In this article for The New York Times, Peggy Orenstein addresses one of the many tricky topics surrounding breast cancer: to remove or not remove the “unaffected” breast?
It’s a tricky topic because the research and prevailing medical consensus are in direct opposition to gut instinct. Research says a bilateral mastectomy in patients with cancer in just one breast has little impact on survivability. Doctors say the odds of surviving low-grade noninvasive breast cancer is the same whether we undergo a lumpectomy or a mastectomy. But our guts often say “lop em both off.”
That’s what my gut told me to do, even after extensive research and number-crunching. My gut instinct leaped immediately to a slash-and-burn tactic. My darling breast surgeon required me to wait at least 3 days before making my decision on the lumpectomy vs mastectomy debate; I complied but my decision was made in the first 10 minutes of grasping my diagnosis. My gut told me to opt for the bilateral mastectomy.
I suppose this puts me in the category of women opting for a CPM, or contralateral prophylactic mastectomy. The experts whom Orenstein spoke to about the CPM debate refer to the increase in women undergoing CPM as “epidemic” and “alarming” and believe it is driven by women not fully understanding the math. Girls have always been bad at math, right? That’s the message I got, growing up in the 1970s in suburban America.
A 2013 study done by Boston’s famed Dana-Farber clinic revealed that women younger than 40 with no increased genetic risk who had cancer in one breast believed that “within five years, 10 out of 100 of them would develop it in the other; the actual risk is about 2 to 4 percent.”
Upon my diagnosis, I understood the math. It wasn’t easy and it was confusing. It took time and effort, but it was not beyond me (having a math guru in the house helped tremendously, but the point still stands). I understood that my chances of successfully removing the cancer in my “affected” breast was the same whether it was done via lumpectomy or mastectomy. I understood that my chances of developing the same cancer in the other breast were slim to none, because, as Orenstein says,”cancer doesn’t just leap from breast to breast.” I understood that low-grade noninvasive lazy cancers don’t typically become deadly; it takes a cancer that metastasizes to do that.
I also understood that a bilateral mastectomy is not an easy surgery. Not by a long shot. As Orenstein so colorfully describes it, “breasts don’t just screw off, like jar lids.” Undergoing a mastectomy involves not only losing the breast itself but also (typically) the nipple and areola, as well as the lining of the chest muscles. Factor in the JP drains that are snaked into the traumatized chest, just to add insult to injury. I couldn’t lift my arms for days after my mastectomy and needed help with the simplest things, such as brushing my teeth and applying chapstick. I needed a new, temporary wardrobe of tops that buttoned or zipped up, because lifting my arms over my head to put on or take off a shirt was a no-go for my battered upper body. I needed help — lots of help — which doesn’t jive with my stubborn and independent countenance.
I knew that choosing the harder road of a bilateral mastectomy over the easier, less-invasive lumpectomy did not increase my odds of surviving breast cancer. At least according to the studies. I knew that a mastectomy is much riskier than a lumpectomy. I knew that recovery would be much harder and more time-consuming. Nonetheless, my gut told me to take that more difficult road. My gut was right.
Orenstein spoke to Steven J. Katz, a University of Michigan professor of medicine and health management. He studies medical decision-making, and has found that people tend to react from the gut when confronted with a diagnosis because we are wired to make “fast-flow decisions” that make us want to flee. Understandable to anyone who has been on the other side of the doctor delivering bad news. Upon diagnosis, Orenstein recalls feeling “as if a humongous cockroach had been dropped onto my chest. I could barely contain the urge to bat frantically at my breast screaming, ‘Get it off! Get it off!'” Her version involved a giant cockroach; my version involved a scorched earth.
Dr. Katz says that doctors need to understand how our gut reaction affects our post-diagnosis decision. He speaks of “the power of anticipated regret: how people imagine they’d feel if their illness returned and they had not done ‘everything’ to fight it when they’d had the chance. Patients will go to extremes to restore peace of mind, even undergoing surgery that, paradoxically, won’t change the medical basis for their fear.”
