Shining Through

I’ve never been one to use the idea of a “sparkle” in someone’s eye or the “brightness” of a smile when describing someone, not that there aren’t people that exhibit such qualities.  It was off my radar cause it seemed to be in the column of advertising gimmick or Hollywood special effect, to make the leading man studlier or influence you to buy toothpaste.  But these last few days I’ve become a believer.

Almost everyday recently, I get to observe the interaction between Miki and her friends and family here at the Hospice House.  I am in the best seat in the house to witness sparkle after sparkle and miles of smiles of brightness.  For example, a friend of ours that Miki has not seen for some time, found her way to Miki’s room unannounced today.  When Miki saw Shirley’s face and it registered who this was and how long it has been since they have been close enough to touch, the word brightness seems insignificant to describe the glow on Miki’s face and the transformation was immediate.  It was emotional for both (even I could see it), sincere, and child-like, as if seeing Santa for the first time.  Even in her weakest moments, she draws the energy from somewhere to beam and to make her guest feel special.  Due to the medications that keep her in a peaceful state, they also put a low ceiling of clouds in her flight path, which keeps most of the brightness at bay through the day.  But evidently she has reserves to draw from so she can shine through.  I get excited to see it in action and I have been lucky enough to see it many times these last few days.

If Miki’s brightness doesn’t blind you, her sparkle will.  I see this exhibited when she gives a “look” to see if something she says was funny and if anyone caught it, or a reaction with her eyes to a comment someone says, that gets all her attention, they twinkle like stars.  The sparkles are more rare than the brightness, but between the two, she shines through.

I would prefer to only share these highlights of my day, but I have to remind myself that the road she is on, does end.  And unfortunately it will be sooner than later.  Miki has been relatively independent with her walker.  Getting around at home to exercise her weak leg as she treks across the kitchen floor a few times before getting winded and here at the Hospice House, to get herself to and from the bathroom, with me like a parent following their child as they learn to ride a bike, hoping to protect them from a fall.  Her strength is being diminished day by day, with what I can only assume is the result of the cancer and it’s tentacles that are on a search and destroy mission, wherever they are allowed entrance.  Those of you that know Miki, know that physical weakness was not demonstrated in her day to day activities previous to this detour.  This is a woman, that when we built our first house, carried 4x8 sheets of plywood on her back for the roof like the big boys.  If something around the house needed moving, we didn’t need to call another “guy” to come help, we did it together.  From table saws to furniture and building supplies to loaded bags of groceries, she could handle it.  But now she struggles to lift each leg off the floor, long enough to rotate her body from a wheelchair to sit on her bed.  Her little arms twitch with weakness, as they stabilize her on the toilet.  And today for the first time, she has shown difficulties holding a glass of water to her lips to get a drink.  These are the things that are tough to standby and witness.  She struggles to find the words to compose a sentence as simple as to ask for water.  You can see the frustration, as her forehead wrinkles up between her eyebrows.  It’s in there, but is being bullied by the meds or the effects of the cancer, or both.  And is forced to find a longer way around to get out, if it can.  You glass half empty folks might say that she doesn’t shine through these things, but you’d be wrong.  She never gives in or gives up.

And finally, she shone through in a moment that any parent/child would struggle to complete.  Miki’s parents were her highlight today.  Where she would have slipped back to sleep during a conversation with friends lasting more than 90 seconds, she was as attentive as she can be right now, for the duration of their stay that was as demanding as it could have possibly been.  They ended their visit as it began, embracing one another as if it might be their last.  To describe these moments as beyond touching, would still not do them justice.  Anytime a parent outlives a child, the natural order of things stops to shudder for a moment.  It’s just not the way it is supposed to be.  I witnessed embraces that hurt to end and words that will never be forgotten.  I was drawn into the emotion, as anyone that was looking on.  No more heartfelt words have ever been spoken.  It was a moment and she came shining though.

As a friend told me today, who has had too much experience with this, this is where it gets hard.  Miki’s there, but is getting harder and harder to peel back the layers that the cancer has set in place to find her.  Because of that, I value every moment I can make eye contact or complete a two-word conversation with her.  I can’t imagine a harder nor greater accomplishment for me in my lifetime.  But I too have to shine through, so she can too, as does each of you.  (My apologies for all the ü sounds in that last sentence!  Just the way it came out.)

Being With Her

Today, like the countless number of days previous to this one, was spent staring at Miki as if she were one of my favorite photographs.  From watching her sleep, triumphantly struggling to stand up to her walker with a weak leg, or cracking a smile while you think she is asleep, but is really listening to the conversation, the picture never gets old.  It is regretful that it takes a monumental moment like these last six months, for me to prioritize a “photo” in this way.  You can’t go back and recapture the image that's gone, but you can try to capture a new one as you see it to be.

