Ebb and Flow

I am going to be daring today and write this in the morning instead of the waning hours of the evening.  Change around here is something that has been slow to happen, but like glacial movement, its inevitable.  I don’t have the tree house to roll out of bed into yet and I actually straightened up the garage a couple of days ago.  I tackled the downstairs, which has acted as a dumping ground for stuff since we got home from North Carolina in June and it has been added to since.  Miki may never see some of her stuff again, since I am the one that has carefully found a home for each item moved.  I’ve found some “doghouse” paraphernalia that I will hold on to until we run into its new owner again and it looks inviting again instead of a room you might see on the reality show “Hoarders.”  You know things are changing when I start to straighten up and clean!

The last week or so has been pretty much miserable for her.  I am sure Miki has other expletives for it, but it is safe to say it hasn’t been good.  Those of you that keep up on Miki’s blog know that when she doesn’t write for a few days or more, sumpin’s up.  She was ebbing!  She seems to be flowing back in the right direction now…glacially speaking.  The oxygen has been helpful, but her physical therapist has been such a gift.  Her knowledge and experience has unlocked a few pains and I am sure some of her time has been off the clock.

We found a “gamers” chair at the Habitat ReStore a few weeks ago.  We really didn’t know what it was at the time.  It had rocking chair legs, sat low to the ground, and it was funky enough to consider it for the tree house.  Someone that stopped by said it looked like a “gamers” chair.  Until you sit in it, you would not believe the comfort it has designed into it.  I washed it’s cover, added some foam to it, and it may be her favorite chair now.  It is comfortable enough where I can understand why someone would stay in it for hours on end getting carpal tunnel in his or her thumbs.  I also learned from the omnipotent Internet that they don’t make them anymore, so that makes it a collector’s item.  That is a hoarder’s thought, isn’t it?  Between knitting and nodding off, I think her body is happy in it.  It is destined to be a tree house design element (yikes, I have been watching too much HGTV!).

Miki instructs her trusty companion on a new stitch for the sweater she is knitting.

A cool fall morning for a gamer!

Oops, I spoke to soon.  She appears to be ebbing again.  That is the way everyday, every hour, and sometimes every moment seems to be these days.  When she closes her eyes and goes inside herself, it can’t be good and I can only imagine the worst as I watch the skin tone on her frail body change, like that of a chameleon.  It has crossed my mind to get some clown make-up and give her face some color, just to contrast the last few months. 

She has moved from her gamer chair on the deck to resting on the couch now, in what looks like an uncomfortable position.  The thermometer shows a small spike in temperature, as the hum of the oxygen machine in the background becomes white noise to help her relax.  Of all the mental forecasting I made going into this of what it would look like, much of it was way off.  What I wasn’t wrong about was her inner strength and patience to ebb and flow through each pain, each medication, each smile, and each detour she confronts on the way.  You know things are different when what you look forward to most, is your next round of chemo.

While we wait to construct her dream in the backyard, Miki continues to receive well wishes and happy thoughts.  We both thank you for that.  The cooler fall temperatures are another sign of inevitable change, but by next spring, when we are craving the warmth of longer days and we’ll be looking back on this with disbelief.

…uh oh, wait…she just said she is feeling a little better…she is ordering a Strawberry Walnut Chicken Salad from Backyard Burger!...she is flowing again!

My Zen from Home:  “It is what it is.”  I have used this phrase a lot when describing to others where we’ve been this summer to where we are now.  We’ve run the gamut of emotions.  One thing I feel we both have steered clear of is being angry.  It would serve no purpose to dwell in that state of mind and we’ve both been there a time or two and will most likely return.  But we realize, for whatever reason, it doesn’t help the cause.  You don’t have to like it, but don’t let it eat you up.  In a sense, it must be akin to forgiveness.  Like the natural balance of ebb and flow, it is what it is.

