Update #33 (From 12/15)

First off, my apologies for being so silent over the past few months. Some of you have wondered if you missed an update; you haven't.  Said simply, things with my health have been going well.  I am responding to this course of treatment.  My tumor markers have been consistently going down and the side effects of this type of chemo have been minimal.  For this, I am grateful.  More than I can express.   

But these few months have been - and continue to be - unbelievably difficult too.  

Because as I've gotten easy news about my own health, Laura has gotten hard news. And harder news.  And, now tonight, even harder news.  And yet, when you read her CaringBridge post that she wrote just minutes ago (see below)...And when you read it and think about what that will feel like as she steps out of her house in the morning...and when you stop and go to that place and imagine waking up tomorrow and wondering about the moments to come.  About what you'd say to your children. About what you'd be thinking as you went into your closet to get dressed, as you looked at the pictures hanging on the wall in the family room, as you passed by the kids' backpacks, as you stared out at the yard in which you have spent hours upon hours playing and laughing with your family...

Oh, are you crying yet?

Do you feel the immense, over-whelming difficulty of this moment for her, for her family? 

Have you attempted to imagine it? Imagine what you would do if you were in that same situation?

If you now find yourself with tears streaming from your eyes or now find yourself with a nasty, nasty lump in your throat fighting back those tears as you ponder the pain of all that, perhaps her words of hope jump off the page in a deeper way.   

"God is good.

He remains on His throne.

He awaits me in Heaven.

In these things I rely and trust. They have not changed.

And there is hope - hope in today and hope in tomorrow."

   

Do you see afresh why I love her so?How I am blessed beyond measure because of the countless ways God has spoken His truth through her to me?  Oh I know you see that.  And because you see it, you also see how much my heart breaks over this.  How painful it is. How devastatingly painful it is to contemplate doing life without her. 

Before I sign off, I want you to know that I hesitated sharing all that with you.  Why?  Because I don't want you to think for a second that I expect you to know how to respond.  That I think you should have the "perfect words" to respond with joy over my easy health news and respond with compassion over Laura's hard news.   If Hallmark doesn't have a card for this situation (which I'm certain they don't!), then please don't think that I expect you to have one.  There are some things for which there are no words.   I'm pretty sure this situation falls squarely in that category.  So...no words needed, but I will totally take hugs! 

Thanks, my friends.  Kristie

______________________________

    

From www.caringbridge.org/visit/laurarider

Hello everyone,

This unfortunately is a note I'd rather not  be writing, but as my faith-filled community who has prayed, fasted, encouraged and loved me so deeply for the last 2.5 years (and beyond), I wanted you to be aware of my current circumstances.

Tomorrow I will be going into a hospice care facility.  My pain and nausea have continued to increase, making basic life a challenge.  Recently I had switched pain/nausea medication in hopes that things would calm down but honestly, they've gotten only worse.  The progression of this disease becomes apparently obvious hour by hour.

It has been an incredibly difficult day in light of this decision.  However, God is good, He remains on His throne and He awaits me in Heaven.  In these things I rely and trust, they have not changed.  And there is hope- hope in today and hope in tomorrow.

I have led a remarkable 39.5 years of life- not one of perfection by any stretch!!, but a life that I bet some 90 years olds would trade theirs in for.  There is pain and grief, yet their is great joy and rejoicing as well.  How they combine, we can't understand, yet they do.

Thank you for you honest sharing in the grief, but thank you also for the joy and rejoicing.  Life is meant to be fully embraced and God has given me that great opportunity over and over.

As I have said all along, thank you for being the Church in action- His hands and His feet.  You have done an outstanding job!
With great love for you all,
Laura

So far...

....so good. 

Took 1st Xeloda chemo dose this morning and took another one after dinner tonight.  So far, no major side effects.  Actually, no side effects at all that I can discern besides a little tingling/ itching in my hands.  Much to my great delight, I was able to go for a long, long walk on this beautiful September, 72 degree day (a bonus summer day for those of us in Buffalo NY!). 

Thanks for your prayers.  Although...people...up the prayers in the "my kids being extra-specially kind" department...what's up with them being such grumps after school?!?!  No worries; I was ever-so-patient! 

Update #33: X-Day Tomorrow

Well...

After a great (and you could interpret that word "great" to either mean "long" or "fabulous" and you'd be absolutely correct!) delay, my chemo pills came in the mail today. 

And, it got me thinking:  I wonder if the FedEx man would have such a big smile on his face and say, "Have a good day!" if he knew what was contained in the package he was delivering to me.

Or I wonder what my new neighbor would think - that is different from the assumption that she may have made - if she knew the real reason why I received flowers today?  (Yes, they were from Laura who wanted me to have a "good" delivery instead of just a yucky chemo delivery today. Sweet, huh?) 

Or I wonder what the bicyclist thought who was trailing me for a minute as I walked down the road, headphones on, singing out loud (hopefully, not loudly or out of tune, but who knows!) if he knew that I was trying to fill my mind and my heart with the truths I know about my God instead of the worries about what tomorrow will be like as I swallow those pills.

