Between Chemos

By The Numbers 

90…the number of days since Miki called from North Carolina to wake me up early one morning to learn of the pain she was wrestling with 797 miles away, shooting down her right leg.

77…the number of days since Miki’s first hospital visit.

41…the number of days since her first chemo treatment.

27…the number of days since she began losing her hair from chemo treatments.

27…the number of days since I saw the most beautiful baldhead!

23...the number of days since we’ve slept in the same bed together.

15…the number of radiation treatments to her lower back to take the pressure off the nerve to her right leg and foot.

Dozens and dozens…the number of cards wishing her well with positive, heartfelt messages.

Endless…the number of times I have…kissed her head, …enjoyed her smiles, …cleaned her commode, …been her drug dealer, …watched her sleeping, …been envious of her positive outlook, …built the tree house in my mind, and …wanted to hold her tight through this whole ride.

1…the number of days I hope we wake up to each other, at the end of each day…one day at a time.

So what do you do between chemo rounds?  One thing we have between rounds of chemo is time.  Eighteen days to be exact.  Plenty of time to think about things like numbers.  Recently though, the numbers have taken on a little different context.  The tree house is closer than ever to becoming a reality and that will surely be blog-worthy as it gets underway.  In the meantime we have been planning and looking for windows and a door for it, ways to get up and down from a height of 14 feet to it, and hoping the city will allow this to be done in the simplest way possible, yet be safe and stable without impeding it’s progress.  It is now formally “playground equipment!”  Whatever it takes!

We also go on field trips to get out of the house.  A drive by of the bison at
Lake Jacomo can feel like an African Safari...or not. 

Bison watching usually brings out DQ
treats.  Droolers stay in the car.

Stuart and I go paddle boarding one morning while Miki comes off her DQ high.

Time here usually starts when I either can’t sleep any longer, Tooga (the red dog) decides it is breakfast time, or Miki texts me from 60 feet away and lets me know I forgot something as insignificant as refilling her pain or nausea meds the night before (someone needs to buck up!).  No matter how or when I wake up, I always look forward to seeing Miki’s face for the first time each day.  She has been sleeping on the couch for quite some time now for comfort reasons.  As I come around the corner into the kitchen, I can see if she is up or still down from a restless night.  But her face tells it all…good night, rough night, or long day ahead.  There is nothing better than her alert and bright face in the morning and nothing more wrenching if she is in discomfort first thing in the morning.  The good news is, is that there are more bright and alert mornings than the other right now.

Recently, time has allowed us to have more visitors.  My oldest sister, Lynn, has started teaching Miki to knit.  This has also helped her pass the time during those nights when the night owl in her comes out. 

Miki’s parents came for a visit and had the chance to see her for the first time since she was a baby, with so little hair.  Walt and I watched some college football while Miki had her mom straightened up her bedroom and put away multiple loads of laundry that I have been afraid to.  It is all she can do to watch me put things away in the kitchen, but she has given that battle up for now.  If I were to tackle putting her clothes away, she may sign me up for a few radiation treatments to the head!  Later we took to the road for a little shopping which always ends in a nap back home.

Her sister and brother-in-law stopped by for an extended potty break and a chance to kiss a hairless head on a trip from Omaha back home to St. Louis.  We had a celebratory moment for a monumental birthday milestone for Rik.  And after catching up on as much as possible, they hit the road and got a few miles away only to come back because Rik forgot to pick up Gail’s purse when they left.  At least he had an excuse…that whole birthday getting older thing.  And for Miki, it ended in a nap.

Rik hits a milestone.  He is 1 again for the 60th time!

We had a few other nice visits with some special people that traveled some miles to see Miki.  Miki and Shirley took a morning and made stepping-stones for their gardens.  And for the first time in months, we went out to eat with Stuart and Karen to a new bar and grill that opened recently in downtown Blue Springs.  For a few hours, we were a normal couple again, out with friends…that ended in a nap.

Kelly, Miki's first student teacher and "adopted" child, in town for a bonus visit.

Shh, creativity at work.

Stepping-stones = NAP

Tomorrow it is time for us to find out how Miki’s treatment has impacted her body.  She will go in for a CT (Computerized Tomography) scan that uses X-rays to see just how successful the chemo and radiation has been before continuing her chemo regiment on Tuesday, in case any adjustments need to be made and will most likely end in a nap upon our return home.  This differs from an MRI that uses a magnetic field and radio waves that would also end in a nap…check that science out in your old 9^th grade physical science textbook…never mind…Google it.

One more reference to time.  Some of you know that we have another goal for Miki to focus on besides her tree house.  No, it is not my next birthday present, but that would be worthy of some focus.  A 16 day rafting trip down the Colorado River through the Grand Canyon next March.  We have gone from the elation of getting the permit after 15 years, to the realization that it would not happen for us with the turn of events this summer, to we can still do this with the team of people that will surround us on this bucket list adventure.  More on that later.  But one thing I have learned on this journey so far is that time makes things relative.  Time will tell.  And things that take time usually end in naps.

My Zen from Home:  As much as we have been surrounded by highly qualified professionals that are good at what they do, it seems as though some things, actually many things, would not have happened or be as far along as they are, if we had not asked, pointed out, or advocated for ourselves on this road.  What is important to remember is they can’t read our minds and anticipate our struggles, but they can make an effort if they are made aware.  Don’t expect things to just happen for you, sometimes you need to make things happen.