INITIAL FINDINGS….

I participated in a webinar sponsored by my friends at Breast Cancer Action.  They knew about this project and invited me to share some of what I’ve learned from the narratives you have provided.

As we approach the season of “we have no time for a single thing,” I wanted to take a moment to express my gratitude to each and every one of you for participating in the survey.  Since I’m not an analyst and my best work seems to lie in translating the research of others, I’m in the process of putting together the information in a working outline.

Both surveys are still open.  This project was launched a year ago.  It is not a stagnant project.  It is one of great importance to me and it is also one that requires thought and time and a clear mind in order to do it proper justice.  I will continue collecting information as I move this up the list of priorities.  2015.  The Year Of Me.

As I wrote in my primary blog, this year has been one where I’ve been challenged and tested on many levels.  My time has been consumed by things well beyond my control and all of those things required my involvement.  My writing in 2014 was 25% of what it had been since I first began blogging.  Some things are not blog worthy.  My blog is about me, it’s not about invading the privacy of those who choose not to live life so openly.  Unfortunately, some of this so called involvement does directly involve me.  It has been incredibly difficult to keep this from my public life but I must respect with wishes of others.

With that thought, I wish each of you the happiest holiday season and a new year filled with joy and peace and love.  And to those who are riding a rough patch, know that I’m beside you in that very same patch.  I’m determined to reclaim my life for me and to remember the old adage about putting on my own oxygen mask on FIRST.  As I reach for the oxygen, I leave you with the full You Tube presentation of the first peek at what I learned from all of you.

It’s an hour long, and there is a photo of my scars…… found in a medical journal….. and although I was never TOLD the image is me, I do know what I look like.  And, I know I stood in front of the mirror comparing every line, every mark and if that’s not me, well, let’s just say I have a breast cancer reconstruction twin out there who happens to have been operated on at the same time, in the same hospital…..

There was a question at the end of the webinar regarding the anonymity of the respondents.  I wanted to provide the answer to that question.  The percentage of those who identified themselves by name….. 81%.  The same percentage provided valid email contact information.  In addition, 39.5% included phone contact info.  In other words, thank you for being so open about everything!

With love,

AnneMarie

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SHARING YOUR THOUGHTS

The project continues.  It’s not been forgotten, it’s just been one of many balls I’m juggling at the moment.

I’ve done a quick analysis of the responses.  My friends at Breast Cancer Action invited me to participate in a webinar.  I will be presenting the unsexy side of breast cancer.  The most important aspect of advocacy, at least for me, is to remember that it’s not all about me.  It’s about the community and bringing the voices of many to the conversation.  That is precisely what I hope to achieve during this webinar.

I missed most of October.  In fact, I missed the entire month.  For the first two weeks, I was recovering from the effects of a reclast infusion.  The first day I felt better, my husband found his way into an emergency room which was the beginning of a ten day stint in an ICU.  Severe acute pancreatitis caused by hypertriglyceridemia, which, in his case, appears to be a genetic thing.  He was discharged from the hospital on November 1st.  Since I started the month of October in bed with a fever hovering at 102 and spent the rest of the month raising hell in a hospital where they need a few lessons in patient centered care,  communication with family members and the concept of shared decision making, I missed the pink hype.

We did a run through of the presentation the other day.  The first half of the webinar will focus on the sexualization of a disease and the manner in which some of the awareness campaigns cross too many lines.  We are women, not objects.  We are more than our breasts.  In fact, there’s a living, breathing person attached to those breasts.  The second half will, I hope, get people to think about the women attached to the breast, about what happens after a breast cancer diagnosis, about what goes on in our minds, about the effects on our bodies and what is, or more accurately, is not happening in the bedroom.  At least some bedrooms.

If you’d like to join the webinar, there will be two presentations next week:  one on Wednesday and one on Thursday. The information is on Breast Cancer Action’s website if you’d like to join one of the live webinars.  There is no charge.  Next week is the San Antonio Breast Cancer Symposium, too.  I’ll be following the twitter feed and it may not be possible for some to join the live presentation.  No worries.  BCA will provide a link so you can watch and listen at a more convenient time.

