You are so brave and quiet, I forget you are suffering.
Being brave and strong is what is expected of us, but we can’t let them forget. We must be vulnerable, visible, and vocal. We will tell our stories to anyone who will listen, for they will know us all better for it. I’ll start.
Hi, my name is Rebecca. I am a 38 year old woman. I was born to a mentally and physically abusive mother. I was sexually abused for most of my childhood, at times trafficked. I emancipated myself at age 16. I had my first son at 18 and my second at 22. The second arrived at the overdue end of an unhealthy marriage. I raised them both as a single mom while working full time. I lost my uterus in my mid-twenties to fibroid tumors. I went to school full time and got a degree, then lost my ability to work in that field due to hereditary and environmentally caused mental health issues. I had both of my ovaries rupture, nearly killing me, in the span of just a few years. I have had seven surgeries in the last year for a whole host of reasons. And then, along came BRCA.
I may not be that old, but life has given me the privilege of many challenges to overcome.
Having struggled with so many female health issues throughout my life, and a long history of female cancers in my immediate family, I decided just over one year ago that it was time to get tested for the BRCA gene mutations.
I decided this under the influence of fear. I was rarely submissive to fear. Hence, it makes a great motivator for me. This fear stemmed from a very logical place.
First, my family history, in which all of the women who had been diagnosed with cancer had presented with it around age 40. At 37 years old myself at the time, this seemed like it was just around the corner.
Second, it was just months before that my last remaining ovary ruptured dramatically.
Distanced from my family for very good reasons, and having no maternal figures in my life, I had no idea what to expect. Although I knew somewhere inside myself that the results would be positive, and prepared for the worst. When I was told that I had the BRCA1 gene mutation I found myself feeling sunk. My heart dropped into my stomach.
At the time I made the decision to get the testing done, I was in the process of reinventing myself. I had discovered my passion. I had been volunteering at the Reid Park Zoo in Tucson, AZ with the elephant team. It made my feel alive. So, very, alive.
But, I had to stop. I had to stop to begin the process, and to make no mistake, it is absolutely a process. I told myself that I would fast track through it. I wanted to get it all done as quickly as possible. So that my return to the zoo would be sooner than later. I would schedule the double mastectomy immediately, followed with the reconstruction, and then run through the finish line with an oophorectomy.
Nothing, though, is ever as planned in life. Especially for me, I find.
I found that everything the doctors were telling me was simply not realistic. Or what I had been told previously by the genetic counselor.
I had doctors tell me that it was no big deal – that I wouldn’t suffer from much pain. Yet, there was a LOT of pain.
I had doctors tell me that the surgery was an option, not a necessity. I remember looking at them, with an angry brow and a fire in my heart, thinking “What do you know about what is necessary, for me?” He had no clue how strong the cancer strain was on my maternal side, not to mention how consistently and how early it hit the women in my family.
I realized through this process that doctors were talking at me, not to me, and certainly not with me. So, I began to take power into my own hands. I did research online. I gained most of my comfort, knowledge, and some of the best tips I ever could have hoped for, reading about the experiences of women who had walked this path before me.
With the extensive family history and female health problems I have had since I was 18 years old, it is absolutely amazing to me that with every complication I had ever had, doctors didn’t want to look any further into it. They preferred to shrug their shoulders and call my conditions typical “female problems”, as though that were a category of medicine like dentistry or podiatry. They wanted to brush me off.
The fact that these tests can be done, that they can pinpoint these mutations, is truly amazing. It just isn’t enough, though. There is nowhere near enough doctors who genuinely care, or perhaps it is that they simply don’t understand the patient’s true needs. It is rare that they actually explain the risks of their individual procedures, their piece of the BRCA puzzle. Support before and after falls short, not just within the BRCA community but within women’s health in general.
Had it not been for online forums, I wouldn’t have known about the special pillows I might need, comfort bras, the best ways to sleep, and good diets for recovery.
The idea had already sparked in my mind to participate in sharing things that I had found or experienced so that I might help someone else, someone in the position I found myself in, desperate for guidance and support.
This was around the time that I began to structure an idea for a book. I mapped out what I was going to write about. The book’s story starts far before the BRCA, but it really put the icing on the cake. I realized that what I really was looking to do was to reach out, and tell my story. It was more than just writing a guide book.
I wanted to expose myself, and my life, to women who were feeling vulnerable and let them know that vulnerability is something I share with them. That they are far from alone in it. Surviving cancer, or having prophylactic surgeries to prevent cancer, is extraordinarily hard on the body, mind, and soul.
However, I am a strong believer in women’s health being holistic. The reason I want to be forthcoming about more than just my experiences as a previvor is because whether you’re a previvor or survivor you lose something – you lose your hair, or your breasts. You lose your ability to have children and the very hormones that make up our chemical feminine balance.
Thinking that all we have to do to get through all of this is to recover physically is ridiculous. Being bold and vulnerable and honest publicly is the most important thing we can do for each other, and for those doctors, who need to learn about the humanity of what they do. We all need to teach each other, and learn from each other.
I absolutely love seeing all of you ladies on Instagram being happy, wearing pink and teal, smiling in every post, working out whenever you can. I’m proud of you for showing your strength.
I encourage you to never be ashamed of the hard days. Don’t be ashamed to fall down once in a while. Every fall, you will find you can get up a little faster. A little stronger.
When I started my Instagram page it was a way for me to put myself out there and be vulnerable. Women are not all the same, but we are never alone. We often have things in common – surgeries, journeys, mutations – but every one of us is special, together.
I went online to learn from you, and now I’m ready to show you what I’m going through as well.
That’s how I connected with Tracy from BRCAStrong. I think we connected the first day I started my Instagram. Then, her followers and the people she follows were everywhere. I saw so many stories – some similar, some very different to mine. It just felt right.
My breasts are fake. I have no more, zero, reproductive organs right down to the fallopian tubes (did you know they are now suspected as the source for ovarian cancer? I didn’t, until after this whole process got underway). I am seeking out new hormone therapies as I have found myself unhappy with the synthetic ones I am taking.
I work very hard to live my life to the fullest every day now. There truly is a before and an after with BRCA. What keeps me going is my strong family, my desperate need to help other women, my drive to educate and advocate about women’s health as a whole, finishing my book, and those beautiful elephants.
A special thank you to Tracy for seeing me for who I am, a woman with a story worth telling. You can follow along with my story @r.black8890