Equanimity and Imperturbability

If you are going to have cancer in your life, you better have a healthy dose of equanimity and imperturbability.  Let me be more specific.  If you are married to, close to, going to take care of, going to visit, or come in contact with anyone that has been diagnosed with any one of the over 200 types of cancer, be prepared to grin and bear it (oops, idiom slip).

Without the tolerance gene from my mom and the understanding that this journey is all about my wife, Miki, I’m not sure I would still be cleaning out her commode at this stage of the game.  Another factor that has made this doable for me, is the fact we are no longer working, but not everyone has that luxury that has succumb to this epidemic of cells gone bad.  But it is perseverance that seems to rise to the top of the character chart, as I look at myself and others, that are not targeted by cancer, but are affected nonetheless.

Instead I have charged myself with handling the effects and affects cancer rains down on her.  And something that is a reoccurring theme on our journey is how customized each person’s journey is, as we hear each new story.  Two people may share the same type of cancer, but how they are affected by it is the wild card.  We humans are just lucky that way.

So how has my composure been tested?  Let’s start with the drugs/medications that are a necessary evil during this “hiccup” in her life.  For Miki, before she was diagnosed, the precursor to her chemo and radiation was the feeling of a pinched nerve in her lower back.  We know now that it was a tumor growing in her bone that was indeed applying pressure to a nerve that serviced her right leg.  The pain increased with time and so did the level of painkillers that she was served up to deal with said pain.  Without even getting into the side effects, which in themselves are unbelievable, I watched, along with many of you, as they turned Miki into not Miki.  Mind altering occasions that made me wonder whom I was talking to at times.   Muscle twitching that was just hard to watch take place.  Dry mouth that needed a constant supply of ice chips and not just any small piece of ice.  There are better kinds of ice to satisfy this need than others…who would have thunk it?  These are just a few that I haven’t blocked out of my memory yet.  The whole time, I know intellectually that this is temporary (I hope) and it is necessary to some extent, as a means to an end.  But I have to admit that I have smiled and even quietly laughed behind Miki’s back as she has exhibited drug induced behaviors like rapid fire speech and lightning like actions that would put some of my former students with ADHD to shame, thanks to some of the steroid based medications.  At the same time, some of these drugs set off fear in me, as they messed with her mind or a few times had me watching her closely to see if her chest would rise with another breath from sporadic breathing.  I can’t even begin to think about the chemo.

Then there are the “professionals.”  Thank goodness that most of them have been top notch.  Not only in their knowledge, but their bedside manner.  From the doctors to the nurses to the transporters…well done.   But, it is that one professional you cross paths with that makes you cringe a bit when you watch them do their job or listen to them when they think you aren’t.  It’s a skin crawl moment, followed by a “What the &#*% were you thinking?”  And the more you think about it, the more your systolic blood pressure increases, when you’ve had no history of hypertension.  But now you do…thank you very much!  Sorry, got a little carried away for some reason.  Hmmm.

Finally, there is the day-to-day care and support that I want to supply.  But her schizophrenic taste buds have played Russian roulette with the food we have on hand and has tested my speed and agility getting to the grocery store and back before an urge for a certain taste subsides.  Bless her little heart, I’ve thought of force-feeding her more than a few times…even drawn up the plans for it!  Just kidding, it was just that one time.  I also didn’t see the whole diarrhea thing in the small print section of the caregiver contract I don’t remember signing.  I will admit that I have emptied her commode so many times now that I have it down to an art form in the same vein as a NASCAR pit crew, not to be confused with a NASCAR piss crew.  I just hope we don’t encounter any fecal diseases by surprise just because I shaved off a second or two from my best time.  And then there is moving Miki from one room to another.  It’s not like it is just her moving from one room to another.  She has an entourage of stuff that follows her.  The pillows and blanket, the computer and cell phone, multiple choices of drink, things to occupy her time, and the pooper and it’s paraphernalia to cover the big items.  Two Men and a Truck has nothing on me!

I don’t rush out of bed in the morning thinking, I can’t wait to do whatever Miki wants me to, but as soon as I see her little baldhead and an occasional smile, I will do whatever she wants me to. For me it all boils down to patience.  We both believe this is just a chapter in our book.  We’ve made it through the beginning of this chapter.  It appears we are somewhere in the middle and even though the end is out there somewhere, I don’t plan on slacking off now. Remember, Patience is a Virtue, a proverbial phrase referring to one of the seven heavenly virtues (and as a bonus, it is an idiom too).  It is thought to date back to "Psychomachia," an epic poem written in the fifth century (yes, I Googled it).  And you know I am nothing, if not virtuous. HA!

We continue to connect the dots as we discover patterns and behaviors heading into round three of Miki’s chemo in another week.  We’re told the affects of radiation will linger for some time, but we hope to establish mileposts to measure future rounds.  

I hear Miki calling, she must need the commode emptied one more time.  I better hurry up and be patient!

My Zen from Home:  Things are looking up in small ways.  It seems like everyday now, Miki is telling me something she can do that she hasn’t been able to do for weeks or even months.  Little things that I don’t readily notice, but she can do or feel.  It’s the little things in life…to repeat an overused, yet underappreciated phrase.  Appreciate the little things!

