeon told me I needed a double), that’s a Halsted radical mastectomy. Along with the breast (and the tumor), the surgeon would remove all of the underlying chest muscle and all of the lymph nodes. Scarring was extensive and side effects like lymphedema (aka “milk arm”) and even arm paralysis, were common.

Even worse, this debilitating and disfiguring surgery was often performed without the patient’s knowledge, i.e., a woman would go in for a “quick-section biopsy” and wake up “wrapped in bandages from midriff to neck — bound like a mummy in surgical gauze.” Not only did she not have her breast(s), she had little information as to how to deal with the pain, the swelling in her arms or even what she was supposed to stuff in her bra in lieu of boobs. 

Referred to in one breast cancer book as “the greatest standardized surgical error of the twentieth century,” the Halsted radical mastectomy is no longer practiced, although it took until the late 1970s for the barbaric surgery to be phased out (the book, The Breast Cancer Wars, does a good job of detailing the history — and persistence — of the radical mastectomy).

Today, most breast cancer surgeons practice breast conservation, a term that always makes me wonder if breasts are becoming an endangered species.

But I digress.

What does the future hold for Downton Abbey’s Mrs. Hughes? Like everyone else, I guess I’ll just have to wait and see (I’ve become pretty good at living a “wait and see” kind of life these last two years). Since it’s television, my guess is they’ll milk the cancer plot for all it’s worth then give her a magical reprieve, much like Matthew Crawley, who miraculously recovered from his paralyzing war wound. Or she’ll become the newest member of the BC club and will die — or become completely debilitated by her “life-saving” surgery.

Whatever the case, I suppose the good news is that medicine has moved on — a bit, anyway — when it comes to treatment for this crappy disease. Nearly a hundred years later, we have chemotherapy and targeted radiation and tamoxifen and mastectomies that don’t leave us hollowed out and housebound. Nearly a hundred years later, a breast cancer diagnosis doesn’t necessarily equate to a death sentence.

Although, as Dr. Attai put it, “having breast cancer today is still pretty barbaric.” 

Word.

Boxing, blogging and trying to ignore the breast cancer beast

30 Oct

Photo courtesy of Jim Seida / NBCNews.com

Yes, I know it’s been a while since I posted anything. I’ve had a busy summer — hiking, baking, boxing and most of all doing this thing I like to call “pretending I never had cancer.”

But summer’s over and fall is here and with it, October, the month when it’s pretty much impossible to forget your breast cancer because everywhere you look people are dressed like gigantic pink ribbons and/or talking about their battle with the beast. And I suppose I’m no different.

I wrote a series of essays last October about my BC diagnosis, my double mastectomy and what it was like to go “out there” and date while going through breast cancer treatment, to try to find love in the time of chemotherapy.

My latest essay, published today on nbcnews.com/TODAY.com, takes up where those other essays left off, delving into some of the ripples you experience after diagnosis and treatment, as you try to navigate that weird territory known as survivorship.  Here’s a snippet:

There’s nothing like having cancer to make you appreciate the little things in life — like buying shampoo, running a few miles or being able to forget the address of the hospital where you were treated.

After I was diagnosed with breast cancer in February 2011, I felt like I lived at that hospital. Today — a year out from treatment — it’s in the rear view mirror, along with the double mastectomy and debilitating chemo and radiation I wrote about last October on TODAY.com.

Not that there aren’t still plenty of daily reminders regarding my year of living cancerously: chemo brain, adhesion pain, hot flashes (courtesy of my new BFF tamoxifen) and, oh yes, my board-flat Olive Oyl chest.

But there have been good, uh, developments, too.

The biggest one — for me — is that I now have hair. For those of you who think baseball is slow and tedious, all I can say is try watching hair grow sometime.

I disguised my bald head with a wig from mid-June until New Year’s Eve then gratefully ditched it, along with the tape, the itchiness, and the constant fear that I’d accidentally spin the thing around backwards while swing dancing like some character on Gilligan’s Island.

Come January, I let my freak flag fly and began rocking a dark gray micro pixie.

“With the wig, I was trying to pass as a healthy, normal woman,” I joked to my friends about my super short ‘do. “Now, I’m trying to pass as French.”

You can read the full essay — and check out more pics of me boxing! — here.  As always, thanks for stopping by. And please feel free to share your story — or favorite survival tip. We’re in this together, people.

Looking for a ‘shortcut’ to bigger better boobs? Breast cancer ain’t it

9 Jul

Elisabeth Dale of TheBreastLife.com asked me to do a guest post on her blog the other day, which worked out quite well because I was in the middle of a hissy fit about something I find particularly irksome: people who think breast cancer is some kind of golden opportunity to get “bigger, better boobs.”

Here’s the start to my post and a link to the website where you can read the whole shebang:

I was talking to a breast cancer buddy the other day — one of the lucky ones who found her cancer at Stage 0 and got away with a minor lumpectomy — and was amazed and horrified at something she told me.

Apparently, while she was still learning about the staging of her disease, a handful of her friends told her they thought breast cancer was a great opportunity to improve her boobs (my friend’s always been small-breasted). As in, “You should totally do a double mastectomy and then get the boobs of your dreams.”

As someone who’s not only had a double mastectomy but is also currently researching reconstruction, I’d like to offer a little insight into this idea that breast cancer is a convenient way to “upgrade” your girls.

To read more, click here.

I got the “Now you can get bigger, better boobs!” chestnut from a few people after I was diagnosed. And have heard other BC survivors talking about people who’ve thrown that at them, as well. What about you? Have people told you how “lucky” you are to be losing your old/small/droopy breasts to cancer because now you can get bright, shiny new ones? Let me know. Maybe we can start a mob. ; )

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