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).
As if one case of breast cancer isn’t enough, how about two cases?
Identical twin sisters Kelly McCarthy and Kristen Maurer from Indiana share a lot of things — including breast cancer. The 34-year-old sisters saw first-hand how devastating cancer is when their mother died from colon cancer last year. Like so many struck by breast cancer, the sisters had no family history of the disease.
Apparently it’s not all that unusual, though, for identical twins to develop the same cancer, because they have the exact same genetic makeup. In addition, twins also have a mirror effect, with one twin getting cancer in one breast, and the other twin getting it in the other breast. McCarthy and Maurer were no different in this regard.
Their treatment was similarly influenced by each other: McCarthy was diagnosed first, with triple-negative breast cancer in her right breast, while 9 months pregnant. A week later, her baby was born, and shortly thereafter she started chemo & radiation, then had a mastectomy. Because of her sister’s diagnosis, Maurer got tested and found early-stage cancer in her left breast and had a bilateral mastectomy with tissue expanders and then implants.
McCarthy’s reconstruction was a bit different: instead of going the more common route of tissue expanders to implant, she decided on a second mastectomy on the “unaffected” breast and flap reconstruction of both breasts. The problem was, she didn’t have enough fat & tissue to create two new breasts. I had a similar experience, sorta. Well, minus the identical twin sister, but sorta. I had extra fat before my DIEP reconstruction, aka The Big Dig, just not enough in my belly, the main harvesting site for DIEP surgery. Instead of having a twin sister donate her excess fat, I had to gain weight so that there would be enough excess in my belly. I went on the All-Butter-Lots-of-Cheese-Bottomless-Beer-Mug diet and packed on 12 pounds. Sadly, not all of it went to my belly (the rest I happen to be sitting upon as I type).
The worst part of the forced weight gain? No, it’s not the leftover junk in my trunk or the persistent craving for beer. It was the “Grab the Fat” game I had to play, more than once, with my plastic surgeons to determine whether my fat was fatty enough. Egads, I’d almost forgotten about the “Grab the Fat” game. I wrote about in this post,
“I thought I’d plumbed the depths of humiliation with the ‘grab the fat’ game we played more than once in preparation for reconstruction. In this game, the doc asked me to drop my drawers so he could grab my belly fat and determine if it was plump enough and plentiful enough to construct a new set of knockers. In a modified game of Twister, he had me sit, stand, and lean over to see just how much fat I had around my middle. Not once, but twice.
Humiliating doesn’t quite cover it.
But today, it was total humiliation, all humiliation all the time. I was basically splayed out like a deboned chicken on the exam table while he searched and plotted. Ladies and gents, just imagine your least favorite body parts being put under the microscope so to speak. Just consider for a moment being asked to stand up, sit down, and contort your body in the absolute least-flattering ways so that the softest, flabbiest, most-despised parts of your body are on full display. And then have those parts analyzed and calculated to determine just how fatty they are. We go to such lengths to de-emphasize these body parts, yet mine were being trotted out like the prize-winning hog at the state fair.”
McCarthy was fortunate enough to skip the “Grab the Fat” portion of the DIEP journey, but her sister probably endured it, because she donated her belly fat & tissue so that her twin could get reconstruction via DIEP surgery. Maurer underwent abdominal surgery — not a tummy tuck, people, because there’s no free lunch in breast cancer — to harvest the goods for her sister’s other breast.
How awesome is that??
Like most twins, McCarthy and Maurer share a close bond. But now, McCarthy said, “I feel closer. Her tissue is over my heart.”
This is breast cancer awareness.
The SCAR Project is in town. My town. I went yesterday. What an experience.
I was dilly-dallying around about going and trying to convince myself that I am too busy to take time out of my jam-packed schedule. Truth is, I was a little nervous about going. I was nervous about seeing the incredibly powerful images and then confronting the emotions they would inevitable bring to the surface. I’m 3 1/2 years out from my diagnosis, yet I know that at any given moment, cancer can upend my “new normal” and bring me to my knees.
I suspected that seeing The SCAR Project images, full-size and in person, would upend me and bring me to my knees. They did.
Seeing them in person, however, is a completely different experience.
I certainly hope I didn’t offend by snapping a quick photo. I don’t see things like this in the ‘burbs where I live.
Nestled into a quaint neighborhood surrounded by bustling businesses, Gremillion & Co Fine Art, Inc., is spartanly understated. The lush greenery surrounding the modern-but-not-out-there building and the pieces of sculpture flanking the gallery speak to the idea of popping inside for a quick fill of art in the middle of the day.
