BRA Day, yay!

Posted: October 18, 2012 | Author: | Filed under: breast cancer, cancer fatigue | Tags: , , , , , , | 12 Comments

Yesterday was BRA Day. No, not wear a bra or burn a bra day but Breast Reconstruction Awareness Day. Yes, more awareness. Yay.

I didn’t write about this yesterday so I’m a day late and a dollar short. A maybe a cup size short. Or maybe just short.

I was hoping that by waiting a day, I would have something nice to write about BRA Day. I was hoping that by waiting a day, I’d be able to focus on the potential for positive transformation via reconstruction, instead of thinking ugly thoughts about how wrecked most women feel after breast cancer, whether from a lumpectomy, a single mastectomy, or a bilateral mastectomy.

My feelings about BRA Day are mixed. Rather like my cup size. Initially, I braced myself for more “awareness.” It’s no secret that I’m not a fan of all the breast cancer “awareness” out there (click here or here or here or here for the latest rants), and the month of October wears me out. Big time. However, awareness about reconstruction options is a good thing. There will be no ranting about awareness for reconstruction options. That said, do we need to declare a national BRA Day to get the reconstruction information in the hands of those who need it? Why isn’t it standard protocol for a breast surgeon to educate patients on reconstruction? Why do we need an entire day, with a national spokesperson (Jewel, the singer, who has written a special song especially for reconstruction patients)? Why must breast cancer patients/warriors/survivors be accosted every damn day in the month of October by yet another reminder of cancer?

I’m very fortunate to live in a city in which I have access to crazy-good surgeons and top-shelf medical institutions. My fabulous breast surgeon made the effort to inform me of my reconstruction options, so I knew what was on the menu. She works closely with a couple of plastic surgeons, and she makes it easy for her patients to follow the trajectory from mastectomy to reconstruction. Because I have type-A tendencies, I explored the reconstruction options, asked countless questions, and sought out information, no matter how gory. Watching youtube videos of actual surgeries, albeit with one eye shut sometimes, is de rigueur for me. I know this is not the case for all women with breast cancer. I am counting my blessings here, if one can use the word “blessings” in the context of cancer. Those of you who’ve been there know what I mean (blessing: we caught it early! reality: there was something to catch; blessing: your cancer is located in a body part that’s easily removed! reality: there’s cancer that needs to be removed, and your body will never be the same; blessing: you’re young and healthy! reality: I had both breasts cut off at the age of 40 while tending to an 8-year-old and a 10-year old; blessing: you’re so strong and able to handle this challenge! reality: the rigors of cancer never let up, no matter how strong one is; blessing: your cancer is so treatable! reality: regardless of treatability, cancer is cancer and it sucks).

But I digress.

Before I go any further, let’s be clear about one thing: while I’m not satisfied with the results of my reconstruction, my surgeons have done amazing work, and I wouldn’t have chosen a different option. Ok, so I didn’t have any other options, because I had a barely-contained, rare infection and needed to shore up the sunken, excavated chest wall with some healthy, vascularized tissue, aka The Big Dig. I showed up with a hot mess of a post-mastectomy chest wall that went from bad to worse to even worse to holy hell, can it get any worse? and my docs transformed it to pretty damn good, considering from where we started.

Before the infection ruined the post-mastectomy party, I was planning on the “standard” reconstruction, which involves having tissue expanders put in during the mastectomy surgery, then filling the expanders with saline every week or so to stretch the skin, then replacing the expanders with implants once the skin is stretched. The skin must be stretched post-mastectomy, unlike in a breast augmentation, because the skin, fat and tissue have been scooped out by the mastectomy in an effort to remove all the cancer. It’s not the same as plopping a set of implants in a regular chest. I read up on the other forms of reconstruction but didn’t study them intently because the expanders-to-implant route seemed like a done deal. Once the infection entered the scene, however, I learned a lot about the other options.