The Chemo Doldrums

Well, here we sit like flies on…  You can guess how that little rhyme ends and it really doesn’t have anything to do with what’s going on, it just always comes to mind anytime I’m waiting on something or for something. It’s like this, from my perspective (and we all know a little about perspective) the first few days of chemo we are waiting to see if any nausea sets in.  After a few more days we are waiting to see if any diarrhea rears (sorry) its ugly head.  A few more after that and we are anticipating low white cell count time and steer clear of any germ factories.  After that it seems to be a low energy period when resting rules over excitement and fevers spike routinely.  A few days before chemo begins again, there is an antsy anticipation of starting it all over again, so we live it up before we head down that familiar road again.  At this time we are hoping that her white blood cells are beginning to multiply like rabbits and waiting to see if Miki’s energy gets a boost.

Between ending radiation a while back, dealing with residual side effects and other ancillary surprises, for me it seems to be hard to identify any patterns in Miki’s chemo routine and subsequent days that follow, because nothing seems to be routine other than three days of IV drugs and the chemo doldrums that follow.  On the other hand, Miki realizes that when something unpleasant begins to repeat itself, she knows like a quarterback about to be hit after releasing the ball, that the unpleasantness, the pain, and the discouragement will be there to let her know that it ain’t over and it will happen again.

But that doesn’t stop us from creating excitement and surprises of our own.  If you have kept up with Miki’s blog, you know that we can now look forward to physical therapy (PT) visits, a follow up eye appointment to see if the “natural tears” recommended have helped clear up the shooting stars and streaks Miki has recently experienced, and a trip to a cardiologist to get some answers to her high heart rate this Friday.  Gail the PT will be back this week to share more than her good vibe we got on her first visit last week.  Keeping her eyes hydrated seems to have cancelled Miki’s private fireworks show in her eyes.  And my biggest question, after how could all this have happened to the most health conscience woman I’ve ever met in the first place, is how can she have the heart rate of a humming bird while having the activity level of a three-toed sloth.  Okay, I exaggerated a little… some data shows a humming bird’s resting heart rate is about 250 bpm.  While Miki can still aspire to that number, hers reaches half that without much effort and I am nervous of her head popping off if it gets much higher.  The last and newest encouraging addition to our arsenal of things to help in Miki’s physical comfort is an oxygen machine.  We can now manufacture our own almost pure O2 at home (with portable options if needed) and she has no problem huffing it as much as she wants.  In general, so far, it has been better with it than without it.  It helps her not get as winded with physical exertion, a pain in her back is not as painful with it, and she has a 50 foot tube that follows her all over the house if necessary, so it is relatively convenient unless you are one of our dogs and won’t go passed anything new in their environment…yep it’s great!

On a completely different topic, the tree-like posts that you may remember from the last posting, where Miki was atop them as if a conquering hero, are now vertical and awaiting a permanent concrete base.  David and I dug the 18” diameter by 36” deep holes for the posts Saturday.  What’s a little posthole digging among family?  Not much until you hit rock!  I can only relate this to Usain Bolt running a world record pace and then the track turns to liquid tar the last 50 meters.  It’s going to slow you down.  It did, but we persevered and the holes were made ready.  I then recruited 3 unsuspecting brutes to raise them today.  Shannon, Matt, and Cole had a 9:00 donut date in our backyard, not really knowing what they were really in for.  At the last minute, Cole had to back out due to some story about his car getting stolen the night before.  If I only had a nickel for every time I’d used that excuse to not get a hernia!  Shannon and Matt summoned their inner Cole and mustered the strength without him to move them into position, raise them vertically (the herculean part), and then hold them level while they were staked down.  Now remember, they are SIXTEEN FEET LONG.  When you see them, you will understand our exuberance when they were all in place and no one had blown their intestines through their lower abs!  Good job boys!  Not as strenuous, but just as important, Alice and David helped position the post’s supports that would be staked to the ground to hold them in place and other worker bee responsibilities.  Figuring.  Calculating.  That stuff is what David is good at and what gives me mental hernias.  So all in all it could not have gone smoother, but Cole now has any abdominal protrusions Matt and Shannon may exhibit on his  hands!

