An Anchored Foundation

This is one of those posts that I've not wanted to put together.  For whatever reason (probably because I like to be as prepared for moments like these) I have several posts waiting in the wings, and I really wanted to be able to grab one of those, numbly assemble, post, and not wrestle with much thought or deliberation; however, when I started working through the one that seemed to be the most relevant I took a step back and realized that a pre-written post really doesn't work as well as I thought it would.  

The following post was written today (this morning/afternoon/evening) and is genuinely filled with feelings, reactions, and emotions.  There is also some medical talk, but where I've been heavier in the science in some of my more recent posts; this will serve as more of a 'what's going on', 'where are we now' and 'how is everyone doing' type of a post.

If you are really just interested in the day we had yesterday and a brief description of what's going on- skip down to the TL;DR section toward the end of the post; otherwise, buckle up, grab some coffee and proceed to the small novella / personal therapy session written below.  

Note: I've peppered some pictures in there that will hopefully break up the heavy moments with a smile.  I wholly get the divergence between the weight of the words and the emotions of the pictures.

We can plan. We can prepare.  We can sympathize.  We can wonder.  We can 'be ready'.  We can think we know what's going to happen or how we will respond to certain situations.  The truth is, though, that responses by their very definition are a reaction to an event or situation.

All that being understood, there is SO much value in building a foundation to stand on when events or situations come along that could be potentially catastrophic.  Let me be explicitly clear here: the foundation I'm referring to is a rooted faith in the fact that Jesus is who He says He is.  By Him all things were created and in Him all things hold together.  Holding fast to Truth (Scripture) is the way to continually gird up that foundation.  Trusting that God works all things for HIS Glory and for the good of those who love Him.  This is (the only) foundation that won't crumble when you hit a storm... and storms are certainties.  They will inevitably come.  If you are blessed to be in a relatively peaceful season, I'd like to encourage you to praise God for that and to use that time to reinforce your foundation.  If you are in the midst of a storm, I'd also like to encourage you: You are seen and known.  I can, without reservation, tell you that I am empathetically right there with you.

Let's look back at the past few weeks.  I know I wrote an update at the beginning of the Christmas season.  It was the first update that I'd put out in four months.  Over those previous four months we'd seen a general, steady decline in performance.  As is typical of any situation we've encountered over the past four years, God provided ways for us to adapt and carry on.  

Well, since December 18th (date of the last post) to present, I can safely say that there are two distinctly different periods of Ashley's journey.  Up until Christmas day or so, things were pretty standard.  There has definitely been a noticeable (by both me and her mom [who has been staying with us since the early part of December] ) and somewhat sharp decline in Ashley's balance, stability, cognition and general function.  We have had a few falls over the past few months, but in the past couple of weeks... we have had a disproportionate amount of slips, trips and falls.  Some of these have been more significant than others, but the fact remains that activities that were previously 'safe' to do are now becoming more and more hazardous.  There is a significant increase in the assistance needed to do some tasks.  Memory and word finding are in similar situations.  Without running through every little point, we've definitely seen a much sharper decline than in weeks/months prior; the fact of the matter, is that her mom and I have had a couple of conversations noting the distinct change from the start of the Christmas break until now.

This, obviously, generated a fair amount of intrigue and speculation that something was going on.  The last set of scans a few months ago were relatively docile and didn't show much progression/difference from the previous set of scans.  Though clinically, we'd seen a change... the scans didn't provide much definitive insight.

Yesterday (January 7th, 2022), Ashley had an MRI and a visit with her oncologist.  [Internally, I started that day off with a heavier spirit than normal; not mentioning it much out loud, but knowing deep down that she isn't trending in a positive direction.  However, one of the most tangible lessons this journey has taught me is to not be so reactionary and to play the long game.  Heavy air or not, we still have to put one foot in front of the other and we'll handle what's in front of us when it gets here.] So, I loaded up the wheelchair and then Ashley.  We made it to the clinic around 7:45 for her scans.  After that was done and we went through lab work, we sat down with her doctor.  This is where things start to come in to focus.

Regarding her scans; nothing is evident on a mass effect scale, but it is clear we have some progression in the tumor.  We can see some movement toward the front, another area that is moving on to the right side of her brain (which is a relatively new development) and some additional progress vertically up.  Though there isn't a smoking gun to walk away with in terms of absolutes, it is evident that based on the scans and the clinical decline we have some significant issues developing.  The tumor growth is moving into areas that explain the decline in stability, headaches, speech issues, memory recall, cognition, etc.  

