REMEMBRANCES AND REMINDERS

Today is ..... Seriously.  Do I need to tell anyone what today is?  I was going to set this to post at precisely 8:46 AM, which, according to the timeline is when the first plane hit one of the towers at the World Trade Center.  In the post 9/11 world of TSA regulations and heightened awareness, that is the proverbial line in the sand.  I chose to leave it at 6AM. That is the time the first plane was boarded.

I live in a suburb of NYC.  I am approximately 23 miles as the bird flies from the site known as Ground Zero.  It was referred to as The Pile when it burned for months after the attacks.  Then, it was The Pit when it was cleared.  Still, it is the site where it all began.  It's the place that marks the single deadliest attack against Americans on American soil.  It's the place where the remains of many simply disintegrated.  Ashes to ashes.

I have many vivid memories of that day.  I can recall some of the thoughts that were going through my head as I sat watching the horror unfold.  Both of my kids were in the restaurant atop the North Tower just less than three months prior. Different occasions, but I remember feeling a bit of gratitude that they were able to be in that space and experience the splendor of looking out those windows.

One month before, I was flying home with my kids.  There was nothing more spectacular than an early evening landing at LaGuardia airport.  Essential?  A window seat on the right side of the plane as the twinkle of the lights would appear without warning.  Instantly, we were flying beside the towers.  It took my breath away each and every time I was on a flight following this path.  Close enough to see inside those windows and then to head up the Hudson River catching a view of the entire city, it was a sight to behold.  The memory is burned into my brain.  Indeed, I remember the FIRST time I ever experienced that grand show.  It never got tired.  And now.  It is no more.

Flight patterns have been altered and that is now a no fly zone.  TSA has taken over inside the airports and I've shared some of my experiences about what it's like to fly, a breast cancer patient, in a post 9/11 world.  Things are very different today.  A loss of innocence among people around the globe.  Not dissimilar to what happens when a cancer diagnosis is inserted into our own life timeline.  Shocking and unexpected, we learn how to renegotiate the manner in which we live. We are dictated by things beyond our control.  With terrorism and with cancer, which is terrorizing.

Many people within miles of my home lost their lives.  It was an endless sea of memorial services.  In the weeks after, greetings between friends and acquaintances more often began with, "Is everyone alright?" not the normal "How are you?"

I was always most stunned by the lack of coverage over those who jumped to their deaths.  Those who took matters into their own hands.... it's horrifying.  Jumping to a certain death was the better option??  The fact that little was ever really spoken about this saddens me.  It is a compelling part of the events of that day.  It's the harsh reality of what it meant to be in those buildings trapped above the flames.  Waiting to die.  No one knows the exact number.  Perhaps 100 or possibly as many as 250 took matters into their own hands.  Chose to die on their own terms.  THAT is reality.  A reality that was little known and often ignored.

Reality is not pretty.  Today, I honor the memories of all who have lost their lives on that day... I honor their families who will grieve for a lifetime..... I honor those children born after their parent perished..... How many were not in the house to receive that final phone call and relive those moments, having listened to that last message on their answering machine and live with that every single day?  How many buried empty caskets because there were no remains despite the finest efforts and live with that every single day?  And HOW MANY have died in the aftermath from the work they did on the Pile and in the Pit breathing unsafe air?  How many of those first responders are now cancer patients or who have died from cancer or other diseases related directly to their efforts at the site?  This is finally going to be officially acknowledged according to an news article I saw rather late last night.  I stand to bear witness for all of them.

I know many of you may have already seen the entry below which appeared as a guest post on the METAvivor blog in June. I may have cross posted it here.  Or not.  I have come to feel that my sisters (and brothers) with Metastatic Breast Cancer are the Jumpers.  Waiting to die.  Hoping for a miracle.  Mostly ignored.  Hope isn't going to save their lives.  Standing shoulder to shoulder and insisting they are the priority is my primary goal.  I've watched too many die.  I've shed too many tears.  There are many more I know I will shed.  It's time to raise a new kind of awareness.  It's time to acknowledge the reality.  It's time for noise.  It's time to break the deafening silence.  It's.Just.Time.


