Monday, September 19, 2016

How Can It Be TEN Years??

Ten Years. No Breasts. I believe I have shared this post every year. It still feels like it was yesterday and yet, it feels like cancer has been part of my life since, well, forever. Edited in a few places, but mostly, word for word as it originally appeared five years ago.

Today. No day has affected me more than the 19th of September, 2006. Not the days my kids were born, not any stupid anniversary of anything having to do with anyone else either.  This day is about me. It’s about my life. It’s about choices. It’s about fear. It’s about sadness.  It’s about an education that could fill two lifetimes. It’s about learning to self-advocate. It’s about understanding that “solutions create problems.” And, it’s about finally embracing whole-heartedly it’s OK to have a day All About Me. It’s okay if every day is About Me, my dreams, my desires, the life I wish to live. I earned the right.

Kids, I love you (but we’ve already determined neither of you is reading this anyway, so no matter and besides, you already know I will stand behind you unconditionally and if I could, I would move mountains for each of you); mom-I LOVE YOU for paving a path in 1988 when chemotherapy was even more barbaric than it is today and I am appreciative beyond words that your struggles made my treatment much easier than yours. You did spare me. Your experiences taught the researchers how to make things FAR less unpleasant for me.

Dad, I miss you and I am remembering that I made you the messenger when I first set foot into this mess. And I remember the email you wrote to me the day you stood in that room right by my side so we all heard those words in the very same instant. That letter is in a frame. You are the wind beneath my wings.

And Linda. You didn’t even get two months of playing The Cancer Card before you were forced to share the stupid deck of cards with me.  I will never forget how you left work one Thursday morning, five months prior to my surgery and three months prior to my diagnosis simply because I was freaked out about bringing films to a surgeon for review. Only two of you knew what was going on at the time. Only one of you remained by my side for the long haul. And that very same one of you was the single most instrumental person it helping me past my hang-ups. And that same one of you got me off the ledge when my confidence was shattered and my body image was (self) decimated.

That is by no means an all inclusive list. Indeed, it’s primarily a Mostly Excluded List. My entire family rallied by my side.

Ten years ago, I altered my body. Five months after I received The Letter advising me of the “density” that was presumed to be nothing but was worthy of another look, I was waiting to be summoned into an operating room. I have come to realize my short-term memory (more accurately, my working memory, which by the way, IS different from short term memory) has been somewhat uncooperative. That cloud has produced a rainbow. No, cancer isn't a gift or the silver lining of any cloud. The chemobrain mess has made my recollection of older episodes pop into my head with much greater clarity than I recall pre chemobrain. There’s an upside to everything, almost everything. If you look hard enough. If you can REMEMBER to look, that is...

Back at Memorial Hospital, NYC, circa 2006, the opening day of the UN General Assembly is now inextricably connected to me, to my breast cancer and to the decision I made to have a bilateral mastectomy. Our brains have weird ways of connecting things. There are reasons why this UN thing is intertwined with my cancer. It was (unbeknownst to me at the time) the reason why every hotel room on the entire island of Manhattan was occupied. No room at the inn. At any inn. Just a room in Memorial. An operating room. Following by a recovery room. Followed by a semi-private room with a view of the UN building. Today, in the wake of what happened over the weekend, the city should be an utter nightmare with the leaders of every country on the planet, once again, converging on the isle of Manhattan.

This was the third time I was going to be greeted by the operating room staff in less than 60 days. I knew the drill. The pre-op clearance within days of the surgery, the phone calls I could expect the day before, first from the nurse to review all the last minute instructions and then from the scheduling staff so I would know when to arrive. There is nothing pleasant about waiting for the phone to ring. I was jumping out of my skin the entire day.

I don’t think I slept the entire night. I know I had to be up early. I remember jumping in the shower that morning. I stood in the shower taking a long look at Me. My tears were producing far more water than that which was coming from the shower. And I cried in silence. This was a personal moment. It was a moment between me and my body. And, what would be happening in a few short hours was as a result of a choice. My choice. I had clear margins when the surgical biopsy was done. I also had a diagnosis of invasive lobular breast cancer. And that whole family history thing which has just amped up over these past ten years.

I still have the copy of my pathology report where the surgeon drew the box explaining “clean margins” and then placed little dot marks of ink inside the box.  It was when she said, “The question is how do we know there isn’t a dot over here?” and that dot was OUTSIDE the box that my brain began to engage. I knew I needed to start thinking outside of the box about how I wanted to proceed with treatment. And that is how I came to find myself at Memorial Hospital, what most of us refer to as Sloan Kettering or MSKCC, on September 19, 2006.

I don’t recall getting out of the shower. I don’t recall getting dressed. I don’t recall the drive. I don’t recall walking through the underground hallways that connect the garage to the elevator banks. I remember crying in the shower as I stared at my body. I remember feeling the soap and the water on my skin. And the next thing I remember is exiting the elevator to check in on the surgical floor. Those 90 minutes in between, blocked out. Gone.

