That is what I feel like I am living in. There are always negative people saying negative things. That is a part of life and I learned that fact very young. This is not something that has changed as I have gotten older. I always remember my parents and my teachers advising me on the importance of being kind to people. Let's face it, you will always encounter people that you do not agree with for one reason or another and at some point you will let that be known. We are all human. But I'll be damned if I do not take the time to try to understand a differing point of view or a new experience. When I began my BRCA journey, I did not tell a soul. I did not even tell my boyfriend that I had tested positive for the gene mutation. I was 19, in college, and I was worried about my mom's next chemotherapy appointment and what I would wear on my next date. The only other person that I knew with a BRCA gene mutation was my mom (and presumably my grandmother). I did nothing with this information for years. Then I was a young woman of 23, in law school, when I decided to reach out. I searched for BRCA and breast cancer support groups. I wanted to find other women just like me. I hit the jackpot. I came across the BRCA Sisterhood which then led me to Beyond the Pink Moon and well, the rest is history. What did I learn on these websites? Well, first, I learned that I was not alone. I learned that many men and women dealt with hereditary cancer and made many different decisions with regard to their health. The other thing that I learned was that everyone is different. This is a lesson that I continue to learn every single day.
I decided to have my healthy, albeit dangerous, breasts removed only to be replaced by uncomfortable implants and cushioned with fat from my own thighs. I went through four surgeries and am coming up on my fifth surgery all to avoid breast cancer. I went through breast reconstruction that slowly stretched the skin and muscle in my chest to make room for my new implants. My chest is seared with scars. I have numbness and nerve pain in my chest, my back, and my arms. But this was my decision and I do not regret it at all. I could have very easily kept this decision private. I could have only told those closest to me and no one would have ever known. And you know what, it is okay to maintain your privacy if you wish to do so. But I decided to go public with my story. I thought back to that 19 year old girl who was terrified to lose her mom to cancer and that felt alone. I thought that sharing my story could educate others about BRCA, hereditary cancers, risk factors, etc. I never once thought that I would be both privately and publicly chastised for my personal decision and my subsequent decision to share my journey with others.
Going back to that lesson that I continue to learn...We are all human. The beauty in being human is that we are all very different. We come from very different backgrounds, we all have different experiences, we all think differently, and personally, I think this is what makes humans so beautiful. Here is where the alternate universe comes into play. We treat each other terribly despite our unique beauty. This applies everywhere but I am noticing it more and more in the cancer community. I actively follow women and men that I meet online through their cancer journeys, whether they be a patient, someone seeking preventative measures, or even a caregiver. The most notable thing about each of these individuals is that they are all so very different. Some of them face their cancer with humor, some are filled with fear, others remain quiet about it, and some rely on their faith to get them through it all. Each person has their "thing." My "thing" was humor. I got through and continue to get through each day with my humor. I try to find that silver lining in every dark cloud. I do not believe in a G-d. I believe in science and I believe in my physicians. Pink ribbons drive me crazy at times because they are often slapped on products linked to cancer, but then again I have a pink ribbon tattooed on my ribcage. Should people be more mindful of the pink products that they buy? Yes, they should. But hey, sometimes these products start a conversation that could lead to wonderful things; hell, I buy pink pens quite regularly. I once spoke to a stranger at the grocery store who was buying reusable shopping bags with pink ribbons plastered all over them and asked if her life had been affected by breast cancer. She divulged that she had never known someone affected by the disease (I know, shocking!) but that this was the only way she knew to give back. That tiny interaction led to a conversation about different organizations that could use the donations more than a multi-million grocery chain. I guess the point that I am trying to make is that someone is reading this right now and is disagreeing with me. But that is okay. There was an OB/GYN who recently underwent a mastectomy, Deb Cohen, and in the operating room she and her medical team had a fabulous dance party. I watched the viral video and I cried like a baby. Is she a better patient for dancing prior to her surgery rather than a patient that is wheeled into the OR terrified and praying for his/her life? No. But it is beautiful to watch people approach a scary time in their lives being unapologetically themselves. Is a blogger who shares every excruciating detail of her metastatic, stage IV breast cancer seeking sympathy or sharing too much? Of course not. That blogger is educating others and sharing information that people need to hear and often do not. Most of us do not realize that writing about these very personal experiences may be therapeutic for that person and we should respect that. We all have different ways of dealing with these difficulties that we face in life.
I think that those of us in the cancer community and those who know people affected by cancer--or anything else really, need to be mindful. As a woman who is proudly a part of a growing community of male and female survivors and previvors, I feel that it is important to applaud everyone who is enduring something, whatever that may be. I will not judge you for the way that you decide to handle what you are going through. I will not belittle you for your "you-ness." If someone shares their personal story and you do not necessarily agree with it or you do not want to read it, well, then don't read it! If it pisses you off to see a woman dancing in the operating room; don't watch it. These quirks make those people who they are and one would assume that they find peace in what they are doing. So, who are we to take that away from another person? Why do we as women, want so badly to be respected and advocated for, but turn around and tear each other down? Why do we as humans find something wrong with the way that someone chooses to express themselves or with the way that they are born and then act shocked when someone commits suicide? Wake up. These are not the things that matter. What matters is that people respect one another and embrace the differences among the human race.
I have heard every negative remark in the book with regard to my personal journey and fortunately I am able to let things go easily. I find peace in knowing that maybe, just maybe, my sacrifice of privacy has served as a beacon of hope for someone else. Just as seeing someone facing surgery following a diagnosis and dancing in that moment, inspires me to be myself, unapologetically. Just as witnessing a woman enduring never-ending and painful treatment for terminal cancer also brings me hope, by teaching me more about these metastatic cancers and motivating me to teach others and raise further awareness. Both women exude grace and strength, both women do so very differently, and the beauty is in those differences.
I think that Ellen DeGeneres says it best when she closes her show with: "Be kind to one another." Please.
