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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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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.

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.

It’s my party and I’ll cry if I want to

15 Apr

So I had quite the party last night. There was music, there was wine and there was me, curled up on the couch with a heating pad, an old timey quilt and an ever-diminishing box of chocolate cookies. Yes, as you’ve probably guessed, I was the guest of honor at a good old-fashioned pity party last night, brought to you (or me, rather) by Living with Cancer and My Bad Attitude Productions.  

I’m still not sure what exactly happened or why it decided to happen on what must have been the most gorgeously vibrant spring day in Seattle history. I woke feeling a little under the weather, with fever, chills and a bit of a sore throat and for some reason couldn’t convince myself that going out for a run would be the thing to lift my spirits and clear my head. Instead, I pointedly ignored my running shoes (and the running laptop) and started watching Sex and the City (the movie), which didn’t exactly help my mood. (How could Big do that to Carrie? Why is Carrie reacting like such a dork? And what the hell is with that bird on her head?)

Before I knew it, morning had blended into early afternoon, which then coasted slowly towards late afternoon. And I still hadn’t left the house. I’m not even sure I ate anything, although I did take my medication: the anti-anxiety pill, the tamoxifen, the two tabs of Vitamin D and one tab of Vitamin B12, all chased down by a fish oil tab the size of my little finger. I take all of this crap every day (and more on days when I have bad chest pain or a migraine or can’t sleep), although the only pill that really counts is the tamoxifen, which acts like a hawk-eyed chaperone at a seventh grade dance, perpetually shouldering its way between those two old lovebirds — estrogen and cancer — so they can’t hook up and produce a slew of baby tumors.

And that, I believe, is what was … or is … at the heart of my funk (truth be told, I haven’t quite kicked it yet).

Not that I have any reason to be in a funk. Last Wednesday, I had a stellar one-year follow-up with my breast cancer surgeon, who told me that my left side had healed so well she couldn’t even tell that I’d had radiation there. Plus I’m working as much as I was pre-diagnosis; I just got back from a trip to Arizona and Texas; and spring has finally sprung in Seattle, chasing the constant drizzle and gray away with glorious sunshine and days that stretch on forever (or at least until 8 p.m.).

And yet yesterday (and even Wednesday while talking to my doc), all I could think about was the dreaded R-word: recurrence.

Obviously, with no more “mamm” to gram, that particular method of breast cancer screening is off the table. And in the year since my surgery, I haven’t received an ultrasound or MRI to see if any new tumors have sprouted in my chest. I also haven’t received  any assurances or guarantees that I’m completely out the woods and that I’ll never again have to climb onto the bad carnival ride that is cancer treatment. Instead, I’ve been living in Limbo Land, where ever ache and pain is ripe for a new kind of dark, desperate scrutiny.

My BC surgeon said that a physical examination — which she performed while we chatted about reconstruction, swing dancing and whether or not I could take up boxing — was the best way to determine if I was developing anything hinky in my chest. But what about all the other areas of my body? My liver, my lungs, my bones, my brain — all those places where breast cancer likes to pop up and wreak havoc like a bitter, inebriated ex-boyfriend at your first major book launch.

That’s where things get a little muzzy. According to my oncologist — who’s gone over my recurrence rates with me on more than one occasion — I need to tell her if I start “feeling bad” or suddenly develop a weird persistent pain. Or, I imagine, I end up with a broken rib after getting a hug or a have a seizure while grocery shopping.

Do fever and chills and a sore throat fit within the “feeling bad” category, I wondered yesterday, watching bright sunshine blur into gray dusk. (Or was the fever not a symptom of a cold at all, but one of those infamous hot flashes I was told I’d get as tamoxifen hip-checks me into menopause?) And while we’re on the topic of hinky things developing, what about that sore spot under what used to be my left breast. Was that a tumor starting to sprout or had I knocked myself with the vacuum cleaner handle yet again?

Oh the places you go when you’ve had cancer.

And the things you say. Friday night over drinks with a girlfriend, I casually mentioned that I knew I wasn’t going to live all that long.

“Once you have cancer, you tend to get it again,” I told her, sipping my martini and grazing on a goat cheese, mint and bacon-sprinkled bruschetta. (Might as well live it up, since I’m going to die in ten minutes, ten days, ten years or whatever, right?)

“I’m feeling really blue,” I texted another buddy last night while cancelling plans. “I don’t want to die young and I know I’m going to now.”

Who does that? Who dumps that kind of crap into the laps of their friends? Certainly not me, unless I’m in the throes of a deep emotional funk. Which may or may not be something I should report to my oncologist (Hmmm … I’m normally so upbeat. Perhaps my foul mood is symptomatic of a brain tumor?).

It’s probably just the cold (or allergies) taking me to this dark place. Or the spate of friends and former neighbors who’ve recently lost (or are in the process of losing) a parent, grandparent, spouse or beloved pet. Maybe it’s the one-year anniversary of my double mastectomy, which looms on the horizon like a tax deadline. Or hey, maybe it’s the frigging tax deadline itself.

Whatever the case, I’m blue because I hate not knowing what the hell is going on with my body and knowing that I’ll never really know as long as I live, which I hope will be a long, long time, but chances are it won’t because of this crappy disease.  I’m blue because I’m a bit of a control freak and cancer is not something you can control. Or predict. Or prevent, no matter how much sauteed kale you consume (and trust me, I’m consuming a lot these days). I’m blue because recurrence happens; it’s happened to friends and family members and to some of my cancer buddies on Twitter and while some of these people have been able to stay on top of the disease, it’s not always possible to kick cancer to the curb once it starts “traveling from organ to organ like a gypsy caravan,” in the words of the late, great Dave Hodgson.

I’m blue because it’s gorgeous out and I should be out there celebrating the sun and the spring weather and the life I have while I have it, but instead I’m moping around the apartment “giving in to myself,” as my mother used to say. I’m blue because I’m usually the one trying to cheer other people up when they confess these kinds of dark thoughts and for some reason, I’m not quite able to do that for myself.

I’m blue because I’m angry and scared and don’t feel well and because I have to pay a bunch of money in taxes and I gained like four pounds while visiting my sister in Texas. I’m blue because I don’t have a Mr. Big or a body (or budget) like Sarah Jessica Parker and because despite having cancer, I’m just as shallow and self-absorbed as I ever was.

Oddly enough, though, now that I’ve gotten all this crap off my chest, I actually feel a little better. Thanks for the ear, folks and for stopping by my little pity party, which as of this moment, is officially closing down. Time to go run in the sun. Time to stop whining and live.