All Hallow’s Eve

Halloween…a special day to remember the dead.  Kind of an Autumn Memorial Day?  Is this another one of our “special” days that we have contorted into fun, food, and foolishly spending money on?  Just checkin’.

If so, Miki did not disappoint.  She called me just as I was getting ready for my daily jaunt to The Point and requested some Halloween candy and something to put it in.  If you haven’t caught it by now, what Miki wants, Miki gets.

I headed to one of our local grocery stores to grab some candy and at the end of one of the isles where they put weird stuff, I saw some weird stuff.  I saw these little fake stuffed animal heads that went over your head like a stocking cap and down from it were hanging matching paws for that particular animal.  They looked like they would fit the head of a child pretty well, so I got Miki one.  Hers was a lion and she loved it…I did good.

Her morning was as good as I have seen her in some time.  She ate cereal I brought from home, her voice was as normal as I have heard it in a looong time, and everyone that entered the room all morning was served up a black cauldron of treats to choose from.  Snickers seemed to be the favorite.  She is low maintenance and she has candy…no wonder she is the favored one on the cardiac floor.

Late morning brought an echocardiogram to rule out some fluid around the heart as a problem, but turned out to be something to put on the “watch list” and nothing to prevent her from moving forward.  But…she hit a wall (figuratively speaking) while out of the room and the pain in her hip soared until mother morphine came to the rescue.  It took care of her pain and the rest of her day.  Evidently it conks her out as well.  Her treating the tricksters was over, but it was great while it lasted.

We’ve met some more great nurses on floor 5 after having been spoiled on 6.  But then when you practically take care of yourself, what’s not to like from a nurse’s point of view?  But wait, its not Miki that is doing all the work, It’s me!  For example, a short list of responsibilities I have taken on are, #1 - respiratory therapist’s assistant, where I hand them the breathing thingy and then turn on the air so it bubbles the medication into a mist where she inhales it for a period of time and then I turn off the air and place the device back in the bag until next time.  #2 – nurse’s assistant to the assistant or ice bag runner in a nutshell.  And then there is #3 – special assistant to the urology department’s custodian where I measure the pee output, clean out the special collection device, place it back on the toilet, and record said output on the appropriate form.  The way I see it, I’ll be administering medications and running the IV pumps before this journey is over…a medical road scholar if you will.

As I leave Miki each night, she gets a head rub followed by a bunch of kisses about the head and neck since we have been keeping our mouths to ourselves, so the infectious disease folks don’t start pointing fingers and I take a few snapshot looks as I head out the door to picture her on the way home.  I hate leaving her more than I assume the dogs love to see me come through the door in hopes of getting their rawhide chews each night.  It is a pretty close call.

My Zen from Home:  

Our Maple tree we planted a few years ago.
How can you look at that and not get Zenned?

Bonus Pics

The Lion Queen!

Our nurse, Kelsey, from the 6th floor stopped by to trick-or-treat...or was
it just to visit...I forget.

Learning the Rules of the Game

As novices to the Cancer Game, we picked up on the goal pretty early on…get rid of the cancer!  Now to do that, there seems to be a lot of rules and strategy to make you successful.  This is the part of the learning curve in which we find ourselves and it is pretty steep.  But these last few days have been very educational, because like in any game there are those that hold strategy and use of the rules very close to the vest and there are those that are willing to share what they have learned from their successes and failures to hold the next player up a little higher.  They invest their time, energy, and knowledge, to support you as you learn the game.  We found some of those people this week and some of them found us.

After unpacking the Cancer Game box back in June, we thought we knew how to play from visiting with other past and present players of the game.  We first started to learn about prescription drugs on a scale we had not experienced before.  Oh, that one is not so nice, but this one seems to help.  Yuck, lose that one and give me a higher dose of that one.  Let’s try this new one instead of that other one…yes it seems to help too, but lasts longer.  What, we can only have how many milligrams of acetaminophen a day? 

Once we were assigned our cancer, we settled into our treatment and assumed the game would be pretty straight forward from there…like Checkers for example.  We take our turn going to radiation each day, seeing progress being made.  Okay, this is a pretty simple game.  Chemo began.  We started to learn about all the possible side effects and things to avoid.  We witnessed other players miss their treatments due to not following some of the rules.  Oops, your white count is too low…see ya later.  Awww, your hemoglobin needs help…you can still play, but you need to work on it.

