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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.

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Oversharing is caring

11 Aug

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

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

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

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

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

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

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

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

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

The intersection of cancer and self. August 2013.

The intersection of cancer and self. August 2013.

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

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

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

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

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.

What we talk about when we TalkAboutHealth.com

1 Feb

As many of you know, there’s nothing I like better than to blather on incessantly about my life, my dates, my “battle” with breast cancer (a word that always makes me feel like I’m jousting with this despicable disease), and anything and everything else under the sun.

Well, as luck would have it, I was actually asked to officially blather on about some of these topics by the fine folks at TalkAboutHealth.com, a website “where patients and caregivers get personalized, helpful, and accurate answers from experts, survivors, and partner organizations.”

The format is pretty simple. Members post questions and I (and countless others) answer them. So far, I was asked about the “tuck” on my left breast (the small, subtle clue that led me to discover my cancer), about my nipple and skin sparing surgery and about how — as a single woman — I managed to get the support I needed while going through cancer treatment.

I’ve still got a few more questions to answer (they’re about dating, so I’m saving the best for last), but if anybody wants to check out my thoughts on the above, here are the links. As always, thanks for the read and would love to hear your input!

Would you further elaborate about discovering the “tuck” under your breast and describe it? How did you know to tell your doctor about it?
I first noticed the tuck after losing about 45-50 pounds through diet and exercise. It was maybe about 3/4″ long and looked a bit like tiny elves had stitched a “seam” along the inside of my breast just under my left nipple. The tuck didn’t hurt and didn’t really bother me all that much until I noticed that whenever I raised my left arm, my breast would “crumple” in a bit. That seemed more disturbing to me.  Click here to read the rest.

Would you share your nipple and skin sparing surgery experience?
I was completely undone by my breast cancer diagnosis and even moreso by the news that my only surgical option was a double mastectomy (the location of the tumors, the number of tumors and the small size of my breasts disqualified me for lumpectomy early on). My breast surgeon thought I might be a good candidate for nipple and skin sparing, though, and I embraced that option immediately. Click here to read the rest

As a single woman, where did you get the support you needed while going through cancer treatment?
I’ve been single for most of my adult life and have even developed a bit of a writing platform regarding the single life with a book (How to Date in a Post-Dating World), an anthology of essays (Single State of the Union) and a humor column (Single Shot), published by the now-defunct Seattle P-I.

For me, singledom is a natural state. Instead of being cloistered away as one half of a couple, I have a huge circle of friends — people I’ve worked with, people I’ve gone to school with, fellow writers, gal pals, neighborhood buddies, drinking buddies, old boyfriends, sources that turned into friends, the list goes on and on. I also have four sisters, all of whom I’m close with. I had so many people I needed to tell about the breast cancer, in fact, I eventually started an email newsletter (the Cancertown Gazette). And then a blog (www.doublewhammied.com). Click here to read the rest.

The Carrie Bradshaw of breast cancer

15 Jan

When it comes to breast cancer, are men bigger boobs than the ones we lost?

I got a great question from one of my readers named Vanessa the other day about a subject that’s near and dear to my (dark, dysfunctional) heart: dating and breast cancer

“When you start dating someone,” she asked, “how do you tell the person? When do you tell them? Any advice is greatly appreciated.”

As it turns out, I was just interviewed by Judy McGuire (aka the Date Girl columnist for the Seattle Weekly) about this very topic (click here for a link). I’ve also written a reported piece about dating with breast cancer for Match.com’s online magazine Happen (here’s a link) and talked about what it was like for me trying date while going through treatment in my TODAY.com essay, Love in the Time of Chemotherapy.

I guess all of these dating stories, plus the fact that I used to write the Single Shot column for the now-defunct Seattle P-I, and have also written a funny dating manual (How to Date in  Post-Dating World), is why one of my BC buddies on Twitter started referring to me as the “Carrie Bradshaw of breast cancer.”

Jeez, now that I think of it, I even have my own Mr. Big.

But back to Vanessa’s question about the hows and the whens of telling a date about your breast cancer.