A little thing!

Silver Linings

We are creatures of habit.  It’s different when you break a pattern, like 22 days of going to radiation, then its over.  It seems like such a long time ago, all four days of it, since it ended.  I sound as if it were me getting the treatment.   It is like there should be a switch and when “X” number of treatments is over, you should be healed or better or the journey should be over.  Nope.  I am sure you already knew that, but evidently I must have been hopeful.  It is like going on a multiday trip and you stop for the night, as the first leg of your trip is over, but there is still a long way to go. 

So in the mean time, don’t want to dwell on the reoccurring diarrhea, the frailness, or the flat out loss of energy Miki puts up with.  Instead, right now, I want to accentuate the positive.  For example, I walked the dogs a few days ago and a bird used me as a target for one of its little white poop missiles.  Now even though the mission was a fowl success (sorry), I had no idea I had been the recipient until I got home and saw the semi-dry coagulated clump of whatever that white stuff is that comes out of a birds butt with such effortless ease.  So it didn’t seem like such a big deal since I found it after the fact.  Had I taken notice of it in real time, I would have been beside myself with such fervor and probably turned around right then to go home and sanitize myself in some fashion.  But I didn’t have a clue and the dogs got their walk, I got some exercise, and the bird grew in confidence.  Everyone was a winner…sort of.

It reminded me of when Miki and I first got married.  We had befriended an orphaned baby bird and we had it outside sitting on a low hanging limb, trying to get it to do baby bird like things while we were working in the yard.  An old gentleman, who was out for a walk, stopped to visit with us for a few minutes.  Unbeknownst to him, he stopped directly underneath Baby Huey.  Yes, we named the bird and yes, you have probably already figured out where this is going.  Toward the end of our conversation, Huey let one go that found the left lens of the man’s glasses.  Without breaking the cadence of his speech, we finished visiting, he said goodbye, and we parted ways as if nothing had fallen from the heavens.  He walked off, apparently no worse for the wear.  He was either use to this happening to him or had no clue that it did.  Gotta see the positive in all things, right?

The same day I was targeted by an unidentified bird, I also had a flat tire on my bicycle.  I was about an even distance from either trailhead on the lake trail I’ve mentioned many times before when it happened.  I couldn’t just call Miki up and have her come and get me, as I have a few other times in the past.  Instead, I pulled out this handy little carbon dioxide cartridge that you attach to a little trigger mechanism and you can connect it to your inner tube stem and inflate your tire without a hand pump.  Pretty slick deal.  This opportunity gave me the chance to try out this little gizmo I recently added to my little bike pack of goodies.  It also gave me the chance to add a liner to the inside of my tire when I changed out the inner tube.  Crapped on and deflated, what a great day twofer!

Now if you are thinking, “WOW, this guy is more turn the other cheek than I ever gave him credit,” you don’t know me very well.  I could have very easily gone ballistic during either one or both of those two events and just lost my mind.  But since retiring and more recently…this unexpected bump in the road…worse things could happen and everything is relative…more so than in the past.

So lets get to some real positivity…

*The “treehouse” has not been denied by the city of Blue Springs, yet.  It is being taken to the higher ups to figure out how to deal with it, since it is a one of a kind structure they have not dealt with as of yet.  It has been referred to not as a treehouse, because that would not be okay, but as a “raised shed”!

*Miki had a good day today, in terms of minimal diarrhea.

*I didn’t get pooped on today!

*Miki’s energy level was on a higher plane throughout the day.

*I didn’t get a flat tire on my ride today!

*Miki ate more solid food today than in awhile.

*I haven’t cried in some time now, so there must be more happy events than sad ones occurring.

*Miki got a soft and warm beanie in the mail from my sister in California.

*Otto, Lucy, and Molly brought their family over to deliver some garden treats.

*Dee brought by some lovin’ from the oven, well from her kitchen…looked pretty tasty!

*Beth dropped off some culinary sweetness for those cravings that lack nutrition, but surge in calories.

*Miki has smiled more recently and that is how I gauge her progress.

These happy things might not get picked up on your posi-dar, but they sure make for a good day around here.

A new respect for bald folks out there and their thermostats controlled
by their heads.

How does this not make you feel better?

So what have we learned here today?  Positive…good.  Negative…good.  It all depends on how you look at it.  I guess it is all part of that whole “every dark cloud has a silver lining” thing…oops, just dropped another idiom bomb on ya!  BOOM!

The architect studied at the
Etch A Sketch School of Design.

My Zen from Home:  When Miki brought up the idea of a “treehouse,” it took me a few days to realize this wasn’t going away and how could I deny her this wish.  It’s not like she wanted something that the city of Blue Springs had never dealt with before in the Codes and Permits Office…oh, wait…  It’s not like she is asking for me to have sore muscles for days at a time while building it…oh, wait…  It’s not like the planets aren’t aligning to make it happen…oh, wait…  It’s not like it gives her something to look forward to and focus her efforts on…oh, wait…  At this point, it is the least I can do to offset what she has been served up.   Would I have not been all over this if she had not been diagnosed?  The point is...I shouldn’t have to ask the question.

