Embarking on a New Journey Without Leaving Town

What do you get when you cross a strong willed, “git r done” girl and a life-altering hurdle?  I’m not sure either, but with Miki as the “git r done” piece of this riddle, it will surely be positive and end in joy.

I’ve written about leaving town since retirement became our full time job 3 years ago, but this particular journey started without us leaving at all.  It began with ever increasing pain in Miki’s right leg, lower back, and an MRI (that insurance denied…twice) that has lead us down this path that follows.  This journey will be seen from my perspective, describing the pain, courage, joy, and other adjectives of life.

I am painfully aware that this experience has unfortunately played out over and over for what may seem like eternity and for millions of husbands, wives, sons, daughters, relatives, friends, and enemies.  But this time it is new and fresh and unique, because it is our experience. 

In The Beginning

During her trip to North Carolina, the first domino was tipped that put us on the highway back to Blue Springs, where she endured literally lying with the dogs in the back of the car for a 13 hour trip home.  Having consulted with our primary care physician and having an MRI denied twice by insurance, an approved X-ray that was not helpful in the least (approved), a trip to the ER following an exponentially painful weekend began a string of “it was meant to be” events, that in a matter of hours she had the needed MRI that held the key to her pain, was pre-admitted to Centerpoint Hospital, and was surrounded by an extraordinary group of caregivers, including a neurosurgeon, that was like a dog after a bone trying to find the best path to her recovery.  What a Monday!

We don’t recall the “C” word ever being uttered as different scenarios were discussed, but there were masses and shadows on the MRI and biopsies to discuss.  Assuming it was SOP (standard operating procedure), it was the elephant in the room that was quietly waiting its turn.  As I write this, we still have no definitive identification of the cells in question, but for me it looms on the horizon.

As I’ve lived with Miki for the last 32 years, it became apparent early on that she had a high tolerance for pain and it wasn’t because she was living with me (ha…beat you to it!).  When she called me early one morning before I flew out to help drive her home from North Carolina, I heard and felt a sense of desperation in her voice, I had never sensed before.  She called in search of relief for the cramping in her leg that was so painful.  Her sleep depravation was palatable and I sat on the other end of the phone as helpless as I have ever felt.  When was the last time you told someone, that sounded like they were hanging by a thread, that “it would be alright,” and it worked?  Exactly.  That experience should have prepared me for the weekend before this journey picked up speed. 

The weekend before we landed at Centerpoint and having been denied twice for an MRI (have I mentioned that already!?!), and seeing the desperation in her limp, I heard her on the phone to our insurance company pleading between sobs for permission to grant the MRI.  Their denial was placed on some third party guy in a cube, following a guideline that didn’t see the “drop foot” she felt, beginning to show from the loss of control through the pinched nerve to her right foot.  In comparison to some people and their personal struggles and the constant, insufferable pain they must face, this may not be in the same ballpark.  But in Miki’s ballpark, this was a struggle like she had never encountered.

As our stay in the hospital was ramping up, we were surrounded by a neurosurgeon, an oncologist, a nurse practitioner, day and night shift nurses, support staff (from cleaning to transporting), and hospital volunteers, all of which we would have taken home and made part of our family.  These folks surrounded us with comfort and care, easing us into a new set of circumstances that have still not come into full view.  On the flip side, leaving the safety net of that hospital room and the people that walked through the door, proved to be a challenge all in it’s own.

During this last week since the events above have unfolded, there were many memorable moments, but a few stand out for me.  I told Miki one day, after she had asked repeatedly if I was okay, because I was being more quiet than normal, that I had made a conscience decision to let some of my reactions go that would normally follow one of her requests, comments, or verbalizing an idea.  Not that every reply out of my mouth is meant to be “smart” or funny, or that her decisions should be any less than what I am thinking.  But it became apparent that even though we were going through this journey together, this was about her, not me, and I should be able to live with whatever she does or says.  I have an opinion that I may want heard, but hers is the one that counts.  Those little battles are not important as long as she wins this war.  She has become number one this week, in a way that I was not sure I could support, but like I said, this is not about me.

Another memorable moment happened the day we came home from the hospital, while waiting for pathology to earn their keep.  As I was either driving to or from the hospital, a number of times I could feel my eyes watering up.  It was not enough to squeeze out a tear or two, but enough to wonder, “What the heck is going on?”  I was not particularly sad or anticipating the worst with Miki, but I came to the conclusion that it was the “unknowns” wandering around in my head.  Where would this lead?  How long will we be in limbo waiting for answers?  Why are we not devastated at the prospect of this discovery?  I knew the time would come when the tears would flow and the weird muscular contortions that come with uncontrollable sobbing would finds their way onto my face.   The tipping point came when I didn’t have to “take care of business” at the hospital and the seriousness of Miki’s pain and trying to find her joy would come together.  Her attitude and outlook have kept us afloat since the initial report on the MRI…until we were home and I read her this entry while she was resting in bed.  She always reads and edits my blog before I post it.  I knew it was going to be difficult this time, as she requested I read what I had written so far to her.  I had no idea what I had stored away inside since her painful plea on the phone one morning that came from a small cabin in the Smokey Mountains.  My own words triggered a release of fear, anxiety, and helplessness that had been stewing ever since.  With that out, I am ready for the next round.

Finally, as we prepared to leave the 4^th floor of the hospital, where Miki was taken care of and supported, the relationship was about to be severed and we would be on our own.  The responsibility of monitoring her medications, keeping a positive face, and having all the answers or access to them, were now squarely on us.  The instantaneous effect if an IV was now a 30 minute wait to see if it was the right dose.  Instead of a fresh smile coming through the door to take her vitals, she was stuck with my unshaven face with a sleepy grin.  And any answer she could get me to conjure up for a question she had, came from a career of answering physical science questions from middle schoolers, who pretty much believe whatever comes out of your mouth.  Can you sense the intrepidation yet?

There were more good times on the 4^th floor in room 427 than bad.  Miki had more tears of happiness than pain.  And I was fortunate enough to not have been included in a long day of girl talk mixed with dark chocolate.  Sharing is not a priority on Mars (Men are from Mars and Women are from Venus reference…I guess if I have to explain it, I shouldn’t have written it!).

Miki is strong, which makes us strong.  She is optimistic, which makes us optimistic, and she is sure of a joyful outcome, which makes me happy.

My Zen from HOME:  During the 5 day stay at the Centerpoint Spa and Trauma Center (my name for it, not theirs), I learned there were so many people running around doing a specific job and if they didn’t, it could topple the whole organization (sort of).  As we met the volunteers that “stop by” to bring a newspaper or the employees that clean the rooms, Miki would have their life story by the time the door hit them on the way out.  So many fun pictures came out of their wallets or shared from their phones, good stories of survival, or well wishes from a former stranger.  Like little ants running around in a seemingly random pattern, each is important and makes the whole successful.  I always new as a teacher, that all the jobs that make a school run are equally as important as the next.  No matter what you do for a living, there is always someone else depending on what you do.  You don’t have to join the army to Be All You Can Be.