Post surgery, post chemo, post radiation me, getting ready to go out. I've got on my war paint and my prostheses. Fake it til you make it, baby. ; )

I’ve done quite a bit of dating this past year, despite the surgery, the chemo, the radiation and the challenges of post-treatment Limboland. Some of the guys already knew about the breast cancer, which made the “big reveal” a moot point. Others — like the men I’ve met on online dating sites — didn’t have a clue, namely because I work hard at what I call “passing,” i.e., looking as “normal” as possible.

What does that mean? It means no pajamas, no pallor, no cancer beanie — instead they (and everyone else) get skinny jeans and black boots and maybe a vintage leopard coat. I sometimes feel like a drag queen getting ready to go out and about in the world, especially when I’m getting ready for a date. First, there’s the wig (made of my own hair), then there’s my gummi boobs (tucked into a pocketed Spanx black bra), then there’s the makeup, in particular my painted-on eyebrows. (Thanks to Laura Mercier eyebrow powder and a Bartell’s eyebrow brush, no one knows my eyebrows were lost to chemo.) During rads, I even wore my V-neck shirts backwards — Audrey Hepburn style — so no one would see the radiation burns.

In a nutshell, I do whatever I can to look like a happy, healthy, stylish 42-year-old. FYI, I’m also trying to “pass” with regard to age — I’m actually 53. ; )

Anyway, I can usually get away without telling a guy about the breast cancer for 2 or 3 dates (by then, I’ll know if I want to see them again and whether I need to bother telling them).

Unless, of course, they try to kiss me. That’s when things get dicey, mainly because a lot of guys will try to grab the back of your head when they move in which means they’ll feel the wig cap and know something’s up. I even had one guy try to run his fingers through my hair at the end of the date to tell me how pretty it was.

“Next time I see you, I’ll tell you a secret about my hair,” I told him as I jumped out of the car, sensing a bit of confusion on his part. (Did the wig shift? Did he feel the cap? I don’t know, but I did tell him about the breast cancer on our next date and we’re still in touch).

As for specifics about the “how to tell him” question? A lot of times, I’ll start by asking the guy if he’s Googled me, since I’ve written about my breast cancer in some pretty high profile places (sometimes I wonder if I’m trying to tell every single guy in the country at once so I won’t have to go through the reveal date by date). Most often, they haven’t, so then I’ll usually try to find an appropriate moment (i.e., once they’ve started drinking) and then basically just blurt it out.

Home from a date in my vintage leopard coat. The coat’s faux fur, but the wig’s made from my own hair!

I don’t think there’s any right or wrong way to do it, but if you can tie it in somehow with something they’ve told you (like a friend who’s been through a health scare or a recent health situation of their own), that can make it easier.

I usually don’t go into too many details, i.e., no gruesome stories about chemo or surgery or anything like that. I’ll just stick to the basics, i.e., “Sorry to hear about your knee surgery; I just went through this whole breast cancer thing last year myself.”  After that, I’ll usually tell them I’m wearing a wig because of the chemo. And will sometimes tell them I’ve lost my girls but will be getting them back after reconstruction. Sometimes, I don’t even go there, though, since some men get too caught up in the whole boob thing (I had one guy not only ask when exactly I was getting the reconstruction but how big my new boobs were going to be).

The best news, I’ve found, is that talking about your breast cancer with a potential romantic partner is not the end of the world. I’ve had a couple of stinkers who’s slunk off into the shadows (they weren’t boyfriend material anyway and I was delighted to be rid of them). And I’ve had some guys ask dumb questions, like that old fave: “Soooooo, what are your odds?” The majority of the guys, though (and we’re talking maybe a dozen or so), have responded very positively overall. I mean, they’re sorry that I had to go through this crap, but they’re not daunted by the fact that I don’t have boobs or long hair or that there may be another cancer scare — or a shortened expiration date — in my future.

A couple of men with whom I’ve gotten closer to have even seen me without the wig and are not only completely cool with the fact I don’t really have long hair, they think I look cute as hell with short, short hair. So there you go.

Maybe it’s the fact that I’ve had nearly a year to process this crap so I’m much more comfortable with it. Maybe it’s my matter-of-fact (dare I say confident?) attitude. Or who knows, maybe it’s that vintage leopard coat. Whatever the case, though, I’ve found that dating with cancer is totally doable.

