Friday, September 25, 2015

MY REMINDER TO #LiveInspired

Live Inspired.


I'm inspired and I'm also, in a word, stunned.

I'm jaded. There's no such thing as something for nothing in the world where I reside.

That. And I never "win" anything either. No raffles, no pick 4 lotto tickets, nothing. Ever.

Check that. I won those stupid Cancer Olympics. You know. Breast Cancer. It's the one that gets all the attention and soon enough the entire globe is going to be bathed in pink ribbons and when I say the globe, I kid you not. I seem to recall seeing photos at the pyramids in Egypt. This isn't a rant about that.

This is about winning. Or rather, being honored in a way that has me still sitting in a state of shock.

It started with an email. Technically, it must have started with a tweet. From the Apple Store. Apple, whose social media presence is genius. Like the bars in their stores. They have none. Social media presence, I mean. The employees in their stores are always helpful but no social media presence from a company that is so intertwined with the technology that fuels the engine?

I'm big on tweets. Mostly, twitter is my medical place. It's where I engage and learn about new research. It's where I try to offer support to others. It's where I "have a big mouth" which apparently, is not appreciated by the CEO of a certain unnamed organization as I seem to recall in a certain session at a recent science meeting. "Don't listen to the 'social media big mouths' because we are (insert your own thought-not telling the truth, don't know what we're talking about, just big mouths....." And yes, the glance was cast in my direction. I just couldn't discern exactly where the glance was directed. Was it me or was it Lori? Since it was a metastatic disease discussion, I'm guessing me. No one would dare do that to a metastatic patient. I'm only on the fringes by virtue of my advocacy and my mom and all of those I've come to know and love. But no matter and a HUGE digression and no, I'm not naming any more names, either.

Twitter in every day life? Love it. Why? For starters, a few weeks ago, I had to make a trip to the DMV. The dreaded DMV. I had to change the name on my license. Does anyone recall my shock when I learned, at this age, I have been parading around for my entire life thinking my name was AnneMarie, only to learn that my REAL name is Anne. My middle name is Marie. It was in a post 9/11 world that I learned this. I was trying to board an international flight with a passport that correctly showed my name and an airline ticket that included my middle name as part of my first name. The young man at the DMV who fixed my driver's license was wonderful. NYS recently launched a program where it's possible to make an online appointment to minimize the wait. The program works and the young man was a delight. When I left, I sent a tweet to NYS DMV to thank them for the program and offer a shout out to their employee. They replied.

I included the Hyatt in NYC in a tweet recently and they responded using my name. "Looking forward to seeing you, AnneMarie." Health Republic has assisted me a number of times with quick responses when I couldn't resolve issues that had nothing to do with them but still, they jumped in. Yes, a health insurance company. American Airlines? I had a kid stranded in Chicago several months back and THEY replied seeking flight information to get me updates on my kid who spent the night on a chair in the terminal at O'Hare. I even had a jury duty issue with an out of town kid, not the Chicago kid, another one. The town supervisor had the Commissioner of Jurors to call me to resolve the issue.

It works. Social media works. Every one of those snippets of life really happened. To me. So yes, twitter is quite helpful. Unless, of course, you're Apple and don't want to hear about anything in such a public space lest you have to hire a team to answer the tweets. I was pissed over a cracked screen, Apple Care and being told to get at the back of the line for the pleasure of paying extra for Apple Care. To be clear, I didn't want to cut the line, but I thought, Apple Care could perhaps have its own line that didn't eat up THREE solid hours waiting to be helped. All I could do was rant a bit and apparently, and definitely unbeknownst to me, someone WAS paying attention. Not Apple, but someone.

The "someone" was a representative from Consumer Cellular. The message was in the form of an email offering me a new iPhone. They saw I cracked my screen. I started quite incredulously at MY screen. Definitely a hoax. I replied. Figured I'd smoke someone out. No hoax. Quite simply, this is what happened. In honor of their two millionth customer, Consumer Cellular made a TWO MILLION dollar donation to the Knight Cancer Center. To celebrate, they are giving away "little gifts" as part of Consumer Cellular Live Inspired campaign.

Yesterday, THIS happened. A package arrived, I opened it up and snapped a selfie. Since I can NOT stand what I look like in selfies (and no Upstate, I am NOT interested in ANY selfie stick), I'll share that I returned from Sloan Kettering where they did this (routine blood work in advance of my xgeva shot for my crumbling femara bones):

It's just always a blast walking into the facility where I seem to have left my brain in 2006-7 during the course of my chemotherapy. Yes, I put on the smile and pretend it doesn't bother me, but if I'm to be completely honest, I have PTSD flashbacks every time I walk into that building. I see myself in the infusion suite. I remember how I was on the floor in the bathroom all by myself when I realized I wasn't going to make it to the parking lot without hurling. Mostly, what makes me the saddest? The very last time I saw my dad walking, we were walking out of that building together. Days later he would be gone. So yes, sadness. And anxiety.

