Update #65

Anyone want to guess what I heard today?

Ding. Ding. Ding.  

You got it: wait and see.

For at least a week, more likely for four weeks.

My tumor markers continue to be above normal (as they have been for many months), but are up slightly from last time.  My scans showed slight disease progression, but only in one area of my bones.  The rest of my scans showed that all other bone lesions are stable and that no other organs appear to be affected.  Because the new lesion on my bone is so small and because this is the first time my markers have gone up since switching to this treatment, the PA felt that it's too early to make a treatment change.  However, since my doctor is out of the office for a family emergency, she wants to consult with her via phone or with the other MD to make sure they agree.  Given how my Dr. has made decisions in the past, I think she will agree.  

If she does agree, I will continue on with this treatment and will go back again for blood work on January 8th.  

Phew.  A "yee-haw" and a "yikes" all in one.  

Mixed bag results are both so fabulous and so not-so-fabulous, aren't they?   

Thanks for your prayers.  How I am grateful for you.  For all the ways you stand in the gap for, and encourage, and love my family and me. You are so important to me.

If I'm not back in touch beforehand, have a wonderful Christmas…

Love to you,

Kristie

BTW - sounds like the "loudest vs. deepest desire" stuff has made an impact on more than just me.  I appreciate the many emails/posts/messages you've sent about it.  Good stuff. Thanks, Tim Keller! :)

Update #64

Guess where I get to go tomorrow? 

Yep; That Place. 

I've spent the better part of the past three months with my Tuesday morning bible study girls studying Mark and using Tim Keller's Jesus the King as a commentary.  It has been a fabulous study, perhaps my favorite.  And, although I could probably provide you with a month's worth of great new learnings from Scripture or insightful quotes from Keller's book, there is one that has been bouncing in my brain and my heart for the past few weeks that is fitting to share tonight.

Keller states, "Often what seem to be our deepest desires are really just our loudest desires."

[You may need to read that again and spend a second processing it. I know I did!]

Unfortunately – because it's bedtime in the Rush household and the kiddos need me to put them to bed – I can't give you the full context for this quote, other than to say Keller makes it after witnessing Christ's prayerful wrestling with, and then surrendering to, God the Father in the Garden of Gethsemane (Matthew 26, Mark 14, Luke 22), just hours before He is betrayed, arrested, put on trial and sentenced to death on a cross. 

What it means is this:  Often the thing that we think we most desire is really only that which is screaming the loudest in our minds, our bodies, our circumstances, our hearts.  

For me, the loudest desire is to be free and clear of cancer forever on earth. It's to be told my cancer is gone. It's to have a body that doesn't ache and hurt to the touch. It's being able to run and feel the wind on my skin and the sun on my face.  Those are honest and good desires. 

But those aren't my deepest desires. 

My deepest desire isn't to be free of cancer.  

It isn't to have a fully functioning body.

It isn't even to run.

My deepest desires are all about living fully as a daughter of The King - wherever He has placed me, and with whatever He has put before me, for whatever reasons He has.  My deepest desires are about being joyfully and peacefully obedient to Him, with a deep sense that He is always as He promises to be: loving, good, powerful, and present.  And with a deep knowing that He is at work here and now and that He will, one day, set all things right. 

Loudest versus deepest. 

It's a pretty big concept. 

And, I'm sure it's not just me who relates to it.

I bet you, too, have some pretty loud desires.  Things that are shouting at you and tempting you to believe that, with their satisfaction, you will be complete and whole.  A spouse who treasures you.  A child who makes better choices. A boss who esteems you.  A job that fits you.  A checkbook that doesn't look so meager.  A womb that isn't empty when you don't want it to be.   

Yet I bet, if asked, I bet you too would realize that those loudest desires may not really be your deepest ones.  I bet you'd realize that, while they're loud, they won't rescue you.  They're loud, but they won't fully satisfy you. They're loud, but they won't fill you with forever purpose and with overflowing hope and joy.  

Hmm…loudest vs. deepest.  

How I need to hold fast to this when I walk into Roswell tomorrow at 9 AM and hear the results of my scans.  

Because this road is not easy.

Feeling like this isn't easy.

Being there isn't easy.

And even remembering that my loudest desires aren't my deepest desires isn't easy. 

So I guess that's my request from you all on this beautifully snowy night in Buffalo, NY…I would love your prayers for Chad and me as we head to Roswell.  That the loudest desires for a cancer-free body would be realized (remember #6 prayer from a few months ago!), yet even more so, that we would fully trust and obey and go forward in joy, peace, and rest no matter what we hear.   

Thanks, friends.

Sleep well.

K.

"You will go out in joy and be led forth in peace…" Isaiah 55:12

Update #62

Home from Roswell.

Home from the dentist.

Guess where I cried?

Yep, at the dentist.

Although the news I heard at Roswell wasn't fabulous, all and all my current treatment plan doesn't change and I will still be taking daily meds.   The pain in my bone near my knee is probably growing bone metastases, but for now, doesn't warrant a change in anything I'm currently doing.  The swelling in my leg is most likely lymphedema due to radiation.  This means that I will be rocking a compression stocking, if not more intensive bandaging.   When I asked Chad if he would still love me if I had to wear compression hose, he immediately quipped, "Only if it can be lacy."   Funny, right?

So why the tears at the dentist?

Because my tooth isn't doing well and, because of complications from the meds I've been on, my only option may just be that it has to be pulled. 

And that was it; that was the straw the broke the proverbial camel's back.  So, despite my best efforts at sucking it up and trying not to cry, the tears started to flow.  Thankfully my dentist is a great guy and, although he wondered what the heck he said that opened the floodgates, he knows what's going on with me and therefore didn't think I was totally crazy! :)

Oh, almost forgot.  Want to know Chad's comment when I asked him if he would still love me if I had to wear a compression stocking and had missing molar?  

