Wednesday, July 27, 2016

The Line Was Drawn 10 Years Ago

It's snippets. The movie reel playing in my head today is playing in snippets.

It was the night before. July 26, 2006.

I was a wreck. My surgical biopsy was one week earlier. I was told I could call for results. When I began to feel like I was being blown off by the office staff, my suspicious mind took over.

It would later turn out I was correct. I saw the date of the pathology report and the time that it was released electronically to the surgeon. She knew on July 25. I wouldn't find out until today. Ten years ago, on this date.

My mom was adamant about being there, even if I had her remain in the waiting room. Who could do that to their mother? I was fully prepared to do exactly that. In a typical mother/daughter dance, I was protecting her and she was blaming herself for my cancer diagnosis.

I hear her through her tears, "Is this the legacy I'm leaving to my daughters?" My heart was shattered and my brain was trying to process the shock all in the same moment.

My spouse had no intention of being there. He thought I was having a bandage removed and a surgical wound checked. He was firmly living in the land of denial. He believed, statistically, I would be ok. "Nine times out of ten, these things are nothing." I'm here to tell you it sucks to fall on the short side of the statistic. Can I ever fall on the short side of a good statistic, like, oh, I don't know, hitting lotto?

Even when you know you are getting bad news, or so you think, until the words are uttered, I tend to reside on the other side of the line in the sand. There is still a piece of me that, while I may know deep in my heart what is coming, can't grasp anything until it's crammed down my throat.

Nothing quite crams down one's throat like the words, "You have cancer."

Because I had a group of wonderful women surrounding me, women I began to engage with in 2003 in an online forum, I have what amounts to a full journal of everything that went on, beginning in April of 2006 when my mammogram findings were deemed to be suspicious.

There are entries along every step of the way. I found myself in a funk as I began to read some of them the other night. In that space, we have shared joy, triumph, tragedy, brainstormed, looked at issues from seven diverse points of view, we held each other up, we performed essential slap therapy when necessary, we virtually hugged and we still maintain contact today. We were social before "social" was what it is today. Trailblazers. And friends with whom I share a bond that will never be broken. We've been part of each others' lives for thirteen years.

In reading some of the things I'd rather have forgotten, it helps me today. I'm struggling with many different things and seeing some of those very same issues in play ten years ago, when I was at one of the lowest moments in my life? It forces me to pause. It forces me to take a long hard look at many things and be the change that I wish to see by making the changes in my life, albeit a decade later than I should have.

Cancer may be a team sport, but it is a solo journey. I have relied upon myself throughout this entire process. I have proof that I was empowered and asking good questions. Date stamped proof. I have what I need to realize how I agonized over my decisions. And I did. I haven't a single regret.

And I live with the words of my beloved grandmother, words she wrote in my 8th grade "autograph book" when I graduated from Catholic School.

Love many, trust few, learn to paddle your own canoe.

To which I say.

I do. Love, that is. Not only many, but deeply.

Trust? Yes, few. In fact, very few. For many reasons not the least of which is the fact that I was betrayed by my own body.

And I am. Paddling. Furiously. And it can be exhausting at times.

I hope to have a moment to pull some snippets of what I wrote back as this was happening in 2006. Who knew I was giving myself the greatest gift of all by writing to my friends.

I've spent a few days with a lump in my throat, at times with tears spilling. This doesn't go away. The pain lingers. There are moments. And I'm here to validate the moments of every single one of you who are on this page with me.

How long ago matters little. It can be in your face, bringing up the feelings of terror, in a single instant.

This isn't going away any time soon. Likely never. The fallout lives on. Likely forEVER. To be clear, I don't live in the land of misery but I don't ignore those feelings when them come. I process. I feel. And I move forward. Pain is a part of life. How we choose to incorporate it into our being is the only thing we can control.

Sadly, the deaths continue across all cancer types.

I'm here to say be gentle with yourself, be kind to others whose views of their experience may differ from yours. It's time to start listening more, it's time to feel the urgency of those whose needs are greatest, it's time to stop sitting in judgement. It's just time.

Because at the end of the day, I'll never stop repeating my mantra.

There is no right way to do cancer, there's just the way that works for you.

And I support you. In whatever form that takes. Unconditionally.

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Monday, July 18, 2016

My date with NED, 10 years ago-Today.

Tomorrow, this blog will be live for five years. Five years ago, I stepped into my own private social media space - this blog, my social media home. Five years ago, I began to fall in love over and over again, and over these past five years, my heart has been broken over and over AND OVER again. Dozens of times.

Tomorrow is also, more importantly and with much more profound impact, the ninth anniversary of my dad's death. He was just 71. I am still hurt. I still feel like we were robbed of many years. On July 3rd, he would have been 80 years old. We should have been having a grand celebration. Instead, I spent the day in quiet reflection.

My life, in many ways is a tangled and epic mess. Not many of the external things, those things that are beyond my control have changed. What has changed is me. I'm bolder, I've learned much and I continue to learn each and every day. I choose joy over despair, even in my darkest moments. I choose love over indifference, even when I feel pangs that resemble hate that may lead me on a path toward indifference.

