Constant Change

The changing of the seasons is always a welcomed experience in Alabama.  To go from the exhaustive heat of Summer to the crisp (albeit brief) chill of the Autumn air to landing the plane in the cantankerous, somewhat unpredictable Winter... the narrative of the changing seasons parallels life so well.  As a family, we've enjoyed some really great, memory filled moments over the past 6 months; we've also had some really tough, also unforgettable moments during that time as well.  The main takeaway is that much like the seasons, changes in life are inevitable and with each of life's seasons there are ups and downs and, yet, everything keeps moving forward.

Undoubtedly, it seems that some of my recent, relatively vague facebook posts have generated a little bit of curiosity so let's shoot back to a little over a month ago (right before Christmas) and recap what's been going on.

This stands to be a fairly long post catching everyone up so if you really don't want to get into the details, scroll down to the section that's broken out with a line of "=====" as it'll be a quick summary of what's happening.  If you want to dive a little deeper just keep reading...

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Detailed Update

So, our family made the decision around Thanksgiving to head to Texas for Christmas time.  Though, there was certainly hesitation on my part, Ashley asked to go because she wanted to see her family and spend time with them.  Knowing that these trips are fewer and farther between than we prefer AND that as time goes on (all things considered) it will become increasingly more difficult to make the trip through four different states, I yielded and plans were made.

Now, prior to us heading to TX, Ash had a doctor's appointment with her NeuroOnc.  **Pausing the story for a second to just praise God for putting this doctor in our journey.  She is, hands down, one of the greatest encouragements throughout this entire process.  I'm not sure Ashley, nor I, could ever tell this doctor how much we appreciate the personal attention she has given to our family as we've walked these miles.  It's clear to see God's provision here** Ok, back to the narrative... We went to see the doc and we communicated the (aforementioned in previous posts) decline in Ash's cognitive function (memory, writing, reading, speaking, stability, etc.). One of the most pivotal moments in our conversation was when we mentioned going to Texas for Christmas.  Without hesitation, her doc said it would be a really good idea for us to go.  On the surface, that's a pretty benign statement; but, in the moment it struck me.  Not sure if it was the tone or the air of the conversation (following on the heels of the cognitive conversation), but it was one of those "you should really go to Texas and spend time with family" comments as in 'go make memories, now'.  That moment hit me pretty hard.  Ash didn't pick up on it; and the doc may not have meant it the way I received it... but it was definitely a moment that has continued to stick with me.  That moment was really a turning point on my hesitation about the trip; in fact, it really fueled me to make this trip happen.

Fast forward a couple of weeks and it's time for schools to start breaking for the Christmas break.  Our oldest was able to get out a day early because of their staggered school schedule (thanks Covid; <sidebar> that's an entirely different conversation (Covid, School Schedules, Work, etc.) but wow, something I think we've all learned during the past YEAR is that of resiliency.  No matter how tough or unpredictable situations can get, we still manage to put one foot in front of the other and muster through (even if one foot in front of the other sometimes feels like standing still).  This era has taught me a lot of how the Lord certainly equips for every season.  Even when I feel like I'm at my wits end at times, He still provides.  No matter how narrowly focused I become, He still presides over everything and provides richly.</sidebar>) and the youngest was wrapping up the semester in daycare.  So, they were able to head out with Honey a few days earlier than Ashley and I to TX.

This weekend break (from the kids) was the first we've had in MONTHS.  It gave us a few days to breath and sleep in and eat meals we enjoyed and watch tv shows we never get to watch and work on the house and... well, you get the point... it afforded us some moments to shed some responsibility and those moments were greatly appreciated.  Looking back on it, I didn't realize how much we were going to need those moments of refreshment.

We went to TX for a week, Monday to Monday.  Each Monday was a travel day (about 8 hours on a fairly dull I-20 stretch across two full states and partially through two others).  At the risk of starting to sounds like an old guy, I used to make this trip a LOT and wouldn't think twice at it, but now-a-days, that trip is LONG and tiring.  If I think it's long and tiring, it is CERTAINLY long and tiring for Ash.  Her stamina is significantly diminished and that trip proved to be incredibly arduous. 

