A dear friend of mine asked me to compile a list of things to know when facing a cancer diagnosis. A friend of hers is newly diagnosed with breast cancer, and so my friend turned to me for advice for her friend. While I am by no means an expert, I have walked a mile or two in the pink shoes, so here’s my list. Readers, please chime in with your advice.
1. Don’t panic. I know, easier said than done. Hearing the words “You have cancer” is scary, no doubt about it. No matter where you are in life, it’s the one thing no one wants to experience, and yet more and more people are finding their lives turned upside-down by cancer. The American Cancer Society estimates that more than 200,000 women in the United States will face a breast cancer diagnosis each year. Looking at your diagnosis, treatment, and surgery options may seem overwhelming, so break it down into manageable pieces.
2. Keep a notebook. Being a cancer patient is a full-time job, and like many other jobs, it involves a lot of paperwork. Get a 3-ring binder and some divider tabs and set up an organized system to track your pathology reports, insurance statements, notes from doctors’ appointments, and research. Ask for copies of everything from your doctors. Like it or not, you need to become your own advocate.
3. Figure out how much information you’re comfortable with and go no farther. I’m an info junkie and have a deep-seated need to know as much as I can about my cancer. I ask lots of questions at my doctor’s appointments and want to look at the ins and outs of all the issues. I watched videos on youtube of the different surgeries I would have (bilateral mastectomy with tissue expanders then DIEP reconstruction and several revisions to the reconstruction.) While a deluge of info works for me, others may prefer to work on a “need to know” basis and to take sips instead of gulps when it comes to the facts & figures of cancer. Decide what level you want and don’t venture beyond that unless you’re comfortable doing so. Also figure out how much of your story you want to share. I didn’t set out to write a blog, but found it to be the best way to update my peeps on my status. Once the cancer morphed from the star to more of a supporting role in my life, I realized that blogging about it is incredibly therapeutic for me. That’s a personal choice, however, so don’t feel that you need to broadcast your status.
4. Educate yourself so you can be the decision maker, then follow your gut. This is your show, for better or worse, and you must be the one to run it. While it’s perfectly acceptable to solicit opinions and to ask your docs what they would do if in your shoes, ultimately the decisions that must be made are yours. And there will be a lot of decisions to make. I remember wishing there was a manual for this part of the cancer “journey” that would tell me what to do. Alas, no such manual exists, so it was my job to weigh the facts when deciding on surgery and treatment. The decisions (lumpectomy vs mastectomy, chemo or no chemo, Tamoxifen for 5 years to reduce recurrence odds or roll the dice?) are big, and the stakes are high. Do your homework then trust your instincts.
5. You gotta love your doctors. Or at the very least, you gotta respect them. Even if your personalities aren’t aligned, you want to feel confident that he/she is the best at what they do. If you don’t love him/her or feel unsure about his/her abilities, keep looking. Ask for recommendations from people and doctors you trust, but then decide for yourself if it’s a good fit. One of the oncologists I visited came very highly recommended; everyone and their brother had been to this guy and respected him to the moon and back. I wasn’t crazy about him, though, and didn’t relish the idea of a long-term relationship with him. And his office was depressing — morose decor and outdated, muted colors that dragged me down every time I was there. This made me realize that I needed to look at the whole picture — does the office make me more nauseated than the proposed chemo? are the front office staff members courteous? does the waiting area suggest chaos or tranquility? what is the average time spent waiting to see the doctor? how responsive is the nursing staff to your phone calls, questions, or concerns? what system is in place in the event that my doc is unavailable? Remember that they work for you, not the other way around, and if you’re not getting the care you feel you deserve, you have every right to speak up.
6. Avail yourself of another set of ears. As much as I hated being dependent on others (see number 8 below), it was crucial to take someone with me to my doctors’ appointments. In the beginning, especially, there’s a ton of information being bandied about, and most of it is very emotionally-charged, technical, or hard to process (or maybe all 3); having someone else there to listen and take notes was a must for me. Even now, 2 1/2 years later, I still take my trusted sherpa with me to my checkups and often have to text her after the visit to confirm what the doc said about a particular issue. My brain gets very full very fast with all the cancer business, so I need my sherpa to lend me some of her brainpower, and my memory took a beating from the stress & strain of all the cancer fallout. Having someone else along to recall all the little details makes a big difference.
7. Talk openly with your kids, if you have them. They’re more observant–and resilient–than you think, and conversations about cancer will dominate your life at first, so trying to hide it from them is a bad idea. Explain it to them according to their age and ability to understand. My kids were 8 and 10 when I was diagnosed, and I told them that my doctor found a cancer in my breast that needed to be removed with surgery, but that once the surgery was over, the cancer would be gone and I would be around for a long, long time to harass and embarrass them. I said that I would need to lay down and rest a lot, but that it was temporary and once I healed, I would be ok. My 8-year-old accepted that as fact, while my 10-year-old asked repeatedly if I was sure I wasn’t going to die. He needed more reassurance, so I took him to my breast surgeon, who explained the same thing I’d explained, but hearing it from her, in a more clinical setting, reassured him.