It is a paradox: our intellectual self versus our gut.
Orenstein points out that “it seems almost primal to offer up a healthy breast to fate, as a symbol of our willingness to give all we have to and for our families. It’s hard to imagine, by contrast, that someone with a basal cell carcinoma on one ear would needlessly remove the other one ‘just in case’ or for the sake of symmetry.”
While it may be hard to imagine, there’s no way to predict how one will react to a cancer diagnosis. All the studies and statistics are worthless in the face of the worst-possible scenario, which is facing cancer. I was 40 years old, with 2 kids under the age of 10, when I faced that scenario. Of course I thought of them and the possibility of leaving them motherless and rudderless. Having lost my own sweet mama brought that into even clearer focus. Perhaps my decision to undergo a CPM was based more on emotion than on rational thought. No doubt my gut was driving that bus.
But guess what? My gut is a careful and prescient driver. In steering me toward the more-radical surgery option, my gut saved me. Maybe saved my life, but definitely saved me from undergoing a second mastectomy, one that would most definitely not have been of the CPM variety.
My “unaffected” breast had cancer, too. And Paget disease to boot. Nothing had showed up on any of the myriad tests or scans I’d had before my mastectomy. It was the surgical pathology on the “unaffected” breast that finally revealed those cancers. How long would those cancers have grown, unannounced and unaccounted for, had I not followed my instinct and listened to my gut? I don’t like to think about that.
I’ve learned — the hard way, of course — that I’m one of those medical weirdos whose body does not conform to standard protocols. I’m the kook who gets the weird stuff; to wit, Paget disease accounts for a mere 1 to 4 percent all breast cancers, according to the National Cancer Institute. Ditto the post-mastectomy infection I contracted. Who gets a microbacterium fortitum?? So few people that my infectious disease team — yes, I had a team of ID docs — still wonders where the hell that originated.
We medical weirdos don’t fit into studies or facts or figures. We are the ones who keep their doctors up at night, scratching their heads and wondering what?? what?? what is going on here?? We are the ones for whom the “if it can go wrong, it will” axiom applies. We are the ones who make other people reassess the shittyness of their situation (you’re welcome, by the way).
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?
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.
I wasn’t planning on writing about Giuliana Rancic’s breast cancer diagnosis in October or her decision to have a double lumpectomy or her announcement that her double lumpectomy has morphed into a double mastectomy. Much has been written about it, and she’s done the talk-show circuit, and I didn’t feel the need to comment on the latest celeb to begin a cancer “journey.” However, the more I read about her story, the more compelled I am to comment.
First, when her cover issue of People magazine hit the newsstands, it nearly caused me to have a heart attack. I was mindlessly unloading my loot from my shopping cart and putting it on the conveyor belt when I caught a glimpse of this:
I didn’t notice the photo or her name, but was drawn in by the bold yellow headline and wondered, who’s that and what’s she got that is serious enough that she has to fight for her life??? Imagine my shock when I read the fine print and realized that it’s Giuliana Rancic and she’s got what I had — breast cancer. After the shock wore off, I thought I’d better see how serious her diagnosis is; after all, if she’s fighting for her life, it must be bad. I’m thinking stage 4 with mets everywhere.
The article in People, titled “The Fight of My Life,” speaks of her “devastating cancer diagnosis.” I’m thinking this is really bad.
As I read on, though, I learned that her BC was caught early and had not spread.
So does this mean that early-stage, non-metastatic BC qualifies one to be deemed “fighting for one’s life”? If that’s the case, what does that mean for women whose BC is not early stage and has spread?
This kind of overwrought journalism really bugs me. I know that People has to sell mags, but good grief, how about a little truth in advertising? The cover story of “I’M FIGHTING FOR MY LIFE” in big, bold letters nearly caused me to stroke out, and left me thinking I really underplayed my BC story. My cancer was in both breasts, not just one, and I never declared that I was fighting for my life. I’m thinking I seriously mishandled this.
