Wednesday, May 29, 2013

DECISION MAKING - WIZARD OF OZ STYLE


THIS POST IS ONE THAT I WROTE IN JANUARY 2012.  I'm doing an instant replay for anyone who may have missed it.  It's a year plus later... and oh how things have changed.. but this is still relevant.  In fact, it's particularly relevant....

It's poignant, too..... as I read my own words, particularly about distant recurrence and my mom and risk reducing and knowing what happened exactly one year after I wrote the following:

DECISIONS DECISIONS DECISIONS... OH MY....

It is most assuredly not a yellow brick road but it IS a path... a path with twists and turns and sometimes, unexpected curves and road blocks.  Life after a cancer diagnosis.  And I mean literally, the precise SECOND those words suck the oxygen out of a room.

If I'm going into metaphor mania, cancer would be the wicked witch that is snuffed out by a falling house.  The house would be the treatments we choose in our quest to live in the land of NED.  No evidence of disease.  I will leave it to you to figure out, in your story, who fills the shoes of Glinda, Tin Man, Lion, Scarecrow, Wizard, The Lollipop Kids.  The Other Munchkins. The Flying Monkeys.  A diagnosis of breast cancer and you are on that path.  Like it or not.  And suddenly, the Scarecrow is at a crossroads explaining how some people go this way and others go that way.  Every cancer is different and every decision along the way is highly personal.

Two characters remain standard for each of us.  We are Dorothy.  And that OTHER wicked witch?  The one who comes from the west or the east or whicheverthehelldirection... I suck at details like that... but THAT witch?  Like the story goes, she's worse than her sister.  She's the one we are running from, the one who has put such fear into our hearts.  We are constantly looking over our shoulders hoping we don't end up in that room with the God Awful Hourglass.  Filled with some degree of fear, we approach each crossroad hoping she isn't lurking and ready to pounce.

Shifting from the scary movie and into reality, this is Life Post Cancer for many of us.  For me, I have about six different doctors that I see at various time during the year.  The frequency depends upon the doctor.  The oncology follow ups are the ones that create the most distress.  Now at six month intervals, I get a bit tense the day before an appointment.  I get a bit fearful when I pull into the parking lot.  It's where I was told, it's where I had my first biopsies, it's where I sat in a chemo chair.  It's one of the less pleasant places in Oz.

OK... This is one of THOSE posts.  Hold tight while I reel my brain back in.....There is a reason for the title.  And there is a point in this metaphoric maze.  When I was diagnosed, I was faced with choices.  There has been lots of chatter about patient awareness and asking the right questions and gathering information before making what might be a life altering decision.  I'm connecting the dots backwards as Steve Jobs talked about in that now super famous Stanford commencement address.

There is an element of waiting in the treatment process and I remember the very first doctor on my cancer team dispensing pearls of wisdom.  The important ones stuck with me.  "Waiting is the hardest part.  Try to remember that."  It took three months, three doctors, three tests followed by three invasive procedures to find the sneaky cancer.  Until THREE days before I was told, I did NOT believe I was walking around with cancer.  In fact, I was strolling through the piazza's of Rome and then meandering through the alleys and waters of Venice with cancer growing in my left breast.

During those three months before setting foot on the runaway train, I pored over every word in the first two pathology reports and I used the internet very responsibly.  (That DOES sound like a typical wise crack, but I was cautious about where I searched for my info...... )  I had a good foundation and a decent understanding of things by the time I was blindsided with the words "invasive lobular carcinoma."  Now I was on that runaway train, or to stay in metaphoric Oz mode, I was trapped in the house as it got sucked into the vortex before landing on that damn witch.  I realize that foundation helped me to understand things that I just presume every cancer patient would already know.  Backward dot connecting?  I did NOT know this until I studied for my dissertation. Studying and learning.

There is a difference between a recurrence and an entirely new breast cancer.  That is the whole point to this story and why it always takes five (okay wise-ass, yes it's EIGHT) paragraphs to get to the point?  It's who I am.... It's what I do..... I ramble.... It's the chemobrain in my head.  The shortest distance between two points is a straight line. Tra La... got it. But my brain zigs and zags.  And I let it.