8. Let people help. Man oh man this one was so hard for me. I don’t like depending on others, and I don’t like accepting help. However, I learned real fast that I needed to let go and get comfortable with delegating and giving orders. It was hard, hard, hard for me. But I realized that many people wanted to help, and that because they felt powerless in many ways, allowing them to bring a meal or pick up my kids allowed them to participate and made them feel good for helping. For those who are the ones wanting to help, a little piece of advice: don’t ask what you can do to help, and don’t say, “Let me know if you need anything.” I was so bamboozled by all things cancer that I didn’t know what I needed some days. Volunteer something specific, i.e., I’ll come walk your dog, or I’ll drive you to your doctor’s appointment, or I’m coming over to vacuum your house and fold your laundry.
9. Nix the pity party. Another great piece of advice from my amazing breast surgeon. She allowed that there would be days in which I didn’t want to get out of bed, but she put a time-limit on it. She gave me 3 days of wallowing, and said if I felt like I needed more, to come see her and we’d talk. It’s tempting to wonder, and even ask, Why me? But the answer inevitably will be Who knows? so ya might as well get up and get on with it.
10. Limit your exposure to anyone in your life who is negative or not supportive. Trust me, people will come out of the woodwork when they hear through the grapevine that you “won” the cancer lottery. You will likely hear all manner of advice and anecdotes, most of which are neither helpful nor amusing. Also trust me that you do not need to hear about how your next-door neighbor’s brother’s boss’s wife had the same kind of cancer you’ve been diagnosed with, and she was sick as a dog and bald as an old man all through chemo and then died a year later. I repeat: you do not need to hear this kind of talk. Distance yourself from anyone who brings that kind of junk into your yard. I had to tell a few people flat-out that their diarrhea of the mouth was not helping me and that if they couldn’t think of something constructive to say or something banal upon which to comment, they could just keep on walking. You will learn who your real friends are, you will likely make some new friends, and you may even find yourself outgrowing some friendships along the way. All of this is ok. Don’t be surprised if you have friends who can’t be bothered to listen to you vent or who are afraid that your bad luck will bleed over onto them. Don’t be surprised if you have a friend who backs out of a commitment to help you in your cancer “journey.” The sad truth is some people are fair-weather friends, and cancer can be a blustery wind that uproots the seeds of friendship. The good news is that cancer can also bring people into your life just when you need them most. Two of my dearest friends are those I was merely acquainted with pre-cancer, but whose kind hearts and fine character led them to me in my time of need, and by my side they have remained.
In my ongoing rant against Pinktober, I’ve asked the question many times without getting an answer: what does all the breast cancer “awareness” make us more aware of, exactly?
I ask in all seriousness. I know what I think when I see a package of paper towels all decked out in a pink-ribboned wrapper, but I’m curious about the average, non-cancer-infested person. How does breast cancer “awareness” affect those who’ve not personally been waylaid by breast cancer? If I were just some normal person, going about my daily life and I saw an ad in the window of the TGF Hair Salon advertising their “Clip for the Cure” promotion, what would my reaction be? If I were not unwillingly strapped into the pink dress, would the “squeeze a boob, save a life” bumper stickers make me want to choke someone?
When people see breast cancer “awareness” products and services, do they think, “Oh my gosh, women (and men) are suffering from and dying from this terrible disease?” Do they think, “Damn, I’m sure glad I don’t have that!” or perhaps “Why does that damned breast cancer get all the attention?” or maybe even “mmmmm, breasts” in a caveman-like tone?
Apparently there was a time, not so very long ago, in which I was some normal person, going about my daily life. I don’t recall specifically reacting to any breast cancer “awareness” messages or intentionally buying pinked-up crap because I thought it would save some unfortunate woman’s life. I doubt I gave it much thought at all. Even very recently, as I went about my daily life and scheduled my annual well-woman exam, I didn’t think much about breast cancer “awareness.” When my OB-GYN wrote out the orders for my annual mammogram and I made the appointment and I showed up on that day and I changed into a gown and I stowed my belongings in a locker with a key and I waited in that ugly gown in a freezing cold room set up to look like a spa except for the TV blaring some dumb morning show that was most definitely not relaxing, I didn’t think much about breast cancer “awareness.” (BTW, if I ever do go to a spa that has a TV blaring some dumb morning show, I will turn on my heel and walk out.)
