Does It Ever End?
Posted: December 5, 2016 Filed under: breast cancer, cancer fatigue, kids | Tags: biology, breast cancer, breast cancer and young women, cancer, cancer battle, cancer diagnosis, cancer fatigue, cancer journey, cancer recurrence, cancer research, cancer sucks, family, PTSD, real world, schoolproject 7 CommentsOver the weekend, my favorite girl asked me to help her with a project for her biology class. She’s a freshman in high school now. This is what she looked like at age 8 when I was diagnosed with cancer. I took this photo the day before my bilateral mastectomy. 
This is my favorite girl today. 
I know, right??? How does that happen???
Anyhoo, back to the story: my favorite girl is doing a project for her biology class on a disease or disorder that has a chromosomal component. She chose breast cancer.
She needed the basic info of my cancer: stage, treatment, etc., as well as ancillary materials (photos and such) that tell “the story” of her subject’s experience with said disease or disorder. I pulled out my bulging “cancer catch-all” — my binder that holds all my paperwork, like pathology reports. That was easy because it’s all facts: this scan was conducted on this date and found this. Then she asked for the not-so-easy part: details on how my cancer affected me. While there are indeed facts involved with that part too, something else is involved as well, which is what makes it, for me, the not-so-easy part.
Feelings. The dreaded feels.
I don’t like feeling the feels associated with my cancer experience. (I refuse to refer to it as my cancer “journey” because to me that word implies an end point. With cancer, there doesn’t seem to be an end point. I don’t like it, so I’m not gonna use that word.)
Six years out, I don’t think about my cancer experience nearly as much as I used to (hence the loooooooong periods of radio silence from this blog). As with most calamities, time does smooth out the rough edges. But with my favorite girl asking me for all the gory details, that dark period of my life surrounded me, again.
When, exactly, do we “get over” this? At what point does the calamity of cancer lose its potent punch? I’d like an ETA on the return of peace and tranquility. Can someone please tell me when to expect an easing from the powers of the cancer calamity? Because I need to know that at some point, cancer will no longer upend my day like a sucker punch and leave me reeling, wondering why I feel as I’ve been run over by a truck.
That will happen, right?
Even though my cancer experience is no longer the petulant toddler whining for a pack of Skittles in the grocery-store checkout area, apparently that cancer still packs quite a punch. The simple act of flipping through my medical binder to locate information for my girl’s project sent me on a one-way trip through bad memories and scary places. I see myself from a distance, as if I’m watching myself on a screen. In the blink of an eye, I’m no longer a survivor whose scars are a badge of courage. Instead, I’m instantly transported back to that time. Those days. That period.
I hate that cancer has the ability to do this. I hate that cancer still controls me. Like a bad habit or a selfish lover, my cancer has a hold on me. Other people’s cancers have that power over me, too. Like my sweet mama’s cancer. That rat bastard smiles and licks its lips, knowing it is the puppet master and I am the puppet.
I should know better than to expect to be “done” with cancer. After all, I’ve been thinking about it and blogging about it for years. As I wrote early in 2011:
Another things I’ve learned on my “cancer journey” is that someone keeps moving the finish line. I’ve only been at this for 10 months, yet have seen my finish line recede, sidewind, and fade into the distance. It starts even before diagnosis, with the testing that’s done to determine if we do indeed have a problem. Get through those tests, which in my case were a mammogram, an ultrasound or two, and a couple of biopsies. Then there’s the actual diagnosis, and getting through that becomes an emotional obstacle course. Following the diagnosis are lots of research, soul-searching, and decisions. But even when those are through, the real work is only just beginning. After the big decisions come still more testing (MRI, CT scan, PET scan, blood work, another biopsy), and that’s just to get to the point of having surgery. Get through surgery, then through recovery, and just when I think I may be getting “there” I realize that even after recovery, I gotta learn about re-living, which is kinda different when “normal” has flown the coop and there’s a new status quo involved. You might think that finding the new normal would be the end, but guess what? now there’s the maintenance and screening. If you’re the kind of person who makes a list and takes the necessary steps to reach the conclusion, you’re screwed, because there is no end. I can’t even see the goalposts anymore.
I should know damn good and well that there is no end. So why do I keep looking for it?
Angelina’s Diary of a Surgery
Posted: March 24, 2015 Filed under: breast cancer | Tags: Angelina Jolie, Angelina Jolie PItt, BRCA, BRCA1, celebrities with cancer, losing a parent to cancer, prophylactic mastectomy 12 CommentsI just read Angelina Jolie Pitt’s op-ed in The New York Times about her second preventative surgery: to remove her fallopian tubes and ovaries. Just as she did with her prophylactic bilateral mastectomy two years ago, Jolie Pitt writes articulately and openly about her laparoscopic bilateral salpingo-oophorectomy, using imagery and opinions that those of us who have walked in her shoes immediately understand.