Chemo: Round 2…CHECK - Radiation: Last Day…CHECK

As I write, radiation is not over yet, but will be in less than 12 hours.  Tomorrow marks day 15 out of 15 and last radiation treatment.  Dr. K. has been such a source of confidence for both of us.  From answering questions about bone re-growth to medications and side effects, this guy knows his stuff and in turn…our stuff.  He talks about it not as if it is as scary as it is, but the photons have a job to do and it appears that it is working.  He helped take the anxiety out of a serious set of circumstances while supporting our dignity and supporting this end of the journey.

Looking back, Miki was transported to her appointments lying down in the back of the car because she could not be vertical for more than minutes at a time.  The receptionist would come out to the car and let us know when they were ready for her.  Then I wheeled her in, helped her onto the narrow treatment “slab,” took off her shoes, and waited in the hall while she received her dose of radiation from 3 different positions.  The process was reversed and then repeated 24 hours later.  I wonder if she will walk in under her own power with her crutches tomorrow after riding in the front passenger seat to get there.  I know it seems like forever since treatment began, but things have changed for the better in 3 short weeks.  An important milestone on this journey will be celebrated Friday, August 23, 2013.  So if you happen to see a woman with her head hanging out the passenger window of a black SUV, bugs in her teeth and the wind in her hair…the wind washing over her bald head, it’s just Miki doing a little celebrating in the end zone.

Chemo on the other hand has a little more longevity in this game.  So even though Miki finished her second round out of a possible eight today, every three weeks we will pay a visit to The University of Kansas Cancer Center community location in Lee’s Summit.  A nice facility with super nurses (although we are keeping our eye on one of them) and friendly support staff.  I do not recall what mom’s treatment surroundings looked like, but this place is big, open, and comfortable, if you like a warm blanket, snacks, wifi, and bird feeders to watch out the windows.  I am guessing hers was not so much.  We have had two outstanding nurses so far and an excellent bloodletter, you know, the phlebotomist.  And the regulars, which I assume we are becoming, seem like family to one another.  Aside from the circumstances that bring all these folks together, you should be so lucky to hang out there with such real people.  If you are going to have such a shitty thing happen you, then you deserve to be attended to in such a comforting place with such compassionate people.

Miki’s chemo regiment of treatment requires 3 days in a row, each of which the majority of time is spent hooked up to a little machine that controls the IV drip of chemicals that the nurses have to “suit up” for, while attaching the tubing to her port or the bags to the little machine.  I imagine, it is similar to what the local HAZMAT team would do at any dangerous chemical spill, only this spill is controlled.  On day one, Miki receives two medications, preceded and followed by other solutions that come to her in about 7 different IV bags that are carefully customized in the pharmacy, adjacent to the infusion room (or chemo room to us non oncologists).  Seven hours later…viola (pronounced wallah…French for wallah! - or - there you have it)  Day one is over.  We are still learning the nuances of the infusion room, but apparently there are some recliners that are more coveted than others.  Some vibrate and heat up…that’s right…and you don’t have to feed them quarters.  Some patients seem to prefer being close to the bathroom, one on either end of the room.  And we can attest to the brilliance and convenience of that strategy!  And some get what is available or left over during peak traffic times.  But if you have some clout or maybe issues that may not be envied by your average chemo patient, there are two private rooms available, one of which we may have to experience before it is all said and done.  The second and third days, the two main drugs that are beating down the cancer cells, along with many other perfectly good cells, are served up separately, so your time spent being infused is almost cut in half.  That in a nutshell is the name of that tune.  There will be more to enlighten and educate on this process as time goes on.

The Infusion Room.  Miki is on the far side, just above center.

Again, taking a look back…Miki got her first round of chemo flat on her back in the hospital. Three weeks later she’s reclining in an industrial cousin to a Lay-Z-Boy for her second round, conveniently located in an outpatient clinic.  Again, things are changing for the better.  Keep up the good mojo work, it’s making a difference.

Zzzing toward the end of her treatment and after getting Skunked by me
in Cribbage...only after she beat me 3 times in a row.  The beating took
a lot out of her.  Who can blame her, she was SKUNKED!

My Zen from Home:  The first two days of Miki’s chemo this week, we saw two excellent nurses doing what was expected of them professionally.  Some procedures might seem redundant, but as a patient it’s being careful.  Our nurse today got lazy (admittedly) and skipped what could turn into a problem, but Miki nicely brought it to her attention and she seemed a bit more “on it” the rest of her time with her.  Miki didn’t get in her face about it, like she normally would (yeah, right!), but achieved the expected outcome nonetheless.  No matter what you are confronted with, you always have choices (my oldest sister once told me).  The problem is, taking the time to realize what those choices are and selecting the best one for the situation.  Miki’s choice today helped the nurse save face and brought the level of care back to where it should have been to start.  Shortcuts are meant for kids that are late getting home after curfew, not for being lazy at work.

