"Chemo"...having to do with chemicals.

I know this probably hasn’t happened to anyone but me (if that is true then just play along), but…you know when someone puts something you want really bad just out of reach and you lunge for it, only for them to yank it out of reach…and you want it so bad, that you reach for it again.  You are more nonchalant this time so as to make the jackass teasing you think you really aren’t interested.  You pounce again, only to be rejected over and over and over again, as they tug your reward just beyond your grasp.  Damn that bartender… (did I really just say that?) That is how part of this journey has felt to me, with Miki’s diagnosis and treatment…and I am not Miki.  I cannot imagine what she has experienced, although if you have been following her, you know about that more than me.  I have not been a loyal follower of “Mikisjoy,” other than the occasional read.  Not sure why, other than I live it with her everyday and when I do have the time, I am sharing my version or sleeping, unlike Miki the night owl e-mailer and blogger extraordinaire. 

Hoping 3^rd times a charm, we are back at Centerpoint Medical Center (I think I have been referring to it as Centerpoint Hospital).  With her pain level too high when sitting up and her first chemo treatment looming, she was welcomed back to “the point” so she could be horizontal, while receiving her first round (by the way…the word treatment…treat does not seem appropriate here).  Evidently our outpatient facility (or maybe all of them) doesn’t want you to be that comfortable, or maybe there is a medical reason that hasn’t surfaced yet as to why they don’t supply an occasional bed…maybe it is a space issue.  But I am thinking, for what they are getting paid for this, they could squeeze in a cot or something for the prone position.  But I will inquire.  You know why?  Because inquiring minds want to know!  And I am nothing, if not a national inquirer.

Having had the privilege of being a “direct admit,” for the third time, we have experienced passing GO and collecting $200 each trip around the board here at Centerpoint.  Since we are in their system and evidently have frequent bedpan miles, we go straight to Miki’s room without getting sent back two spaces or paying a fine.  This time as we came off the elevator on the 6^th floor and headed passed the nurses station, we waved at our favorite nurse, who excitedly waved back and she immediately requested Miki for tomorrow’s shift, while we settled in to room 609.  Yes, we play favorites for various reasons, but I can easily find the “Nutrition Room” to get ice (for Miki) and a soda pop (for me) with my eyes closed, from any given hallway on the floor…we’ve now had a room in each.

Not that 12 days in a hospital is all that many, but for us, for the most part, having been on the other side, being the visitor vs. the visitee most of our hospital career, I am ready to be done with it and I know Miki is on the same page.  I don’t want to diminish the seriousness of what Miki is experiencing, but there are some SICK people here.  People that no one would want to trade illnesses for.  I am thankful that Miki will be helped here and will work her way back into some kind of normalcy.  For some of these folks, it appears that is not an option.  I have been struggling with all the pain and suffering…I take that back…I have been more aware of the number of people struggling with their health.  I count myself very lucky.

Finally, a tip of the hat to how strong Miki has been.  It has been approximately 2 months since this game began.  60 days on pain meds that have some side effects we see and some we don’t.  The dry mouth that keeps her reaching for ice chips, her fingers and toes twitching as if to music, but there is none, and a parallel universe, as she describes it, when she closes her eyes and another world carries on.  Eight weeks of a leg segregated from the rest of her body, a few moments of emotional collapse, and coming to grips with a healthy lifestyle that has not been a detour around this obstacle.  Yet she is her own best cheerleader and has attracted a crowd of positive participants.  As if the wave done at a sporting event is the love and support she has attracted, the wave just keeps coming.

As the first drips of her chemotherapy make their way into her body, we cheer for Team Etoposide/Cisplatin (the chemo cocktail) to find the opposition and give it a good ass whoopin’!  A necessary evil, but we cheer for her to be stronger than Wonder Woman and to come back to us whole.  "Chemo" means having to do with chemicals. It is usually a prefix on a bigger word like chemotherapy.  It has begun.

Wrapped in her cocoon, infused with love, treatment begins.

