Thursday, October 19, 2017

Grief is Just Messy Love

"Grief is just messy love."

Last night, those words were spoken to me by someone I hold very dearly. Shortly before hearing that profoundly simple, yet oh so powerful statement, I nodded in agreement when another person, someone I love just as dearly stated that 2017 just sucked in the scheme of life. I concurred. I also inserted a four letter word, you know, the one that starts with an F and begs the purchase of just one vowel.

Quite simply, I'm still grieving Lori's death and in so many ways, I'm near certain that I will live with this grief for the rest of my days. Lori and I had this thing going on. She got it. She got me. There are about a million things that happen in the course of a day when I still grab my phone to send her a text. No long message was ever necessary. A phrase, perhaps a sentence or, in the rarest of cases maybe two, and she knew what I was trying to say. More than that, she knew how to ground me, frequently with little more than a word or two.

There have been and there continue to be many distractions. I've had commitments to different projects and I fulfill them to the best of my ability. I swear she'd send a lightning bolt to my head if she knew I was rolled up on the sofa with a blanket over my head allowing the grief to consume every moment of my life.

I've had life issues that would shatter the best seismographs known to man.

There was the unexpected death of another very dear friend and someone who had my back throughout the current legal wranglings that are ongoing. That happened just weeks before I learned that Lori's disease could no longer be controlled by any of the available drugs or therapies known to wo(man). I haven't had more than a second to even attempt to process that grief.

Mom's disease is stable on scans but bloodwork results have spurred action on the part of our oncologist. Ibrance was added to her treatment protocol. First, it was about her ridiculously high co-pay and getting that taken care of and then, it was about her tolerance for the initial dose. The jury is still out but she did just complete the necessary three weeks on the current, one step down dose and it seems this will be ok for her.

There was a 12-day hospitalization of a loved one tossed into the mix, and the havoc that wreaked, both physically running back and forth to be there within the both of the one-hour blocks of allotted visiting time and moreover, emotionally, advocating for the patient because it's what I do. That episode, I can state without hesitation, shattered my life seismograph alongside the way the whole episode was shattering my heart in every moment of every day. I witnessed things that were just plain wrong and in some cases, downright awful. It should surprise no one that an eight-page letter was drafted and sent to both the head of the hospital and the CEO of the entire health system. What surprised me was the immediate response of their social media team when my frustration bubbled over the top. And what surprised me further was yesterday morning's phone call in response to my letter, inviting me to sit down with top-level hospital administration. Although my letter was written with my loved one in mind, it was also on behalf of other things I saw that troubled me right to my core. If no one speaks, how will they know about the things I saw, who will take action for systemic change if no one realizes there is an immediate need for such change. I only asked that I be invited to join them in future discussions, to provide a patient/loved-one perspective, which will I hope help to improve communication among staff and with patients.

Then, there is this messy divorce. Because the legal matters are ongoing, it's really not appropriate for me to discuss any of that in more than a most superficial manner. I'll just say this. When someone admits to cheating for more than half of a marriage, how damn disingenuous can they be to fight, vigorously and scurrilously at that, over a fair division of marital assets. Time is too precious and having had more than a decade stolen before I realized I was being duped, I wonder, how does that person look in a mirror knowing this legal mess is stealing yet more time. That could make my blood boil, yet I won't allow it to do that. I simply deal with what is being hurled my way in a practical manner, always remembering that, above all, my focus must remain on self-protection. My future well-being rests in the outcome of the divorce settlement. I know I'm standing on a foundation of truth which is being obscured by the clouds of lies, but I have to remain confident that truth will prevail. Unlike some, who like to refer to versions of the truth, I say the truth doesn't have versions. Something is either true, or it's not. Hearing the words "version of the truth" is possibly one of the most oxymoronic phrases I've ever heard. But that's just me.

