Update #74

Heard some pretty hard news at Roswell today.  

Scans show that there is now liver and lung involvement as well as new lesions in different bones.  After an MRI on Friday evening, I will meet with my doctor on Tuesday morning to finalize chemo infusion plans and then I will start chemo Wednesday.   It will most likely be a weekly chemo (on for 3 weeks and off for one).  It will most likely be an agent that causes me to be bald, although the final determination of that won't be made until later after my doctor, who was out sick today,  weighs in on the final plans. 

What makes all that even harder is that my bones are really bothering me.  So I will be starting prescription pain meds tonight (and perhaps during the day, depending on if they interfere with my ability to parent). 

Ugh. 

I'm being faced with doing two things I have never wanted to do - Rx pain meds and infusion chemo – and I'm adjusting to that reality.  I do okay until I think of my kiddos and then my eyes just overflow.  

This will be very hard on them. And I can't make it go away.  

I can parent them through this. 

I can point them to the only One who provides a real and lasting hope. 

I can surround them with people who will love them and who will willingly pick up the slack for me.  

But I can't tell them the things that I long to be able to tell them.  

I was flying home the other day and just struggling with the fact that my body was feeling worse and knowing that I was going to get my results back today.  I had moved some songs from my iCloud to my iPhone so I could listen to some music on the flight.  I made a mistake and moved an entire album by Casting Crowns (one that, unbeknownst to me,  Chad had just purchased during his marathon training) and this song came one.  It's called, "Just Be Held"  (https://www.youtube.com/watch?v=tIZitK6_IMQ).  It resonated so deeply with me, especially one line. And that one line has run through my head incessantly since that moment. 

"If your eyes are on are the storm, you wonder if I love you still. 

But if your eyes are on the Cross, you know I always have and I always will."

Oh my goodness, does that resonate. 

When I look at the storm, I wonder why He doesn't stop it for me when He has demonstrated a great ability to stop storms, part waters, restore life, heal broken bodies, bind up bleeding hearts, soothe troubled spirits. When I look at the storm, I do struggle with feelings of being unloved – or not loved enough – by Him.  

But, when I look at Christ and the Message of the Cross, those doubts fade away.  The Message of The Cross is all about a radically loving God who does the unimaginable so that we can be forever reconciled to God.  Who does the unimaginable for one reason only: because He loves us. 

The Storm.

The Cross.

As I've said before, this has been and continues to be a battle of where my eyes rest.

This new chapter I'll be embarking on doesn't change that. 

It's still the same battle.

The battle is not with cancer.

It's never been with cancer. 

Cancer is just the backdrop for the battle.

The real battle is for my eyes.

And, I can guarantee you that any battle you may be facing right now is first and foremost about your eyes too.

Do we keep our eyes on the Storm or do we keep our eyes on the Cross?

So, my friends, I thank you for the words of encouragement you've already sent my way and I thank you, in advance, for being willing to continue to walk out this journey with our family. I know it's tough.   May we all see Christ more clearly as we walk it out and may that infuse us all with a joy, peace and hope that are louder and deeper than the sounds of the storm.  And may you have plenty of Kleenex on hand if you see me and I cry like a baby! 

Love to you

K.

Update #73

Emilie and I are planning on going to Knoxville, TN on Wednesday for the final round of Destination Imagination's global competition.  It'll be four, jam-packed days of  competition and fun activities, followed by an early morning flight in order to be back in Buffalo on Sunday morning to cheer on Chad as he finishes his FIRST MARATHON!  

I would covet your prayers.

My body is not feeling very good. For the first time since my diagnosis, I'm honestly wondering if I'll be able to fully participate in the "non-physically strenuous" festivities we have planned. And it breaks my heart at the thought of this possibility – of what it all means and how it may affect Em.  

(Ugh.) 

My sweet girl needs her mom. 

As does my compassionate little boy.

And I've been boldly and tearfully reminding God of that fact.

And, at the same time I remind God of the great need my kids have for a mom, I am abundantly aware that Laura's three precious kiddos – Sarah, jack and Kate - desperately need their mama too.  

Yet she is not here on earth to live that out for them.

(Ugh again.)

I know all too well – as do many of you - that what we want to be promised may not be what God promises.

What we want to be off-limits, may not be placed off-limits.

What we want to be unacceptable, may not be so unacceptable.

What we want to be able to get a pass on, may not be passable. 

And it's hard to let go of our definitions of what is good, of what is right, of what is acceptable. It's hard to let go of our dreams and what we want to believe our rights are.  It's hard to let go of all that so that our hands are free to hold fast to the One who perfectly knows what He can and will do in impossible situations.

