Archive | Reconstruction RSS feed for this section

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.

Welcome to Limbo Land

17 Nov

“I have a port,” I tell the woman at the front desk of the Cancertown lab, feeling a bit like a character in a spy novel.

“And I have a fine Madeira,” I imagine her replying while surreptitiously handing me some microfilm.

Instead, she tells me to take a seat where I wait dutifully until an oncology nurse fetches me. It’s my first post-treatment check-up and as with all my doctor’s appointments, bloodletting is the first order of business, something easily and efficiently accomplished via the port buried in my skin under my right clavicle.

After leading me back to a small curtained booth, the oncology nurse first flushes the port (instantly filling my mouth and nose with the smell of Liquid Hospital) then begins taking blood, chatting all the while about her twin sister, a radiation oncologist in another city (“She’s Beam-O and I’m Chemo,” she tells me. “Beam-O and Chemo, get it?”).

After she has what she needs, I go back to the main lobby and loiter until yet another oncology nurse comes out and escorts me into the inner sanctum, where I’m weighed, cuffed (blood pressure not hand) and asked questions about everything from my sex life to my bowel movements.

“I’m a little nervous,” I tell her, after the Q & A is over. “This is my first post-treatment appointment and I don’t really know what to expect.”

I’m lying, of course. What I expect is that my oncologist will take one look at me and hand me a Get Out of Cancer Free card. Or maybe a diploma or certificate or testimonial like the Wizard of Oz gave the Tin Woodsman. I’d be equally happy with a report card stating that I’ve just graduated from Cancer U with all A’s (pending my extra credit Reconstruction homework). I want something, though. Something that confirms that the boob loss, the bone pain, the radiation burns and the hair loss — god, the hair loss! — have all been worth it. That I’ve kicked cancer’s ass. That I’m done.

 The look on the nurse’s face indicates that some of these expectations have been spoken aloud. Which is when I start to get the feeling I’m not going to be told “Good job, well done.” In fact, the look on her face makes me wonder if there is such a thing as done.

 “The doctor will be in in a minute,” she says, getting up. “She’ll explain everything.”

A couple of minutes later, my oncologist opens the door and we chitchat until I can’t take it any longer.

“So am I cancer-free or what?” I ask. “Am I cured?”

“We don’t really use the C-word around here,” she says, speaking slowly, like you would to a person with a recent head injury. “You remember when we talked about recurrence? When we went over the statistics?”

I remember. The chemo cocktail I chose — taxotere and cytoxan — offered a recurrence rate of 12%. The other cocktail, the one that contained adriamycin (aka the Red Devil) had a smaller recurrence rate (10%), but upped your risk of heart disease. And as they say in Skagit Valley (where I grew up), my family has bad tickers up the ying yang.

“Some of the breast cancer survivors I talk to on Twitter have mentioned something called NED,” I push. ‘”That whole no evidence of disease thing. Can I at least get an NED?”

She sighs.

“You’re low-risk,” she says at last. “I have other patients I’m a lot more concerned about. But really, what you need to do right now is just focus on healing. You have a lot of emotional healing to do.”

She then starts to tell me the lay of the land. I don’t know it at the time, but the country she describes has a name. Limbo Land.

I listen as she talk about how I’ll be coming in every three months for what sounds like the rest of my life. Just like today, they’ll take my blood to look for tumor markers and such. My job will be to tell her if I develop a weird persistent pain. Or become short of breath. Or start coughing a lot.

Metastatic breast cancer, I know, occurs most often in the brain, the bones, the liver and the lungs. (I’d memorized this my first day of cancer class.)

“Your test results will be back tomorrow,” she says, after spending a few minutes checking out my glowing red chest. “I’ll call you when they come in.”

“Okay,” I say, wiping my eyes. Somewhere during the exam, I’d started crying. I always do when reconstruction comes up. Apparently, I’m still mourning the loss of my girls. And praying that I’ll be able to salvage what’s left of them (i.e., my left nipple and skin) although I’m in Limbo Land there, too. I have no idea if my irradiated skin will hold a tissue expander and implant or if I’ll have to have a series of surgeries to build a new left boob. This will be determined by another doctor, another time.