She writes, “The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.”
So much clarity. Amidst untold chaos and unimaginable confusion, there is clarity.
She recounts her consultation with the GYN surgeon, who had also treated her mother: “I last saw her [the surgeon] the day my mother passed away, and she teared up when she saw me: ‘You look just like her.’ I broke down. But we smiled at each other and agreed we were there to deal with any problem, so ‘let’s get on with it.’”
I had a similar encounter with someone who cared for my own sweet mama during her cancer treatment. The woman who was my mom’s radiation tech is now a nurse in my orthopedist’s office. I knew as soon as I saw her face that she was the kind practitioner who blasted pointed radiation into my mom’s beleaguered body five days a week for weeks on end. When I encountered her in the orthopedist’s office, I was thrown for a moment because she was out of context. But before long we realized who each other was, and she said the same thing to me that Jolie Pitt’s mom’s surgeon said to her: “You look just like her.”
Stupid fucking cancer.
When Jolie Pitt wrote about her mastectomy in May 2013 she cast the spotlight on the issue of femininity being defined by body parts. After her mastectomy she wrote: “I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.” With her latest surgery, Jolie Pitt casts the spotlight on another jarring and difficult result: forced menopause.
Becoming menopausal decades before its natural occurrence is unpleasant, to say the least. The physical and emotional ramifications of forced menopause suck. Really suck. There is no easing into the myriad effects, which can include hot flashes, night sweats, increased sweating, sleep disturbances, mood swings, urinary tract infections, sexual disfunction, memory loss, difficulty concentrating, back pain, joint stiffness, and fatigue. As if that’s not enough, throw in the accelerated aging: loss of elasticity in skin, lack of collagen, hair loss, brittle nails, diminished muscle tone, slower metabolism, and weight gain. Suck. At a time when many women are claiming the best version of themselves (“40 is the new 20!” “I’ve finally come into my own!” et al), early menopause creates instant grannies. Suck. If anyone can shed light on the ugly truths of forced menopause, my money is on Angelina. Yes, she has unlimited financial means and resources unavailable to the average cancerchick, but she also has a platform for educating the masses and she’s gonna use it. Hooray!
At the time of this publishing, there were 321 comments on her story; by the end of the day that number will have climbed. The handful of comments that I scanned were positive, but there are some who chastise her for her choices. I’m always amazed at how ugly people can be with the anonymity that our online world provides. How nice it would be if those cowardly, overly opinionated haters could really digest Jolie Pitt’s reasoning and respect her choice. How nice it would be if they would re-read the last sentence in this segment of her latest essay:
“I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this. A positive BRCA test does not mean a leap to surgery. I have spoken to many doctors, surgeons and naturopaths. There are other options. There is more than one way to deal with any health issue. The most important thing is to learn about the options and choose what is right for you personally.”
Choose what is right for you personally.
What works for you may not be the same thing that works for me, or for your neighbor or your cousin or the woman who works at your favorite Hallmark store. Cancer, like any disease, is an immensely personal issue, and any and all decisions resulting from a diagnosis should be personal.
Mary Claire King
Posted: February 12, 2015 Filed under: breast cancer | Tags: BRCA, BRCA1, genetic marker testing, Mary Claire King, Myriad Genetics, podcasts, the breast cancer gene, The Moth 8 CommentsTwo 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
The not-so-lazy guy exploring the bayou behind our house last year
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.
grainy, I know; someone was tugging on the leash as I snapped the pic!
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.”
Wow.
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.
photo credit: Alan Betson, Irish Times
Listen to Mary Claire King’s story on The Moth. It’s a good one.
It’s not quite like that
Posted: September 9, 2014 Filed under: breast cancer | Tags: Amy Robach, breast implants after cancer, breast reconstruction, DIEP, DIEP breast reconstruction, DIEP flap, fake boobs, foobs, Guiliana Rancic, Joanna Montgomery, the Big Dig 2 CommentsJoanna 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.”
The wrong approach?
Posted: August 17, 2014 Filed under: breast cancer, Surgery | Tags: breast cancer in young women, cancer of the nipple, CPM, gut instinct, infectious disease, JP drains, micobacterium fortuitum, Paget Disease, post-mastectomy infection, prophylactic mastectomy 7 CommentsIn 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).
We are the ones who follow our gut and don’t look back. Is that the wrong approach? Not for me. 