"Of course I will because that is totally sexy in West Virginia."  

He's a funny guy, right? 

You are more than welcome to crack your own jokes at my situation.

Laughter is FAR better than tears.

Just ask my dentist!

Love to you

Kristie

P.S.  To further humiliate myself...the video shows my response when I said that waiting for 45 minutes in the exam room made me feel like a caged tiger.  

Update #61

Ok.  So today is a bit different than I thought it would be.

I'm supposed to be in my office, glued to my laptop, putting together the materials for the women's retreat I'm leading this weekend at Chad's mom's church in Reading, PA. Let's just say that, while I am still working on those materials, I'm definitely not doing it in my office. 

Where am I, you ask? 

Sitting in an Immediate Care office about 3 miles from my house waiting for them to do an ultrasound on my leg to rule out a blood clot.  [Oh wait; that actually just changed.  Now I'm in a wheelchair being wheeled across a parking lot to go from Immediate Care to the radiology center.  Oh how fun.  I feel like I'm in my very own parade.]

SERIOUSLY?!? 

In some respects, I'm angry about this; I mean, really, who the heck wants to be sitting in an exam room for an hour waiting to see if you've got a major problem or not?  But as I'm stepping back from my anger and frustration, I can't help but admit that it's actually, in a way, a fitting place for me to be right now.  

You see, the topic of this weekend's retreat is "Living Authentically Unoffended by God."  What I hope to have the women explore with me is this: How can we live so that nothing God does or says (or doesn't do or say) offends us?   So that nothing we don't understand (or don't like or don't agree with) hinders us from moving forward following hard after Him?   How in the world – especially when we face difficult relationships or circumstances – can we authentically, honestly, transparently live  without letting those things cause us to begin to distrust or desert the One whom we ought to trust and obey?

Hmmm. Think about that for a second. 

Doesn't it, then, sound like sitting in an exam room, waiting to hear some potentially yucky news might just be exactly the place from which I should be typing out this message? 

Sounds like it'll keep me honest about what it means to Live Unoffended, doesn't it?

Like it'll keep me from not glossing over or minimizing the depths of some of the hard things that we face in life, right? 

But, at the same time this room highlights that fact that life can be hard, this room (or this wheelchair and, actually now, laying on this table just minutes away from getting ultrasound jelly smeared all over my leg) also gives me the privilege of testing out His promises.  The privilege of testing out the multitude of promises He makes all throughout Scripture that point to His faithfulness and His trustworthiness, to His grace, to His presence and to His hope.  The privilege of testing them out and being able to say this:  

Even in this, His promises still hold true. 

An exam room.  A wheelchair joyride across a parking lot.  A gurney with an ultrasound machine next to it.

Not exactly how I planned to prepare for this weekend's retreat. 

Yet, how come I know that a retreat without having lived through this day would have been so much less than the retreat we'll have after living this out?  A bit more harried and rushed in the planning of it for sure.  But a far richer weekend as a result, I have no doubt. 

Ah…just another day in the life Kristie…

:)

P.S.  Just found out I don't have a clot.  Cool.  Mom & Dad  – you can relax now and continue to enjoy your River Cruise! :)

Update #60

Don't worry; no hard story today.  Actually it's sort of a great one:  

Yesterday I went to my first fitness class in over 3 years.  

My friend Becky was gracious enough to let this out-of-shape girl try out her "we kick butt" TRX class.  While I won't go into the details of how the class is run, let's just say that…shocking…it makes you use your muscles.   And, based on how I feel today, apparently it makes you use all your muscles.  

Seriously.  

Like every single muscle.  

Every where. 

Can you say, "Whole body hurts?"   

But it's good pain.

It's the kind of pain that tells you you're in the process of strengthening and improving and refining. The kind of pain that, while PAINFUL, reminds you that your body was designed to be exercised and challenged and used. 

And, it's the kind of pain that causes my heart to leap for joy because I wasn't sure I'd ever be able to participate in such a class again.

Not to be offensive to anyone, but I truly thought Silver Sneakers was my only exercise class option left – and even that I thought would be a stretch.  [If you don't know Silver Sneakers, the name basically speaks for itself.]

So you can imagine how yesterday was just a gift to me.  

A surprising and glorious gift. 

And, after the class, as I hobbled to my car, a few tears started to well up in my eyes.  

Not at all tears of sadness, but tears of thankfulness. 

And I wanted you to know. 

Because too often I only update you when things are tough or unknown or heart-wrenching.  

Not today.   

Today - as my body screams with every step and with just about every movement – today is, for me, just a delightful day.  

Ah yes…sometimes it's easy to praise God and sometimes it's hard.  

Today is easy.  

[Well..that is…as long as I don't lift my arms or bend my knees…then it hurts like crazy!!:) ]

Yay! 

Kristie

Update #59

Easy news at Roswell!  Scans showed no disease progression.  Translated:  No yucky meds needed for (at least) the next 4 weeks! We are, however, going to try to up my current meds back to the original dosage to see if I can tolerate it without getting mouth sores.  The good news is that if I do start to get the sores,  I know I can cut my meds in half again and handle it just fine. The only side effect of these meds has been that I have some acne.  

Yes, that's right. Acne. 

"My name is Kristie Rush. I'm 41 years old and for the first time in my life I'm using acne cream."   

Does it bother me, you ask?  While, who in their right mind would like the North Star zit, the truth is that it doesn't bother me.  

IT.COULD.BE.SO.MUCH.WORSE.  

And, what's more, there is a hidden-blessing in all this: I have a new way to relate to my middle-school daughter and her friends as they navigate the woes of breakouts! (Hmmm…Is that being a bit too "Polyanna"?  Sorry. Still true!)  