Everyday continues to have its challenges for each of us.  Miki and her pain and concern for the other issues she seems to be constantly battling.  And for me, watching her go through each battle.  Again and again.  I have seen myself go from bursting into tears while driving home alone from the hospital six months ago, wondering what cars going by are seeing me, to performing my ugly cry in front of strangers and only being somewhat self conscience about it today.  Nothing more blogging therapy won’t cure and nothing I love more than to admit it in print.

As Miki’s pain increases in frequency, so do the meds to “help” with it.  The more meds the more unconscious time, the more the bowels retain their slow motion status, the more possibility for pain and the dog continues to chase its tail.  The opportunity for pain grows as the cancer spreads and the toll it takes on her insides, manifesting itself in winces of pain on the outside, which is a signal for more pain control…a vicious cycle to break.

I’ve noticed that I am asking myself more frequently, if the short conversation I just had with Miki, between her “sleeping,” may be the last one, as I try to relive each word we shared.  At some point I will have my last words with her, but will I know it concerns me.  Remember…there are no redos.

At different points along this journey, talking about the worst outcome was talked about openly between us.  For those of you that got to that level of conversation with Miki, of beliefs and what happens after leaving this place, know that she is not afraid of where the road ends here and picks up elsewhere.  She’s referred to it as her next big adventure.  But with all adventures, she does admit a bit of nervous anticipation.  I can only relate to that with the feeling I had right before jumping out of a perfectly good airplane with a parachute, a long time ago.  Her big concern are those she is leaving behind, just as those that are being left behind are concerned with her leaving us.

Getting familiar with the signs that the end of life is near is not what I thought I would be doing the week of her fifty-sixth birthday, but if it helps me understand what she cannot, then I’ll be all over it.  The hospice handbook includes a list of signs that may be observed during the end of life, but I didn’t see any from my list.  They include the increasing size of each tear that begins to stream down my face, the tightness of my hand around hers, and the wrenching sadness that will fill my heart.  After I exhibit the signs from my list, my hope is that I will be able to celebrate her freedom from her pain and suffering, which is on hers, and let her adventure begin.  Until she chooses to go, she is ours to support with all we are and all we have.  Good or bad, happy or sad, I love being with her.

Another Change in Course

If things were to stay the same too long or consistent during this journey, you long time readers might think you had accidentally hit a Favorites button on your browser that took you to Boringbloggin’ rather than Walliebloggin’.  So to bring you up to speed, the homecoming didn’t last as long as you may have expected.

Every person we have met associated through Kansas City Hospice has been above and beyond what I had expected.  After some preliminary meetings and paper signings, Miki’s care was underway.  It began at the house with our hospice nurse, Kathy.  Our first 24 hours, I was to monitor Miki and her pain and nausea and administer some medication as needed to help our nurse determine a path for her comfort at home, since she could not be there all the time with us.  Would I  be able to provide the care she needed?

The next day, I gave my observations and record keeping to Kathy, who interpreted it as only a veteran hospice nurse could.  She added that information to her previous and current observations and felt strongly that Miki would be better served at the KC Hospice House.  I would have a significant portion of caregiver responsibility taken from my shoulders and Miki would receive excellent round the clock care in an environment that is perfectly matched for the situation we find ourselves in.  In turn I would get to be full time husband, friend, and chief Kleenex consumer.

Kathy laid out the reasons to Miki as to why this would be a good move that would remove her from her home and to level out her pain from the previous roller coaster-like ride she was on.  Constipation was still a serious concern and before Wednesday was over  , Miki was transported by ambulance to Hospice House and yet another correction to her course was taken to help facilitate Miki's wishes, to be free of pain and the body that was being inflicted by it.

That brings you to her current location.  Not back to Centerpoint, not another doctors office visit, and not at home.  At this point I am hoping the phrase, home is where the heart is, lives up to the words within it.  

Forty-seven postings ago, I told you that this portion of my blogging would not be from the road, but from my perspective as we headed into our detour through the land of cancer and I hope I made it primarily that.  To be true to that intent, the following are some thoughts on recent days.

Up to this last visit to the hospital, I had my sights set down the road where a basket with all our eggs was waiting called MD Anderson.  I had been looking ahead, weeks at a time.  Since then, it has become a day at a time.  And I anticipate that to be pared down to hours and minutes and I hate that thought.