When the mammogram tech chatted with me about how I’m young for an annual mammogram and I explained that I’ve been getting one since I was 36 because my mom died of a reproductive cancer, I didn’t think much about breast cancer “awareness.” I expected the report to come back telling me I had dense breast tissue but no changes had been detected from the last year so I was free to go live my life unscathed for another year, until my next mammogram. When it didn’t exactly turn out like that, I still didn’t think much about breast cancer “awareness.” After my last mammogram, as I waited in the freezing cold room once again with the TV still blaring some dumb morning show while the mammogram tech showed my images to the radiologist on duty, I thought not of breast cancer “awareness” but of how much longer that appointment would take because I had a long list of things to do. When instead of being told I was free to change out of the ugly gown and back into my regular clothes, I was called back into the screening room so the radiologist could get a few more images, I still didn’t think much about breast cancer “awareness.” When the radiologist suggested we do an ultrasound in addition to the mammogram, and when her gel-covered want hovered over a certain part of my right breast while she made an upsetting and not-very-well-disguised frowny face, I still didn’t think much about breast cancer “awareness.” When the frowny-faced radiologist declined to answer any of my questions about what she thought she was seeing on the ultrasound screen and when the mammo tech gently patted my shoulder, I didn’t think much about breast cancer “awareness,” beyond being “aware” that this situation had all the makings of a disaster–a really big, really bad disaster.
When my OB-GYN got the radiologist’s report and called me to say I needed to make an appointment with a breast specialist, I didn’t think much about breast cancer “awareness.” When I called to make the appointment with the specialist and noticed that the name of her practice was Southwest Surgical Associates, I didn’t think much breast cancer “awareness” because I was busy wondering why on earth my OB-GYN had given me the number of a surgeon. When the receptionist at Southwest Surgical Associates said I needed to go ahead and schedule a biopsy, I didn’t think much about breast cancer “awareness” because my whirring brain had not quite caught up with my common sense, which would have told me to panic.
While the breast specialist injected me with lidocaine before she inserted a hollow-cored and very sharp needle into my right breast, then twisted that needle to extract a tissue sample deep within my body, I didn’t think much about breast cancer “awareness” because I was busy going to my happy place to avoid the searing pain that spread across my chest, despite the lidocaine. When the breast specialist, who at that point was just the breast specialist and not my breast specialist, double checked the coordinates on the ultrasound machine that guided her as she scooped out the tissue sample, I didn’t think much about breast cancer “awareness” because I was craning my neck trying to see what she was seeing on that screen. When she was all done and bent down to her little freezer to give me a few ice packs to stick into my bra, I didn’t think much about breast cancer “awareness” because I was wondering if the ice packs were too noticeable to stop me from running into the grocery store on my way home.
When the breast surgeon’s nurse Sharon called me a few days later to make sure I wasn’t driving before she said that the doctor needed me to “put her on my social calendar” I didn’t think much about breast cancer “awareness” because I was consumed with a feeling of dread more palpable than anything I’d ever experienced. When I (unfairly) pressed Sharon to tell me over the phone how bad it was and she back pedaled, I didn’t think much about breast cancer “awareness” because I was picking apart her every word and intonation for clues to how bad this really was.
When I drove to the breast surgeon’s office the next afternoon, I didn’t think much about breast cancer “awareness” because I was instead thinking about how I was going to get ahold of Trevor, who was out of town, to deliver the verdict before he boarded his plane. While I waited in the breast surgeon’s waiting room, I didn’t think much about breast cancer “awareness” because I was wondering whether I’d get out of there in time to go home and grab my kids then get across town–in rush hour–for my cousin’s 60th birthday celebration. When the breast specialist said that the biopsy did not look good, I wasn’t thinking about breast cancer “awareness” because I was wondering if I’d live to see my kids grow up. As the breast surgeon–who went from a breast surgeon to my breast surgeon–told me very matter-of-factly that it was indeed cancer, I didn’t think much about breast cancer “awareness” because I was focused on the pounding of my heart and the feeling of life as I knew it being replaced by a very undesirable alternative. As my breast surgeon laid out the options for ridding my body of its unwelcome visitor, I didn’t think much about breast cancer “awareness” because I was already dressing for battle. When she told me she didn’t want me to make a decision about surgery for at least 5 days, I didn’t think much about breast cancer “awareness” because my brain was full of slash-and-burn thoughts toward this cancer. When Trevor said he was ditching his business trip and catching the next plane out, I didn’t think much about breast cancer “awareness” because I was busy convincing him to stay, because if he changed his plans and aborted his trip, I could no longer operate under the (temporary) assumption that everything was ok.