Apparently I’m in the minority of women regarding reconstruction options. According to the BRA Day website, not every woman has a stellar breast surgeon who lays out all the deets, good, bad, and ugly, and 70 percent of women undergoing breast cancer surgery are not informed of their reconstruction options, and only 23 percent of women know that there’s a wide range of reconstruction options. Scarier still: only 22 percent of women are briefed on what to expect post-reconstruction. What??? I spent a lot of time looking at before-and-after photos of the women my surgeons had operated on, at my surgeons’ insistence. I consented to become one of those before-and-after photos and am happy to know that other women can see those photos so they know what to expect.

The BRA Day website gives an overview of the different types of reconstruction, and presents the information in little sips instead of overwhelming gulps. There’s even a handy chart for comparing the pros and cons of different types of reconstruction. This could be very helpful when trying to process heaps of information, most of if scary and difficult to hear. I’ll give the BRA Day website credit for laying out the information in an easy-to-take format.

 

One thing that’s missing from the website, though, is information on The Women’s Health and Cancer Rights Act (WHCRA). There’s a reference to the cost of reconstruction on the BRA Day website, but it doesn’t mention that there’s a federal law protecting women from being denied coverage by their insurance companies. The law has been on the books since October 1998, and says that group insurance plans that cover mastectomies must also cover reconstruction.

Now, here’s what I really hate about BRA Day (you knew this was coming, right?). The name. Like so much about breast cancer, and especially breast cancer “awereness,” BRA Day tries to direct the focus away from the disease and back to the breasts. It’s sexy! It’s glamorous! It’s pink and pretty! It’s all about the boobies! Sheesh. Here we go again.

googleimages.com

I’m not crazy about the fact that BRA Day is sponsored by plastic surgeons. I happen to love and admire my plastic surgeons, and I am ever so grateful for the work they do for women who’ve been royally screwed by breast cancer. But the fact that the American Society of Plastic Surgeons and The Plastic Surgery Foundation sponsor BRA Day makes me a wee bit skeptical.

And finally, I’m bugged by the fact that BRA Day, a worthy and necessary happening, can so easily be conflated with No Bra Day, which is “celebrated” either July 9th or October 13th — or maybe both — and is neither worthy nor necessary but instead bombastic in its emphasis of breasts.

Maybe I’m just worn out by Pinktober, and maybe I’m run down by the realities of the cancer “journey,” and maybe I’m disappointed that no matter how good reconstruction is, it can never replace what’s been stolen by cancer.

 

Apropos

Posted: February 28, 2011 | Author: | Filed under: breast cancer, drugs, infection | Tags: , , , , , , , , , , , , , , , , , , , , , | 6 Comments

Two pieces of news today, all contained in one handy-dandy post. First, this comic made me laugh, even though it’s not applicable to me since I need both sides. Luckily, I don’t have to save up for one or both sides. Thanks to the Women’s Health and Cancer Rights Act of 1998, it’s covered.

So for those litigious souls out there who’ve pestered me to “make sure the doctor/hospital/insurance company/orderly/mammogram technician/parking booth attendant/janitor pays to clean up the mess that infection caused,” you can rest assured that I’m getting what’s owed me, so to speak.

Yes, people have actually said that to me. That I need to make sure somebody else pays for what happened to me.

Cha-ching.

If only it were that easy. Or if only I were that shallow, or had the energy to try and create a lawsuit, then all my troubles would be over.

As if.

I don’t hold anyone responsible for the post-surgery infection any more than I hold the sun responsible for rising each day. Some things just happen. Yes, I know there’s a scientific reason for the sun rising, something to do with the pull of the tides or the rotation of the Earth or some such phenomenon. But that’s not nearly as interesting or titillating as ambulance-chasing lawyers drumming up skeevy lawsuits.

