Two new habits in my life brought a crazy-good, goosebump-inducing moment into my life last night, which illustrates the lovely possibility of finding something awesome in an otherwise everyday moment.
My two new habits: walking Pedey in the pre-sunset hour while listening to podcasts. Credit for the first habit goes to Pedey himself, who in his previous life in our former house was the laziest creature on Earth but who has developed a new leash on life (heh heh) since residing in our new abode. Credit for the second habit goes to my medical sherpa and dear friend Amy, who turned me on to the wonderful world of podcasts.
So last night, I was walking Pedey
listening to a podcast, and taking in the beauty of the evening. While much of the country is covered in snow, here in the Great State of Texas, it was a balmy 70-something-degree evening. This is what it looked like when Pedey and I headed out for our walk,
and this is what it looked like when we were nearing home.
Along our walk I tried to ignore the ever-present pain in my bum knee and the increasing discomfort in my hands from this wretched carpal tunnel syndrome. Instead, I forced myself to be present and to notice things like the shapes of the clouds in the darkening sky and the colors on display.
I smiled to myself because I didn’t have to rush home to make dinner (I’d cooked a double batch of chicken noodle soup for a friend whose entire family was felled by the flu). Instead, Pedey and I could linger while taking in the view.
The podcast was from The Moth, which for the uninitiated, features real people telling real stories from their lives, live in front of an audience without notes. These are regular people telling personal stories; you can hear the nervousness and emotion in their voices. Each Moth podcast typically contains several stories with a common theme. The one I listened to last night had four stories: a doctor faced with her own father’s memory loss; a man recounting his attempts to plan his Bar Mitzvah as a teenager; an archeologist who had a very personal run-in with the effects of climate change; and a doctor whose life is upended as she is on the cusp of a breakthrough in cancer research.
I had listened to the first three stories earlier in the day, while making the soup, and so had the last story to savor as I wrapped up my day with the twilight walk with Pedey. The narrator of the last story, Mary Claire King, told a compelling story that began on April Fool’s Day in 1981 when her husband dropped the bomb that he was leaving her to run away with one of his graduate students. The Kings had a 5-year-old daughter at the time, and the very next day Mary Claire was awarded tenure at Berkeley. Reeling from the announcement from her husband and processing the tenure award, she arrived home to find that their home had been burglarized. Her father had recently died, and her mother had just been diagnosed with epilepsy. Add to that chaos that she was due to travel from California to Washington, D.C., to present a grant proposal to the NIH for her research. Yowza. That’s what’s known as a class-A cluster.
A snafu in Mary Claire’s childcare for that trip to D.C. nearly brought her pursuit of the NIH grant to a halt, but thanks to some over-and-beyond help from her mentor and intervention by a kind — and über famous — stranger at the airport, she was able to make the trip, present the proposal and win the grant. I was still agog at her recounting of the airport encounter when she finished her story by saying “that was the beginning of the the grant that has become the story of inherited breast cancer and the beginning of the project that led to BRCA1.”
Mary Claire King is the person who discovered “the breast-cancer gene.” She pioneered the genetic research that has completely changed the way breast cancer is diagnosed and treated. She has changed the lives of countless women, including the one walking her dog on a beautiful February night in the Great State of Texas. Crazy. And crazier still is the fact that she very nearly did not get on that plane to present that grant that would lead to one of the biggest medical discoveries of this lifetime.
I’m soooooooo glad she did get on that plane.
I have personally benefitted from Mary Claire King’s work, and there she was, in my earbuds, telling an incredibly compelling story, the majority of which has little to do with her groundbreaking research and her far-reaching progress in our frustratingly slow war on cancer. I don’t carry the gene that predisposes me to breast and ovarian cancer. Being free of the genetic predisposition doesn’t really change anything about my cancer “journey.” Despite not having the genetic predisposition, I nonetheless have had a bilateral mastectomy and a complete hysterectomy. I find some peace in knowing that my cancer wasn’t caused by funky goings-on in the 17th chromosome, and that I’m not passing that funky gene on to my daughter (and son). I don’t know what caused my cancer, but I’m fortunate to have had the resources to take the BRCA1 test to find out whether my 17th chromosome had funky goings-on that would indicate causality. I like knowing, even if it didn’t change the outcome or my choices in treatment.
Decades before breast cancer entered my world, King was hard at work to figure out how it worked and how to stop it. I love her. From 1974 to 1990, King worked to find a connection between genes and breast cancer. When she began this quest, the prevailing scientific explanation for cancer was a virus; no one thought it could be genetic. But King thought otherwise. She used her previous theory from her Ph.D. , which showed that humans and chimpanzees are 99 percent identical genetically, to pursue a genetic component to cancer. She believed that examiningt the DNA of women whose relatives had breast cancer could lead to a genetic link, and in the pre-internet era, she gathered information by hand and by word-of-mouth. She overcame obstacles from lack of funding to primitive research tools to derision as a female scientist. She prevailed. She rocks.
