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.
House arrestPosted: March 24, 2011 Filed under: breast cancer | Tags: blog, breast cancer, cancer battle, City Island, genetic marker testing, JP drains, Kathleen Sebelius, online gambling, online gaming, plastic surgery, post-mastectomy, reconstruction, recovery 9 Comments
Haven’t been feeling very bloggy today, which is unusual for me as I’m rarely at a loss for words. The norm is for me to wake up with a blog topic in mind, and I generally have several other topics infiltrate my brain every day as I go about my daily business. Some are interesting, and if the planets are aligned properly, I jot down a note or enter the info in my phone for later, but sometimes I don’t slow down enough and think I’ll remember it all on my own. Ha! That seldom works out for me. Who knows what brilliant blog posts are lost in my grey matter because I was cocky enough to think I could hold that thought in my head while my brain is on overdrive, processing all the medical hoo-ha since surgery.
Of the blog topics that do survive to see the light of day, however, some make the cut, some don’t, and lately the topic du jour is dictated by the most recent medical flare-up, break-down, or blow-out. Sometimes there’s an embarrassment of riches in the complication department.
But today the blog muses weren’t speaking to me. I chalked it up to the cabin fever, ennui, and general restlessness that accompany my current house arrest. I’ve been laying low all week (and it has been a long week) for a very specific purpose: to decrease the amount of fluid exiting my body and entering the JP drains so that I can get those damned drains removed.
I’ve had a bit of a history with the drains, going back to the mastectomy, and because I’m a busy-body, my drains’ output tends to be high and they have to stay in longer. I think I had 2 drains for 5 weeks post-mastectomy; can’t remember exactly but it felt like forever, and once they were finally removed, skin was growing around one of them and had actually adhered. Yes, the removal was ugly and painful.
But that’s not why I hate the drains. I can handle the ugliness and the pain. I can handle the discomfort of a rubber tube stitched into my side. I can handle the hole in my body with said rubber tube coming out. I can handle the creepiness of not knowing exactly how far that sucker is threaded through my body. I can handle feeling like a medical freak show when I go in public with said tubes sticking out and snaking from my sides into my sling bag. I can handle the wardrobe challenges presented by needing to cover up yet accommodate and not smoosh, all at the same time. I can handle the draining of them everyday, even though what comes out is nasty and not always liquid (and that’s all I’m going to say about that).
I understand the value and purpose of JP drains. I know that if the drains weren’t sucking the fluid out, it wouldn’t magically go away but would instead pool inside my body and create a seroma. I need a seroma, or any other complication, about as much as I need a hole in the head, as my sweet mama used to say. So I make peace with the drains, even though I curse them under my breath and despise them and rue the day they entered my life. Seriously rueing the day here.
I’m not loving my house arrest. I’m not so good at the “doing nothing” phenomenon that many people seem to embrace. I don’t enjoy this “down time” and I stink at being lazy. I especially don’t enjoy forced laziness. It’s just not for me. I understand and accept it but not happily and I would kick & scream to protest but that’s not very restful.
Day One of House Arrest was easy because by the time I got home from my appointment with Dr Spiegel at the med center, it was almost time for school to be out, and the day was half over. Day Two passed uneventfully; I watched a movie but don’t even remember now what it was. By evening, I was starting to get cabin fever but managed not to bitch about it too much. Day Three of House Arrest seemed longer than Day Two, but I watched another movie that was worth mentioning, and I may even have to write a review of; if you can’t wait for that, the movie is City Island with Andy Garcia and Juliana Margulies. It’s good. Really good.
The highlight of Day Four of House Arrest was the arrival of Melanie and little Luke of the million-watt smile. Melanie is kind enough to bring me a big cup of Green Drink and to blowdry and flat-iron my hair, since I’m still not supposed to lift my arms that much. We had a great visit and there’s a lot to be said for having clean hair, but there’s something kinda sad about the highlight of the day being over by 10 a.m. Sigh.
I’ve discovered that sitting in front of the computer can be a gigantic time-suck. Who knew? I usually sit at the computer (and “sit” may be stretching it, since I tend to perch on one corner of the desk chair, all the better to jump out of it fast and move on to the next task) briefly. I’ve never been one to spend all day in front of the computer. I don’t really enjoy reading from the screen (yet I love my kindle, so way to go, kindle creators). I’m not a gamer, either, so I don’t lose myself in the online gaming world. I thought about taking up online gambling, but I like to shop too much to throw my money away, so that’s not going to happen.
I do get a lot of info from various breast cancer organizations, and I usually skim the bevy of emails in my inbox on the topic, deleting more often than fully perusing. This one caught my eye, though, both because I have time on my hands to notice it, and because it seems so insistent and urgent. This one email contains multiple links, each one clamoring for more attention than the next:
Don’t Restrict Access To Mammograms!
Help Women With Breast Cancer by Covering Their Medical Bills!
Support Breast Cancer Genetic Marker Testing!
On Sale: Pink Ribbon Water Bottle!
Stop Canceling Women’s Policies!
Fund Women’s Exams in Remote Guyana!
Also a lot of urging me to tell Secretary of Health & Human Services Kathleen Sebelius what I think and which programs she should and should not endorse.
I’m not making this up. Even in the midst of my wealth of free time, I couldn’t make this up. The email is from a group called Greater Good Network! No idea who they are or how they got ahold of me, but I do know this: they use a lot of exclamation marks. Yes! They do! A lot!
That makes me tired. The forced excitement! And the wide range of serious health issues! And the political ramifications! I’m going to have to unsubscribe from their distribution list. Reading one email made me tired. Wonder if I have time for a nap.