A few friends and family have noticed I've lost some weight, but since we haven't owned a scale for a really long time, I couldn't tell you, but my pants are a little more loose.  I never miss breakfast, but I can easily sweep through the day and realize I was eating dinner at bedtime.  It doesn't happen very often, but can.  That diet can be attributed to Miki Gazing.  It has taken the place of watching TV and an over abundance of computer time.  A phenomenon known to happen when sitting next to Miki, as she has progressed to this point on this journey.  Step one consists of watching each breath she takes as it raises and lowers her chest, then repeats.  Step two consists of tracing each small wrinkle on her face back to a smile, a story, or just a moment we shared.  Wishful thinking that they all belonged to me, but you probably have claim to a few.  And finally, the search for the elusive open eyes.  If her bright, clear eyes are the prey, then I am the predator, lying in wait to catch them when they appear.  It's worth the effort, every time.  Do that and you won't think about eating.  Don't worry though, what I have lost can be considered what I started gaining when I turned 30 and Miki told me I was starting to "spread out."

These last few run a little deeper.  Ever since she has either lost the appetite to eat or has issues trying to eat, it is hard to enjoy a meal or a bite of one, knowing she cannot.  Even away and out of sight from her, its on my mind and doesn't seem right.  Now before you go all psychobabble on me, it doesn't keep me from eating and Denial is just the name of a little river in Egypt!

One last thought about the what-ifs.  Miki straightened me out early, on this leg of our journey, that every decision we made along the way to the present was perfect.  Like Monday morning quarterbacking, you can't undo the game for a different outcome, so why waste your energy on it, when you can put it toward making a difference that counts somewhere else.  Like most thoughtful people, we considered what we had at the time and drew our decisions from that.  Each of us brings a different set of tools we accumulate to and through our journey.  We did the best we could with what we had.  If only we had a crystal ball among our tools.

Miki is not done here, but how the next steps unfold is anyone's guess.  Her breaths have become a little more purposeful.  Her physical strength is waning.  So it is important Miki is surrounded and held up by our love for her and that is as good as it gets.  Our support is overwhelming and continues to be abundantly appreciated.

P.S.  The cards (including birthday cards!), emails, and other forms of communication continue to overwhelm both of us.  When I show Miki a stack of cards that came in the mail, all for her, she beams.  We find the time between visitors when I sit down by her side and read each one to her and the name(s) at the bottom.  Friends, acquaintances, former students, family, it makes no difference.  She takes a moment to love each one.

My Zen from Home:  The power of volunteers.  Here at Hospice House, volunteers provide a number of meals for the families who are being supported by Hospice House.  They are not just meals though.  They are an extension of their appreciation for what Hospice House has done for them and their loved ones.  A nice surprise for those of us that support our loved ones that need it.  As I walk through the line of food prepared with thanks, I feel a hug from those who have walked before me and know a version of Miki's story.

Miki modeling a birthday gift from a friend.

A Home Coming

I obviously am getting some kind of therapy by writing here, plus it’s free, but it hasn’t seemed to make this particular piece of our pie go down any easier.  Each step we’ve taken these last 6 months has been one of blind trust, trial and error, and deepening the relationship we’ve created together.  From insurance to pain meds and Cribbage to emotional upheavals that come from nowhere, I would do it all again in a heartbeat, as long as it was her heartbeat.

I have had an inordinate amount of quiet time in hospital rooms and at home as part of this leg of our journey since retirement.  I’ve had to practice patience and selflessness and I hate to practice anything, except maybe golf.  But I can spend and entire day sitting next to Miki, holding her hand as she sleeps, studying her face, and the next thing I know, the day is gone.

As the hospice visitors told her today, “You will not be going back to the hospital again.”  With a few exceptions, this was the last Centerpoint Medical Center would see of my Miki.  So like the first day of school, I took her picture with Bobby her nurse, as we loaded up and headed home.

Yes, Bobby looks like he is twelve, but assured
us he is no Doogie Howser

Of course there is a sense of security being in a hospital, surrounded by technology, knowledge, and compassion from most watching over you.  That intravenous medication kicks in a lot faster than the pill form we have at home and even though I’ve seen it done a lot, Miki doesn’t trust me with bags of fluid, pumps, and needles yet.  So as the miles pile up between us and them, as we drove home today, there was a significant shift in the weight on our shoulders to be vigilant and confident, more so on this trip home than previous ones.  We’re entering unknown territory for us.  Previously, the goal was to become whole again and relief from all that was a burden to Miki.  And as I am writing, it dawns on me that we still have the same goal.  The difference is…well…I think you already know.