I gotta come back in the spring and see this wisteria in bloom.
Enough stalling. Time to go inside.
There’s a sign on the gallery door that requests that visitors keep their conversations to a minimum and in a whisper because of the gripping, emotional response people have had to the photographs. While some not so intimately acquainted with the beast that is breast cancer might find this intriguing and perhaps even titillating, it did not have that effect on me. I felt certain my initial misgivings about witnessing the photos were true.
A small table filled with programs and copies of The SCAR Project book stands in the entrance. A cut-out window just behind revealed a man eating lunch, and I realized that man was David Jay, founder and photographer of The SCAR Project. I asked the docent if that was indeed him, and she nodded. I told her that I’m a survivor who greatly admires his work. She said, I thought you might be a survivor.
How did she know? What caused her to suspect? Perhaps the majority of visitors to the exhibit are. Or perhaps she read the fear and trepidation in my eyes. Either way, she smiled sympathetically and stepped away. Next thing I know, David Jay is standing right beside me, saying hello. Wow. I told him how much I admire his work and how grateful I am for him telling the real story. Not the “prettied-up, pink ribbon” story. He nodded and said, “That’s why the subtitle of this project is ‘Breast Cancer Is Not a Pink Ribbon.'” Amen, brother.
In the exhibit program, Jay is quoted as saying, “Still, through all of this, there is beauty. Soul. Courage. These are the things which cannot be taken away.”
Jay told me that he never envisioned working on this project, but that after a friend was diagnosed, the project was born. His mission: to show what breast cancer really looks like, especially in young women; to fundraise for research; and most importantly, to empower the women who have been affected and to hopefully allow them to see the beauty, strength, and resilience in the aftermath.
“For as long as I can remember, I have struggled with body-image issues. Losing my breasts and developing thick, red scars across my chest only made matters worse. I could not bear to look at myself in the mirror. I hope that being a part of The SCAR Project will help me to see something beautiful for a change. Maybe it will help me appreciate my body….It has, after all, created and sustained two new lives; it has fought cancer and won. It’s time I started giving it, and myself, much deserved respect. Maybe if my scars were viewed as art, it would help me to heal.” — Gabrielle, age 30
“The most important part of being photographed was that it made me feel beautiful. It was an opportunity for me to stand tall and strong with my scars and redefine my beauty for myself.” — Emily, age 32
“My challenge has been and continues to be to accept the sorrow, focus on the joy, and remember to share both with the ones I love. Survival is about more than breasts: it is about courage, strength, and the many other attributes that make a woman beautiful.” — Jill F, age 28
In her SCAR Project bio, she says that “a weapon, a FLAK jacket, and a Kevlar helmet didn’t protect from THIS enemy.” She goes on to say that “I am not going to ever get over breast cancer or move past it. I will love with it for the rest of my life. Remission is not a cure.”
Not surprisingly, scars are a recurrent theme among the women featured. “My scars are powerful lines that point to hope, faith, and love.” — Candice, age 30
“Our scars are there to remind us of the times in our lives that are important to remember and they paint a story of not just survival, but of living.” — Eliza, age 22
Some of the quotes by the women featured are so sad, yet so true:
“Cancer does not discriminate; it doesn’t care who you are.” — Jessica D, age 22
“An East-Indian girl, I was a mother to a toddler who fed from cancerous breasts for 20 months. A wife to a husband who left because he feared what my cancer would do to his life. A sister to a man who didn’t know what to say, so said nothing.” — Sona, age 36
“Cancer took so many things from me, but the one thing I may never get over losing is my sense of security. Blood work and tumor markers allow me to live my life in 18-month intervals, but cancer is an unpredictable beast.” — Toni, age 28
“I lost all of my hair, looked like ET, got my boob hacked off along with 9 lymph nodes, got zapped by so much radiation my skin burned and bled, and will need to cut open my stomach and relocate my fat and muscles to my chest. I think sometimes I am so good at putting on a pretty face and acting all put-together that people don’t realize the extent of everything that breast cancer survivors go through. My scars and words are only half the story. They don’t show the emotional and private struggles that are continuously present.” — Vanessa, age 25
Something else Vanessa said really resonated with me: “I’ve never wanted to be the center of attention, or to be regarded as ‘special’ or ‘brave.’ I don’t need to be pitied or felt sorry for. In life, there’s a beautiful balance of happiness and sadness, awareness and unawareness, acceptance and rejection, blessings and misfortunes. These dualities are the moments that define life.”