Doing my best to get the anxiety to controllable levels without grabbing for the last resort anxiety pill, I blasted the music in the car, windows open, beautiful day and I got home ready to lunge for the pill bottle anyway. Sometimes, thankfully very infrequently, the medication is a necessary thing. I grabbed the mail on my way in, trying to remember where I even PUT the damn anxiety medication. 

And then, I opened a package I took from the mailbox that contained this:

It definitely changed my attitude.

Yes, I was joyful. And it's really not about the phone. It's more about the fact that 2M was donated for research and that it was done with little fanfare makes it that much better. And this celebration of gift giving and encouraging people to #LiveInspired, frankly, I'm so inspired by so many. Many who are no longer here, many who push through every day and many who do what they can to help. 

Thank YOU, Consumer Cellular. YOU helped lift me up on a day when I could have easily stayed in a dark place. And yes, I DO love the phone and I am truly grateful for the gift.

And, I LOVE the collage on the LiveInspired page. I see a few of my favorite quotes EVER.

OK, I have to give in on the selfie even though my arms aren't long enough to get the camera far enough from my aging face.......

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Friday, September 18, 2015


I suppose this is going to be a biannual event. Not twice a year but every two years? Why do those words mean two things anyway?? I wrote this on 9/19/11. This blog and my venture into social media was just two months old. Facebook was a means of stalking my kids to make sure they were alright. If I saw a post, I knew they were fine. Might have been heavily partied out, but fine enough to write something that was coherent enough to stop me from worrying. Today, Facebook is where I have medical conversations, research conversations and HIPAA be damned.

I reposted it two years later in 2013.

Here I sit, nine years post mastectomy, technically tomorrow. I can still taste the feelings without even reading what wrote in 2011. So, I'm dusting it off for the second time with a minimal amount of changes.

And yes, the phantom itch? It's still there and my nipples are still in a medical waste pile, disintegrated, I'm sure.

1st Replay, The 2013 preface:
Today, I'm dusting off something I wrote two years ago.  The blog was new, the piece is long.  Seven years ago, EXACTLY seven years ago, I was sitting in the pre-op area at MSKCC awaiting my date with the surgeons who would be performing my mastectomy and beginning my reconstruction.  It's hard to believe it was seven years ago.

In every way, that day was the first step in bringing me to this place.  The events that precipitated my post traumatic growth had begun in April and the permanent alteration of my body was the first major physical, tangible trauma.  It feels like an eternity, it feels like yesterday and in some ways, it feels like it never happened.  Except when they itch.....

From September 19, 2011, a (slightly edited) reflection of 9/19/06

It’s been five years.  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 journey much easier than yours.  You did spare me.  Your experiences taught the researchers how to make things FAR less unpleasant for me. Initially, I was joining your club as a breast cancer patient and then, when you were diagnosed with metastatic disease in 2013, you joined my club when this community embraced its collective arms around you.

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.  I know you are holding my hand through this journey.

And Linda.  You didn’t even get two months of playing The C Card before you were forced to share your limelight 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. Because of my own hang-ups, I say that just 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.  Paraphrasing Lada Gaga in her Howard Stern interview, “We are Italian.”  We are good at the jump in at the first sign of a crisis.  I’m not being slanted towards my ethinicity to the exclusion of others.  I only speak about what I know first hand.  My Jewish friends, Greek friends and pretty much any other group from any other ethnic background have all shared similar experiences in moments of “family crisis.”  Italians and Italian Americans are great hand wringers.  Just sayin……

Five 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.  My recollection of older episodes in my life has much greater clarity than I recall having in the pre CB days.  There’s an upside to 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 that 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.

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.

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 if I am to connect the dots backwards as Steve Jobs once stated, from my vantage point in 2015, I was an empowered patient in 2006. I agonized over my decision and with notes I still have, handwritten in 2006, I know I made a choice based upon the evidence available at the time. I asked all the right questions and in using my highly analytical pre chemo brain, I chose. The choice was right for me.

And that is how I came to find myself at Memorial Hospital 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 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 F’ING 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.

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 saying, “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 most recently that I finally came to terms with The New Normal in The New Body.  And it wasn’t until yesterday, that I properly grieved 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.

Yesterday, I finally gave myself permission to FEEL the loss.  Yesterday, when I felt like crying, I didn’t fight the tears because that's what you do when you win The Pink Ribbon.  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 The Pink People are the lucky ones, the strong ones.  Good cancer, mild chemo, how dare I allow anything other than, It's Fine, I'm Fine crack the facade.   

Yesterday, I FELT everything that I have been shoving aside for too long.

Today, it’s five years which is a milestone.

Tomorrow is officially The Next Chapter.