P.S.  I know you are shocked that I posted two days in a row...first time on this journey.  Don't get use to it!

Treatments, Tinkles, and Treehouses

Sshhh!…she’s asleep.  Anytime Miki is sleeping it is awesome, but not for any of the reasons you are probably thinking.  Many of you know her to fall asleep at the drop of a hat.  She had a friend help drive her to North Carolina in May, because her driving gene is genetically engineered with a simultaneous sleep gene.  These days if her mind is not giving her a break, she is awake.  If her body is not giving her a break, she is awake.  If emotionally she is not getting a break, she is awake.  If all three are not giving her a break, it’s bad.  Each one exponentially adds more seismic activity to wherever it is that I keep my feelings until they start to crumble.  Unlike a baby that cries out and you have no idea what it is they need, Miki can describe what she is feeling, points to where it originates, and has an array of drugs to use, but sometimes it makes no difference.  Eventually it subsides, just like an isolated thunderstorm, lazily meandering across the plains.  Time out…I hear a tinkle coming from the TV room.  She is awake and I need to put on my wastewater treatment plant manger’s hat and do my job.

Okay, I’m back.

So, we have 2 out of 3 chemo days down this round and 2 more radiation treatments, finishing up on Friday.  If you hear a faint WOO-HOO off in the distance Friday, that would be Miki in anticipation of fewer side effects to wrangle with, even though the radiation effects will linger for weeks to come.  But at least the daily adventure will be over.  No more worrying if the diarrhea will interrupt her session, if the nausea will compound the starting, stopping, and turns made just to get to the appointment, or laying there with her bum exposed to the world preparing to get zapped (well, the world inside the radiation treatment room and the two techs working it).  Been there.  Done that.  Let’s not revisit it.  Movin’ forward!

Gonna keep it short this time.  I have a head to shave!  And it is such a pretty head.  I may lobby for a permanent hairless look.  The last item to touch on is The Treehouse.  I am coming around to the idea and can actually see it.  Now the challenge is seeing the same one that Miki is.  Right now it is a structural entity for me to get to know.  How high off the ground should it be?  Or another way to think if it is, how far will I fall while roofing it?  Siding material, lighter the better?  Size of the posts to hold it 14 feet up, yet anchored to the Earth in a 70 mph wind gust?  Just a few simple questions to research.  If you Google treehouses, you’ll find we will be in the company of the rich and famous around the world.  Now we probably won’t find Miki’s getaway featured on Treehouse Masters, that’s right, a TV show about Treehouses, but it’s not about that.  It is about something for her to focus her energy on besides the cramping, the nausea, the zombie-like look that only a lack of sleep can produce…the stuff that is cancer treatment.  Keep the good mojo flowing.

My Zen from Home:  When Miki smiles, it is a moment.  It has become a moment for me since this all began.  There have been more facial expressions other than smiles for more time than I can believe has gone by.  They are that rare.  To open a can of cliché…when she smiles, it lights up the room.  You place a baldhead on top of that smile and it brightens the day.  That’s a moment!

Ups and Downs

News Flash:  I have not cried since the last posting!  Not that there is anything wrong with crying, just puttin’ it out there.

Part I:

Mama Said there’ll be days like this.

The advantage to having older brothers and sisters growing up is that I was exposed to a variety of music.  As I begin to write about the last few days, the song One Fine Day by the Shirelles, popped into my head because of the words…”Mama said there’ll be days like this.” 

Well, my Mama didn’t tell me there’ll be days like this.  Days where the one I loved would have less energy than a wet rag sitting in the sink or seeing the life in her eyes fade in and out.  Maybe I should have paid more attention to my mama as she went through her chemo as I grew up, to recognize the signs of exhaustion in her eyes.  But I was just a kid tagging along with her to K.U. Med. Center for her treatments.  I was more interested in looking at the “city people” as we drove through downtown Kansas City on our way to and from.  But I have family and friends that have had cancer and gone through treatments.  I hear, see, and read about that cancer stuff.  Why does it seem like she is the first, when she has a wave of nausea come over her?  Instead of turning away food, why can’t she just eat?  Of course I know the answers to these questions, but I can’t control it.  And as the days go by under our roof, there are more and more reminders of my mom and how archaic cancer treatment must have been 35+ years ago.  Yet with medical break throughs, advances in technology, and all the cancer patients that came before us, the suffering continues…but possibly less.  So…that is the stuff I let in once in a while, just as Miki lets in some thoughts other than pleasant and positive. 

Part II

We got rid of the trailer, but we’re still white trash.

With the August weather a no show, Miki has taken advantage of getting outside, as you may have seen.  But we have bumped it up another level recently and moved her from a blanket on the ground to a La-Z-Boy recliner.  Now I have seen my share of indoor furniture…outside.  But never thought I would be an accomplice to such an act.  When the blanket wasn’t doing it for her anymore, why not bring out a lazy boy and side table outside to add a little more comfort to her sore little Raggedy Ann body topped off with her cute little baldhead.  I am continually surprised what I do when she needs something or it appears something needs her.  And that La-Z-Boy needed her bad.  It was quite a sight, with the orange extension chord draped to her computer, side tray table with multiple refreshments, and a sheet camouflaged port-a-potty at the ready.  I think the only thing missing were a dozen or so spent cans of PBR tossed around the yard and maybe a baby blue, ’71 pinto, with 3 wheels still in tact.  Okay, enough stereotypes, but I’ll bet some distant neighbors and passersby in the park were thinking, “There goes the neighborhood!”