I do, however, still choose anger and I seem to have no problem expressing it at times. What I have chosen not to do, is cloak myself in that anger, or use it as a blanket of self-righteousness. Instead, I realize anger must be released and if I feel it, its wrath is going to be unleashed. Sometimes it's constructive, sometimes, I could do a better job of expressing my anger or identifying the anger as some other emotion. Perhaps I'm disappointed and it's disguised itself as anger. Perhaps I'm terrified and again, the mask of anger blinds me to the fact that I'm in a moment of fear.

That was a total sidebar and a complete distraction from what I wish to share today. Today, you see, is one of those cancer anniversaries, a cancerversary. I hate that this disease has spawned its very own language filled with many idioms. I imagine, technically, today is the day I can say I am Ten Years NED. I didn't know that ten years ago. I wouldn't hear the word cancer until July 27th but it was today that the cells were removed from my body. Three months prior, in April of 2006, I had a suspicious mammogram, a number of biopsies which ultimately bought me the golden admission ticket.

I wrote this piece on July 18, 2012. It was posted here. I've made some changes and added a few comments but today, I am honoring myself, my feelings, my life after a cancer diagnosis.

First posted, almost identically, July 18, 2012:

Ironically, and this really had no bearing on the timing of making this blog public, TEN years ago today, July 18, 2006, I made my way into an operating room at Memorial Sloan Kettering Cancer Center for the very first time. I was not nervous. I was having a surgical biopsy. However, in my mind, the word biopsy wasn't really part of the language of the day. I had atypical cells removed from a core biopsy and to quote my rock star radiologist, "We don't leave abnormal cells in anyone's body."

That was my frame of mind. That is how I skipped into the operating room, greeted by my rock star breast surgeon. There was no fear when I climbed on to the operating table. Yes, MSK is one of the hospitals where you walk into the operating room. I was asked my name and date of birth by at least six people while someone else was reading the band on my wrist and yet a third person was looking at my chart. Patient safety and medical errors are high priority at that hospital. I knew nothing of this advocacy gig, nothing of self-advocacy aside from the words spoken to me by the radiologist who told me of the abnormal cells, surgery needed, surgeon has better drugs and "Be Your OWN Advocate."

As I was welcomed to the party, I was asked, "What are you having done today, AnneMarie." I was at Spa Sloan and I should have replied, "single process touch up and a mani-pedi while the dye is doing its magic." Instead, I heard the words but couldn't recognize my own voice. As I was responding in dutiful fashion, my eyes caught a glimpse of a HUGE white board. I uttered the words surgical biopsy but everything began to spin as I saw the word lumpectomy plastered across that white board.  Can't blame the spinning room on the anesthesia, either.... they don't touch you with a single mind altering substance until all of the questions are answered. The spinning room was because suddenly, I was in a cancer hospital, in an operating room, apparently having a lumpectomy. Somewhere deep inside, I knew I was headed down a lonely road. Despite a very large, exceptionally supportive and wonderfully loving family, while cancer may be a team sport with the sheer number of doctors and medical professionals in the game, cancer IS the ultimate solo journey. That was six  ten years ago. Today.

And one five years ago, I was anticipating the launch of this blog. I wonder if I even realized today was biopsy day.  I doubt it. I was anxious to see this thing go live. I was curious if anyone would even realize it was here. Would I attain the one goal I set for myself?  Validate just one person. Would anyone even read my nonsensical tales of how my brain seemed to have taken a permanent vacation? When the first comment appeared, and unlike Julie and Julia, it was NOT from my mom, I achieved what I set out to do. It was a short thank you. Ironically, the comment was made on July 27th. The Cancer Chasm Date. Sherry, where ever you are..... THANK you.

The rest? I'm not going to bore anyone with the details of every single thing that has happened in one year. My life took a left turn and I turned left and just went with it. If July 2010 through July 2011 was possibly one of the worst periods in my life, BAR NONE, these past twelve months have more than made up for the previous twelve. I found a voice. My voice. I pursued that which stirred a passion deep from within and it has nothing to do with shades of grey or anything else outside of myself. I am thankful for a wonderful group of people who have become friends. I've met quite a few people in the 3D world. We've stepped out of our computers and into cafes or meetings or the homes of friends. I've felt a kinship previously unknown to me. I have a sense of purpose. Real purpose.

To make a difference
To lend an ear
To steady a step
To hold a hand
To dry a tear
To laugh
To cry
To speak softly with kindness
To shout with outrage

To be a Fearless Friend

Simply Just Be


Honoring my feelings no matter where they are on the emotional spectrum. Hopefully acting in a respectful manner whether I'm using my voice or communicating via my printed words. Agreeing to disagree. Being true to myself first. Standing firmly in my beliefs. Never losing sight of the big picture. Realizing that goals may be achieved incrementally and that's okay.*** Keeping a sense of idealism but acting from a place of realistic expectations.

***Note: incremental goals are okay, incremental research has gotta go. It's now four years later, and I don't think I've seen an accumulation of enough incremental anything to make a real difference. Plus, when I look at the post from 2012, I see comments from a number of people. Two of them, each of them very special to me, are no longer here. And yes, there's hurt and anger which bubbled up as I was preparing to write this post today, in 2016.

If you've joined me in this adventure, thank you. I feel the support. It motivates me each day to do more, to be better, and to bask in the glow of a favorite quote:

It's never to late to become who you might have been.

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