We've met some other players along the way, all with their own interesting reasons for playing.  Many of them beginners like us and some that have been around. And in some cases repeat players.  No discrimination in this game.

Recently the game lost its Checkers like resemblance and started taking on a different persona.  Around what we thought would be half way through our game, we were sent back to square one, like in the  game Sorry, when someone lands on you or like many other games when you draw a card that makes you miss your next turn.  Our chemo drugs of choice were not showing the results as hoped, so now we head back to our starting position and hope to roll a number to get us back in the game, moving forward toward the goal. 

We were just getting comfortable at our table and now we may need to switch it up.  We will be consulting other experts of the game soon to learn of new strategies and hopefully getting back on track towards success.  In the mean time Miki has been placed on the injured reserve list, but her come back is immanently close.  The fans following our game keep us going and we treasure your support.  Hang in there with us and we will hang in there for you.

Of course I don’t view this as a game.  The intensity seems to ratchet itself up all on its own.  There are days I don’t know how Miki keeps her head straight and days that soften the hard ones.  One of the many lessons I think I may have learned is you can’t go into this journey with any expectations, because as soon as you do, it kicks you in the butt.  Kind of like Cribbage, you either get the cards your way or you are waiting to get the cards your way.  In the meantime, you strategize and pay close attention to yourself and take cues from those you surround yourself with.  Success is there for the taking.  It is a matter of which route you take to get there.

My Zen from Home:  Be open to the possibilities.  In the last 2-3 days, friends and in some cases acquaintances have helped me and us reemphasize that we are in charge of the choices we make.  And to be open to all the options available whether you believe they are doable or not.  Not sure it is the same as “if you build it, they will come,” but if you think it possible…it can happen.

Tree House Update

Door and windows awaiting siding and trim.

Two Steps Forward, One Step Back…

The last few days since Miki got home from the hospital, where she was treated for pneumonia, were pretty good…all things considered.  She knitted, slept, watched some loaner movies, slept…you know, things you do to recoup from pneumonia.  But yesterday she was either riding high from a fresh batch of hemoglobin or just the thought of seeing her radiologist to help form a new plan for kicking cancer butt on Monday.  Either way, she used some of that energy to work her way to the shredder in the kitchen to shred some of that confidential correspondence that we all get in the mail that we don’t want to just throw away in the trash, until she jammed it.  She put away the latest shipment of dog food we got online from Mr. Chewy (I know, but they have cheap prices).  And if I remember correctly, she killed a few flies with the fly swatter too.  Sure she later collapsed from exhaustion, but that is how Miki rolls.  She was eating well and she even added Kellogg’s Frosted Flakes to the grocery list!  I haven’t had the cojones to do that for years.  But they returned with me from Hy-Vee for whenever she wants them.  One step forward.

We met with our oncologist on Thursday to form a new game plan to get after the cancer that seems to have not read the script of how this was supposed to go.  We were scheduled to meet with our beloved Dr. Keleti, the radiologist, on Monday to see how he could fit into this new picture.  And the tree house was coming along with the roof on, the windows in, and the door added today.  Two steps forward.

Then the sun rose on Sunday.  She felt somewhat lethargic, but was excited for a second ascent into the tree house to inspect the progress.  She opened the front door to visitors to check it out too.  She knew she was pushing it and by around three in the afternoon she still did not have the energy to head to the backyard, her little cheeks and nose were rosy, and she indeed had a temperature that drew her back to Centerpoint.  One step back.

We clicked into hospital mode and headed for the ER.  Again we were met with caring professionals that made everything feel doable.  We eventually got placed on the fifth floor (not our favorite sixth floor), met a nurse we had not had yet (shocker!), and settled in for an undetermined length of stay.

Passing the time in the ER while waiting for our concierge
to form our itinerary at this resort.
Is it just me or could two of Miki's heads fit in mine?

 As I have said a number of times now, Miki is the one with the attitude that keeps us moving forward.  She endures the pokes and the prods and hangs on to at least a little modesty, even though she said she lost it long ago, thanks to radiation techs and hospital gowns…it is the nature of this journey and she continues with a smile (when possible).

She doesn’t seem to wander into what-if-land like I do.  She keeps her eyes on the prize, which she knows better than anyone.  Me…my mind has gone everywhere more than once.  What brings me back is knowing Miki don’t go there!