Upon arriving home and pulling into the driveway, I was sensing a little something different than previous return trips from The Point.  As we approached the front door with her in her wheelchair, Miki began to tear up.  Showing emotion since her decision has been infrequent, whereas the frequency in which I have become an opened fire hydrant without warning, has become alarming to me.  She said she loves her front door.  And in turn revealed she loves her house.  As unfinished as it is, it evokes emotion that I have not been able to.

You would think six days out of our routine would not be that hard to fall back into, but it was different coming home this time.  Hospice had delivered Miki’s “hospital” bed and oxygen before we got home and our sister-in-law, Barb, was already out buying new sheets for it after waiting a significant time to receive the bed for us and watch over it’s installation in the living room.  There were many new cards to read to Miki that arrived in the mail since she’s been gone, well wishes in the form of “care packages,” and two dogs that weren’t sure who these two were, taking over things again.  I guess there really wasn’t a routine, since that indicates the same thing happening over and over again.  Everyday has been different and as Miki’s says, “It’s all perfect.”

Miki’s new “bedroom” is evolving.  Of course it has to align with Feng Shui (gesundheit!) and, well…it’s a process.  Part of which took a chunk of the evening, but it’s all good.  Chairs for visitors, conversation areas…the queen will apparently be holding court.  Speaking of which, if you would like to visit her majesty in the coming days, I’d like to request and bring a few things to your attention.  Please call or text before dropping by.  In order to make your time meaningful and to make sure she gets rest, you will need to be flexible.  I will be trying to coordinate 5-10 minute visits, which is about her limit before wearing out.  Family will be a priority, along with our friends from hospice.  And don’t be surprised, if there is heavy traffic that a timer goes off to make sure Miki gets her down time and you make room for the next person to park on the street.  I’ve always wanted to be a “bouncer.”  And don’t be surprised if I meet you at the door and tell you she’s already run out of gas.  She wants to see you as much or more than you want to see her.  Just remember this is the culmination of a difficult 6 month journey.  As her bouncer, don’t make me bounce you!  You’ve not let us down yet.

We have no clue how long or short Miki’s run will last, so this blog will act as a guidepost, where I will share with you what I know from my observations and the guidance our hospice friends will give as they hold our hands as we go.

My Zen from Home:  Most of us have heard of hospice and the good work these people do and some of us have had first hand experience with the people that make this transition as graceful as it can be.  I was not raised a real huggy kind of guy (surprise, right?), but this journey has chiseled away at that to some extent and after meeting two of the hospice nurses today, I took another leap to open my arms more frequently.  Having not met either one of these people before and having spent a minimal amount of time with them, I was hugging them as they left the house today, they left that kind of impression.  They are taking a painfully insurmountable situation and making it as dignified and respectful as it can possibly be.  How can you not hug them?  And in turn, those people around you that make your life better, how can you not hug them too?

Miki's sister and brother-in-law stop in for a visit with new festive
Thanksgiving headwear.  Anyone see a turkey?

There's the turkey!

And another one!

Time

This coming Thanksgiving day, Miki will turn 56 years old young?  Either way, it’s a fair amount of time.  When I was a kid, it sounded old.  Now that I am in that ballpark…not so much.  I have always liked the birthday card that said, “60 isn’t old, if you were a tree!”  But it’s all relative.  How much time do you need to be alone?  How long would you feel bad if you stepped on an ant?  No matter the amount of time you have to love someone, it probably would never seem to be enough.  Time goes on.

The time that has passed since this journey began grew exponentially longer as each month has passed.  And these last few weeks as we set our sights on MD Anderson have seemed extremely slow.  Not so bad for most folks, but for someone in pain, it must be an eternity.  Miki’s painful days are numbered.

The fluid that was drained from around Miki’s heart on Thursday was already being replenished on Friday, compliments of her cancer.  The cancer was doing what the cancer wanted and this was one more thing.  One more “pain.”  Because of this, yesterday we met a surgeon that was going to help Miki’s “broken heart” drain.  But first he wanted to get to know his patient and he sat down to listen to her story.  That’s right, a doctor sat down and listened.  For whatever reason, he put out front and center, the gravity of her condition, and we were schooled about how serious and advanced to a doctor, Miki’s lung cancer had become.

We’ve picked up on bits and pieces from a variety of doctors, what was taking place inside her abdomen, but none flat out said this will most likely take your life, and it could be soon.  No one knows for sure, but…  Lung cancer evidently is one cancer that has not progressed as much in its treatments as other cancers.  Not that good things can’t happen for lung cancer patients, but for most, it’s evidently not likely.  Looking back as it has progressed, Miki had been getting tired of being sick and tired and in pain for some time.

