Pinktober is a month that I’d love to ignore. Everywhere I go, I am reminded of breast cancer. I am of course glad that there is care and concern for breast cancer around the country, since the statistics are so shocking. 1 in 8 women will develop breast cancer in their lifetime. Yes, you heard me right… 1 in every 8 of us. It is the most common cancer for women around the world. See The National Breast Cancer Foundation for more information on that.
I hate that the color pink reminds me of my mom’s battles with breast cancer and the struggle that other women I know have endured due to the disease. It is also a time for me to reflect on my own breast health. As I have mentioned before I am a BRCA gene mutation carrier. My boobs or ovaries could theoretically kill me someday. I have to deal with this fact EVERYDAY, not just in October. Plus, this Pinktober brought on some new challenges for me.
MY BRCA+ STORY
I have known about my BRCA+ diagnosis since August of 2008. It was at a time when I wasn’t really ready to hear that kind of life-altering news.
Before the test came I figured that I was a carrier, since my mom is a carrier of the gene and also a two-time survivor; as well as the fact that many women and men on both sides of my family have had or died from cancer. However, I was happily naive teaching my third graders, being a somewhat new mom (my kids were 2 and 1 at the time), and talking with my husband of a larger family with dreams of buying our forever home in our perfect little family-friendly town.
Did I paint that picture clear enough for you? That really was the reality I was living and I was happy with our life.
I went in for the blood test a month before my results came in- three days before my last year of teaching started. I didn’t know at the time that it would be my last year teaching in an elementary school classroom. Sitting across from the doctors and hearing the news and all the ways I could prevent cancer, made my world came to a screaming HALT.
I all of a sudden found myself afraid and vulnerable. I was not alone, but I sure felt like it.
I poured myself into my classroom and completely ignored the protocol that the geneticists were prescribing-ovarian ultrasounds every 6 months, alternating mammogram and breast MRI every 6 months, CA-125 blood tests and more. The “more” required surgery and the removal of organs that I was not willing to part with at 28 years old.
However, I will never forget driving down the highway about eight months later, with my babies in the backseat, crying to Carrie Underwood’s Jesus Take the Wheel thinking that one day I wouldn’t be there with them.
That was my breaking point.
It was that moment that made me pick up the phone and make my first screening appointments. In April, I scheduled my appointments for late June, but the emotional roller coaster and turmoil had already set in and I decided at that time to take a leave of absence from my teaching position so that I could focus on the next steps in the process of taking care of myself.
It was ultimately the best choice for us, but not a day goes by that I don’t think about the “what ifs…” had I stayed in my job.
My first appointments were a blur, but a good blur. There was nothing abnormal at the time.
So, I got busy researching and studying the BRCA gene. I wanted to know: what options were available, do I need surgery yet, what about our dream of having more kids, when is the best time to make plans for preventative care, is my doctor well-informed, which hospital network has the best tools and research available, what other forms of wellness can I consider, organic vs. nonorganic foods and products, new boobs at 30, 35, or 40-which is best, essential oils???? And even more questions. After years (yes years) of research I was more confused than anything.
I kept up with my screening appointments over the years. They were scattered in-between two pregnancies. One which ended in a 12 week miscarriage and the other with the birth and subsequent nursing of our youngest child. All of those tests came back clear.
We continued to live our life. We planted roots and bought a new house for our family of five, but the weight of my gene mutation was always lurking in the shadows. That fear always held me back from making plans and setting goals.
I switched doctors three times between 2010 and 2014. I finally found one that was well-informed, knowledgeable, and well-connected to new research. Plus, he listened to me and all of our concerns, fears, hopes, and dreams regarding my gene mutation. We got busy making a “proactive-care plan” in the spring of 2014 and I followed through on it-well most of it.
In June and July of 2014- all of my scans and test results were clear. Woohoo!
I was to have a follow-up mammogram and ultrasound in six months. Well, I never made those appointments. Life got busy, I couldn’t find the time, there was too much going on to go downtown to the doctor…but in reality, I just didn’t want to know if something was wrong with me. Living in fear-knowing that the fear of your own cells causing cancer is real-is an anxiety roller coaster and I didn’t want to be on the ride.