Emotionally, I checked-out fully and completely early this year when the games became clear, when it became clearer still that the lies would continue throughout these proceedings, when I saw the smear campaign that would be ongoing, when the only satisfaction acceptable to that person would be my utter emotional destruction. The thing is, my emotional angst crippled me a long time ago. I don't hate. I just realize I was living a lie, one I wasn't aware of at the time. I was married. I was committed. The other person wasn't. Today, I feel what I know is the opposite of love. Total indifference. I've wiped away everything, knowing even in what I believed were good times, it was never real. I see the text on my phone, the familiar "Pfffft" which was Lori's response when she wanted me to remember, it's all bullshit, it's not worth your energy, it's little more than a bump in the road, and above all, it was her way of letting me know, "You got this. You SOOOO got this." So, to that situation, I say Pffffft. Life goes on. And in the case of the book of my marriage, life has already gone on even if these divorce proceedings linger for years as I suspect they might.

Too much has already been stolen for me to allow this any more time than it requires of me. Some of us take longer to learn the lessons in any situation, but the important thing is in learning the lesson. I've learned. And I matter. In fact, I matter most of all. If I allow myself to sink into this quagmire, I'm giving my power to others and that will never happen again. Like a kid, I think to myself, "I'm the boss of me." And yes, it really is just that simple.

So yes, I'm grappling with a big bag of shit as my buddy Jack referred to this collective mess, and he has reminded me more times than I can recall, encouraging me not to let that big bag consume me. While so much of 2017 has been an amended version of that book, retitled for my life as AnneMarie's Terrible, Horrible No Good Very Bad (and totally fucked up) YEAR, I wouldn't trade my life for anyone else's because the good things have been that great. They too have shattered that seismograph in the magnitude of their greatness, and my ocean oasis, the place I now call home, has been a source of great healing.

And then, there's this. A memory I'll treasure forever. The video companion to the Cancer Today Magazine cover story of the advocacy efforts of Lori and me. When I need a gentle reminder or a giant nudge, I just go to the video tape. This is a gift I'll cherish forever. How could we have known in that moment of this is us, together, Lori vibrant and alive and engaged, it would be just four short months before I would be standing at her grave. Yes, grief is indeed just messy love. And what I know of love: real love, deep love, true love? It never leaves our hearts. It remains in that special place for all eternity.


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Tuesday, September 19, 2017

MASTECTOMY MEMORIES, AN ANNIVERSARY OF SORTS...

Over the past several days, I've driven on the roadways near my home passing the all too familiar signs : "Expect East Side Closures, UN General Assembly." I've listened to the news reporters anticipating this meeting, I've watched as items hit my news feed. And yet, for the past ten years, when I hear the words, "opening of the UN General Assembly," I am immediately brought back to this time in 2006.

I believe I have shared this post every year since I launched this blog. It still feels like it was yesterday and by the same token, it feels like cancer has been part of my life since, well, forever.

Edits in a few places, additions in others, that I would not, simply could not share, until I made the decision to end my marriage of nearly 25 years, but mostly, word for word as it originally appeared when I first launched this blog over six years ago, my memories of Mastectomy Day:

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. And when I first wrote this, you were still an early stage patient, approaching that magic five year mark which we now know, isn't really too magical. As you navigate the metastatic maze, I'm beside you every step of the way.

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. "You have cancer." The words that sucked the oxygen from an already overcrowded exam room. That letter is in a frame. You are, and will always be 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. And that one, was you Linda, my forever friend, my sister, my confidante, and the person who was squarely placed in the midst of my current divorce mess by a man that I don't think I ever knew. He tried to break us, but we proved that what binds us together is stronger than what any person can ever do, or attempt to do, to destroy those bonds of deep friendship. My love is deeper than the ocean upon which I gaze, each and every day, in my beautiful and peaceful new home, my oasis.

That is by no means an all inclusive list. Indeed, it’s primarily a Mostly Excluded List. My entire family rallied by my side. And this was written to remember 2006, and written long before the many dozens of people who have since come into my life, lifting me to heights I never dreamed possible, all thanks to what began from this silly little blog.

