WHY THIS? WHY NOW?

So many of you have been so generous and open in sharing your stories with me.  To say I am grateful barely scratches the surface. With surveys replies topping the 100 mark, some from outside of the US and Canada, I have lots to work with.

I’ve read each of the responses and I will be actively pursuing additional responses.  Whether you are foot loose or fearful, dating or committed, patient or partner, LGBT or not, private or public, I need your stories.  I can assure you, I will not be attempting to hunt down anyone who chooses to remain anonymous.  This is a highly sensitive topic.  I’m mindful of that and I respect and honor the privacy of each and every one of you.

Why does this matter?  There are many books out there and there’s lots of buzz online.  There are seminars popping up all over the place.  All of this is a great step in the right direction.  Much of what is out there is coming from the view of one single person or from the experiences of our clinicians.  This is different and it’s meant to be different.

My goal is to bring the voices of many to the forefront.  It’s not my story.  My story matters to me.  Your story matters to you. Collectively, however, our stories can shine a light that is more representative of what really goes on behind closed doors.

Having said that, it’s time I share some of my own story specifically as it pertains to this project.

I love sex.  There.  I said it.  Love it.  I love kissing and touching and lovemaking.  Intimacy.  Emotional and physical.  It matters.  It’s a big part of my life.  I love just plain “messing around.”  I’m not going to cheapen things in this space by a blunt choice of words, thus, I’ll stick to clean language despite the fact that my vocabulary is peppered with words and phrases that might make the hair on the back on the necks of some stand on end.

In 2006, my body and by default, my life changed dramatically.  I made a choice to remove my breasts.  I know it was the right choice for me.  Damn it to hell, though, I MISS my nipples.  I didn’t realize how much I would until they were tossed into a research pile in a pathology lab.  I became self conscious of my appearance.  Although this was never an issue for my husband, it was for me.  I undressed behind a closed door or removed by blouse with my back turned. My reconstructed chest looks great by many standards, except mine. Thus, my self consciousness led directly to my lack of confidence in me.  In my former sexual self.

Part of the treatment for my breast cancer involved a salpingo-ooph0rectomy: the removal of my ovaries and my fallopian tubes. In other words, there were gynecological surgeons on my treatment team.  Shortly after I was all finished with the breast cancer portion of the program, in fact, it was my very first visit to my own gyn, my pap came back all messed up.  Six months after being released from the MSKCC gyn doctor, I was right back in their offices.  And right back in an operating room for a cone biopsy to remove the cancerous cells that were attached to my cervix.  NO, I did not have cervical cancer.  Tomato-tamatoe.  I didn’t have cervical cancer but when I called my oncologist screaming into the phone, he gently talked me off the ledge.  “Do you have the pathology report, AnneMarie?”  Ummmm, duh…. I have every paper from every test, every set of notes from every appointment.  That particular paper was being flailed about in my left hand as I was screaming into the phone I was holding in my right.

No, I did NOT have cervical cancer but these were his words after hearing the report.  “So there are cancer cells present but you don’t need me.  This is a surgical cancer, there is no chemotherapy at this stage.  You will have a cone biopsy which is both diagnostic and curative.”  I have this tendency to pick apart words and those words are burned in my brain and were picked apart in the days and weeks shortly after this mess began.  Sure as hell sounded like a cancer situation to me but I know I was dealing with a highly curable disease.  (This is a bit pertinent to my other blog considering what happened in India and maybe, just maybe, this is why I am so outraged over that mess.  It’s all here if you are interested.)

From mid 2008 through mid 2010, I was seeing the surgical gynecological oncologist every three months, then four, then six. After one visit, she called me to say it was time to be “proactive.”  I freaked.  I had been arguing with her from the cone biopsy. “Remove EVERYTHING.”  She kept the situation calm, I trusted her and I followed her lead.  “Let’s not remove any more body parts. Please, give me a couple of months to see what happens.”  And I did.  When she called to say it was time for a complete hysterectomy, I was a mess.  What changed?  It seems scar tissue was building up and she was fearful that she would not be able to get a good pap, that there could be cells causing a problem above the scar area and we wouldn’t know until I was symptomatic.  It was time to remove everything else, cervix included.  Cervix, especially.

THIS surgery was done in October 2010 and the timing could not have been worse.  We scheduled it in May.  The doctor said it was okay to wait until after the summer although when her office called at 9AM the following morning to set the surgery date, a grand total of less 9 hours after my discussion with her, I knew there was some urgency to this mess.

Six weeks prior to my surgery, my husband and I separated.  This is not something I have every blogged about at any length.  I’ve alluded to it, some may know from behind the scenes but it’s not been a matter of public posting.  I have often shared that I have to respect the privacy of others when I blog.  I am an open book as it pertains to my own life but when it involves my kids or my marriage, I walk a fine line.  They don’t want their privacy invaded. Some of their “stuff” spills into my life so it can be challenging at times.

Writing about October 2010 is challenging. For the previously mentioned privacy issues and because it’s painful.  Having every female part now gone, with a marriage teetering on divorce, I was thrust into the world of a single woman.  Who the hell would want such damaged goods?  My husband didn’t want me and I couldn’t wrap my brain about being more than the sum of my physical parts.

The mere thought of being with another man without all of the scars would have been terrifying.  Add the mastectomy scars, the abdominal scars and the fresh scars from the robotic hysterectomy and I was toast.  Hell, I would have taken terrified under the best of circumstances.  Mine weren’t.  They were quite possibly, on a marital scale, as bad as it could get.  This was an emotional minefield and an impossible hurdle.

Between 2010 and today, lots has happened.  Many things have brought me back to a place of confidence but I’m still quite self conscious.  I have three years of stories to tell but I’m still not ready to share those publicly.

Said differently, I get it.  On many levels. Being married, being single, feeling rejected, blaming my scars for the rejection, mind-screwing myself and on and on.  I could tell my own story, but I prefer to wear my advocate hat and speak for all who wish to share their moments.

Fondly,

~AnneMarie

There is a PostScript of something that got lost in my edits.  We are working to put our marriage back on track.  It’s not easy but we are both all in.  What tomorrow holds?  I have no crystal ball.  I stay in the moment and in this moment, we are working hard at reconciling lots of things.

 

 

 

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