Wednesday, January 25, 2012

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 big C.  Until THREE days before I was told, I did NOT believe I was walking around with cancer.  In other words, I had three months before I set foot on the runaway train.  And upon video review, this begs the question.... "AM, do you suppose any of this plays into your OCD with things in threes?"

During those three months, I pored over every word in the first two pathology reports and I used the internet very responsibly.  (That DOES sound like a typical AM 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.  And my brain was still BC.  Even if my body was already EF without my knowledge or permission.

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 AM's CB.  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.

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.  I got courage from the Lion, love from the Tin Man and knowledge from the Scarecrow.

Now?  I want those Ruby Red Slippers.  And I want them now, 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 mass produce those slippers for all of us.  And one day we will don those slippers, close our eyes and know that Glinda is whispering in our ears.  You are protected now.  Those slippers will protect you.

Your cancer is cured.  Your cancer is cured.  Your cancer is cured.

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

7 comments:

  1. Courage and heart. You have these in abundance. I'm glad to be on this road with you,
    jms

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  2. Yes, you do have those attributes (and an Emerald City full of spirit).

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  3. I love this post with all my heart...you hit the nail on the head.
    Tammy

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  4. I have so much respect for each and every one of you that it means more than I can ever express to read these comments. Thank you. thank you.

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  5. Ann Marie,
    I love this post. What an amazing way to share about your decisions! You, my dear, have tons of courage, heart AND wisdom! It's a crazy "yellow-brick road" we are on isn't it? I'm glad you're on it with me. Well, I'm not glad you had cancer, but you know what I mean!!

    And oh yes, I want those slippers too!

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  6. Nancy..
    I DO know what you mean... and I am so glad we met here..... It's been such a sobering experience for me on many levels but mostly it's been empowering. I've been encouraged by many and I can feel the support when I need to be held up because I'm having a "moment." My life is immeasurably better because of everyone who entered my life over the past six months. You were among the very first..... and that is always so special....

    When those slippers are ready, they will be MASS produced for one and all...

    xoxox

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