She holds a can of Ensure, but the contents are surely alcoholic!

I did enjoy the look on her face when she fell into the recliner.  It resembled the same face, the first time she came out to lay on the blanket.  After having been cooped up inside for what must have seemed an eternity, she made her way from the wheel chair down to being spread eagle on the air mattress, situated on the blanket…and just wept.  She literally dug her fingers into the grass and clutched the Earth like she wouldn’t ever let it go.  With the recliner, it was just a smile of comfort as she disappeared into the cushions.  She stayed there, listening to a book on tape until her cheeks couldn’t smile anymore.

Yesterday, we worked our way out to the tree swing, where we sat for some time.  She was pretty bundled up, with a sweatshirt up around her cute little baldhead (she has needed more warmth than normal lately) and we talked about the tree house she is envisioning under the last two Pin Oaks.  Stay tuned.

It's not winter, it's just Miki.

The coming week will be a big one.  Miki is starting her second round of chemo out of eight and finishing up her radiation treatments.  Her first round of chemo was administered in the hospital, due to the pain she endured in an upright position.  Things have progressed in that area since.  Now she can sit up with much less pain.  It will be an effort on her part, but it beats the hospital.  Her radiation should end this coming Friday.  Evidently these treatments are the gift that keeps on giving for a while after they have ended.  It will be interesting to try and see what side effects we can pin to what treatments.  Will the chemo be any different without the radiation in tow?  Lots of questions looking for answers.  With a rising awareness on her vulnerability to the effects of low white cell counts, she is becoming more sensitive to the germs hanging around out there and the possibility of something making this process harder on her than it already is.  We have acquired some surgical type masks for our future visitors, so be prepared.  It is not a bad breath thing.  If it were only that simple.  One thing we know for sure though…she has a cute, little baldhead.  Have I said that already?

P.S.  Just as I expose her darker moments, she seems to have had a remission of sorts.  Just since I have been writing this evening, she has eaten, exercised, and is now drawing out on the deck…in her La-Z-Boy!  A 180 from the last few days.  The light is on…AND SHE IS HOME!

An artist at work.

My Zen from Home:  I was riding my bicycle a few days ago on the lake trail and I came around a corner and up a small rise to find myself tailgating a large yellow Swallowtail butterfly.  It seemed like more than the few short seconds it must have been, but I came up on it at eye level and was quickly right behind it.  I found myself drafting off a butterfly without it knowing.  As quickly as I came upon it, it veered off to the left and I was back to bucking the wind on my own.  You probably had to be there, but I will not soon forget flying with a butterfly.  I am hoping I can say the same about this side excursion Miki and I are on.  We came upon it, it lasted a short time, and we set out on other adventures.

What a Difference a Day Makes

I haven’t ridden my bicycle as much since this adventure started back in May, so when I do get out, it seems a bit more special than just a workout.  For example, my last ride about a week ago, I ended up riding the trail through the park in my fastest time, but its not like I set it as a goal for the day.  Today’s ride was really pleasant with a nice breeze and low traffic on the road.  I was feeling pretty good until I came around a corner on the lake trail and saw a guy that I’ve seen before.  He is always sitting at the same place, right before a footbridge over a creek.  He usually has a dog with him that doesn’t seem to mind me whizzing by.  What caught my eye this time was this man taking a swig off a beer bottle that he quickly lowered from his lips and slipped down out of sight as I rounded that corner into his view.  Any other time it may not have seemed out of place, but it was 8:23 in the morning.  How crappy would your life have to be to have beer for breakfast?  The small cooler he had by his side indicates…pretty crappy.  If nothing else these last almost 3 months, I have become more sensitive to the paths others are on.

I got home from my ride to find Miki zzz-ing away, right where I left her.  While sitting on her side of the bed to take off my shoes, she made a comment about a hair tickling her face…the girl is constantly shedding.  I leaned over to run my fingers through her hair and brought back more than the normal few hairs between my fingers.  Two weeks to the day from the start of her chemo, just like they said, her hair was beginning to come out.  I had been anticipating this moment, but hoping she would be the exception.  On the other hand, she was not concerned with the possibility of losing her hair to chemo since day one, but she did not see it coming this morning.  Just as you see on TV, the movies, and hearing from friends, it was coming out in small bunches.  In order to save as much as possible to go through the day ahead, we stopped touching it and treated it delicately until she was ready to shear it all off this evening.  We called David and arranged for he and Alice to bring over his barber shears after dinner.

