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.
It’s not just an excuse to go postal or blow off some steam, it really is making me crazy. The prolific presence of Pinktober is making me nuts. I’m seeing red (of which pink is a derivative, I suppose). The other day, a woman in the grocery store was sporting one of the worst pink offenders, IMHO, the “Save the Tatas” shirt. I saw her and her offending shirt in the produce aisle and felt a sick feeling in my stomach. I was barely in the store and was already being thrust into the belly of the beast. Just walking in the store, I was accosted by a huge display of “awareness” crap — flower arrangements, helium-filled balloons, potholders, even pink-ribbon bedecked cakes, for cryin’ out loud. Sheesh.
Do those of us who have tangled with this damn disease really need to run the gauntlet of reminders of said disease just to get into the grocery store? Sheesh.
Maybe the display of pink junk that greeted me at the store set me up so that when I saw the “Save the Tatas” shirt, I was primed and ready for a tussle. I tried to be respectful. I did. I entered into the conversation with every intention of getting her point of view. I’m curious, genuinely curious, as to why a grown woman would sport such a message across her chest. So I pointed to her shirt as our paths crossed by the giant pile of pumpkins (which thankfully had not been painted pink). I asked her if she’d had breast cancer. Just curious. She said no, she has not had breast cancer. Oh, so you know someone who has? I asked. No, but she bought the shirt to support breast cancer awareness.
Ah, yes, “awareness.” More “awareness.” The “awareness” we all so desperately need.
The interrogation continued as I asked her if she was aware of how buying the shirt helps, and what, in her opinion, does “awareness” even mean? She didn’t really have an answer for that. Huh.
I pressed on, like a dog with a bone, and asked if she was aware of which charity received proceeds from the purchase of that shirt. Again, no answer. At this point, she was probably wondering how to contact security in the grocery store. I concluded our little chat by telling her that I have had breast cancer, and I do know many other women who have as well, and that those of us in the pink ribbon club don’t care for those shirts because some of us were put in the unpopular position, through no fault of our own, of not being able to “Save our Tatas,” and that seeing such messages serve as a stark and unwelcome reminder of that most unpleasant fact.
She said she’d never thought about that. She was not aware of that.
I bet she’s also not aware of the fact that once you lose your tatas, each and every glance downward or glimpse in a mirror is a smack in the face. That even after reconstruction — or multiple reconstructions — those tatas will never be the same. Some women end up with a version they like better. Some end up with a version that makes them sad each and every time they see that new, not-so-improved version.
She and I parted ways, me feeling marginally better for having unburdened myself, her probably feeling like she needed to go home and lie down. Hopefully she went home and threw that damned shirt in the garbage, where it belongs.
Then I hear that our local professional soccer team, the Houston Dynamo, is hosting an “awareness” event of their own tomorrow. The first 5,000 fans at the Breast Cancer Awareness Match will score a mini pink soccer ball. Sweet.
Not so sweet.
Tell me, please, anyone, what the scantily-clad cheerleader in the pink attire has to do with breast cancer? Or is that what it takes to get people to attend the event? Questions, people–I have questions!
I had to dig pretty hard to find any info on the actual event. While these images are splashed all over the web, details on what the event really is all about remain elusive. The Dynamo website shows a much less exciting image:
But when I clicked on the link to bobby boots breast cancer/Dynamo Charities, I got nowhere. The computer told me that the page I sought could not be found. Bummer. My next question: is the bobby boots breast cancer image above, with the philanthropic player (who I assume is Bobby) and the soccer-cleat-wearing pink ribbon, that much less effective than the perky cheerleader in her push-up bra? Do people really care less about this dreaded disease if it’s marketed without actual images of breasts?
Great, here we go again.
This time, I didn’t accost the person sporting the offending message because the light turned green. But I wanted to. I wanted to say, Can you imagine in your wildest dreams putting sticker on your car that says “balls! support testicular cancer research!” Or “ovaries! egg-makers or silent killers?” No, me neither. As the shirt says, It’s all about the boobies.
It certainly isn’t “all about the boobies” — it’s about a woman’s life, and how BC threatens and too often takes her life. I’m still waiting for an explanation of how any of this boobie culture makes any difference in the “fight” against breast cancer. If you see a guy wearing a shirt like this, does it enact any change whatsoever in the BC arena?
I wonder how he would feel if I wore a shirt saying “PROSTATES make me happy”? I can’t even find an image of such a shirt because guess what — it doesn’t exist! No, instead the prostate cancer “awareness” shirts look like this:
“I Wear Blue for My Dad” conveys a slightly different message than “Save Second Base.” It says the focus is on the person, not the body part. The take-away message here is that sexualizing a devastating disease does nothing for those who suffer from it.