What happened next is just a jumble of memories. They are all out of order in my brain. This, I am sure has nothing whatsoever to do with chemo brain but is a function of being as scared as I have ever been in my entire life. Fear had me in a chokehold like nothing I could have imagined or anticipated.

I remember changing into what would be my attire for the next several days, The Blue Gown(s). My belongings were in a hospital tote. I remember being escorted to the nuclear medicine area to be injected with more radioactive dye for the sentinel node biopsy that would have to be performed on the good breast. “If something unexpected comes back with the pathology, the only option will be to remove all of the lymph nodes.” I remember how I wanted to punch the nurse for not being as adept at administering the injection as the nurse a few weeks prior. In hindsight, I think I judged her far too harshly. I was a very different patient on this day than I was weeks prior when I was simply have my lymph nodes checked.

I remember how everything was behind schedule that day. I remember the kindness of the young man who was my tour guide between the surgical area and the labs. And I remember sitting and sitting and sitting with the blue gown and the blue socks. I remember seeing Dr. Hot Plastic Surgeon enter the surgical waiting area. He was looking for me. Because I had incisions from two prior, recent surgeries, he wanted to provide the breast surgeon with a roadmap. When he was done making his graffiti marks with a sharpie pen, I officially crossed The Line. After emerging from the graffiti zone and back to the surgical waiting area, I began to tremble. I don’t remember anything else during that long wait. I think, at some point, I must have had a clonopin hidden in my gown because I seem to recall swallowing the pill with no water.

I don’t remember when I was finally called. I don’t remember walking to the operating room. I don’t remember those doors separating the hallowed halls within the surgical area. I don’t remember much of anything upon walking into the OR. I do remember the nice blue pillow that was on the table the prior two times was not there. Instead, there was a horseshoe shaped thing upon which to rest my head. I do remember my mind beginning to race. “They are going to intubate me to do this.”

Before I had a chance to freak out, everyone began to greet me as if we were going to have some grand party. These people were simply at work. I was a visitor to their place of business. And they were being cordial and kind and wanted to make sure I was properly welcomed. No less than 10 people were in that room and every one of them greeted me by name. And the flurry of activity began.

“Blood pressure, cuff, AnneMarie.”

“This is sticky and cold, AnneMarie, I’m sorry.”

“I’m Dr. Feel Good and I’ll be starting to sedate you shortly.” (Ummmm, yeah… couldn’t we just skip right to that part immediately upon my arrival hours prior??)

And finally, the familiar, “Can you spell your first and last name please?” while my wrist was being examined by another person. Just checking.

“Date of birth?”

And then, the dreaded, “What is going to be done today, AnneMarie?”

These people are all extremely soothing and wonderfully kind and display compassion and empathy that I’ve yet to witness in any other place.  But STILL.  I don’t know how I politely replied but my brain was screaming, “LOOK AT THE FUCKING WHITE BOARD THAT TAKES UP THE ENTIRE WALL-IT’S ALL THERE!!!”

And, then I heard a flurry of activity, “AnneMarie, can you hear me? You are in the recovery room. Are you warm enough?” Nurses. Possibly the noblest profession on the planet. The recovery room nurse remained at my bedside and took good care of me. I was groggy and it was already fairly late. I don’t think I sustained two consecutive moments of “awake time” for another ten hours. I remember being wheeled through what felt like gallows. An underground labyrinth-a bumpy road with wobbling wheels. I remember being lifted into a bed. There was an aide who remained at my side in a chair throughout the night. It was 10PM and no, I did not know where my nipples were. And yes, it's been ten long years and I do miss them. My new tattoos are fabulous and there will be photos shortly, but I miss what I was born with. Those parts. I miss them. Still.

I remember waking that next morning surrounded by no less than six doctors. That’s what happens in a teaching hospital. And, I remember I was not bound.   The doctor gently opened the Velcro on the surgical bra to change the gauze and check the incisions. Nothing was taped to my skin. The gauze was loose.  The doctor asked me if I wanted to look. I just remember staring straight at the ceiling and I remember the tears falling on the pillow. I didn’t even respond.

The second round of doctors arrived about an hour later. Seven AM and six different doctors. I remember there was a female doctor and I remember she was gently trying to suggest I look at my mutilated body. And again, the tears fell. This time, I remember mumbling, “I can’t.”

I do believe the next doctor who came into the room, did not arrive with an entourage. She was soft spoken and she was kind and in reflecting, I think she was sent in for the sole purpose of my psychological well being. The sooner you look, the easier it is to jump that first hurdle. I still hear her words, “I think you will be surprised, you should look.” Through streaming tears, I looked. I didn’t realize they would begin filling the tissue expanders in the operating room. Yes, I was surprised I didn’t look like a boy.

But I was more saddened by the loss of what was part of me. It wasn’t until five years after the surgery that I finally began to come to terms with The New Normal in The New Body. It took me five years to properly grieve my loss. I am now and was then, surrounded by a large and loving family. In that moment, I never felt more lost or more alone.