In the mean time, if you were losing your hair, what would you do?  You go HAT SHOPPING!  Can I get a…“Whup, Whup!!!”…to quote a friend of ours in a text today.  Miki was excited to find something that would become a friend to her baldness until her hair would return.  After radiation today we hit 3 stores, picked up 10 hats, and headed home before nature could sneak up on Miki’s bum (diarrhea seems to be lurking around these days).  It was a good day out!  She enjoyed trying on all the possibilities and my job was to follow her, cleaning the loose hairs out of the hats that wouldn’t make it to the cash register.  With the offers from friends to share their hat collections and scarves, Miki should be set for the duration.  I am not normally big on shopping, but today was a good shopping day!

Now this kind of shopping I can get  in to!

At 6:30, my family ascended on our deck for Miki’s buzz cut.  Barb, Lynn, and Alice removed longer locks to be used at a later date.  They will be used to accessorize some of the hats to trick the untrained eye into thinking they are looking at a woman with a full head of hair.  Little will they know that underneath the disguise is hiding a scalp, as soft and smooth as a baby’s butt.  Then David took   the electric barber shears to even it all up, down to the nubbies.  Finally I attempted to use my electric razor to achieve the finish on a baby grand piano.  I didn’t quite get there, but with some shaving cream and a razor…tomorrow I will claim victory.  All in all, it was a smooth operation and a bald, beautiful Miki emerged from all the hands that took part.  Just yesterday, Miki was commenting on how much she loved her new haircut and how cute the curls were.  She’d spent most of her life fighting them, when she evidently was just looking for the right haircut.  And now without the long locks or the cute curls, she is the same adorable person that I have always known.  What a difference a day makes.  I won’t be running my fingers through her hair for a while, but her cute baldhead will be getting lots of kisses.  We’ll chalk this up as a good day.

In the beginning...

...in transition...

...follicles temporarily out of order!

My Zen from Home:  On the chance that my testosterone level may suffer every time I mention me crying or getting emotional, it happened again.  This morning, after discovering Miki’s hair was escaping, she sat up in bed and I was just looking at her as she seemed to be taking it all in stride.  Tears just welled up, as I was thinking this should not be happening to her and it hammered home that this experience just got more real.  Since May, I have seen Miki as weak and vulnerable as I have ever seen her.  I’ve watched her sleeping, waiting in anticipation to see if her would chest rise, in hopes of taking another breath.  Now losing her hair is just a glimpse as to the battle that must be raging inside her and the intensity of the drugs fighting for her.  Sometimes it is enough to make me want to have a beer for breakfast.

 Bonus Photos...

Fieldtrip!

Eat happily!

Resting with watchful eyes.

Down, But Not Out

Side Note:  Yesterday we employed a new tool in our arsenal…a portable commode!  Having had it at our disposal now for less than 24 hours, I can tell you it is a lifesaver, if the speed at which you move competes with a tortoise.  I can clean that thing out and have it ready in a matter of minutes.  Sometimes that is impressive and sometimes it could be too late!

My day started out with some foreshadowing.  After being up throughout the night with Miki, as she began battling another side effect beginning yesterday … diarrhea … we both have a slow start to what would be a rare, cool August day.  Still completely exhausted, Miki shares with me she doesn’t have the strength to go to her radiation treatment today.  I sort of quietly panic in my head and respond with the opposite, thinking it is not a good idea to let those cells have a day off, lets get’em while they’re down!  For a woman that hiked up the highest mountain in Colorado, Mt. Elbert, seeing her try to catch her breath from just rolling over on her side, it was hard to keep pushing the idea of making her appointment.  And with that, I disappeared into our bathroom to take a shower.  Then it hit me.

I have been pretty focused on being the man or the strong one, since this thing began.  And only a few times have I broken down with her or alone, when the perfect storm of emotions came together.  But no public outbreaks, thank goodness, just her and I, alone, discussing her, me, and us.  An occasional tear out of nowhere would surprise me driving back and forth to the hospital or sitting in the early morning light of day (not real familiar to me), as the dogs put away their breakfast.  But today was different.

After closing the bathroom door and turning on the shower, I sat down for a moment, and before I knew it, I was crying into my towel.  I don’t know how to explain it.  Other than a few choice days when I cried in my classroom while I was still teaching, have I experienced something like this (teasing…it was actually just that one day…still teasing).  I think the thought of her not attending her radiation appointment was a sign of giving up and I was not about to let that happen.  Her giving up is not something I’ve let enter my psyche.  I let it go, thinking she would rebound and have the strength to make it.  Even after I called the receptionist to reschedule for a later time, the diarrhea and her lack of strength stood strong throughout the morning.

By late morning, Imodium AD was enlisted and the radiologist’s nurse called to check on Miki’s condition and to offer any help she could.  By then, we had moved our party for two out into the backyard (that was an adventure on its own), where Miki wanted to lay in the sun.  This involved the dogs, the wheel chair, and the new commode.  Remember, she can’t just get up and run in when the feeling hits her.  The sun part lasted a couple of minutes before turning into a cloudy day with a nice breeze.  So we lay out on the blanket, enjoying the rays that made it through the clouds, with the dogs coming over to check on us once in a while to see if we needed licking. 

Not Where's Waldo, but...Wheeeeerrree's Miki?

There she is!!!

