This post has been a draft for too long. I keep wanting to finish writing but then life distracts. It’s been nearly 20 years since my sister’s first breast cancer and the start of my surveillance; just over 3 years since confirmation that I carry the BRCA2 mutation; and just under that amount of time since my BSO, double mastectomy and reconstruction. While I wrote about the process and my experience through this blog, at best to help anyone else going through similar, it was also cathartic for me. Helped me have some purpose—that is, of course, beyond the purpose of preventing the inevitable breast and/or ovarian cancer diagnosis. I’ve been brought to tears with responses and comments from others going through similar. That my experience has brought even some little bit of respite to someone else who has questions about what to expect, words just can’t describe. I wanted and still want to be useful.
That said, I took quite a bit of time away from posting. Being immersed in research, preparation for surgeries, having surgeries and going through recovery, I just needed some time to float.
We also had some big changes in our lives. We moved to Northern California just about 2 years ago for a new job for me. And in November, we opened up a store. It’s a collaboration with my husband (he’s a designer >30 years) in addition to my full-time work, and while he’s there 6 days a week, I spend time every Saturday in the shop and otherwise participate in artist curation, marketing, social media (follow us on Instagram or Facebook if you are so compelled!) and various PR and other outreach efforts. It’s a great creative outlet, I’m learning about retail, and I love the community we’re getting to know—from our neighbor stores (our “shop families”) to our neighbors and visitors from across the Bay Area and around the world. The artists’ stories and visitors’ stories are narratives that fill me up. ~It feels normal. I’m living in my identity, not my mutated one.
There’s now distance from the enormity of what I went through.
- Gratitude. I feel incredibly fortunate to have had a choice and that choice before a breast or ovarian cancer diagnosis. I will forever be grateful for the researchers, doctors, nurses and genetic counselors that made this possible. I’m also very aware of how lucky I was to have insurance and many good doctors and hospital resources nearby. I’ve been witness to countless stories of the single (and maybe not ideal) doctor on insurance or the 3 hour drive to the only doctor on insurance or the lack of insurance benefits to cover…
- Compassion: I can’t help but think about those who have had a diagnosis. My heart hurts. We’ve been through it in my family. We know. Additionally, to those who find out they carry BRCA 1 or BRCA 2 mutations…I send my love, healing wishes and strength around the planet in my meditations and intentions. I wish no one had to go through any of it.
- Surveillance. The weight lifted of having some kind of diagnostic test to check for breast or ovarian cancer 8 times a year the past nearly 20 years (add 4x skin cancer checks for a few years and it was a 12x/year threat waiting to hear those words…). The risk prevention surgeries just about eliminated those tests. I still get my CA-125 checked (blood test) once a year for any signs of peritoneal cancer (low risk, but if there’s a raised level of the protein, it signals my doctor to check for this or other causes of a raised level) and see a derm oncologist a few times a year to check for melanoma.
- My body. It’s taken time and patience to allow my body the chance to recover, to acknowledge changes that may have been temporary or not, to adjust without regret and to be open to a return of a not quite pre-surgery body. And let’s face it, age takes its toll, too. Exercise, clean eating, less stress, a free mind, an active life… all important to continued good health. My shoulders still ache at times. But I can lay on my stomach again! I got my yoga back (though my knees are not happy). I don’t have a period (wow, what we go through every month for decades! I don’t miss it.). And still on the Combipatch (HRT) with very few side effects.
- Support. I’m here for you. Please reach out if I can be of any help. If you need resources or support group information, check out FORCE, it’s an important organization that’s fighting hereditary breast and ovarian cancers. Watch Pink and Blue a movie about BRCA focusing on the journeys of both women and men. Watch Decoding Annie Parker or read Annie Parker Decoded to learn about the researchers behind BRCA and one of the first women to be tested and her journey of survival. Read/share Letters to Doctors to read about others’ journeys and to educate practitioners on the experience we have receiving the oft times confusing and terrifying diagnoses. Read/share I Am With You, an anthology from survivors and caregivers. I’m also planning on connecting more with the community here to bring together some amazing people I’ve met. One is the founder of Everviolet, a collection of intimates and loungewear for women in various stages of recovery to find lingerie that fits their changing bodies (launching this year).
- Peace. The definition here that I’m referring to is freedom from disturbance… or that quiet and tranquility one gets when one is at peace. With so many cancers in our family, with aging, with life and that other definition, freedom from violence, it’s not always easy to be in this place. Each new body ache, skin lesion, call from dad, my siblings… we await some kind of news. And so the work is to not get caught up in it. It exists but I don’t have to be attached to it. “In all the times I am not thinking of the situation of distress, times I can cultivate by deciding to put my attention elsewhere or times that arrive by grace, like phone calls from friends, my mind gets a chance to rest… Even a short period of time of sitting quietly, in a comfortable space, feeling the rhythm of changes in the body as breath comes in and out of it. Paying attention to the way the shoulders rise and fall, or the belly pushes forward and then settles back down is both simple and soothing. When my mind is relaxed, I am able to think of the person in pain with compassion and to think of myself with compassion, too. Compassion is another form of happiness.” (Sylvia Boorstein). With that other definition, and the news we await… Talk about racism and prejudice. Talk to your kids. Talk to strangers. We can’t be silent. “Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.” (Martin Luther King Jr). We can’t let hate have the final word. So, to find peace—of mind and of difference—I’m [constantly] working on my own right actions and walking in the brightest light.
Until next time…