I left Miki tonight for her fifth hospital stay.  I left with a list of things to bring back tomorrow.  And I left after kissing her on the forehead, where I have kissed her since June.  That will never be a “normal” kiss, but I’d rather my nasty germs not dirty the waters even more.  I drove the 5.5 miles home, petted Tuck and Tooga,  and had a big bowl of Kellogg’s Frosted Flakes.

My Zen from Home:  My Zen is out of the office until the next posting.  If this is an emergency, dial 911.  If you want this Zen in Spanish, press 2 now.  If your check engine light just came on, you don’t need me, you need a mechanic.  Leave your name and number and I will get back to you as soon as I can, thanks for reading!

Imagine windows where there are none, but you don't
have to imagine the metal roof!

Keep It Movin' Forward

The house is alive again with the slow rhythmic bass drum of the oxygen machine (really), the low hum of the radiant heater in the TV room (where Miki hangs out most of the time), and the two of us talking to one another when not in the same room followed by, “What did you say?” when we meet up again in the same room.  It’s like we are an old married couple, minus the old (keep your thoughts to yourself).

Even though I came home at different times during Miki’s latest 4 day visit to The Point, “coming home” to our house after a hospital stay is like coming home from a trip.  There is “unpacking” to do, stirring up the musty air of a closed up house, and settling back into routines like feeding the dogs at their “ normal” times, vacuuming the dust bunnies made of mostly dog hair, and emptying Miki’s port-a-potty as needed.  It’s a good thing.

This time it is a little different though.  In past visits to the hospital I’ve left usually feeling better about her getting the blood transfusion that will soon make her feel human again or a reduction in pain that allows her to continue to be at home while waiting for her body to reboot itself.  This time pneumonia was involved and pneumonia is never good for anyone.  But it appears she has responded well to the antibiotics.  In the meantime though a C/T or computerized tomography scan was taken of her lungs (the left one has the tumor) to see what fluid there might be, if it was collapsed, and what the tumor was up to.  Tomography is the process of creating a 2-dimensional image of a slice or section through a 3-dimensional object, kind of like looking at a whole loaf of bread, one slice at a time.  The only thing we heard at the hospital was that the tumor had grown significantly.  Miki’s general ability to breath and how she feels has not changed significantly.  But since the direction of treatment has not had the desired effect on her lung and most likely in other areas as planned, we met with our oncologist doctor today to discuss plan B.

In a previous posting I referred to pictures vs. words.  Our oncologist thought seeing some of the pictures from the scan would help explain what might take too many words.  She was right.  It took seconds to see the majority of Miki’s left lung is now inhabited by the tumor.  It was important for us to see it and not have it described to us.  There would not be enough words.  Miki’s response was along the lines of, “I feel good right now, let’s move forward.”

A new plan is being cultivated with a doctor in Ohio that specializes in this kind of tumor.  Some radiation will likely be included to speed up any areas the doctors’ feel will aid in any pain relief and will all be ASAP.

At this point in time, I’ve decided I can’t spend too much time dwelling on what has already taken place, but to support and encourage the movement forward, whatever shape it takes in the coming days.  I’ve found that if I dwell…my eyes begin to water and tears will come from what seems like nowhere, but that nowhere is not on the map and as long as it isn’t, we move forward and I don’t dwell.

Instead of dwelling, there is a tree house to finish, more Cribbage victories to claim, and a baldhead to rub.  There are smiles to create, pictures to take, and a potty to empty.  I’ll probably see more isles in Michael’s I haven’t been down, more fun showers to “help with,” and spur of the moment dashes out of the house to satisfy cravings.  As we move forward, I look forward to each one of these and more.

Ready for it's metal roof, siding, windows, door, and then of course...
Miki!

My Zen from Home:  While riding the elevator up to the sixth floor at the hospital this week, the door opened on the fifth floor to let someone off and I noticed a woman with her back to me, talking on the phone.  I thought I recognized her and quickly exited to check my suspicion.  I was right.  It was one of our beloved chemo nurses from the infusion room at the KU Cancer Center, Teresa.  After she greeted me with a hug, she told me of a serious medical issue her husband had just been admitted for.  WHAT?  Nurses don’t have such problems!  Just like teachers don’t eat food, but surprise their students when they are seen at the grocery store.  Even though she has super powers to us, she is still human and so is her husband.  Our best to them both.

A Miki Collage...or as we call it, a Mikilage!

I've never seen anyone enjoy losing as much
as Miki.  Her head almost exploded...really.