 

My Zen from Home:  Those of you that know me, know me as a huggy, touchy feely kind of guy that wants to know your deepest, darkest emotions, and in turn will share mine with you…NOT!  But it has occurred to me that I have not been touching Miki as much as I want or need to.  I think some of it is because of the gravity of this situation we find ourselves in and I need to remember to feel a little more and take a break from the seriousness of it all.

Our Onion

As this journey began, it was apparent that many answers to our questions would take time and come in many forms.  As if peeling back the layers of an onion, we slowly started getting to the core.  Layers came off in the way words were chosen carefully, a look, body language, voice inflection, what was NOT being said.  My Intro to Speech Class 101, from 9th grade has finally paid off.  Visiting with doctors over the last month has heightened my observational skills (or at least I would like to think so) and from piecing together the information that we were not told until now, I can't say we were totally surprised by what we learned.  Evidently we have taken enough layers off to get to the core today, when we met with a new oncologist from KU Med. Ctr.  Her name is Dr. Chintala.  It appears that the pathology results point to a kind of mixed lung cancer.  It does have quite a long descriptive scientific name, with words that tease my spell check, but for us lay people..."mixed lung cancer" is as plain as it gets.  She visited with us for for a healthy dose of time and will return each day as a plan comes together for confronting Miki’s pain and dealing with the cancerous tumors we are aware of.

The one thing we have been looking for this whole time was a culprit.  Now that it appears to have been identified, a name has been placed with a face and it appears that it is a scary face.  It won't be a piece of cake, but the outcome is promising.  While we are still processing this news, the initial scare is still there, but now it feels like some of that fear is turning into a sense of “opening a can of whoopass” and like you would expect, we want to get on it and Miki is leading the way.

While this news to us is still only hours old, I go through the corridors of this hospital and can’t help but wonder how may others I am passing have the same thoughts and feelings running through their minds, because they too are rookies to this game.  While others may be veterans I walk by and are on a whole other level than we are at this time.  It feels so personal, like we are the first to step out onto this playing field, yet we know that it is one of the oldest games in town, and we owe the benefits that will help Miki heal to those that have come before her.

Like a real onion, whose enzymes permeate and diffuse into the air causing many of us to cry, this onion causes tears too.

My Zen from Home:  You cannot worry about what you cannot control.  In a past entry I talked about having control over things.  For me right now, it is taking care of the house and not accepting any help with it, yet.  When I was teaching and had a kid that was making all kinds of wrong decisions for themselves, when it boiled down to it, they had no control over anything in their lives.  They were acting out to be in control of something.  One of the first things Miki and I talked about after the doctor left, after delivering our future, was you can choose to be depressed and negative or upbeat and look forward.  We don’t control the existing cancer, but we do have control over how we react to it.  Guess which direction Miki is choosing.

How Do You See It?

While we continue to whittle down the time until the results of the last test to date on Miki’s biopsied lung arrive, perspective has been on my mind a lot.  Since Miki was admitted to Centerpoint Hospital through present time, my perspective and attention to everyday folks facing their own dilemmas has become more acute to me.  Miki has been so damned positive since the onset of whatever it is that has invaded her body and that she will “walk through this,” that I have been trying to keep up as we go down that road together.  In fact, I feel like it doesn’t matter what I think is happening or how it should be treated, I need to support whatever attitude she adopts and help prop her up as needed.  I probably wouldn’t make a very attractive cheerleader, but it’s a hat that I’ll wear (better a hat than a spandex leotard!)  And because of that positive forward thinking, I keep comparing others to her.

It is all about perspective.  For example, when I ride my bicycle, part of my loop is a stretch of about 3½ miles on a trail that follows the eastern shoreline of Blue Springs Lake.  As I was riding this evening with the sun getting close to the horizon, the shadows were long and every twig lying on the trail was a snake in my mind.  A poisonous snake, that was waiting for the chance to take a shot at my muscular calves… well, okay… my calves.  Now of course, logically I knew better, but where do those thoughts come from.  Maybe it was the 4 foot snake that I saw a few days ago, slinking off the trail as I whizzed by it.  I saw about 3 feet of it still on the trail, so there must have been at least another foot into the brush already.  But if perspective is how you see or view things around you, my take on snakes is a bit paranoidal (yes, I made up that word from my perspective).