Those of us unfortunate souls whose lives have collided with a diagnosis of breast cancer or ovarian cancer know about the BRCA component. While a low percentage of breast cancer is genetic, the discovery of the BRCA component affects all of us in the Pink Ribbon Club. My cancer was not inherited, but I’m certainly glad I had the opportunity to learn that. Furthermore, the possibility of future breakthroughs in cancer research are promising. The solution to the cancer epidemic lies in people like Mary Claire King, long may they prevail.
Listen to Mary Claire King’s story on The Moth. It’s a good one.
Joanna Montgomery gets it. She really gets it. It’s a common misconception, yet something that those of us who’ve faced it head-on know. We know because we learn the hard way. Despite the Pollyanna snow job by pink-ribbon celebs like Giuliana Rancic and Amy Robach, having a mastectomy does not mean you get new boobs. Not even close. In this article, Montgomery explains it, succinctly and completely.
“There’s a huge misconception among the general populous about what it means to have one’s breasts removed and replaced with artificial ones (if they are replaced at all). When speaking about my upcoming surgery, I had many well-meaning people say things like, ‘Well at least you get new boobs!’ and, ‘Your husband must be so excited… has he picked ‘em out yet?’ Yeah, well, it’s not quite like that. Not at all, in fact.”
Yeah, it’s not at all like that.
Here’s how it really is, as Montgomery so eloquently explains: “It seems that those not in the know tend to equate post-mastectomy reconstructed breasts with augmented breasts or ‘boob jobs.’ Nothing could be further from the truth. You see, augmented breasts are actually real live breasts with nipples and healthy breast tissue behind which silicone or saline implants have been placed, either under or above the muscle, thereby pushing them up and out. If augmented breasts didn’t look damn good, breast augmentation surgeries would not be so, ahem, popular. So even though augmented boobs are often called ‘fake boobs,’ they’re really not. I, on the other hand, do have fake boobs (or ‘foobs,’ as I have become prone to calling them).”
I have foobs, too. Not implants, but foobs made from my own flesh and tissue carved from my belly via a 17-inch-long incision.
Like Montgomery, I am thankful to have had skilled surgeons at the helm of my reconstruction, and I’m thankful to have good health insurance (although the out-of-pocket expenses are still hefty). Sometimes honesty about our foobs is interpreted as being ungrateful. Montgomery says, “those of us who either opted to have mastectomies as a preventative measure, or had mastectomies as a life-saving measure, aren’t excited about our ‘new boobs.’ In truth, we’ll never be the same. We see ourselves differently now when we look in the mirror, because we are different, inside as well as outside.”
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).
After blogging about Emma Keller’s article in The Guardian about Lisa Adams (read my thoughts here), I felt better. Reading the comments that came in response to that blog made me feel better still. But now I feel bad again. And mad. Really mad. As if Keller’s article wasn’t bad enough/mean enough/hateful enough/out-of-line enough, now her husband has gotten in on the hating.
That’s right, her husband.
He too is a writer, for The New York Times, no less. He joined the fray, I can only assume in an attempt to defend his wife, for whom the fallout has not been kind. His article misses the mark as much as his wife’s article did, IMHO, and he makes a really lame comparison as the basis for his point.
He compares the way Lisa has handled and is handling her cancer to the way his father-in-law succumbed to his cancer. Lisa is in her 40s with three boys to raise. Bill Keller’s father-in-law was a few weeks shy of 80. Can we really compare the situation of a still-young mother to that of a man nearly 40 years her senior, who also faced kidney disease, diabetes, and dementia? I think not.
Mr Keller chooses to break the same rule his wife broke; the one rule that should remain forever unbroken in talking about a cancer patient and how s/he chooses to handle that cancer: don’t judge.
Mr Keller judges, right alongside his wife.
For example, he writes that “every cancer need not be Verdun, a war of attrition waged regardless of the cost or the casualties.”
Like his wife, he wonders aloud, in his column, about the cost of Lisa’s treatment. Which is none. of. anyone’s. business. He even calls into question her partaking of Sloan-Kettering’s Caring Canines program, in which “patients get a playful cuddle iwth visiting dogs.” He whines about neither Lisa nor Sloan-Kettering not telling him how much “all this costs and whether it is covered by insurance.”
Really?? He begrudges a critically-ill woman’s choice to pet a dog and is pissy because he’s not privy to how much it’s costing her?
He characterizes his father-in-law’s choice to stop pursuing life-extending measures as “humane and honorable” and calm and enviable, while Lisa’s is the opposite, in which she is “constantly engaged in battlefield strategy with her medical team.”
Again, this is none.of. anyone’s.business.
Perhaps the worst part of Mr Keller’s piece is this: “Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly seems to peg patients like my father-in-law as failures.”
If Lisa Adams wants to be the standard-bearer for one-eyed-one-horned-flying-purple-people-eaters, it is none of Mr Keller’s damn business. If she wants to wave a flag, Braveheart-style, it is none of his concern. If she wants to depend on hope to endure the hell-on-Earth she’s currently living with, he is the last person who should be flapping his gums about it. If she considers herself a success for doing what she felt was best for her and her family in her particular situation, why would any of us take umbrage? Shame on both Kellers.
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.”