I hope to see you there.  The survey is still open.  If you want to weigh in, I’ll be writing notes for my presentation right up until game time.  Add your voice.

In related news, I was interviewed for a publication of facingcancer.ca, Lives Affected By Cancer.  The article, “The Side Effect No One Talks About,” is well written and I was happy to share a bit of my own story.  Shout out and thanks to Catherine Brunelle and Terri Wingham.  Each of them suggested the executive director, Sherry Abbott contact me for the article.

That’s all for now.  Stay tuned for Wednesday and I’ll be sure to get a link posted here.

~AnneMarie

 

 

 

 

 

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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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BLOWN AWAY

I am completely blown away by the responses to the survey.  The Good, The Bad, The Ugly and everything in between.

THANK you all and I hope you will keep sharing the project.  I’m a big believer in “there’s no such thing as too much information” whether it is one person’s experience or the collection of information from many people.  There are over 100 responses thus far and I haven’t done much to promote this project.  Yet.

I am All In, fully committed to seeing this through.  The fact that the surveys are being completed now, while I have several irons in the fire, completely unrelated to cancer advocacy, is laying the foundation for what I know I will be doing once all of these fires are extinguished.

I’ve shared on my chemobrain blog some of the challenges I’m dealing with right now.  Close family members need my attention with their own health issues.  Thankfully, my mom is not in that category.  Her bone metastasis is stable.  Fighting for prescription renewals with my new insurance company is huge.  Apparently, this is a theme many of us are experiencing.  I kid you not when I say it took ten days and the Chief Medical Officer of the health insurance company to get involved.  There have been ongoing marital issues that may, one day, be the topic of yet another book.  Let’s just say it would make for a good story, one of those, “you can’t make this shit up” stories.  That appears to be on track for a happier than expected result.

Your responses are honest.  They are raw and there is such power in your words.  As this has started to gather a bit of steam, my mind is off in several directions.  I know there are several clinicians involved in their own projects to explore how they may help us.  We all need to be seated at the same table to change any conversation.  It is not exactly easy to pull up a seat to this table which is why I am determined to seek as many perspectives as I can.  Hopefully, I have created a safe and comfortable space.

So many of you have left me contact information.  I am compelled to (for now at least) offer a blanket and public thanks.  A number of you have addressed your narratives to me, “Hi AnneMarie…..” and I can’t begin to tell you how that makes me feel.  I am deeply grateful that you have trusted me with your stories.  I hope to make the time to respond personally to each of you who left an email address.  That is on a very long To Do list, but in my heart, it is one of my top priorities.  The day to day stuff that I struggle with is completely amok.  It was recently pointed out to me that I have significant amounts of paperwork in every room in my home except the bedroom.  There’s a bit of dark humor in there given the nature of this project.

On a separate and also related note, Happy Valentine’s Day!

With love and gratitude,

AnneMarie

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UPDATE AND THANKS TO CURE DIVA

When did the idea for this project first pop into my head?  I suppose it was during a seminar I attended many months ago.  I am delighted that I was invited to share that moment on the Cure Diva blog in a guest post.

I hope you will take the time to read the post and to see all of the wonderful things happening on the Cure Diva website!

If you found yourself here from a link on the Cure Diva Facebook page, please consider helping me compile our stories.

Peek at the survey.

Like the Facebook page.

Follow the twitter handle.

Read more about what I’m doing and why.

And shop Cure Diva.  Efrat is my very dear friend and she was determined to see her vision come alive.  I’m taking my cue for this project from her.

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UPDATE: 1/23/2014

Some information about who has answered the survey:

Most are married, heterosexual women ranging in age from 31 to 62 years old.

Responses have been received from same sex couples, divorced or widowed women and some who are single and have never been married.

Approximately 20% of the responses have been from women living with metastatic disease.

There are responses from male partners.

There are responses from patients who did not have a cancer diagnosis but required surgical procedures that affected their lives.

The surveys are primarily from the USA and Canada with some responses coming from the UK, France, South America, the Middle East and Australia. The only continent not yet represented is Africa.  Technically, Antarctica, too.

Keep ‘em coming!

And Thank YOU!!!

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