Not all of The SCAR Project women survived. David Jay tells the story of Jennifer, age 27, who could not travel to New York for her photo shoot because her cancer had spread to her liver. She wanted to do it, though, and asked Jay if his studio had wheelchair access because she could no longer walk up the stairs. Jay told her, “Just come, I’ll carry you up the stairs if I have to.” She never made it to New York.
Each of the women featured in The SCAR Project has an important story to tell. Each has experienced things that profoundly and permanently changed them. Each faced the terrifying reality of cancer at a young age.
As I left the exhibit, I saw David Jay outside, on his cell phone. I waved to him as I walked past to my car. Pulling out of the garage, I thought, I should ask him to sign my program. But I didn’t want to interrupt his phone call. What to do? What to do? Interrupt him. Ask him.
For more information, go to http://www.thescarproject.org. Follow The SCAR Project on Facebook and Twitter (@thescarproject). Watch the Emmy-winning documentary Baring It All and purchase The SCAR Project book.
It’s been way, way too long since I’ve spent any time on this little blog. It’s been a rather busy time around here, with the start of school. Two new schools and a long drive to and fro (the schools to which my kids are zoned correspond with our new house’s location and not the location of the temporary house we’re crashed in while the building proceeds at a snail’s pace) makes for a rather truncated day. Couple that with the fact that high school and middle school start and end on rather opposite schedules (he starts early, she starts late), and I’m in the car a lot. A whole lot.
To those sweet souls who have inquired about whether I’m done blogging, here’s the answer. I’d speculate that I’ll be done blogging as soon as I’m “done” with cancer. Which will be never.
While it’s true I don’t have the “everyday” cancer to deal with anymore, it’s still around. Always around. I’ve moved past the “everyday” cancer — surgery, recovery, wound care, infection fallout, constant doctors’ appointments, sorting through mountains of medical bills, battling insurance, researching treatment pros & cons, yadda yadda — but it’s still around.
Case in point: minding my own business at a red light yesterday making yet another run to or from one of my kids’ schools and I glanced at the car next to me. On the back windshield is a HUGE pink ribbon sticker. I mean HUGE. It took up enough space to make me wonder how the driver sees out that window. And bam! cancer is in my face. I wasn’t thinking about anything cancer-related, yet there it is, always ready to insert itself into daily life. While I recognize the intent behind those who put pink ribbon stickers and magnetic decals on their cars, I don’t know that I will ever get used to the insidious power the dreaded disease has to permeate every aspect of life, even years down the road.
Another example: I overheard a conversation between two ladies at the gym about a mutual friend of theirs undergoing her third lumpectomy. Third. On the same breast. Again, I was minding my own business, sweating like a pro wrestler and sucking wind while I finished up my cardio. As I plucked my earbuds out of my ears, what do I hear over the sound of my own heavy breathing as my heart is pumping and my lungs are expanding and my muscles are burning and my brow is dripping? Cancer. More cancer.
I resisted the urge to insert myself into the conversation and tell those ladies to advise their friend to skip that THIRD lumpectomy on the SAME BREAST and instead strap on her battle gear because this beast is determined to take up residence in her. Cancer is very rude that way. Uninvited, unwanted. Always around.
The backlash surrounding Angelina Jolie’s announcement that she has a prophylactic bilateral mastectomy is a lot of things: stunning (not in the good way), discouraging, upsetting, disgusting, rage-inducing, sad…the list is long.
I keep telling myself to just stop reading the negative headlines and judgmental comments, but I can’t. I’m drawn to them like a thirsty girl to a sparkling glass of bubbly.
The comments range from stupid to mean to crazy. This crackpot goes way out on a limb with a conspiracy theory (thanks to my friend Katie for alerting all of us to this blood-pressure raiser). A couple of gems from Mike Adams, who calls himself the Health Ranger, but whom I’m calling Senor Crazy-Pants:
“The cancer industry wants to funnel women like cattle into their slash-poison-burn system of quack treatments. And Angelina Jolie is their new cheerleader. Scarred and no doubt experiencing the chest and armpit numbness that almost always accompanies mastectomy surgery, she now seeks to ‘inspire’ other women to exercise their own sick ‘choice’ and have their breasts removed, too!
“It is the sickest invocation of women’s power that I’ve ever witnessed. This is not empowering women, it’s marching them into self-mutilation. And the ‘risk’ is a complete fraud. In truth, Angelina Jolie had a higher risk of dying on the operating table than dying from breast cancer if she simply followed an anti-cancer lifestyle.”