This morning, while Miki and her congregation were convening for “couch church,” I headed out for a motorcycle ride for my church.  It was relatively cool, considering it being the middle of summer, and I was just out cruising without a plan or destination.  At this point in my worship service, I was in Independence, close to the Truman Library, and I came across a man standing on a street corner.  He had on a shirt too small for his size, hair that had not seen a comb for some time, and was facing a brick retaining wall with his back to the intersection and to me.  Normally when I see people in a similar location, they would be waiting for the light to turn, cross the street, and be on their way.  Not this guy.  As I got closer and was able to glance across to see what was on the other side of him that had been previously blocked by the overstuffed shirt, there were 6 bottles of what appeared to be Bud Light, all lined up on top of the brick retaining wall.  Lined up as if sitting in a church pew.  I could have seen myself staring at such a spectacle too, but he was carrying on a conversation and was pointing at one in particular.  By that time I was motoring passed, repeating…”Please don’t break down.  Please don’t break down.  Not here, not today!”  I’ve never had a monologue with a beer before, but if I had, I’d hope some serious help would follow.  I continued on.

This evening I ran to the store to pick up some grocery items and to grab a quick bite to eat while Miki was sleeping.  Taco Bell.  Not high on Miki’s list of acceptable fast food joints, so I don’t get to Taco Bell very often.  I was ready to get crazy.  I am all excited to order 3 Taco Supremes as I pull in behind a woman in the drive through lane.  The evening is cooling off nicely, the car windows are down, and now I am lucky enough to witness the ordering of  a meal that does not exist at Taco Bell.  The woman is ordering her dream meal by describing it to the poor guy on the other end of the microphone/speaker.  I can only imagine viewing his reaction, as he politely explains for the 3^rd time that they have no meal by that description… as he begins to beat his head against the cash register.  And then as if a light comes on above her head and the previous 5 minute description of a meal with Spanish rice evaporates, she orders a Nachos Bell Grande and dejectedly pulls forward.  At this point you could have taken her car from her and she would not have cared.  She wanted her Spanish Rice Taco Bell Dream Meal, that she was sure they had, but that is all it was…a dream.

Everything is relative and we all wear glasses that shape our perspective.  Since this journey began, my perspective has evolved from thinking this won’t take long to fix (comparatively speaking) to… what the hell!  A good day is when Miki’s body is in sync with her meds.  A good day is when I get the mail and there are no medical bills to confuse me.  A good day is when I don’t imagine snakes all over the bike trail (it is really not that bad, I am making myself sound like I may be the brother to the beer preacher or cousin to the hallucinating Mexican meal woman).  Miki would probably tell you that all of her days have been good since this all started.  Me… I will just nod my head in agreement.

My Zen from Home:  A nice perk to being the husband of a “sick” wife, is that people ask how you are doing too.  How are you holding up?  Is there anything we can do to help out?  If I were a smart man, I would make a list and pass it out to those friends and family that know better than me, that there are things I should ask for help with.  Why is it, that I want to do everything I possibly can for Miki?  I don’t need any help right now, I tell those that inquire.  I can do it all, I am thinking.  That thought has lingered in my little head since the first few offers of help came in.  A few days ago I figured it out.  An epiphany (I’ve not had many!).  By definition, an experience of sudden and striking realization.  While washing the dishes from the last two meals after putting in a load of laundry, while taking a break from vacuuming to get Miki some more water and some fresh ice chips, it hit me… I can control these things!  I can determine if I do whites or dark colors today.  I can wash the dishes after breakfast, lunch, or dinner…or not at all.  I can control the level of the water in her water mug and the amount of ice she uses to keep moisture in her mouth, since the painkillers have a funny way of eliminating it.  BUT, I cannot control her pain or the distance she can walk without taking a break.  I have nothing to do with her appetite or the muscle atrophy in her arms and legs that carried sheets of plywood onto the roof of our old house.  And I cannot control the “drop foot” and cramping that prevents her from riding her motorcycle on a cool summer morning.  So while I am able, I will control as many things as I can, until she can join back in the fun.  So for those of you that have offered, it is and will always be appreciated, but for now, no thank you.