David dug the holes...I played in them!

Out popped a lucky Leprechaun that granted me a wish.

I wished for someone to raise the posts instead of me!  Here they are.
 Good job little Leprechaun

The erection crew, I mean wood raisers, I mean big loggers...
you know what I mean.

Double checking diagonals for square, triangulation, the hypotenuse of the
dangle, and the vertex of the rhombus of the onomatopoeia...perfect!

The inspection passes!

If you are going to have a dream come true, you probably would want to witness as much of it as possible and that is what Miki did today.  She positioned her massage table in her office, so she could lie down in a comfortable position and watch out the window to supervise the raising of the posts that will support her tree house dream.  When it was apparent the columns were squared away, Shannon and Matt were inching toward the back gate to leave, and we were finishing up…guess who called and I put on speaker phone for her worker bees to hear and in tears told us good job and thank you?  You’re right.

My Zen from Home:  You know when you have done something long enough and it becomes evident that you are ready to move on to something else or something new?  I had that epiphany today.  While cleaning up a little in the kitchen, shutting the window and closing the curtains for the day…out of the blue…I made the comment to Miki, who was on the love seat watching me, we probably need to wash these curtains.  It was one of those moments that you wish you could reverse your words and draw them back into your mouth as if they never came out.  That phrase, “we probably need to wash these curtains,” is probably one of the last things I ever expected to come out of my mouth, other than “let’s go shopping.”  Not that I am a total chauvinist, but it will be a great day in the neighborhood when Miki resumes control of the galley and relieves me of my concern for the condition of our curtains.  We all have our strengths and weaknesses!

Three Milestones

Milestone   \ˈmī(-ə)l-ˌstōn\

An important event, as in a person's career, the history of a nation, or the advancement of knowledge in a field; a turning point.

Today was a biggy!

My dad was the baby of his family, as I am, and when he passed away a few years ago, his brother Gerald was the one remaining sibling left out of four.  Two girls and two boys from Utah. What I couldn’t figure out for the longest time was how my dad and my uncle could come from the same family.  A picture of them together could have easily illustrated the word opposite in Merriam-Websters Dictionary.  But after teaching a while and having siblings of former students, you start to realize that in most families, siblings that are similar are rare, but it still makes you go…huh?  I have nothing but good memories of my uncle and to be honest, I do not remember that we spent an over abundance of time with he and my Aunt Ella, even though they lived right down the street from us where I grew up in Independence.  I am sure his son Mack and his daughter Barb may take exception to that view of their dad at times, but then mine is one of a gentle man of few words with the ability to fashion a block of wood into a beautifully turned bowl.  As a kid, that amazed me and actually still to this day.  I remember a few Christmas’ where our families got together to eat and sing carols that later blurred into Broadway tunes.  My Uncle Gerald passed away this morning at the age of 101+ and set a milestone for longevity in our family, but at the same time ending that generation of my dad’s family from Utah.

A milestone of sorts was set today as we met for the first time with Miki’s physical therapist.  It seems as though a high number of the people that have lined up to help care for Miki have been picked to fit with this journey.  And Gail just raised the percentage.  As Miki struggled to talk in that tired airy voice she gets, explaining the path that got her here, Gail’s energy almost became infectious.  She made me want to be successful too in doing Miki’s exercises!  I refrained, but she held my attention as she described ways Miki can begin to work on her “drop foot,” brought on by pressure from the mass in her sacrum on a nerve that services her right leg.  This was a long time in coming, but other successes had to pave the way for this opportunity her foot has been waiting for.  GO RIGHT FOOT, GO!  She gave us hope and that is usually followed by a lot of hard work.  GO MIKI, GO!

