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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.”

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Boxing, blogging and trying to ignore the breast cancer beast

30 Oct

Photo courtesy of Jim Seida / NBCNews.com

Yes, I know it’s been a while since I posted anything. I’ve had a busy summer — hiking, baking, boxing and most of all doing this thing I like to call “pretending I never had cancer.”

But summer’s over and fall is here and with it, October, the month when it’s pretty much impossible to forget your breast cancer because everywhere you look people are dressed like gigantic pink ribbons and/or talking about their battle with the beast. And I suppose I’m no different.

I wrote a series of essays last October about my BC diagnosis, my double mastectomy and what it was like to go “out there” and date while going through breast cancer treatment, to try to find love in the time of chemotherapy.

My latest essay, published today on nbcnews.com/TODAY.com, takes up where those other essays left off, delving into some of the ripples you experience after diagnosis and treatment, as you try to navigate that weird territory known as survivorship.  Here’s a snippet:

There’s nothing like having cancer to make you appreciate the little things in life — like buying shampoo, running a few miles or being able to forget the address of the hospital where you were treated.

After I was diagnosed with breast cancer in February 2011, I felt like I lived at that hospital. Today — a year out from treatment — it’s in the rear view mirror, along with the double mastectomy and debilitating chemo and radiation I wrote about last October on TODAY.com.

Not that there aren’t still plenty of daily reminders regarding my year of living cancerously: chemo brain, adhesion pain, hot flashes (courtesy of my new BFF tamoxifen) and, oh yes, my board-flat Olive Oyl chest.

But there have been good, uh, developments, too.

The biggest one — for me — is that I now have hair. For those of you who think baseball is slow and tedious, all I can say is try watching hair grow sometime.

I disguised my bald head with a wig from mid-June until New Year’s Eve then gratefully ditched it, along with the tape, the itchiness, and the constant fear that I’d accidentally spin the thing around backwards while swing dancing like some character on Gilligan’s Island.

Come January, I let my freak flag fly and began rocking a dark gray micro pixie.

“With the wig, I was trying to pass as a healthy, normal woman,” I joked to my friends about my super short ‘do. “Now, I’m trying to pass as French.”

You can read the full essay — and check out more pics of me boxing! — here.  As always, thanks for stopping by. And please feel free to share your story — or favorite survival tip. We’re in this together, people.

Looking for a ‘shortcut’ to bigger better boobs? Breast cancer ain’t it

9 Jul

Elisabeth Dale of TheBreastLife.com asked me to do a guest post on her blog the other day, which worked out quite well because I was in the middle of a hissy fit about something I find particularly irksome: people who think breast cancer is some kind of golden opportunity to get “bigger, better boobs.”

Here’s the start to my post and a link to the website where you can read the whole shebang:

I was talking to a breast cancer buddy the other day — one of the lucky ones who found her cancer at Stage 0 and got away with a minor lumpectomy — and was amazed and horrified at something she told me.

Apparently, while she was still learning about the staging of her disease, a handful of her friends told her they thought breast cancer was a great opportunity to improve her boobs (my friend’s always been small-breasted). As in, “You should totally do a double mastectomy and then get the boobs of your dreams.”

As someone who’s not only had a double mastectomy but is also currently researching reconstruction, I’d like to offer a little insight into this idea that breast cancer is a convenient way to “upgrade” your girls.

To read more, click here.

I got the “Now you can get bigger, better boobs!” chestnut from a few people after I was diagnosed. And have heard other BC survivors talking about people who’ve thrown that at them, as well. What about you? Have people told you how “lucky” you are to be losing your old/small/droopy breasts to cancer because now you can get bright, shiny new ones? Let me know. Maybe we can start a mob. ; )

Did your mammogram catch your breast cancer?

10 May

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Flying the friendly skies

7 Apr

The first annual Cancer Treatment Centers of America blogger summit. That's me on the left, looking like I have to go to the bathroom. ; )

I’m back in Seattle after a week-long working vacation that took me first to Phoenix, Arizona, for a blogger summit sponsored by Cancer Treatment Centers of America, and then on to Dallas for a sister summit, sponsored by my big sister Mary.

As you know, I was a little nervous about whether I’d make it through the TSA security checks with my dignity — and my girls — intact, but I managed to breeze through without a hitch (except for the lost bag in Phoenix and the cancelled flight in Dallas). I was especially happy that I didn’t have to go through the new, high-powered X-ray machines, not because I don’t enjoy mouth-breathing strangers looking at my naked body in the most unflattering light known to God or man, but because I’ve had quite enough radiation for one year (or one lifetime), thank you very much.

