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The elephant in the bedroom – yeah, I talked about sex after cancer treatment

3 Aug
elephant

Illustration by Kimberly Carney / Fred Hutch News Service

Sex after cancer is complicated. You know what else is complicated? Writing about sex after cancer.

I tackled the topic last week in a two-part series for FredHutch.org. And even though it felt like I was walking around in my underpants when the stories came out (I talked a little bit about my own experience in this realm), I’m glad I covered it because it’s a big issue for cancer patients and it doesn’t get a ton of attention.

As I said in the story, cancer cuts us to our sexual quick. We lose body parts. We lose our libido. Oftentimes, we lose our sexual selves. Men struggle with impotence; women are plunged into menopause decades before they would naturally arrive; and many are left to sort it all out on their own.

Why? Because people often don’t feel comfortable talking about this stuff – not doctors, not patients, not even their partners. Sex after cancer has become the elephant in the bedroom.

Here’s a link to Part 1, which covers the sexual aftermath of cancer treatment and how surgery, chemo, radiation and hormone treatments — all those things they do to keep us alive — can cause all kinds of sexual side effects, from fatigue and body image issues to erectile dysfunction and vaginismus.

And here’s Part 2, which offers a few experts tips and tricks that we as patients can use to hack our post-treatment sex life.

As I said, it’s not easy to write about this stuff or talk about this stuff. So I’d like to give a huge shout out to two amazing patients: stage 4 anal cancer patient Michele Longabaugh and testicular cancer patient Jon Dibblee. Both were kind and courageous enough to talk about the sexual challenges they’ve faced since treatment and I can’t thank them enough for their candor and insights. Many thanks, also, to Nicki Boscia Durlester and her private breast and ovarian cancer Facebook group, Beyond the Pink Moon. It’s so important to have safe, supportive places like this where patients can bond and bare all.

Did your cancer and treatment lead to sexual side effects? Did your doctor downplay the damage or mention it at all? Let me know in the comments section. Still have more to say? Please join me and the folks at Fred Hutch  tomorrow (August 4) at 10 a.m. (Pacific) for a tweetchat on the topic. Use #ChatFredHutch to join the conversation.

tweetchat image.png

Coming to terms with your post-cancer body

7 Mar
Photo by Robert Hood / Fred Hutch News Service

Photo by Robert Hood / Fred Hutch News Service

Once you’re flagged as somebody who might have cancer, you’re basically strapped onto the world’s worst carnival ride.

The ride starts off slowly at first with biopsies and consultations but then once you’re diagnosed, it picks up speed. Then there are scans, MRIs, surgery appointments, oncology consults and shopping excursions to buy things you’ve never heard of like surgical camisoles. Suddenly, the Merry-Go-Round or Tilt-a-Whirl or whatever it is starts going at breakneck speed. You go through surgery, you go through chemo, you go through radiation, you do it all. You get used to this new reality, this tumultuous spinning wheel of blood draws, port infusions, belly shots of Neulasta, daily blasts of radiation. You go around and around, back and forth, up and down, over and over. You’re strong and on top of things one day; you’re addle-brained and couch-bound the next. You spend all of your time in pajamas and patient gowns. You forget how to talk to people. You forget who you are. You’re bald, boobless, beaten down and burned to a crisp. And then suddenly, you’re pushed off the Tilt-a-Whirl or Octopus or whatever it is and told to go back to your normal life. The ride is over.

The only problem is, you’re still spinning.

Ever see somebody get off a high-speed carnival ride that’s suddenly stopped short? They stagger. They lurch. They might even walk into a pole. Or do a face plant onto the sidewalk.

That’s what life after cancer treatment was like for me: a great big WTF. I couldn’t trust the ground under my feet. I couldn’t trust my own body. I couldn’t even trust the reflection staring back at me in the mirror.

I tried to capture what it was like coming back from that and coming to terms with my new body and my “new normal” in this latest essay for FredHutch.org.

Writing about post-cancer body changes – and body image — has, by far, been the hardest thing to put into words and share with others. To be honest, it feels a lot like showing up at work in your underwear. But as vulnerable as it makes me feel to put this out into the world, I think it’s important to let people know about the collateral damage of treatment. And let other cancer peeps know they are most certainly not alone.

As always, thanks for the read, people.

What if people treated other cancers like they do breast cancer?

15 Sep

I’ve been recuperating at home the last week or so, healing up after my fourth and FINAL breast reconstruction surgery (just need to “dot the i’s” and I’m done, folks – high five!). Anyway, like any good invalid, I’ve spent most of my time watching Netflix, devouring books and reading social media posts from friends, colleagues and fellow cancer buddies.

I especially liked But Doctor I Hate Pink’s recent call-to-arms, Pinktober, Metastasized, a series of blog posts that takes on a few of the more inane “awareness” campaigns that have popped up so far.

As most women with breast cancer can tell you, the month of October is a huge pink clusterfuck. There are your Boob-A-Thons, your giant bouncing boob races, your Save The Ta-Ta’s wet T-shirt contests (because women who’ve been forced to have mastectomies love nothing more than having healthy normal breasts shoved in their faces). Stores sell everything from pink clogs to pink stun guns with a fraction of the profits going towards yet more “awareness” as opposed to research which could, hello, save women’s LIVES not just their boobs. Even the NFL, which has so clearly demonstrated its love of women in recent days, gets into the act with pink cleats and pom-poms. As I mentioned, a clusterfuck.

Follow the bouncing boob. More importantly, follow the money.

Follow the bouncing boob. More importantly, follow the money.

