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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. ; )

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.

Kicking cancer’s sorry ass

10 Jun

I “celebrated” my one year chemoversary this week. Last year, on June 6, I was sitting in a blue Barcalounger up at Cancertown for the very first time, waiting for the nurses to flood my body with a deluge of drugs: some poisonous, some designed to help me withstand the poison.

Celebrate, of course, isn’t quite the right word. Who celebrates the onset of excrutiating bone pain, nausea, fatigue and hair loss? 

I am thrilled, of course, to be a year away from all of the pain and the powerlessness of last year’s chemotherapy. Although to be honest, I’m sort of going through it again now (sans the hair stuff) thanks to my latest obsession: boxing.

I’m not sure where my fascination with boxing came from. I used to work out at a gym where they had a speed bag tucked away in a far corner and I would play with it in between lifting weights and doing cardio, finally figuring out how to pummel the thing without having it pummel me back. It was therapeutic to pound away at all the stressors in my life — a cranky boss, a misogynistic coworker, a bad boyfriend.

After I quit the gym, I missed pounding away at the bag. So much so, that two decades later (at the age of 51 and a weight of about 190 pounds), I took a couple of boxing fitness classes at a Seattle institution known as Cappy’s. The class nearly killed me — I practically had to use the wheelchair lift to get on and off the bus afterwards — but I loved it. Unfortunately, my Achilles tendons didn’t. The jumprope warm-up exacerbated an old injury so I had to put my gloves on the shelf.

I didn’t shelve the exercise, though. I started walking and then running and then tap dancing and swing dancing. I also began watching what I put in my mouth and, to be honest, put a lot less in my mouth (I even managed to kick a lifelong friend — starchy carbs — to the curb). Within six months, I’d dropped 50 pounds and was feeling a lot better about myself and my body. At least, I was until I found a weird little tuck on one of my breasts.

Cancer had dealt me a firm left hook. And a right hook, as well, as it turned out. I had tumors in both my girls. But I made it through the surgery, the chemo, the radiation, and the recovery and now I’m hitting my one-year cancerversaries fast and furious.

You might even say, I’m knocking them out one at a time, thanks to the punches and combinations I’m learning in my new boxing class at Belltown’s Axtion Club.

That’s where I celebrated my chemoversary on Wednesday. And yesterday, I went back for my sixth session, an amazing feat considering that — just as before — the very first class nearly did me in. Each hour starts with an intense warm-up that begins with jumprope (my Achilles tendons have healed, apparently) and then folds in a slew of other exercises. There are footwork routines, medicine ball drills, punches and my personal favorite — one-handed push-ups. (The first time the trainer — a gorgeous South American demigod of a man — demonstrated these puppies, I nearly did a spit-take. Who does that?)

Thanks to the double mastectomy, the chemo, the radiation, and the fact I haven’t done a lick of upper body work for more than a year, I’m not even close to doing a one-handed push-up or these other ones that involve twisting one leg into some ungodly froglike position. I’m barely able to do two-handed push-ups. Girly style. But I give them my all. Ditto for the rest of the warm-up and the sparring that comes later. And so far, I haven’t embarrassed myself too much. Or at least I haven’t thrown up in class (according to the trainer, it’s happened).

But it ain’t easy. Nor pretty. Not knowing what I was in for, I wore makeup to my first class and by the end of the hour, my eyes were burning from a steady, sweaty stream of foundation and mascara and eyebrow powder (chemo took my brows so if I want ‘em, I have to paint ‘em on). These days, I go to class with only a hint of lipstick and not much else (yes, people, I am clothed). I even wear a headband, Olivia Newton-John style, because I’m such a Sweaty Betty, either due to the incredible workout my out-of-shape body is getting or the tamoxifen I take every day (it doesn’t give me hot flashes, but I’m definitely feeling the occasional hot flush). 

At the end of the hour, my head and body are sopping wet, my face is flushed and puffy and I look like a small, sweaty version of Billy Crystal, thanks to the out-of-control chemo curls. But I don’t care. Despite my long standing position as a girly girl, despite my overwhelming urge to “pass” (and trust me, the missing eyebrows are a dead giveaway), I’ve decided I’m not there to look pretty. Or normal. Or nice. I’m there to learn how to box. I’m there to get strong. I’m there to do whatever I can do to kick cancer’s sorry ass.

Am I crazy for pursuing a sport that makes me feel as nauseous, as fatigued, as overwhelmed by pain as the chemo I went through last summer? Maybe. It does feel strikingly similar to the infusion aftermath we all know so well, particularly a chemo session capped by one of those nice juicy Neulasta shots. You know, the ones that give you instant arthritis in your hands and feet.

The day after each boxing class, my hands ache from the punches I’ve given (and received). My arms can barely lift the blow dryer to dry my hair (ah, but what a miracle it is to have hair). It even hurts to pull my pants up after I pee. I’m beaten down, I’m bruised, I’m once again grabbing the furniture to hobble around my house. But then I take a few Ibuprofen and drape my body in ice packs and soak in a hot, hot bath filled with Epsom salt.

And then I get back up and do it again a couple of days later. Just as I did with the chemo. Just as we all do. Except this time, I’m going through the pain by choice. And this time, it’s not making me weaker, it’s making me stronger. This time, I’m transforming my body on my terms — through strength and endurance and sheer will as opposed to a surgeon’s scalpel. And this time, I can stop whenever I want. It’s just that I don’t want to stop — not yet anyway.