P.S.  You have just finished the 100th post on Walliebloggin'!!!  You have got to find something better to do with you time, but thanks for coming along!

Hurry Up and Wait...

It has been 31 days since Miki crawled out from the back of the car with the dogs, arriving home from North Carolina.  The onset of her right leg cramping, the drop foot dropping, the hospital stay with great care, the medical bills arriving like get well cards, the weekly visits to receive no news, and me becoming a caregiver as time goes on.  Now don’t laugh too loud concerning the last one on the list.  It has taken patience, humor, creativity, patience, compassion, anger, sleeplessness, patience, courage, and a number of other character traits to see Miki slip in her physical strength, but not in her resolve to beat whatever it is that is ringing the doorbell and running away.  It almost sounds as if I were describing myself while I was still teaching, or like I have referenced before, what it must be like to be a parent.  But at least for most parents, you wouldn’t be worrying about how fast the tumor is growing or how fast the cancer is spreading.

During the last 31 phases of the moon, in the back of most of our minds, the question has been what kind of cancer is it?  And today, we are just as close to knowing, as we were 31 days ago.  We know the spot on the lung has not gotten any bigger, so at least it does not appear to be growing any too rapidly.  The sacrum would require another MRI to make a comparison, to know if it is changing.  That would expose Miki to more radiation than is necessary at this time, so we wait.  We wait on the results of one test that our oncologist appears to be putting all his eggs into.  When you have cells that like to disguise themselves and seem to be unknown, they must be compared to others that are of known origin.  That is what we are waiting on.  A “molecular study.”  And as we discussed this with the doctor yesterday, it didn’t take me long to realize I was needing a medical knowledge life preserver, when I pursued trying to understand the biopsy testing that was being carried out to identify these damn cancer cells.  At that point I accepted the life preserver and knew I just had to trust.  Just like taking my car to an auto mechanic and asking him to fix that noise coming from under the hood.  It was out of my hands and I had to trust he would do the job and do it right.

So, we hurry up and wait.  31 sunrises and 31 sunsets.  Waiting to get out of the back of the car after a thirteen hour trip.  Waiting for pain relief.  Waiting to find out what the cause of the pain is.  Waiting to learn more about the cause.  Waiting to wait while we wait.  During the wait time, there have been some really great connections though.  Connections between Miki and family, Miki and friends, Miki and me, Miki and Miki.  The outpouring of support has been tremendous.  It has been flowing in the form of kind words, actions, tasty sensations, sounds, hugs, and ice.  And Miki has made it clear that you don’t even think about her, unless you have a positive thought in your head at the same time.  So the wait time is filled with you and good mojo.

Over the last 31 rotations of the Earth, as word of Miki has spread through networks of friends and family, there are the coincidental connections too.  For example, we have some neighbors, down and around the way, we met though walking our dogs in the park.  During this last week, I met David on his way to work almost everyday, as I was walking our dogs through the neigborhood.  It was always within about 25 yards of the same place every time.  The first time he slowed his big red truck down and stopped, I brought him up to speed on Miki and the last few weeks.  Since then, it seems like at least every other day we meet and he always begins with, “How’s your wife doing?”  And he always finishes the same way, “Tell her we’re keeping her in our thoughts.”  Now when I see his wife, Kathleen, walking their dog each morning, I can almost feel the good vibes she sends as they pass by our house, 75 yards away in the park.  My old team from Brittany Hill has spread the word through their families, Miki’s Healing Touch network of friends has spread her story, and slowly but surely our teaching community is hearing about this as each day passes.  For something that you usually don’t shout from the mountaintops, it is amazing how caring and support seeps out, like water filtering down through the Earth, all the way back to you.

Today we make a conscience effort to get organized with our records, receipts, reports, and other “r” words that will help get us though this event.  We’ll try to make nice with our insurance company as we try to make sure they are supporting the financial end of this journey.  And we begin to come to grips with decisions that we will be making in terms of hospitals, doctors, and treatment, it begs the old question of…What to do when you come to a fork in the road?… Take it!  Miki will lead the charge down which ever "fork" she feels is best for her.   And as we all second guess and Monday morning quarter back all we want, it is not our path, it is hers.  You don't have to like it, just respect it.