So here's my story for you today. 

Went to bed with a little pit in my stomach.  Woke up this morning with a slightly larger pit in my stomach.  Drove into Roswell with that same darn pit.  As I drove, I thought to myself, "I wish today wasn't just about me needing encouragement from others."  

Don't get me wrong; I am so grateful for your encouragement. 

I don't know where I'd be without it. 

But, I will also tell you that abundant life – as least how I experience it – doesn't happen when I'm only on the receiving end.  

The paradoxical truth of God is that you are filled even more when you pour out.   

So, amidst the thoughts of "Oh crap; why do I have to do this today" and "What if the news is hard?" and "Oh Lord, please help me", the thought of, "Too bad today wasn't a day for pouring out" was running through my mind. 

Ha. Love it when God shows up and changes everything.

To preserve confidentiality, let me just say this.  God presents opportunities at times when we least expect Him to.  

Without us orchestrating anything.  

Without us having any idea that we've just been invited by Him to participate in His unfolding plans. 

By just asking someone a question of, "So, how did the move to the apartment go?", I got to participate in almost 30 minutes of listening and encouraging and speaking truth and offering hope to someone that I would consider almost a stranger. Certainly not a friend. Certainly not someone I ever expected to have a conversation like that with.  

In the midst of needing to be poured into (by you all!), I had the opportunity to pour out.

And it was joyful.

And life-giving.

And surprising.

And persepective-shifting. 

Yet I almost missed it.

I almost missed it because I tried to avoid this person in order to get out of Roswell faster today.

I got my "easy news" and I wanted to bail and "get on with my life."

Who knew that my life was supposed to be lived today a bit longer at Roswell? 

Who knew that, NOTHING else in my day – not even a trip to Starbucks for my celebratory Iced Peppermint Mocha – would be more important than that conversation.

Who knew that the need to pour out was right there before my eyes?

Not me.

But the One who reigns did.

And I got to experience being a part of Him revealing Himself to someone.

And it was good.

Easy news at Roswell was received by me.

Life-changing news at Roswell was given by me.

Now that's something to celebrate.

Love you and thankful for you,

K.

Update #58

It's been a whirlwind August. 

From my parents' cottage to Ocean City, NJ with Chad's family and then back to the cottage. Home for two days then off to Zambia for a week. Back home for a couple of days and then off to the cottage again.  And, as of this morning at 8:32 AM, off to school. 

Whew.

I wouldn't have changed a thing. 

And I won't be anything but grateful for the opportunities given me. 

You see, in the spring when I realized that my meds were probably no longer working, I thought the only medical options left involved the throwing up kind of chemo.  And therefore I thought that my family and I might have a tough summer. Back in April, when I risked looking ahead and thought about what might lie before me, I never imagined that August would look like the way that it actually ended up being.  

Perhaps a trip to Ocean City. 

Perhaps time at my parents' cottage.  

But never in a million years did I think it would also include a trip across the world to Zambia. 

Change that: A trip to Zambia feeling great, feeling healthy. 

Not throwing up.

And definitely not bald. 

I could tell you a million things about Zambia – and I probably will tell you more as the days go forward – but for today, I'm going to let one picture speak the proverbial 1000 words.

I took this picture as I sat outside reading my Bible and listening to worship music on a beautiful, cloudless and crisp (yes, crisp!) morning in Zambia. I didn't take it to have a cool picture. I took it because, as I was sitting there, I realized it depicted perfectly some of the hard-to-explain-with-words complexities of my life: 

The emotions of being both grateful to be fully alive, yet having a still so very tender and hurting and confused heart over the loss of Laura.  

The humility of knowing all my human frailties and imperfections, yet the joy of realizing that those don't disqualify me from participating God-directed things. Things that matter.

The tension between wanting to live a comfortable, easy, ho-hum life and  also wanting to be part of an unknown, often costly, adventure following after a loving, but not always "safe" God.

The illogical role of Scripture in my life…a source of great comfort, excitement and peace, yet at the exact same time, sometimes a source of mystery, frustration and challenge. 

I could probably say more, but then there goes the 1000 words to 1 picture ratio, right? :)  

So let me just say this: above all what this picture represents for me is the freedom to live.

Whether that's in Zambia or not. 

With Laura or not. 

On a beautiful, sunny morning or not. 

This picture reminds me that, through Christ, God has given me – and you – the opportunity to live fully.

Even when things are unknown.

Even when things are scary.

Even when things are hard.

I love that.

That's the stuff of hope. 

So, my friends…thanks for taking a few minutes out of your day to read this.  If you have a few minutes more, I'd love to ask for your prayers… Headed to Roswell tomorrow for scans and blood work.  I'll hear the results next Wednesday.  

Pray that I'll be brave and grateful. 

Thanks!

K. 

Update #57

Just a quick one today…

#1  Radiation is OVER!  Super thankful that I was able to get a daily appointment time at 8:10 AM so the impact to my kiddos was minimal.  Super thankful that the side effects were minimal.  Super thankful that those lovely green accessories on my legs can now be removed.  Not super thankful that my quad and hamstring muscles didn't particularly like being radiated and they feel as if they've been fairly severely pulled.  They say that it should get better "over time", but I'm actually in more pain now than I was before.  Nothing two advil can't take care of, tho, so we're still good.   Ahh…the joys of treatment. :)

#2  Zambia is ON!  Long story, but I made a decision to go to Zambia. It's actually a cool story, but not one that fits into "this is a quick update" category. Suffice it say, it's not a "bucket-list" decision (I don't believe in bucket lists) nor is it a stick-your-head-in-the-sand-and-pretend-there-aren't-risks decision; rather, it's an obedience-to-God's-leading decision.  So…I, and 4 others from my church, will be gone from 8/20-8/27.  Other than the long travel times (JFK – Johannesburg, SA is 15 1/2 hours!), there's nothing about this trip that causes me any worry or concern or even the slightest furrowed brow feeling.  On the flip side, I also don't have any expectations as to what I will experience or what God has for me to be a part of when I'm there.  My biggest prayer is that this time away matters for eternity. Oh, and that I don't get yellow fever. That's also a prayer.  Because getting yellow fever or meningitis or malaria or typhoid, well…that would just stink.  :)