According to Senor Crazy-Pants, we could avoid cancer with a healthy diet and lifestyle. So it’s my fault that I got cancer, even though I don’t eat meat, choose organic, strive for a plant-based diet, and avoid processed foods and environmental chemicals.
“This is no less than a media stunt to gain more market share to stay up high on the A list.” Right. As if her every move isn’t chronicled by papparazzi. Going to the grocery store is People-worthy news for her.
“RIP Angie’s boobs. You had options, dummy!” And what options would those be? Living in fear? Wondering if this year’s well-woman exam would turn up a lump? Hide under the bed and hope it all blows over? Who’s the dummy here?
“Angie cuts off her boobs, Brad’s gonna be f****** the nanny!” Yes, because nice boobs are the only reason a man would want to be intimate with a woman.
“What a waste of a bangin’ set of boobies.” The waste here is that this commenter is alive and breathing air while Angelina’s mother is dead from ovarian cancer.
“Angelina Jolie’s boobs have been removed…I’ll never smile again.” I’ll give this tweeter partial credit for being creative, but that’s it.
“Because you can never be too careful these days, with the cancer industry scaring women half to death at every opportunity. ‘My breasts might murder me!’ seems to be the slogan of many women these days, all of whom are victims of outrageous cancer industry propaganda and fear mongering.” Damn that cancer industry and its propaganda and fear mongering!
“Being an empowered woman doesn’t mean cutting off your breasts and aborting live babies — even though both of these things are often celebrated by delusional women’s groups. Being an empowered woman means protecting your health, your body and your womanhood by honoring and respecting your body, not maiming it.” Damn those delusional women’s groups. And I guess I missed the news story that Jolie had a late-term abortion as well as a mastectomy. Were they at the same time?? Did the “highly unprofessional” surgeon referred to in a previous comment perform the abortion, too?? Is that covered by insurance??
One of my fellow bloggers had a much more useful comment. When I read it, I copied it and pasted it, but forgot to attribute it, and now I can’t remember who wrote it. Apologies, ladies. If this is yours, please tell me so in the comments section so I can thank you properly. “There are no ‘good’ choices in such cases: only bad and worse ones. Making them in Jolie’s situation, when your own mom has died of cancer, is even harder.”
Truer words are seldom spoken (or typed). While I’m a proponent of freedom of speech in general, I wish there were a rule that prevented idiots and mean-spirited fools from spouting off on something with as much gravitas as Jolie’s decision. I wish there were a policy stating “If you haven’t had cancer, your voice will not be heard.” I wish there were an amendment upholding the right of those of us who’ve lost a beloved member of our tribe to speak about the pain and grief and unfillable hole left by that person’s death. I wish there were a mute button to be used when people spew garbage about a situation in which they know nothing.
I really wish that everyone who takes the time to render their judgement and register their opinion on a total stranger’s wrenching choice would read Jackie’s post on this heated topic:
“I have a message for people of the judgmental persuasion. Until you know what it’s like to hear the words ‘You have cancer,’ or to lose your mother or sister or daughter to it, you don’t get a vote. (Even then, you don’t get a vote; but you’re far less likely to want one.) Check the beam in your own eye, if you tend toward the Biblical. If you don’t, let me put it in language you’ll understand. Shut. The. Fuck. Up.”
thank you, google images, for providing such lovely graphics.
sorry about the formatting; not sure what’s up with that.
I got a phone call from Myriad Genetics the other day, in the middle of the day. I was hard at work and not pleased about being disturbed. I looked at the caller ID to ensure it wasn’t one of my kids’ schools calling to report a sudden onset of vomiting, saw that it was neither the elementary nor the middle school, and chose not to answer. I got back to work — in this case, carefully wrapping and packing my excessive collection of martini glasses, even though I’m not a martini drinker and have never caught on to the trendy flavored martinis. Why do I have all these glasses? When was the last time anyone in this house drank anything besides beer from a bottle or champagne from a flute? If I decide to ditch the martini glasses, do I still need to wrap each one before donating them? Why is this one glass so much bigger than the rest? Where did it come from, and why do I only have one this size?
See why I don’t have time to answer a call from Myriad Genetics?