Last evening (Friday), Miki and I had the discussion that we both had hoped to never have, if that time came when it appeared as though the cancer was winning.  When to say when.  For Miki, the joy of life, as she lived it, has been slipping away, even though she has focused on the positive.  Those of you that know Miki, know that life without joy is not much of one.  And she is saying when.

We are in the process of getting her back home and to her tree house where she wants to be and getting involved with Kansas City Hospice.  Like the surgeon told us, “I can’t tell you if you will be here in 5 days, 5 weeks, or 5 months…no one can.”  But the goal is to bring as much joy back into Miki’s life as it will hold.

I wish I could have called each one of you that knows Miki and has followed this journey, to tell you personally of this shift, because you are the ones that have kept her going with your well wishes in the many forms that have reached her.  She has been and continues to be overwhelmed by your love, support, and mojo you send everyday.  So keep it up!  She will need it in the days ahead.  I will continue to convey this journey from here in hopes it will satisfy your need to know.  In turn, give us time, space, and continued support.

Do I like what is happening…no.  Do I respect what is happening…yes.  Will I think of my best friend, companion, and love of my life everyday for the rest of mine…without question.

My Zen from Home:  Miki.

Doctorspeak With a Touch of Humility

How would you like to start your day with a pericardiocentesis?  That’s right, I just used pericardiocentesis in a sentence (!) and it is driving my spellcheck crazy, which makes me smarter than my spellcheck…booyah!  But enough about me.  A pericardiocentesis (not to be confused with a thoracentesis, although Miki has now had both) is where they, they being the doctors, not like family or friends, use a needle like tool to drain the excess liquid from around the heart, which now begs the question, “What’s a thoracentesis?”  That you will have to educate yourself on, because I am not an enabler.  And given the average Walliebloggernaut that reads this mess on a semi-regular basis, you should have no trouble self-educating, if you know how to Google it.  That’s what I did.  So go centesis something…well, maybe not.

The whole fluid around the heart issue was raised around a month ago when we saw a cardiologist about her rapid heart rate.  After an echocardiogram, it was discovered that Miki did have a little more than normal amount of liquid around the heart, which we all have some of, but it should be monitored in case it increases.  Fast-forward to sleepover number 6 at Centerpoint Medical Center and it was found that indeed the amount of liquid around her little heart has increased.  Chances are it is motivated by the cancer, but the liquid was not at a critical level yet and most likely would continue to increase, putting more pressure on the heart and at some point become critical.  So, do you deal with it now or monitor it and deal with it later?  We opted for the drain now and it turns out, it was a good decision.  They (again, not your friends, but doctors) removed 725 cc of fluid, or about 24 oz (an extra large beer or two regular beer bottles worth).  More than they anticipated.  As it is turning out, this visit to The Point seems to be a good tune-up for Miki, as our goal is still to visit Houston ASAP.

The elephant in the room now is the pain that brought her here in the first place.  Hopefully that will be front and center tomorrow, since it seems to have taken an invisible backseat so far.  To be continued.

Now to the focus of this journey…Miki.  We’ve all been sick and in bed for days at a time at some point in our lives.  I think of my own and then I try to imagine what Miki is enduring and has endured since this whole thing started playing out, six months ago (half a year!).  Faking it to miss school for a couple of days and I was begging to go back.  In past hospital visits, there has not been the constant uncomfortableness that she has experienced this time.  Combine that with serious pain medication and she walks a fine line between imaginary scenarios when she closes her eyes and the reality of what is happening to her health when they are open.  She is doing the best she can, but even her best efforts can have their low points.  I have a hard time understanding or “seeing” what is playing out in front of her closed eyes, but I bet I’ve had some past students that could act as interpreters for me.  Is it a coping reaction to the crap she is dealing with, a reaction to the meds she has been on for so long, or something yet to be revealed that I don’t want to know?  Bless her little rapid-fire heart.  She can appear to be almost child-like at times, but I am rooting for the old Miki I knew 7 months ago.

Barring any surprises, we should find our ticket out of here in a few days.  Now I won’t dwell on the fact that I may have just jinxed it, but you gotta have hope.

My Zen from Home:  I witnessed a pretty cool act of humility today.  A patient that was beside themselves last night, due to a strong narcotic influence, made their night nurse earn her combat pay, as she dealt with the patient’s imaginary emergency.  It eventually resolved itself and things settled down.  The night shift nurse later clocked out and went home knowing she did the best she could, given the situation.  Was it the only way?  Who knows.  The day passed and the nurse returned for her night shift.  She also returned to care for the same patient that was a struggle the night before.  With the passing of time and the narcotics exiting the patient’s system, the two met again during shift change.  The patient, while being attended to by the nurse that was so hated the night before, for looking out for her patient’s best interests, in a small child-like voice, apologized for their behavior from the night before.  The voice belonged to Miki.  And my worries of her mental state that have been generated lately, melted away.  It is hard to not jump to conclusions and if you feel the need to, don’t jump too far.