My Zen from Home:  We are all caregivers to some extent every day.  You see it at the grocery store when someone gives their cart to the person behind them, who is waiting to get one.  You see it when someone motions to a car to pull out in front of them, so they don’t have to wait for the traffic to clear.  You see it in the unselfish acts people do every day when they put another person before themselves.  You can also feel it in the smiles, touches, and thoughts you put out there each day.  Don’t forget to dish it out to those closest to you also.  They may be the ones being overlooked and need the care the most.  Now, so you don’t think I have gotten soft, here are a few funnies…

No News Is…Well…No News

So what do you do while waiting for the pathology on a biopsy to be done?  Sounds like this could be an intro to a joke, but I could not come up with one, but others have, so here is one I thought was humorous…

Five doctors went duck hunting one day. Included in the group were a GP, a pediatrician, a psychiatrist, a surgeon and a pathologist.

After a time, a bird came winging overhead. The first to react was the GP who raised his shotgun, but then hesitated.

"I'm not quite sure it's a duck," he said, "I think that I will have to get a second opinion." And of course by that time, the bird was long gone.

Another bird appeared in the sky thereafter. This time, the pediatrician drew a bead on it. He too, however, was unsure if it was really a duck in his sights and besides, it might have babies. "I'll have to do some more investigations," he muttered, as the creature made good its escape.

Next to spy a bird flying was the sharp-eyed psychiatrist. Shotgun shouldered, he was more certain of his intended prey's identity. "Now, I know it's a duck, but does it know it's a duck?" The fortunate bird disappeared while the fellow wrestled with this dilemma.

Finally, a fourth fowl sped past and this time the surgeon's weapon pointed skywards. BOOM!! The surgeon lowered his smoking gun and turned nonchalantly to the pathologist beside him. "Go see if that was a duck, will you?"

So this helps me understand some of the jobs of the doctors I met at the hospital.  The pathologist does all the work figuring out what is causing things to happen (tissue diagnosis), kind of like a crime scene investigator.  So whatever was seen in the MRI that was concerning, a piece of it was taken (the biopsy) and the pathologist determines what it is, so it can be dealt with.  So we wait.

So what has happened that I haven’t shared with you yet?  The news that hasn’t made the news yet, if you will.  Are you ready?  We sold the “doghouse!”  If you have not been paying attention, the doghouse refers to our 5^th wheel trailer we bought to travel with the dogs.  It gave us plenty of room not to trip over one another while moving about inside it and gave us plenty of storage for traveling, including all the dog stuff, so it became known as the doghouse…not because it is where I would spend my time when my welcome was warn out around Miki.  That would be called Hell!  Just teasing Mik.

So yes, the doghouse is gone, to a lovely older couple from Junction City, KS.  The back story is, a couple of months ago now, we both came to the conclusion that our priorities have changed.  We have not made any attempt to try and find seasonal work at a national park, which we thought we might.  We have not been on the road for extended periods of time, which we thought we might.  And there are things we enjoy being “home” for that have made our traveling less extensive at this point.  Miki continues to enjoy her energy work with her clients and I enjoy being retired, which interprets to playing golf and anything else whenever I want.  When I put it that way, I sound like a bratty baby…but I guess I am good with that.

So how do you sell a 38’ home on wheels?  You look to the internet for clues.  I looked around for comparable trailers, prices, and other helpful pieces, like would I consider delivering it to the new owners?  So the waters were tested on Craigslist, since I knew not what I was doing.  It is pretty basic and not hard to list it with some photos, inside and out.  This was all done the week prior to Miki’s admittance into the hospital.

In my selling research (Craigslist and eBay), it became apparent I was not the only one trying to unload an RV.  There were pages and pages of others doing the same thing, so why would anyone want mine over another’s?  I was burrowing in for the long haul.  The first day we checked into the hospital, I got a call from a couple from Kansas, inquiring about our trailer, this is less than a week after I posted the ad on Craigslist.  I excused myself from the hospital room and went into the hallway to be alone, except for the patient monitors beeping and chirping about.  So I found myself on a gurney at the end of the hall, talking fiberglass, pin weight, and slide outs.  Remember, that morning brought us an MRI that got the doctors all excited, we were hurried off (sort of) to a hospital, and now I have turned into a salesman doing business on the 4^th floor of a hospital.  I am torn in two directions because I want to be with Miki as she settles into room 427 and yet I never thought I would get a serious buyer on the other end of my phone, let alone in less than a week.  They were coming to KC in a couple of days and would like to see it.  Fine.