Truth be told, I figured in the millisecond of conscious thought I devoted to that readout on the caller ID that someone from Myriad Genetics must be calling to collect on a medical bill from months ago. At this point in my cancer “journey,” I have had so many tests and receive so many bills from different labs, physician groups, and hospital management companies, I would need a manager to keep them all straight. In the early days of this “journey,” my health insurance company provided a patient advocate, who acted as my manager. When I received a bill I didn’t recognize, I could call her and she would do the leg work — both with my insurance company and with the vendor billing me — to determine what I really owed and why it wasn’t fully covered. I have a 3-ring binder that is stuffed full, I mean completely full, of copies of medical bills. That binder tells an evolutionary story about my cancer “journey” from the first days of diagnosis in which I set up carefully labeled dividers to contain each category of my cancer: notes from doctors’ appointments, research, copies of test results, and a motley assortment of insurance clobber. In the days of feeling good, I would carefully note at the top of a medical bill the details of that particular transaction: the date I paid it, or the contents of the conversation with the patient advocate. In the dark days of being sick, sick, sick from the post-mastectomy infection, the correspondence is shoved helter-skelter into the notebook, crumpled and noteless. These days, doctors’ appointments and test results are few and far between, which is a good thing since the binder is so full. There is no room in the inn. My choices are continue stuffing stuff into the overly full binder, or start a new one. I don’t like either option.
Back to Myriad Genetics.
I didn’t give the phone call another thought; my thoughts were quite consumed with the martini glass collection, and my brain is rather full with the ginormous list of tasks required when moving house. I didn’t think about Myriad Genetics or the genome testing involved in the cancer “journey” until the story broke about Angelina Jolie’s preventative mastectomy. In her eloquent New York Times article, Jolie mentions the costliness of the genome testing she underwent that detected her risk factor (in her case, an 87 percent chance) of developing breast cancer and that the cost is a barrier for many women. I remember taking the Oncotype test to expose the exact characteristics of my cancer. My breast surgeon ordered the test so that we could better determine exactly what we were dealing with and decide on the best treatment, yet my insurance company denied payment because they don’t cover genetic testing. I don’t recall the exact cost of the Oncotype, and I’ve already packed my overstuffed binder, but it was definitely several thousand dollars. However, the cost of the test was a pittance compared to the cost of the chemo that two oncologists recommended before I consulted a third, Oncotype results in hand, who said chemo wasn’t necessary and in fact, would cause more harm than good. That nasty post-mastectomy infection was the final nail in the proposed chemo’s coffin; the Oncotype cost some stacks but it saved my insurance company even more.
Which brings us back to Angelina Jolie and her subtle yet effective reference to the cost of such tests and the disparity between who can and cannot afford such tests. I also had the BRCA test that Jolie subtly yet effectively mentions, and remember thinking, wow — $3,000 for swishing Scope around in my mouth then spitting the minty saliva into a collection cup? And yet that $3,000 test determined that I do not carry the gene that predisposes me — and my daughter — to breast and ovarian cancers. Jolie’s BRCA test revealed that she does carry the gene, hence her preventative mastectomy.
Why does any of this matter? Well, beyond the age-old debate about the haves and the have-nots in health care, of course. That’s enough of a reason. Equally important,though, is the fact that Myriad Genetics has patented the BRCA1 and BRCA2 genes. They own the genes, essentially, which gives them a monopoly on testing. Therein lies the problem. With a monopoly, other scientists and other companies can’t get in on the gene testing, which shuts the door on any possibility of discovering better and less-expensive testing methods. While Myriad Genetics needs to make a buck, just like every other company, the stakes are high when we’re talking about shutting out many customers who may not know about their genetic risk of cancer until it’s too late.
The Los Angeles Times described the situation quite succinctly:
“At issue is whether a human gene sequence can be patented. That’s the broad question. The two specific sequences patented by Myriad — BRCA1 and BRCA2 — are genes that suppress tumors. A small percentage of women have defective copies of those genes, and they are extremely likely to develop a virulent form of breast cancer. They also face a higher-than-average risk of ovarian cancer. Myriad’s patents give it an unusual degree of control over researching and testing for BRCA defects. Only Myriad can legally isolate the BRCA1 and 2 sequences. In the United States, that means only Myriad’s lab can conduct a full sequencing test to check a patient for the innumerable possible mutations of those genes.”
Should Myriad Genetics be allowed to essentially own these genes? That’s up to the Supreme Court to decide. The ruling is expected next month, and the debate will likely be heated before, during, and after. I’ll keep ya posted.
