Ok, I admit it: I am a control freak. My books are alphabetized and organized by genre, dishes must be facing away from the silverware in the dishwasher, and I prefer to exclusively use eleven-point, Garamond font. And it really goes far beyond merely fancying things very particular ways; one of my core guiding principles is that we all have the privilege and responsibility to choose the lives we desire. From how I arrange my books to where I live to the people I build relationships with, I am actively creating the life I want for myself and my family.
I’m guessing you know what happens next–a hiccup, interruption, curveball, surprise, trouble. Lots of names for the thing that makes stories and life itself interesting. The reminder that there is a limit to what we can control.
It turns out that I have a mutation in my BRCA1 gene, which basically means that the proteins my body is supposed to form to fix problems in cells might not be produced. If damaged cells accumulate, they could become cancerous. Research has shown that people who carry this genetic mutation are much more likely to develop breast and ovarian cancers. We are so much more susceptible to these diseases that doctors highly recommend undergoing a bilateral prophylactic mastectomy and hysterectomy with bilateral salpingectomy-oophorectomy by the age of 35. (Translation: removing almost all of the lady parts.) I am 35.
On Friday I will check in to the hospital at 5:30am, and by early afternoon the parts of my body that could one day harbor the growth of cancerous cells will be gone. I’ve known that this day was coming for almost fourteen years. After my mom survived an aggressive form of breast cancer at the age of 43, her doctors recommended undergoing a fairly new genetic test to see if a faulty BRCA1 or BRCA2 gene was responsible for her cancer. When she tested positive, I made the decision to see if I also inherited the mutation. I did.
For all of these years I have resisted letting this tiny deletion on one gene control my life. I still chose to have fertility treatments despite the risks of introducing more hormones into my body, Curt and I waited to have children until we were a bit older, and I nursed my babies for as long as I wanted. I was calling the shots. And I have willingly made the choice to dramatically alter my body in order to prevent cancer. But what kind of choice is that really? Let’s be honest: I’m not in control anymore.
Unlike many people who undergo surgery, I have had the luxury of plenty of time to prepare. Plans are made for Asher and Annabelle to stay with their grandparents, Curt has arranged to take time off from work, my friends have organized meals and spoiled me with all of the teas, lotions, chocolates, books, and fuzzy socks I could possibly want, and I have all my post-surgery supplies, pillows, and blankets ready to go. These preparations have allowed me to feel a semblance of control. But now surgery is in three days and all of the unknowns, the uncontrollables are suddenly hitting me hard.
How will I feel when I wake up? Will it hurt? Will the pain go away in a few hours, days, weeks, ever?
How will Asher and Annabelle respond? Will they be scared of the bandages and drains?
When will I be able to pick up my kids again? When can I cuddle them without fear of ripping a stitch? Will these next couple of months hurt our relationships?
Will Curt be ok? I can’t imagine watching him go through something like this . . . . When will he be able to stop worrying?
What will I see when I look at my changed body? Will I see beauty or ugliness? What will Curt think?
What will other people see? Will they judge my decision not to have reconstruction?
Will the estrogen patch fully prevent me from going into menopause? Will I be moody? Irritable? Have hot flashes? Lose my hair?
How will the surgeries affect my health? Will I struggle with cardiovascular issues? Osteoporosis? Something else?
Will I still be me?
These are big, scary questions. I’m doing my best to focus on my family and friends right now and trust that I will work my way through these questions when the time comes. I have lots of plans for the future–supporting my children as they grow up, celebrating ten years of marriage (and 20, 30, 40, 50, 60, and 70!) with Curt in some gorgeous tropical place, running relays and half marathons with my friends, spending many holidays with our amazing extended family, reading all the good books, and teaching and learning from many, many students. I hope, I believe that the surgeries will help me be able to realize these plans. But I am also trying to accept that life will be different in ways that I cannot anticipate or plan for. So here is to letting go of what is out of my control and holding on to myself and my people.