Unto The Hills

So, this will be the second blog post I've written in less than 14 days.  I haven't done that in a while.  I wish I didn't have to do it now.  It usually means there is a lot happening or significant changes in Ash's health that need to be shared; unfortunately, this time is no different.  I'll pre-apologize for poor grammar and/or misspellings... I am likely not going to proof this before I post it since it's late and I want to push an update since it's been a few days..

Ashley had an MRI and a NeuroOnc appointment this past Friday.  It was such a long day for her.  We had an early morning start and wound up getting back home mid-afternoon.  For her, that's SUCH a long day; draining to the point where it took her well into Saturday to somewhat recover.  If you'll remember back to April, Ash had an MRI and there was a notable area of concern on her scan.  It wasn't quite pronounced enough for the radiologist to move off of calling her tumor stable so we didn't do anything (treatment wise) as a result.  We just resolved, at that time, to take a look at it again in two months and see what we had. Well, we certainly saw what she had on Friday.  It isn't good.

Her tumor is progressing and in my non-doctor opinion, it's not by an insignificant amount.  Historically, her tumor is been located in the L temporo-parietal area, really it involves much of the parietal region as well.  When we had the recurrence last year, it was on the fringes of the same area.  This time, however, we've got a non-enhanced region that's essentially moving toward the front of the brain, it's more interior this time and it running along the outside of the L ventricle.  Granted, you may not care about any of that, but the point is to bring to the attention that this progression is outside of the original footprint of the tumor.  

So what does this mean? Well, it means a few things.  Let's start with the elephant in the room: Ashley's health is failing.  It is not subtle.  It is apparent.  I see it more readily every day.  It is not fun.  In fact, it hurts to see my wife struggle.  To struggle with the frustration of not being able to remember how to do things at times; to re-tell or re-ask the same comment every 5-10 minutes; to lose the ability to understand/communicate for a brief period.  It's just not fun. At all.

Where this tumor is progressing is essentially in an area that can affect memory.  As an example it can affect memory as it relates to programmed tasks that we all take for granted.  Generally speaking, if I hand you a water bottle because you are thirsty, you know to grab the bottle, twist the top off, hold the rim of the water bottle up to your lips, turn it up and physically drink and when you're done you recap the water bottle and place it on the counter.  This exact example played itself out a few weeks ago when I handed Ash a water bottle and she just held it and stared at it, not knowing what to do next.  After I walked through it and helped her get it open and stepped through what I was doing, it still didn't register at the time.  However, thirty minutes later she was back to fully knowing what to do.  

No doubt, there are other aspects that this area of the brain affects, but if I had to pick one of the biggest things we are dealing with right now; it is, hands down, fatigue.  It is unreal.  Ashley's stamina hasn't been great for some time, but in the past week or so the fatigue level has been on a whole new level.  Lots of sleeping.  Lots of rest time.

I could go on and on about the current state of each aspect of her health, but the bottom line is that we can really notice a drop off.  She sees it, I see it, others see it... It is disheartening but not surprising.

Now, where do we go from here?  If you'll remember, last year we ran into a hurdle with treatment (at that time).  The chemo regimen that she was on was proving to be ineffective.  So we switched to an infusion chemo (that we've been doing and are continuing to do so).  It is not a cure, nor intended to be; but, it works in such a way that we are essentially attempting to choke out the possibility of feeding the tumor a blood supply and thereby restricting its ability to "be fed" and grow.  It's a sound stopgap, but not a long term solution. Because of the previous radiation treatments, this area is not really a candidate for additional radiation.  So the original chemo we started with and radiation are off the table.  As I mentioned earlier, we are continuing onward with the infusion every few weeks.  We are also adding a new chemo that we've not previously tried.  It's a fairly older chemo (as in it's been around for a while).  It functions in the same manner as the original chemo that proved ineffective over time, but there are instances where certain patients respond in a more favorable way to this composition (compared to the one we previously tried).  It's relatively easy to administer.  For Ashley, it's two pills every six weeks (Much better than the 15 pills over five days that the original chemo required). 

We actually started her first course this evening (about 2 hours ago).  Given Ash's predisposition to being nauseous and aversion to eating while on chemo, I see some rocky moments in the near future dealing with some of the side affects of this medication.  Other than that, we really don't have much else to attack this with.  So, we'll buckle down and give it everything we've got.

I specifically asked her doctor what the next few months would look like (knowing full well I am going to get asked that question 100 ways to Sunday).  Her response was genuine, grounding and compassionate: the next few months are going to be pretty tough.

I've got a whole host of thoughts/emotions/analysis/conjecture and I'm sure someday in the near future I'll put all of that together in another post, but for now, it's late and I need to wrap this up.  I, however, don't want to end on that last paragraph because it is super heavy and can choke you if you're not on guard.  So let me finish this post with a final thought.

I titled this post Unto The Hills for a specific reason.  Every day as I take my girls to and from their respective destinations for the day, we listen to the same playlist in the car and in the rotation is a "recently" remade version of Praise You In The Storm done by Natalie Grant.  I was listening to the radio one day and I heard that song come on and the lyrics, specifically the bridge, jumped out of the radio and stuck with me for a while:

I lift my eyes unto the hills

Where does my help come from?

My help comes from the Lord

The Maker of heaven and earth

You are my help

We are no doubt in a storm, have been for a few years.  There are moments when the winds grant some reprieve and the waters settle a bit, but we are always in the midst of the storm.  Barring some sort of God-given medical miracle (which is entirely possible, but not to be banked on), we've known the ending to this medical journey.  We've had time to process, we've had time to reflect, we've had time to grieve, we've had time to rest... but last Friday was another burdening weight.  Ash and I both feel it, we know the weight is only growing heavier.  It would be easy to be consumed with the fleeting moments of despair that come along with the news we received.  I'd be lying if I haven't felt those breath-extinguishing, demoralizing moments, but... err, BUT those words are literally resonating in my head (which at this moment I rely on to direct my heart): I lift my eyes unto the hills, where does my help come from? The next line is life giving and I mean that in the most literal way possible, My help comes from the Lord.  It's palpable, tangible.  There is absolutely no way out of this without the Lord.  There is nothing outside of His sovereignty.  He is ever-present in our time of need, and I'll tell you there has been a lot of need in our household lately which is good because that 'ever-present' is also true.  God, in his mercy, has upheld us.  In His grace, he has given us moments of deeper connection with Himself and with each other as husband and wife.  Take heart.  If this post has burdened you, use this as a springboard to approach the throne.  Intercede on our behalf, present your own requests, find your help in the Lord; take the yoke that Jesus offers... it is easy and the burden is light.

There will certainly be more updates in the near future.  For now though, it's nearly 1AM and I need to go to sleep...  Thank you for taking a few moments to read through our update.