Eleven 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. For some of us, there’s an upside to things, almost everything. If you look hard enough. If you can REMEMBER to look, that is... and I've since come to understand there is a science to this. It's called post-traumatic growth but that's a post for another day.

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, the city is likely an utter traffic nightmare with the leaders of every country on the planet, once again, converging on the isle of Manhattan.

September 19, 2006. This would be 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.

And that entire day, I was also still working in my office from my home. Running the administrative and financial side of a mid-size commercial construction company, and tying up all loose ends. I think about that now, eleven years later, and realize, I should have known my marriage was already unraveled. Why was I still tying up loose ends? I knew what needed to be done weeks before, but even with a cancer diagnosis, staring down the face of a mastectomy, I was preparing reports until well past 3PM. There was a series of endless arguments with a man who supposedly loved me and claimed to be worried about me, yet it wasn't until the eleventh hour, that he finally listened to what I was saying. I would be in no shape to handle payroll within four days of this surgery. I can still recall the words rolling off his tongue, and they still sting if I allow myself to go there. "Women get boob jobs every day, why are you making such a big deal out of this?" Today, at the eleven year mark, I wonder how little confidence I had in myself, how I allowed myself to believe the horrible lies he spoke, how I minimized every feeling, and how grateful I am that I finally stepped from behind those shadows to allow myself to become the woman I am today. Strong, confident and free. But eleven years ago, I was still grappling with the how and the why of a shocking and yet not, cancer diagnosis and a partner who somehow made this all about him and what was best and easiest for him

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 on the other side.

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.

Although I only recall these snippets, knowing today how little I was supported throughout the entire process, that day eleven years ago was likely no different. My sense is that I was dealing with impatient pacing, visits to the desk to demand answers for the delay. I don't recall a single human touch. Not the gentle stroke of a hand perhaps brushing back my hair, or reaching out to hold mine. Not even for a second. 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 eleven long years and I do miss them. My new tattoos are fabulous, 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.

Six 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 buy into the cruel words couched as encouragement when it's not encouragement you need, but rather validation and a soft shoulder upon which to cry or someone else's strong shoulder upon which to lean, 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, and particularly the one person who should have helped me honor my true feelings, 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.

Six years ago, I FELT everything that I had been shoving aside for too long. And I've been gentle with myself for these past six years and now I am at the eleven year mark. Over these past six years I've finally embraced 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. I now stand firmly in my beliefs. I make sure to take care of myself, because if I've learned nothing else, I've been forced to learn that no one is going to care for me or about me, with what's best for me as their touchstone, as well as I will care for myself. And I'm learning now, too, to stand on my own two feet. Only recently have I realized how cancer and the fallout brought me to my knees, and I've been on my knees for far longer than the eleven years since my diagnosis. Today, however, I'm standing. My ankles were a little wobbly for a bit too long, and there are many pieces still being glued together but today, I'm whole again. For the first time in who even remembers.

My life is beginning again, forget about a new chapter.... this is a whole new book and for the first time, I'm flying solo. And I'm comfortable and happy with the whole thing.

At long last, I'm me. Finally, I AM.


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Tuesday, July 25, 2017

A FAREWELL, and A Love Story

This was written on Sunday morning before I went to see Lori. Please hold her and her family close in thought.

It's time for me to say goodbye to my friend. My heart is as heavy as its ever been and yet, it is so full of love. The depth of that love is limitless and that love will live on forever, despite the fact that our days together on this earth are coming to an end.

Lori isn't just my friend, she's my soul sister in every sense of the word. I have been carried from the fires of hell by the sheer force of Lori's love and concern, her fierce protective nature, her persistence in demanding a better life for me. She saw my future when I was too blinded to see much of anything. As I spun out of control, Lori, living with a terminal illness, was the one who remained calm and focused. It was Lori who guided me, gently at times, and forcefully when necessary to the beautiful place where I find myself today.

I closed a chapter that should have been closed long ago and Lori was instrumental in helping me turn the page. She knew exactly what to say, when to say it and how to phrase her words such that I would hear the message, and be compelled to take action.