Now if only we could find some guys with that same quality, eh Vanessa?  ; )

In search of holiday redemption

24 Dec

So a funny thing happened a week ago Friday while I was out Christmas shopping. I ran into the ex who dumped me after my breast cancer diagnosis.

While this was the first time I’d seen in him in about nine months, it wasn’t the first time we’d talked. Ironically, he’d called out of the blue the night before my Cancer Kiss-Off: Getting Dumped After Diagnosis story ran on Today.com. Talk about timing.

Not surprisingly, that initial phone conversation was pretty awkward, but at the heart of it was an apology, which was incredibly therapeutic for me to hear. After all, the guy had disappeared on the eve of my double mastectomy, with nary a phone call or text to see if I’d come out of the thing alive. I don’t remember a lot from that call except that he did say that he was sorry for abandoning me and that he was concerned that his disappearance might have adversely affected my healing.  I remember thanking him for being man enough to tell me that and informed him that I was healing just fine, thanks to my strength and fitness level and all the love and support I’d received from family and friends. I remember, also, that I didn’t cry or scream or whine or call him names, although I did mention that a friend of mine had just the day before referred to his behavior as cold. And perhaps heartless.

Then all of a sudden, that cold, heartless guy was looking up at me as I was coming down an escalator at Pacific Place, a swanky shopping center in downtown Seattle. I got off the escalator and the two of us walked a little ways, stopping in front of the windows of Barney’s. He said I looked good (I figured he imagined I’d still be wearing a hospital gown and pushing an IV pole); I said he did, too. We then indulged in some polite holiday chitchat about who we were shopping for and so on and so forth, until it was time for one of us to address the 5,000 pound elephant lying on the shiny tile floor between us. I told him I still had lots of questions about what had happened and that I often wondered if he’d been in a car accident or arrested or perhaps been stricken with amnesia. What else could prevent a so-called friend — and lover — from picking up the phone to make sure I’d survived surgery? He apologized again and talked about his tendency to “unplug” when things got out of control. He then provided some additional information about troubles he’d had on his end — with work, with family, with money, etc. — qualifying it again and again by saying it was nothing compared to what I’d been through.

We talked for about 15 or 20 minutes and then it was time to go. He told me, for about the fifth time, that he was amazed I was even speaking to him. “It’s been a tough year,” I told him. “And life is short. I don’t want to carry around a bunch of anger and bitterness.” Besides, I said, gesturing towards the holiday shoppers, the decorations, the tree, the tinny carols, “It’s Christmas.”

I walked away feeling pretty strong about the whole thing until I got back to my neighborhood. That’s when I ducked into my local watering hole and downed a martini in about fifteen seconds flat, then text messaged about 17 girlfriends to let them know what had happened. Not surprisingly, I was suddenly very shaky. It wasn’t that this guy was the love of my life and seeing him again had completely done a number on my heart (it had been bruised, to be sure, but not completely battered). It was more that seeing him was like riding a bullet train back to those early days of diagnosis: the punch to the stomach when I learned about the four tumors that lay hidden in my breasts, the gut-wrenching news that I was going to lose my girls. Followed by my hair. And if luck decided to take another bad turn, my life.

Incredibly, he called the following Monday night and we talked again. Along with some mundane updates on where we were with our lives, there were more explanations and more apologies. I explained to him a bit of what I’d been through  — “Yes, my hair looks different because I’m wearing a wig” — without going into too much detail (I was the first person he’d ever known with cancer and I wanted to try to educate him about the disease a little). He talked about how upsetting it was for him to be completely unable to fix things when they go wrong and that he sometimes just had to walk away when things were too broken. Like me, I guess. He alluded to the fact that the cancer was scary to him (yeah, I know what you mean, buddy). Then he told me that he was going to have to live with the guilt over the way he had treated me for the rest of his life.

“Well, I guess my job is done then,” I told him, laughing. It’s hard for me to remain serious about anything for too long — bad relationships, breast cancer, the abuse I suffered as a child. Joking about these things is the only way I can maintain power and control over them.