Five years ago, I finally gave myself permission to FEEL the loss. When I felt like crying, I didn’t fight the tears because that's what you do when you have strong shoulders, when you minimize everything, when you think you can just handle anything and everything life throws your way. I cried softly, I sobbed loudly, I screamed, I tried my feel good music, I tried yoga and ultimately, I just had the funeral I never held because, after all, the world has been telling me forEVER that I should be grateful. Good cancer, mild chemo, how dare I allow anything other than, It's Fine, I'm Fine crack the facade.   

Five years ago, I FELT everything that I had been shoving aside for too long. And I've been gentle with myself for the next five and now I am at the ten year mark. And in these five years I've learned that I will always be gentle with myself. I will always honor my feelings. I will never turn away from that which brings me pain because pain it a part of life. It makes the joyful moments so much sweeter.

And I've learned that I am enough. I am good enough. I am capable enough. I am strong enough and when I am weak, that's okay, too. And I'm learning now, too, to stand on my own two feet. Only recently have I realized this brought me to my knees and I've been on my knees for at least ten years. I'm standing. My ankles may be a little wobbly and there are many pieces still being glued together but I'm whole again. At long last, I'm me. Finally, I AM.

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  1. Coming up on 2 years for me. Just scheduled the appointment for tattoos.
    I know I haven't grieved. I'm still so furious about the whole thing (the 8 surgeries, the near-fatal hemorrhage, the infections, c. diff 3 times, horrible body image, the whole thing I've already commented one) that I can't see straight. And of course the AI doesn't help that.
    I suppose it's encouraging that you feel like you have come through it. I know this blog is about you, not me, so I feel selfish when I comment about how your posts make me feel, and what they make me think of. But, they do help me sort out a bit how I feel, as well as validating those feelings.


    1. Cathy,
      You should NEVER feel "selfish" for sharing your feelings because that's what this blog was all about from the very beginning. My goal was always to make just one person feels less alone or afraid or just hopefully, that I would eb able to write things that others could relate to. I appreciate your comments more than I can say. What you may think is somehow selfish, is really a gift (from you to me) and to everyone else who reads through what I write and what is in the comments. It's how we all learn. And the AI... yeah... doesn't help at all. Much Much love. xoxox

  2. Anne Marie, I just finished reading this and am remembering all you have been through. I would have walked every step in your shoes if I could have done it for you or your siblings. I still grieve for you, more than I ever did for myself. Just keep putting one foot in front of the other and your life will play out as it is supposed to. Keep up all of your advocacy and may God Bless You for all that you keep doing.
    Love, Mom xoxo

    1. I can't say anything except I love you, mom. This whole advocacy aspect of what I do makes me feel like I am taking some sort of control over what we both know, we have NO control over at all.

  3. Wow! 10 years is a big milestone. You are good enough, smart enough and it is ok to be weak. Cancer is a rough road. Your post is beautifully written. <3

    1. I missed you a couple of weeks ago. And, have been quite worried about you, too. xoxoxo

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  5. I sorry to hear that you as well have gone through hell and back. I was dx in 2013 stage 3 breast cancer. Through the whole damn ordeal I almost died four times but I survived. I had aggressive chemo given to me and I'm here now three years later full of sadness anger depression. I went back to work worked for a year and a half and I found myself having a difficult time multitasking did not work well under pressure couldn't concentrate can't remember things can't do simple math I have a difficult time being organized or remembering things. Before I got sick I was fine mentally. My body hurts my muscles my bones I had arthritis and after my treatment my arthritis got worse my knees were affected very much they turned to 70 year old knees and I'm only 47 I had a left knee replacement April 8 and this Friday I'm having my right knee replaced everything in my body hurts. I thought it was that my chemo was so strong that it would just take time for me to get my old self back. But I never returned being the person I was before. I stopped working cause my anxiety is horrible I've falling into a depression that I can't get out of. It's been one surgery after another. I was 3 years cancer free in September. But I feel that I can't find myself. I just want to know if this is happened to any of you? I'm going to Couseling I'm trying to accept who I am now but having a difficult time. I haven't been able to get my reconstruction done due to other surgeries I have needed hoping to get it next year. I just feel lost confused depressed. I'm stressed cause I thought the old me would come back and I just feel like I'm getting worse mentally and physically. I've been researching chemo treatment and the side affects I was hoping all these symptoms side affects would have gone away by now but I just feel I'm getting worse. Is this normal I've closed out myself socially I don't like to get on social media anymore fb Instagram etc I'm to myself just at home with my family. My daugthers notice the change and they don't even understand me. Because before I was happy out going and today or since my treatment 3 years ago I'm a totally different person. Sorry but I couldn't sleep and I just need to know is there something wrong with me or does chemo really affect you this bad. Trying to accept who I am today is being difficult. GOD bless you all.


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