Well, wait a sec — I take that back. Sexualizing a devastating disease does do something for those who suffer from it. It makes them feel bad. Really bad. It makes them mad. Really mad. It makes them want to accost random people in the grocery store or at the bank and set them straight. It makes them have to confront the fact that at this very moment, they may be crossing that bridge from “survivor” with NED to stage IV without a cure. I will never, ever forget the feeling of utter fear when the first oncologist I consulted said once a cancer comes back, no matter what stage it was upon original diagnosis, the recurrence sends you straight to stage IV and you’re considered incurable. Not that you’re going to die from it, as many stage IV cancers can be managed, but treatment is ongoing, as in, for the rest of your life (however long that will be).
That, my friends, is the reality of breast cancer. Not a cutesy slogan. Not a titillating (pun intended) t-shirt. Not an overtly sexual bumper sticker. It’s not about the boobies. It’s about my life.
One year. 365 days. Or, 366 days with a leap year. Either way, a year is a long time, a lotta days. So much can–and does–happen in the span of a year. Each day is ripe with possibility, and none was as much so as March 2, 2011. Ralph Waldo Emerson once said, “Write it on your heart that every day is the best day in the year.” Looking back at this day last year, I’m taking his advice and am going to write it on my heart: being one year out, exactly, from The Big Dig makes this day the best day in the year. This time last year, I was once again in a hospital gown while my cabal of surgeons brandished multi-colored Sharpies to designate the roadmap that would lead us out of the ravages of infection.
I haven’t yet processed all the thoughts and emotions attached to this day one year ago. I don’t know when or how that will happen. My reconstruction surgery was big. Epic, even. After a long and winding road of “whatever can go wrong did go wrong” post-mastectomy, getting to the point of being able to have reconstruction was major progress. All of the research, doctors’ powwows, appointments, testing, and paperwork involved was just the tip of the iceberg. Then came the actual procedure, and then the recovery. None of those, however, are as arduous as it is to wrap my head around the “journey” that reconstruction was–and still is–for me.
Because I haven’t yet wrapped my head around my reconstruction “journey,” and because frankly I’m kinda scared to pick at that scab and let loose the torrent of emotions lying under the surface, I’m not going to write about it. Yet.
Instead, I present highlights from the surgery day and the days and weeks that followed. As you loyal readers will remember from this time last year, it was several days before I was able to sit at my computer and type. My trusty stand-in bloggers were the hubs, Trevor, and my surgery sherpa and dear friend Amy. They filled in for me when I was unable to process a coherent thought, sit upright, or use my arms.
While I never got bogged down in the “Why me?” school of thought regarding the complications that ensued from my cancer “journey,” I know now that there are a lot of thoughts and feelings still untapped regarding the perilous trek from normal person to breast cancer patient to survivor. So busy was I handling the logistics of each new complication that dealing with the emotional fallout took a backseat to just getting through each new hiccup. I know all you arm-chair psychiatrists out there are shaking your collective heads and tsk-tsking me for tamping down these thoughts and feelings. I would pass the same judgment on any other poor sap in my shoes. However, you do what you gotta do to get through the worst times, and “when you’re going through hell, keep going,” as Mr Churchill so sagely advised.
Mr Churchill would probably also advise me to quit talking about it and get to it, so here, without further ado, are the highlights (or are they lowlights?) of The Big Dig.
After the surgery was finally complete, Trevor was eerily prophetic when he forecasted the tough days ahead: “She is still awake but in a bit of pain. They are not fooling around with it at least and they just upped her pain-med clicker along with a nice big slug of morphine. We have some tough days ahead while she recovers but everything looks great so far.”
After surgery and the recovery room, I was shipped straight to ICU for an unpleasant stay that seemed endless. In Recovery Trevor wrote, “We made it through the first night in ICU. The nurses checked on her every hour last night so she didn’t get too much sleep though. They have ordered a regular room for her but they won’t let her out of ICU until she sits up in a chair for an hour. They just wheeled the chair in, this is gonna hurt.”
I remember how ominous it was when the chair was wheeled into my room. A hush filled the room as everyone realized what was about to take place. Anyone who’s had a C-section knows how difficult it is to move straight after, and with a hip-to-hip incision, “difficult” barely covers it.
Trevor wrote about making the switch from ICU to a regular hospital room: “Finally out of ICU. It took forever to get out of there, there just seemed to be always one more thing. They had to take blood and couldn’t get enough from the line in her hand despite much digging and infliction of pain. They finally just opened up her chemo port and had it done in a snap. Of course they had already packed her up for transport so the morphine pump was temporarily disconnected. But Nancy is a bad ass and toughed it out.”
I have no recollection of this at all. That’s probably a good thing. I’m glad I was a bad-ass about it, though.
In So Long ICU Amy wrote: “She’s super tired. Come to find out her new breasticles have to have their arterial blood flow checked once an hour and it’s been that way since the surgery ended yesterday and will be through tomorrow…..so cat naps abound. They made her get up and have a ‘sitting trial’ time for an hour and she did really well. To hear her tell the doctors about it, it was ‘hard’ but as an observer she handled the “trial” with grit and humor–typical Nancy. Tomorrow’s plan is to do a little bit of walking and take a shower.”
