I will write this not to raise alarm bells, nor to let my fears and worries spiral out into the mucky sea of collective uncertainty. I don’t wish you to hold me in thoughts of sorrow or sympathy. Still, this needs to be written and shared because I know someone out there will read this and will know the exquisite pain and heaviness of uncertainty and I want YOU to know you are not alone. I share this in hopes to offer some guidance as to how to tread these murky waters.
Two weeks ago I got a call that my recent pelvic ultrasound results were questionable. I was ordered to go for blood work and to return for another scan in 6 weeks. I’m holding court with a vision of these two cysts being just that, regular normal cysts that will go away on their own. Over the years I have had them before, and while uncomfortable, they just burst on their own. No big deal.
The ironic timing of this news is that I have been debating in my mind the recommendation of my doctors to relinquish my ovaries by the time I am 40. Chemo does a number on you, and for some the total cessation of your monthly cycle is one of the many side effects. I was thrown into a yearlong “chemopause” that came with all the discomforts that menopause brings. Only just recently did my hormones come back online and I could feel a complete return to my old self again. Why couldn’t I just stall the oophorectomy a little longer, until maybe 45? Do I really need to put myself through another surgery in the next year or two? Am I ready to be thrust into permanent menopause within hours of this procedure, hitting the irreversible switch?
Looking at the data, the statistics aren’t so good for women with the BRCA 1 gene mutation. While the general population has a 2% risk of developing ovarian cancer over the course of a lifetime, the risk for BRCA 1 women is somewhere in the 35-70% zone. I have shelved this data, with a proverbial wave of my hand and a “yeah-yeah, whatever”, until now.
The dismissal of symptoms in the recent past has not served me. What I thought was a swollen lymph gland was a tumor. I’m a little gun shy, trying to find the middle ground between optimism and dismissiveness, hope and denial. While I would like to take the kid-gloves off, I still question everything in a new way. I am hopeful and feeling full of life, yet I know that I never want to endure chemo again if I can help it. I know that my little ovarian oysters are tricky to diagnosis. It is not until things are too far gone that they can detect ovarian cancer.
After my breast surgery, I had met another BRCA 1, triple negative breast cancer survivor. She told me that she had gone for her oophorectomy immediately after having her breast reconstruction. It seemed strange to me, and I admit feeling a little judgement about it. I am not of the mindset that it’s normal to just keep cutting away parts of your body. My incisions were still screaming red fresh and the PTSD of surgery and the oncoming chemotherapy had me in a head spin. I wondered, “Am I playing God here? I was born this way, with this genetic defect. Maybe I am not meant to live out a 70+ year life.”
Here is where my faith and the empirical value of science wed. I look at my little boy and my husband and feel the precariousness of our day to day life. These guys need me around for the long haul if I can help it. And here I am standing on the threshold, given a choice that truly can help prolong my life. While I have enjoyed the juiciness of my hormonal youth, I can choose to view it as just another small sacrifice. This is what it comes down to for me when our little family sits in a cozy hug sandwich.
If you are still reading this, I bet you too know something of courage and bravery. You know that by turning your back and not making a choice, you are in effect making a choice. I can’t say for you if this is the right one or not. I think of all my brothers and sisters in this world who are not given much of a choice, who have lost hope, and for that I am truly sorry. Still, there is work to be done here, lives to touch, love to share, until the last breath and beyond.
How do you keep moving in the face of uncertainty and fear? You hold onto the hope around you until you can find your own, and with a little seed of courage, you take that first step forward.
*For the BRCA+ people out there, here is a decision tool that can help you compare your options with or without surgery, based on the data of recorded survivor rates.