The BRCA+ Decision – guest post

BRCA+ ??

There is a unique sub-group of survivors whose ranks have been slowly growing on the Breast Cancer Blogs page.  This is a group of women, mostly young women, who are faced with the very difficult decision – to opt for an elective mastectomy, not due to any active symptoms nor any laboratory confirmation of a malignancy but rather due to a strong genetic predisposition to later breast or ovarian cancer.  These women have discovered they have a mutation in their BRCA1 or BRCA2 suppressor gene.

So as all of us as survivors have been mentally listing life’s graces that we are thankful for, this young blogger has been wrestling with the implication of her recent decision to have a mastectomy.  She writes about her struggle very clearly and touchingly at That Girl…tales from the edge

Getting it off my chest…

Last night afforded the hubby and I a rare opportunity…time…work has been crazy for me, I’ve been working long hours, Battle of the Books has started again, along with our other “after-the-football-season” activities. So, we spend our weeks running from place to place, not really having time to just sit and talk…I got home and headed upstairs to change into my pj’s…couldn’t decide what looked comfortable so I sat on the floor in my closet and organized my shoes…still couldn’t figure out what to put on so I laid down…on the floor…in my closet…hubby came up to find me and, understandably so, thought something was wrong with me…ha! We relocated to the bed to rest…and started talking…I miss talking…

Hubby is even more private than I, so I will respect his privacy and not relay what was said…I’ll relay my thoughts and feelings or interpretations of what was said…

It is difficult to explain the oxymoron that seems to be my life…how is it possible to be grateful that I have the “good fortune” of being proactive yet angry that I have to make choices? How is it possible that I am thankful for the changes to who I am as a result of my surgery yet terrified that I will change after the next? I think one that confuses many people is that I made a choice yet struggle with the choices I’ve made…

I know I come across as being confident, maybe totally at ease with who I am…and sometimes I really am just that. However, the phrase “fake it ’til you make it” applies here. There was a period in my life where I let the hardships of life control me – control my mood, control my behaviors – and I woke up one day tired of it. I resolved that day to choose to be happy…and that’s what I did. It wasn’t always easy in the beginning but I kept making a purposeful decision to find the good in the world…eventually, I was successful in changing my outlook, successful in finding joy even in the face of adversity. I guess, looking back, it could be the reason for those heartbreaking hardships were prepping me for what was to come. I needed to be able to choose, not let my circumstances make my choices for me.

Even though I am able to find the good, it doesn’t take away the pain or anxiety…it doesn’t mean I am not aware of what I am walking through, it just means I’m focusing on something other than the fire. It also doesn’t mean that I don’t ever get overwhelmed and need space and time to work through it, chew on it, and determine the best path forward…I just try to not let it consume me…

I know it is easy to see someone with their “game face” on and automatically assume they are okay…and those of you closest to me know that I won’t often turn the conversation to me and what I’m going through. I find it difficult to segway a conversation to what is floating around in my head…so I usually turn my attention and focus on my friend and, unless asked, it just isn’t discussed…I am so grateful for those who do ask…those who know what is occurring and make it a point to talk about it. Sometimes, my thoughts need a breath of fresh air and, all of a sudden, it all seems much clearer. I also know not everyone wants to talk about it, and I’m okay with that…I’ve realized not all friends are the same and not all friendships are the same…

While we were talking, hubby was explaining what was occurring around me after my first surgery…my doctors and the nurses taking care of me. He said they kept repeating over and over how brave I was, how courageous a decision this was…another oxymoron, I guess. I made the choice because I’m terrified of getting cancer…yet I know it was not a choice for the weak…I feel weak when I have moments of doubt, moments of being overwhelmed at the thought of how different I am, how scarred…I will never be whole…yet…when I hear people say it outloud, I can almost believe it…almost…and becomes a source of strength while I think about the next…and I consider the unknowns…

I wish I could pull my thoughts out and put them on display because I feel as though I don’t do them justice trying to write them out…I cannot adequately describe how my choices do not really feel like a choices…I want the choices of someone who doesn’t have the risks I do…THAT’S what I want…and I know I will never have that…so it becomes a game of choosing between a lot of crappy options. Yet, it isn’t a game because I’m sitting across the table from cancer…so, just like I get all jumpy when I have my hand for Phase 10 and am trying to decide whether or not to hold-out another round, I don’t want to find out I’ve been sitting on it too long…because, if I do, cancer has gotten the upper hand…so I look at what I know and choose…and my choices have so far been the ones that give cancer the least amount of opportunity…

It is strange to hear the perspective of someone you love talk about your life from another angle…it can serve as a good reminder or it can feel as though you are putting someone else through difficult times that you wish you didn’t have to…it would be more comfortable if I didn’t have to drag my family through whatever it is…I know I’m the one feeling the physical pain but I know it isn’t easy to be on the other side, powerless to it all.

The clock has started ticking…and after a good cry last night…after speaking outloud the thoughts swirling in my head…after explaining how I may never feel “whole” yet acknowledging my new-found respect for my body…talking about what choices really mean…I feel as though I’m ready…life is never predictable and we learn as we go…and this is just another opportunity for me…I am the one who chooses what to make of it…

Sometimes, the most powerful thing to be relayed is love…no judgement…and absolute support…I am blessed to have all three…I draw strength from his courage…

~ That Girl…tales from the edge

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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