A Moment in Time

Among the highs and lows contained within everyday of this journey, once in a while a high comes along that can really take me away.  It gives me cause to be stronger and more patient, more forceful and quiet.  Seeing Miki hug the ground with her fingers while laying on her blanket in the back yard, watching her climb the ladder to her tree house, and the grin on her face that reveals itself at the top are a few examples. 

Today, while helping her up from her hospital bed, I was blindsided by another.  A flashback to May 29, 1982.  When she gets up from her bed to use the bathroom, she rolls onto her side first before sitting up and then she takes my hands and slowly but surely pulls herself to her feet.  She stands there for a minute to get her bearings and adjusts to her weight on both feet.  At that moment this morning, we were facing one another inches apart, holding hands, and I flashed to our wedding vows 31 and a half years ago.  For a moment, I was there all over again, looking into her eyes as she looked into mine.  She may have had a different experience than I did this morning, due to the pain meds that can place her on a different planet, but for me…those few seconds, I will not forget.  When her system clears out, I will share this with her in hopes of bringing a smile to the face that makes me smile.

Today was a busy day for Miki.  She was taken to get pictures taken in the many forms they come in for the doctors to see what is going on inside her.  Unwanted fluid was removed from her lung and multiple doctors dropped in to visit about their specialty, share what they knew, or gave options of things to do.  She is one tired girl.  Tomorrow she is having excess fluid drained from around her heart, since there has been an increase there as well.  All this and its not even what she came in for.  It’s like a spider web…everything is connected to everything else.  You can’t touch one fiber without it being felt elsewhere on the web.  Our hope is to get her patched up and delivered to MD Anderson, where a match made in heaven is being worked on as you read, between Miki and a doctor that will turn things around.  She is deserving and ready.

Okay, two postings in one day for me is unheard of and the dogs tummies are most likely growling (pun intended)…time to head home, feed the pups, and re-energize for another day. 

My Zen from Home:  What’s in a hug?  Some physical contact, some sentiment or feeling of some kind, and some time.  I’ll bet most hugs are lacking one or more of those three ingredients.  Hug someone and feel what is behind it while you do.  Like the visitors that visit the Grand Canyon, the majority of tourists just look over the edge.  Be the one that goes over the edge.  Wait, that didn’t sound right.  Be the one that goes into the canyon and is surrounded by it, rather than one that just looks into it.  Go hug a canyon!

Texas Will Have to Wait

As you know by now...there's never a dull moment in this journey.

First things first…the tree house is officially a dream come true in the eyes of the city of Blue Springs.   Second time was a charm and my slight overlook of a few nails, in what they consider critical places, have been hammered into place and with any luck at all when the wind blows, it will stay standing.  It’s had a good test here this last week, so we are looking good.  No immediate threat of a tree house landing on the wicked witch of the east in the immediate future.

The final piece was the gate at the top of the ladder...check.

Now for the important stuff.  As we were preparing for the trip south to Texas these last few days, a pain that has been gradually building involving Miki’s stomach, became such that she was not able to swallow anything without it hurting as it approached her stomach.  With a short time before heading south and wanting to get some relief, we met with our primary care doc.  She ordered an ultrasound and x-ray to make sure something wasn’t obvious that was the problem.  After getting those two accomplished, they (whoever they are) added a C/T scan.  That got my attention. 

At the end of a long day, our doc called and told us that there might be a possible obstruction or blockage, but nothing for sure.  She added there were a few more spots where the cancer had spread that we were unfamiliar with and suggested that we not head to MD, but to Centerpoint and check her into the hospital to get this resolved.  She did not want us traveling and it become an acute situation with no help around.  Made sense to me, but Miki was focused on her appt. Friday at MD.  After making some phone calls and talking to a number of people, we headed to the ER to check in.  Our primary care was a strong supporter of our trip to Texas, so when she said we should not go, I felt that was momentum enough to shift our focus.  With Miki’s attitude, that everything is perfect, she adjusted to the new direction even though I could tell she was knocked down a few pegs.

After about 5 or so hours in the ER, she was assigned a room on the second floor (a new one for us) and she got settled in for the night or should I say morning (1am).  It was hard to leave the ER and the calls coming in over the intercom about another ambulance arriving and the family next door where the kids were running rampant and the mom yelling at them and the doctor and possible other imaginary people in the room that were irritating her.  I am sure there were no illegal substances involved with her situation.