All quiet on the southern front
Posted: May 14, 2014 Filed under: breast cancer | Tags: Action expresses priorities, breast cancer recurrence, cancerversary, Gandhi quotes, life after breast cancer, micrometastesis, micromets, Twelve Years a Slave 7 CommentsThere’s no one reason for my blogging hiatus. Once we got settled into the new house, I could have resumed blogging. I thought about it many times, and even bookmarked several articles as good potential blog fodder. Fodder or no, my heart has not been in it. I’m a believer in this statement by Gandhi:
google images
If something is truly important, that’s what we do. That which is most important is what we make happen. So as much as I have thought about blogging, I haven’t made it happen. A recent conversation with a dear friend helped me realize that I miss blogging, and that it provides a necessary outlet for thoughts, fears, and ideas. And venting.
A few weeks ago, I realized that the anniversary of my cancer diagnosis was approaching. Yesterday was the fourth anniversary of my bilateral mastectomy.
mastectomy day — hooray!
Four years a survivor. Somehow that doesn’t have quite the emotional “oomph” as Twelve Years a Slave, yet we mark the events in our lives — both positive and negative — in years, and we celebrate or commemorate anniversaries.
I’m not sure how I feel about another year of survivorship. It’s a prickly issue, and one in which the face of a very public disease gives way to a very personal struggle. The obvious-seeming emotion about surviving cancer would be relief, to be glad it’s gone. But here’s the prickly part: it’s never really gone. Instead, it’s the monkey on my back that manifests in every twinge or symptom that might possibly signal a recurrence; a random bone ache is surely a sign of mets. It’s the generalized anxiety about if or when recurrence will strike. It’s the niggling thoughts in the dark of night about the presence of micromets in the area formerly known as my breasts. It’s the questioning of every decision made along this “cancer journey.” Did I do enough? How much is enough?
Does it ever get easier, this uneasy survivorhood? Perhaps. Like grief, it becomes less raw, less all-consuming. But it doesn’t go away. As I’ve written about before, it’s never over. While some like to celebrate the anniversaries of survivorhood, I’m leaning more toward ignoring them, to not calling attention to them in hopes of not jinxing myself. It’s a personal choice, with no right or wrong status. I notice the dates as they approach, but instead of stopping to acknowledge them and the myriad emotions they evoke, I keep my eyes on the horizon.
The TMI saga continues
Posted: January 13, 2014 Filed under: breast cancer | Tags: Bill Keller, blogging about cancer, breast cancer blogs, Emma Keller, judging cancer patients, Lisa B Adams, mothers of young children with breast cancer, New York Times op-ed, Sloan-Kettering Caring Canines, tweeting about cancer, twitter, young women with breast cancer 20 CommentsAfter 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.
Twinnies
Posted: November 19, 2013 Filed under: breast cancer | Tags: autologous fat transfer, breast cancer in young women, DIEP, DIEP flap reconstruction, identical twins, identical twins with breast cancer, Kelly McCarthy, Kristen Maurer, the Big Dig 4 CommentsAs if one case of breast cancer isn’t enough, how about two cases?
dailymail.co.uk
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.”
But did it really save her life?
Posted: November 14, 2013 Filed under: breast cancer | Tags: 2012 mammogram study, Amy Robach, do mammograms save lives?, Dr Susan Love, GMA Goes Pink, Good Morning America, New England Journal of Medicine, on-air mammogram 11 CommentsAmy Robach, an anchor on Good Morning America, underwent a bilateral mastectomy today because she was diagnosed with breast cancer following a live, on-air mammogram last month. She credits that mammogram with saving her life.
Robach is a 40-year-old mother who lives an active, healthy lifestyle and has no family history of breast cancer. Her diagnosis came as a tremendous shock because she had no symptoms or reason to think she was anything other than the picture of health. She wants to fight her cancer as aggressively as possible. I know exactly how she feels. I too was 40 years old when I was diagnosed. My kids were 8 and 10. I lead an active, healthy lifestyle. I opted for a “scorched Earth” attack on my cancer.
I’m in no way challenging her decisions or judging her motivations, because hers are the same mine were. At the time I was diagnosed, my one and only goal was to rid my body of the cancer so that I could spare my kids the horror of watching their mom die before her time. I was willing to take the most aggressive road in exchange for a cancer-free life.
What I am challenging, however, is the rampant, panacea-esque assumption that routine mammograms save lives. Everyone loves a “feel good” story, and no cause stirs up quite as much “feel good” stuff as breast cancer. Wrapped in a pink ribbon, glitzed and glammed to high heaven and jacked-up as feminine and pretty, breast cancer is the cancer. All the cool celebrities are getting it, and everyone loves to hear that more “awareness” and more screenings mean more lives saved. We hear much of celebs being brave in the face of a breast cancer diagnosis, yet we learn little of whether their cancer warranted the treatment they chose.