If not for the Women’s Health and Cancer Rights Act, I’d be calling Jim Adler, the “Texas Hammer” real soon. The “tough, smart lawyer.” I bet he could get me top-dollar for my medical misfortune. But I’ll leave him alone for now and let him focus on the important cases, like the nasty 18-wheeler wrecks in the middle of the night.

Thanks to the WHCRA, a federal law says my insurance company has to pay for my reconstruction. The law refers to “mastectomy-related services,” which sounds a lot more exciting than it really is. Wonder if I can campaign to make mani-pedis part of the “mastectomy-related services.”

I first heard about the WHCRA while reading Promise Me, by Nancy Brinker. She’s Susan G. Komen’s little sister, who made the promise to her dying sister in 1981 that launched the global breast cancer awareness movement.

Thankfully, “breast cancer” is now a household term instead of a shameful secret, as it was in the past, and health insurance companies can’t deny the coverage required to fix the problems that breast cancer surgeries and treatment create. I could fill this entire screen with facts & figures, befores and afters, thens and nows, of breast cancer. But instead I’m thinking about the WHCRA.

Because of the WHCRA, I don’t have to worry about whether I can afford to clean up the mess that breast cancer (and its bad-news friend, the post-surgical infection) created. I don’t have to make a t-shirt that says “Will Work for Boobs” or wash dishes at Dr S’s house in exchange for my surgery. As if being diagnosed, going through surgery and dealing with the infection weren’t enough. I’m so glad I don’t have to sing for my supper as well.

The second piece of news is pretty important. Maybe not as important as the WHCRA, but only because that affects a whole lot of women, and this bit of news affects me and me only.

Today, Monday, February 28, 2011 is my 200th day of oral antibiotics.

Yes, you read that right: I have been on oral antibiotics, twice a day every day, for the last 200 days. Bactrim and Minocycline, also known as “these damn drugs,” have been my constant companions for 200 straight days.

I’m not great at math and am too old to waste time trying to get better at things that are useless, and for me, trying to get better at math is useless. It’s just not going to happen. I know I should believe I can fly, touch the sky, be whatever I want to be or some other such drivel as churned out by Mariah Carey and the like, but I don’t believe I can get better at math, and frankly, I really don’t want to get better at it. I’d much rather spend my limited time and energy on other stuff, like playing as much tennis as humanly possible.

But if I were better at math, I would be able to say what percentage of an entire year I’ve already spent on oral antibiotics. Oh, never mind; who cares. Let’s just suffice to say that 200 days is a really, really long time, and if you think otherwise, I don’t want to talk to you. Ever. Or at least until I get off these damn drugs.

If you want to know why I’ve been suffering this cruel & unusual punishment for so long, read this. I just can’t explain it again; I’m too exhausted from trying to do that math and figure the ratio of time spend on these damn drugs verses time not spent on them. Well, here’s the Cliffs Notes version of the story: I got an infection from the tissue expander on the right side after my bilateral mastectomy on May 13, 2010. The infection was (is?) tricky and was hard to diagnose, but we finally learned, in mid-August that it was a mycobacterium fortuitum, which is a wily little bugger that is insidious and hard to kill. The most powerful weapon against this bug is two different antibiotics taken twice a day for a very long time. Like forever.

200 days is a blip in the universe of long-term drug therapy. Every time I feel sorry for myself for still having to take these damn drugs, I remember my infectious disease docs chuckling softly and shaking their heads at my pitiful temper tantrum and infantile whining about why I still need to be on these damn drugs. They tsk-tsk me and handle me with the kid gloves I require of them, then sweetly remind me that many of their patients are on antibiotics for 2 years. 2 years. I’m no math genius, but I’m pretty sure that’s longer than 200 days.

Ok, so a little perspective is good, but still, I feel the need to mark the 200th day of twice-daily drug therapy. Judge me if you must, but consider this: there’s more to taking these damn drugs all this time than meets the eye. Think of the numerous trips to Walgreens to pick up said drugs, along with the other prescriptions I have to take, and the fact that none of them start on the same day, so one of them always needs to be refilled. Thank heavens my sweet oncologist added me to his personal pharmacist’s home delivery service, and now the FedEx man brings these damn drugs right to my front door, all at once. I’m sure they miss me at Walgreens.