The next day I get a call from the interested party from Kansas.  They were on their way to KC to see two other trailers they saw on Craigslist and wanted to see the trailer if it could be arranged.  I happened to be at home from the hospital tending to the dogs when I received the call.  They were 30 minutes out and while I wet my pants, I gave them directions to the house.

Now what I haven’t told you yet, is the trailer has been covered up since last November after we put it to bed, following our last trip.  It is parked next to the house in a somewhat tight spot that Miki has always helped me get in and out of.  Directing me, so as to not back over the fence, scrape the house, or take out our gas meter.  I am not going to relate this situation to those people that have been caught up in desperate times, when they exhibit superhuman qualities like strength to lift an automobile off of some poor sap that didn’t correctly support his car on jacks to start with, but what I did in 30 minutes to prepare my RV for showing was pretty impressive.  If to no one else, then to ME!

I climbed up on the trailer’s roof, after unbuckling the cover straps, thinking please don’t let me fall, only to become Miki’s next door neighbor in the hospital.  I threw off the cover to the side.  Hooked up the trailer to the truck.  Gingerly pulled it out without destroying the fence.  Parked it in the driveway and set it up for showing, just as they arrived.  Despite the fact I looked as though I’d just showered with my clothes on, I gave them the tour and then left them alone for a few minutes to marvel over our doghouse and snuck in to put on some fresh deodorant.  They seemed genuinely interested, but soon left to go see the other trailers on their list.

I showered and headed back to the hospital, as Miki has no clue what has just transpired.  She thinks I just went home to do dog stuff.  Shortly after arriving back at the hospital and bringing Miki up to speed, I get a phone call from my new Kansas friends and they make us an offer…we do the car sales “dance” for a minute…we come to an agreed price and we are soon to be doghouse-less.

They want to come back and get it Friday (it is now Wednesday…keep up) and they will wire the money to our bank.  Thursday morning I get a call from the new owners.  We get the money transfer details squared away and they are on their way to pick it up.  It is THURSDAY…I thought they were coming FRIDAY.  That is a 24 hour difference for me to get it ready, the stuff we are keeping out of it, and dig up the stuff we take out of it for the winter back into it.  Some of you remember my wife Miki, she is in the hospital.  I should be there with her!  But instead, I leave in the afternoon to head home and make this final.

I get home and say goodbye to the doghouse, just as the Kansans pull up with their big Dodge dually.  Since they have owned a 5^th wheel before, we hook it up, go over some operational trailer things and functions, bring the slide outs in, and raise the jacks that hold it off the ground. They rise as far as they will go (putting the weight on the truck) and they are still resting on the plastic blocks on the ground.  In other words, it is not ready to pull away, since the legs still have weight on the ground.  I start envisioning all kinds of things, like it being left in my driveway!  Cooler heads prevailed (his head actually) and he slowly pulls forward, as the jacks slide off of the plastic blocks they were sitting on and the weight now is totally on the trailer.  If you have no clue what was just described, all you need to know is…crisis averted!  I throw the plastic blocks in the belly of the trailer and the doghouse is off to it’s new home.  It’s funny, as many obstacles as the trailer threw in front of me, there is a small part of me that will miss that behemoth.

So after juggling trailer sales with hospital visits, I was able to settle down and focus on Miki.  I would not have chosen to have done it that way, but to have sold that thing in a few short days with the tons of other trailers available, we both feel very lucky and relieved that it is over and done with.  So the plan now is actually the original plan for traveling after retirement, which was to put our motorcycles in our trailer (an enclosed trailer we purchased a few years ago for this purpose), along with whatever other “toys” we want to travel with, and hit the road.