While the “mammograms save lives” story makes people feel good and likely sells a whole lot of airtime, it’s not exactly true. But we want to believe it, despite scientific evidence telling us otherwise. While the evidence is sound, how many women opt out of a mammogram because they know that the routine screening has little to no impact on mortality? Conversely, how many women are diagnosed with relatively harmless breast cancer yet choose the most aggressive treatment? I know one such woman, for she is me. I am her. I knew my form of breast cancer was not terribly threatening, and I was provided all the stats & facts & figures and options to support that. Yet my gut instinct was to scorch that Earth.
A 2012 New England Journal of Medicine study looked into whether screening mammograms has had an impact on breast cancer mortality. After culling through 30 years of statistics, the conclusion: screening mammograms increase the cases of early-stage breast cancers that are detected, but that detection of advanced breast cancers has not changed.
Because the number of cases of advanced-stage breast cancer has not changed in 30 years of routine screenings, researchers concluded that mammograms are not successful in saving lives. Studies in the United Kingdom, the Netherlands, Italy, Switzerland, Norway, and Australia have come to the same conclusion. One thing that has changed during the last 3 decades: increased diagnoses and surgeries.
This Nautilus article echoes the 2012 NEJM study. About Robach’s on-air mammo, author Amos Zeeburg says:
“The [Good Morning America] episode was presented as a triumph of medical science, an even more compelling push to get tested: Robach had no idea she was in grave danger, the screen had saved her life, and it might do the same for any woman watching. [Robach said] ‘If I got the mammogram on air, and if it saved one life, then it’s all worth it. It never occurred to me that life would be mine.’ It’s an inspiring conclusion, and it certainly makes for great TV, but the show’s lesson about screening mammograms is highly misleading. In a world of limited medical resources, it may even be harmful.”
So what’s a woman to do? Our doctors recommend a baseline mammogram annually starting at age 40. Celebs implore us to get our mammograms. Every October there’s enough “awareness” to scare the bejeezus out of a normally rational woman. Every time we turn around, someone else we know — in real life or from TV — is diagnosed with breast cancer, and everyone believes that early detection saves lives.
Nautilus author Zeeburg says: “The big problem with screening is that it tends to find cancers that are not very dangerous—’indolent’ ones that don’t grow quickly, will never metastasize to other organs, and might even go away on their own—while missing the truly deadly ones, which grow and spread too fast to get caught in any case. ”
Noted breast cancer docs agree.
Dr Susan Love said, “I really don’t think we should be routinely screening women under 50. There’s no data showing it works.”
And for women younger than 50 who follow the rules and get a yearly mammogram, Dr Love says “It’s radiation without much benefit.” She notes that most European countries recommend screening every other year, and their breast cancer mortality rates are no higher than ours.
Dr Silvia Formenti, head of radiation oncology at NYU’s Langone Medical Center said the emphasis on mammograms for everyone might have given the public the impression that screening could prevent cancer. “It’s a giant misconception,” she said. Furthermore, she’s not a fan of overtreating indolent cancers but worries about the diagnoses “turn them into cancer patients and erodes their peace of mind forever. We take away the innocence of being healthy and not having to worry about cancer. The psychological cost of becoming a cancer patient is underrated.”
Amen, sister.
But all these dissenting voices don’t clear up the question women face regarding mammograms. After my OB-GYN felt a teeny-tiny lump, she sent me for a diagnostic mammogram, which led to a couple of biopsies and then diagnosis. My cancer was determined to be indolent, yet I still chose the scorched-Earth option. Maybe I wouldn’t have reacted as surely and as strongly had I not watched my mom die of cancer and if I didn’t feel a gigantic, never-ending void in my life after she died. But how much does the constant barrage we receive about early detection saving lives contribute to such sure and strong decisions about our course of treatment? I went into my bilateral mastectomy eyes wide open and perhaps too well-informed about what I was getting myself into (absent the post-mastectomy infection that ended up being waaaaaay more perilous than the actual cancer). I went in feeling 100 percent certain about my decision. Yet now I wonder: what would have been the risk of just watching that teeny-tiny lump and seeing what, if anything, changed from year to year? How risky is it to live with a teeny-tiny lump of indolent breast cancer for years?
How many of us would be willing to play those odds if we weren’t barraged with messages about mammograms saving lives?
I don’t know the answer. I can’t say if I would have changed anything about my scorched-Earth policy; hindsight is perfect, after all. But I do wonder how much the “early detection” and “mammograms save lives” rhetoric contributes to the decisions we do make when facing down the pink beast.
I think Zeeburg says it best: “The surprising inefficiency of mammograms doesn’t mean they need to end, but that they should be reasonably evaluated, not treated as our divine shield against cancer, administered to everyone with breasts, and paired unquestioningly with the most aggressive treatments available.”
The Pink Underbelly 