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.
Our newest spokesperson: Angelina Jolie
Posted: May 14, 2013 Filed under: breast cancer | Tags: Angelina Jolie, Angelina Jolie preventative mastectomy, BRAC1, BRCA, family history of breast cancer, Giuliana Rancic, Journeying Beyond Breast Cancer, The New York Times 11 CommentsThanks to my friend Marie at Journeying Beyond Breast Cancer for the heads-up on a noteworthy event in the breast cancer world: Angelina Jolie’s preventative bilateral mastectomy.
Yes, you read that right: Angelina Jolie had a preventative bilateral mastectomy. She spoke out on her choice in this New York Times piece. I’ve read it twice and know that I will return to it again and again. Not because she’s a celebrity (frankly, I don’t get our societal obsession with celebs; if anyone can find anything remotely interesting about Kim Kardashian besides her unfortunate maternity wardrobe, please drop me a line. I just don’t get it.).
But I digress.
I will likely return to Jolie’s article because she’s articulate and well-informed about this nasty beast called cancer. She’s proactive, which ladies and gentlemen is what makes or breaks your fight against this damned disease. She advocates for a person’s right to choose the medical care that’s right for them. True, she has money and resources unknown to most people, but her message still stands.
Normally when a celeb comes out with a revelation about cancer — particularly breast cancer — the world takes notice because it’s happening to a celebrity. We get all atwitter about the person rather than the disease and the many ways in which it affects them. It becomes about the celebrity instead of about the cancer. In the case of a celeb with breast cancer, I cringe along with my pink-ribbon sisters when that celeb boasts of having “caught it early” and even worse, waxes poetic about how exciting it is to get “new boobs.” (Exhibit A: Giuliana Rancic. I threw up in my mouth more than once while reading her account of her cancer experience and wonder if she really believes the crapola she shoveled.) Newsflash: “new” does not correlate to “better.”
Jolie writes of losing her mother to cancer at age 56, and how the disease stole from her own kids “the chance to know her and experience how loving and gracious she was.” I get that. My favorite girl was 3 when my mom died, and she has few real memories of her YaYa. There are plenty of stories that have been recounted to form memories, but nothing tangible. 
That, my friends, is a tragedy.
Jolie says she tried to explain to her children the disease that took “mommy’s mommy” and that they wondered if the same thing could happen to her. The scariest thing about my own diagnosis was explaining to my kids that YaYa’s cancer — which they watched her die from — was very different from my cancer.
But is it really?
Yes, the particulars are different — ovarian vs breast, stage II vs metastatic — but to a child, what’s the real difference here? It’s an amorphous, scary monster that snatches away the people they love.
Jolie says that “cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness.” The best way to combat that powerless feeling is to do something about it. Jolie underwent the BRCA analysis, which tells us if we carry a gene that makes us more likely to develop breast or ovarian cancer. Her results: an 87 percent chance of developing breast cancer, and a 50 percent chance of developing ovarian cancer.
She goes on to say, “On a personal note, 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.”
For someone in her business, and as someone who is celebrated for her body as much–if not more–than for her charity work, that’s big.
So is the empowerment Jolie speaks of: “For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.”
Make your own informed choices.
The majority of breast cancers occur in women with no family history of the disease. That’s one of the many ways this stealthy beast sneaks up on us and takes over our lives. People like Angelina Jolie are helping to change this. She says, “I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.”
Living under the shadow of cancer.
Those words will stay with me as I read and re-read her piece.
I expect Jolie to bring her considerable influence to addressing the fact that the cost of the BRCA test (upwards of $3,000) precludes many women from undergoing the test. The test is not always covered under insurance, and the insurance companies will squawk about it being unnecessary if there’s no family history of the diseases. But as Jolie says, that should not stop us from trying. Often it’s as simple as having the prescribing doctor contact the insurance company to assert the need for the test.
Jolie ends her article with this: “Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.”
The Pink Underbelly 
I hope AJ has unplugged
Posted: May 17, 2013 | Author: pinkunderbelly | Filed under: breast cancer | Tags: Angelina Jolie, bilateral mastectomy, BRCA, breast cancer in young women, cancer in young women, criticism for mastectomy, genetic risk and breast cancer, negative comments to cancer patients, New York Times op-ed piece, prophylactic mastectomy | 16 CommentsThe 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:
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.
Unbelievable.
Other comments:
“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??
Good grief.
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:
thank you, google images, for providing such lovely graphics.
sorry about the formatting; not sure what’s up with that.