We arrived in TX and enjoyed time with family.  The girls had a great Christmas; we all did, in fact. We got to shed some of the day-to-day responsibilities from back home and were able to just rest, relax and do new things.  I learned more about bee keeping than I'd ever hope to learn in Alabama.  Ash was able to visit with some friends and see most all of her family.  It was a great trip all around in those aspects.

Though, during the trip a couple of things really started to become bothersome; these things will play into the next couple of weeks.  Right before we actually made the trip to TX, Ash developed a sty on her R eyelid.  You want to talk about an highly inconvenient place to develop an infection... it's the eyelid.  Needless to say, we started a course of antibiotics for that infection right as we were leaving for TX.  It continued to get worse as the days carried on.  We upped the strength of those antibiotics for a few more days before seeing a doc in TX where we started a third course of antibiotics.  Nothing really put a dent in this infection.  I'll put a picture below of what it looked like; but all of this to say, Ashley's ability to fight an infection is nothing like it used to be.

The second thing that became apparent during this trip is that Ashley's ability to carry a conversation continued to wane.  Her speech and communication, in general, reached levels where it became a challenge to sometimes follow her train of thought.  At the time, I think I dismissed it as nothing more than fatigue (which was also notably increased) and weariness associated with our travels and the holiday excitement.

I guess being on 'vacation' applied to my observation skills as well because I really wasn't connecting dots that I should've been at the time.  But, with all of that working in the background, our time in TX came to a close and we made the journey back to AL.  The trip was, again, uneventful and without consequence.  We made relatively decent time (typical dad comment).  We pulled in to our driveway and made our way into the house.  Ash was, understandably, exhausted.  We got dinner and retired for the evening.

It's at this point, the fun (emphasized, but incredibly sarcastic) began.  In the following paragraphs, I'm going to outline what the remainder of the post-Christmas week looked like, but here's the quick synopsis: The final weeks of 2020 ranks 2nd.  Second to what, you might ask... Second to a series of days in late 2017 (circa October/November).  Plainly speaking, this week would prove to be the second hardest week I've faced during this whole journey.  [It was a week that almost brought all of the eventual realities, that we keep tucked away and prefer not to talk about often, to the forefront.]

Tuesday, Ash is off.  Fatigue is ridiculously through the roof, conversations are broken at best, appetite is shot, eye infection is blazing, seizures are firing right and left... not a fun picture.  Vacation was over.  Game time.  (<sidebar> In some strange, odd way... well maybe not that odd to others who have been in similar situations... I find myself really settling in to those tough situations now; not that I really enjoy them (because I don't), but I don't shy away from them like I once did.  Maybe it's because a sense of duty is something that drives me.  Maybe it's because, in some ironic way, I can control my response/efforts to these moments (and it's one of the few things I can control these days).  Ultimately, in these situations (the really tough situations) it is because God has faithfully equipped and provided during these times. That's honestly the only reason I settle in...</sidebar>)

So, Tuesday is spent praying, observing, resting, sleeping, medicating, relaxing, planning, assessing, etc.  The eye isn't getting better.  The fatigue isn't getting better.  The seizures are getting worse.  The atmosphere is getting heavier.  The air is getting thicker.  Not time to panic, time to plan and execute.

We set up an appointment with her PCP for the next morning to look at her eye.  Excellent, a plan. Going to bed Tuesday night, I thought that we'd round the corner in the next 24 hours and we'd be ready for the girls to get back on Friday. (The girls stayed an extra week in TX with Honey and Poppa; just to give Ash some rest time and me some time to do some house projects/clean up Christmas decorations which is funny in hindsight to think that this was the plan... Praise God, though, that He worked this whole thing the way He did; as having the kids out this week proved to be one of the biggest blessings)

Wednesday arrives.  Ash and I head to her PCP.  She's not really able to do much other than maybe prescribe (another) antibiotic.  She referred us to the Eye Hospital Emergency Department.  We spent the next couple of hours there for them to get a solid course of action together.  Felt good when we left there.  Whew... things are leveling off... at least that's what I thought.  

