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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