The third milestone today has to do with Miki’s “tree house.”  The city approved Miki’s dream of being in the trees, which lead to making it a safe place in the trees.  Safe as in The Three Little Pigs safe.  They didn’t want this piece of “playground equipment” to tumble over in a good breeze.  So structural engineers were suggested and we found Joe, a one-man show with his shingle out on Main Street, downtown Blue Springs.  But how do you communicate your 55 year old wife’s desire for a fort, 14 feet off the ground to a stranger without mentioning words like disorder, senility, or just crazy?  With a brief background, Joe was on board and said he would make some sketches to satisfy the city, so a final approval could be given to break ground.  We got those “sealed” sketches today and lets just say that structural engineers make better money than teachers.  I like Joe and he did well for me broadsiding him out of the blue.  He said this was a good break from the normal stuff he does.  This good news lead to the purchase of 4 – 16 foot, 8 x 8 treated posts that will support this dream of Miki’s in our backyard.  Now I know you just read the numbers representing the size of the posts purchased, but know that these are like small trees without limbs.  They are things that would make you do a double take seeing them being hauled down the highway.  They are the item in the lumberyard that is in the corner where most folks don’t go that makes the guy helping you say, “Now what are you using these for again?”  Whoever buys our house someday most likely will need to have a little eccentricity in their lives as evidently we do.

We had some milestones in our life today.  My Uncle Gerald’s struggle to want to be here was silenced today, as what he was longing for was realized.  I hope he is greeted by my mom and dad along with a family reunion to end all reunions.  I also advanced my knowledge today from our engineered drawings and learned I should have made a different career choice, financially speaking.  And we are at a turning point with Miki’s foot, as we welcome Gail to the healing team and her foot finally begins its journey back to full functionality after a brief time off.  Big Day!

My Zen from Home:  I was thinking just now that there should be a word for milestones that are little…like mini-stones.  It seems we tend to notice just the big markers in life…births, deaths, birthdays that end in “0’s.”  I look at Miki each day and see a mini-stone in her energy level or we talk about what feels differently in her breathing that I cannot see that is a mini-stone.  The big things are great, don’t get me wrong, but it seems like without the mini-stones, there would be no milestones.

Mini-stone...getting the lumber into the backyard through the gate without
scratching the car.

Milestone...getting Miki on the posts without her getting scratched!

Just Another Day

Another day comes to a close.  What a day!  Busy day!  A good rainy start with a clearing finale, just in time for the final day in the Tuesday night golf league I play in with Shannon.  Since you brought it up, WE WON THIS YEAR!  Last year, we came in second to our archrivals and two of the nicest and skilled golfers in our league, besides Shannon and myself.  This time they came in second, by the hair on my chinny chin chin.  Shannon and I have done this a few years now and I enjoy getting out and visiting with him to catch up on school news, science news (he too is a science teacher), his family news (Megan, whom I taught with, Marie, Maisy, and Lincoln), and any other antics he has been up to.  It has been fun watching his game get better over the few years we have been playing together.  That must be why we won this year, cause my game is pretty much the same…pot luck!

As this day winds down, I took out a loaf of bread my cousin Krissy made from the same recipe that my mom used when I was growing up.  As soon as she handed it to me last night, the smell of my childhood surrounded me and took me back to watching my mom mixing and kneading and shaping and loving every loaf of bread she made.  The smell of rising dough meandering through the house followed by getting a warm piece right out of the oven takes me back to when I used to be in heaven with a loaf of Wonder Bread.  Homemade whole wheat bread was an acquired taste for me, but acquired rapidly.  So tonight I warmed it, buttered it with an insane amount of real butter, and ate it as the butter bled through to the underside.  Sorry Wonder Bread.  Thanks Krissy, good timing.

I’ll stick with the family theme.  As Miki and I have transitioned from hospital visits and the initial unknowns to slogging through a cancer treatment regiment, the constant of family and friends have been our anchor.  Shoot, some of our friends are like family.  But there is nothing like blood family.  You gotta lov’em and sometimes you lov’em a little less or a little more than others, but you always lov’em.  Both sides of the family have been our Three Bears to our Goldilocks… just seeming to know how much we’ve needed from them and when.  As the “itch” arises for any given family member, it gets itched.  Our friends have been so respectful of the varying levels of Miki’s needs as this journey continues.  From her taste buds to being available to “Miki-sit,” there is no end to what our friends have offered up in support from their corners.  Hugs to all of you, THANKS, and don’t go anywhere!  It ain’t over til it’s over. 