Ready to head home from The Point, sporting
a new hat her mom knitted for her.

A moment at home, back in her recliner.

Bits and Pieces

Our first visit to the KU Cancer Center in Lee’s Summit was for Miki’s second round of chemo and unknowingly it started us on a trail, following bits and pieces of stories told by others facing the same foe.  Little did we know then, but that foreshadowing would take us to places and experiences that would create Miki’s story, that at some point will most likely become part of another’s trail as they begin their journey down this son-of-a-bitch of a road.

This latest experience that landed Miki back at Centerpoint Medical Center, started with a fever that ended up as pneumonia.  We had heard bits and pieces of others that had been there and done that and the nurses that in so many words made us think that antibiotics and chemo drugs don’t play well together, so the next round could be compromised and postponed, as was Miki’s.  She would begin round 5 this Wednesday (tomorrow), preceded by a C/T scan Tuesday (today) that in our dreams would show an amazing reduction in cancer growth.  But that will have to wait.  There is evidently a collapsed lung that is trying to work its way back to reinflating itself, so a long needle does not have to come into play in this part of her story.

I must say this visit has been one of the low points of this journey, right along side of her first round of chemo in the hospital and the original search for the culprit causing her leg pain.  The good thing about low points is that there are higher ones before and after them.  Yes, Miki had a high fever that was a catalyst for my wild imagination to spread its wings for a bit last Saturday night.  Yes, it lead to a diagnosis of pneumonia, an event that no one wants to experience even without cancer about.  And yes, even with a collapsed lung, the lung experiencing difficulty already, Miki finds a way to carry on.  As long as she can do that, I can follow suit.  It’s when there is doubt behind her eyes or a lack of energy for trying that I feel us bottoming out.  The good thing is, we seem to not stay there too long.  It is more of a bounce off the bottom rather than a landing on it.

Some of that bounce came from Miki receiving a couple more bags of blood yesterday; as her hemoglobin was low again…it’s a cancer thing.  Her white blood cell count was up too, thanks to a special shot that encourages white blood cell growth…it’s a cancer thing.  And more importantly, I kicked her butt in Cribbage…TWICE!!...that’s not a cancer thing.  These bits and pieces were experiences we had only heard about from others that had been where we are now.  I think the key to getting through this is not to listen to others stories anymore!  Kidding.  We recently had a visit from a friend of ours, Ellen, who I use to teach with a looooooong time ago.  She had her own cancer story to share that occurred during a period of time we were out of touch.  While she and Miki were visiting that afternoon, I observed there interaction was different than others that had come to visit.  There was a comradery through which they were relating.  To me it appeared special; as if they were twins speaking their own language.

Doesn't she look GOOD after a good old
Cribbage butt-kickin'?

I don’t know what is behind Miki’s eyes some days or how hard it must be to call upon energy that just isn’t there, but I do know what bits and pieces she is storing up to share with others someday will make their road a little less of a S.O.B.

My Zen from Home:  Something fascinating happens when Miki is at this hospital.  Within the time constraints of a nurses shift of 12 hours and sometimes within minutes, Miki will know more about her nurse or respiratory therapist, or cleaning lady, than they would offer up after free drinks on a Friday night out.  Those of you that know Miki, understand this.  She was taken down for a C/T scan this afternoon, by a complete stranger and when they returned Miki was learning intimate details of why her baby’s life was cut short.  They were crying together, talking as if they had history, and hugged before parting.  How does that happen?  I don’t know, but I can imagine it is the same thing that is going to see her through this mess and out the other side.  One way or another, she is a force to be reckoned with…collapsed lung or not.

Another First

Its not enough to occasionally be intolerant to food, or be fatigued to limp rag status, or even get me to go shopping up and down the isles at Michaels for what seems an eternity…but to throw in a fever over the acceptable level of 100.4 and make an unexpected trip to the emergency room…on a weekend…during a full moon…what…that’s grounds for something.  I don’t know what, but it must be something.  Our chemo nurses always emphasized the seriousness of a temperature of 100.5 or higher…you head for the E.R.  Well, Miki has flirted with it before, but she can usually tell if her temp starts heading upward.  We check it with all three of our thermometers, yes three, since they all don’t agree (we call them congressional thermometers!).  We’ll find the average, do some algorithms with it, transverse the hypotenuse, square it a few times, and throw a little Pi on it.  By then her temperature is down and we go on with Miki life.  She will pop a few Tylenol and that will normally nip it in the bud (idiom alert…if you are keeping track of my wreckless use of them).  This time the fever had some momentum with it.