Driving my favorite girl to school today, my head was full of thoughts of all the things I need to get done. It’s her birthday weekend, so we have a jam-packed schedule of festivities, which means much to do before we celebrate. I was running through my mental to-do list and chatting with the birthday girl about the cookies she would hand out to her classmates on the funny monkey napkins. Our spirits were high, although I felt my inner throttle revving up, readying my body and brain to rush from one task to the next in a balls-out effort to get ‘er done. Get all of ‘er done.
This is one aspect of myself I don’t relish. I’m always in a hurry, rather impatient, and tend to rush through the journey to get to the destination. I’m not a “smell the roses along the way” kind of girl. Perhaps this is common in overachieving busy-bodies. Or in the legions of other suburban at-home moms whose work is never done in ferrying children to and fro and ensuring there are adequate provisions to keep the troops clothed and fed. Or maybe it’s just me.
Anyhoo, there I was in the car with my girl en route to school, thinking about going to Walgreens to pick up yet another prescription; hitting the grocery store for kid wine (sparkling cider) for tonight’s kid party and for crayons for my girl’s science fair project; going to the gas station to fill up and get a quick car wash, as well as scratch cards for the birthday girl (yes, gambling starts early around here, and the fact that my girl requests scratch cards for Christmas and her birthday is an insight into her wacky personality); driving my other kid to school; gathering the stuff for the party-favor goodie bags; wrapping the gifts; sweeping, mopping, dusting, and freshening the powder bath since the party guests will arrive this evening and I’m the whack-job type who thinks the house must be spic & span before guests invade; and cleaning out the twigs & leaves that fall into the back seat of my car on top-down days, since the party guests will be riding with me.
Just when I thought my full-to-the-brim brain might overtake me, the universe intervened and saved me from myself.
As we traveled down the street, we drove under a wire that stretches across the road, up high. Maybe it’s a telephone wire, or perhaps a DSL cable. I don’t know; I’ve never even noticed it before, but it traverses the street I drive up and down a thousand times a week, every week. Today as I traveled that street, a fat squirrel was dashing across the wire, doing a squirrel tight-rope act. The movement caught the eye of my girl, who spied the bushy-tailed performer through the open roof of the car. We slowed down, literally and figuratively, to watch. I slowed even more when I realized that if that squirrel fell off that wire, he’d plop right into my car. While my animal-loving girl would love that, I didn’t relish the thought of it.
With no cars behind us, we slowed to a crawl to watch the rodent acrobat scurry across the wire, high above the road. His tail bobbed in the air as he ran across that wire, and I imagined his little squirrel hands (paws?) gripping tightly. My girl wondered aloud if he was nervous or confident in his attempt to cross the road, and that naturally led to her ad-libbing a few “Why did the squirrel cross the road?” jokes. Ahh, the humor of an almost-11-year-old.
Our squirrelly performer trucked across the last length of wire, safely making it to the other side. The punchline to the “Why did the squirrel cross the road?” joke that most tickled the girl making them up was “Because he needed to scratch his butt!” The squirrel was gone, and a car approached, forcing me to move forward. As we neared the school, my girl said, “Mom, I’m sure glad we saw that squirrel on the wire. That totally made my day.” And then I realized: while the jam-packed to-do list seems so important, and completing those tasks to ensure a kick-ass birthday weekend for my favorite girl is important to me, what’s really important is noticing the moments of everyday wonders, and savoring them. The squirrel on the high-wire smacked me in the face with that realization. My girl re-affirmed it.
Much has been written, on this blog and elsewhere, about how surviving cancer can make one appreciate life even more. I will never, ever, ever say that cancer is a gift or that it’s changed my life for the better or that there is a silver lining under that dark cloud that so rudely interrupted my life with disease, infection, and worry. Never. I appreciated my life and the bounty of good things in it just fine without having to lose my breasts and a chunk of my security along with them. I lived life out loud before cancer robbed me of my belief that if you do the right things and try your best to be a good person, that bad things won’t happen. I gave thanks for the friends and family and privileges that exist in my life before this wretched disease snuck into that thankful life and dislodged my sense of me. I realized that random fate of being born in the time, place, and family I was born into was as much a player as hard work in creating this charmed life, and I knew that before cancer entered and laid waste to my body. I appreciated the little things in life, and knew in my heart that it’s those things, not a new car or a big house, that lay down a basis for a fulfilling life; I certainly didn’t need cancer to bully me into realizing this fact.
Surviving cancer and an insidious infection didn’t teach me to appreciate life’s everyday wonders. But a squirrel on a high wire sure did.