#3  Reprieve from Roswell for the rest of the summer.  Because of being away, I actually have a 5 week break from Roswell!  I don't return until 9/6 for scans and the 9/11 for my appointment with my oncologist to see what might be going on inside my body.  This break feels glorious.  And I will take it with open hands and a grateful heart. :)

[And, yes, if you've been counting…that's three smily faces in one email.  Can you tell that I'm thrilled to be done with Roswell for a little bit?] 

Enjoy the rest of your summer, my friends!

Love,

Kristie 

Update #56

Quick one today. 

Three things:

One Big Praise! Chad spoke truth this weekend at church. It was an honor to listen to him. Even more so because I have seen first-hand - and time and time again - that he actually lives out that which he shared.  In this mess of cancer, Chad is patient and worshipful. He perseveres & battles to keep his feet firmly planted in faith.  He chooses to daily trust in the unchanging character of God.  What a blessed girl I am to have him!  If you have about 30 minutes and want to watch a potentially tear-jerking video from me (a letter to our kids that I read aloud), listen to Chad's talk, and hear me bumble thru an ending, you can go to www.wchamburg.org.  

One Ugh!  I am starting radiation to my left femur on Wednesday. I will go every day (M-F) for two weeks.  The side effects are expected to be minimal. However, the decision has been difficult to make because my pain levels, while slightly increasing, are still VERY low and, although the actual treatment only takes minutes, the entire process of driving in/out, parking, etc. will take about 2 hours out of each day…time away from my kiddos.  

One Help! I have been presented with an opportunity to go on a missions trip to Zambia.  There is some significant concern by my doctor that it is an unwise move because of the vaccinations that I must get in order to go. I am torn about what to do.  Although I will be getting only inactive (non-live) vaccines, there is risk that my cancer meds will interfere with the efficacy of the vaccines. I need to make my decision by tomorrow.  Yikes!  If I do go, it will be from about 8/21 – 8/28.   I'd love your prayers for wisdom on this…

Thanks, friends!

K.

Update #55

I just reconnected on Facebook with a college friend. She reached out to me after finding a link to the blog where all these updates are also posted. In her message she said that she had a sleepless night and read through almost all of the updates from start to finish. 

At first I was flattered that she would invest her time doing that.  

But quickly I realized that perhaps she read them because she was desperately trying to fall asleep and that darn sheep-counting exercise just wasn't working as well as reading updates #1-#54! 

Funny, right? 

In all honesty – and I'm trying to say this as accurately as possible so that it isn't misinterpreted - while as much as I truly appreciate anyone spending time reading these updates in one sitting, there is something about that that is a bit troubling to me.

Reading updates #1-#54 takes about an hour or two. 

Living them out has taken over 3 years.

And there's something incredibly real that is lost by looking back and reading update #54 just minutes after reading update #53 when, in actuality, it took 27 days of moment-by-moment living in order for Update #54  to be written.  There's something lost by being able to start from June 24, 2013 and read backward to May 6, 2010.  There's something lost about just clicking on "Next Page" and waiting 0.5 seconds for the page to load in order to find out what happens.  

You already know how the story has gone.

You already know the outcome. 

You don't have to wait and wonder and wait and wonder. And wait and wonder.

You don't have to live in between the updates.

And that's the total opposite of what actually occurred in order for an update to be written:

I had to live in order for there to be anything to write about in an update.

In between the updates is what living is all about. Is what faith is all about. 

About waking up each morning and choosing to trust Him.

About ending a day realizing you didn't end up trusting Him very well that day.

About wrestling with Him over what might happen in the coming days and weeks and months and years.  

About spending time in His Word, remembering His promises and His character and the blessings He's already abundantly provided.

About surrendering all the "what-if" questions to the One who has proven Himself trustworthy. 

Absolutely; there is much gained by reading someone's faith story journal from back to front or from front to back in one sitting.

But there is some that is lost. 

And that bothers me a little.  

Because I don't want anyone ever thinking, for one second, that I am just a compilation of my updates, a series of snapshots, a set of pretty postcards. 

Because I'm not. 

I'm a girl who has to decide – each morning, each evening, each moment - if Christ is who He said He is, and can do what He promises, and can offer hope that lasts and joy that permeates and peace that settles and calms.  

And so do you. 

While you might not have to write updates, you, like me, still have to make daily choices on how you're going to live. About what you're going to believe. About what life is all about. About what you do when you fail. About where your eyes and heart and mind rest when things are unknown and difficult and not how you'd love for them to be.

That's the real stuff of living.

And on Saturday night and on Sunday morning (3 times!), Chad and I get the opportunity to share more about this.  

About encountering God in the midst of the real stuff of living, even when that real stuff of living is hard.  

How it's messy and beautiful and frustrating and comforting.   

Ultimately, how we can still experience the mercy and compassion of God.

If you've got nothing to do – or if you have a million things to do, but sense that this may be something that's important for you to hear – you're welcome to come.

Once again, I end with this: I appreciate you more than you know.  

K.