While I worked the phones and manipulated my calendar to get through the myriad scans and tests required to see if this cancer had spread to other parts of my body, I didn’t think much about breast cancer “awareness” because I was still trying to make sense of the fact that at the age of 40, I was a cancer patient. As I researched oncologists and made appointments for them to review my case, I didn’t think much about breast cancer “awareness” because I was trying to wrap my head around the fact that I had a breast surgeon and an oncologist. Sitting in the oncologists’ waiting rooms, I didn’t think much about breast cancer “awareness” because I was focused on the fact that every single person in those rooms was a good 20 years older than me, and I was pleading with the powers that be to please, please, please let me live another 20 years.
As I scheduled my bilateral mastectomy, I didn’t think much about breast cancer “awareness” because I was busy counting exactly how many days there were between the surgery and the last day of school, knowing I would need as much child-free time as possible to heal. When I explained to my kids what was going on, I didn’t think much about breast cancer “awareness” because I was desperately searching for the right words to convince them that they weren’t going to watch me die from cancer they way they’d watched my mom die from it.
Healing from the surgery that left me battered, bruised, sore, scarred, and very, very flat (and not just in my chest), I didn’t think much about breast cancer “awareness” because I was busy emptying the 4 JP drains that sprung from my body and tugged and hurt like hell. As I searched in vain in my closet for something, anything, that might make me feel good about myself when I put it on, I didn’t think much about breast cancer “awareness” because I was preoccupied with wondering if I would ever get used to my new profile.
And when the post-mastectomy infection took over my body and once again turned my life upside down, I didn’t think much about breast cancer “awareness” because I was trying rather hard to stay alive. Upon being hospitalized for 9 days straight just 3 weeks after my mastectomy, I didn’t think much about breast cancer “awareness” because I was busy getting sicker and sicker while the doctors tried to keep me from going septic. When I was hospitalized a month later and then again 3 days after that hospital stay, I didn’t think much about breast cancer “awareness” because I was consumed with worry about whether the infection could be contained. As I endured 267 days of powerful antibiotics, I didn’t think much about breast cancer “awareness” because I was nauseated and utterly beaten down. When I decided to undergo DIEP reconstruction to get a blood supply to the oft-excavated and much-ruined chest wall, I didn’t think much about breast cancer “awareness” because I was planning how to endure a 5-to-7 night hospital stay, including a night in the ICU. When I left the hospital with 6 JP drains and a fragile peace between the transplanted blood vessels and their new host site, I didn’t think much about breast cancer “awareness” because I was on high alert for flap failure. As I recovered from that surgery, I didn’t think much about breast cancer “awareness” because I was, well, recovering from a pretty intense surgery. As I endured two more revision surgeries, I didn’t think much about breast cancer “awareness” because I was railing against the much-promoted fallacy that “at least you get new boobs.”
As I began life as a breast cancer survivor, I didn’t think much about breast cancer “awareness” because I was busy trying to live my life as a breast cancer survivor. With the passage of time and the re-introduction of non-cancer-related things to my life, I didn’t think much about breast cancer “awareness” because I was trying mighty hard to get back on track. As each cancerversary approached–date of diagnosis, date of mastectomy, date of infection, date of reconstruction–I didn’t think much about breast cancer “awareness” because I was thanking my lucky stars that all that was behind me. Then as I realized that “all that” may well be “behind” me but it’s always, always, always going to be a part of me, I didn’t think much about breast cancer “awareness” because I was busy feuding with the unruly monkey on my back. As thoughts of recurrence snake through my subconscious on a regular basis (say, every.single.day), I don’t think much about breast cancer “awareness” because I’m way too busy talking myself down off the ledge. When the inevitable thoughts of “why me?” enter my head, I don’t think much about breast cancer “awareness” because I’m committed to not RSVPing to that pity party. While I’m working my way back to my former state of fitness and wholeness at the gym and am surrounded by perfectly round, non-cancerfied breast implants, I don’t think much about breast cancer “awareness” because it takes all my energy to not feel really bad about my post-cancer body. As I gear up for the thrice-yearly oncology appointments and the biannual checkups with my breast surgeon, I don’t think much about breast cancer “awareness” because I’m busy, very busy, following my dear friend Amy’s advice of “don’t borrow trouble” (yet those pesky thoughts of “what if” are very determined to infiltrate my postive-thinking brain).
While I spend a whole lot of my time not thinking much about breast cancer “awareness,” the current culture of Pinktober makes it damn near impossible to not think about it, multiple times a day. Open the newspaper and see the Wacoal ad. Flip on the TV and see pink splattered all over NFL stadiums. Drive down the road and see inane bumper stickers and their infuriating references to the ta tas and the boobies and the girls. Go to the grocery store for necessities and run smack-dab into a sky-high pyramid of pink-labeled Campbells soup cans, which more than likely are chock full of BPA, which has been shown to cause cancer. While in the store, run across a woman wearing a ridiculous t-shirt and accost her for doing so. Tune in for the presidential candidates’ debate hoping to hear a reference to a plan to confront the breast cancer epidemic but come away with nothing but a watered-down homage by the First Lady and the first lady wannabe.