Right now, though, it’s time to leave. Sans diploma.

I blow my nose and get dressed and make my next follow-up appointment with the receptionist out front. Then I lurch out of the office, trying to remember the important things that were said, only half of which I managed to write down, as usual.  Once I get back to my neighborhood, I duck into my favorite watering hole and practice coping mechanisms for a couple of hours. Then I go home and try my best to keep my head from exploding.

The next morning, my doctor calls and tells me my white cell count looks great. Ditto for the tumor markers.

“They were 12,” she says. “Anything under 40 is normal.”

I thank her giddily (good news, at last!) and try to hang up but she has more to share. Apparently, she’s reviewed my file and noticed that my CT scan from last March showed something funky on one of my lungs.

“You have a 4 millimeter lung nodule,” she says. “It’s probably just scar tissue but I’m going to have you come back for a CT scan in March.”

Okay, I say and put down the phone.

I was hoping for a testimonial. A report card full of A’s. A certificate I could hang on my wall, telling me that this cancer crap was history. That it was all over. That I’d won and was done. Instead, I got a lung nodule and a cold hard glimpse at my future, a future filled with quarterly blood draws and anxiously awaited test results. A future pungent with the aroma of Liquid Hospital and hot fear. A long, endless mindfuck of a future as comfortless and abrasive as the discount tissue dutifully stocked in each and every exam room.

I’d fought my way through surgery and chemo and radiation to get to the other side. But there was no other side, I realized now. There was only Limbo Land, where there were no answers, no gold stars, no C-word (at least not the one my oncologist was referring to) —  not for a very long time.

I stare at the phone thinking about how much I already hate this place, especially the sneaky way it came up behind me, squelching my breathless triumphs with a fat spiteful thumb.

And then I smile. Because it doesn’t matter whether I like this place or not, just like it didn’t matter whether I liked surgery or chemo or radiation or any of the other crap I’ve endured and overcome these last ten months.

Because I’m going to kick Limbo Land’s sorry ass.  I am.  And then I’m coming back for my goddamned diploma.

Just doing a little housekeeping

12 Nov

As Dorothy Parker put it (on her headstone), please pardon my dust.  Just spent the last hour or so bringing all of my breast cancer-related posts over from Single Shot Seattle to DoubleWhammied.com. Apologies to any and all subscribers who may be wondering if I’ve had too much coffee this morning or what. (Hey, I’m a fast writer at times, but nobody’s that fast!).

Anyway, I’d love to bring the comments over, as well, but I’m not sure if I have the WordPress savvy to accomplish that. At least not this morning (at the moment, I’ve got about an hour to shower, wrap my nephew’s birthday gifts and then hoof it to tap dance class).

Thanks so much to those of you who subscribed to my new blog during its first few hours (my baby’s already got followers!). Looking forward to chatting with you about all things breast cancer in days, weeks, months to come.

Speaking of which, now that I’m all done with radiation (can I get a hallelujah?), the doctor appointments are starting up again. I’ll be meeting with my oncologist on Monday, who will most likely be checking my blood to see whether I have any white cells left at all. And perhaps weigh in on the condition of my skin. After that, I’ll start meeting with my plastic surgeon to discuss my reconstruction options (am praying I have some).

For those interested, my lobster red chest is much better since it’s had a couple of weeks off from the EZ-bake oven (i.e., my daily radiation treatments inside a tomography machine). In fact, I actually went out in a scoop-neck shirt for the first time in ages last night (I’ve had to wear my V-neck shirts backwards for the past month or so because of the radiation burns). The left breast, which continued to get a “boost” of radiation the last week, still looks like somebody ironed it on high. But I’m hoping the skin will return to normal soon, especially the nipple which for some reason has started to lighten (am hoping I don’t have to use a Magic Marker from now on to even ’em up).

Anyway, that’s probably enough boob talk for one morning (hell, it’s probably enough boob talk for a month).  Take care everybody and thanks, as always, for reading!