I have a very long list of things I wanted to get done today. Writing this blog post was on my list, but I wanted to get some things related to life and the world of Tallulah’s Diner (my first published Children’s book) done first. Instead of knocking those things off my list, I opened my Facebook and came across the new song entitled “Pink” by some pretty kick ass ladies. Since it tied into what I wanted to say in this particular post, I decided to leave the groceries on the counter, the Manuscript for Book 2 on the computer and the laundry in the washer to sit down and write.
- Before I get too far into today’s post, I feel the need to warn the reader’s ~ shit is going to start getting real. Writing a blog is interesting and a little scary. The writer has a platform to expose some really personal stuff. And, while this is certainly intimidating, my hope is that one day, my words will help someone else in a similar situation find some courage to realize she too can do hard things. 😊 That being said, the closer I get to the reality of surgeries and recovery, there may be times things get SUPER personal and visuals will be part of this journey. If that isn’t for you…..no worries. I will still like you. Thanks for checking this blog out, don’t let the unfollow button burn your finger on the way out. 😉
Okay….back to it………
Since I found out about my BRCA1 status, I have felt a little uncertain as to where I “fit” in this vast world of breast and ovarian cancer. Since I have NOT been diagnosed with either cancer, I was uncomfortable wearing the teal and pink ribbons that are so popular in the culture of today. The best I can describe the feeling is “unworthy”. My heart is heavy for every individual that has ever had to travel the rough road filled with a mix of poisonous medications, radiation treatments, endless appointments, hair loss, extreme fatigue and fear. Every one of these individuals has a story and I am not certain that mine will ever compare. I also feel a bit awkward heading into all of this without a family history of Breast Cancer and I know that I am super fortunate to have never lost a loved one to these horrific diseases. Not having these connections contributed to my hesitancy to jump on the all things Pink (or Teal) train.
There is also some controversy over the commercialization of the colors and whether or not all the hoopla is helping to serve the purpose of awareness and though treatments are always advancing, one wonders when the day will come that the medical community can announce and celebrate that longed for hope of a cure. You know how sometimes; one’s greatest character trait can also be their worst? Well, the intense time I put into analyzing and trying to see the good on both sides of the coin can absolutely be a blessing and a curse. The more I research and learn, the more I am enlightened to the inner workings of both commercial and charitable organizations. I am starting to realize that not all charities are great and not all commercial industries are bad. I know I have a lot more to learn and imagine I will slip down a rabbit hole at some point during my own recovering. But for today, I will simply state that as of early October, I bought my first Breast Cancer Awareness shirt and wore it with my head held as high as I comfortably could hold it.
Now, let me tell you why I chose to finally wear the shirt. As a BRCA1 mutation carrier, Breast and Ovarian Cancers are both severe threats to me. To my current knowledge, neither of these cancers have started their cruel cellular invasion…for this I am thankful. However, the threat of these notoriously viscous opponents IS stripping me of quite a lot. As stated in a previous blog, my hysterectomy is scheduled for November 3rd, which is 11 days from now. That surgery will take away those never seen internal parts that have bore my son, caused me some lovely emotional rides and continue to provide me with the necessary hormones to relish in the pleasure of intimacy. Once they are removed, I have a high likelihood of dealing with some not so pretty side effects. Hot flashes, insomnia and a Lady Land that will have a new climate more in line with the Sahara Desert to name a few. I know that menopause is naturally occurring and that I would eventually deal with all of these things anyway, but I still have the threat of cancer to thank for the additional years of its unpleasantries and the surgery that I would not have had on my own accord.
The threat of breast cancer will also find me shedding my breasts from my skin sometime in winter/early spring. I met with my Breast Oncologist, Dr. Emilia Diego on October 13th. She was fantastic and reiterated the fact that removal and reconstruction were good choices. I have an appointment to meet with the Plastic Surgeon on November 11th. Together, we will figure out the best foob option for me.
Even with losing so many things that are associated with womanhood, I still felt funny donning the pink and teal. And then, I found my motivation. I thought past myself and to those in my life who may have to make tough decisions themselves someday. At this time, my brother has not been tested, so we don’t know if he carries the mutation. We do know that he has a 50/50 chance of carrying it. IF he does have it, his girls will each have a 50/50 chance of receiving the mutation from him. If he doesn’t have the mutation, his girls will never have to fear this particularly scary unknown. However, if he does, then my nieces will have to decide at some point in their adult years whether they want to be tested or not. And then, there is my son. We recently found out that he DOES carry the mutation. And, although he doesn’t have ovaries, his chances for male breast cancer does increase (though not nearly as much as a woman’s). Men also have a slightly higher risk of developing prostate cancer, pancreatic cancer and melanoma, which means he will have to start checks for both at an earlier age than most. We also know that any children he may have in the future will have those same 50/50 odds. As if life and relationships aren’t hard enough, he will carry the weight of this knowledge forever. I still believe that with knowledge comes power and am glad that he knows now. I am simply sad that he carries it and know that it comes directly from me. I imagine I will touch on this again later, but for now want to focus on today’s message.
The fact that the hypotheticals of today may someday become difficult decisions for my son, nieces or possible future grandchildren is the catalyst for me to put my foot on the platform and jump on the pink and teal train. If I can in any way advocate now so that maybe one day, these kids that I love (and hope for) have better treatment options or a cure, then I’m going to do it. I am going to wear that pink and teal and hope that someone asks me about it. I will muster up the strength I will need to get through the surgeries and recoveries that are currently haunting my thoughts of the future. I will try my best to use my voice in a positive and educational manner. I will gladly volunteer to be a part of research groups that continue to work diligently for a cure. I will try my best to find worthy organizations that raise money for research or a cure and not to line the pockets of the greedy. And someday, when these kids reflect on the person I was, I hope they find memories of a lady who was strong and willful. What they may never fully understand is that they were the ones who gave me the fortitude to move forward on the days I wanted to be still. They make me want to be in the best health possible, so that I can enjoy their craziness for many years to come.
And so, here I am modeling my first Breast Cancer shirt…….I am sure it will be the first of many.
- And here I am showing off my BRCA Ribbon mask. 🙂
The threat might be taking some important parts of me, but it’s not getting the best of me.
Some days I contemplate if I am happy about knowing or not……so far, I keep ending up at the same answer……YES! This mutation makes me feel like I have a ticking time bomb inside my body, and I am happy that I am lucky enough to have the chance to deactivate it before detonation.
I have no idea who may eventually find their way to this page, but if you are here because you think you might want to get tested for the BRCA gene, please talk to your physician and figure out what is best for you. If you are here because you are BRCA positive, please know…..you are not alone. And, if you are here because you know me and are following my journey. Thank You!!! I appreciate knowing you are in my corner.
Until next time.
And…….here is the song for the post. XOXO