And today, my heart is shattered in ways I could never have imagined possible.

Most recently, I was describing our friendship, really, our "love affair" and I expressed how I believe there are those who might live ten lifetimes and never quite experience what we share. Each of us quick to credit the other, each quicker to jump in to help, each rolling up our sleeves to make things happen. We sense each other. We finish each others thoughts, as if we share one brain. Some of those with whom we've had the honor to work beside have often joked that it's like they are hearing things in stereo. The biggest difference is my tendency to take forever to formulate my thought when Lori very quickly and succinctly captures the essence of the moment in a simple phrase.

This always, and still, amazes me. I can't count the number of times I'd simply remark, "Yup, what SHE said!" Those closest to us know how this works and just laugh. They know. They know, for the most part, what is said by one of us, is meant by both of us. On those rare times we didn't agree, there was an uncanny ability for us to discuss our points of view without ever going off into the proverbial weeks. We discussed the topic, we listened and we both learned. Lori might argue with me, but I'd say I learned far more than I ever "taught" yet, there was never a competition. Not. EVER.

Lori helped me be the best version of myself I can be. She laughed with me, she cried with me, she lifted me to do things I never believed I could do. She knew. She saw what I couldn't. She assured me I could and I followed her lead, embraced her suggestions with absolute blind faith and total trust, safe in the knowledge that she would never let me fall. And, she never did.

When I met Lori online, she was in the midst of watching climbing tumor markers, waiting for a diagnosis of metastatic disease. It would finally happen shortly after we began having private conversations outside of the public social media circles where we originally connected. How grateful I am for the visions of Alicia and Jody to build a twitter community around the #BCSM hashtag, and how grateful too, for Dr. Attai who embraced the hashtag from its inception, to help it become, not only a place of support but also a place that all could turn for accurate and reliable information.

I am her #FearlessFriend. There have been more than a handful of times I believed myself to be nothing more than a Shitty Cancer Friend, doing all of the things I knew NOT to do. I would find myself crying over the circumstances surrounding setbacks, and progression, and all of the other lousy things that occur along the disease trajectory for those living with metastatic breast cancer. Very matter of factly, she would state, "Sweetie, but we always knew this day would come."

Today, there is no room for the Shitty Cancer Friend. Today, I am fearless. Today, I will sit beside her, holding her hand, letting her know how deeply she is loved, saying goodbye for what will likely be the last time we will be sitting side by side. I will let her know I will preserve her legacy, make sure she is comforted in the knowledge that her legacy will live on forever, and most importantly, that her son and her husband will always know she didn't surrender to this disease, she didn't give up, she didn't stop fighting, she's not a warrior who lost a battle. She's a woman who lived a full and beautiful life. She's a woman who fully embraced every opportunity, who made a difference in the lives of more people than she wants to believe she helped, who spoke out against the things she knew to be wrong without ever alienating anyone.

I will surround her with love and support. And I will wish her Godspeed as she closes this chapter of her mortal life. And I will assure her over and over again, that I will pick up everything that she left unfinished and see it through for her. All of it. Whatever is needed. Because she would do that, and oh so more, if the table was reversed.

Cancer doesn't play fair. It's cruel and it's relentless and we are nothing more than pawns being picked off, or knocked down at will. I will continue to push for you, my love. I will do whatever I can to make sure everything is (almost) exactly as you would have wanted. I'll do my best.

I will miss you, Lori. But then, I didn't have to say that.... Of Course You Know That.

I will love you always, and always, I will look to you for guidance, for answers, for help.... for everything. Nothing will change for me, except I'll be seeking answers, instead of from a text response or a ringing phone, I'll search for the answers inside my heart where you will live forever. A piece of it is gone, and it will never be filled again. It belongs to you as it has since the moment we met, and it will belong to you for the rest of my days.






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Sunday, March 19, 2017

COMMUNICATING WITH A CHEMOBRAIN

As some of you may have read in my prior post, I'm undergoing a rather massive life change. This, however, is not about that. At least not directly. Actually, I believe it goes right back to the beginning. To the reason I launched this blog. To talk about the silliness of chemobrain.