We get home and someone bumped the table of dominos. Ash couldn't stand on her own without assistance.  Uh-oh.  We've had moments of instability lately, but nothing too serious.  I come alongside her and escort her from the car to the house.  I'm having to support her WAY more than I've ever had to.  It was certainly a deviation from the norm.  We breach the doorway and I look over at her and she's as white as a sheet.  She motions that she's about to throw up so we book it to the trash can.  After a couple of dry heaves, I ask her if she's ok... no response... (internally, my brain starts going bananas with alarms and whistles; hey buddy, we've been here before; it's been a while, but you've seen this before... loss of color, poor communication, feeling like she's gonna throw up... she's about to..........) As quickly as my brain is putting the pieces together, I just wrap my arms around her and hold on as she goes dead weight on me.  I have horrible body mechanics at that moment so there's no moving for either of us... just holding on until she comes to.  15-20 seconds of holding dead weight seems like 5 minutes. She starts to put some weight in her legs and I get her to the couch.  I get her some water (of which she takes a couple of sips) and then she curls up on the couch and sleeps for the next 5 hours.

Ok, at this point, I'm starting to put the previously noted dots together.  We've got a series of things working against us here.  How deep is this rabbit hole going to go.  Around supper time that evening, she wakes up and is essentially incoherent with her speech.  I figure out that she needs to get up and use the restroom.  She's still not able to go anywhere without significant support from me.  We work our way through that evening.  She STRUGGLES with her medication and with eating much of anything for dinner.  During the night, she has a handful of seizures.  Enough to wake us both up at times.  They are still focal and in her R foot/leg, but significant nonetheless. 

Thursday rolls around and she wakes up and is able to communicate a little better.  (whew, out of the woods... let's keep this up) She eats a little better for breakfast.  But, around lunch, seizures have picked back up and her speech is shot again.  She still can't go anywhere without serious support.  All of this prompted me to reach out to her NeuroOnc.  She and I had a very candid conversation about where we were.  By all accounts, everything that Ash is experiencing is an indication of this disease progressing and moving into a stage that none of us want to be in.  Words like hospice, palliative care are being used and there's even discussion of timeline expectation.  (Ok, these are crushing moments here.  I know I'm not fully capturing the story here, but that lump that makes its home in the base of your throat... well, it's there and not leaving any time soon).

As we wrap up that phone call, we make a plan to deploy some additional steroids and adjust some of her seizure meds to try and regain some positive control.  She asked if we wanted to go in to the hospital.  (This was probably the RIGHT move, but the girls were still out of town and wouldn't be back until Friday.  Ash and I had previously had some talks about going in to the hospital, knowing that if we ever went in there is a high chance that only one of us would come out; is that rational, no; was I thinking rationally, no; so I made a deal with the doc in an attempt to hold out until the girls got home and Ash could see them).  I agreed that if things got out of control for when I felt comfortable dealing with (which at this point, the house would have to be on fire and no hose/water bucket available; only then would I submit to being uncomfortable dealing with things) we'd go in to the hospital.

Thursday was much of the same as Wednesday.  That is, until Thursday night.  Ash motioned she wanted to get cleaned up (as she had gone a couple of days now without a shower and she thought it'd help rejuvenate her).  I became a nurse for the next hour.  We got her cleaned up and as we were getting her dressed for bed... her words were no where close to being correct.  She couldn't figure out what to do with her clothes (meaning, she looked at them but didn't know what to do with them).  So I started to help her get dressed and then I saw something familiar.  Zero color in her face.  Words are slurred.  Uh-oh... here we go again.  I process it faster this time; so I bear hug her and she goes dead weight again.  I got it this time.  I carry her to the bed and get her laid down, finish getting her dressed and tucked in.  I notice a couple of focal seizures in her R foot and R hand at this point.  Ok, not a good way to end the night, but last night she went to bed and "slept it off" and was coherent when she woke up. So, I assume we can repeat that. I move to the other end of the house and do the dishes and some laundry. (At this point, I'm just replaying words like 'hospice, palliative care, end stages' in my mind and I punched my first class ticket to the struggle bus at that point) Ok, enough of that, back to it.  

