In Her Words: Bonnie Powers
June 27, 2017
Following our piece, "Let's Discuss: BRCA1 and BRCA2," we interviewed cancer previvor, Bonnie Powers. After testing positive for the BRCA2 hereditary mutation and with a significant history of cancer in her family, she made the proactive decision to undergo a double mastectomy as well as remove her ovaries and fallopian tubes – the same precautionary measures Angelina Jolie took.
Bonnie likens carrying a BRCA mutation to "a ticking time bomb" and feels fortunate to have learned of her diagnosis, because it ultimately saved her life. With the hopes of spreading the word, celebrating her bravery, and supporting other BRCA-positive women, we’re excited to share Bonnie’s full story below.
Name: Bonnie Powers
Location: Sausalito, CA
Current Health Status: Cancer-free
Tell us a little bit about yourself.
I was born in Long Island, raised in Houston and have lived in California most of my adult life. I absolutely love the West Coast, being near water (something I got from my mom), forest surfing (what my husband and I call the kind of hiking when we are underneath the coverage of trees) and taking day trips to discover pretty things. My work life combines a lot of my personal interests — I am both the managing director of creative agency Hatch Design in San Francisco, and curator at Poet and the Bench, a Mill Valley jewelry, art and home goods shop I own with my husband, Jeffrey Levin, a goldsmith and jewelry designer. We’ve been together for 10 years, married for 5.
When were you diagnosed with BRCA2?
It all started 17 years ago. My older sister was diagnosed with breast cancer at the age of 40. I was 30 at the time and proceeded to have my first mammogram and follow-ups every 3 years. 11 years ago, I was referred to a high-risk breast cancer group by my gynecologist to increase my surveillance for breast and ovarian cancers. 9 years ago, the number of cancers in my family scarily increased: my father had two types of lymphoma and prostate cancer; my mother did not survive multiple myeloma; my sister ended up also having cervical cancer; I had melanoma; and then I found out my brother had melanoma many years earlier.
Then 7 years ago, my sister tested positive for BRCA2, and 3 years ago was diagnosed with breast cancer again – this time in her other breast (a common aspect of the mutation is to have different breast cancers 15 years apart). While my surveillance had been constant ever since my sister’s first cancer diagnosis, once she was diagnosed with it for the second time around, I knew that I had to get tested. Results told me that I was positive for BRCA2, at age 45. Now knowing (100%) that I was also a carrier, I had some choices to consider.
What were your first thoughts when you were BRCA2 diagnosed?
My first reaction: Shock. Disappointment. Sadness. Knowing that it I was positive – I didn’t get a pass – my family didn’t get a pass. Anger. Fear. F*CK! F**CCK!! F***CCCK!!! F****CCCCK!!!!
After the first few days and talking it through with my husband, family and friends, I came to another reaction: acceptance. I have a genetic mutation and there’s a strong probability I’ll get breast and/or ovarian cancer if I don't do anything.
And then came gratitude. I didn’t have to wait for the probable diagnosis. I had knowledge. I knew how fortunate I was to be able to do something. To prevent breast and/or ovarian cancer in my future. To preserve my life. I was grateful to know I have a BRCA2 mutation because ultimately, that knowledge saved my life.
How did your friends and family take the news?
It was really hard telling my dad. He told me he was sorry for his bad genes (ugh, that was crushing). It also wasn’t easy telling my older sister (she had gone through multiple diagnoses), and it was hard not to feel a little guilty that I would be saved from that. But of course, she was nothing but empathetic towards me. Telling my other siblings meant we had more to think about — them getting tested, implications for their children, also telling our cousins. Friends were incredibly supportive. They opened their hearts with sweetness — a gentleness that was more than we expected.
When I decided to make my journey public, I faced various amounts of deep love and strength from others, but also judgment (surprisingly). A healer (yes, a somatic healer) told me, “Please tell me you’re not going to do something stupid? Like cut your breasts off?" Another guy told me that I could cure myself with a plant-based diet — yes, that is a healthy lifestyle, and one I prescribe to often, but that’s not going to miraculously get rid of my gene mutation.
Describe your treatment and how you arrived at that course of action.
With a BRCA mutation, it’s a bit like a ticking time bomb. The reality was that I would face a diagnosis of breast and/or ovarian cancer at some point if I didn’t take preventative action, and I wanted to avoid that possibility. As we age, our body’s ability to recover changes. I knew if I did this now, I would be better set up for successful surgeries and healing. Also, I’d already been under aggressive surveillance waiting for a diagnosis (that waiting takes its spiritual toll), and after much research and contemplation, I opted for prophylactic surgeries.
In August 2013, I had a Bilateral Salpingo Oophorectomy (BSO) to remove my ovaries and fallopian tubes. My gynecologist and oncologist both said that because I had no other complications — no cysts, fibroids, diabetes, non-smoker — and because there is such a very small risk of uterine cancer due to cells left behind from the fallopian tubes – there was no urgency to take the uterus. I could always have the hysterectomy later on too if there were any signs I should do that. I liked the idea of less risk to my organs, which meant less time recovering, and the option to wait until later.