There’s the sheer volume of pills I’ve swallowed. Twice a day every day for 200 days is a lot of pills. Again, I’m no math genius, but wow that’s a lot of pills.

There’s also the stress of remembering to take these damn drugs twice a day every day. It’s such a habit for me now that it will seem strange to not be doing it, when that day comes. Strange, but wonderful, too. I can’t wait. Actually, I can’t even think about it because I don’t want to consider how many days I will have been on these damn drugs by that time. But you know I’m going to be counting, right?

And then there’s the issue of what foods don’t mix with these damn drugs. Can’t eat dairy products for an hour before or two hours after I take these damn drugs, because dairy can inhibit the drugs’ absorption. If I’m going to go to the trouble to take these damn drugs, I certainly want them to get into my system and fight that mycobacterium.

And last but not least, there is the scorched earth tendency of the antibiotics to kill the good bacterium in my tummy, along with the bad bacteria elsewhere. I’ve gotten used to the near-constant morning sickness that comes with 200 days of these damn drugs, but I still dislike it. A lot. When the extreme nausea comes to call, no matter what I eat or don’t eat, whether an hour before or two hours after, I feel rotten. And don’t tell me your hard-luck story of how you had morning sickness every single day of your pregnancy, because at the end of that pregnancy, you got the best prize ever: a baby. Well, depends on the baby, I guess; some of them aren’t such prizes in the early days. Maybe the best prize ever is a puppy. To some people.

So by golly, I’m gonna celebrate having made it through 200 days of these damn drugs.

We highlight a president’s first 100 days in office, with either a favorable or scathing review of the job he’s done thus far. If our country can create a tradition based on a mere 3 months, I am well within my rights to celebrate having survived 200 days of these damn drugs. And since we all know it’s 200 days and counting, with nary an end in sight, I certainly will celebrate this milestone. Right now. Today.

I don’t know if it’s a nationwide tradition, but at my kids’ elementary school, they celebrate the 50th and the 100th days of school. Kindergarten especially makes a big deal out of these milestones, as well they should. Macy invited me to come to one of these celebrations and even talked me into wearing matching poodle skirts for the ’50s theme. And celebrate we did! A lot of those little kindergartners probably don’t know from one day to the next whether they’ll make it in the dog-eat-dog world of all-day school. No naps, no crying allowed, curriculum requirements that increase every year; it’s a jungle in there. That’s why they make a point to celebrate the milestones along the way, like the 50th and the 100th day. Why isn’t there a celebration for the 200th day of school, like there is for my 200th day of these damn drugs? Because the kids only go to school 180 days total each school year. So I’ve been on these damn drugs longer than the number of school days in an entire calendar year. Egads.

Ya know how we just watched the Super Bowl a few weeks ago? On February 6, to be exact. Well, on July 20th of last year, the media outlets that handle the infamous Super Bowl advertising spots were counting down 200 days until the big game. So in July, they’re thinking about selling ads during the Super Bowl, which won’t be played until February. End of July to first of February. 200 days. Curiously enough, on July 20th of last year, when the media hawkers began the countdown, I was in the hospital, for the second time post-mastectomy, with the infection.

Another significant stretch of 200 consecutive days of anything is the so-called 200 Days of Dread: a period from the spring of 1942 to November 3, 1942 in which Germany’s Afrika Korps under General Rommel marched toward the Suez Canal and Palestine, causing Jewish people there considerable and understandable stress. Not to minimize the significance of this event in World History, but yes, I’ve been on these damn drugs as long as the Afrika Korps threatened the Palestinian Jews.

And guess what? I haven’t missed a single dose of these damn drugs in all of the 200 days. Not one dose. Surely there’s a trophy for that.