Wesleyan Church of Hamburg

4999 McKinley Parkway

Hamburg, NY 14075

Service Times

Saturday night at 6:30 

Sunday at 9:15 (smaller, traditional service in the Chapel), 

Sunday at 9:30 and 11 (in the big worship center)

(Children's Sunday School Offered at each service)
Connect with me if you have questions

Update #54

Just a quick update…

It was a ROUGH week last week…from randomly occurring (and excruciating may I add!) tooth pain and a bad reaction to pain meds (think "toss-your-cookies repeatedly"), to mouth sores that have caused me to have to stop the new cancer meds (hopefully, temporarily), to a bad reaction to the medicine that was supposed to help my mouth sores (can you say bumpy face and neck?).  

Hmm…not exactly the "Welcome to Summer Vacation" I had envisioned for my family! 

Ugh. 

But, thankfully, today is a much easier day.  

Tooth pain totally gone.  

Mouth sores are almost resolved.  

Bumpy skin from the allergic reaction is smoothing out.  

Leg pain gone after taking 2 Advil. 

AND I'm in Pittsburgh with my kiddos visiting my sister's church because they do an incredible, 800+ kid Vacation Bible School for the week!  They're all at church and I get 3 hours to myself in a house that doesn't belong to me (think: no housework and no guilt).  

So…I decided I'd take 3 minutes and let you know of all that craziness and ask for your continued prayers that I would be able to be tolerate the cancer meds once I start back up again (probably on a reduced dosage) this week and that the meds would be effective.  My next appointment is Tuesday (July 2). Blood work will be done to show tumor marker levels and I'll make my decision regarding doing radiation to my leg.  No surgery needed to put in a rod into my femur, by the way.  Phew. 

Also, I wanted you to know that our church has asked Chad and me to speak again this summer.  We will be speaking at all four services during the weekend of July 20 and 21. If you'd like to come and hear us speak, we'd love for you to join us: 

Wesleyan Church of Hamburg

4999 McKinley Parkway

Hamburg, NY 14075

Service Times

Saturday night at 6:30 

Sunday at 9:15 (smaller, traditional service in the Chapel), 

Sunday at 9:30 and 11 (in the big worship center)

Update #53

Just a quick one now…perhaps I'll write more later…

Based on scans and slightly increased tumor markers, I will be changing treatment to an endocrine based therapy.  This therapy is a newly approved therapy for Breast Cancer and one that has side effects that are substantially easier than traditional chemotherapy.   I will start taking these daily pills in the next couple of days.   One of the listed side effects is "a change in personality."  I openly laughed out loud at that one.  That's funny.  How in the world do they measure that?  (Let's hope I don't have to come back in a few weeks and tell you that I know why that's listed as a side effect. Thank goodness I'm not naturally wired to be a hypochondriac…can you imagine!?! :)

So, although I'm not starting a hard chemo regiment (for which I am beyond-words grateful), I do have a few prayer requests that'd I'd love for you to be praying….

(1) There MAY be cancer now in my lung. If so, it's small (and no symptoms that I can tell).

(2) I MAY need to have radiation done to my left femur as it's been causing me some pain.  I will consult with a Radiation Oncologist in the coming days.

(3) I MAY need to have surgery to put a rod in my femur to stabilize it. I will be meeting with a orthopedic who specializes in bone-based cancer in the coming days.

(4) Although there are several not-so-nice side effects of this new endocrine therapy, a more common one – and one that could preclude me from continuing with this therapy – is debilitating mouth sores.  I don't want those.  Nor really do I want ANY negative side effects!! :)

(5) I would really like for this treatment to work wonderfully.

(6) I would really, really, really like for cancer to be fully, forever and ever gone from my healthy body.  Now, that's a risky, bold prayer.  Anyone signing up for that one? :)  I know that I have been, and will continue to,asking for that and have been/will continue to do my best to trust His answer and His timing. 

Thanks, friends.

You know, not every time I've gone into Roswell, have I walked in and out emotionally in a good place. Today – despite the seemingly difficulty of the news that I heard – I did.  I'm super thankful for that. 

I hope no matter what lies before you, no matter what your feet are walking thru, no matter what your eyes see as they glance around you, no matter what your ears can't help but hear…in the midst of all that, I hope you have a deep sense of His hands holding you.   It's not always an easy place, but it's a good one. 

Update #52 - With a Twist

It's been three years since my re-diagnosis. 

And it's been three years of you having to read update after update after update as to what's going on in my life. 

In honor of your tremendous commitment, I've decided to give you a break from reading yet another typical update and have determined that you all must now have the opportunity to experience my fantabulous poetry skills. In fact, I'm sure that, once you read this poem, you will decide that Shel Silverstein and Dr. Seuss have nothing on me. 

Roswell tomorrow.

Oh how fun.

Roswell tomorrow.

Hmm…what has this cancer done?

Roswell tomorrow.

For scans, scans, scans.

Roswell tomorrow

I may need ya, but I ain't one of your fans. 

Any applause? 

No? 

What's that, you say? 

Perhaps I should stick to just plain 'ole writing?

Okay.

Be back in touch next week Wednesday after I hear the results. 

Until then, please know that I will be forever thankful that you have walked these years with my family and me.   You have loved us well.

Love to you,

K. 

Update #51

Super late in posting...sorry...this was sent out on May 1, 2013

[Oops. I almost forgot to lead with the punch line from today’s visit at Roswell: scans scheduled for 5/22 with a follow-up appointment on 5/29 to hear the results.  Also heard that there may be another non-chemo based option that is available to me if a change in treatment is needed based on the scan results. All in all, much easier news than what I could have heard and there’s a relief in that for me.  But rather than talk more about that, what I really wanted you to hear was this…]

Two nights ago, I popped into Daniel’s room for the still popular (thank goodness!) “tuck-me-into-bed” time.  I found him like I often do: snuggled under his covers with a stuffed animal held tightly in his hand. However, on this night, his head was buried in his pillow and he was crying.  

“What’s wrong, buddy?”

Sniffle, sniffle, cry, cry. “I don’t like being a kid.”

“Why’s that, D?”