I get in bed that night, and CAN NOT SLEEP.  Literally, every 20 - 30 minutes I put my hand on her chest to feel a rise/fall, check her pulse, hold her hand, feel her foot... I didn't sleep.  I couldn't.  She had seizures through the night and wouldn't come to when I'd try and ask her questions.  (Ok, I fully admit we should've gone in to the hospital... I know we should've... but I didn't.  The girls would be home tomorrow and if this is the endgame, my girls will say 'goodbye' to their mother so I beat that idea into submission... we're riding this out one way or another right here)

She wakes up in somewhat of a fog Friday morning.  I dose her with (to date) the largest dose of steroids she's ever had. By midday, she's regaining some of her composure.  Still unsteady.  Still choppy communication.  But better than the previous two days.  As her doc said on our phone call, let's 'get some mileage' out of increasing her steroid and that's what we're doing.  For the remainder of the weekend, she steadily leveled off, albeit not back to pre-TX trip, but we shunted the spiral downward.  Praise God!!! 

As a father shows compassion to his children, 

so the Lord shows compassion to those who fear him.

Psalm 103:13

This week was such a gut punch.  Uncomfortable conversations between Ash and I.  Even more uncomfortable conversations with our girls.  We sat them down and explained what was going on with Ash.  With the information we had at that moment, not knowing what the future held; we thought it was wise to talk through this with the girls.  HARD HARD conversations.  The youngest can repeat back what we said, but doesn't really get it. (sorry if she goes around talking about mommy going to heaven; we're working on it still).  The oldest gets it.  I forget she's just 5.  Sometimes she acts like she's 25.  Watching God start plucking those heart strings is one of my favorite things.  She really gets it; at least from a head perspective.  I don't quite think she grasps the permanence of the reality that's coming, she has a child-like faith that Ash will be in heaven with Jesus and won't be sick any more.  To date, this is one of the hardest but most fruitful conversations I've ever had with her.  

(Is any of this fun? No.  What I'm about to say is not fun, but it's true and could quite possibly capture the entire journey in one idea... do I want my wife to die? no. do I wish I could swap spots? yes. do I wish we could eliminate cancer entirely? yes. is this journey too much to handle? no, even though it feels like it at times. is this journey worth it? yes.  is the eventuality of an earthly death easy to handle? not in the slightest. is the eventuality of an earthly death worth it? yes. ...follow me for a second.  if this entire journey has been a primer for our daughters to see Jesus and for their little souls to be redeemed by Him from watching their mother suffer well and trusting that, even in death, Jesus gives life... it is absolutely worth it and worth the loss of Ashley's life, of my life... if this is the catalyst God uses to open their little eyes and draw them in... hands down we'd go through this 100 times over; ok, back to the story)

We had a follow up MRI the following Monday and Praise God (again) there is no significant change from the scan we had a month prior.  While that is, indeed, great news... clinically she still wasn't sitting pretty.  There's a chance we had a perfect storm of infection/fatigue/poor nutrition/hydration that created that storm.  It could also be microscopic tumor growth that the MRI can't visualize at the moment.  The larger dose of steroid could've masked potential issues on the MRI.  There's a whole host of possibilities.  Needless to say, for the next couple of weeks we played defense and guarded time to rest and take it easy.  Almost to the point of walking on eggshells to maintain some sort of balance.

Fast forward to this past week, we had somewhat leveled off.  Ash was still having some focal seizures and fatigue hadn't really gotten better, but everything was fairly manageable.

