Monday, July 25, 2011


A simple letter from the radiologist whose astute eyes wanted to do further images on a density he saw on my mammogram unfolded in bits and pieces before the cancer in my left breast was officially diagnosed.  That was the day I took my first step into The Maze.  As the chapter came to a close, I was finally able to rest my brain.

Too bad I would soon make that big discovery, “What brain?”  No more exhaustive research, no more need for information gathering.  It was a quest for so long.  If you are going through hell, I find it's best to follow the advice of Winston Churchill and just keep going.

We are all different and I am the type who needs to know ALL the options.   I would defer to the opinion of a doctor, primarily because I did exhaustive research to FIND the doctor so I already possessed a huge element of respect for their knowledge and ability.  I am fortunate that not a single doctor, and there have been many, was ever dismissive.

I had so many questions. They listened and took the time to explain why a particular test or whatever it was, would not be helpful in my situation.  And, there were no casual, let me attempt to be discreet, glances in the direction of a clock to make me feel I was wasting their valuable time.  The door was closed, the floor was mine and the world on the other side of the door did not exist until I was at ease and every concern was addressed.

I wasn’t talked AT, no question was stupid, and in looking back, I realize how very fortunate I was to have the best team around me.  No matter what the future holds, I will never look back upon the choices I made and question anything.  I was a fully informed consumer!   For that, I would be remiss if I didn’t use this moment to thank every single person at Memorial Sloan Kettering Cancer Center.  Doctors, nurses, educators, seminar speakers, office staff, volunteers and right down the line to the people who open the door because they can see you are too weak or too tired, or those whose job it is to escort you into the operating room or the ones who make sure the baskets of goodies next to the chemo chairs are always filled to capacity…… each special beyond words….. 

When, AT last I was liberated from the maelstrom of constant visits to doctors,  I didn’t know what to do with myself.  I was on a follow up schedule and thanks to a reduced work load which I had NO intention of reclaiming, I found a luxury that was missing from my life for so long.  Time was my friend and I can't recall when I last felt such freedom.  I was all set to participate in a writing program just launched at Sloan Kettering as a part of their ongoing support for all patients during or beyond active treatment, began a hunt on to build my family tree which produced some fascinating documents in a short time and I dusted off  the pile of novels I accumulated.  The Sunday Book Review was a staple in my life for years.  

Never got beyond a few emails about the writing program (fast forward three years and I am back on track with the Visible Ink program at MSKCC, paired with an amazing "coach" whose permission I will obtain to make a proper public thanks for keeping me on track), the family tree is in dire need of water and the spines on the books have not been cracked.  My “Let’s Discover Me” time did not last too long.  A series of events occurred as 2008 was winding down and I turned into Michael Corleone. 

Just when I thought I was out....
 they pull me back in.

I was over my head.  Reduced work load?  Not only was that a quickly forgotten concept, I was tossed into a situation of taking on responsibilities for things that, not only were completely new to me, much of it involved things about which I possessed absolutely no knowledge.  There was no "on the job training," no teacher or outgoing employee to ease the transition.  This was "figure it out for yourself as you get more stuff hurled your way" method of learning.  I did it.  Getting it done, however came with an enormous personal price tag.

My life was completely out of balance again.  There wasn't one second left over to pursue any sort of enjoyable outlets.  It was AD and in some twisted Back To The Future way, I was in BC time.  All work, only work, long days, lots of tension.....I managed to stress myself right back into an operating room less than a year after I thought I officially turned to the new calendar.

If the dominoes began to fall during the latter part of 2008, it was the winds of change blowing through my life like a hurricado over this past year that sent me running for cover. There were times it was a tornado.  Literally coming from out of nowhere, forcing me to (re)act quickly and with little thought.  Just get somewhere safe.  And there were other times, I watched it coming, knew exactly where and when it was going to hit and with a pretty good indication of the expected intensity.  I even had periods of respite where I was in the eye of the storm.  Hence, hurricane-tornado.

As the summer of 2010 was winding down, my life and by association me, went into a free fall.   My personal life was unraveling at warp speed, every single thing quite high on the stress meter and it just kept coming at me.  I got REALLY REALLY REALLY tired of hearing the pep talks.  “You are a strong person”  “You have broad shoulders”  “blah blah blah”  … 

I wanted someone to just be sympathetic , I wanted to wallow in my own little pity party and just hear, “You know what, this really sucks.  Really Bad.”  Leave it at that…..let me go through the feeling sorry for myself for a teeny bit of time.   I just needed to believe I wasn’t blowing things out of proportion.  I already KNEW it, but it would have been nice to hear it.  I wasn’t looking for solutions.  One thing I can do for myself is solve a problem.  Or, if I need help, I know how to find the help that will work best for me.

The good part about this period of time is that a surgery forced me to slow it down for a six week recovery.  The bad part of that was the fact that I was a screwed up mess and the sofa wasn’t the best place for me.  The good part of hating the sofa was getting the surgeon to say yoga was ok, the stretching would be great to aid in the healing as long as I didn’t engage my abdominal muscles.  Weeks out of what was considered a fairly major surgery, I'm cross legged and learning to meditate and breathe and stretch.  DaVinci robotic surgery-Amazing.  The alternative, if it became necessary, would have left me with a twelve inch scar and triple the downtime.

I feel like one of those people… you know “those” people who can’t shut the hell up when they think they found “it” …. My “it” was discovering yoga and I turned into the most annoying version of “those” people.  Truly.  Not only did the stretching feel great, I made a instant connection with my yoga instructor and she has kept me steady and focused through some pretty tumultuous times.  And for this, I would be remiss if I didn't say a public Thank YOU, Lorraine, from the bottom of my heart!!!

Many months would go by before I would learn that yoga was one of the best things I could have done for myself with the chemo brain.  Maybe not the "first place" best, but the point is, it was a great place to start and it IS pretty high up on the list of ways to manage stress in my world.  Unknowingly, I set in motion many of the things that I would come to learn were the very basis for learning to live in the Land of New Normal.

Manage stress, get a good night’s sleep, use every feature on my iphone-calendar, voice memos and some helpful apps.  Appointments in one place, noting the thoughts that always jumped into my head at the most inopportune moments-like, when driving on a highway.  Was doing the note writing thing, but it soon became a sea of post it notes, the most important of which was always buried under a pile of crap and, it really wasn’t cool to try to scribble notes while driving….besides the distraction of fumbling for the pen, I couldn’t understand my own scribble and that’s if I didn’t throw the note in the trash.

I am a work in progress.   And, it IS work, and it’s frustrating as all hell.  To steal a line from Laura Linney in The Big C:

I don’t want to FEEL better.  I want to BE better.

And for now, I have to accept the fact that feeling better may just be as good as it is going to get.  FOR NOW…..

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