Hmm...do I even need to say it? 

Sometimes the assumptions we make about someone may lead us to conclude something that is about the furthest thing from the truth as possible.

FedEx Delivery?  Could be something yucky.

Flowers?  Might be trying something to try to counter balance something yucky.

Singing out loud walking girl?  May be because she's desperate to remember the things she knows that are true, rather than the challenges that swirl around her. 


 

I have a friend who heard some hard news today.  Not life threatening news, but certainly life changing news.  Things that limit the activities that he's used to doing, that he loves to do, that he's dreamed of being able to do for years to come as the involved, on-the-go husband and dad that he is. 

The adjustment is going to be hard for him, hard for his family.

I'm sure that people who don't know the real reason he's sitting on the sidelines may make some assumptions about him from time to time.   They're going to be dead wrong.

You see, he'd do anything to be on that field with his son, with his daughter.  He'd do anything to be as able to take care of the workload around his house. 

He just can't.

At least for right now.

See a guy on the sidelines?  See a crazy girl walking with tears on her face?  See a floral delivery and wish that arrangement was for you?

Hmm...yep....that's stuff to ponder all right.

Love to you all

K.

P.S.  Prayers for tomorrow's first "X-day" would be appreciated...that the side effects would be minimal...that my kiddos would be extra-specially kind...that I would be able to be patient and kind if they aren't!!! :)  Thanks...

Not today...

Just a quick FYI. My chemo pills didn't arrive in the mail yesterday so I didn't have to take them yet. The question is...do I hope they come today or tomorrow or Monday or never...

 

:)

Update #32: Yuck

Well.  Not so easy today.  A few tears shed and perhaps many more in the coming days as the reality sets in. 

 

Bottom-line:  Chemo starts Friday.  However, it's a pill form of chemo called Xeloda that doesn't have as bad of side effects as some of the chemo drugs.  One of the biggest perks (but, really, is anything a "perk" when it comes to chemo?!?) is that I won't lose my hair.  The blond pony tail stays.   That has to be something I celebrate, because there's not much else that's easy to cheer over.   I won't go into the list of side effects...who wants to hear those things.

 

Hmm....what do I do tomorrow in advance of "X-Day" starting?

 

Not totally sure, but you bet it will include a stop to Cold Stone Creamery for a dish of Mud Pie Mojo. 

 

I'll keep you posted. 

 

Love to you all,

Kristie

Tomorrow

Okay...the pit is starting in my stomach about tomorrow. 

 

Going to Roswell tomorrow (Wed) around 12:30 to meet with my doctor to hear the results of my scans that I had on Friday.  As you may or may not know/remember...my tumor markers have been climbing each month so the efficacy of my current treatment plan is in question.  At tomorrow's meeting, my doctor may or may not recommend a change to my treatment plan.  If it's a change, then the only conventional medical options I have remaining all center around different chemotherapy, or possibly radiation, options.

 

Ugh.

Who wants that?

Not me.

Not ever.

As surprising as it may be to you, I look much better with hair.  Bald is not a look a pull off very well...and I have the pictures from 11 years ago to prove it!  :)

 

Hate to be a pain, but I would greatly appreciate prayer tomorrow.  

Thanks friends.

K.

Messages Available



 Hi all...

Some of you requested that I let you know if/when there was going to be a recording available of the talks that Chad and I gave this past weekend at our church.  The church did, in fact, video them and they were posted to our church's website last night.  I will tell you that I watched them and it probably was a mistake because I learned two things: (1) I can make some funny faces at times and (2) I am, apparently, a total "use my hands when I talk" girl!  So much so that Chad asked if I was interpreting for the deaf during my talks because it was just so distracting to see my hands flying all over the place!!! 

All in all, the weekend for me was tiring but a well-timed gift.  It was a gift to me to participate in something like this.  For those of you who were there to see 1 (or 3 as some die-hard supporters did) of the talks, you have been incredibly encouraging to me.  And not just telling me that I did a "good job," but telling me that you learned something or that you came away with a new understanding.  That's just cool.  I'm grateful for that.

So...IF you're interested in watching, here's what you'll find on the website.  When you click on this link (http://www.wchguest.org/#/online-messages) you'll come to a landing page.  Click on the "Launch Sermon Player".  There will be a total of 5 videos that you can watch if you want to. 

The first video is Chad's 5-6 minute intro video.  This was played at each service just prior to me walking up to the front to speak.  Gotta warn you: it still puts a lump in my throat when I see it.

The next four videos are of the talks that I gave. Each is between 15-18 minutes long. 

Message #1 - 6:30 PM Sat:  Elijah - Part I

Message #2 - 9:30 AM Sun:  Elijah - Part II

Message #3 - 9:45 AM Sun:  The 2 Disciples and the Colt

Message #4 - 11 AM Sun:  Mary, Martha and Lazarus

I hope that the sound and the audio are aligned when you watch it.  If it's not, I would highly recommend closing your eyes because the "flying around hands", not timed with the sound, is just down right embarrassing!

Again, thanks for all your encouragement.