Ash has a project in the works (more on this soon) and we did some work on it on 21JAN.  It was fairly intensive (for her), but necessary.  A quick reminder for us that she is basically walking a tightrope with her abilities.  Her thresholds are SO low when it comes to pushing past it from an energy perspective that we knocked her off-kilter again.  Thursday night, she had a SIGNIFICANT amount of seizures during the night.  She woke me up around 3am with seizures in her arms/legs.  They were the most I'd seen (short of her time immediately post-surgery in 2017).  So I gave her some rescue meds and loaded a dose of some of her seizure meds.  I was firing from the hip as I really didn't know what else to do (again, probably could've gone to the hospital here because 2 hours of seizures is TOO long...).  Eventually, she settled down around 5:45am and was able to go back to sleep.  I got the girls ready and off to school and woke her up when I got home for her morning meds.  All of this prompted another conversation with her NeuroOnc.  We adjusted meds again and are proceeding accordingly.

We've had a couple other doctors' appointments over the past couple of weeks and have tweaked some additional medications.  But, all in all, these past four weeks have been some of the toughest, most challenging yet.  It's provided for a few great conversations amongst our family.  It's given us a renewed perspective that our time here is not guaranteed. In fact, it's reignited the fact that even in suffering and struggle we can grow complacent.  I am the chief when it comes to complacency.  I get my routine and hold tightly.  It's clear that God is prying this mindset from my life.

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Quick Summary/Recap

• Christmas was spent in Texas; Upon the return, Ash tanked big time
• The situation was dire enough to have conversations with her doc about possibly moving to hospice (We definitely haven't pulled this trigger, but it was a pretty serious conversation at the time)
• After some significant steroid increases, she leveled off a bit
• Follow up MRI didn't show any significant change
• About a week ago, Ash worked on a pretty major project she's undertaken and the following couple of days she was in the weeds again
• Obviously we are walking a tightrope between her clinical performance and a downward spiral; continuing to find exactly where that line is, is the real challenge these days
• Through all of this, we've had some pretty heavy conversations with each other and our girls
• God has richly provided moments of grace and peace

(Seriously, if you want to dive deeper into any of these points... most everything we've gone through recently is spelled out in the 10 cent novella written above)

Where Do We Go From Here

If we could just nail down why there is such a vast discrepancy between imagery and clinical performance... (I know there's not really a way to do this, but it makes for some crazy unknowns ahead)  

With Ash having leveled off somewhat, are we back to "normal" or is this all cyclical?  Are we stair stepping our way down toward the finish line?  Are things stable and we've just pushed the boundaries lately?  So many questions, very few ways to answer them.  However, I know that at the end of the day... I don't have to know the answers; just trust the One who does.  Easy to write; difficult to practice.  I opened this whole post speaking to the changing of the seasons and how life seems to change at the drop of the hat.  Something our kids have been learning at church recently kept popping in to my mind the more I wrote today.  For all of the unknowns and all of the change, there is but one constant.  Jesus. 

Jesus Christ is the same yesterday and today and forever.

Hebrews 13:8

I've hesitated to share a ton of this as I don't want to come across as sounding the alarm unnecessarily, but the fact is, this has been our reality for the past month and a half.  My attention hasn't been on house chores, actual work or any of the other ancillary life tasks... it's been on my wife and kids.  I wrestle with trying to protect them but also exposing them to the reality of where we are.  Of course, not really knowing "where we are" makes that somewhat of an impossible task.

If I've had conversations with you about all of this recently, I'm sure all of this paints a different picture as this has more details and more parts of the story than what I had when we talked.  Hopefully (Lord willing) the severity of the situation has settled down somewhat; but, the fact remains: this disease is real, it is terminal, it progresses, and we've been on this train for a while... regardless of what the future days look like or answering when the "When's" will actually happen... we are still on this marathon of a journey.  Continuing to learn how to trust in God's Sovereignty is a lesson I don't think we'll ever stop learning this side of Heaven.

The Lord is my strength and my song;

he has become my salvation.

Psalm 118:14

It seems that the longer these posts are, the less I care about grammar and punctuation.  I'll go ahead an apologize to anyone who gets hung up on all of that.  I know it unraveled a bit there.  If you read the entire post, go get some water and stretch your legs :)  Thank you for continuing to encourage my bride.  The greater the struggle, the more, it seems, the Lord uses your encouragement to help gird up our household; so, Thanks!