This morning Miki was wheeled down to radiology for further investigation shortly after I arrived, so we hope to hear what they are thinking and wanting to do this morning.  Not sure what specialty this floor is yet, but I hear a lot of hacking in the distance, so we will keep the door shut as much as possible.

We continue to love the good mojo we are sent by you, so keep it coming.

My Zen from Home:  Take a timeout as needed...it's a long game we're in.

On.

Off.

Get In, Sit Down, Shut Up & Hang On!

What does the infamous bumper sticker and title of this posting have in common with us?  Kinda describes our last 48 hours.

The last posting had us readying ourselves for a promising visit to KU Med. Center.  We were to meet with their lung specialist and then a genie would appear and grant us three wishes.  Well, we found the satellite office only after the GPS on my phone took us 20 minutes the wrong way, to the wrong destination…it was only off by 10,000 (according to the address numbers).  I felt a little less of a fool when the nurse said we were not the first to claim that excuse for being late.  We did meet with a very nice oncologist, but recognized within a few minutes that he, like out previous oncologist, were reading from the same script.  With no new signs of hope, we left feeling like we needed to be getting Miki some kind of treatment, even if it wasn’t all that promising.

Fast forward a few hours.  We heard from friends who have been staunch supporters of ours and have had their own run-in with this crap called cancer.  They came into the picture a while back, about the time we were feeling a little like a ship drifting at sea.  Their energy got our mojo back on track and for that we are deeply grateful.  We contacted them to let them know of the outcome from our meeting with KU.  Once again, they felt strongly that we pursue MD Anderson and even though we had a date already, get creative and work to get it moved up.

Our day began by making contact with one of the people we have been in touch with in Houston and letting them know that for Miki’s sake, sooner is way better than later to get what help they may offer.  She took us seriously and said she would see what she could shake from the tree and get back to us by the end of the day.

In the mean time, Miki had an MRI of her heart today at St. Luke’s at the Plaza.  The cardiologist that we saw to make sure her hummingbird heart rate was not adding to the whole puzzle, wanted to rule out that any cancer had spread to the heart.  Okay…sounds good.  We failed to get the memo that it is a two + hour event.  Long story short…Miki did well, even though she dozed a few times and we will get the report next week.

We headed home by way of Winstead’s on the Plaza for a few calories.  Miki forced down a few fries, while I had one of everything they offered.  It was about 3 pm and we had not had lunch, thinking it would be a relatively quick scan.

Upon our arrival home, we were anxious to see if the tree house passed it’s final inspection by the city codes department.  It did not.  Don’t be sad.  It was my fault and was a silly oversight on my part and has already been fixed.  So, Monday it should pass and we will officially be tree housed out.

At about 4:30, we got a call from our Texas girl who was seeing “what she could do.”  She directed me to call our initial rep to see if she had a waiting list we could get on.  I did.  They don’t.  But she said she would let us know if there was a cancellation (does that sound like a waiting list?).  No matter.  About 10 minutes later she calls back and says there was a cancellation and that there was an opening next Friday, the 22.  I said…”WE’LL TAKE IT!”  Miki’s got a few more angels in her corner.

We leave next Wednesday to see where this ray of hope takes us next.  We’ll Get In, Sit Down, Shut Up, Hang On…and say THANKS!  

My Zen from Home:  See above.

Reality Check

Following Miki’s fourth chemo treatment about 6 weeks ago, we did not realize that it would be her last at the KU Cancer Center in Lee’s Summit.  We also didn’t know that it would be followed by a couple of tries at pneumonia, spending seemingly valuable time on something other than her cancer, and the realization that the cancer in the lung had grown instead of shrunk.  I think we assumed that somehow a Plan B would come along and pick up where our oncologist left off.  Yeah…not so much.  At least with not much speed.

While in the hospital, awaiting her release, with reality presenting no clear and present direction to go, with the support of friends we applied online to get into MD Anderson in Houston.  We also started a parallel plan to visit KU Med Center and see their lung specialist in hopes of an alternative treatment to Plan A.  Tomorrow KU begins their shot, as we meet with Dr. Huang.  We also received good news bad news from MD.  We have been assigned a doctor, but our date to meet with him is not until Dec. second.  More water under the bridge.

I cannot tell you the range of emotions I run through every time I look at Miki.  When we started this journey, being naive wasn’t so bad.  It put us in a fearless state and this was just a speed bump we’d get over.  Nothing like experience.  At this point we have been knocked down a few pegs and respect the journey a bit more, but are determined to keep moving forward and find a plan that will work, be it X, Y, or Z.  Having the wind taken out of your sails when you think you are going in the right direction is a pretty good reality check.