That’s when I learned that I am considered a previvor. According to FORCE (Facing Our Risk of Cancer Empowered) “Cancer previvors are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The term specifically applies to the portion of our community that has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.” It comforted me knowing that I was a member of a larger group of people with similar feelings and needs.
Fast forward to September of 2015. I was getting anxious and worried, so I called to get in to see my doctor and schedule all of my tests. I was able to make all of my appointments for October. After the tests, I learned that my ovarian ultrasounds, my CA-125 blood test, and my mammogram all came back clear, but my MRI showed a 4mm mass on my my left side.
I was not anticipating that kind of news nor was I prepared for how to deal with it…even though I knew to expect it at some point.
This was my first experience with REAL FEAR regarding breast cancer and myself.
I realized after the call from the radiologist that even though I thought about myself as a potential breast cancer patient, I didn’t really believe it… until that moment.
After tears, hugs, and lots of silent space between my husband and I, we were able to schedule a biopsy for a week and a half later. It would be an MR Biopsy and I would have results the next day. That week and a half dragged on and on. It took all my energy to wake up and pretend like nothing was wrong for my kids, go to work, keep up with my household, and fulfill my volunteer duties. I only shared the news with a few close friends and family and they were kind to say prayers and send me uplifting notes. I thank each of them.
When I went in for my biopsy, they told me of the potential for a false-positive and that due to hormones the same mass might not show up this time. I was of course convinced that I had breast cancer, so when they pulled me out of the MRI machine and told me that I didn’t need the biopsy because they couldn’t find the mass, so therefore I couldn’t have cancer-I was in shock.
I was actually almost mad that they didn’t find it. I was so convinced that I had cancer that I wanted definitive proof that I didn’t have it, I didn’t know how to take his words as fact at face value.
I didn’t have cancer. This time. Next time might be different.
I went back to the dressing room early, got changed, and went out to a surprised husband in the waiting room. We left the hospital in relief and silence. It took me all day to process the news.
It wasn’t until my Dad called me and asked if I was thrilled with the findings that I even gave it a full thought. I said, “No, well I don’t know. I don’t really know how to feel about this”. And he told me that, “Today is a WIN. Take it. The next one might not be, but today was a WIN.” I think that’s good advice from the husband of a two time survivor and as a son of a cancer survivor living with CLL.
As much relief as I feel for my family and myself, I can’t help but feel sadness for the people that have no control and no anticipation of cancer hitting their families. Knowing my risks and percentages are scary and empowering at the same time, but knowing that I can do something to be proactive is the best approach I can take.
I know that each scan may bring me back to the need of a biopsy or something else. For now, I am meeting surgeons and finding out about my surgical prevention options. I want to be well educated and know of all of my options before making a drastic choice that I can’t undo. I’ll keep my scans and tests up-on schedule this time-until I figure out my next step. For now, I am just glad that Pinktober is over.
So, today… even if you aren’t a BRCA carrier or battling a disease, take each day as a WIN. ENJOY the life you have and APPRECIATE IT-all of it… the good, the bad, and the ugly. There are days we all wish we could take a do-over, but the do-over days are the ones that teach us the best lessons and show us what to appreciate.
If you are having a rough day, find the tiniest sparkle in the mess-like that one piece of glitter you see, but can’t get out of the carpet-and shine your light on it. It will reflect back to you and magnify all the light around you. Give yourself grace and let go of your predispositions and judgements-be true to yourself and your family.
Be the LIGHT in someone’s dark days. I’ll never forget the kindness that friends showered on me-I needed that light, especially in the shadows of my fears.
We are all human beings-be a champion for yourself and others.
There are no happy accidents~
**This is my personal story and not meant to provide medical guidance. However, if my experience empowers you to investigate genetic counseling or to take care of your breast health-then I am happy to hear it. Comment below and share your story.**
Breast Cancer is the most deadly cancer for women between the ages of 15 and 54. However, there is hope. When it is detected early enough, the five year survival rate is greater than 92%. Self-detection is key and there are lots of resources out there to remind you to check yourself. I recommend signing up for text alerts from Bright Pink. Just text PINK to 59227 (regular text message rates apply). It’s easy and helpful for us busy ladies!