The real wait on the results has us just doing what we have been doing for the last two weeks.  Visiting with friends, emailing/blogging, napping, and yesterday we got out and took Miki’s wheelchair for a trial run.  Physical therapy wanted her to have one for being out and about, where walking would not be the best option, although she is very capable of doing just that.  It saved her energy and she was able to do errands for a couple of hours before crashing.  And I found out there is a learning curve for being the “motor” behind the wheelchair.  We hit Home Depot and we were able to get out of there without bringing down a single display.  I figured if we did I needed a backup plan.  The plan was to leave Miki sitting in the chair while I walked away, looking as if I didn’t know what that loud sound was coming from the next aisle over.  Genius, right?  Don’t ever underestimate a good backup plan.

The last attempt at passing the time was playing a little Cribbage last night.  I figured with her mind being a little foggy from the meds, I might stand a chance of winning (even though that has nothing to do with it).  That girl had winning cards from the get-go.  Double runs of 4, double runs of 5, pegging like crazy.  I did not get skunked, but it came pretty darn close.  I was glad for her to finish me off so we could go to bed.  Should have taken her get a Powerball ticket first!

At the beginning, I thought about saying “no news is good news,” but that really doesn’t fit here.  Having had this week at home, it was like time off for good behavior.  We kind of had a “normal” week, but that is not really normal right now.  And as each day has passed, I seem to be feeling the ominousness or gravity of meeting with the doctor when we will get the results of the biopsy from Miki’s left lung.  In Miki’s mind, she’s already on the road to recovery, but…. 

Oops, I almost went into the “what ifs.”  Not going there.  At least consciously. 

Hopefully the wait will be over at the beginning of next week.  We will find the culprit of Miki’s mystery and decide how to get after it.  If I hadn’t been busy taking care of Miki this week, it would have been a much longer week and the “what if” door could have been opened.  Miki has been putting out her daily drug tainted manifestos, so her time has not been idle.  Keep a good thought until no news becomes news.

My Zen from Home:   
Watch a sunrise.  The week Miki was in the hospital, I woke up early every morning (I know that is a stretch for some of you to believe), got my cereal, and watched the sunrise come up over the pond in the park behind our house.  There is a fountain in the middle, with bright colored sculptures of 3 kids playing in the park, sitting just above the water’s surface.  As the sun rises, the streams of water shooting upwards from the fountain and its spray become backlit, intensifying its brilliance.  And if I was really lucky, the heavy moisture hanging in the air would also take advantage of the light and give it that angelic, heavenly glow as the light streams through the tree branches in our backyard.  How can you not have good thoughts when watching a sunrise, even if your eyes aren’t quite all the way open yet!

My State of Preparedness

Four and one half days under our belt, since we left the protective custody of the hospital.  Oh what a 4 and ½ day difference can make.  As the “caregiver” in this story, when we arrived home, I began doing whatever I felt was the right thing to do for and with Miki as we settled into “Centerpoint East.”  Not quite the professional atmosphere and this caregiver thought about being the “care-take-a-wayer” a few times.  I told Miki that since she had taken care of me for the last three decades (man we are getting older) that I certainly didn’t mind taking my turn now.

I got ice packs ready and refilled the ice trays, changed the sheets on the bed (you don’t realize how big a deal that was!), did the wash for both clothes and dishes, sort of cleaned house before people dropped by, delivered meals (from the appropriate carryout restaurant as needed…it was needed a lot), and came whenever called like a good man servant.  Sounds like what she had done for me for 32 years.  The only difference I could find, was that her brain and body had some drugs prescription medications running amuck in her system, making her either equivalent to a 15 year old girl (no offense if you are a 15 year old girl, I think) or a 98 year old woman (no offense 98 year old women) who is hard of hearing and still knows how to do it better than me…whatever it is.  With that said, and before she starts hating on me, she is on some chemicals that would alter anyone’s space time continuum, including Albert’s (Einstein) and Stephen’s (Hawkings).  I hate to admit it, but I was enjoying waiting on her, hand and foot and I probably will never admit that out loud to you in person or her…our little secret. 