At one point I looked over and saw that Miki had tears sliding down her nose and cheeks.  She has been incredibly strong through this process, but doubts and what-ifs are hard to keep at bay, not to mention her exhaustion and frailness.  At this point, crying had taken on the Yawning Effect, where one person does it and another joins in for no apparent reason.  I wouldn’t say there wasn’t an apparent reason, but crying twice in one day is not something easily accomplished for me, let alone once.  Making her radiation appointment came up again, and again without resolution.

Having been outside for a while now, and remember Miki has been “going” about every hour… it is time “to go.”  With the commode at the ready, I won’t tell you our secret to blending into the backyard while in plain sight while going potty, so imagine what you would do given the situation at hand.  Now, talk amongst yourselves.

We finally headed back inside, with a number of trips to get all the paraphernalia that accompanied us on our outing.  It hadn’t been but minutes since our re-entry, but Miki’s urge sent us (me) in a panic to get the port-a-potty in place, in time.  Once it was ready and Miki made efforts to get up from the couch to use it, it became crystal clear that because she could hardly lift herself off the couch and turn around to sit on the commode, there was no reason to push making the appointment any longer.  Two minutes later, it was canceled.

Through the afternoon and evening, more Imodium eventually slowed things down and the rest of the day was relaxing, with only minimal pee breaks to challenge her.  Miki did gather the strength to do her exercises late evening, then decided sleeping on the couch, rather than upstairs, would suit her just fine. Since everyone’s experiences are a bit different, I can only assume her exhaustion and maybe the diarrhea will be her M.O. as she continues treatment.

Since there was a commode-like overtone to this posting, I will leave you with my two favorite Confucius-isms that pertain to this topic…

Confucius say (or not)…

It take square ass to shit a brick.

Man who fart in church sit in own pew.

Oh, one other thing…I managed to not cry the whole second half of the day…not that there is anything wrong with that.

My Zen from Home:  I hope to never experience the immense lack of energy that Miki has due to her body using all its resources to reclaim her health.  When someone can carry on when there seems to be nothing left to draw from, yet they dig deep within to find what no one else can to continue…that is a strong person.  That is Miki.  

Wait for iiiiiit ……….….. THUD!

I can’t say it has been easy to write about someone else’s journey, which is why I am trying to emphasize it from my point of view.  I don’t understand what it is like to have your voice go up and octave over night and try to cough the next morning without enough power behind it to clear your throat.  All for no apparent reason, then carry on like nothing happened.  But I’m trying.  Lately I’ve had some conversations with Miki to understand what is motivating another pain pill or why she can’t do more than 3 reps of a seemingly easy exercise from the physical therapist.  That is why this trip includes both of us, but she’s in the driver’s seat.  She is the one that understands what she feels through the steering wheel as she rounds a corner and feels the road as she accelerates ahead.  She is the one that hears a slight change in the pitch of the engine and decides to pull over to look under the hood.  But to be in the pit crew, I have to know what is going on in order to support the effort.  Okay, enough comparisons of Miki to a car…

It’s MY BIRTHDAY today!!!

Enough about me!  Now back to her.  Actually, as friends and family have sent their birthday wishes my way, I received some pretty sweet gifts today, not to mention some sweet treats left on our front porch early this morning (thank you very much, you know who you are).  For example, Miki has felt less of the debilitating pain lately that has kept her horizontal for almost two months.  This means less pain meds and in actuality she is off all meds now except one that is to protect her kidneys during chemo.  That in itself is a pretty nice gift, don’t you think?  She also had more of a twinkle in her energy today, before it got siphoned off through the day’s activities.  That was a pretty nice wrapping on the gift.  And to top it off…we showered together!  Okay, bring the heat down a bit.  I got to wash her hair.  Her new hair!  She cut her almost waist length locks, partly in anticipation of losing her hair (if that happens).  Now that it is within a few inches of her scalp, it was much easier to lather it up and get my fingers through it than the last time when it was 10x longer.  And in order to keep most of the water within the confines of the shower, I joined her.  For more details, it will cost you!  That was a nice big bow on the gift I got for my birthday.

Before scissors...

...in anticipation.

Oh, I almost forgot…the THUD from above.  Do you recall I was waiting for the other shoe to drop?  I was referring to what side effects may rear their ugly heads during this process.  It appears so far, that it is pure exhaustion.  When you can’t hold your head up for more than a few minutes at a time…when you think you can’t make it to the bathroom and back before sundown (and its morning)…or you have to sit down on the top step of the staircase and scoot down one at a time…you are utterly exhausted.  Miki has become the poster child for abso-friggin’-lute exhaustion.  Its not pretty, its not attractive, its not glamorous, but her hair is.  The side effects from chemo and radiation could be a lot worse, so I count this as another gift.

So unless the idiom referred to above uses a three-legged person as it’s inspiration, Miki’s side effects to treatment seem to be minimal at this point and we hope there are no other shoes to drop.  As birthdays go, it was a significant one.  Not because I am another year younger, but we spent another year together.