Particularly annoying are the wrong-headed campaigns encouraging women, including survivors and metavivors (women with metastasized breast cancer who are not exactly “surviving” this crap) to post cryptic and vaguely sexual status updates on Facebook (“I like it on the floor!”), don T-shirts adorned with vapid boob-related slogans or bedazzle their bras (provided they still have them) with lace and sequins, again all in the name of breast cancer awareness.

But Doctor I Hate Pink does a great job of taking on these egregious offenders in her posts (she’s also started a cool new #mycancerisnot4sale social media campaign to fight the pink profiteering). “After five years of being truly, horribly sick, I can tell you that [breast cancer] is not a cute, fun little disease that you can play with or have a party about,” she writes. “Breast Cancer is the most trivialized disease in history … Do they have a tighty whitey decorating party for anal cancer?  Let’s put a little brown glitter around the back end of the underwear, hey? Maybe some red sequins to show one of the signs that cancer lurks in that area? Yeah, let’s tell that cancer story through decoration.”

I love her feistiness and her humor and I especially love her point. You really don’t see other cancers – lung, liver, colon, bladder, prostate, anal, cervical, ovarian, etc. – being trivialized and/or sexualized in the same way that breast cancer has been over the last decade or so (although there is a rather interesting “put your cock in a sock” testicular cancer campaign currently rampaging through the interwebs).

What would it be like if other cancers were treated in the same ridiculous and demeaning fashion that some of these PR geniuses and clueless clods treat breast cancer? Read on to find out (with sincere apologies for those going through colon and testicular cancer). My edits are in italics. The rest is verbatim. As always, looking forward to your thoughts.

NATIONAL BRA (Breast Reconstruction Awareness) DAY promotion letter 

Testicles are so much more than just “the boys” or “gonads.” They’re fabulous. They make us feel sexy, whether we’re in our best outfit, lounging around in our favorite flannel PJs, or just bare butt naked (sic). This fall, we want to spread this sensation of beauty and testicle empowerment to testicular cancer patients and survivors, as well as men nationwide.

Many men who undergo orchidectomy aren’t adequately informed about reconstruction options and reimbursement.  In order to help raise awareness of these available options, we’re celebrating National TRA Day 2014 with a grassroots social media campaign using the hashtag #WHATSUNDERHERE.

Each participant receives a pair of boxer shorts with the #WHATSUNDERHERE hashtag on the front. In addition to the shorts, each kit comes with a set of cards with fun and thought-provoking sayings, such as: “Is Cancer Free,” “Looks Great Naked,” “Will Not Take Cancer Lying Down,” among others.

NATIONAL ‘NO BRA’ DAY – Facebook post from July 2011 

Colons are Fantastic… We all think so. And what better way to express the way we feel than to support a full day of colon freedom?? Humans are magnificent creatures, and so are their colons. Let us spend the day unleashing colons from their colon zoos.

Support breast cancer? Really? Does this hideous disease really need our SUPPORT?

Support breast cancer? Really? Does this hideous disease really need our SUPPORT?

People, free your colons for 24 hours by removing those dreadful (but at times oh-so-helpful) underpants. Our poop chutes should not be hidden! It is time that the world see what we were blessed with. Your colons might be colossal, adorable, miniature, full, jiggly, fancy, sensitive, glistening, bouncy, smooth, tender, still blossoming, rosy, plump, fun, silky, Jello-like, fierce, jolly, nice, naughty, cuddly… But the most used adjectives to describe your colons on this day should be joyous, wild, and spectacular.

Everyone can participate! If you don’t want to free your colon, then your job will be to support everyone else by rocking something brown. It can be a brown tie, brown boxers, brown socks, a brown Colon Cancer Awareness Ribbon, I ♥ Colons Bracelet…. If it is brown, it supports us. (Your support means quite a lot to us…)

**If wearing underpants on this day is absolutely necessary, you can definitely show your support by wearing something brown.**

Yay for colons!

Pardon my dust …

23 Aug

under construction signJust a note to let you know this site is under construction. Not the website: me.

Since January 2013, I’ve been working with a great plastic surgeon at UW Medicine to reconstruct my girls, lost to breast cancer in April of 2011. I had high hopes that I’d be able to keep all of you up to date on my progress, but between the multiple surgeries, the creepy complications, the healing process, the physical therapy, the emotional upheaval, the fabulous new job (took a full-time writing gig at Fred Hutchinson Cancer Research Center in January) and my other much-less-fabulous job – dealing with the aftermath of breast cancer and treatment – I’ve just been too dang busy.

So instead of beating myself up about not putting up a blog post every ten minutes (or ten months, for that matter), I decided to post this electronic version of a yellow “Under Construction” sign.

My next surgery is slated for early September. Yep, just a few days away. I’ll be going through more micro fat transfer (i.e., having fat liposucked from my lower body and injected into my top, particularly Lefty, who had rads) plus swapping out my cereal bowls … er … tissue expanders for “real” implants. I’ll still need nipple construction and tattooing after that but those procedures should be a little easier. Famous last words, right? ; )

If you’re looking for a laugh, here are a couple of links to recent essays on TODAY.com.

Chemo curls: How cancer, and my new hair, helped me grow

Not your Mrs. Robinson fantasy: The brutal truth of dating after 50

And if you’re curious about what I’m doing in the new job, please feel free to check out my stories at www.fredhutch.org.

Thanks for stopping by and for your patience and support as I make my way down the long road to reconstruction. Looking forward to catching up with you all once the dust settles.

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.

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.

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.