I’m certainly not one to kick a sister when she’s down. That’s not my intent at all. I wish her the best; I truly do. Cancer is a terrible thing, no matter what age or what stage one is when diagnosed, and I certainly don’t mean to give Rancic grief — she’s enduring enough of that as is. However, I do wonder about some of the comments she’s made. I was hoping they were taken out of context, but ….
She said that the double lumpectomy didn’t get all the cancer so she was moving forward with a bilateral mastectomy, and I totally support her saying that deciding to have a mastectomy “was not an easy decision but it was the best decision for me.” Agreed. But when she went on to say “Not only can it [mastectomy] save your life, but you can come out feeling healthier and with a positive self-image”
Ladies, raise your hand if your bilateral mastectomy left you feeling healthier and with a positive self-image.
Come on, show of hands.
On The Wendy Williams Show the other day, Rancic spoke openly about her surgery and how she thinks it will affect her: “Listen, I love my girls, but I’m gonna feel more like a woman when this is all done.”
“I’ll be able to say that I survived something major and it’s made me stronger. I will be a better woman for it.”
I hope she’s not setting herself up for a very big, very traumatic fall.
Rancic went on to say that “scars are beautiful. I think scars tell a story.”
Yep, there’s a story there all right. Millions of women can attest to that. There is most definitely a story there. Hopefully not a horror story.
I wonder if she’s seen any images from The SCAR Project. I was blown away by photographer David Jay’s shots the first time I saw them, and receiving The SCAR Project book is one of the best gifts ever (thank you, Trevor). The women are beautiful, and their strength and kick-assed-ness is beautiful. The scars, not so much.
Giuliana Rancic speculated of her breasts after reconstruction: “They might come out looking even hotter. You gotta have fun with this. We find the humor in everything. Bill helped pick ’em out. I’m like, ‘Bill, that big? Really?'”
They might come out looking even hotter.
I’m gonna have to linger on that idea for a minute.
And when I’m done, I will contemplate the damage that occurs when people say things that imply that facing breast cancer is a tidy event that requires surgery and treatment then fast-forward on to the happily ever after. While the happily ever after certainly can, and does, happen, I think it’s misleading to say that BC is something you deal with and move on. The idea that after cancer comes transcendence is flawed. The idea that all you have to do is wrap a big pink ribbon around a cancer battle is flawed. The idea that everyone comes away from breast cancer a better, stronger person is flawed. It’s not that easy, it’s certainly not pretty, and it doesn’t always result in the kind of change you would consider positive.
In speaking of Rancic’s mastectomy, her husband Bill said, “Our goal is to be done with this by Christmastime and not look back. We’re taking the rear view mirror off the car and we’re not looking back, because we’re going to be done.” Well, considering she had the surgery two days ago, and is still in the hospital, I hope she’s “done” by Christmastime. It’s good to have goals.
Maybe the whole cancer thing is still too fresh for me, too raw, but the idea of not looking back is weird and foreign and borderline incomprehensible. Maybe there’s a pair of magic “don’t look back” glasses that gets passed out upon diagnosis, and I missed out on that. I can see how that might happen as I’m always in a hurry and might have scooted out of Dr D’s office before anyone had a chance to give me the “don’t look back” glasses. Or perhaps I was supposed to get them from my oncologist, but was so freaked out by the fact that I have an oncologist that I ran out of his office before I got the magic glasses. Maybe Giuliana got her glasses in advance; one of the perks of being a celeb and having cancer. Personally, I don’t know how one can experience a cancer “journey” and not look back. I hope it works out for her.
If any of y’all are going to be in Times Square for New Year’s Eve, look out for Giuliana. And be sure you don’t bump into her. Those mastectomy scars and JP drain holes take a while to heal.
Summertime, and the living is easy. Sam Cooke said it, well, sang it actually, a long time ago. The fish were jumpin’ and the cotton was high. The girl he was singing to had a daddy who was rich and a mama who was good-looking. All was right in Sam’s world.