Saturday evening.  We’re watching Mission Impossible…again… and she asks me to take her temperature.  I round up the three thermometers and one at a time wait for the beep to read the results.  First one…101.7F (remember 100.5 is a red flag)…”Oh Shit Bubba,” I think was what I said.  I am sure I must have had the look in my eyes that an expecting father would have when the expecting mother’s water breaks.  Second thermometer read 101.3F.  I am assuming my pulse increased, along with my blood pressure, and it’s been normal since I retired.  The third one, the most expensive one of the three, read 99F.  It has proven to usually read 2 degrees low…yeah…the expensive one, thank you very much! The one thing they agreed on was it was too high.

At this point my mind is already collecting all the paraphernalia that we have come to learn to take with us to any hospital visit.  I am throwing prescription med bottles and Fun Size Snickers into my backpack, along with her little comfort pillow she received from one of the volunteers on her first hospital visit and my laptop.  I slip her wallet with I.D. and insurance card into my back pocket, even though we’re in their system as a Platinum Member in their Frequent Flyer Patient Miles Program (not really) and I head to the car without her…just like an expectant father without his wife.  I actually do remember to take her with me, as we say goodbye to the dogs who are asleep upstairs.

It is about 8:30 Saturday evening when I wheel Miki by what appears to be a homeless person, sitting on the ground next to the entrance to the emergency room.  I continue in passed the double doors to her second in line position, as we begin the waiting game.  We are lucky.  With only one other emergency in front of us, we felt pretty lucky on this full-ish moon night.  We soon find ourselves being lead to a room where our nurse begins the litany of questions and procedures before care can be given.  By 10 or so, the nurse has a urine sample, drawn blood for an assortment of tests, and Miki has had a chest x-ray.  Our doctor makes his appearance and talks possible pneumonia, antibiotics, and getting a room upstairs.  The thought of antibiotics raises our eyebrows (yep Miki still has hers!) because of some warning about them and their effects with the chemo drugs…or something like that.  The ER doc calls our oncologist and a while later in walks some antibiotics with a room upstairs being prepared for our 4^th stay at The Point.

A new day begins as Miki sleeps through the midnight hour and we wait for our transporter and some explanations as to what is going on in Miki’s adventurous little body.  At 1am we started settling into room 624 to complete the Centerpoint Grandslam.  Miki has now officially stayed in each of the four wings (hallways) of the hospital, in the same calendar year.  Who woulda thunk it?

It is now a little after 2am, I am home for a few hours of sleep, or would this be considered a nap?  I left Miki in the capable hands of nurse Niki and her assistant Vicky.  The ER doc said she could be in from 24 to 48 hours and we are hoping that it is no longer than that, so she can stay on schedule to get her C/T scan on Tuesday and her 5^th round of chemo starting on Wednesday.  It sounds odd, wishing for the next round of chemo, but another one down means another one closer to the last one down.  Never a dull moment round here, huh?  If it is not a transfusion, it’s a tree house.  If its not diarrhea, its gonorrhea (no, I just made that up cause it sounded similar, she hasn’t had diarrhea for a long time!).  The fact is, I am lucky she is all mine, but I’ll continue to share.

My Zen from Home:  We are down to the roofing, siding, and installation of the door and windows for the tree house.  The bones of it are in place and have already attracted a number of you to visit at altitude.  Miki gets excited each time a progress report comes her way via me, a daring visitor, or a few photos.  From dream to fruition in a relatively short time, but its roots evidently go back a ways.  What I have learned this summer is for you dreamers not to keep your dreams to yourself.  If you put them out there, the dream-makers may find you sooner than later.  

Kelly and Derek make a surprise (to us) visit from San
Antone, Texas.  Here Kelly and I prepare to bungee jump
from the tree house as Derek sets to record it for social
media.

Pictures and Words

If a picture is worth a thousand words, then are a few words worth thousands of pictures?  Since I live with Miki and get to see her on a daily basis, the snapshots I take of her in my mind each day serves as a source for some of the thousands of words that I feel have come through this blog.  For most of the rest of you, you only have our blogs to give you a peek into what’s going on with us and in particular, with her.  And if you go by her blog, lately it has dwindled down to fewer and fewer words because that is all that she has to offer up right now.  The same Miki, that on steroids way back when, could out peck a woodpecker, can now almost fight her way out of a wet paper bag.  This week or so before her next round of chemo begins, is tough.  It’s tough for her to go through and it is tough to watch her go through it.  But that may give you some perspective on her less that Miki-like postings lately, which I am sure many of you had already figured out.