After all this, my question still stands: what does all the breast cancer “awareness” make us more aware of, exactly?
Yes, our little piggie has been hard at work.
My kids’ elementary school has a fundraiser every year, like most schools. Instead of selling wrapping paper or cookie dough, our school puts on a Walk-a-Thon. It’s a big event that raises anywhere from $40K to $50K-plus. Yes, you read that right: many thousands of dollars. Money comes in via pledges gathered by the kids for walking laps inside the school (it’s much more festive than it sounds); a live auction with prizes such as Principal for the Day, in which a kid gets to be the boss of the school for one day, and a silly string war with the counselor; a silent auction with items ranging from a homemade meal delivered to your doorstep to a pair of handmade earrings; food; carnival games; and novelty sales.
Last year our amazing Walk-a-Thon chairlady Amy came up with a brilliant idea for another element for fundraising: Kiss the Pig. At that point, we didn’t yet own our little piggie, so Amy rented a piglet from a petting zoo. That may have turned out be the longest 24 hours of her life: that poor piglet had not yet been weaned from its mama and bawled like the baby it was.
This year, Amy enlisted the help of our sweet Piper, and she rocked the house. One day last week Piper headed up to school to hang out on the stage during each lunch period and get the kids all lathered up about the Walk-a-Thon. The idea was simple: each teacher and office staff member would have a collection jar (with a custom-designed label, of course) and for the week before the fundraiser, kids would drop pocket change into the jar of the teacher they wanted to see kiss Piper at the Walk-a-Thon.
Piper was a good little piggie during the lunch periods (we were there from 10:45 until 1:00). She milled around onstage, stood on a table for better viewing, ate her snacks, and visited with teachers. Some teachers loved, loved, loved her, and others kept a safe distance. Kids being kids, they picked up on which teachers were leery of Piper and promptly filled those jars.
The day of the Walk-a-Thon found me at school to count the money in the jars. I expected to be there for a couple of hours, knowing the task would be made easier by the digital coin counter our thoughtful PTA treasurer provided. Silly, silly me. There was SO much money to count, I was there from 10 a.m. until 3 p.m., without a break! One teacher alone brought in more than $60–all in change.
The big winners were announced live, at the fundraiser, and the crowd was whipped into a frenzy. The kids were chanting, “Kiss the pig!” and screaming, parents were straining to catch a glimpse of the pig on the stage, and cameras were flashing. We have a big school — nearly 800 students and close to 70 teachers & staff — so the crowd was Texas-sized. Piper took her rock-star experience in stride, calmly munching on cucumber slices and wasabi peas as the crowd adored her. In keeping with the luau theme of the fundraiser, she sported a hibiscus leash and a lei around her neck.
When it came time for the kissing, the teachers came on stage one at a time and got up close and personal with Piper. Sadly, it went by so fast I didn’t get a picture of each teacher. By the time I got my camera ready, we’d blasted through the kindergarten, first and second grade teachers puckering up with Piper. Here’s the third grade winner giving Piper a big smooch.
The fifth grade teacher was the most freaked out, by far — which is why the kids filled her jar with every coin they could shake from their piggie banks and gather from the couch cushions.
Come on down, Mrs D! You’re the next contestant on Kiss the Pig!
She’s working up the nerve to move in for the kiss…
and Piper’s work was done.
Nice work, Piper.
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.
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.
The Hubs sent me a link to this story about the big news in the breast cancer world — the cancer-sensing bra. The First Warning Systems bra allegedly can detect a tumor in a breast years before said tumor would be found by more conventional screening methods. The “smart bra” is said to accurately screen abnormalities in breast tissue.
I saw my favorite breast surgeon today for my 6-month checkup, and had every intention of asking her what she thinks about this, but we got distracted talking about her puppy and our little piggie, and the possibility of implants for me, and the cruel injustice of the hormonal insanity that plagues a breast cancer warrior, and her upcoming Pretty in Pink event.
The First Warning Systems bra has been in development for the last 20 years, and while it sounds like a great idea, I sure wish they’d come up with a better name. As is, it sounds like a surface-to-air missile or something similarly militaristic and scary.
Of course, breast cancer is militaristic and scary, so touche.
The sports-bra-looking contraption contains sensors that supposedly can detect small changes in the temperature in breast tissue. Cancer-causing cells emit more heat than normal, non-combative cells, and this bra is said to identify the changes in body temperature that may indicate that tumors are growing. The maker of this “smart bra” says that in clinical trials, the bra correctly identified 92 percent of tumors, compared to the 70 percent of tumors found in baseline mammograms, and the bra can identify those tumors as much as 6 years before they’d show up on a mammogram. If all goes according to plan, the bras will be available for sale in Europe next year and the Unites States in 2014 with a retail price of approximately $1,000.00.