In the Midst of Silence

Posted on June 19, 2012

Between “moment of silence” and “prevention of cancer from spreading,” exists the land of the forgotten. Who resides there? Those for whom I am a #FearlessFriend, those hoping their names will not be mentioned with the former, and, yes, those who have already been kicked out of the ranks of the latter. Their cancer has already spread. Where do they fit into the current breast cancer paradigm? Do they fit in at all?

We talk about early detection, we talk about attempting to understanding the cause, we talk about finding ways to stop an early stage cancer from recurring, we talk about finding ways to prevent metastasis. Aren’t we forgetting something? This glaring omission is really quite disturbing on the low end of the rage meter. On the higher end, it’s positively disgraceful and absolutely disgusting. Who is discussing those already diagnosed with distant recurrences? Where are the Stage IV patients?

When we visit the emergency room, there is a pecking order. The clumsy idiot who managed to deeply gash my finger with a butter knife waits. And yes, I really did that the other day and NO, I did not go to the emergency room despite the fact I’m sure this cut should have been stitched. The guy who comes in clutching his chest is brought right in and hooked up to a machine to be monitored. The person whose ambulance is greeted by the ER doctors goes right to the head of the line. (Although I’ve only seen that on Grey’s Anatomy, the meeting of the ambulance by the ER docs all suited up, you get my point?) We triage. We treat people based upon the urgency of their problem.

Why are we not prioritizing breast cancer research based on this urgency? Where is the triage? There are plenty of people who will find ways to argue statistics. There are those who take exception when the number of breast cancer deaths is cited. I’m not sure I understand why this is an issue for some, but I recall a conversation wherein someone indicated they didn’t agree with its use. Statistics can be skewed, but cold, hard, tangible numbers are simply numbers. And 40,000 is quite an enormous number. The number of lives being taken in this country each year remains, for all intents and purposes, unchanged.

That’s not okay with me, and it should not be okay with you either. While I’m ill-equipped to quote numbers or analyze statistics, as I could in my pre-cancer life, I do know that the number of those living with metastatic disease extends WELL BEYOND the 40,000 who will die. How many are living with the disease and are suffering daily from the fallout of the drugs that are keeping them alive? How many of them are okay for today, but truly live with one eye constantly glancing over their shoulder, knowing the disease has taken up residence outside their breast? They are terminal. Not chronically ill. Terminal. The vast majority WILL die from breast cancer or from the futile and toxic attempts made to treat the cancer.

If we are brave enough, we rally to their side as they lay dying. We speak their names with reverence after they are gone. We do things to memorialize them after they have died. Whether we walk with their names boldly written across our backs or we send money to a charity, we do plenty after the fact. That’s not okay with me, and I don’t want it to be okay with you, either. We should be standing shoulder to shoulder with them while they are alive.

For too many years, indeed since the pink ribbon turned breast cancer into the poster child of all cancers — and I’d argue, too, the most recognizable disease around the globe — those with stage IV breast cancer have become an inconvenience. Their presence is a stain on that ribbon. The reality that is metastatic breast cancer is bad for business. The Stage IV’s are ruining the whole gig. They don’t fit the image of hope and success and survival consistent with the message that ribbon has come to signify.

They are ignored. Just like those who jumped to their deaths from the World Trade Center on September 11 were not spoken of, we go out of our way to maintain our silence about those afflicted with metastatic disease. If little coverage was afforded to the jumpers, we could pretend they did not exist. But, they did exist. And their numbers were far greater than we will ever know. Their stories are too horrifying. The manner in which they died is too unimaginable for us to accept.

Similarly, if we pretend no one resides in that place between the “moment of silence” and the “prevention of distant metastasis,” we can ignore the existence of those whose lives we have become all too willing to sacrifice. They are not an inconvenience. They are not a stain on the ribbon. They are our sisters and our brothers. They are counting on us to make sure they are not buried beneath that ribbon. They are counting on us to make sure their voices are heard. They are counting on us to insist they are the ones who are treated first. They are counting on us, as they count their days, their weeks, their months, acutely aware that the hands of time are moving far more quickly for them than for the rest of us.

They are my priority. THEY are my cause. First, we save their lives.

I am and I shall remain a #Fearless Friend.

Everything else can wait. Because nothing else is more important.

~ AnneMarie