(This tomorrow, the 2013 version, technically begins the next Seven Year chunk of time.  I hope to be here.  In 2020. Writing about The Second Seven Year Itch.  And I hope the landscape is very different than it is today.  Today, it looks much the same as it's looked for the past 40 years.  At least from my vantage point.  I hope to be instrumental in some small way in facilitating the change.  It's time.)

And this tomorrow, the 2015 version, I'm into the Seven Year Itch and sadly, the landscape hasn't changed much. But I have changed. And the reason this blog has been so quiet is because I've been and continue to be doing many things behind the scenes, trying to help make a difference in any and every way I can.

Yes, I'm still here. 

With love,


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Saturday, September 5, 2015


There are those who will stand and applaud and then, there are those who will be deeply offended. I am in the latter. To be perfect clear, it's important to note this very basic fact. Two separate issues are being mangled together. This is being done by someone with celebrity status. The celebrity would be Kenneth Cole. And the issue would be this billboard.

#AreYouPuttingUsOn Although that is his question, I'm so deeply offended, it has now become mine.

After that question, I'm shaking my head in disgust and shouting at the top of my lungs, #ARE_YOU_KIDDING?????????????????

Words matter. Intertwining words, indeed, emphasizing the words MENTAL ILLNESS using the largest of all fonts to make a bold statement and then including #GunReform is despicable. I understand his outrage at the stupidity that exists from state to state regarding background checks but shouldn't we be more outraged by this.

SOME can access CARE.....

Because the fact is, MOST can NOT access CARE. Even with a limitless supply of money and other resources including connections to those in the upper echelons, quality care for sustained treatment of mental illness is close to non-existent.

Despite laws guaranteeing parity for payment of treatment by health insurers, loopholes are found. And, even if our health insurers are adhering to the mandate, indeed in some cases, going above and beyond as was my experience when attempting to help a friend, quite simply, help is no where to be found.

There are shortages of beds, shortages of doctors, shortages of groups offering specialized care like dialectical behavioral therapy which is an evidence based practice and among one of the very few treatments shown to be effective in the treatment of borderline personality disorder.

Discharge planning from psychiatric hospitals, which, in this state, the very same state where this billboard is hanging is devoid of any real planning. Does "Follow up with your psychiatrist and you are waitlisted for a DBT group" constitute a good plan? I think not.

I live within miles of of the largest city in this country. The population of NYC dwarfs that of LA by more than double and yet, no room at the inn. So there's that.

And then, Mr. Cole makes the case of the need for #GunReform in the same sentence with Mental Illness.

Why isn't there a billboard telling the other side of the story? Where is the billboard decrying the number of people with mental illness who have died in policy custody? Tasered, left to swelter and die in a cell in solitary confinement, taken down and dragged with clearly broken legs, shot dead with hands held high.

Is there an issue with the ease with which guns may be accessed. Yes. That's a problem and it should be addressed. No one should have assault weapons or clips that can fire off hundreds of rounds in seconds. I'm not a gun expert. I just know that if people want rifles or handguns, that is their right unless the constitution is changed. Hollow point bullets and machine guns, not so much. Thorough background checks? Seems that's just logical. The hashtag #GunReform .... go for it. On.Its.Own.Billboard.

Is there also an issue with the way we treat those living with mental illness in this country? Yes. And the fact that the largest mental illness facility in this country is a jail..... that's not okay, either. What are many of the crimes that these people are being jailed for? So called crimes of survival: shoplifting food to eat, seeking shelter by breaking and entering.

As long as Mr. Cole wants to link mental illness to crime with his provocative billboard, I might suggest he tell the rest of the story. I think the number of people with mental illness accessing guns is dwarfed exponentially by the number residing in jails, because treatment is NON existent.

Where is that billboard? Where is the real outrage. I'm tired of the hashtags. It's time for action. It's time for meaningful change. It's time for an open dialogue. It's time to sit at the table with Congressman Tim Murphy and Senator Chris Murphy, both of whom have bills written, a House version and a version for the Senate. It's time to make these bills work. They may not be perfect. They may not suit all. If the possibility exists to change the lives of 25% of the population, directly, and the untold percentage of the population whose lives are affected because their loved one is included in that 25%, it's time.

The billboard has to go. It's feeding stigma, shame and untruths. It's setting back the movement initiated by many fine organizations who are trying to make it okay to talk, to bring change to mind, to be bold like Brandon Marshall and so many others who are speaking out.

I know there are many groups who have written about this and people will polarize. Agree to disagree. Open up a dialogue but make it honest. And keep things where they belong. There are two very distinct problems and they each require their own path to a solution.

Lumping them together as one, in a billboard that diminishes the vast majority of those 40 Million is wrong.

I only have one hashtag about this whole mess.


(Please note: comments are not moderated. Respectful discussion will be tolerated. Mentions of political parties or finger pointing will be removed. Play nicely. Please. ~AnneMarie)

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