I 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.
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.
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.