For me and my family, Miki, Tuck, and Tooga, we continue to define and redefine ourselves as each day ticks by.  For Tuck and Tooga, they know that “momma” isn’t giving them their “normal” treat routine since “dad” has taken over that role.  They still haven’t figured out that it is beneficial to get out of the way of a wheelchair as it runs into them and that Miki’s extra two legs (the crutches) don’t match her original ones, as she navigates their beds on the way to the bathroom.  Thank goodness their brains are larger than walnuts and even though they don’t care if she wears a Wonder Woman outfit or not, they know their momma and will lay their heads on her knees to melt her heart into an extra treat or two.  That hasn’t worked for me for some time now!

As our family talks each day, the dogs on a limited basis since their brains aren’t that much larger than walnuts, the “elephant in the room” that occasionally is recognized, is the question of living.  Medical people will allude to it with the question of do we have a will yet, power of attorney, and the like.  Our friends and family have surely visited the question in their own minds, if not out loud to someone else.  Miki and I do acknowledge it every now and again and I can tell you that no one wants to stay in this world more than my Wonder Woman.  I feel that I have been fortunate in that I haven’t felt the need to dwell on it for whatever reason, it just does not appear on my plate right now.  There have been a few occasions when it has tried to serve itself up, but the thought never seemed to last.  I kind of relate it to the discovery of her cancer before it was identified.  I wasn’t going to get all excited about something we knew nothing about.  I take my cues from her and right now, she likes it here just fine.  The “what-ifs” are kept at bay, since nothing good comes from a “what-if.”  We only have what is here, right now.

Now for something completely different...

Us Through Dr. Suess’ Eyes

We have family solid as wood

We would not, should not, trade them. Good!

For each is special far or near

They rank right up there with good beer.

We love them each, we hope that’s clear.

To our friends we thank you too

Love you, love you, love we do.

From food suppliers to weed pickers

Miki-sitters to I.V. stickers.

From ups and downs, left and right

Hang in there with us, future’s bright.

Food runs for Miki, chemo across town

1 round, 2 rounds, 3 rounds down.

Taste buds call’in, what this time

A refried bean smoothie topped with lime?

She’s special in so many ways

She’s bald, she poops, cribbage she plays.

Her cells don’t play as well with others

Soon they’ll learn if she has her druthers.

I love my Miki, I love her bunches

She’ll soon be back to doing crunches.

Walking the dogs and spoil’in them rotten

Putting the dishes back from where they’d be gotten.

I picture you whole, I picture you well

I picture you healthy, every little cell.

I love your head, I love your commode too

I love sitting with you, I just love you.

My Zen from Home:  5 things I look forward to…the sound of rain…opening the shower curtain and feeling cool air wash over me before drying…more good days than bad…Tuck and Tooga playing in the backyard…seeing Miki everyday.

Ramblings on Perspective

Everything we see, we see slightly differently than anyone else at any one given point in time.  To be picky about it, if Miki and I were pouring over a piece of art hanging on a gallery wall (which I do frequently!), we both are looking at basically the same image, but the angle at which we are viewing it is not exactly the same, the shadows may be slightly different due to the angle at which we are viewing it from, yada, yada, yada…  The point being is that we all take this world in from a little different perspective than anyone else.  What makes one-person stay and stare at a piece of art and another walk on by?  What brings tears to one person’s eye at the movies and another want to gag?

If Miki says she is gaining weight and I feel she has lost weight, we can prove that by getting on a scale, but if a scale is not available, who is right?  I guess it really isn’t about who is right as much as it is about both of us being right.  We both are seeing from different perspectives.  We are both right.  I’m not in her skin and cannot feel what is motivating her to say she is gaining weight…when she has clearly lost weight.  Oh, right…it’s not important that I am right, sorry.  If someone answers 3, to what is 1 + 1, in their mind they are right or they would not have said it.  We all think we are right about whatever it is being questioned; it’s how we view it.