WordPress is outstanding. I give all credit to the Hubs for choosing WordPress as my blog home. Actually, he gets all the credit for this little blog’s existence. He
bullied convinced me to transition from Caring Bridge to a “real” blog. I wasn’t sure I had the chops or the audience for a “real” blog, but he was right on both counts. See, I’m neither too proud nor too Greek to admit I was wrong.
bullied convinced me to leave the safety of Caring Bridge for the wide-open world of “real” blogging, he set out to find the best blog host for me, and WordPress won that contest, hands down. Not to knock those blogs hosted by other, non-WPsites, of course, but WP never asks me to “prove I’m not a robot” by entering a string of jibberish into a little box before my comment can be published. WP never requires me to identify myself each and every time I want to post a comment on someone else’s blog. The brain that powers WP is big enough to remember who I am every time. There’ve been times when I’ve abandoned a comment I was planning to leave on another blog, after carefully composing it (or just rattling off a stream-of-consciousness thought) because the process of proving I’m not a robot and having to enter my credentials took too long or crashed my computer. Not so with WordPress.
I got a handy email from the dear folks at WP the other day saying this: “The stats helper monkeys prepared a 2012 annual report for this blog.”
They provided this cute graphic as well. Thanks, WP; now I don’t have to troll googleimages to find something to pretty up my post.
The good people at WP crunched a lot of numbers and came up with this analogy for my little blog:
19,000 people fit into the new Barclays Center to see Jay-Z perform. This blog was viewed about 100,000 times in 2012. If it were a concert at the Barclays Center, it would take about 5 sold-out performances for that many people to see it.
Click here to see the complete report. Thank you, stat helper monkeys, for this annual report. What a cool gift. Those helpful monkeys laid out my all-time most-viewed post for me. How interesting. If someone — or some monkey — asked me to pick what I thought my most-viewed post was, I’m not sure I would have thought of this one. But I’m not a stat-crunching monkey, now, am I? I’m someone who still counts on her fingers sometimes, and who always resorts to a 20-percent tip in a restaurant because the math is just easier. What I don’t know about stats and numbers and most-viewed posts is a lot.
I’m humbled and tickled and perhaps a bit surprised to see how far-reaching this little blog has become. My heart is warmed by the blog friends I’ve made through this little blog. Women and men around the globe from all walks of life, united in one thing: the need to pour out our hearts onto the WP screen, to try to make some sense of the curveballs life has thrown us. Whether cancer or life in a foreign land or the pursuit of a goal right here at home, my blog friends write about the stuff that is foremost in their minds and filling up their hearts. Through good news (the latest scan was clear!) and bad (the dreaded mets), through everyday events and life-changing ones, we share. We comment. We connect. We come together.
And that, my friends, is a beautiful thing.
As we shed this year and look forward to a brand-spanking-new one, I will take some time to reflect on this little blog and all its stats and numbers. As I prepare for a year-end blow-out celebration with dear friends and lots of champagne, I will think of my blog friends around the world, and I will raise a glass to our shared experience. While I’d just as soon not have been diagnosed with breast cancer at the tender age of 40, had I not, I wouldn’t have started this little blog and “met” all of my wonderful friends in the blog-o-sphere. While I still fervently maintain that cancer is not a gift, it does happen, and we deal with it. We curse it, we cry about it, we blog about it. We come together.
Readying myself to bid adieu to 2012, I think of the year ahead and hope it’s full of good health, dear friends, yummy food, sunny days, bottomless glasses, cherished children, and beloved pets. I wouldn’t mind getting back on the tennis court after 4 long months of rehab for my newly-repaired knee, BTW. I’m thinking of things I want to do in the New Year, tasks I want to tackle, skills I want to acquire, places I want to go. In the immortal words of Mark Twain, I’m thinking of catching the wind in my sails.
From time to time, I like to provide a public service announcement for the greater good. In other words, I learn the hard way — the expensive way — and share my lesson in hopes that some diligent reader out there in the blog-o-sphere heeds my words and avoids the painful/stressful/costly conundrums in which I tend to find myself.
Today’s PSA does not concern courteous driving (although perhaps it should, based on the overwhelming number of idiot drivers I’m surrounded by every time I venture out of my house). Today’s PSA will not address healthy living or how to fortify your liver for maximum alcohol consumption. Today’s PSA won’t even mention Pinktober, pinkwashing, or how misguided The Susan G Komen for the Cure organization has become. Today’s PSA doesn’t have anything to do with our little piggie (pity that, as she is infinitely entertaining).