In December 2013, I had a nipple-sparing Prophylactic Bilateral Mastectomy (PBM) to remove all of my breast tissue (and those potentially mutating cells) with an oncologist breast surgeon. At the same time, I also had reconstruction with a plastic surgeon, recreating breasts using my pec muscle, tissue expanders and a tissue matrix called AlloDerm. In April 2014, I had the expanders removed and exchanged for Natrelle Style 15 (moderate-plus profile) 339 cc silicone implants.
Were you able to work through treatment?
I took 2 weeks off for the BSO which was sufficient. I’d say after 4 weeks I was fully recovered and back to myself: doing yoga, power walking and preparing for the next. For the PBM, I was luckily able to combine vacation time with our office being closed between Christmas and New Years to take 4 weeks off. I went back to work with various limitations that took many more weeks to improve, but nothing that prevented me from doing my job.
Where and how did you find the best care?
My care was through an HMO plan that I had at the time, at UCLA (Los Angeles). Once I received the diagnosis, I researched other hospital systems and recommended doctors to determine if I should move from UCLA. I concluded that since I had amazing access to some of the most premier doctors in the country, I would remain at my UCLA group. My genetic counselor, oncologists and surgeons were all accessible, easy to talk to, gave me their time when we needed it, answered all of our questions and made us feel safe (I'm so appreciative and grateful for that).
Did you receive any additional support or alternative therapies?
I did preparation work prior to both surgeries, including eliminating caffeine, eating a lot of anti-inflammatory foods and beverages, making sure to exercise and got a prescription for physical therapy to strengthen areas that would be impacted (pre- and post-surgery). I listened to a meditation (specific for surgery and recovery), as well as did walking meditation (post-surgeries).
My physical therapy was through a mostly women’s only office that specialized in breast cancer. I think their knowledge and experience gave me extra understanding of what to expect, as well as helped with recovery in ways that I couldn’t have predicted. A stronger body was a critical aspect of having a better recovery.
What or who have been your biggest supports? Who makes up your tribe?
My husband was there every step of the way. He saw this as his pain, too. As a caretaker, he made sure I was comfortable and stayed on my pain and other meds schedule (you don’t want to chase the pain!). He helped me research, we chose doctors together, and he picked up the slack when I wasn’t able to do a variety of things. Friends near and far pulled their resources and sent us meal kits so we wouldn’t have to spend energy cooking. Family checked in, flew out to visit and made sure Jeffrey had the support he needed.
What has been one of the most challenging aspects of the experience for you?
Going through this without my mom.
What is one thing you wish you knew before you were BRCA2 diagnosed?
I don’t think I fully understood, during all the years of surveillance, that there was no early detection for ovarian cancer. When it is caught, it is typically in advanced stages and hard to cure. I had a yearly vaginal ultrasound to check my ovaries, fallopian tubes and uterus for abnormalities and a CA125 blood test that looks for elevated protein levels which is an indicator for ovarian cancer (I still do them yearly to check for peritoneal cancer). I feel incredibly fortunate that no cancer cells were ever present through my surveillance and BSO.
Is there a particular mantra or inspiration that helps you?
As a BRCA2 woman who didn’t have a breast or ovarian cancer diagnosis, it was “keep your eye on the prize.” This, for me, was a mostly temporary situation. If I could get through each part of the process, each surgery, each “no cancer cells found,” then I could, perhaps, feel liberated from the fear of hearing the words “you have cancer” that drove my life for 17 years.
If you could offer a woman, who has been newly BRCA diagnosed, some words of wisdom for her journey, what would you tell her?
“Knowledge can be our gentlest friend if we let it be so.”
My choices were aggressive. Some even say radical. I didn’t have a breast or ovarian cancer diagnosis, but one day I could, and the statistics and mutation made it so. Prophylactic surgery may have been my tool (our tool) to prevent that eventuality. In many ways it was a life preserver. I would want others to be empowered, as I was, by the choice.
What are you most proud of in your journey?
I knew I wasn’t only doing this for me, I was doing it for all BRCA women. I wanted to prepare myself for and share my story with grace and make my journey available to other women. Because it was so difficult to find information on my specific situation, I felt by sharing mine, if I could help even one other woman, it would make my journey ever more reasonable. I was lucky to not have any complications, and I think it’s important for others to know that's possible.
This was my first blog post (see here), and the story continues through the BSO and PBM recoveries. Any readers should feel free to share as needed.
How has your experience affected your outlook on life? On illness?
I will forever be grateful for the researchers, doctors, nurses and genetic counselors who made this possible. They gave me a choice. I’m also very aware of how lucky I was to have insurance and many good doctors and hospital resources nearby. I’ve been a witness to countless stories about the single (and maybe not ideal) doctor covered by insurance or the 3-hour drive necessary to reach that doctor or the lack of insurance benefits to cover.
How have you changed?
With so many cancers in my family, with aging, with life, it’s not always easy to find peace – the definition I’m referring to here is free from disturbance or that quiet and tranquility one gets when at peace. With each new body ache, skin lesion, call from family, we await some kind of news. And so the work is to not get caught up in it – it (the fear, the lack of peace) exists but we don’t have to be attached to it.
My priorities shifted. I try to not get so attached to the small or trivial stuff (which may only be recognized as trivial when we lift the veil), and I try to spend time on the things that bring me great joy. Life (in the thick of cancer, disease, mutations) can get very serious and isolating, so it's best to just let go in order to make space for peace and joy.