Pain management, seemed as though it would be manageable.  She started out with 4 medications and a couple of pooping helpers, since those pain meds seem to tell the body to “hang on” to whatever goes in her mouth (that is almost another story, but not for me).  So there is one that is taken every 8 hours and another that is every 4.  Some at morning and/or bedtime, others as needed. Two on the list, she was not given scripts for and another she could take one of or two of depending on her (me).  As she was now on her “take home” pain meds by now, it was apparent that she should not and would not have any control of these bottles of bliss and I became the head of the Pain Department.  Quite the responsibility, especially one day when I was redoing the chart on the fridge I keep track of the meds with, when I erased all the info without making a copy first.  Sounds bad, but after 14 hours and a trip to the ER, I had it all figured out again…teasing!…or am I?  Either way, she is still alive and mostly out of pain most of the time.  And an ice bag does wonders for her, kind of like what a band aide does for a second grade boy’s finger when they touch a second grade girl by accident…again…teasing.  The ice bag really did bring some speedy relief to the warm beers I would nurse while monitoring her meds…teasing again!...or am I?  We seem to have a good plan in place, as long as you don’t mind getting up 2 or 3 times in the wee morning hours of some other universe, then finding your way back to slumberland.  Now at this point, those of you with children are probably not quite on the pity wagon for me as I may show signs of weakness as a parent.  And that is my point.  Not having kids has diminished my growth of super human powers to deal with numerous nightly interruptions, taking care of another humans being’s every whim, or getting along on next to no sleep.  But I am retired, which means I have all the time in the world.  I don’t’ usually sit still long, for better or worse.  And, I happen to love and adore this drugged up, bossy, dry mouthed, extraordinarily animated, fast talking woman.  It gives me piloerection…look it up (a word of the day from Nurse Nickey, one of the many great ones Miki had).  So at this point in time, I am no pharmaceutical sevant, but I am confident I can read a prescription bottle correctly about 85% of the time!

Our (my) biggest challenge so far since she was set free from Centerpoint, has been managing time.  The girl is an insatiable e-mailer.  Enough read…enough said!  (Just teasing honey!)  Her email file sizes rival high quality digital photos.  But you know what, she loves it, it serves a purpose, and if you get tired of reading after the first 8 pages, you can always save it for a rainy day.  I hear that is what Noah did!  (Sorry for poor humor insertion…I do handle the medications and I hear they can be absorbed by the skin.)  Part of this challenge is getting her to stop doing what she has loved, seeing the people that stop by and visiting with those who call.  And for me, trying to regulate this activity is more easily argued than it is difficult to enforce.  She has seen the light (or some hallucination) after hitting the wall of exhaustion at the end of two long days of great fun and socializing.  But the realization that she needs to come first above what she feels are the needs of her friends and family has sunk in.  Together, we will see that she is our number one priority and all that will accompany that to a fast and speedy recovery from whatever it is that is messing with her.

I would not be painting the whole picture, if I did not include the fact that this, my part in this partnership on this journey, has not been all bubble gum and balloons.  As I have indicated before, those of you who have been through difficulties like this or in other aspects of your relationships, professions, or personal issues, everything is relative.  This may not end up being the huge nightmare we would like to steer clear of, in which case, I (we) have already experienced some life changing moments in the short time we have been in this medical spotlight.  I have seen Miki in ways (some good, some not so attractive) that I have not seen in the last 32 years…and there have been some good ones.  I am sure she has been surprised by some of my actions (some good, some not so attractive) as well, but we both have our eye on the end goal.  And that is a healthy, happy, joyful soul, we know as Miki.

My Zen from Home:  It is the little things in life that make a big difference.  Books have been written about these little things and little things, can be a relative thing.  Today, a little thing to you and me, was a monumental thing to Miki.  I believe she let most of her email recipients aware of this triumphant action…she pooped!  Medications can do that to a person…stop them up like a cork in a bottle.  As more of her friends had “just the thing” for it, she got closer and closer to taking care of business on her own.  I can’t help but think that the idea of coffee in some place other than a coffee cup got things moving in the right direction for her.  She was so excited when the curse was broken, she saved it for me to see.  That is something I would do to her, but never thought she would share with me.  But it is the little things in life that make a big difference, so be thankful...and sometimes the not so little…it had been 5 days!

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.