Unfortunately, not all of my breast cancer sisters have been so lucky with the wand-wielding folks of TSA.

Nancy’s Point sent me a link to a blog post she wrote about the trials and tribs she endured during her vacation in February, which included being threatened with a pat down after explaining to a TSA agent that she might not be able to lift her arms over her head while going through the X-ray machine (anyone who’s had a mastectomy can understand this) and a slight freak-out on the part of a security agent regarding her “scary” lymphedema sleeve (all the terrorists are wearing them this season, apparently).

Also got a note from Amy who pointed out that more fun may await, should I choose to go the tissue expander route when I get my reconstruction. “Those suckers have a magnetic valve for when you get your ‘fills,'” she wrote, “and actually set off the alarm at the metal detector! THAT is a fun one to explain!”

Rocking my chemo curls (and a pretty vintage scarf) in Dallas.

I didn’t set off any alarms with my boobs, but I did experience some alarms (and alarm) in Dallas when a slew of tornadoes (15, to be exact) set down in and around the city just as I was getting ready to leave for the airport on Tuesday. Luckily, no one was killed and none of the twisters came within 10 miles of my sister’s house. But my flight (and hundreds of others) were cancelled, thanks to winds that tossed 18-wheelers around like Tonka toys and hit DFW with hail the size of peas then ping pong balls then baseballs then grapefruit then, I don’t know, the planet Pluto, all within a half hour.

Finally made it out of Dallas late Thursday night with a slew of notes, information, and interviews from the blogger summit. And a rash of mosquito bites from my sister’s back yard, which didn’t bother me all that much since it meant the chemo had finally left my system. (Last August, during my “I’m So Chemover This” party, the mosquitoes that plagued everyone else left me completely alone, thanks to my toxic avenger status).

I’ll be writing more about the blogger summit in days to come, but for now, I’ll share a quick video that one of my new cancer buddies, Catherine of MassKickers.org, shot while I was there. Why do tumors suck? she asked. Oh, let me count the ways!

Chuckles, the cancer clown

7 Jan

It’s a gray, muzzy Saturday here in Seattle and I have to say the external weather and my internal mood are perfectly matched.

I’m not sure what happened. Last night, I went out with a slew of journalistic types — smart, snarky sorts with more quips up their sleeves than tattoos (which is saying something for Seattle) — and I had a perfectly lovely time meeting new people and yammering with old buds. One of those buds was a colleague I hadn’t seen in more than a year, which meant we had a lot of catching up to do.

In other words, there was a lot of cancer talk.

As usual when I’m out with a group of people who know about my situation, I became Chuckles, the Cancer Clown, cracking wise about the double mastectomy, the chemo, the hair loss, the radiation, the daily doses of tamoxifen — the whole nine yards. Listening to me talk about my breast cancer experience, you’d think it was all a big hoot. You’d think I wasn’t a bit fazed by the loss of my beautiful breasts and the fact that my chest now looks like a 10-year-old boy’s that’s been badly ironed.

Sure, my nipples are crooked and there are wrinkles and folds where there used to be lovely feminine mounds. But so what? I’ve got fabulous new fake boobs, given to me by a friend of a friend who got them at Nordstrom for $300 each. “I call them my gummi boobs!” I tell my editor buddy. “Aren’t they great? I can just hand them to some guy if he wants to feel me up and I’m not into it. And when I get tired of ’em, I can just tuck ’em away in a drawer!”

Watching me laugh and joke about my wig — made from my own hair which I had to shave to save (one of the hardest decisions of my life) — you’d never imagine me pounding my bathroom mirror, sobbing “Come back! Come back! Oh god, please come back!” at my patchy bald pate during those horrible long months following chemo.

I hide the pain, the anguish, the grief, the whole horrible mindfuck that is cancer treatment quite well. At least when I’m out with friends.

Once I’m home, though, things are different. Chuckles slips away and I’m left with Cancer Chick, the girl who winces as she pulls off the wig (the double stick tape is attached to new growth now and takes out a chunk of hair with each wear). After the wig is gone, Cancer Chick then changes into a nightgown and diligently rubs castor oil all over her chest — or what’s left of it — hoping it will soak into the skin and the muscle beneath and make it possible for the skin to stretch enough to hold tissue expanders and eventually implants. Hopefully, not implants that will encapsulate or explode once they’re inside.

Of course, this may all be for naught. Thanks to radiation — you should hear my stand-up routine on that particular topic — the skin on the left side might not stretch. It might not heal. So I may be forced to have some kind of complicated surgery that harvests a chunk of muscle and tissue from some other part of my body in order to build a boob there.

