Location: Washington, DC
Age: (newly minted) 54
David and I met while we were both students at Georgetown University Law Center (oh so many years ago!) so it felt like great timing to be offered a chance to return to our old stomping grounds for a trip that coincided with both of our birthdays. We are being put up at an amazingly swank hotel (the Oriental Mandarin on the waterfront – problematic name but wow to the posh room overlooking the water!), got to enjoy dinner with David’s folks (who live in Annapolis and bravely faced WDC traffic to come meet us for yummy farm to table fare at Founding Farmers restaurant) and see friends and colleagues. But it is what brought us here that is the focus of today’s post, because it really epitomizes something I have found to be true for quite a while – more good than bad has come out of my cancer journey.
When I was first diagnosed with ovarian cancer in 2011, I was a community columnist with the Charlotte Observer so I ended up chronicling my journey in the newspaper. Those columns and an Ovarian Odyssey email update that I sent out to friends and family became the genesis of my memoir about my cancer journey, But I Just Grew Out My Bangs! A Cancer Tale. My book tour led to speaking engagements with cancer support groups, including a talk I gave at the NOCC (National Ovarian Cancer Coalition) in Las Vegas in 2014 (another trip David and I enjoyed that coincided with both of our birthdays!) and that yielded many more speaking opportunities. I got to share my story at the Myriad Genetics National Sales Meeting in Orlando that summer, and the girls not only joined me on that trip but also on stage, signing a song about the importance of genetic testing.
Shortly after being diagnosed with ovarian cancer, I learned that I have the BRCA-1 genetic mutation…the one thing I have in common with Angelina Jolie! Even though I didn’t learn about that mutation until after cancer had reared its ugly head, it provided my medical team with valuable information on the source of the cancer, that, in turn, allowed them to better treat it. Studies have shown that ovarian cancer responds better to both the chemo regimen that I was on and the way it was administered (directly to the affected area through a peritoneal port in my abdomen) when the cancer stems from the BRCA-1 mutation. When you are dealing with a cancer that still has such grim statistics associated with it (I have a distinct memory of slamming my laptop shut the first time I looked it up), that gift of hope that my mutation gave me is something for which I will be forever grateful. My mutation also let me know my odds of getting other cancers (including an 87% lifetime risk of breast cancer) and the practical gift of quantifying that risk so that my insurance company was far more likely to sign off on whatever preventative measures I took (in my case, a very costly prophylactic double mastectomy). But the greatest gift my mutation gave me is the one I can pass along to my children. I took one for the team so that they can be spared the cancer hell I went through. Hannah, 22, has tested positive for the BRCA-1 mutation (Noah and Eliza have not yet been tested) and while I wish she didn’t have it, I would much rather have the mutation in common with her than my cancer.
I now crisscross the country sharing my story and the importance of genetic testing as a patient advocate for Myriad Genetics (the leading molecular diagnostic company that identified my BRCA-1 gene mutation in 2011). I also continue to channel my inner Ellen DeGeneres (always a huge compliment when people tell me I remind them of her!) in presentations to patient and survivor support groups about finding the silver linings and the moments of joy and mirth in your cancer journey. I have always enjoyed public speaking and I still pinch myself that I get to do this now, on a regular basis (David might even say on too regular a basis!). I have seen so many cool places, met so many fabulous people, and I get to bring hope to those who are in the thick of their battles and do important and life-saving advocacy to patients and medical professionals across the country. I think you will now understand why I say that more good than bad has come out of my cancer journey.
So now here I am in Washington, DC, serving on the Advisory Panel on Precision Medicine (Oncology) for ACOG, The American College of Obstetricians and Gynecologists. Meeting doctors who are devoting themselves to identifying genetic syndromes and making sure that screening tools are developed and implemented in women’s health is such a full circle experience for me. I got to lead a panel discussion today on Shared-Decision Making in the Oncology break out session. How surreal and empowering to be sharing my story and using it to potentially impact the lives of so many. As they say in the South (even though this atheist does not mean it with any religious connotations), I am blessed.
So for me, a takeaway from this trip, this incredible advocacy experience, and my overall good fortune in now getting to finally have a public speaking career, is that sometimes the positives do not immediately reveal themselves. Sitting in the infusion room getting pumped full of poison, it would have been hard to imagine how very lucky I would ultimately feel about all that the Big C has yielded in my life. So know that the dividends aren’t always immediately apparent, and that good can definitely come from bad.
Hereditary cancer genetic testing is not for everyone, but it is vital information for those who may be at risk. There are good screening tools available, including:
https://myriadmyrisk.com/riskscore/
I am so impressed with all that ACOG does to advocate for women’s health and ensure that OB/GYNs are informed and accountable.
And for those of you interested in my cancer memoir,
So very proud of you Katya. Many wonderful memories within this blog post. Muah!!