It wasn’t long before the wailing & gnashing of teeth commenced. As soon as I made the transition from drugged up to mildly lucid, I figured out that this wasn’t going to be an easy recovery. In Utter Exhaustion Amy explained: “I’ve only had to charge her the $10 for ‘having to put up with your complaints fee’ twice today. As much as Nancy would like you to think she’s a troublesome patient, she is not, at all. In fact, the staff enjoy her very much. Her easygoing nature was complimented today when she had to make the effort to get in the chair to sit for another hour. Le, her nurse, commented about how Nancy’s attitude really made her job easier.”
I put on a happy face for my medical peeps, but was a bit more realistic with my closest caregivers.
Amy continues: “Complaint number 1: This particular complaint is what brought on the $10 charge twice today. The ICU room was hot, very hot. In fact there were heaters brought in just for this purpose…two of them. Seems that the stomach tissue that they harvested for her new rack doesn’t realize that it has to get its heat source from her body instead of the outside air, so for the next few weeks Nancy needs to have a warmer than normal outside air temperature. I think the docs even suggested turning off the AC at her house once she gets out of here, but Nancy and I decided to let that one go over our heads. Nancy actually assessed herself the charge after I mentioned that I charge $10 at my house for being ‘grouchy, irritable, or just plain mean.’ Then she said, ‘And you can charge me another $10 for this one…..’ Complaint number 2: Headache. A bad one. She’s been dealing with this all day. The nurses say she had a pretty major dose of morphine in the ICU so that is a side effect of morphine and it should work itself out as she uses less and less morphine. Because of this, Nancy has decided that Mr. Morphine Pump may not be summoned every time the pain surges. She’s thinking about it before she presses the button. On one side there’s the headaches. On the other side there’s the pain. It’s a delicate seesaw to manage.”
“The good news is that despite the pain, she managed to move from her bed to the recliner, sat for an hour, then ambulated back to the bed with only 1 morphine pump at the beginning of the whole scenario. The nurses are impressed with how tough our girl is!”
I still owe Amy $20. Maybe more.
My intrepid sherpa wrote the Morning Report the day after I was released from ICU: “This morning the muscle tightness and tenderness in the belly incision reared its ugly head and has taken the forefront in the battle for attention. While Nancy hasn’t actually called it pain, I think that may be the best word for it. There’s a lot of bruising around the hip-to-hip incision, and the docs said that they did had to work hard with her muscle layer there as well as on her chest wall so this is to be expected. She has been given Flexeril (a muscle relaxer) to help with this and the added benefit is that it makes her VEEEERRRYYY sleepy. So, even though at 5:15 AM, Nancy was confident that she was up for the day and we did the teeth brushing and face washing that comes with a new day, she was within minutes back to sawing logs. Good Girl! She has been dreaming out loud and woke asking me, ‘Is that due tomorrow?’ You can take the Mom out of the home but you can’t take the Home out of the Mom!”
Whatever assignment was due hopefully got done; I have no idea what it was!
Rejuvenated?? was written 2 days after surgery, by Amy: “Mr. Morphine Pump and the rest of his crew are yet again dust in the wind. Nancy is free of anything that follows her on a pole. She does have 6 drains and 2 doppler wires, plus her central line access port, so she’s still got a little gear. The big event today was a shower. Well, all I have good to say about that shower is that Nancy is clean. One word I could use to describe how Nancy tolerated the event was that she was speechless. So, suffice it to say that the pain from the ab incision reached out and grabbed hold of her. By the time she had recovered enough from the trauma of the shower to find her voice she said, ‘That’s NOT happening again! I’m clean enough!'”
Finally, I was able to post for myself and in 1 Week Ago, I got to it: Long story short, the flaps [newly fashioned breasts from belly tissue] were cooperating, the morphine headache abated, some regular food arrived, and life rolled on. At some point they moved the flap checks to every two hours instead of hourly, which was mighty nice. It’s amazing how your perspective changes in a situation like that. After umpteen hours with no food, a simple PB&J was a delicacy. After being awake most of the night, a short cat-nap seemed a decadent luxury. While I feel a whole lot better and am ready to get back to normal, my handlers think one week post-op is a bit premature to jump right back into the day-in, day-out routine. I am trying to take it easy. I’m resigned to the fact that I’m back to one outing a day for a while, and sadly, a doctor’s appointment counts as an outing. Yesterday I had a small entourage escort me to for my checkup, and we had a bite of lunch (sans margaritas) beforehand. The handlers insisted on snapping a photo of this maiden voyage, and there was some talk of me earning a margarita for every device I had removed at the subsequent appointment. Between the two doppler wires and the 4 JP drains, somebody owes me 6 margaritas. No salt.”
A little later, in Wisdom from the DL, I got real about my hatred of all things invalid-related: “I’ll never be good at being a spectator in my own life, and I’ll never be one who enjoys the journey in my haste to get to the destination,but I have learned the value of time & place and that sometimes you have to be instead of do. I’ve learned to chant It’s temporary a thousand and one times to remind myself that while this is my life, it won’t always be like this.”
One year later–one very long year that was equally horrific and hard yet insightful and triumphant–I’m still reminding myself.