My Zen from Home:  Wow.  When Miki and I went to her radiation treatment today, we settled into the waiting area with approximately 8 chairs, 4 on opposite sides of this small room facing each other and a small TV mounted on the end wall.  The first two visits, I think we saw one other person waiting their turn to be zapped.  There must have been a blue light special today, because it was almost standing room only.  There were two wheel chairs, a gurney, a woman with a walker, and 6 of the 8 chairs filled.  Granted, 4 of the people there were supporting those there for treatment, but 2 wheel chairs, a walker and a gurney.  It was like a puzzle when the furthest one from the door was called to get their treatment.  But that is not the point.  The point is, that we were almost literally face to face with other cancer patients and their supporters (if they had one).  We are now those people.

Waiting for the Other Shoe to Drop

Is it just a coincidence that the title of this posting is an example of an idiom?  Yes.  Do you think I would try to incorporate two language arts lessons in a row…do I look like an idiom to you?  For whatever reason, this expression found it’s way into my head and it seems to fit what I’ve been mulling around for a while.  With a few computer keystrokes, I found one it’s possible origins.  It seems to be most likely from the 1950's, when a British sitcom depicted an individual who lived in an apartment beneath a man who worked nights.  The person in the lower apartment would be sound asleep when the tenant of the upper apartment came home.  The tenant in the upper apartment would sit on the edge of the bed to take his shoes off.  The first shoe hit the floor with a loud bang, awakening the sleeping tenant in the lower apartment.  The groggy neighbor would remain awake until he heard the other shoe drop.  The tenant in the upper apartment would remember that he had a sleeping neighbor below, and take the second shoe off and carefully place it on the floor, making no noise. The groggy neighbor would then yell, "For God's sake, drop the other shoe!"  In a sense, this is what I have been experiencing. 

It seems expectations can be of help or a hindrance on the path we are on…time will tell.  The anticipation of Miki’s first chemo and radiation treatments, this last week, came and went without fanfare.  That worked out well, because who likes fanfare when you are hooked up to an IV?  We have and continue to get anecdotal data from other’s experiences, but we continue to go into this with the focus that this is Miki’s story being written and it won’t be exactly like anyone else’s.  But knowing the possible side effects to be prepared for that others have experienced seems like it would be helpful, so as to not be caught with our collective pants down…oops, sorry.  I said I wouldn’t start throwing idioms around…I guess you can’t teach an old-ish dog new tricks.

Even though it is early in Miki’s treatment, at times it seems as though I am waiting for the side effects to show themselves or as the title indicates…the other shoe to drop.  It is Sunday night, the third day after chemo and the second after radiation.  Throughout the day she has been sleepier than before, along with some new feelings that might fall under the nausea umbrella, but nothing severe.  I am seeing this as the soul of the “other shoe” getting into position on its way down.  Again, time will tell.

Not that I know a lot about cancer treatments and how people react to their bodies being challenged to extremes to gain their health back, but I find myself watching her as she naps during the day and wonder how she will be challenged in the coming weeks and months.  It tears me up to see where my mind goes, but I know that I need to stay on the same page she’s on.  As much as I want to be on this journey with her, it’s hers to live.  I can’t take the nausea away, I can’t take the crap out of how she feels, or re-grow the white hair she loves (if and when it goes).  I can’t feel what she feels.  But I can dish out her medications, rub her head and scratch her back, and push nutrition in one end while cheering it out the other.  I am not sure I would want a crystal ball to foresee what is heading our way, but I am not afraid of it either.  Preparing for the worst, but seeing the best.

What has been hard so far isn’t taking care of everything under the roof from sun up to sun down, asking her to repeat virtually everything she says (due to her higher pitched voice, thank you meds), or flailing around the kitchen trying to actually cook something edible.  That stuff is easy.  What is not, is seeing the effects of the medications she is on, her once strong muscles less than what they were, and that bed head she gets with her new hairdo…the bouffant is not back that I know of.  Unless chemo has some tricks up it’s sleeve, when Miki kicks the pain caused by the pinched nerve to the curb, chemo will be that much more bearable.

To end on a positive note…this experience so far has us communicating more and you might say having more quality time.  She is getting more head rubs and back scratching than a new puppy.  I am taking care of the house and actually starting to enjoy parts of it…some cleaning things…not so much.  And she is coming to grips with and letting go of me putting things where she didn’t.  To use one of her favorite company names, Life is Good …it’s what we’re doing.

My Zen from Home:  Over the last few months this has been going on, the word miracle has been brought up from time to time.  In hopes of Miki getting relief from the pain she has incurred and the diagnosis revealed.  Now I am not one to brag, very often, but I recently cooked up a dish called Cozy Comfy Chicken and Rice from the cookbook entitled, “The Cancer Fighting Kitchen.”  I am not saying anything here, but that dish made her feel better after she ate it and it is the first time in my cooking history that I have used saffron as an ingredient, not a word sung as part of the lyrics in a song called Mellow Yellow, by Donovan in 1966.  These seem to be fingers pointing at a miracle, plus the fact I enjoyed creating it in the kitchen, not in my woodshop.  Miracles could be in the eye of the beholder, like beauty.