This whole topic came to mind as I talk with Miki day in and day out, listen to her answer questions from the doctors and nurses we come in contact with, and see how she handles concerns and observations from our friends and family.  We are both seeing this whole cancer thing through our own eyes.  My view is not hers, which makes what she finds not important, is concerned about, or gets excited over may vary from somewhat to greatly than me.  What I am learning to remember is that whatever my perspective is, is not the one that counts.  It helps me see the overall picture, but what is seen through her eyes is what is painting the picture.  We’re both right…but she is more right!

It took me a little time to wrap my mind around the “tree house,” using her pre-chemo hair to make braids to pin under a bandana to give the illusion of hair, and the fact that her taste buds play musical chairs with what sounds good by the hour.  But when I stop and try to see through her eyes, its okay and I shouldn’t try to make it about me.  I guess this is another way to look at “walking in someone else’s shoes.”  She may not get the “Hobbit” tree house she sees in her drawings, but we can agree on one that I can build.  She may have a beautiful baldhead, but I am sure she misses having hair.  And I know that she loves to eat and her taste buds will relinquish control in time.

Maybe what made all that possible would be our communication.  Not that we are both great communicators individually (cause you know I love to talk and express myself so much!), but that if I try to view the importance of the tree house through her eyes (having something to focus on during this impossible time and a dream that began a long time ago) vs. mine (geez…the permits, the work, the sore muscles, the what if’s… will she really use it, will it tumble over in the first autumn wind, will the squirrels commandeer it for the winter) and she sees some value in my devil’s advocate point of view, then we come to a meeting of the minds and it becomes reality.  (Please don’t judge my writing skills on that last sentence!)

I don’t know…it just seems like if we walked around with the understanding that everyone’s perspective is valid through their eyes, then we might understand how we view them through ours before passing any kind of judgment or opening our mouths then wishing we hadn’t.

I am not sure where I wanted to go with all this, but in the situation Miki and I find ourselves in, I can’t imagine putting my needs in front of hers or pretending to know what she is going through.  But from my short time at the cancer center, it is apparent not everyone has someone to go through this with and not everyone who has someone is treated the way I would want to be treated.  So if Miki wants to wear a Wonder Woman theme or a blue faux fur, hunting hat, then sobeit.  She has carte blanche from having a recliner in the backyard to a tree house in the sky, from taste buds calling Dairy Queen to hauling ass to Whole Foods, or from one commode cleaning a day to twenty-four.  It’s all about perspective.

My Wonder Woman!  The last day of the
3rd round of chemo.

Attention…Disclaimer Alert! 

I know DISCLAIMERS usually come at the beginning rather than the end, but after having read this back to myself, I feel I owe it to you to say I didn’t really mean to vomit all these words at you that I hope we take for granted.  I meant to write something humorous, but instead it seems as though I have gone down the rambling hole.  I think crazy people do things like this!  The gateway rambling to a manifesto! Ha!

My Zen from Home:  Needless to say, Miki is pretty high maintenance right now (from my perspective) and even though she needs to focus on other things to get her through this journey, I have found that the tree house has become a good focus for me too.  Having something to take my mind off of the day-to-day stuff, the chemo cycles, and just how nasty what must be transpiring inside her body has taken up some of my imagination, so it doesn’t wander to far.  I can see how the idea of a hobby, an outside interest, or being goal oriented can get you through things and times that could be miserable or seem to drag.  Her list of things for me to focus on seems to be growing!

I also "focus" on getting back to the mountains to fly fish and I am hoping
my new "Trout Taxi" will take me to some great spots.

Bonus Photo!

After hitting our local Fall Fun Fest, Miki
succumbs to the funnel cake/fresh lemonade
hangover...a flashback to her college days for sure!

An Inspired Observation from the Infusion Room

Doing whatever it is that I do day in and day out, I have a lot of time to sit, watch, and listen.  These three observations come from sitting, watching, and listening (or eavesdropping in some cases!).