“I may end up with a butt for a boob,” I told my friend last night and we both howled at the wackiness of that.

I’m sure part of it was the beer. Part of it was the discomfort of having to talk about cancer in a group setting. Part of it was my almost fanatical insistence on making others feel comfortable about the fact that I’ve somehow ended up with this lousy, terrifying disease. And part of it — and this particularly grim blog post, no doubt — is the tamoxifen that has me swinging back and forth like a emotional version of Poe’s Pit and the Pendulum.

Don’t get me wrong. I don’t think it’s necessarily a good thing to have a stick up your ass about your problems all the time. Black humor is what got me through my warzone of a childhood and it has served me well through this current cancer zone, as well.

But it’s also good to remember — to acknowledge to myself and to others — that sometimes my cancer is not going to be amusing. It’s actually going to make me cry in front of you. Or stay at home curled in a ball under my coffee table. And despite the fact that I’m no longer in treatment, my grand cancer adventure is not over by a long shot.

Although, thankfully, neither is Chuckles’ brave little standup routine.

In search of my new bionic boobs

2 Dec

So today’s a big day for me. In about two hours, I’ll be meeting with my plastic surgeon to see what effect the six plus weeks of radiation had on my left side. I’d say my left breast, but there’s not much breast left. There’s a nipple and skin and scars and scar tissue which has adhered to the muscle wall. Your basic beat-up 10-year-old boy look. But with a lot of luck, I’ll hear today that I’ll soon be getting a breast there, hopefully without too much trouble.

That last is a bit facetious since breast reconstruction is not an easy process, although many people still equate it with cosmetic breast enhancement, which is a much simpler, almost cut-and-dried procedure these days. Reconstruction, however, is much more complicated and can involve multiple surgeries and long recovery times. I’m praying that I’ll be able to get what I call the “easy-peasy” reconstruction method involving tissue expanders and implants.

With this method, you basically get a couple of empty tires surgically implanted behind your chest wall which the plastic surgeon pumps up once a week or so (via some kind of valve) until you have the right size. Then they swap out the full tires for your implants (either saline or silicone – still haven’t decided yet) during surgery. I’ll be doing this with my right side which didn’t go through radiation, but the big question is what will happen with old Lefty.

If radiation has screwed the pooch on my skin there (and according to my radiation oncologist, it does with maybe one third of the women who go through it), the skin won’t be able to stretch enough to hold a tissue expander. Which means they’ll be “borrowing” tissue and muscle from other parts of my body to “build a boob.” (When I first heard this, I immediately pictured them nicking tissue from my butt, my thighs, my right armpit, my left knee and sort of cobbling it all together like a boob hot dog. Such is not the case.)

Instead, they usually borrow tissue from one place, like your belly — especially for women who’ve had kids (instant tummy tuck!). Unfortunately (or not), I haven’t had kids and was told during my first consult that my stomach wasn’t big enough to use for the “build a boob” method, which is officially known as a tram flap. (This is another one of those backhanded cancer compliments, like “You’re so young, you’ll be a great candidate for chemotherapy.” The first time I heard that, I didn’t know whether to cry because of the impending chemo or preen because of the “young” word. At 53, you take what you can get.)

Anyway, since I can’t get a tram flap, they’d be looking elsewhere for that muscle and tissue. On my body, not anyone else’s (I’ve had plenty of sweet offers from friends willing to sacrifice their pot bellies for my new boob but the tissue’s got to come from me).  If I have to go with this method, it’ll mean scrapping my carefully saved (and diligently moisturized) skin and nipple on the left side and replacing it with a hunk of flesh from my latissimus dorsi in a procedure known as a “lat flap.” It’ll also mean multiple surgeries to create a nipple, then tattoo the nipple (and aerola). Plus recovery time for both my front and my back. Plus the loss of muscle on my back, etc. etc. 

None of this sounds like a good time to me. If I had my druthers, I wouldn’t have any of it. Not even the tissue expanders embedded in my chest because from what I’ve heard, they can hurt like a son of a bitch as well as feeling like a couple of rocks attached to your chest (can’t wait to see the expression on some swing dance lead’s face when I shove those puppies up next to him).

But the thing is, I want my boobs back — I miss them, I need them, and yeah, I feel like I deserve them, especially after all I’ve been through these last 10 months.

So, yes, I’ll do what I can do get them — endure the pain of the tissue expanders, suffer through multiple surgeries (if necessary) to build a boob out of bits and pieces of my body. And yes, even shamelessly put up a blog post like this, asking all of you to keep your fingers, legs, toes and whatever else crossed for me today.

As always, thanks for the read and for any and all good wishes you can send my way today. Talk to you soon.