Without going any deeper into that for the sake of time, we had a very forthright conversation with her oncologist.  [Speaking of her oncologist: She is such a God-given blessing.  Her whole family is.  They have been some of the most encouraging people on this journey.  I cannot speak highly enough of how much we appreciate and are thankful for all of them!] Anyway, with her mom heading home next week, my return to the office on a hybrid format; there's some concern (on my part) for Ash's safety at the house.  Without a full realization / awareness of the hazards, Ash will sometimes try to do things (because she isn't the one to want to sit still all day) that might get her in a precarious situation or two.  I brought up the topic of maybe bringing in some home health to assist with some routine tasks.  Her doc said that could be a good idea and that we could go one of two ways; maybe home health or that we should also consult with hospice.  

Well, that wasn't really where I wanted to steer that conversation, but now the spade has been played.  Once hospice was mentioned, it prompted the question that I intentionally avoid asking most of the time.  [Sidebar: I know people want to ask this question all of the time... I get it, but there is something about it that turns me off.  I don't like it because it's basically a weather prediction.  It provides a scale of probability and allows for some generalized planning, but there is only One who knows the extent of our days; so at best, us asking, only gives us a prediction.  Yet somehow when we ask this question, it satisfies some internal desire to want to know what to do... but personally, this question creates unneeded anxiety.  Aside from putting our doctor in an uncomfortable/unfair position to try and answer the question; It creates some sort of 'self-made' control to a situation that we have absolutely no control over and I'm trying my best to leave things I can't control in a bucket on the side so I don't unnecessarily and futilely spend energy there] Yet, with my personal opinion pushed to the side, I asked the question anyway.  'With everything we see on the scan and given her clinical performance, what are we looking like in terms of time?  How much longer do we have?' -- ugh, even writing that generates frustration with myself; why did I do that? it's dumb.  I should've just left well enough alone and embraced more of the 'ignorance is bliss' mentality--  Well, the answer wasn't super surprising but it also created a thickness in the air that tangibly tightened my chest.  

"Months" ... ... ... what was, in reality, fluid conversation felt like a buffer song where the breaks between sentences hit a pause button in my heart.  It applied a timetable.  No specificity on the number of months, but the fact that there is a sense of finality around the corner put about 1000 things into perspective.  [Step back and think of things in terms of months; events that you normally think annually about don't make that list.  Without much more context, it starts to create this list of "Will we make it to..." in the back of my mind; Warning: I know I just said to step back and think this way... but this is a dangerous thought process and if you, too, are now heading down that path... I'm telling you to stop right now.  Kill that process.  Worry about today, because it's got enough trouble of its own.  Worry about tomorrow when it becomes today.]

Our conversation carried on and I asked a few more questions for my own wellbeing.  Of the questions, the most prominent was [because I like to identify trends and expectations (it's how I manage my emotions)] what the next 'months' would look like.  Would we see a gradual continued trend downward or are we walking up to a cliff and we then hit a rapid free fall/spiral? The answer points much more heavily to the latter.  This didn't generate calm in my heart; seeing how rapidly the past couple of weeks have been in terms of a noticeable drop off in her stability.  It's generate a bit of internal urgency and calamity. Alas, here we are.  We've got it all out in the open.

The doctor's visit began to wrap up with next steps.  For now, I asked for a near-term (1-month) follow up with another scan to give me some reference as to how fast things are deteriorating.  [The engineer in me is dangerously close to over analyzing and paralyzing on action.  Measure 42 times, start to cut and measure another 5 times just to make sure I'm executing correctly.] I staved off the home health / hospice conversation until that next visit.  I am fairly confident that her doctor agreed to this course of action out of respect for the request, but that if she had to draw a hard and fast line she would've pushed the hospice option harder.  However, we will move forward with the month follow up and at that time we'll make a determination for the next steps on that front.  Ash will continue on her infusions for the moment.  These are likely coming to a close as well, though.  Think of tumor progression as a battlefront.  When you fight a one front war, it's easier to be effective with a full-on assault or defense at that single point but as you expand battlefronts, you've got to spread the offense/defense out.  If you spread it too thin, you start to lose ground.  With the apparent progression of the tumor, we are starting to lose ground.

Ok, enough of the doctor's visit.  I think you get the picture of what's going on and where we're at.  Not good.  Not positive in terms of prognosis.  More near term than we want, but here we are.  

So, how's everyone doing?  

Understandably, Ash has had moments of grief.  Tearful moments, periods of confusion, lots of asking to explain it all again.  Each time, it settles a bit more.  There is obviously a lot to process and it comes in waves, but she knows what's going on.  I don't think the gravity has fully hit yet, or perhaps it's the grace of God providing the peace that only He can to help take some of the sting out of yesterday; but she's definitely a trooper.  She was in great spirits this morning before I left to come write this update.  I'm sure we will have many more moments of processing in the future, but for now she's managing this well.  Refer back to the opening paragraphs of this update.  I am continually in awe of the foundation that Ashley stands on.  Years and years of girding up that foundation are manifesting right in front of me.  God has been so gracious to draw her close and it's so encouraging to see.  There is literally no one else I know who has encouraged me as much as Ashley has through all of this journey; both as her husband and my sister in Christ.  