The company says that the bra provides women with a better form of breast self-exam when it’s worn for the duration of the testing period (although I’ve not found any references to how long or how often it needs to be worn or if the cost would be covered by insurance). Once the sensors do their sensing, the data is collected and submitted online, presumably by the woman wearing the bra, and then analyzed by “sophisticated algorithms.” I certainly wouldn’t want a naive algorithm to analyze my data.
Why am I not jumping up and down at this news, when it sounds quite promising?
Maybe because it’s Pinktober and I’m exhausted by all things breast-related.
Maybe because even if the First Warning Systems turns out to revolutionize breast cancer screening, it’s too late for me and many of my friends, whose lives have already been turned upside down by the dreaded disease, never to be fully righted again.
Maybe because after years of the “war on cancer” and “fighting for a cure,” progress has been slim to none and I don’t want to get my hopes up.
Maybe because there’s no mention in any of the literature about whether the “smart bra” is smart enough to figure out a way to fill in the divots caused by radiation, to smooth out scars left by mastectomies and reconstruction, to even out an asymmetrical rack, or to camouflage a less-than idea decolletage.
Or maybe because the “smart bra” doesn’t come in pink.
A woman I know from the gym told me that when she saw that the NFL has gone pink for Breast Cancer “Awareness” Month, she thought of me. I smiled politely and said thanks; she’s about the age my mom would have been had she lived, so I want to be respectful. I’m never quite sure how to handle this. On one hand, I don’t want to be the poster girl for breast cancer. On the other hand, I don’t want to seem ungrateful for an acquaintance’s goodwill and kind thoughts. I always limp along in such encounters, then I flee the scene wondering if I reacted in an acceptable way. But, like so much associated with the cancer “journey,” there’s no road map, no guidebook, no real clue on how to handle this stuff.
At first blush, the NFL going pink to support breast cancer seems like a pretty cool thing. I wrote about it last year, and my first impression was how cute! NFL players in pink cleats, gloves, chin guards, skull caps, and sweatbands was so cute! I took it at face value, not being much of a football fan, and I wasn’t bothered by the coaches’ pink ribbons or pink caps, nor by the refs’ pink whistles or the pink tees on the field. However, another year wiser about the pinkwashing phenomenon and another year exhausted by the “awareness” campaign, I’m thinking it’s not so cute. Some of the players have personal ties to breast cancer, having lost a loved one to or had someone they love affected by the dreaded disease. I give them a pass. Guys like Ravens’ wide receiver Jacoby Jones, who has two aunts who have survived breast cancer. He says that wearing pink shoes and pink gloves “means something. For my aunts to fight through that and beat it, that’s some strong women. So I’ll wear it for them.” Another wide receiver, Kyle Williams of the 49ers, will put on the pink for game days in honor of his grandmother, who died from breast cancer in 2005.
If it were just about the National Football League’s largesse and compassion toward a disease that kills nearly 40,000 women in this country every year, I’d say, that’s cool. If it were about players showing their love and admiration for friends and family members who’ve battled breast cancer, I’d be behind them. Even if it were about the NFL designating breast cancer as the charity du jour and earmarking some of the $9.5 million dollars earned in revenue last year, I’m good with that.
However, it’s never that simple, and because breast cancer is the “sexy” cancer, the “glamour” disease, there’s something inherently rotten in the pink plethora splattered all over pro football stadiums across the country. Because breast cancer involves well, yeah, breasts, it easily grabs everyone’s attention, and like so many other things that have been pinkwashed in the name of “awareness,” it means a breast cancer patient or survivor can’t even watch a football game without being smacked in the face, yet again, with the reminder of this damned disease.
In trying to nail down exactly what it is about the pinkwashing of the NFL that bugs me, I came up with this. First and foremost is the emphasis on breast cancer “awareness.” Perhaps the Vikings cheerleader pictured below wants and/or needs everyone to be “aware” of her breasts (BTW, the Denver Broncos cheerleaders are sponsored by Dr Ben Lee, a plastic surgeon who specializes in breast augmentation, and Laura Vikmanis, a Cincinnati Bengals cheerleader, says in her memoir that at least half of the 36 cheerleaders have implants, and a third of those without are planning to get them, and that there was much dissension in the cheerleaders’ locker room between the haves vs the have nots. A Philadelphia plastic surgeon cited Vikmanis’s book on his website in relation to the Philidelphia Eagles cheerleader tryouts. He commented on the rigors of NFL cheerleading: “Twice-a-week weigh ins and the grueling conditioning routines make it hard for women to maintain adequate fat reserves to have proportionate and shapely breasts, so breast implants are often the only way for women on the squad to remain both fit and feminine.” Breast implants are the only way for an NFL cheerleader to look fit and feminine? Wow. We certainly wouldn’t want women out there running around with disproportionate and unshapely breasts, would we?)