I recently had a surgery that, lo and behold, had absolutely nothing to do with breast cancer or breast reconstruction or breast reconstruction revision. How refreshing! I did my due diligence in researching a specialist who was the right guy for the job. I asked before I even made the appointment if he accepted my insurance. I provided all the nitty-gritty details insurance details before I saw the doc (ID number, group number, 800 number for claims). The benefits coordinator at the surgeon’s office reviewed everything on her checklist and assured me that we were good to go.
I saw the doc, he confirmed that the surgery was medically necessary and with just cause, and we scheduled a date. I paid my co-pay for the office visit and filled out all the paperwork, including multiple recitations of the insurance company details. I paid for my portion of the surgery well in advance. I followed all the rules (so I thought), and like a veteran soldier readying for battle, I eschewed any aspirin or blood-thinning products that can promote bleeding during surgery; I drank plenty of water the day before surgery to aid the anesthesiologist in finding a good, plump vein; I ate a healthy meal that would hopefully see me through being NPO the night before surgery; I washed the area to be sliced & diced with Hibiclens in my paranoid ritual of warding away any bacteria that might host a party in my surgerized body; I procured prescriptions in advance for the 2 antibiotics that are forever a part of my arsenal since that pesky post-mastectomy infection; I showed up before the crack of dawn on surgery day with an empty stomach and a powerful ache for my usual cup of coffee. I know the drill; been there, done that, multiple times. I got this.
Surgery was uneventful, recovery was long for my impatient self, but there were no complications.
Until I got a bill from the surgery center for more than $20,000.
20,000 clams for a surgery that was on the up-and-up and had been cleared for take-off well in advance.
After suffering a minor heart attack, I called the surgery center and was told to take it up with my insurance company. I called my insurance company and was told to talk to the doctor’s office. I called the doctor’s office and was told to retrace my steps and start over with the surgery center. Egads.
After spinning my wheels and listening to untold atrocious Muzak songs while on hold for what seemed like forever, I remembered that my insurance company provides a patient advocate service. I’d used this service with my previous insurance company and was forever grateful for my advocate, a former RN, who checked in on me post-mastectomy and throughout the course of the year-long infection battle. She intervened when the insurance company said it didn’t want to pay for the $5,000 Oncotype test, which dissects my particular cancer to determine the best way to treat it and determine how likely it is to recur. She helped me navigate the pages upon pages of medical bills that weighed down my mailbox in the early stage of my cancer “journey.” She was very helpful.
The new insurance company could take a lesson from her. Their patient “advocate” department sucks. I can barely stand to use the word advocate in relation to them (hence the quotation marks).
The first “advocate” I dealt with on this issue did some research and determined that the surgery center my in-network doctor used is out-of-network. So my surgeon is in-network but the surgery center is not.
Oh, and by the way, it’s my responsibility to check to be sure the surgery center is in-network.
Again I say Huh??
After all the checking and double-checking and verifying and pre-qualifying and certifying, I’m supposed to ask about the surgery center? How in the world would I even know to ask about this? What fresh hell is this?
Oh, yes indeedy, the “advocate” told me, I should have checked on that. And I should have known to check on that by reading the Standard Plan Description, a bazillion-page online document that details the ins and outs of my coverage.
While I’m grateful for the coverage I do have, I’m pretty sure my insurance company hates people like me who ring up millions of dollars in expenses for a disease they did nothing to cause and for which they actively tried to prevent. I imagine my file has a big red X on it to denote all the trouble I’ve caused and money the company has had to spend on my behalf. I’m guessing that when I call the insurance company with a question, the phone has a special ring, sorta like the Bat-phone, to alert the poor sap who answers it that I’m a raucous troublemaker who is bleeding their employer dry.
I get it. I’m not the ideal customer. But expecting me to verify that the surgery center is in-network is absurd. I don’t care what the bazillion-page online document says. If the doc is in-network and no one raises a red flag about the surgery center, then I assume I’m all clear.
A $20K bill and an instant heart attack are rather the antithesis of all clear.
And that, dear readers, is why I’m here today — to lead by example, to inform by the hard lessons learned. The word to the wise, learned expo-facto, is this: even if your doc is in-network, the surgery center may not be. Even if the doctor’s office staff have dotted every i and crossed every t, it may not be enough. Your insurance company my turn on you like a hungry dog on an alley chicken-bone and try to chew you up and spit you out. Consider yourself forewarned.