Then out of the blue, I asked if he would like to work off some of that guilt. “I need somebody to take my air conditioner out of my window,” I told him. “You did it for me last year. Maybe you wouldn’t mind coming over and doing it again?” He was there the next night and had the air conditioner in its box and in the closet before he’d even taken of his coat. He also had a Christmas present for me, a completely unexpected act of kindness (or guilt-induced kindness) that I still find sort of puzzling.

To be honest, the whole thing is sort of puzzling. I know that his disappearance was devastating to me at the time, even though deep down I knew our fledgling relationship was probably doomed from the start, with or without the complication of cancer. But that devastation wasn’t just due to his disappearance. It was also about the diagnosis, the surgery, the loss of my breasts, my health, my wholeness. Nine months later, it’s almost impossible to separate the strings.

The ex and the cancer are so inextricably linked, in fact, that it’s almost as if my breast cancer has suddenly shown up on my doorstep to apologize for fucking me up. Which, I have to say, is not an unwelcome turn of events. Part of me realizes that this is ridiculous, of course; that my ex is a man and nothing more. A scared, guilt-ridden, flawed man who fucked up royally but has enough self-awareness and strength to own up to it. And since it’s Christmas and since I’m a forgiving person, what choice do I have but to proffer some much-needed holiday redemption?

The real question, of course, is will I ever have the strength to forgive myself — my body — for getting sick in the first place? Will I ever be able to show it the same courtesy, the same affection, the same level of love and absolution?

That’s something I’m still working on. And if ever there’s a time for it, I’d say it’s now.

Dating with breast cancer

22 Nov

A few weeks back, I published a story for MSNBC/Today called The Cancer Kiss-Off:  Getting dumped after diagnosis, prompted by some interesting research, some killer anecdotes and my own personal experience.

Now while it’s true that a study conducted by a handful of researchers, including Dr. Marc Chamberlain of Seattle Cancer Care Alliance, did find that women diagnosed with cancer or MS are six times more likely to be separated than a man diagnosed with the same disease (as Chamberlain put it, “there was a disproportionate number of partner abandonments in female patients.”)

And while it’s also true that the fledging relationship I was in imploded shortly after my breast cancer diagnosis (oddly enough, after months of silence, the guy actually called to apologize for ditching me the very night before my Cancer Kiss-Off story went live – weird!), I don’t think breast cancer and broken hearts are a natural pairing, unless of course you’re married to Newt Gingrich.

Sometimes, the cancer diagnosis is just the straw that breaks Cupid’s already bowed back. Other times, a woman diagnosed with breast cancer may decide that life’s too short and staying in an unhappy and unhealthy relationship with an unsupportive partner is far worse than fighting this crappy disease alone.

Whatever the case, some of us with breast cancer eventually find ourselves Out There. And according to the women (and men) I talked to for a recent story I did for Match.com’s online magazine Happen, it’s not really that bad, especially if you have the right attitude.

And according to Gina Maisano, author of Intimacy After Breast Cancer, attitude is everything when it comes to dating — especially for women dealing with breast cancer.

“You can look at yourself as damaged goods or you can look at yourself as the strongest superhero on the planet,” Masaino says in my new story. “Surviving the words ‘You have cancer’ is enough to win a medal of honor. But to come out standing strong and moving forward with your life instead of living in a closet, that’s a powerful woman — and you should be proud of yourself.”

I’ve certainly been trying to give the whole dating with BC thing a go and have found it to be a mixed bag. Some guys completely get what you’ve been through and think of you as a cross between The Big C’s Laura Linney and Xena, the Cancer Warrior Princess. Other would just as soon steer the conversation back to their own fascinating challenges, like learning how to fly fish (yep, been there, suffered through that). Still others want to talk exclusively about reconstruction, as in when are you getting your new boobs and just how big are these boobs going to be. Sigh.

The bottom line is people are people and just because you’re an official card-carrying member of the Cancer Club, it doesn’t mean they’re going to act any better or worse than they normally would. That’s what makes life so fun and interesting and, yes, infuriating, at times. But you have to admit, it’s not boring. And that, my friends, is something.

So have you done any dating since your diagnosis? Have you, like me, actually tried to date through chemotherapy and radiation? If so, I’d love to hear about it. In the meantime, feel free to read about some inspiring success stories in my latest piece, Dating with Breast Cancer.