How He will bind up broken-hearts.

How He will empower victory out of the mire of fear, worry and sadness.

How He will forge faith that withstands the wind and waves of trials and temptations. 

How He will redeem each hurt so that we can speak His truth to others who need to hear the words, "I know what feels like" and "I know the One who can make it right."

I'm in the middle of doing just that. 

Once again.

In the middle of that painful, yet strangely peace-filling process, of letting go of what I think would be best.

In order to fully surrender to the One who knows what's best.

How I wish this surrendering thing was easier.

How I wish that the process of wrestling and surrendering were simple.

How I wish I could travel through this process once and never feel the need to do it again. 

But that's not how it is for me.

In fact, you may be reading this and be asking yourself, "Didn't she write something like this before?"

I probably did.  I've certainly felt this before. Countless times.

The process of surrender is messy and imperfect.

It's hard and complicated.

But I've also found it totally worth it.

Worth it because it always leads to a place of freedom and peace.

Surrendering to God doesn't mean that I'm being broken in pieces and beaten to a pulp and have no other options. That I cry, "Uncle" and He wins a battle. Rather, surrendering to God means that I willingly come to a place of trust and rest in Him.   

"Come to me, all you who are weary and burdened, 

and I will give you rest.

Take my yoke upon you and learn from me,

For I am gentle and humble in heart,

And you will find rest for your souls." 

- Matthew 11:28-29 (NIV) 

In the midst of the painful moments of this journey, I surrender to the truth that Christ speaks these words to me:

Come to Me, Kristie, when you're feeling pain and you imagine terrible things inside your body…

Come to Me, Kristie, when your mind runs ahead and you wonder what you'll hear in a couple of weeks when you get your scans back…

Come to Me, Kristie, when you start to think that you're not doing enough, not living out life well enough, not being a good enough mom, wife, daughter…

Come to Me, Kristie, when you are angry and frustrated and are tempted to think that I've abandoned you to walk this all by yourself…

…Come to Me, Kristie.  Bring all that junk to Me. Lay it before Me.  Surrender it to Me.  

And I will take all of it and, in exchange, I will give you rest. 

Oh yes, surrendering is hard.

But holding on to false securities and less-than hopes and incomplete dreams is exhausting.

Some of you know exactly what I'm talking about.  

You, too, are in the middle of a battle over where your eyes will focus and where your mind will stay.

Perhaps you need to Him say similar things to you. Perhaps you need to hear Him invite you to: 

Come to Me all you who are frantically grasping for, and holding out for, what you want to be true…a process that leaves you unsettled, angry, frustrated and dissatisfied….

Come to Me all you who are trying to follow an imaginary list of "if only I could act better, be better, not make mistakes, then…"

Come to Me all you who are chasing after distractions in order to avoid the real thing that shakes the core of your being, that scares you, hurts you, confuses you…

Come to Me all you who are attempting to control and fix and figure out…all you who are incessantly planning and planning again for things that may or may not ever happen…

…Come to Me. Trade all that junk for My promises and gifts.  Surrender your whole life to Me. 

For I am gentle and humble and I will give you rest.  

As we move forward in whatever Hills that rise before each of us,
how I pray that you and I both will be clear on where our hope lives. 

On where our joy is sourced. 

On where our confidence is rooted. 

On where our future is secure.

On where our rest is received.

Thanks again for walking this difficult road with Chad, the kids and me. 

We are forever grateful for you and the various ways you encourage and support us.

May hope always get the last word.

K.

Update #72

From this morning...

Headed to the dentist this morning for (most likely) a crown.

Followed up by a visit to Roswell for a blood draw, a jab in the belly, tumor marker results and a visit with my doctor.

Even though it involves a crown, it's not exactly a day that little girls dream about one day having, right? :)

I would love your prayers.

Thanks all. 

Back in touch later today….

K.

From this evening...

So I didn't get a crown.

In fact, I didn't have to have really any dental work done.  Perhaps down the road, but not today. 

What incredibly, surprisingly easy news.  

Totally deserving of a loud yippee! 

The news from Roswell was no where near as surprising, nor easy for that matter.

Tumor markers continue to climb and scans are definitely required.  

So on 6/2 I'll be getting scans and then on 6/11 I'll hear the results of those scans and treatment plans will be discussed.

Until then, I'm still on my "extreme-weight-gain-as-the-major-side-effect" drug.  (Please don't even think about putting a "yippee" to that one. Not today. Probably not ever.  Ugh.) 

The great news is that I feel pretty good.  Any hip pain is generally very manageable by Advil so I'm able to fully participate in life 

And that is something for which I am superbly thankful.