Well, the living is easy all right. No alarms waking me up before I’m ready, no lunches to pack. Payton’s lunch is easy: sandwich, bag of baked chips, string cheese, Rice Krispie treat, and a drink. No lunch box, no ice pack — he’s too cool for that. Macy, on the other hand, is quite particular about her lunch, requiring 5 different things, some of which must be washed & chopped and placed into small tupperware. She does at least take the same thing every single day, much like her mama did as a schoolgirl. I had a homemade egg salad sandwich on wheat bread every day of my schoolgirl life, and didn’t care one lick that the other kids thought the egg salad looked gross and the brown bread looked weird. They could have their stick-to-the-roof-of-your-mouth Wonder bread PB&J any day. I was perfectly happy with my gross-looking egg salad on weird-looking bread.
So no lunches to pack, yea. No mountain of school paperwork to wade through, only to find that other than glancing at the grades at the top of the completed work, there’s not a single thing in that mountain that really matters. No racing the clock to get out of bed, gobble down breakfast, get dressed, and get out the door. No meanie mom enforcing a highly unpopular bedtime so the little darlings don’t act like feral hogs in the a.m. Last but not least, no school projects. Oh, how I despise the projects. After 18 years of living with the original slacker student, who did minimal work and gasp! even skipped school projects altogether yet made good grades and somehow managed to become a contributing & successful member of society, my opinion on school projects has definitely changed. Changed to hatred, that is. They’re messy, time-consuming, inane, and require ME to go to Hobby Lobby AND help with said project when I could be playing tennis.
Ok, rant is over.
I certainly hope I didn’t offend any teachers out there. If I did, please direct your hate mail to my husband, the original slacker student. It may take him a few days to reply, because he’s busy running a software company. I’m not sure he could have risen to such heights and attained 2 graduate degrees without that pivotal diorama he made in 3rd grade at Jenks Elementary.
Ok, now my rant is over.
So we are blessedly free of the strict schedule imposed by the Fort Bend Independent School District, and most thankfully free of the blasted school projects. We can go where we want to go when we want to go there, stay up late, and eat lunch when we please. All that sounds great, right?
Except for one tiny detail: I don’t do well with unstructured time. Remember me, the busy-body? I don’t blossom with a lot of downtime. It’s day 3 of summer, and I’m already feeling a little itchy, a little twitchy. As much as I dislike the hustle & bustle of the imposed school schedule, it does keep us on track. And I like that. I need that. I would have been great in the army.
Lots of people enjoy their downtime and get into being lazy. For me, laziness makes me feel icky. I really like having a to-do list every day and relish the feeling of being productive. Some people were laughing at me that on the first day of summer, I cleaned out the garage, did 4 loads of laundry, vacuumed the entire downstairs, and bagged up discarded clothes for donation. Before lunchtime.
Now that my kids are a little older and a bit more independent, summer isn’t as stressful because I can still get my stuff done without having to watch them every second. The ever-present possibility of a toddler finger in a light switch cramps my style and interferes with me crossing things off my to-do list. With the luxury of semi-independent children, I’m trying to relax more this summer. That, and the burning desire to suck every drop of summer this year, since last summer was such a bust.
Last summer, I was not only recovering from a bilateral mastectomy but also playing hostess with the mostess to a nasty, long-staying bacteria that exploded into a messy, hard-t0-diagnose-and-even-harder-to-eradicate infection. I spent some extra time in the hospital, multiple times and multiple hospitals, and had a few extra surgeries. I weathered the ups & downs of being an impatient patient, and learned the hard, hard lesson that no matter how nicely I treat my body, it can and will betray me. As my sweet mama would have said, “That is rude, crude, and socially unacceptable.”
Last summer I missed out on a lot, thanks to Mr. Mycobacterium. This summer is going to be different. I’m going to spend some idle time, and hopefully learn to like it. I’m going to float in the pool with my kids and my crazy dog, and not worry about the laundry piling up or the dishwasher needing to be emptied. I’m going to teach my kids to cook, and not stress over the messy kitchen. I’m going to drag them away from the TV and computer games and into the museum district, and not get discouraged when they complain about how boring it is.