“Because I don’t have any control.”

After a little cajoling, I found out that Daniel’s tears were due to his daddy saying “No” to his request to have a treat before bed.

You see, Daniel wanted a treat. Bad.

He knew what treat he wanted.

He knew where it was located.

He could imagine how great it would taste, how it would make his belly feel.

How good it would be to have.

He also knew how easy it would be for his dad to say yes to his request and he didn’t really understand…he certainly wasn’t okay with…why his dad was saying no.

Begging and pleading didn’t work to change his dad’s mind.

Arguments and logic didn’t make a dent.

Even the tears that fell from his eyes didn’t have the effect that he wanted them to have.

His dad held firm to his answer, “Not now.”

And when Daniel came to the end of his ability to bargain, his ability to try to persuade…his little 10-year old self got frustrated.  And, for one night two days ago, he determined that the only solution must be to stop being the kid.  To trade his position for the position of his parent.  It had to be better than just being the kid, right?  He’d do it better, right?

Oh Daniel.

How I know how you feel.

I’m sometimes that kid too.  

I’m that kid who has asked and has asked and has asked again and again her Dad in Heaven if she could have something. If He’d open the pantry door and allow her to get that sweet treat of easy, easy news. News that she sometimes thinks would just make everything all better.

I’m that kid who has cried in her pillow as she’s struggled with not understanding this. Not understanding His “not yet” answer.  Who doesn’t like it.  Who wants to know why.  

I’m that kid who wants her tears, her bargaining, her honest heart-gushings to change His “not yet” to a “Yes!” response.  

And, I’m also that kid who, when she doesn’t get the answer she wants, is tempted to believe that life would be so much better if she were in control. If she made those decisions. If she had unhindered access to the pantry of treats and could grab what she wants when she wants it.

Oh yes, Daniel, how I understand.

The seeming-withholding of a sweet blessing is difficult whether you’re 10 or 40.

And as I spoke words of truth to Daniel that night - truths about the great and many benefits of being the child of his father - Daniel’s sobs subsided. The tears stopped falling.  His crumpled, distraught face calmed. And soon a smile began to appear on his face.

Was it the exact words I spoke that made the difference?

Oh, I’m sure they had an impact.

But my guess is that the exact words weren’t really the game-changer for him.

I think the real game changer was that Daniel was reminded that his dad loves him.

I learned afresh these past 24 hours that it's the game-changer for me too. When my heart is hurting and I’m frustrated, all the truth contained in His word doesn’t soothe, doesn't mend, doesn't infuse joy unless I hear and trust that those words are spoken by the One who loves me.    Knowing that the One who hears and responds to my deepest needs and my most desperate pleas...knowing that He loves me...puts my list of worries, complaints, and frustrations in a surrendered, restful position.  

And that's a far better place to be.

Just ask Daniel.  

Thanks for your prayers and encouragement today. I will say it again and again...you all rock.

K.

Update #49 & #50

Forgot to post Update #49 yesterday
Had my blood draw this morning. Just got the results: Tumor markers up above normal. This does not surprise me - although please don't think that that means I didn't cry a bit when hearing my suspicions confirmed - as my left leg has been causing me some discomfort. Meet with the doctor tomorrow morning at 8:45. I'll keep you posted.


Update #50 from today
Wait and See.
No treatment plan change.
Follow-up in 4 weeks.

After you read those words, I bet you're wondering if I, by accident, sent you last month's update instead of this month's. Because it sounds sort of familiar, right? Are you wondering if my doctor isn't doing her job? Are you wondering if I'm sticking my head in the sand? Or, are you smiling because you're thankful that Cue-Ball Kristie (you know, the bald version of this blonde self) doesn't have to been seen quite yet?

I hope by now, you understand that a journey with a cancer diagnosis - at least a Stage 4 cancer diagnosis - is neither a straight-line or a clear 100%-we-absolutely-know kind of a thing. It's not. It's a combination of cold hard researched science and a plethora of still-remaining research questions. It's a combination of qualitative assessments and quantitative tests, of the voice of the patient and the expertise of the doctor, of a drug's past efficacy and a unique person's internal chemistry.

All those things combine and paint a picture that isn't as clear as any of us would like it to be. It's kind of like someone who has taken off her coke-bottle thick glasses from 1998 (yes, some of you are smiling at that because you've seen me wearing such things!) and is trying to paint a detailed color by number picture...while there are some guidelines to follow, those guidelines are fuzzy at best and completing the picture is definitely not going to be within the lines.

(Ha! Not a bad analogy. Just came up with that. Such a sharp cookie I can be, eh?)

And that just describes all the medical combinations.

For those of us who believe in a God who is in and above and outside and bigger than all those things, it's even more complicated.

I would argue that it's infinitely better, but it's also definitely more complicated too.

Why's it more complicated? Well, said simply, because God can remove the only thing that the medical community treats as a "known" in this thing - my death from this disease.
He can remove that "known" (death), spin it's on it's ear, and make it an irrelevant, totally-not-gonna-happen, don't-trouble-your-mind-one-second-about-it thing.

Death from cancer?
Or is it a never-gonna-fully-explain-it rescue from cancer?

Hmm…guess what?
It's a wait and see.

So today's plan of wait and see (which, by the way, doesn't go against my doctor nor is my doctor going against me in that recommendation) is actually totally okay by me.

It's not that I have incompetent doctor.
It's not that I'm burying my head in the sand.
It's not that I'm being stupid about not wanting to be bald (although, seriously, I just got my hair done and according to friend, it looks marvelous!)


It's about resting in a place of recognition that I cannot determine the outcome of this. In a place of trusting in the One who can and does. A place of surrendering my desire to "know how this will go" so that I can embrace His goodness and His blessings and His grace and His presence today.