Two different situations.  Recurrent breast cancer and a entirely new breast cancer.  You are MONITORED for recurrent disease and you are SCREENED for new disease.  Part of the reason I opted for a bilateral mastectomy was not the fear of recurrence.  Fear of recurrence is something many of us learn to weave into the tapestry of our lives.  It's there.  But it's just a small imperfection that adds to the unique quality of our tapestries.  Recurrence will happen in some of us.  It may be local (still confined to the breast) or it may be distant (it spread).  It's been said the only thing worse than hearing "You have cancer," is hearing, "The cancer is back."  Recurrence, while statistically less likely in my particular case, Can Still Happen.  I can't control it so I refuse to obsess over it or allow it to command any more of my life than what cancer has already stolen.

My choice was made to minimize the chance of developing a second breast cancer some years down the road.  I began calculating my risk factors.  What is the likelihood I might develop a SECOND breast cancer?  And I see I am at risk because I am a woman, the risk increases as I get older, I am at a higher risk because of my mom's diagnosis, MY OWN cancer added a risk factor, we were both pre-menopausal and under age 50 to continue piling it on.....There just seemed to be too many things in the "These Odds Suck" column.  Add in the sketchy BRCA results and the crystal ball to see there would be two additional breast cancer diagnoses in immediate family members shortly after mine...

Did I really want to have to deal with this twenty years down the road which seemed to be the statistical marker for that second diagnosis? Bearing in mind that medical knowledge has the power to explode exponentially, I am going by the information that was available to me in 2006.  I did just poke around a bit and that twenty year mark is still, in 2012 being bantered about.  I'm not looking to sensationalize anything.  Not going to quote a statistic (not my gig... statistics and soundbites) that I can't fully back with proper peer reviewed publications.  I am just sharing something.

I seemed to understand in 2006 that I wasn't gaining a statistical edge with regard to the possibility of a recurrence.  It was all about removing the breast tissue to gain a statistical edge over a second breast cancer.  It happened to my mom. Twenty years later.  Exactly twenty years later.  Not a recurrence of 1987.  A completely new breast cancer.  I made the right choice.  For.ME.  The right choice for me.  I got courage from the Lion, love from the Tin Man and knowledge from the Scarecrow.  And validation from the pathology report of the rest of the breast tissue which was riddled with areas of DCIS, LCIS and would have resulted in many more biopsies as these were picked up on future imaging.

What Now?  I want those Ruby Red Slippers.  And I want them immediately, damn it!  The elusive slippers.  In the quest for those slippers, that wicked witch just melted away.  In my metaphorically maniacal musing, Glinda is in a lab somewhere getting ready to produce slippers suitable for all of us.  And one day we will don the slippers that are the best fit for our own circumstances, we will close our eyes and know that Glinda is whispering in our ears.  We are protected now.  Those slippers will protect us.... and I think I've accounted for all of us.....

Your cancer can't recur.  And your recurrent cancer will NOT progress any further, you will not die of this disease.  And as for you, no chance of ever developing breast cancer to begin with..... 

Step aside, Wizard, you are standing in the way of progress.  The lady has some work to do.

3 comments:

  1. As I sit here reading this post over morning coffee I can't help but think: Hey! Someone else who believes/thinks what I believe/think about cancer! I love the Scarecrow analogy because that is pretty much my mantra. Every cancer is different and every decision along the way is personal (individual). I usually say something like, "every diagnosis is as unique as every woman (or man) and each treatment plan is individual." Thanks for the repost.

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    1. Thanks, Heather....

      I think it's so important to understand that every treatment is not for every patient and some decisions are agonizing. I know mine were and it took me two solid months to determine my own course of treatment. Sometimes, it may be easier if there is a clear cut "best choice" which, in my case, was not the circumstance.

      In the end, I'm satisfied that I made the decisions that were best for me, with the information available at the time of my diagnosis.....

      AM

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  2. dear annemarie,

    i know parts of re-reading this repost must have been difficult, both for you and for your mom. but i am just so glad that you can look back and realize/reaffirm that you made the very best decisions for yourself.

    aside from that most important take-away, i see some pretty impressive creativity with the analogy of the whole diagnosed, decision, treatment with/for BC to wizard of oz. i KNEW there was some good reason i could never watch that whole movie - it was SO SCARY. little did i know...

    much love, XOXOXOXOXO,

    karen

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