DATELINE: May 2016, REWIND January 22, 2016, Morristown Memorial Hospital
I am weary of painting a perennially rosy picture about my life, blogging, but skirting the tough issues. My readers are probably tired of my relentlessly upbeat and cheery tone, wondering if I am for real. This blog is supposed to be about the triumphs and little victories in my quest, but also about the obstacles that I face in achieving them. True, I have structured my days to enable me to train and to travel and to bag the states, but there are other things going on, things I haven’t revealed, secrets that are weighing on my mind.
Remember that surgery I blithely mentioned in my Florida post? That was a double mastectomy. Nobody wants to have this surgery, but among those who do have it, I consider myself lucky. I had it on my terms, while healthy.
Since early 2010, I’ve known that I carry a gene mutation called BRCA1. It is similar to Angelina Jolie’s mutation. This defect in my genetic code predisposes me to breast and ovarian cancer at ten or more times the rate of the general population. That means that my risk of breast cancer before age 70 is something like 70 percent, and my risk of ovarian cancer, among the most sneaky and deadly forms of the disease, is, oh, I don’t know, high enough that I make a point of not knowing.
Some people inherit genes for ghastly illnesses for which there is no cure and about which they can do jack shit. One example is the gene for early onset Alzheimer’s, which is not a predisposition, it is a guarantee of dementia and death by age 60. I am fortunate. I can take steps to reduce my risk of breast and ovarian cancer to way less than that of the average woman. I can save my own life. And I did. Six years ago, I had surgery to remove my ovaries and fallopian tubes. And in January, I had the mastectomies and reconstruction. My husband, mother, and sister were all wonderfully helpful during my hospitalization and recovery.
My saline implants are temporary now, but I will go in for my surgery to place the permanent silicone implants in the fall. Between now and then, I’m allowed to do all the stuff I love to do, even play soccer. I’m on a spring team, and I have logged a goal and two assists since the season started a month ago. Oh, and I have plans to capture a slew of states this summer. I feel empowered by my decision and haven’t regretted my choice for a single moment.
The way I figure, if I had continued to postpone surgery, with each passing year, I would have a greater chance of contracting breast cancer, and if I got it, I would feel stupid for letting fear of change endanger my life. I would then have a mastectomy anyway, and I would also have to go through chemo and radiation, and I could DIE. Feeling like I had stupidly contributed to my own death would suck. I’m sure that my dying thought would be regret. That’s not how I want to go.
Today, I feel great, I feel normal, and I am no longer burdened with the threat of cancer which has lurked in a dark corner of my life since my cousin contracted ovarian cancer in her 30s and I tested positive for the mutation.
Best of all, I don’t need a bra. That’s right. No bra. Even for soccer!
My former breasts did their job. I nursed both my daughters and cherished doing so. My new breasts are firm- ok, really firm. But they are more shapely and they fit my muscular frame better, in my opinion. And my opinion is the one that counts.
I have kept my diagnosis under wraps, as concealed as my breasts, since 2010. At that time, I decided not to tell my daughters about the mutation. Each has a 50 percent chance of inheriting it. Nothing can be done until your early- to mid- twenties in terms of medical management, and I wanted them to experience their college years without having to wonder if they would have to face some difficult choices as they progress into full maturity. I shaded the truth when I had my ovaries removed in 2010, and again this year with my second surgery. I hope they understand that I did it for them. I hope they know that I will be there to guide them through testing, genetic counseling, and whatever they may face. I hope they are negative for the mutation but if not, I hope to help them understand that there are worse things to face.
Looking back, I can now tell you, I must tell you, that the Avon Walk for Breast Cancer that I completed some years ago with Kelly and Jen was even more meaningful than I let on. I had already had my ovaries removed, and I knew that there was a very good chance I would someday sit in a stark waiting room watching a white-coated radiologist with a downcast expression walk purposefully down a hall toward me to tell me I had a malignancy. And on March 12, when I completed that Breast Cancer walk with Kip and Kay and Susan on my 54th birthday, I no longer walked with that fear. What sweet freedom.
While I was in the hospital, one of the nurses asked me if I had ever heard of Sharsheret (www.sharsheret.org). It’s an organization devoted to helping Jewish women who carry BRCA mutations to find community, counseling, and understanding. Ashkenazi Jews have far more BRCA mutations than other groups (Outside this group, one in 300 people have a mutation.) I called Sharsheret and offered my services as a peer counselor. Despite the fact that I am not Jewish, they welcomed me with open arms. I look forward to helping other women with BRCA mutations to face each day with courage and a sense of gratitude for the choices that we have. Knowledge is power.
Here I go again, lapsing into confident tone, looking at the world through my trifocal rose- colored glasses. I suppose there are worse things… I must be an optimistic, happy person.
I can live with that.