Not until I can get my scarred and poisoned and radiation-ravaged body to squeak out at least one of those wacky one-handed push-ups. Not until I can pound out a bit more of my grief and frustration and fear and, yes, pure unadulterated rage at being sucker punched by cancer.

Did your mammogram catch your breast cancer?

10 May

So I went to a boob show last night, otherwise known as the Breast Reconstruction Group at Seattle’s Polyclinic.

I’ve been once before and found it a great place to learn about all the different types of reconstruction out there — and trust me there’s a lot — as well as talk to women who are going through the various stages of breast cancer school. (Hey, if they can call it a journey, I can call it a school.) 

Some of the women were newly diagnosed and surgery-bound, asking questions about immediate reconstruction, just as I had when I went to my first BRG right after my diagnosis last year. Others were there to show off their newly reconstructed breasts so the freshmen and post-treatment/pre-reconstruction sophomores and juniors could see what kind of results they might expect from tissue expanders and implants or tram flaps or lat flaps or what have you.

While it’s always interesting to hear about reconstruction (especially now that I’ve cleared the six month post-rads mark and can actually start thinking about getting new girls), hearing each woman’s cancer story is even more riveting — and heartrending. Some of them had had more than their share of experience with the disease. They’d lost mothers (or even fathers) to breast cancer. Others were hit by a diagnosis like a shovel upside the head.

What struck me last night — and this seems to happen every time I hang with a group of BC survivors — was the number of women who didn’t find their cancer via an annual screening.

As some of you may know, I’m one of those women. My cancer didn’t present as a lump but as a small “tuck” just under the left nipple. After going to my ob/gyn (who assured me it was nothing but a cyst), I went on to get a diagnostic mammogram and ultrasound. Just like all the other times I’d had a mammogram (including the one 12 months previous), mine came back clean as a whistle. No lumps, no bumps, no funny business at all. But when they took me in for the ultrasound, it was a much different story. I had four masses — two on each side.

Here’s the problem: this is a story I’ve heard again and again from breast cancer survivors. Somebody will go in for their annual mammogram and walk out with a clean bill of health. Then three or six or nine months later, they’re diagnosed with stage 3 breast cancer, an aggressive cancer that could have — should have — been caught much earlier. Worse yet are the women who die because they put all their faith in a clear mammogram, even though one family member after another has been hit with this wretched disease. 

After my diagnosis, I immediately began lobbying my four sisters to go in and get checked out, pushing them to get their doctors prescribe ultrasounds as well as mammograms. My gut told me that the five of us share more than just a dark sense of humor and a penchant for antiques. I have dense breast tissue — which is why the mamm didn’t reveal the masses lurking in my breasts. I’m guessing my sisters are every bit as dense as me (so to speak).

Unfortunately, thanks to the way things are set up (with the insurance companies, with the medical providers, with the gods, etc.), you can’t simply request an ultrasound in lieu of — or in addition to — a mamm. Not even if you pay for it yourself. One after another, my sisters were told they could get mammograms, but unless there was something wrong with their breasts (or they had tested positive for the BRCA gene mutation), ultrasounds were not an option for them. Even though their sister had just been diagnosed with BC.

This kind of crap drives me crazy, especially as I read stories about the push to get moms to go in for mammograms as a way to celebrate Mother’s Day. Mamms are all well and good for some women, but they don’t seem to do squat for those of us with dense breast tissue. And there are a lot of us out there with this stuff. In fact, according to AreYouDense.org, a website devoted to exposing what it calls “the best kept secret,” two thirds of pre-menopausal and one quarter of post-menopausal women are saddled with dense breasts. Boobs that are full of connective tissue that appears white on a mammogram — same as a tumor — making it very difficult to see who does and who doesn’t have cancer.

And yet, millions of women consider their annual mammograms the end-all, be-all when it comes to their breast health. They trust mamms and mamms alone to tell them whether they have breast cancer.

Unfortunately, it doesn’t seem like those suckers can be trusted. Not on their own, anyway.

I’m not anti-mammogram. I know of at least one person who found their cancer during their annual screening so they absolutely do work for some women. I just don’t know how many. Or how often. Or how much the technician or radiologist has to do with the final results. Nor do I know why women aren’t automatically offered a choice of a mammogram or ultrasound (or both) when it comes to their annual screening. Especially when some states are more than happy to force a woman to have an ultrasound — at least a transvaginal one — if they’re thinking about terminating a pregnancy.

Last night at the Breast Reconstruction Group, a couple of the women talked about how confusing the world of breast cancer can be. “You have this choice, you have that choice,” one said. “I just wish there weren’t so many choices, so many decisions.” I understand exactly what she’s talking about. It’s confusing and upsetting and mind-numbingly horrific to have to sort through all the options one by one, especially as you get deeper and deeper into surgery, treatment and, finally, reconstruction.

Here’s my thought, though (and no doubt it’s a naive one). If women had a few more choices up front, maybe there would be fewer choices to be made down the line. If women were routinely told about their dense breast tissue and routinely allowed to have whatever type of screening they needed — or their bodies necessitated — maybe there would be fewer late stage cancers. Fewer mastectomies. Fewer rounds of chemo. Fewer deaths. And yes, fewer hissy fits pounded out by angry boobless wonders like me.  

So I’m curious, dear readers. Did any of you discover your breast cancer via your annual mammogram? Or did you discover it through self-exam? Or via MRI or ultrasound or a physical exam? Does anybody know why women — especially those with dense breast tissue — can’t automatically get an ultrasound and have it covered by insurance? Inquiring minds want to know.

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