Missing Socks and Breast Cancer. Who Really Has The Answers?

Where in the hell do all the socks go once I put them in the washing machine? I just bought Marco ten pairs of socks, so TWENTY socks total. I put twenty in the washing machine and when I sat down to fold socks there were seventeen. Is the sock fairy flying in at night and stealing stinky, sweaty socks for her collection? Did I drink too much last night and hallucinated that I saw twenty socks or maybe thought a good solution to doing laundry for the fifty seventh time today was to throw random socks in the trash? If I did do that, why didn’t I throw matching pairs away? Well, because I drank too much, which makes sense. But then why aren’t the socks in the trash the next day? This quite possibly could be the most complex word problem known to man. So complex that the answer can only be solved by government officials in the Whitehouse that have special clearance. That would be my one question if I ever met a presidential candidate. “What do you plan on doing with all those socks your hoarding at the Whitehouse?” They would look at me with a blank stare and call for backup but we’d have a silent understanding that I knew what was really going on.

 It’s one of those frustrating things in life in which I will never find the answer. Which is exactly how I feel about never getting justification or answers as to how I got Breast Cancer in the first place. Around 246,000 women who will be diagnosed with Breast Cancer in our country this year. There aren’t any statistics available for how many of those cases will be Paget’s Disease, but what is available is Paget’s makes up for less than 5% of the yearly Breast Cancer cases. In my search for justification as to the “why” of my whole situation I followed the recommendation of my surgeon to undergo Genetic Testing.

About a month before I delivered Simona, I started the Genetic Testing and Counseling portion of my journey to see if I could get some answers as to why this all happened, to find my missing sock, so to speak. I have one paternal aunt who had breast cancer and that’s it. I am very active and healthy. I am young. Why in the hell did this happen? I opted for a blood panel that tests for 17 different gene mutations, including the BRCA1 and BRCA2 genes. 56-87% of Breast Cancers come from the BRCA gene mutation. So, my chances were good that my cancer was genetic. Before having my blood drawn I met with a genetic counselor and provided her with all of my family history, thanks to my mom. We discussed the different ways cancer develops: genetic mutation, lifestyle choices and environmental factors. The session was extremely interesting but there is so much information it’s hard to take it all in. I highly recommend that if you or someone else you know is going to start this process that you work in pairs and bring a notebook to take notes and reiterate to each other what each of you heard, so that you know you completely understand what is happening. That’s comprehension for dummies and it works fantastic for me. It was important for me to follow through with testing because the results were going to give me my timeline for not only my next mastectomy but further testing that would need to be done for my mother, sister and my children. If I tested positive, my oncologist, surgeon and I decided my other breast was to be removed as soon after delivery as possible. Positive test results also mean that each first degree relative has a 50% chance of also carrying the mutation. 50%! When I heard the percentage I began to think about my mom, my sister, my niece, my nephew, my son, my future daughter. Remember when I said cancer impacts an entire family? This is another piece of that, we’re not just talking about emotional aftershock, this could now impact their health. On one side of the coin, I was thankful we detected it in me, so now my family could make informed decisions for their health. But on the other side I couldn’t help but feel sick to my stomach, because this all seemed like an awful story that just didn’t seem quite real, one that you’d read in a novel and recommend to your friends but with the disclaimer that it was a heartbreaking read.

If I tested negative for the BRCA gene it would give me more time to breastfeed (which is a whole separate blog post…feeding with one boob, fun!) and my mammogram could come months later instead of weeks. As I had mentioned before, being diagnosed while pregnant, left a lot unsaid because further testing was restricted. But now the Genetic Testing could give me an idea of where to go next and how soon. Four weeks pass and I am called to come in and review my results. As I am sitting with the genetic counselor I start sweating (I know, big surprise) because I have no idea what the results will be. I just want to enjoy the rest of my pregnancy and have a healthy baby girl that is not going to have a predisposition that leads to chairs like this,  offices like this, with counselors like this and reviewing results such as these. I love my team of dr.’s and specialists, but truly, the less we see of each other, the better. I keep telling myself, that the results will give me some sort of answer, help my family make decisons and help me put this situation to bed. As the counselor begins to review my results with me I feel an overwhelming sense of joy because I tested negative for the BRCA1 and 2 gene, as well as negative for the 15 genetic mutations they screened for. That’s the exact result I wanted but yet I felt unrest. My mind starts running and I can’t help but wonder, what in the hell happened? My cancer is classified as caused by, ”environmental” factors. I start to obsess over when the exact tipping point happened. Which birth control pill once I swallowed it caused the cell mutation? What car was I behind and where was my exact location when I inhaled that exhaust that caused it? What deodorant, what lotion, what chemical on my food, WHAT THE HELL WAS IT? I don’t remember a single word that my counselor tells me after that because I get lost in my own train of thought and I am by myself. I do remember snapping out of it and saying something along these lines, “So my cancer was caused by something we don’t know what and we don’t know when. It was not related to my son’s breastfeeding or either of my pregnancies? It had nothing to do with my age, my race, my health status, my family history or my genes. I had two types of cancer which could be related (very likely)…or not? What you are telling me is that I’ll never know the answer.” My counselor was so patient throughout my questions because I think she could see that I was discovering that I was never going to know the answer to my nightmare. She looked at me with pouted lips and an empathetic face scrunch and said, “That is correct.”

Then, BAM, it hit me. All the times that I have worked with families, staff and students who have gone through a trauma; the Sparks Middle School shooting, strings of student suicides, deaths of staff members, deaths of students, displaced victims from Hurricane Katrina, the list can go on and on, I could relate to their pain on some small scale, but really what it boiled down to is I didn’t understand what a trauma causes personally, that I had zero clue the psychological toll trauma can cause. Sure, I’ve seen things I wish I hadn’t and probably have some sort of second hand shock from my work as a counselor but I finally understood that trauma forces our brains to justify the situation so it can process and heal, we have a need to grasp the “why”.  But unfortunately a lot of times there is no answer. I am NEVER going to know why. Can you imagine what that’s like? When I look in the mirror and see the 5 inch scar across my chest, I am never going to know the answer. When I put my bra on and my prosthetic falls out with a big thud on the floor, I will never have an answer. When I get my blood drawn and I have to direct the Phlebotomist to use my left side and they ask why, I have no answer. When Marco asks me where my boob went, when I get my blood pressure taken, when I put on a bathing suit, etc. I am never in my lifetime ever going to know the answer to what caused my cancer or where the hell the socks are going. Sometimes when I write these entries I feel guilty because I survived. I feel guilty because there are so many people that have had, are currently having and will have a far worse experience. But then I remember that I’m lucky enough to live to tell the tale, the way I want to tell it and connect those in the community and beyond with the impact cancer has on individuals and families and marriages, good lord the marriages-they take a beating.

Even though I will never have the answers I have had an enormous amount of support to help counteract the not knowing. To the readers, I have no clue how many I have now, but I have had to date 9,729 page views. That is incredible. This whole blog started out as a little paper notebook journal that Mariluz basically bullied me to start writing in. It turned into a therapeutic means when I felt like I was going to lose my shit. It gave me escape from my life for thirty minutes so I could process my day. It progressed to a blog to help me continue to cope with my situation and to help others as well who were going through something similar. Please know that I read your comments. Please know that I appreciate your “likes” and your time. Please know that even though I don’t respond often to your comments, it means something very special to me, I look forward to reading them. Please know that I am aware of the typos and grammatical errors and I am working on not giving a shit because it’s not meant to be perfect, but if you want to find me a ghost writer I’ll gladly accept. From the bottom of my heart, thank you for reading.