So the plan?
It's no different than it has been really:
Wait on God.
And see His face while I wait.


Oh, and to go to the grocery store.
We really need some food in this house.
Love to you all. Thanks for your prayers. They matter.
K.

Update #48

And…..
It's a shocker….
Ready for it?

"Wait and see."

Actually, the news was a bit harder than just a neutral wait and see.

The reality is that - while the CT shows no change and my tumor markers are back in the normal range - one test, the bone scan, shows that there is probably mild disease progression in a few places on certain bones in my body. To help shed more light on the bone scan's results, I just had today an x-ray of my left femur and both hips to get a better look. (I'll hear the results of that tomorrow). With that mixed bag of results, the underlying question still remains: Is this probable progression bad enough to switch treatment?

My doctor (who I trust and appreciate very much) wants to wait 1-2 more months - unless my symptoms in my leg become substantially worse - before she recommends any treatment changes. The reason? Slow disease progression is still considered, medically anyway, a relatively acceptable outcome when you have a Stage IV diagnosis - especially when the treatment plan you're on has mild side effects.

While it may be medically acceptable, it's really not all that acceptable to me. Although I'm not crushed by the news I heard today - thankfully, in no way shape or form am I even close to crushed by it - I didn't like hearing what I heard. No one in their right mind would just smile and laugh at hearing the words "disease progression" strung together. Right? I'm not just a strange one in that regard, right?

Right.

Yet I also know that I, by far, did not receive the hardest news in that place today. Guaranteed. So while I don't offer a yippee over today's news, I will choose to remember that, and instead, be thankful for the easy things about my day today.

I'll choose to be thankful that I don't have to change anything medically right now.
I'll choose to be thankful for Chad rubbing my back and giving me strong, comforting hugs.
I'll choose to be thankful that the pains that I am experiencing are intermittent and most of the time don't even require a tiny little Advil to combat them,
I'll choose to see the many texts, emails, posts on FB as a tangible expression of God's love

Oh yes…there's lots to be in prayer over in this thing, but there's also lots to be thankful for too.

Above all, today was yet another can't-ignore-it reminder that my medical team doesn't have the final voice in my life. While I appreciate them - and the science under-girding their skills - they don't have the final say as to how I live my life. Why I live it the way I do. Even what's going to happen in it. That falls squarely on God's shoulders.

Thankfully, He's fully trustworthy for that job.
May I remember that and hold fast to it.
　
One more thing before I go TAKE A NAP (not words often spoken by me!)... I wanted to pass along something I read today as I sat in the waiting room. I totally appreciated both the challenge and the encouragement of it. Matthew Henry, in his Commentary on the Whole Bible, made a passing comment as he was offering some insight on a particular passage in Scripture. Here's what he said, "If we do not know truth, we cannot be ruled by it."

I won't say anything more about it.
But, do me a favor, and spend a minute thinking about it.
May it both challenge and encourage you too.

Thanks for your prayers and your encouragement.
With Love,
The Blonde-Ponytail-Sporting-Kristie
:)

Update #47

Wrote this around 2 PM today. Didn't get a chance to send it out until now. I'm, thankfully, home!
______________________________________
Sitting at Roswell. Waiting for my scans. Again.

Not a place that I am unfamiliar with.
But not a place that makes it easy for me to rejoice.

The sad part is that I'm not alone.

In the last 15 minutes, there have been 30 other people, couples, families who have walked by my little, out-of-the-way place where I've set up shop as I wait. Whoops. Make that 31.

Time to be honest. Do you know what question I have asked myself over and over again during the past almost three years when I'm here?

Do I care?
Do I care that there are hundreds and hundreds of other patients here?
Or do I just care that I'm here?

Perhaps my answer to this question isn't completely black and white, but I do have a definitive answer to that question.

Chad and I have taken a very nice Christian worship song that has a line it is that says, "It's all about you, Jesus. And all this is for you, Jesus" and we - when we think the other person is being a bit selfish or egocentric - will sarcastically sing it to the other one but replace Jesus' name with one of our names. In essence what we're laughingly reminding each other of is that there is One who deserves to be the center of the world, but neither one of us is Him.

So, because Chad's off getting a quick bite to eat in the cafeteria, I guess I'm stuck singing that sarcastic version of that lyric to myself. Because, truth be told, that's how I feel right now.

I could lie to you and say that I don't care as much about myself as the others' who are in this place. I could pretend that I've never thought about it before or that it's a silly question. Or I could even lie to you and say that, from now on, I will care about others more than myself; after all, that's biblical. But since I have committed to walk this journey out with you as authentically as possible, those are not viable options.

The truth is that I'm in process on this one. And, while I wish my honest answer isn't what it is, the reality is that's where I am: I care very much what happens to me and sometimes that makes me focus only on me and what this means for my husband, my kids, my dog even :)

So why am I sitting here with a smile on my face after coming to this "you're not as good as you thought you were" realization?

Because, as much as I know that God intends for me to see things a bit differently than I see them today, I am so much more in awe of Christ.
Of His selflessness.
Of His countless examples of choosing to prioritize others.
Of His ability to change His own difficult on earth situation at any time by calling "legions of angels" to release Him and, yet, choosing not to.

Why would He do that?
Why on earth would He do all that when He could have easily and simply and quickly and painlessly have chosen not to?

(Here comes the reason for my smile…)

So that you and I could experience a forgiveness, a restoration and a freedom that is beyond words. Beyond what we deserve.

So that you and I could express our weaknesses and failures and questions and doubts and know that we will not be tossed aside as useless to Him.

So that you and I could be in a place - while not unfamiliar, but difficult - and know that we can experience a joy and a peace that defies the boundaries of our walls.

So that you and I can know that hard circumstances don't deny a good God.

Thanks, God, for that truth.  I needed that. 