Although I generally don't like to only give medical updates, the truth is that I'm abdicating my parenting responsibilities right now in order to send off the quick update to you, so…. any longer update will have to with until later. I know; don't cry. :)

You guys are awesome. 

I truly count it one of my greatest privileges to be loved well by you.

Kristie

Update #71

We have a tape dispenser in our house.

I think it's the coolest thing.

Chad would strongly disagree with me.

This tape dispenser is a battery-powered, automatic tape dispenser. 

All you need to do is just pull on the very end of the tape and, voila, the tape dispenser pushes out the perfect amount of tape you need for most jobs.

Sounds fabulous, right?

It is. 

It's able to be used with one hand.

It sticks to the table top.

It makes a cool noise.

And it's brightly colored.

It's a nifty, fun invention according to me.

According to Chad, it's the most irritating object we have in our house.

[Don’t tell him, but I was laughing at him during the Christmas season when he had to use it to wrap gifts. It was super funny hearing him "talk" to the dispenser and complain that he couldn't figure out how to use it…that it takes a simple tasks of getting a piece of tape and turns it into a big production.]

So, despite Chad's complaints, we've had this tape dispenser sitting on our desk in our kitchen for a few years.

Just the other day, I noticed that one of the kids had added to it.

One of them took a pen to a piece of tape and wrote the word, "Pray" on it and stuck that piece of tape to the side of the dispenser.

Why?

I have no idea.

(Really, why do kids do half the things they do?  Especially boys.)

But here's what I know.

I love that they did.

I love that they knew enough about life and God and their need for Him that they illogically graffitti-ed our tape dispenser with one simple, yet life-changingly powerful  word, "Pray."

There's much about having a cancer diagnosis that royally stinks.  I mean ROYALLY.

But, if it means that our kids know that importance of God and Heaven and faith and love… 

But if that means that our kids get to see life through the eyes of eternity…

But if it means that Emilie and Daniel grow up from a young age knowing that the fullness of a life well-lived doesn't consist of having the best things, making the most money, landing the most prestigious job, taking the most exotic vacation, or even living the most days…

If it means that they are growing deep roots…

If it means those things, then I need to acknowledge that there is much, much, much good that comes from difficult things.

That great blessings can – and do – flow from hard things.

But blessed is the one who trusts in the Lord,

whose confidence is in him.

They will be like a tree planted by the water

that sends out its roots by the stream.

It does not fear when heat comes;

its leaves are always green.

It has no worries in a year of drought

and never fails to bear fruit.

 - Jeremiah 17:7-8

Love to you today,

Kristie

P.S. Headed to Roswell on Wednesday for blood work and doctor's visit.  Don't expect there to be any sort of treatment change at this visit given I've only been on this new medicine for 4 weeks and that's too early to tell its efficacy.  She will, however, probably order scans before my visit next month.  Blah. 

Update #70

What do you see when you look at this picture?

And, more importantly, why the heck might I might be posting it this morning? 

No, despite what it may look like, I'm not complaining about the fact that we still have lots and lots of snow.

In fact, I'm actually super grateful that we do still have all this white stuff on the ground.  

Before you roll your eyes, let me explain.

Last night, between 8:30 and 9 PM, a group of friends took it upon themselves to silently circle our house in prayer.

They braved the cold.  They put off putting their kids to bed. They sacrificed their relaxation time in their own homes.

To. Pray. For. Us.

As Chad and I tried to go through the regular bedtime routine with our kids, that was happening outside.

For me, I wrestled with the illogical mixture of feeling embarrassed, guilty, grateful, and joyous all at the same time. 

Because knowing that you are loved in such a sacrificial way is both humbling and awe-inspiring.

And knowing that your God is one who sometimes calls His people to do crazy, sacrificial stuff is both encouraging and challenging. 

But, for our kids…there was nothing but an overwhelming excitement.

They thought this was great and received this gift with nothing but a sense of, "Of course, this was exactly the thing that God would do for us!" 

It was so cool watching them sneak over to the windows and open the curtains or blinds just enough to peer through with one eye.

It was so encouraging to know that God made Himself more evident to them through this act of sacrificial service by our friends. 

And it was so funny to hear Daniel exclaim with building excitement: " Hey…that's Mr. Goble.  With Mrs. Goble!  With Ainsley!  And…wait…is that Gray peeing behind a tree?" 

So, why did I attach this picture of a snow-covered portion of our backyard?

Because that same snow that I've been complaining about and wishing would just go away…that same snow captured the evidence of what occurred here last night:

Footprints.

Mixed in with Mollie Moo's paw prints is the unmistakable path of footprints completely encircling our home.  