The NFL’s “A Crucial Catch” program aims to increase breast cancer “awareness” but I can’t help but ask why we’re so fixated on awareness, when being aware of the disease does nothing to cure it. Why does the program exhort women older than 40 to get an annual mammogram, when mammograms don’t save lives? Does anyone really find the “early detection” message touted by programs such as this to be effective? Sports Illustrated writer Peter King is of like mind, and after he tweeted “Please. Not pink for a month, NFL. A week, great. But a month?” he found himself on the receiving end of a lot of criticism, with people responding outright hatefully. Writer Mary Elizabeth Williams came to King’s defense on salon.com. She pointed out that it’s possible to hate the disease as well as the commodification. And, as she astutely points out, “because if we didn’t see pink on the football field throughout October, how else would any of us know that it’s breast cancer awareness month? How would we be aware?” Breast Cancer Action executive director Karuna Jaggar adds “We don’t need more awareness; we need solutions. We’re looking for progress that makes a difference in addressing and ending this breast cancer epidemic.” Does anything about A Crucial Catch speak to the breast cancer epidemic?
Secondly, show me the money. Several groups have had a little look-see into the NFL’s A Crucial Catch program and found that while it may be eye-catching, all that pink isn’t doing all that much good for the actual disease or the people suffering from it. Proceeds from the NFL pinking it up go to The American Cancer Society, which sounds pretty good, but Business Week discovered that just 5 percentage of sales will make its way to the ACS. According to Business Week, for every $100 in sales of pink products, $3.54 goes toward research while the NFL keeps approximately $45. Considering the NFL’s healthy revenue last year, and the crazy salaries NFL employees make, this seems particularly stingy. An NFL spokesperson countered the Business Week report by saying that while the league does not dispute the numbers above, it does not profit from the sale of pink merchandise, but that whatever money isn’t donated to the ACS is spent covering the cost of the Crucial Catch program, which is designed to increase “awareness.” Ah yes, the same type of accounting that caused the Susan G Komen for the Cure to fall out of favor with the very women it’s supposed to be helping. Spending such a disproportional amount of money on “awareness” instead of research is nothing short of irresponsible.
My third issue with the NFL going pink may be unpopular, but the fact is, the NFL doesn’t seem overly concerned with women’s issues or our bodies. Exhibit A: the cheerleaders. What exactly does a bunch of tarted-up, implant-sporting women gyrating on the sidelines have to do with the game? Do the fans in the stadium need to be encouraged to cheer for their team? Do the viewers at home require a bit of eye candy to break up the monotony of seeing big, sweaty men up close and in high def? More importantly, did anyone from the NFL think about how breast cancer survivors might feel seeing the NFL cheerleaders decked out in pink boy shorts and itty bitty tshirts that can barely contain all the breastly goodness of those augmented cheerleaders? Does the NFL think that breast cancer survivors need yet another hit to their flagging body images and fledgling self-esteem after radiation mutilates our breasts and surgeries remove them altogether?
Exhibit B: the league is historically soft on players who’ve been charged with crimes against women. Columnist Maura Kelly wrote about this for the New York Daily News, citing cases such as the one against Hall of Famer Lawrence Taylor, in which he admitted to raping a 16-year-old girl in 2010. And that of famed quarterback Brett Favre being accused by more than one woman of sexual harassment. And that of Steelers quarterback Ben Roethlisberger being accused of sexual assault by two different women. Defensive tackle Albert Haynesworth got handsy with a waitress last year and pleaded no contest to her charges of sexual assault. None of these players received more than a slap on the wrist from the National Football League. Yet, during the month of October, the league wants me to believe that it cares about me and million of women across the country? Throw a bunch of pink on the field and call it good?
Nice try, NFL, but I’m not buying it. It’s going to take more than pink accessories and lip service about the importance of screening to convince me that the league really cares about women.
How many more days until October ends?
October 13. The day my mom died. It’s here again, and 7 years later, it still sucks.
They say time heals all wounds, but I say “heals” is a bit of a stretch. It’s more like time puts a too-small and not-so-sticky band-aid over the gaping wound where your heart used to be. They also say that you never get over such a loss, you just get through it. Whoever “they” are, they got it right that time.
I still miss her every single day, in one way or another. Her big, genuine laugh. The way she fretted incessantly. Her habit of always taking my kids’ side, even when they were naughty and unruly. The daily phone call, even when she had nothing much to report. Her ability to worm her way into anyone’s heart. Watching her in the kitchen, and marveling at how she knew how to get everything just right.