So...as I go to try to beat my record in the "How Fast Can You Chug Your CT Smoothie" contest, my heart is lighter and my mind is calmer. Good stuff.

Love,
Kristie
P.S. I'll get the results on 2/6. Be back in touch then.

Update #46 And Then I Promise I'll Be Silent for a Few Weeks

Kinda easy day today.

Doctors aren't all that concerned about my tumor markers being above normal as they're only slightly above normal. However, they were adamant that it is time - actually I'm technically overdue - for repeat scans and so I will be going back to Roswell on January 30 for scans and then, the next week (2/6), for my regular monthly appointment.

My shoulders can relax again for 3 weeks. Gotta like that.

Thanks for loving us through this time. And I am behind on my reply emails so please know that, although perhaps I've haven't yet responded to something you've sent me, please know that I am so incredibly thankful for and encouraged by your words and even by your "no-words just frowny-face signs" that you send along!
K.

Update #45

Bottom Line: Tumor Markers up outside of normal. Meet with dr. tomorrow morning (9:30 ish) to hear plan. Most likely scans will be scheduled near-term and then the treatment plan will be discussed based on those results.
　
The Bigger Story:There's a group who is doing the bible study I wrote last fall and they wanted to have an intro to the study. So, today, I went online to find the link to the four messages that I gave at my church in the summer of 2011 to send that link along to them. To help them "pick the best one" I stopped and listened to two of those messages.

Just minutes before hearing the news about my tumor markers, I got to listen to a girl (me) talk about what it was like to anticipate hearing potentially hard news the following week when she was going to have scans because her tumor markers were going up and the most likely explanation was that her treatment plan probably wasn't working any longer.

I heard her (me) talk about the provision and the promises of God and how - even when this Hill of a Hard Circumstance threatens to block her view of God (the right view of God, the full-of-promises and full-of-power and full-of-love view of God) - God is never for one second off His Throne. He is never unaware of her. That He is always seeing her, even when she can't see Him. That He is always acting in accordance to a purpose that far exceeds what she can imagine.

Boy did this girl need to hear that.

I know…doesn't it sound so bizarre that I was so encouraged by an August 2011 message from my own self? Quite honestly, I don't know if that makes it a great message that worth's hearing again or makes me a pretty poor truth-keeper! All I know is that I needed that powerful reminder because my Hill still lies before me and I still have to choose where my eyes will rest:

Will they rest on this scary Hill or will they rest on the face of the One who has already done more than what should be enough for me?

Oh that the "right answer" will be, in fact, the answer I choose...
Be back in touch soon.
K.

By the way…here's the link in case you might want a reminder as well. http://www.wchguest.org/media.php?pageID=19
Scroll down to 8/24/2011 and you'll find a 5 minute intro by Chad. Then you'll see that there are four messages from me (dated 8/23 - 8/20. Not the real dates, but that must have been the way they identified the messages) I'd recommend the 8/21 or 8/20 one…

Update #44

Had a tough interchange with Emilie last night. My hold-her-cards-close-to-her-chest kid said some pretty hard things to me. While I don't know, in full, where some of her complaints and perceptions come from, some of them I absolutely do. I cringe because I know exactly where some of them come from.

They come from me. From wrong choices I've made as a mom. From wrong things I've said, from poorly worded comments I've made, from numerous times I don't stop and listen - truly listen - to the internal, softly spoken voices of my kids.

The truth is that Emilie's perceptions - some of them anyway - come because I've earned those perceptions. And that's…well…that's a huge "ouch."

Yes, it's painful at any time to see the effects of your weaknesses, mistakes, sins.
It cuts to the core at any time, right?
But it cuts particularly deep when you hear those words the day before you head to the doctor to find out what your tumor markers are doing.

Shouldn't you, Kristie, of all people know better? Shouldn't you choose better? Shouldn't you prioritize better? Live better? Love better?
Oh yes. Oh yes, I should.
But I don't always remember that.
And, because I don't, last night's conversation happened.

Tears flowed.  And then, thankfully, apologies poured out. Snuggles happened. I love you's were said. Smiles returned. The light was turned out and goodnight's were spoken.

And then what happened?
What do you do after you leave her room after hearing these hard, hard things?

You go into your room. Into the dark closet and you spend several minutes crying. Quietly so that she won't hear and be alarmed.

You spend more than a second thinking - wrongly, but you still think it anyway - that perhaps your children would be better off if someone else was their mom.

You spend a few painful moments wishing you could make everything all better. Wishing either your cancer diagnosis were gone or wishing that you'd never make another mistake again. Yet knowing that both would be nothing short of miraculous outcomes.

These moments are painful. Yet they also serve as deep reminders.

Humble reminders of who I really am. And who I am not.

And that I have a God who sees me.

Exactly as I am.

Imperfect. Mistake-laden. In a wimpy puddle of tears in her darkened closet.

And that He loves me anyway.

He forgives me anyway.

He holds on to me anyway.

He never walks away. Even when I might very well deserve it.

The dark moments of last night are a reminder of the depth of grace - undeserved favor - God has for me, for you. That, through Christ, He called us His own when we were far from deserving. And He keeps us as His own when we don't reflect Him very well.

And, ultimately, that's why I'm sharing this story. Not so you'll assure me that I won't be on the next America's Most Wanted for being the Worst Mom in the USA. But because even in the darkest moments, you and I both need to know that God's forgiving truth matters.

So as I head to Roswell tomorrow to hear - yet again - the internal status of my body, I would covet your prayers. Not just for my tumor markers to be in the normal range, but that - just as God's truth penetrated my darkened heart last night - it would penetrate into any of those dark places in Em's heart as well.

Thanks friends. Back in touch tomorrow or Wednesday…

K.



Thankfully there are many, many, many fun and silly moments too!