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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.

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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.

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. ; )

Jodi Jaecks: breast stroke of genius

23 Jun

Jodi Jaecks, superstar survivor. Photo by Kelly O./ The Stranger

It’s been a big week for me with regard to breast cancer news. Not my own personal breast cancer news — nothing much has changed there — but stories I’ve reported on. First, my editors at msnbc/TODAY.com asked me to write about Jodi Jaecks, the Seattle breast cancer survivor who went up against the Seattle Parks and Recreation Department over her right to swim in their pools — sans bathing suit top.

Jodi, who I met up at Cancertown a few months back, had a double mastectomy in March of last year, followed by additional lymph node surgery and a few rounds of chemo. Like many of us, she’s now trying to reclaim her life — and her athleticism — while dealing with the nasty side effects of her treatment: namely lymphedema and chest wall neuropathy. 

Thanks to the lymphedema, a lot of activities are off the list. But swimming, a suggestion that came up during a post BC treatment support group we both attended, seemed like something that might be both active — and therapeutic. I’m not a swimmer (hate getting wet) but the thought of water splashing against my aching chest sounds incredibly soothing.

Jodi, who doesn’t wear prostheses and isn’t going in for reconstruction, checked out Medgar Evans Pool in Seattle’s Central District then — out of courtesy — told the pool people she would be swimming there without a top. When you don’t have boobs or nipples and you don’t feel the need to fake it, why bother, right?

Well, the Parks people decided they needed to think about that. Which they did for a couple of months, leaving Jodi twisting in the wind. Finally, a few weeks ago, they told her swimming topless (despite the fact she has no “top”) was unacceptable and that she had to wear “gender-appropriate swimwear.” I suggested she show up in some early 1900s Victorian swimsuit– complete with parasol — but she wisely decided to go to the Seattle alternative newspaper, The Stranger, instead. They broke the story this last Wednesday. By Thursday, her story had gone viral — hitting both local and national audiences (including my readers at msnbc/TODAY.com). By Thursday, the Seattle Parks and Recreation Department had also decided to change their tune. Now, not only Jodi can swim there topless, but other breast cancer survivors will most likely be able to do the same in days to come.

I know I’m supposed to be the ever-objective journalist but I’m also somebody who has to look at a surgery-ravaged body every day and tell myself that I’m okay, that I have nothing to be ashamed of, that I’m still beautiful and normal and acceptable. It’s not easy to do this, especially in a society where breast worship is practically an organized religion. Policies that make cancer survivors — or anyone who’s a little different — feel ashamed of their bodies and their determination to heal need to be identified and overhauled. And if necessary, just plain jettisoned. Jodi’s willingness to come forward and tell her story helped do just that.

“It started as a personal fitness issue but once they said no to me, it became a far greater overarching political issue,” she told me when I interviewed her. “Ultimately, I just want to remove the stigma that women with breast cancer have to endure.”

Cheers to that, my friend. Cheers to that. It’s hard enough facing the mirror — and the fear — without some bureaucracy making you feel like a freak. Breast cancer awareness isn’t about pink power tools and fun runs, people. It’s about knowing what a double mastectomy looks like. It’s about learning about the side effects of what is still an incredibly barbaric surgery. It’s about letting survivors do whatever they need to do to heal. Not off in some dark corner full of well-worn ribbons. But out in the light — where it counts.

One more note: I think it’s appropriate to send a shout-out to Christopher Williams, the superintendent of the Seattle Parks and Recreation Department (and a cancer survivor) who only found out about Jodi’s treatment this week but quickly took steps to right an egregious wrong.

Have you been discriminated against because of your breast cancer — or any cancer? If so, I’d love to hear about it.

Also, stay tuned for part two of my exciting breast cancer news-filled week, where I talk about my story regarding the new fat grafting method of breast reconstruction.