Momentary Affliction

I am convinced that one of the toughest parts of terminal cancer is the last leg of the journey.  Grief, frustration, lamenting, the unknown, failing physical health, cognitive decline... NONE of these are strangers these days.  To that end, though, neither is grace, patience, gentleness, understanding and Hope.

There is a great deal of struggle to write part of this post in a way that doesn't come across as cold or without emotion.  To be honest though, that's the world I live in at the moment.  We'll call this a season of survival on my part; the colors of emotion are muted and an intentional push to handle the tasks set in front of me.  Internally, I feel like I've adopted the phrase, 'Work the Problem' as a daily credo for it seems that each day or set of days bring with it new sets of challenges.

I mentioned it earlier, the last leg of this journey is going to be remembered as the toughest of the entire process, at least on my end.  Until now, I've been able to justify each stage with the end goal of improving quality of life or quantity of life.  Under that lens, it's easy to compartmentalize the actual decline or loss of function as a trade off for salvaging one of those two areas (quantity or quality).  In this part of the journey, even though there is still some level of salvaging as much of those two areas as possible, the reality that this is the last leg diminishes the ease of containing the sadness/grief.  It makes each recognized decline more potent than the one before it.

As Ashley is certainly in a state of decline (on all fronts), I'm finding that I'm beginning to wrestle with the grief more often.  I'm not used to this, and it is not pleasant.  Understatement of the day, I realize that... but hear this: I have historically done well to hold captive those thoughts that could run rampant (see: paragraph 2). However, in recent days, seeing decline manifest itself more and more, it's definitely a struggle to hold the line on those thoughts (more of this later).  Maybe that's part of this whole journey though.  As Ashley is suffering well, my call is to grieve well and if you know me, you know this will likely be the biggest challenge of the entire journey. 

So let's level set on where Ashley's at --

Over the past few weeks, there has been a steeper decline in Ashley's physical performance.  We'll start with the temporary setback of dealing with a nasty cough and some head congestion.  After a couple of treatment iterations with hospice, we got her some meds and after a few long weeks of struggling with this cough, she is finally on the mend and things look to be returning to normal on that end.  However, with this cough being as bad as it was, it led us to move her from sleeping in the bed to the recliner in the living room. 

Now, on to the not so temporary change regarding her ability to use the right side of her body.  Her right arm and leg are all but lame.  She can still swing her right leg at the hip, but there is no significant ability to support her weight or manipulate her knee/ankle/foot.  This is obviously problematic when it comes to needing to shower or use the restroom or really be ambulatory in any significant capacity. So, Honey and I have been wheeling her to respective locations and are physically escorting her to do whatever task she needs to do.  Over the past 10 days, specifically, we've seen a significant drop in this function.  It's certainly provided for some interesting moments and some new challenges to navigate.

As far as cognitive function goes, well, there's no doubt that we are seeing the sharpest drop here.  While we've seen the physical decline happen over a longer period of time, and it was somewhat understood what/how that was going to occur (based on what we knew on her final scan)... the cognitive drop off has always been a bit of a 'wait and see' game as to how it would manifest.  We've hit a point where confusion is more prevalent than coherence.  Memory is all but shot (ex. she is given some medicine at time 'x' and then at time 'x+30min' she claims she hasn't had it and needs it).  Words are not readily available and often times it comes out as a word salad.  On a lighter note, she and I often smile at the fact that I've turned the deciphering of her words/movements into a bit of a game.  There are moments of elation when we finally figure out what she's trying to say.

[I am finding that the physical decline, while demanding from a caretaker perspective, is relatively easy compared to the cognitive decline.  I am ever growing in my respect for those who have made a career out of working with others who share similar difficulties.]

She's entered into a season of nesting/cleaning (and by cleaning, I mean pointing at things for me and Honey to move/pick up).  This is not uncommon for this stage, but we are definitely seeing it occur with greater frequency.

Mentally/Spiritually, I've had recent conversations with her that are hopeful and heartbreaking at the same time.  I see such conviction in her that Jesus is absolutely sustaining and drawing her close.  There is a confidence and assurance that He is near.  There are also moments when she's made mention of being ready for 'home'.  [Note: Those are the moments I mentioned earlier about grieving well, because, wow, when I hear her say that, there is a deep ache as my heart breaks, but a stillness knowing that, indeed, she is readying herself].  Hearing and seeing the confidence in Hope as the physical world begins to fade brings this scripture to mind.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day.  For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen.
2 Corinthians 4: 16-18a

I hope you find that to be a comfort.  I surely have in recent days.  Praise God that even in the midst of calamity and impending sorrow, His Word is a bedrock upon which we can draw strength.  Think about this for just a minute... scripture refers to this momentary affliction as light.  From my perspective, this affliction is massive.  For Ashley, I know she feels the same.  And yet, if scripture calls this affliction light but then counters that with an eternal weight of glory beyond all comparison; well, that's a mind-blowing concept.  Take all of this affliction that we are experiencing and it pales in comparison of what's to come.  That is oddly comforting.  It doesn't dismiss the affliction, but it certainly adjust the perspective of what we're going through.  This is what I love about The Word of God.  It's a connection to the Him, The Most High, and that 'grieving well' I mentioned earlier... well, it starts there.

Who knows what the next day(s)/week(s) look like... we know what's coming, but no idea when it'll get here.  What we do know is that we'll use every moment afforded to us to appreciate the memories we can make and to point to the One who created us all.

As a point of thank you, know that we really appreciate everyone reaching out over the past few weeks.  Whether it's bringing food, coming to visit, sending an email/text, calling on the phone... It's all very much appreciated and is absolutely serving as an encouragement during this time.  The burden is lighter on our shoulders because of you.

As things continue to unfold, I'll push another update. Thanks.