As much as I think we have identified patterns from the time during and after each chemo round, it’s just not that cookie cutter-able (chalk up another new word for me!).  Any possible patterns seem to have a variation on the theme and that keeps us on our toes.  It seems as though there have been more good times during the good times after chemo and the bad times seem to be more manageable, spoken from the one not actually experiencing anything first hand mind you.  The bad times I am referring to, are acknowledged and dealt with more rapidly, thanks to a steep initial learning curve.  The good times are when she has energy and the gumption to get out and go for short periods.  In other words…SHOPPING.  She loves to get out of the house when she can.  And if that means we are going to Kohls, or Michaels, or Charming Charlies one more blessed time, then I slap a smile on my face and get her loaded in the wheel chair, cause we are going SHOPPING!

In the same vein as pictures and words from the first paragraph, I have something to share…

It’s not what you think, I don’t think.  You know the stories on the news where some construction worker ends up with a piece of rebar through his skull and lives to tell about it to a reporter in the back of the ambulance on the way to the emergency room.  Well, the tree house has afforded me the same opportunity for story telling.  Except the skull in my story is my middle finger and my rebar is a nail from my nail gun.  And the reporter is my conscience trying to decide if I should tell Miki of my construction prowess.  The nail in the photo above is the actual nail in my story and the two puncture wounds on my middle finger are the badges of stupidity I’ll be wearing for some time, if not for(frickin)ever.

It all started innocently enough, as I was getting ready to nail a stud into place.  The little job foreman in the back of my head told me to move my fingers back from where they were holding said boards and I did, because I have started listening to the voices in my head more frequently, with positive outcomes.  This is where chaos ensued.  I pulled the trigger to set the nail and as sometimes happens, the gun bounces and in the process the trigger shoots off another nail.  I still don’t know how the nail became part of my body, but I do know it could have been a lot worse.  Like it could have gone deeper and through the bone or ricocheted off the decking and pinned me to the oak tree, where the squirrels would be waiting to laugh at me.  As it turned out, I looked down at my finger as it didn’t feel right (duh!).  After what seemed like minutes, but must have been a couple of seconds, I made the executive decision to pull it out from it’s perfectly centered position just below the skin, rather than take a picture of it and post it on Facebook or Tweet about it right away.  I applied pressure and then tried to decide if I should bother Miki about this little owie or let her sleep.  I let her sleep.  Since it was a flesh wound and I had a tetanus shot last May, I put some Neosporin on it, a band aide, and went back to framing up my wall.  You would be amazed at everything you need your middle finger for besides flying the bird.

So with my story you not only got a picture, but also what must have seemed like a thousand words.  With Miki, she doesn’t have to say a lot to let me know how she is doing.  Her face, the position of her body is my picture and it speaks volumes.  Imagine that you are almost confined to whatever comfortable position you can find (is that an oxymoron or is it just me?), the comfortable part does not last for long.  You depend on someone else for the majority of your needs, unless you want to get winded while fending for yourself.  You are asleep more than you are awake each day.  You primarily potty in a bucket and whatever goes in your mouth to sustain you is forced more than gladly received.  Your body is borderline emaciated, but you are consciously trying to reverse the process by which you got this way.  Every three weeks you voluntarily let drugs into your body that knowingly cause perfectly good cells to die.  And you occasionally smile and laugh.  How is that for a picture?  My story doesn’t seem like such a big deal.

My Zen from Home:  The tide is changing.  How do you know when the tide is changing?  I am thinking Miki’s tide is changing because there seems to be more better days than other ones.  Her energy level is sustained for longer periods of time.  And I can think what I want!  How do you gauge change in you?

Dark Clouds and Silver Linings

Miki is rapidly approaching round #5 of her original 6-8 rounds of chemo.  We have this week to tread water and then it is back to the infusion room by way of a C/T scan next Tuesday, Oct. 22.  It is this last week to week and a half, that can draw in the dark clouds of side effects, like fever spikes, a big lack of energy, and just not feeling right in her gut.  But with these varying distractions looming overhead, she always manages to pull a few silver linings out of her hoodie.