The list goes on.
I’ve written a lot in this little blog about how much I miss my sweet mama. I’ve read a lot about losing one’s mother. I’d like to think it helps, that it’s somehow therapeutic to get it out, to empty my heart and head onto the screen. When I come across a particularly interesting or helpful tidbit on the subject of mothers and/or loss, I jot them down. I usually forget to include the attribution, as I did here:
Motherhood isn’t a test but a religion, a covenant entered into, a promise to be kept.
No idea who wrote that or where I came across it, but I like it, and my sweet mama definitely embodies those ideals.
This one was in O Magazine, and again, I neglected to give credit where credit is due. To the author of these wise words, I apologize, but please know that your words moved me enough to pull out my iPhone, tap on the Notes icon, and copy the passage for quiet reflection at a later date:
You never get over what you lost. You always carry it with you, stitched to you like Peter Pan’s shadow. And you never wanted to get over it, because who wanted to forget a time that had been so important? No, the truth was, you wanted to remember it always.
I guess I’d say that it’s impossible to forget something (someone) so important. I do carry her with me, and I will never get over the loss of her. If I’m half as important to my two kids, a fraction as beloved, I will consider my life a great success.
I read a book review a while back about Caroline Kennedy’s book Jacqueline Kennedy: Historic Conversations on Life with John F Kennedy. (Whew, long title.) In the review, Caroline talked about how at age 53, accomplished and well-educated, she still referred to Jackie O as “mummy.” We never get over losing our mothers.
She went on to talk about the qualities she most admired in her mom, which she wanted to highlight in the book: the sense of strength, her passion for reading, and her will to move forward despite the pain that had come her way.
I can relate to that. My mom was amazingly strong, but in a quiet and gentle way. She loved to read and was a middle school English teacher in her life before becoming a full-time mother. And she had seen her share of pain: losing her own mother at age 13, raising her younger sister, losing that sister to pancreatic cancer, then enduring her own protracted and awful cancer battle.
I can relate to everything Caroline Kennedy says. My mom wasn’t as glamorous as Jackie, and I didn’t grow up in Camelot. I do have a brother named John, though; however my mama wouldn’t let anyone call him John-John or Johnny. Our neighbor across the street tried to call him Johnny, but my determined mama nipped that in the bud. She named him John after my dad’s uncle who immigrated from Greece. His name was John and she insisted that he be called John.
When Caroline Kennedy listened to the 8 hours of interviews between Mrs Kennedy and Arthur Schlesinger, which Caroline used to make up the book, she had a strong reaction. She says, “I read them right after mum died and had the sense she was speaking to me again. I could hear her saying what I was reading (smiles).”
What a precious gift. To hear my sweet mama again would be such a treasure. I have to work hard to remember what her voice sounded like. The more time that passes, the harder it gets. The more years that roll by without her, the less I feel like I know her. She seems to be fading from me.
I still call upon her a lot, especially in the kitchen. Just the other day, I was helping my favorite girl in the kitchen. She’s doing an ongoing bake sale to raise money for her class trip to Washington, D.C. and was baking my mom’s pumpkin bread. The house smelled sweet and spicy, the cinnamon, allspice, cloves and nutmeg redolent of fall (even though it was 90 degrees outside). Watching my girl take on a task (raising money for her trip), executing her plan, and carrying on my mom’s fine tradition of expressing her love through food made me proud. And sad. Because I knew how much my mom would love to see my girl doing her thing. She would fret over my girl, telling her to scoop the flour lightly, without packing it down. She’d say, fold the dry ingredients gently into the pumpkin mixture so the bread will come out light and fluffy instead of dense. She’d tell my girl to clean up as she went along, so that there won’t be a giant mess at the end. And she’d scold my girl for wanting to taste the batter; my mom grew up on a farm with chickens and was always leery of eating raw eggs.
I needed my mama that day in the kitchen with my hard-working girl. After the pumpkin bread baked and we let the loaves rest in the pan for 10 minutes, we knew to turn them out onto a rack to cool. But the still-warm bread was so moist it was very soft on the bottom, and I didn’t want the rack to make marks, or even worse, for the bread to stick to the rack. If we turned the loaves upside down, to rest on their tops, would the racks still make marks? What to do? Mom’s recipe didn’t address this important question, and although I’d seen her make pumpkin bread countless times, I couldn’t for the life of me remember what she did with the cooling loaves. And I sure couldn’t just call her up and ask her.
My mom and my girl didn’t get to spend much time together, because cancer stole YaYa from my girl when she was just 3 years old. No fair.
They didn’t have a lot of time together, but they made the most of it.
Read more about my sweet mama: