Mary Claire KingPosted: 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 Comments
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.
World Cancer Day & Stuart ScottPosted: February 4, 2015 Filed under: Uncategorized | Tags: Every Day I Fight by Stuart Scott, Jimmy V, Jimmy V Award for Perseverance, mycobacterium fortuitum, nosocomial infection, post-mastectomy infection, Stuart Scott, World Cancer Day 2 Comments
Today is World Cancer Day, and rather than rehashing my own cancer “journey” I’m thinking about Stuart Scott.
A longtime ESPN anchor, Scott was a familiar presence in my house. His wordsmithing appealed to me, as did his irreverancy. In a world populated by former jocks and professional windbags, Scott contributed a cool combination of intellectual breadth and liveliness. Scott’s colleague Dan Patrick once said about Scott that “he didn’t just push the envelope, he bulldozed the envelope.” I’m a fan of bulldozers.
Scott was diagnosed with appendix cancer in 2007. Yes, you read that right: appendix cancer. Weird and rare, there are an estimated 1,000 cases of appendix cancer in the United States annually, compared to nearly 300,000 cases of breast cancer every year in this country. Perhaps this is another reason I relate to Stuart Scott: between his appendix cancer and my post-mastectomy mycobacterium infection, we both faced the question of “who in the world contracts that??”
Stuart Scott wrote a book about his cancer “journey,” which explains his gladiator approach to confronting his disease. The cancer community is divided on the “battle” aspect of the cancer fight — some people love the idea of a cancer warrior while others are uncomfortable with the war metaphors — but one thing I know for sure: the cancer experience is a fiercely personal one, and no one has the right to tell another how to do it or which analogies to use.
I read an excerpt of Scott’s book and am hungry for more. He was a gym rat, like me, and he leaned heavily upon his workouts during treatment, both for physical strength and for mental health:
“I can’t tell you how important it felt to go from the chemo infusion center to the gym. There were patients at the infusion center who were gaunt and too weak to walk. I wanted to hug them. I wanted to work out for them. It took about fifteen minutes to get to the gym from the infusion center, but I felt like I was traveling a great distance: from the land of the sick to the land of the recovering. I’d work out three or four times a week, but the most important workout was the one right after chemo. It was like I was proving a point: While you kick my butt, cancer, I’m gonna kick yours.”
In thinking about the name of one of the drugs in his chemo cocktail, Scott realized “The medical name of the medicine is fluorouracil, but they call it 5-FU. That’s what it said, right there: 5-FU. All right, I thought. A sign. FU, cancer.”
FU cancer. Indeed.
Scott continues: “My return to the gym felt kind of spiritual. I wasn’t really supposed to run since I was still connected to the port that was giving me my medicine. I looked down, and my eye caught the logo of the manufacturer of the machine I was on: LifeStyle. That word jumped out at me: Life. I thought back to the first thought I had when [diagnosed]: I’m going to die. But I was still here. And here I was, not forty-five minutes out of chemo, and I was in the gym, doing what I do. I started to run. What could be the harm? The disease wasn’t in control. I was.”
That sense of control is of epic importance in the cancer “journey.”
Scott explains it like this: “Mentally, I needed to be in that gym. I’d talk smack to cancer like Ali talked to his opponents. A third set of push-ups? Take that, cancer. Twenty full-out sprint pass patterns? Cancer, you ever run up against this? Some kicks and punches into the middle of the heavy bag after the elliptical? I got yer cancer right here! I needed to do that, not just to show my girls I was fighting for them, but also to show myself I had some control over the situation. ‘Cause cancer wants to take control from you. You’ve got to very purposefully stand your ground. That’s what going to the gym is to me. I decide, cancer.”
A few weeks ago I came across the late ESPN sportscaster’s speech about his cancer “journey” at the ESPY awards last summer. That speech is powerful. Here’s the link so you can check it out.
Scott was awarded the Jimmy V Award at last year’s ESPYs and joins an acclaimed list of courageous and inspirational people from various corners of the sports world. Perhaps his career as an on-camera personality gave him the extra flair that made him such an engaging speaker. Maybe that was just his personality. Either way, his speech is compelling.
The take-away message, for me, lie in these words from that speech:
“When you die, that does not mean that you lost to cancer. You beat cancer by how you live, why you live and in the manner in which you live.”
Stuart Scott taught me a huge and valuable lesson. He did die, but he did not lose. How he lived proves that. Today, on World Cancer Day, I honor Stuart Scott. While at the gym, I will think of his no-mercy approach. I will remember all the days in which I was that patient too weak to walk, and I will silently thank him for all the times he worked out in my stead. For all the times he went straight from chemo to the gym and said FU, cancer.