#1

Okay, let’s get this out of the way…I teared up today.  At the cancer center where Miki receives her chemo treatments, they have a tradition where those that finish their scheduled chemo treatments ring a bell the size of a small melon, in celebration of their personal victory.  A young black woman proudly gave the bell her best as everyone else in the infusion room applauded her accomplishment followed by the staff lining up for hugs and well wishes.  If I am tearing up now for a stranger, I will be a mess when Miki takes her turn at The Bell.

#2

Shortly after this whole journey began…after Miki became very dependent on me and others, then her voice raising to the equivalent of a child’s, and then losing that thick head of hair, she seemed to slowly take on the persona of a child.  Sometimes sweet and innocent, other times a humorous little imp.  In a way she became the child we never had.  She always says thank you for everything I and others do for her, but in that short moment, with that little baldheaded upward glance, she has an innocence and a gratitude about her that is priceless.  I will gladly take back the Miki that I hope replaces the little imp, but I will miss the child-like character that has emerged.

#3

While still teaching and usually during Parent/Teacher Conference time, when talking about the future of a student to a worried parent and even the student themselves, I usually would say something along the lines of…”They will figure it out and do something they enjoy.”  One of the parts of teaching I didn’t like was the not knowing how all the kids that passed through my door turned out in the real world.  Being at the cancer center a few times now, I have seen a number of people that have found their passion and it is taking care of others.  They figured it out.  Three in particular at the cancer center really stand out.  Their names don’t make a difference, but their actions sure do.  During the few visits we have had so far, I’ve noticed this group of nurses wearing a fair amount of different “hats.”  Other than teachers, I have not witnessed this to this degree before.  Not that there aren’t others that are this compassionate in their professions, but I haven’t seen it on the fly as I have this week in person, while Miki received her chemo.

The care with which they go about their duties of hanging and administering life changing drugs just makes this whole process that much more tolerable.  To connect with a student in a nonthreatening way, I use to kneel down to be on their level…eye to eye.  These nurses don’t hesitate to sit down, eye to eye, to connect and let their compassion lead the way in helping calm nerves, communicate a protocol, or discuss an unpleasant side effect, with the touch of their hand on the patient’s arm without judgement .  You would think that this is automatic with someone who chooses to give in this way, day after day.  Think again.  But these ladies make everything okay.  I’ve seen them share personal grandbaby stories, help a patient work their way through severe nausea, and sit with a patient on the verge of “losing it” as they go through what seems like an insurmountable struggle.  They make everything okay.  They put up with “characters” that would make you blush or wet your pants, but its all good in the end.  I’m not even the “sick” one in the room, but I feel comfortable knowing they are here and watching them go about their business.  The business of caring.  How is it in our society a professional athlete receives millions of dollars for their prowess and those that care for a living get a fraction of that.  We’re doomed!

Thank you to those that put a little extra into your job description that isn’t in black and white.  Putting a little humanity out there, where there wasn’t any before you.  You are why our species has lasted as long as it has.

WOW…(deep breath)…didn’t realize I built myself a soapbox for a minute.  That’s how good these people are though, that are taking care of my Miki.  No matter how good or more importantly, how not so good Miki’s day is going, when she walks into the infusion room, you just know that everything is going to be alright soon, since you are made to feel like you are the one and only patient they have for those hours you are theirs.

My Zen from Home:  The first measurement of Miki’s progress from her radiation and chemo treatments came this week.  Our Chemo doc shared the CT scan results with us Tuesday.  I was holding out for the possibility on the off chance that it would show nothing…literally…no tumors where there were some before.  I got part of my wish, because a few of the smaller “shadows” were gone!  The progress on the other major players, were not quite as clearly defined, due to how they are measured at Centerpoint, where the first scan was taken and this scan taken at our cancer center.  Kind of like driving in rush hour traffic…some forward progress is better than sitting still in the middle of an interstate.

Rorschach Test...what do you see?

I see a nun in her habit...okay not a typical habit, but imagine it in black and white.

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.