Except, this is not going to be about silliness. It's going to be about the difficulties I experience when I'm communicating in real time and what happens when conversations become serious and important. To say that there has been lots of important communication in recent months barely scratches the surface. Plenty of people get very frustrated when they try to communicate with me because it has become too easy for me to meander into the weeds, and then, get stuck in those weeds. This becomes a bigger issue when the conversation demands I return to the original statement. Without being guided out of those proverbial weeds and reminded of that which has already flown out of my mind, this is a problem.

The quick primer. We have long term memories and short term memories. For me, long term memories seem to have taken less of a hit than my short term memories. Many of my long term memories seem to have become more vivid with time. Is this because my brain has more free space because I'm dropping other memories? No clue. I read the research. I know different parts of the brain have different functions so I can't state that the increased clarity in my very old memories is for any reason at all. No science, therefore, no speculation or suggestions. Just an observation.

Sometimes, I am able to recall in great deal an event that occurred in recent days or weeks. Sometimes, it's as if the event never even happened. Other times, it crystallizes and when that happens, fragments of the crystal may fall off the memory. Since the short term memories are frequently what builds on the day to day responsibilities, this can be a real problem. Perhaps this is best explained like this. I might have had a discussion with someone, promised I would have something done, wrote it down, buried the "to do" list with a bunch of other things and a snippet of that memory jolts back into my brain. What happens next is I turn all of my paperwork upside looking for the note to remember exactly what I was supposed to be doing.

Then, there is working memory. Working memory is what is happening in real time, right now. As I'm typing this post and trying to capture the thoughts in my head to put them down on paper. I journal ALOT. I don't want to lose important snippets of things. I write notes. Also, ALOT. I try to do this when I'm on a conference call or really, any type of call that is of importance, whether it involves the work I am doing or for a personal matter that must be brought to an acceptable resolution. If I am sitting in a meeting, and I wish to ask a question, I write notes and I frequently write out the question before ever lifting my hand to indicate that I'd like to ask something of the speaker.

I haven't read much of the most recent research, primarily because there isn't anything that I've seen that is going to change the circumstances for me in this moment. It's not that I don't care, because I care deeply. It's just that there are only so many hours in a day and when it's already taking eight hours to accomplish what should be done in under three hours, life can be a challenge. With that caveat, everything about chemobrain was pointing to working memory and those so called "work around solutions." Use your phone calendar for EVERYTHING. Keep To Do lists (not helpful, I currently have about six, four of which I can't locate). Keep your work area tidy (also not helpful if I'm forced to switch gears quickly, things pile on top of each other). Plenty of others, but since that's not the reason for this post, I'll leave that right there.

The absolute WORST thing that can happen when someone lives with this shitty condition is to badger them during a conversation. I know that people, even people who know the problem exists, can get very frustrated when trying to carry on a conversation. I know that, like mental illness, chemobrain is a disease of the brain in some form or another. In other words, even though others may have accepted this, or say they understand, there may be far too times, they truly don't understand. And honestly, I get it. There's no pill, there's no surgery, there's not even therapy interventions that have shown any promise. When you can't produce a medication, or show the surgical scar, or demand your therapy notes as proof, we may be dismissed as having "convenient" memory lapses, or even worse, of outright lying.

Instead of calmly saying, "Don't you recall saying this....." let me give anyone who is living with a person suffering with chemobrain a word of advice. Shouting, making accusations, demanding responses is not only unhelpful, on many levels it's cruel. We get the frustration you are feeling and trust me, our frustration is on the same plane as yours. I'm trying not to make this into a competition. In the spirit of understanding both persons are feeling the frustration, I don't want to say I'm in worse shape because I have a disability. I will say that I feel like I am at a terrible disadvantage when conversations are necessary for clarification and I'm not given the time to pause, truly understand that we are on the same page and then respond, AND HERE's the KEY... to the best of my ability and to the best of my recollection in that moment. Sometimes, it will be hours later and I will recall an important piece of information because of my journals or because I've had the time to sit quietly and reconstruct a series of events. By that time, it's too late to revisit the discussion.