On a related subject and the constant search for “Where’s Miki’s appetite now?   She had the hankering for some cheese popcorn.  Before I heard the “n” on the word popcorn, I was half way to the grocery store.  Among other things, I returned home with 4 bags of cheese flavored popcorn and a blind taste test ensued.  There was an all natural version from the health food section and 3 others from the “normal” food isle where chips seem to be their own food group.  Since cheese flavored popcorn doesn’t grow up with helicopter parents, there can only be one clear winner, followed by 3 losers, or at least a spectrum or scale of likeability.  In any case, the “healthy” one came in LAST!  Love it.  And she did find a favorite that was the generic “store brand.”  Love that even more. 

Let's see...stale, where's the cheddar taste, bad after taste,
and a strong argument not to pay twice as much for
organic than "normal"!

Nothing festive about this taste!

A respectable second place...O-Ke-Doke!

The clear taste winner...Go HyVee!

A roller coaster day of news.  Good news, bad news, tasty news, and tomorrow will assuredly bring more news.

My Zen from Home:  Tomorrow is another day.  As long as you have that, you have a good start.

This is a locket that a number of teacher friends from my
old school went in together to buy Miki.  It is a Living Locket.
It is meant to keep "Home" close to her wherever she goes.

Before and After

After

Before

While we wait (yes, still waiting) on a date to head to Houston, we just don’t sit around here with our heads hanging low…nooooo!  We keep busy.  In between naps, Miki folds laundry, works on stuff, opens cards/emails/texts, works on stuff, does her breathing treatment, works on stuff, naps…well you get the picture.  Me…I start the laundry, get Miki the mail that contains cards, gets her breathing treatment stuff together, and while she naps and works on stuff, I have been finishing the T-house.  Its not officially done, but other than a gate thing at the top of the ladder that I haven’t designed and built yet, IT’S DONE.  I finished the siding yesterday as the cold front blew in…just in time!  Today I finished the railing on the backside that I left off to pass materials up through and cleaned all the scrap wood up in the yard.  Sometime soon I will invite the city codes inspector over to give it the final okay (with any luck) and we will check this dream off Miki’s list of things to make Wallie go…What?

The unofficial finish marked by the railing
on the back of the T-house.

Before this journey began, I’m not sure I would have jumped all over the idea of a tree house in the backyard.  But as much as Miki enjoyed watching the progress and visiting the top a few times, I enjoyed making it happen and cracking the whip on the poor volunteers that put their back into it.  It’s drawn some attention from people walking in the park and a few have ventured for a closer look.  It has attracted some of you to the top to see what it is that Miki envisioned by sitting in the trees.  I’m not saying it is right for everyone, but it was right for us, right now.  After it becomes officially done and the permit is taken down from being displayed in plain sight (somehow that never happened…oops) there is a list of other things to take on the job of distracting me from intermittently facing the reality of this journey.  For Miki, I trust I will find her in the tree house, doing whatever tree house dwellers do.

Before "house."

After "house."

Before "house."

After "house."

Second summit.

Before this journey began, I didn’t know that much about the amusement park-like ride that cancer takes you on.  Instead of standing in line to get on the ride, you stand/sit around at doctors appointments or in E.R. rooms waiting for help.  Instead of the anticipation and adrenalin rush of the ride, you hurry up and wait with the anticipation of what is causing that pain or what kind of cancer might it be.  Instead of getting use to the thrills and chills of impending danger, you get the thrills of seeing your favorite chemo infusion nurses and the chills of getting use to side effects from drugs you never knew the names of.  Instead of hoping the ride never ends, you wish for no one to ever get on this one and that you will be able to get off sooner than later.  After this journey sees a conclusion, it will be nice to find a new normal.

Before I met Miki, who am I fooling, I don’t remember much before Miki (it was a long time ago).  After I met Miki, she enhanced the person that has jumped on board with her to see this story through.  I’ve learned some intangible things that I can’t really put into words, become envious of her strength and courage, and made steadfast the love I have for her.  Even though life can suck at times, life with Miki has gotten better and better as time goes on.  And since time doesn’t seem to slow down or stop, I can’t wait to see where we go from here.

My Zen from Home:  As we prepare to head to Houston and MD Anderdson, in search of a needle in a haystack, how do you prepare for the unknown.  Among other unknowns…how do you pack for that?  It’s almost like the ultimate spontaneous trip.  The only thing you know for sure is your destination, what happens once you arrive is a question mark.  Go with the flow becomes the new mantra and remembering to breathe, a requirement.

Bonus Pics

Working without a net!

My old "teammate" Megan, from my working
days, stops by to see the progress.

Dream complete!