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

3 Aug

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 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.

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Connecting and cancer whisperering

11 Jul
throwback Thursday pic - BC.jpg

Me in 2011, post double mastectomy and mid-chemo.

When I first started DoubleWhammied shortly after my breast cancer diagnosis in February 2011, it was because I needed a safe place to process all the mindblowingly weird stuff I was going through, to tear it up and work it out with equal parts rage, humor and F-bombs.

Cancer and its treatment were terra incognita for me back then – a large, black hole filled with fear and horrible misperceptions. I’d never known anyone who’d gone through breast cancer – or any cancer, for that matter – and was terrified that I was going to be disfigured and dead within months. At the very least, I thought I’d be transformed into some gaunt, sad scarecrow figure who shambled around the neighborhood, scattering children and dogs wherever I went.

A double mastectomy, three months of chemo, six weeks of radiation, four reconstruction surgeries and five years of tamoxifen later, I’m still here. The misperceptions – and the need to process – not so much.

Much has changed, in fact.

Instead of working as a freelance writer, penning pop health and humor pieces and dreaming of hitting that New York Times bestseller list, I’m writing public health news for Fred Hutchinson Cancer Research Center and advocating for patients in every way I possibly can. Helping people understand the disease, the treatment, the research and the progress that’s been made has become much more of a priority now.

me testifying

Testifying in front of Washington State legislators in June 2015

In a nutshell, I want to help those who don’t have it, avoid it; help those who do have it, get rid of it, and hold out my hand to those lurching up the cancer road behind me as so many others held out their hand to help me when I first diagnosed.

These days, I’ve become a sort of “cancer whisperer,” tapped by friends and friends-of-friends and total strangers when they or someone they love is handed a scary, unexpected diagnosis. Cancer is no longer a swirling black hole of fear for me. As a recently diagnosed friend put it, “It doesn’t freak you out like it does everybody else.” Cancer is still scary, of course, especially when the time comes for me to go in and have my six month oncology check-ups, but it doesn’t hold the same power over me it once did.

I know a bit more about the biology of cancer now. And I know a lot more about how researchers are trying to outsmart it. I’m even working with some of those researchers, taking their studies, screening guidelines, policy recommendations, cancer prevention tips and more and translating what can often be confusing scientific-speak into something usable and understandable. I’m also sharing patient perspectives with them regarding the shortcomings of treatment and care, the gaping holes in communication (I’m still hearing about women not being told they’ll lose all sensation after mastectomy) and the shenanigans insurance companies try to pull on those who are too sick to advocate for themselves.

I’m “cancer whispering” through each and every one of my stories for Fred Hutch, trying to help the public understand that lung cancer isn’t just a smokers’ disease, that stage 4 breast cancer is very different from early stage breast cancer and that a person’s cancer isn’t over just because their treatment is.

In five years, I’ve basically gone from freaked out cancer neophyte to fledgling patient advocate, which seems to be a natural trajectory for many cancer patients. The more suffering you see (or experience), the more you feel compelled to help. Some people do this by holding fundraisers or creating cancer nonprofits and online cancer communities. Others attend ASCO  or AACR and blog about new research or testify before lawmakers to increase awareness and funding or send cheek swabs to strangers in lab coats in order to expedite crucial research.

A few of them (I’m looking at you, Beth Caldwell), do it all.

I’m not much of a fundraiser or businessperson, but I do know how to tell stories. And share information. And connect people. So I’m doing that.

me and corrie

Me and the amazing Corrie Painter of the Metastatic Breast Cancer Project during her recent visit to Fred Hutch.

What that means for those of you reading this is that rather than blogging, I’m throwing most of my energy into my work at these days. And while there aren’t as many F-bombs in the stories I write there, you will find a slew of stories and service pieces to help you and your loved ones navigate the crazy carnival ride that is cancer.

Not to mention a whole lot of science. Some of which is actually starting to make sense (well, maybe not that whole zinc finger thing).  ; )

If you’re coming here for the first time as a newly diagnosed breast cancer patient, please feel free to start from the bottom of the blog and read up. You’ll find a ton of information about breast cancer surgery, chemo, radiation and reconstruction. There’s also good information, insights and inspiration in the many wonderful comments other cancer patients have left over the years. If you’re an old friend, this is just a note to let you know why the blog has long stretches of radio silence.

As always, thanks for the read and your ongoing support as the two of us – me and my spotty online persona DoubleWhammied – continue to morph and grow and carry on our mission of kicking cancer’s sorry ass one step, one story, one bad joke at a time.

Peace out and #FUcancer!

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

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

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

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, 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.