One event that was on the calendar for some time, was a visit from a couple of North Carolina buddies.  Bunny and Janet were our tandem whitewater canoe, paddling instructors…turned great friends over the last 10 or so years.  They were to make a road trip here to visit Miki and me this last weekend, but due to Miki’s plummeting energy level, we had to cancel on them.  We had the goal of getting the decking and railing on the tree house, so we could sit up in the trees, share a little wine, talk a little Colorado River trip prep, and generally catch up.  Miki spent time with them while I was in Canada right before all this poop hit the fan last May.  A good time would have been had by all, it’s just that Miki would have slept through a good portion of it.  The silver lining in this is Janet (hopefully) gets a little rest before heading back to school, Bunny gets to recoup fully from a food poisoning sojourn, I met my tree house goal, and Miki is able to rest and sleep to make up for uncomfortable nights and recharge her batteries.  Till we meet again.

Miki’s brother, visiting from South Carolina last weekend, got me a good start on accomplishing my goal stated above.  By the time he left, I had some decking to put down and the railing to assemble.  We (he) got a lot of the heavy lifting and structure in place.  The dark cloud in that visit was probably our golf games.  We did not have our A games…maybe even our B games, but our silver lining was enjoying some tree house time accompanied by some cool crisp fall air.  Even flirting with hernias while working on the tree house was better than our short games on the course.

Toward the end of last week, Miki could tell her energy was beginning to dissolve, as it seems to do this time in her chemo cycle.  As that black cloud was on the horizon, she made one last hoorah by getting out pillow shopping for two rockers that sit on the front porch.  That’s right…two chairs that sit on the front porch as decoration…that evidently needed decoration themselves.  You might say they needed a splash of color, for those of you that watch too much HGTV.  But mine is not to question why, but to load her, drive her, and push her where she wants to go…so I did.  A couple of hours that would have been excruciating a year ago, were more than my pleasure that day.  If you haven’t been able to tell by now, what ever she wants, I am happy to say she gets.  It is the least I can do while she concentrates on her.  You might say the silver lining here (or not) is that I can tell you what is in every isle of Michael’s and Gordman’s!

Nothing better than pillow shopping to lift
your spirits...other than golf or poking your
eyes out.

The final silver lining began to shine out from behind a cloudy lack of Miki’s might this afternoon, as she announced she wanted to try and make her way to the top of her tree house.  I’ve been waiting for this since my two lumberjack friends, Shannon and Matt, lifted the first 16 foot, 8x8 post in place.  She was not sure she would be able to, but wanted to try no matter what.  We wheeled her across the backyard into the shadow of the tree house, parked in front of the ladder, and with her leg brace in place she began her ascent.  As she lifted herself with her good leg from one rung of the ladder to the next, while holding steady with her weak one, she repeated the process 15 times to reach the floor of her dream.  Meanwhile I was right behind her, so close, I could have been mistaken for another layer of her skin.  Was she winded…yes.  Was she worn out…yes.  Was she weak…yes.  Did she make it…YES!  She collapsed in her gamer chair.  She rested a moment, then as she regained enough energy, she released a few tears while expressing it was everything she had wanted it to be.  That is why I load her, drive her, and push her wherever she wants to go.  We sat there while she took it all in.  Looking up into the trees, looking out over the park, trying on her dream to see how it fit. 

With a small wave, so as to not let go of the ladder for an
extended period of time, Miki works her way up, and up...
(I lashed her arms and legs to the ladder just for this photo op.)

Celebrating her first ascent!

We were later joined by Megan and Shannon’s family, as all five found their way into the trees for a visit.  As they left, Kelly and Hannah stopped by to say hi and drop off a couple of scrumptious cupcakes for us (me).  They too braved their fears and climbed up for a view from the top.  As hard as it was for Miki to make it to the top and then down, it is now the motivation I’ll use to finish her dream.  That silver lining has some staying power.

The first family to complete the journey to the top.  Megan, Miki, Maizy,
Shannon, Marie, and Lincoln.  Lincoln is the one writing on Marie's back
with acorn juice.

Not that Megan was the most nervous going
up, but she was excited to be down.