As I start to transition back to being the sole caretaker in the house (as my mother in law heads back to Texas on Monday), I think the heaviness hits a little more on my plate at the moment.  Lots of decisions coming up.  Lots of adjustments coming.  Lots of grief on the horizon.  Children to manage and protect. HOWEVER, something I said last night when Ash and I were talking after the rest of the house went to sleep... it's something I've been challenged with in recent months.  We have absolutely no control on cancer.  We have absolutely no control on the number days we've been given on this earth.  What we can control is how we respond to situations.  We choose to either look up or look in.  As often as I try to look in, the only way this works out well is to look up.  One of the greatest testimonies of God's grace and mercy is to display it through times of adversity.  The moments that impact the greatest are the ones that cause a head tilt because the reaction is not what is expected or anticipated.  Could I be angry? Yes.  Am I? Yes, at times.  Could I be afraid? Yes.  Am I? Yes, at times.  Do I throw hope away because things are not going the 'right way'? No.  Is there joy even as our household is up against death's door? Yes.  Does peace prevail? Yes.  Do we always feel that peace? No. Does that mean that it doesn't exist all the same? No, it's absolutely still there.  ...ok, this is starting to get confusing so I'm going to stop asking rhetorical questions, but you get the point. We don't control the situation, only our response.

Ashley and I talked last night about the fact that we could, understandably, withdraw and be quiet.  We could use these coming days and just 'get through' them as a family.  Is that the right course of action? Not for us.  We so desperately want this trial, for Ashley's life, to have the greatest impact on those around us for the Glory of God.  We want those who have surrounded us to be encouraged that God is so faithful to carry His children through the rough waters.  We don't want there to be confusion, God didn't cause this to happen, but He allows it to happen.  Why? Because it increases His glory.  

Personally, we want our response to this storm to be seen by our girls as a way to suffer well. Even as I lose my wife and they lose their mother... our response will still be, "God is good."  Honestly, this will be one of the most profound moments of our daughters' lives, that, to let it go by without using it to point to Jesus would be tragic and woefully negligent on our part.

As a kid of the 90s, the old 'Blessed Be the Name' campy worship song has popped in to my head since the appointment yesterday.  In my current Scripture reading plan, we are in Job and the origin verse for that song was in the reading a few days ago.  The Lord gives and the Lord takes away; even so, blessed be His name.  Also interesting to point out that in Job (Job 1:21)... the very next verse (v.22) speaks to the fact that even in those moments of grief that Job experienced in the loss of all he had; he did not sin and did not charge God with wrong doing.  May that be my response when this all comes to a head.

That's where we are.  A fresh wound, or really... an existing wound, reopened.  We will hold the course on meds/infusion, we will attempt to adapt to the daily hazards, and we will more earnestly set our sights above.  As we approach the month follow up, we will continue to pray for peace, clarity and opportunity.  We will also pray for our daughters.  I haven't talked about them much on here.  They are aware of what's going on; the eldest understands more fully the significance of what's happening.  Ultimately, they are going to get an opportunity to work through this sooner than I care for them to, but that's, again, not in my control.  Pray for them to be able to express themselves and that the Lord would draw them close and bring them comfort.

More to come as things unfold.  Thank you for spending some time to read up on how things are going.

TL;DR

So you've come to the Too Long; Didn't Read section for a brief rundown of where we are.  

Here are the highlights:

• Ashley's cancer is growing/spreading into several different areas of her brain
• Her stability is significantly declining; Falls are increasing; There is an overall failure in her ability to maintain a safe environment for longer periods of time as it relates to being mobile
• General cognition is declining
• We have a prognosis of 'months'
• We have a follow up appointment with another scan in a month
• There has been a start to the conversation of home health / hospice
• Ashley is handling this well; periods of grief, peace and strength

At the end of the day, we are still processing the day from yesterday but we know that God is sovereign.  He provides in all things.  Join us as we pray for clarity, peace and opportunities to continue to proclaim Jesus to those around us.  Pray for Ashley and our daughters; that they'd be able to process and deal with the news in constructive ways.

If you read the above section before the TL;DR part, I have read through it four full times now.  I walk away feeling a bit deflated.  Though, being open, deflated is a valid term and a legitimate feeling, but I what I don't want you to feel as you leave here is defeated.  We aren't.  Is this a tough road to navigate? Absolutely it is, and for all of the heavy words written above there are even more fruitful ones we cling to, ones that define us: God is Good.  He is Holy.  He is Worthy.  We are His.  

To God be His Glory.