I know I am not alone when I say the uncertainty and fears of the COVID-19 pandemic is resurfacing a myriad of feelings for those with BRCA. It’s easy to look at your situation, whatever it may be, and feel guilty for the way you are feeling and tell yourself “I know others have it worse than me.” While that may be true and it’s important to keep perspective, it’s also important to allow yourself to feel, however that may be. I am often guilty myself of feeling selfish for focusing on my own concerns. It’s much easier to tell my friends, “your worries aren’t trivial, what you’re feeling is completely valid!” than to actually embrace that belief for myself.
One of my mentor BRCA sisters told me something yesterday that resonated with me deeply; “You can care, but not carry.” In other words, of course we care deeply about the global pandemic and the impacts it is having on other people. Of course we are worried about the health of others, the economy, people losing their jobs, women giving birth right now, the president's antics, our students, our colleagues, the hospitals...I could honestly spiral for hours and dig myself into a deep hole of anxiety. While at the same time, many of of us are trying to juggle the new normal of working from home full time and managing our own kids.
So here goes...for the time being, trying to focus on just carrying the heavy weight of how COVID-19 impacts the journey of those with BRCA, including myself. If there is one thing I have learned over the past year is that I am not alone in having BRCA. There is a whole community of women going through this journey and while we all cope differently and make choices that work for ourselves and our families- we are also deeply connected in a way that I truly can’t articulate in words. Helping carry one another through this journey has helped keep me afloat.
Being diagnosed with BRCA
Women early on in their journeys who may have just found out they are BRCA positive must feel even more scared and alone than under normal circumstances. Genetics counseling to understand what your diagnosis means in conjunction with your family history, is a crucial part in interpreting your risks and therefore your decisions.
Screenings
When you have BRCA the only proactive thing to do aside from surgeries is screenings with hopes to catch cancer early. For 7 years I underwent breast MRI’s, mammograms, pelvic ultrasounds, blood tests, and yearly appointments with my oncologist and OB. Screenings are now on hold. Since I already had my mastectomy, for me, this means no monitoring of my ovaries. To say that is terrifying is an understatement. For others, it also means no breast screenings. This is anxiety ridden on so many levels. It intensifies and resurfaces many of the fears I have learned to cope with over the years.
Surgeries
I convinced myself I was being proactive and taking preventive steps towards living a life where the fear of cancer wasn’t at the forefront of my mind. While I feel so grateful that I had my mastectomy in January, the next step to move forward both physically and emotionally was the exchange surgery in April (removing the tissue expanders and putting in breast implants). I had a plan in place that took years to come to fruition and now it is on an abrupt halt and the kicker is, no one has any idea when it can resume. Many women have had their mastectomies and exchange surgeries put on hold and unless you’re going through it, no one can really understand how emotionally taxing this is. If you have a loved one going through this, in my experience, I am grateful when my friends and family do not try to relate or give advice. Assuring me that they are here to talk or listen anytime and they love me is much appreciated. The physical discomfort of the expanders bothers me on a daily basis, but I can cope with that much easier than the emotional implications. Having another baby is so important to me, what if the surgery is delayed so long that my entire timeline is derailed and I am faced with deciding between a significant risk of ovarian cancer or removing my ovaries and not being able to have another baby? Can I get pregnant with these uncomfortable expanders inside of me? Would I even be able to move forward emotionally if I did? I could go on and on with my hypothetical questions...but I realize that is not productive.
Cancer
People who are undergoing cancer treatment or recently finished chemo are at extremely high risk right now and are immune compromised. And the thought of going to chemo treatments alone is just unfathomable. I worry about my cousin who is still on chemo pills from breast cancer and feel deeply for anyone undergoing treatment, always, but especially during the COVID-19 pandemic.
So today, rather than letting myself spiral and judging my own feelings, I will try to remind myself that what we are carrying is heavy and for right now, we are doing the best we can.
How are you all feeling?
Love,
Erica
Photo and quote credit: @THEMINDGEEK
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