My Zen from Home:  If you can’t have fun with a quasi invalid, who can you have fun with?  Over the recent months and weeks, I feel as though I have busted my butt to take as good of care as I possibly can of the one I love.  With that said, I do have my limits and sometimes she crosses the line with a request, suggestion, or comment.  For example, while in control of her wheelchair, I will take my hands off and let her go (for a second).  Pretty defiant, huh?  A few times I’ve told her to get up and get her own medication, or food, or toilet paper!  And today, after she asked for one of her evening treats…yogurt with some fruit mixed in…I prepared it, walked it over to her, held it out to her…and when she reached for it, I pulled it away from her as she gave me the stink eye.  I laughed, she laughed (sort of) and I gave it to her.  I guess my point here is that you can’t be a perfect caregiver all the time…that would be boring from both sides of the care.

Bonus Pics...

Where's the tree house...

There it is!  As seen from the park.

The railing, the decking, and the plywood footprint for the house part of
the tree house.

Touched

Two-thirds of Miki’s family visited us last weekend and the St. Louis third visited us through the mail today.  I was touched three times by three different Heynes this week.

Touch number one came from Millie, Miki’s mom.  I have accused Miki of running a seniors sweat-shop, using her mom to make her homemade cards, knitting scarves, and transporting home cooked meals across state lines for our consumption.  This last visit, after spending two days with her daughter, while Miki’s brother and I were working on the tree house (or playing golf), she stepped into my care giving shoes and got a taste of Wallieworld.  Millie came up to me during a tree house break and said she got a taste of what it is like to be me, taking care of Miki for a while.  She thanked me for being such a good caregiver to her daughter and it touched me that she would make the effort to share that with me after experiencing some Miki-time, even though she has expressed that sentiment a number of times before.  Just like we’ve learned from those we’ve met dealing with their own cancer issues and even though we share the word cancer, each path taken is a bit different than the next.  I am assuming each caregiver connected to each path also experiences things a little different than the next caregiver.  I would not substitute anyone for me on her path, but I draw the line at doing craft stuff!

Touch number two came from a moment Miki shared with her brother as they were saying their goodbyes, after he spent 3 days risking life and limb (tree pun…did you catch it?) adding part of him to her tree house.  When Miki reflects on growing up, there is usually a reference to how close she viewed her relationship with her brother.  Over the years I’ve witnessed a handful of times when those childhood roles came out to play and I could imagine them up to no good or supporting one another at a trying time as siblings do (or should).  Before heading back to the Palmetto State, they posed for a picture of their less than full heads of hair together, just one more thing they now share.  As her thanks for making the trip from South Carolina and working on her dream were expressed and their goodbye hugs were exchanged, she teared up during their heartfelt embrace, as did her baby brother.  At that moment, I briefly felt that childhood connection that only they can sustain, as life called each one back from their childhood to their daily lives.

Marty and Miki...or is it Miki and Marty...no, its Marty and Miki...I think!

Touch number three came in writing today, in a card her sister Gail sent from the other side of the state.  She and her husband Rik visited us a few times this summer, among numerous phone calls where she and Miki would catch up.  Her card was short in length, but mighty in it’s message.  She said someone suggested that you have a plant for each member of your family, so you can nurture them as you would your family member, when it is not possible to be there in person for them as much as you may want to be.  She was going to get a “Miki plant” and nurture it each day.

Miki continues to be stronger, brighter, and hungrier than anytime in recent Miki history.  She is becoming a bit more independent and adapting to doing more as her body seems to be finding its way back home.  Enjoying her strength while its here, knowing that this is a journey and you never know what is around the corner.  She touches me each day in ways words cannot do justice. 

Miki and her new sleeping while blogging yoga pose called,
Lying on Back while Praying Upward Dog.

Her dinner.

My dinner.

Her breakfast.

My breakfast.

My Zen from Home:  The “tree house” is coming along nicely and while I was eye level with a resident squirrel from the neighboring tree, upon which we are encroaching.  I looked at him (or her) as he (or she) was staring right back at me.  From their vantage point, sitting in the crotch where a limb joins the main trunk, they seemed to be sizing me up before skittering off to whatever it is that squirrels do.  It also has been “raining” acorns from the Pin Oaks that the tree house is constructed between.  It is that time of year when these oaks “go nuts.”  It cannot be more than a few seconds between the sharp sounding thumps of acorns hitting the plywood decking, some of which target my less than padded scalp.  If I didn’t know better, I would think that squirrel I had a moment with, was trying to “touch” me too!

The scaffolding is down and the magic ladder is up.

The "footprint" of the tree "house" is down, along with the decking around it.