I am not Mother Theresa or any other saint. I have made plenty of mistakes along the journey known as life. I do my best. I try. I give it my all, or I don't do it. If I'm not capable, I'll be the first to say thank you, but that's above my pay grade. I'm not all that, I don't proclaim to be all that. I'm just me. AnneMarie.

I'm also not a liar. I was raised with integrity and honor ingrained in every fiber of my being. I have embraced the philosophy of those who are guiding me through this present maze. Live authentically. Let the truth be the foundation upon which I stand. Be honest when loved ones ask me questions, no matter how much it may hurt to speak a truth about a wound from which blood is still flowing freely. But I do this. Every day, I do this.

And yet, I'm still badgered. I'm still presumed guilty until I can prove otherwise. I'm in quite a mess. And although I know the knee jerk response, especially from those who get it will be, "Ignore those people." There are some I can (and I do ignore) and there are some I can't. There are persons who mean far too much to me to write off.

When I must have those conversations, and I must share the truth, please, give me the chance to speak. Please allow me the moment to pause, and don't think it's because I'm angling for a way of responding to cast myself in the best possible light.

I'm simply trying to remain honest, to be true. Please. Be gentle with words, with tone and just be patient. No I am not the same. I'm living in a stressful situation and being badgered for answers to questions can drop me to my knees, bring me to tears, and create terrible distress.

If you happen to be close to someone who has the problems I live with, and you recognize yourself in any of these words, I implore you to try to understand the communication dynamic and to have a bit of empathy. No shouting. No demanding answers. No cutting the person off mid sentence. No patronizing. A simple, "Time out, that's not what we are talking about," will suffice. And, if the person feels there is other information that speaks directly to what is being discussed, give them a chance to say what's on their mind. When that takes them into those weeds, help guide them out.

I can't speak for all, but I can speak for many. Our actions are not deliberate. They are not to undermine. They are not to cause harm. They are not to frustrate.

Simply stated, in any given moment, it may be all we got.

And just because we do have days of complete clarity, know this. Those days are gifts because in this world, in my chemobrain world, they are far and few between.

Most days, I struggle for clarity. Presume I'm struggling. Don't back me into a corner because once there, whatever bandwidth I DID have for a productive conversation has since flown right out the window.

Not looking to upset anyone, but this is me, in 2017. My last round of chemotherapy, specifically CMF (the mild chemo), was exactly ten years ago. March 20, 2007. It definitely worsened over those first few years. Today, it's stable but there's been not one iota of improvement. Said another way, it seems this new way of life is permanent.


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Sunday, February 26, 2017

MY GIFT FROM THE SEA

I have so many irons in the fire I'm not sure writing a blog post is the best use of my time but it's important for me to do this. Today. Now. In this very moment.

When one chooses to launch a blog that is so personal in its nature, it can be challenging. None of us lives in a vacuum and yet, so much of our lives involve the lives of others. Whether children, spouses, parents, friends or siblings, their privacy is something that must be respected. Just because I choose to bare my soul, or my chest and their new tattoos, or talk about how I'm reclaiming my sexuality with Mona Lisa Touch, where is the line?

Make no mistake, there is a line and it's one that must be respected. I have felt such a connection and such a sense of community from the first day I hit the publish button. If I was going to do this, if I was going to take on the challenge of launching, and then sustaining a blog, it was going to be authentically me. I was encouraged by a dear friend, validated by my yoga instructor, and coached in the beginning by a volunteer mentor in the Visible Ink program at MSKCC.

I let the words fly across the page, tossed out any "Blogger 101 Rules" that may exist for some and decided, I am enough. I would simply speak from my heart. I have been joyful, and I have been filled with deep sorrow. I have shared what I believed was justifiable outrage at times, and I have expressed my fears but some of those fears were so scary, they remained locked in a place where I could not even glance. I've shared much about research which I have come to realize is where my advocacy passion runs deep.

