LIVING IN FEAR AND THE GUILT OF SURVIVING

Unlike the manic circles I watch when a dog chases its tail, (which tend to resemble the days of my life with increasing frequency), I noticed that a couple of things I mentioned in previous blog entries have also traveled in a circle.  Some of my observations generally stumbled upon via some form of distraction have been in recent news.  Case in point?  MY gummy bear implants that were a mere punch line in my very first blog entry are now at the center of a recent FDA hearing.  Full circle.

I am the person who refuses to leave any unturned stone while doing any sort of research.  From the ridiculous (does salted or sweet butter produce better cookies when following the recipe on the Nestle bag) to the sublime (stumbling upon drug shortage factoids and brain damaged mice from a particular chemotherapy drug) and back again.  Mostly, it’s been more ridiculous than sublime.  Mostly, this has been about laughing my way through the challenges of CB.

Information is power.  Cliché hell, again?  Perhaps.  I don’t know where my brain is going to take me today, I’m just letting my fingers do the walking.  I’m at the point in my cancer journey where I’m passing all of those dates, the biopsy, the diagnosis, the surgery, first chemo and it’s all five years ago.  I acknowledge each date with its proper deference as the dates have become part of the tapestry of my life. 

I‘ve become acquainted with a number of people in a very short period of time since I began The Chronicles of Post Chemo Life.  Brilliant bloggers, exuberant volunteers, sassy survivors and those whose stories have had the most impact on my life...... those patients living with metastatic disease.  I live with a certain amount of fear about mets despite the fact that I was as aggressive as I could be in my treatment choices.

When an A Game Surgeon sits across from you saying, “I’m confused,” or “You definitely have a guardian angel,” or “We NEVER pick up invasive lobular cancer at such an early stage,” and again, “I’m confused” for the fifth or sixth time in a three minute period, it feels bizarre.  In that moment, should I feel gratitude over the guardian angel or concern that I am hearing a prominent surgeon admitting confusion?  Talk about a fight inside my head?  That particular brain fight was worse than any CB fight I’ve had to date.

I’m pretty sure any cancer patient will agree that the only fear more gripping than hearing the word “recurrence” is the terror associated with the word “metastasized.”  I say this with complete empathy to anyone living with mets who may be reading this, but damn it: Why is it necessary to use The Big Words?

Does it sound better?  Is it less frightening?  Having not walked in those shoes, I can’t answer those questions.  It just seems to me like it’s more the “repackaging” of the diagnosis to minimize the effect (and the affect... and yes, both words fit, either one is grammatically correct and both make a different, yet horrifying point).  It’s semantics.  Bottom line.  Recurrence=The Cancer is Back.  Metastasized=It Spread.  Both awful.  But not equal in their awfulness. 

As the tenth anniversary of September 11 approaches, I remember those awful feelings.  There were awful feelings and there were terrifying feelings and a whole mess of "in between" feelings.  We are about to be inundated from every form of media.  We will share in the respectful ways to honor those who were killed, acknowledge the heroics of those who risked their own lives to save others, follow the survivors, seek out the loved ones whose lives were changed in a single moment in time and check in on the children-some of whom were born after the deaths of their dads.  I expect I will see images of burning towers, plumes of smoke rising from The Pentagon and a debris littered field in Pennsylvania.  I expect I will see these images over and over and OVER again.  It is important that we never forget and it is important that we acknowledge those whose lives were forever changed ten years ago.

Yes, this was an unprecedented moment in the history of our country.  I live close enough to have seen the smoke cloud wafting across what may have been the bluest, most cloudless sky I’ve ever seen in New York.  I live close enough to have walked out of my door two days later questioning why my eyes were immediately irritated and began burning within moments.  It took time for me to realize what was burning my eyes and assaulting my sense of smell were the fumes emanating from Ground Zero.  The wind was blowing everything right into my zip code.  A zip code where lives were lost, widows were made and children, instantly, became members of the statistical, “single parent family.” 

It’s heart wrenching.  It’s larger than life.  In the days ahead, I expect television coverage to increase dramatically.  I expect it will build to a 24/7 multi-channel frenzy of images.  Planes flying on angles to make maximum impact, the screen filled with black clouds and white dust.  Buildings pancaked to the ground, first one, then the other.  People running through the streets of lower Manhattan attempting to outrun a dust cloud that appeared to be the ash of a volcanic eruption.  And we will all remember.  And yes, we should.  Attention must be paid.

Almost 3,000 lives were lost and that number has been adjusted a handful of times to include those who died years later as a direct result of the attack and its impact on their health.  We will never forget 9/11 yet we seem to have allowed all of the Stage IV breast cancer patients to fall into some sort of black hole.  The Stage IV breast cancer patients horrify us in the land of “Rah Rah, let’s feel great because we are wearing a pink ribbon of hope.”

If I am being analogous to 9/11, the metavivors are the jumpers.  Little if any coverage will be devoted to the 9/11 victims who did not wait for their demise when they realized rescue was not likely.  They took control of their destiny.  They held hands and leaped to their deaths.  They jumped solo.  There are pictures.  Most are hidden.  It’s too horrifying to watch.  MANY jumped.

I read in a novel (back when I could still read a novel) a line that captured the way the media handled the jumpers.  It was a Jay McInerney novel and in his observation, the news media had some sort of self imposed moratorium on reporting on the jumpers.  One small sentence and it was the single most powerful line in the book.  THAT spoke to me. 

Similarly, it’s become a black mark in the sea of pink to admit we have come SO far in breast cancer research but have made little or no progress with metastatic disease.  Like many of the fire fighters who lost their brothers on 9/11, I suffer survivor guilt for my sisters.  THIS year, close to 40,000 women are expected to die of breast cancer.  I am not shunning other diseases or other cancers.  I am merely trying to find a voice for the forgotten in a disease that has touched my life.


I have been running from the disease since 1987 when my mom was diagnosed and she survived a pretty lousy prognosis only to face down (and smack down) round two some twenty years later.  Selfishly, I don’t want to face down round two.  With no breast tissue left, my round two......I can't even go there in my mind.  Protectively, I want the race to stop with me.  I don’t want my daughter constantly looking over her shoulder. 

I merely visit fear during the course of certain moments in my life as a “Stage 1 Survivor.” There are “Metavivors” who live in terror every day of their lives.  I read their blogs.  The percentage of breast cancer research dollars directed toward Metastatic Breast Cancer is in the single digits. Those living with “mets” are acutely aware of the where they stand and are rightfully enraged as we enter the Sea of Pink that will soon surround the globe.  Billions of dollars will be thown on anything pink.  Few will make their way into research that will save lives.  Their lives.  That is wrong.

As we pause to remember and pay respects to the lives lost on September 11, 2001, may we remember, too, our military around the world, those who have given their lives to protect our freedom and those who are still in harms way.  And, as October approaches, let’s remember those of our sisters whose treatment advances are so slight.  They are still in the medical dark ages in comparison to the statistical majority.

On October 13, the single day in the month designated for the Metavivors, let our voices rise as one in solidarity.

Elizabeth Edwards is quoted as saying,“I think if we would just fund breast cancer research or cancer research in general, I just need the medicine to catch up to me. The medicine is going to catch up to this condition – it's just a question of when.”

We know medical knowledge is growing at warp speed.  We need to see EE’s hope for medicine become a reality.  Donate to research, volunteer to walk, SEE if you are eligible for a clinical study, JOIN the Army of Women, buy pink if it makes you feel good just be very noisy about whatever you do.  The lives of 40,000 women are counting on us.  We can’t let them down.