However unstructured this summer is, it’s gonna be great. Summertime and the living is easy.
Haven’t been feeling very bloggy today, which is unusual for me as I’m rarely at a loss for words. The norm is for me to wake up with a blog topic in mind, and I generally have several other topics infiltrate my brain every day as I go about my daily business. Some are interesting, and if the planets are aligned properly, I jot down a note or enter the info in my phone for later, but sometimes I don’t slow down enough and think I’ll remember it all on my own. Ha! That seldom works out for me. Who knows what brilliant blog posts are lost in my grey matter because I was cocky enough to think I could hold that thought in my head while my brain is on overdrive, processing all the medical hoo-ha since surgery.
Of the blog topics that do survive to see the light of day, however, some make the cut, some don’t, and lately the topic du jour is dictated by the most recent medical flare-up, break-down, or blow-out. Sometimes there’s an embarrassment of riches in the complication department.
But today the blog muses weren’t speaking to me. I chalked it up to the cabin fever, ennui, and general restlessness that accompany my current house arrest. I’ve been laying low all week (and it has been a long week) for a very specific purpose: to decrease the amount of fluid exiting my body and entering the JP drains so that I can get those damned drains removed.
I’ve had a bit of a history with the drains, going back to the mastectomy, and because I’m a busy-body, my drains’ output tends to be high and they have to stay in longer. I think I had 2 drains for 5 weeks post-mastectomy; can’t remember exactly but it felt like forever, and once they were finally removed, skin was growing around one of them and had actually adhered. Yes, the removal was ugly and painful.
But that’s not why I hate the drains. I can handle the ugliness and the pain. I can handle the discomfort of a rubber tube stitched into my side. I can handle the hole in my body with said rubber tube coming out. I can handle the creepiness of not knowing exactly how far that sucker is threaded through my body. I can handle feeling like a medical freak show when I go in public with said tubes sticking out and snaking from my sides into my sling bag. I can handle the wardrobe challenges presented by needing to cover up yet accommodate and not smoosh, all at the same time. I can handle the draining of them everyday, even though what comes out is nasty and not always liquid (and that’s all I’m going to say about that).
I understand the value and purpose of JP drains. I know that if the drains weren’t sucking the fluid out, it wouldn’t magically go away but would instead pool inside my body and create a seroma. I need a seroma, or any other complication, about as much as I need a hole in the head, as my sweet mama used to say. So I make peace with the drains, even though I curse them under my breath and despise them and rue the day they entered my life. Seriously rueing the day here.
I’m not loving my house arrest. I’m not so good at the “doing nothing” phenomenon that many people seem to embrace. I don’t enjoy this “down time” and I stink at being lazy. I especially don’t enjoy forced laziness. It’s just not for me. I understand and accept it but not happily and I would kick & scream to protest but that’s not very restful.
Day One of House Arrest was easy because by the time I got home from my appointment with Dr Spiegel at the med center, it was almost time for school to be out, and the day was half over. Day Two passed uneventfully; I watched a movie but don’t even remember now what it was. By evening, I was starting to get cabin fever but managed not to bitch about it too much. Day Three of House Arrest seemed longer than Day Two, but I watched another movie that was worth mentioning, and I may even have to write a review of; if you can’t wait for that, the movie is City Island with Andy Garcia and Juliana Margulies. It’s good. Really good.
The highlight of Day Four of House Arrest was the arrival of Melanie and little Luke of the million-watt smile. Melanie is kind enough to bring me a big cup of Green Drink and to blowdry and flat-iron my hair, since I’m still not supposed to lift my arms that much. We had a great visit and there’s a lot to be said for having clean hair, but there’s something kinda sad about the highlight of the day being over by 10 a.m. Sigh.