Many of you know my messy family disease history as it pertains to breast cancer. Many of you may know my mom is living with metastatic breast cancer since 2013 and has been responding to the same treatment regimen since her diagnosis over four years ago. So many of you held me up when I tried to wrap my brain around that cruel twist of fate: hearing the word metastatic. That cut like a knife. That mom is still responding to the same treatment and that you have all been here? Gratitude. Deep gratitude. Gratitude for which I have no words.

What many of you don't know is that I have been living a messy personal life, too. In pain. Not physical pain, but emotional pain. In many ways, I have been living a lie and that lie has stolen years. Too many years. There is a backstory known to very few people. You know who you are and for holding me up, every single day for so very long, and to those who may not even have realized what their encouraging words for seemingly no reason have meant to me, my gratitude is as deep and vast as the ocean I have been gazing at for the past year of my life. For the one who reminded me, "as long as I've known you..." No Words Will Ever Suffice.

Aside from a handful of places in hundreds of entries, I don't think the words, "my husband" appear too many times in this space. Yes, I am married and I have been for many years. Legally, yes, I am still married but with divorce papers now filed, the time has come to step outside and beyond the shadow of "my husband."

I moved from a large home in a nice suburban community outside of NYC to a two room apartment in a beach community that faces the Atlantic Ocean. My apartment is furnished, which is to say, it's really not home. This year has been a stepping stone. Either I would find my way back to my marriage or I would have to step forward and move to an entirely different stone, one where I've never lived.

Never.

Ever.

A stone with a home that will be solely my own. I lived with my parents and my siblings, then with husband, and children and now, I venture out on my own. By myself. For myself.

It has taken an entire year of living by the sea for me to become one with myself. Getting my heart, my head and my soul on the same page has been one of the most difficult things I've ever had to do. As the clock on 2016 was winding down, I was finally able to do just that. I realized that it was time to close the chapter on my marriage and begin writing the next chapter.

In many ways, these past five years, writing this blog and following the path where it continues to lead me, has been the chapter in between. And yet, it wasn't until I gained clarity watching the waves washing over the sand as the tide rolled in and out each day, every day that I realized I have been standing at this same crossroads for far too long.

For an entire year, I walked the beach. I got to know myself. I amassed a shell collection that is quite beautiful, albeit some might claim, a bit excessive. Who even KNEW the sea tossed these shells on to the shore on the beaches just beyond NYC limits? I became more and more comfortable in my own skin and realized I was living inside the skin of someone else.

I learned that a caterpillar sheds its skin five times before emerging as a butterfly. It wears, and then outgrows each of those five skins. There's symbolism in there, although my mind can't quite grasp its full meaning today. There's further symbolism in the struggle of the butterfly to break free of the cocoon which is what strengthens its wings. I'm not too sure how strong my wings are, but today, I am finally comfortable stating that I am no longer married, that I am a single woman. I have no idea what that means, or what it even looks like, I just know it's not who I am. It's what I am. Who I am is defined by many different things, the least of which is my relationship or marital status.

Legally my name is unchanged until this chapter is closed by a matrimonial judge. Hopefully that will be months and not years. Unfortunately, that is beyond my control.

I know when that day comes and I can reclaim the name I was born with, it will be to make certain I am honoring the man who gave me life, the man who cherished me and respected me, the man whose honor and integrity is head and shoulders above that which I leave behind.

I shed my skin.

AnneMarie Mercurio is about to emerge.



And yes, November 10th happens to be the day I was born, and that is from a book called The Secret Language of Birthdays. Say what you will, I say, if the shoe fits...


And on another note, with still more gratitude, it was suggested by a very new friend that I read Gift from the Sea by Anne Morrow Lindbergh. It was written in 1955 and I don't know how I never heard of this book. It's on my kindle. Only four pages in, I feel it was written for me. Hence, the title of this blog post is a nod to the book and a nod to the sea for giving me back my life.