Tangible footprints that represent intangible, unseen prayers.

Tangible footprints that represent the radical love the Father has for His children.

Tangible footprints that represent the powerful realities of the unseen world around us. 

And, as soon as I opened the curtains and saw that this morning, I just couldn't wait to take a picture of it. 

To capture it as a testimony to, not just the love of great friends, but to the God who Sees, Who Knows, Who Listens and Who Acts. 

And, now that I have captured this picture, now…the snow may melt.

Until December.

Really, snow, you may melt now.

Bye, bye.

:)

Truly thankful. Truly humbled. Truly blessed.

Kristie

Update #69

In 7 days, we'll be in Florida with my family.

Ahhh…I can't wait.

In case anyone has a moment of feeling jealousy over that, let me help you get over that real quick:

What lies between now and 7 days from now is daily radiation at Roswell. 

I'm pretty confident that I just cured you of any ounce of jealously you may have had, right?

Yeah, I would think so! :)

So…the medical update from last week is that my doctor is willing to try one last "Hail Mary Pass" on non-infusion based treatment.  For the next two months, I'll be taking an older, slightly different hormone-based therapy.  In two months I'll be scanned again and, if the disease is still progressing, then it's infusion chemo for me.  In addition to these daily pills, today I started the first of 10 radiation treatments to my right hip in order to both reduce pain and attempt to slow localized progression of disease.  

Thankfully, the side effects of both these things (new therapy & radiation) are fairly inconsequential.  

Oh, wait. Forgot to mention that "excessive weight gain" is the most common side effect of the new drug I'm taking.

Not just weight gain, but excessive weight gain.  

Oh goodie.  Just what I've always wanted. 

So….how am I doing with all this?

I thought I was handling all this pretty well actually.  

That is, until yesterday, when I was by myself on my way home from Roswell.  

I was driving in the right-hand lane of I-190 and was behind a car that was driving 56 MPH.  And, sure enough, in the lane right next to me, there was an 18-wheeler driving 56 .1 MPH. 

So, there I was.  Stuck behind these ridiculously slow vehicles 

(Yes, I know, the speed limit is 55 MPH, so technically those vehicles…yeah, yeah, yeah…blah, blah, blah).  

About 15 seconds after realizing my unfortunate predicament, I (without warning, and totally surprising myself) started to scream my head off at the ridiculousness of their slowness.  

I mean, I was SCREAMING at those cars.  

My body hunched over my steering wheel, my fists pounding the seat, my eyes spilling over with tears, my face red.  My voice hoarse.

As I screamed, "Get. Out. Of. My. Way."  

Can you picture this craziness?

I was seriously off my rocker.

I was just so so MAD. 

I was just so mad at these stupid cars that were blocking my path.  

That were slowing me down. 

That were taking away my choice.

That were preventing me from going at the pace I want to go.

So mad.

Okay, so who has figured out that I wasn't really mad at those cars?

That, perhaps, my crazy anger wasn't really about those two law-abiding drivers? 

Yeah, it took me about 30 seconds to realize that too.

The truth is that cancer sucks and going to Roswell is difficult.

It can feel as if I'm behind obstacles that I cannot move.

It can feel as if I don't have the choices I want.

It can feel as if I can take a different path at the pace that I want to take it. 

And that's hard.

And it's hard working through that.

But God is good and He's got this. He's at work. He knows the path and He knows the pace.  And He's trustworthy.

So thankful for that.

So…to wrap this up…As I continue to work through this "slight anger problem", you may just want  to be on the look out for a very dirty gray Honda Odyssey min-van with a blond, pony-tailed driver and stay far, far away!  :)

Love to you all,

Kristie

End of Day Update...

Phew. That was a  LONG day…

Bottom line:  Treatment will be changing, but not sure yet what it will be.

My doctor is doing some research on some non-traditional treatment options to see if she'd recommend any of them more than she'd recommend infusion chemo. I'm also going to be meeting with Genetics (find out tomorrow when that appointment will be).  In addition, I'll be meeting with radiation oncology to see what the recommendation would be re: treating the the spot on my right hip.

How am I, you ask?

Actually okay.

Kinda strange, but Monday was much harder than today.  

My list of complaints was truly long on Monday.

But my airing of them – and then my follow-up visit to Hamburg Town Court and seeing the grander truths – truly did help put my feet back on solid ground.

I'm exhausted, but I'm okay.

No tears shed today.

AND…not even a lump in my throat.

Perhaps that will come later tonight as I lay my head on my pillow and have a moment to breathe and process all this…but, for now, I'm okay.

Thanks again for loving me well today.  You are a source of much needed, and much appreciated, encouragement.

K.