I’ve discovered that sitting in front of the computer can be a gigantic time-suck. Who knew? I usually sit at the computer (and “sit” may be stretching it, since I tend to perch on one corner of the desk chair, all the better to jump out of it fast and move on to the next task) briefly. I’ve never been one to spend all day in front of the computer. I don’t really enjoy reading from the screen (yet I love my kindle, so way to go, kindle creators). I’m not a gamer, either, so I don’t lose myself in the online gaming world. I thought about taking up online gambling, but I like to shop too much to throw my money away, so that’s not going to happen.
I do get a lot of info from various breast cancer organizations, and I usually skim the bevy of emails in my inbox on the topic, deleting more often than fully perusing. This one caught my eye, though, both because I have time on my hands to notice it, and because it seems so insistent and urgent. This one email contains multiple links, each one clamoring for more attention than the next:
Don’t Restrict Access To Mammograms!
Help Women With Breast Cancer by Covering Their Medical Bills!
Support Breast Cancer Genetic Marker Testing!
On Sale: Pink Ribbon Water Bottle!
Stop Canceling Women’s Policies!
Fund Women’s Exams in Remote Guyana!
Also a lot of urging me to tell Secretary of Health & Human Services Kathleen Sebelius what I think and which programs she should and should not endorse.
I’m not making this up. Even in the midst of my wealth of free time, I couldn’t make this up. The email is from a group called Greater Good Network! No idea who they are or how they got ahold of me, but I do know this: they use a lot of exclamation marks. Yes! They do! A lot!
That makes me tired. The forced excitement! And the wide range of serious health issues! And the political ramifications! I’m going to have to unsubscribe from their distribution list. Reading one email made me tired. Wonder if I have time for a nap.
Yesterday was one of those “both” kind of days. It was my first visit to his office since the big surgery, and when I walked in the door, his nurse gasped, I can’t believe how well you’re walking! I told her the same thing I told my tennis teammates when I went to watch their match Wednesday: it’s been more than a week since the surgery; I’m done.
I’m wardrobe-challenged again, like I was post-mastectomy. While it seems like an eternity ago that I was scrounging through my closet after the mastectomy to find something, anything, to wear, it’s all coming back to me now. How complacent, how cocky I have been in recent months, thinking I can just pull any old thing on and get out the door. Now it’s once again a carefully orchestrated project that involves lots of shuffling, digging, flipping, re-hanging, and cursing. This time, though, the challenge is because the remaining drains are at the super-long incision on my belly. One drain on each hip, like an unruly set of twins. I’m starting to despise those twins. I got a mild scolding from Jenn (Dr Spiegel’s PA) when I saw her Tuesday because I was wearing jeans, and they don’t want anything to rub on that gigantic tummy incision. I may just start wearing my pajamas everywhere until that bad boy heals. Or maybe I’ll wear whatever I want and send the same message that Shia LaBeouf sent. Seemed to work well for him.
The first thing the good doctor noticed when he graced my exam room was that I have several bruises on my leg. I got him good, though, by telling him they were from playing tennis. The look on his face was priceless. Oh how I wish I had a freeze frame of that look. That moment between what he thought (she’s been playing!) and reality (no way she could have played already, it’s only 10 days post-op) shines in my memory as one of my favorite moments.
Every visit to my doc’s office results in innumerable nuggets of wackiness. First runner-up for nugget of the day was when his nurse said she thought my new chest looked really good. I said, yeah, if you’re into that sort of thing. What I meant was, if you’re into a mostly cleaned-up mess, a partially cleared train wreck, and that the docs did a great job with the concaved, ET-looking chest I ended up with after the infection. Compared to that fresh hell, the new, improved version is pretty amazing. And as a testament to the skill and artistry of the surgeons, yes, it’s great.
The highlight of yesterday’s visit came when the good doctor examined my tummy incision and took a look at my lower half. Remember how he thought I needed to gain a bunch of weight to provide the building material for the new girls? And how even after I gained several pounds, he was still convinced it wasn’t enough? Well now that the dye has been cast and the pounds that weren’t reallocated have stuck, he’s not happy with the extra bit that settled on my hips, and says, and I quote, “We need to suck that right out. We need to get rid of that. I’m going to suck that right out so it is gone.” I swear, There is no pleasing that man.