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Saturday, January 7, 2017

CHOICES AND DECISION MAKING

Translational research is, in very broad and simple terms, the ability to take science from the lab and make it useful to us, the patient. This can take years. And years...

Cancer Moonshot, which is safely transitioning beyond the current administration, hopes to half that time. Sidebar and personally speaking, I'm proud to be on the fringes of any project associated with Moonshot and I'm deeply gratified to see the dedication of the scientists who are putting their hearts and souls into this initiative.

Precision medicine has been defined as getting the right medication, to the right patient, at the right time. The research and the optimal way to deliver treatments to patients are intertwined. Two sides of the same coin, if you will.

Translational research for the patient population is translating the research so that is actually means something to us. Using language that is familiar to a lay population. (OK, so that's not in any official definition of translational research, but from a patient point of view, I'm using the term "translate" in a very literal sense, making it my own. Allow me some leverage here.)

Having been involved in research meetings and on a number of different projects over the years since 2012 when I realized I love this stuff, I listen closely to the research findings and somewhere along the way, it became evident I had to learn a new language, too.

Statistical significance is an accomplishment for researchers. In science, this means that the study achieved its goal. Research was able to prove that A was better than B because "A" was a certain percentage better than "B" at the end of the day.

What does that mean to the rest of us? Unless it's put into real world context, not a whole lot.
For starters, to see 30% less likely to die, as a patient, I'm all over that. And, for what it's worth, this particular study should force a change in first line treatment of metastatic disease. Bottom line, until metastatic patients "fail" on arimidex, they are not switched to faslodex. From that point of view, why should we wait to have the drug fail us before we are offered a better option. That's something that must be addressed with the insurance companies that pay for this stuff. Lives matter.

Since this is a reworked version of something I posted in 2013, I'm happy to say that in NYS, this Fail First thing is now something that must be adhered to under the requirements of a newly signed law. Step Therapy, as it is officially referred to, is now addressed in a law with very specific requirements and directives. In theory, doctors should have the last word, not the insurance companies. Since the law is new, I await the horror stories or the loopholes that may be exploited. I hope I'm wrong. Stay tuned.

In 2017, fulvestrant is now widely used. For the purpose of this discussion, however, I'm trying to make a different point: What exactly does that 30% mean?

Six months. To be precise, 5.7 months. When you are staring down a fatal diagnosis, to be given six additional months is a big deal. However, when I read 30% "less likely to die," from a patient point of view, this is what I see:

"Seven people will die, three won't.  Maybe I'll be one of the lucky three."

And therein lies the rub. That's inaccurate. The study is clear. Death is imminent. The amount of time has been increased by 30%. Out of context, even if I understood that concept, that it was time to death, we are still missing crucial information. What is the base from which we are working? Without that information, 30% is no different from hearing blahblahblah. If we are, for example, starting at ten years, we've just gained three more years. Quite a difference from 5.7  months.

Then, there are treatments for prevention of recurrence, and this is where shared decision making becomes equally important. Using that same 30% as a measure of reducing risk of recurrence, the real information lies in this. How many women must be treated to derive the benefit? If, for example, 100 women would need to be treated to prevent 2 recurrences, THAT is the information that should be discussed between doctor and patient.

That is the only true way for us, as patients, to weigh the risk associated with any treatment against the potential benefit. Some of us are risk takers, some of us are not. Some of us who are risk averse but can't bear the side effects, need to know that a decision to stop a particular treatment in favor of quality of life, are not writing ourselves a prescription for disaster.

Without information, in context, presented in ways that the rest of us can understand, there can be no true shared-decision making based upon the actual evidence. It's all relative, yes. But some of us don't understand the theory of relativity. Speak to us in ways we can understand.

The era of patient centered care, of precision medicine, has made this a bit challenging. Sometimes there are many different qualifiers (age, hormone status, genetic biomarkers). While there is no cookie cutter answer that works for all, each of us deserves to have, and most importantly, to understand, all of the available information so we can play a role in guiding our treatment.


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