Kristie

P.S.  For those of you who pay extra close attention to the details of our life...I just called today to push off for a week my scans and, thus, the follow-up appointment with my doctor.   I decided that, if I didn't absolutely have to, I didn't want to spend a full day of the last week of summer vacation at Roswell being scanned.  When I asked my doctor if I could do this and she said it would be fine to do, I hung up and cried a few tears.  I am just THRILLED that now I do not need to be scanned until after the kids go back to school (9/9) and won't get the results until the following Wednesday (9/14). 

Update #31

I'm at my parents' cottage.  Watching the sun burn off the fog.  Beautiful.

I should be putting the finishing touches on the messages that I'm going to be giving at our church this weekend; after all, the first service starts in just 12 hours!

Instead, I wanted to share something with you.  Hope you don't mind.

 

Chad has already completed his part of the time we're spending in front of our church. He's going a 5 minute video introduction that tells our story from his perspective. This will be shown just prior to when I walk up to the front of the church and share a 20 minute message.

 

I'm a bit crazy, but there are actually four messages - a different one for each service -  that I'm going to giving (unless I chicken out and decide it's too hard after all).  

 

My friend Audrey asked me yesterday why?

It's a good question. 

 

Why?

 

Glutton for punishment?

Wanting to be a superstar?

Naturally competitive and just wanting to see if I can do it?

Preparing for a published sermon series?

 

I've wondered myself. 

I've just had the general sense that this is what I'm supposed to be doing.

 

This morning I think I finally got the crystal clear answer:  Because each helps me -  and may help those who hear it  -  with four key statements that I've said to God over and over again over the past two plus years. Most of the time through tears or frustration.  Sometimes through weariness, doubt, desperation, even anger at times.  

 

I think this has been and is all about God saying to me, "Kristie, I've heard your questions and your protests countless times. I've heard you each and every time.  Are you finally ready to listen to my response? It's been there, in My Word, all along.  Are you finally ready to see it? Trust it?"

 

Phew. 

 

So...here are those four statements:

Message #1:  I want more.  Despite what I know you've provided for me, I want even more.

Message #2:  I've had enough. Make it stop; I don't want to do this anymore.

Message #3:  I don't understand what you're doing, Lord. What the heck are you doing?

Message #4:  This is hard, really hard.  How much harder does this have to get before you'll rescue me?

 

Okay.  Back to the preparations.  Kinda important since I haven't even really started message #4 yet. 

Yes, I know, it's tomorrow morning. 

Don't freak me out by reminding me!

 

Kristie

Again, if you'd like to come this weekend, the services times are:

Tonight at 6:30 PM and tomorrow at 9:30, 9:45, and 11 AM. All but the 9:45 are contemporary services in the big Worship Center.

Wesleyan Church of Hamburg 4995 McKinley Parkway Hamburg, NY. 

http://www.wchamburg.org/

Childcare/kids Sunday school at all services. 

Update #30

Wow.  30 updates.  That's a lot. This one is a quick one, I promise.  After all, it is summer and who wants to be stuck in front of their computer reading when there are fun things to be done outside!

 

Little update on my health:  Not much has changed. Tumor markers still climbing. I'll go in next Wednesday for my next injections, blood work and doctor's visit. And they will schedule my next set of scans for the end of August  (yuck!).   I feel good. I just have some  aches in my back/hip that - while they don't really interfere with life - they cause me to not really "forget" about my diagnosis and remind me that things are still "not right" inside my body. 

 

Little update on Laura:  Most of you know or know of my best friend Laura and her two-year experience with cancer.  If you haven't heard her about the new challenges that lie before her, here is her caringbridge website (www.caringbridge.org/visit/laurarider).  Take a quick read; it's worth your while and we would both appreciate your prayers for her and her family - especially her mother-in-law, Anne Rider, who was diagnosed with Acute Myeloid Leukemia a couple of weeks ago.  BTW - If you haven't had the pleasure of meeting Laura yet, you are SO missing out.  Words truly cannot describe how wonderful she is; I just love her to pieces. 

 

Little Update on a "fun" thing:  A few weeks ago I received an email from our pastor in response to an update that I had sent out.  In his email, he asked me if Chad and/or I would like to speak in church in August about our experience and how it has impacted either our relationship with one another or our relationship with God.   Chad and I talked about it and agreed that we would be willing to do this.  After we said yes to what we thought was going to be a 5 minute interview type thing, we found out that we are actually giving the message.  You know...the sermon, the homily...the thing that usually only a really, really, really qualified person does. 

 

Yikes.  

Did I also happen to mention that our church has four services?  And that I have to speak in all four of them?    

Did I say, "Yikes" yet? 

 

In truth, as I anticipate this, I am both excited and scared. More excited than scared now.  But certain that I will be more scared than excited as the weekend approaches! 

I think one more "Yikes" is in order.

Yikes.

 

So, I have two invitations for you:

 

Invitation #1:  Pray.  To pray for us as you think about it. That we'll know what it is that needs to be shared.  There's lots of stuff that could be shared, but what needs to be shared for that day, for those who are attending is still unknown to me.  The idea of sharing the same thing 4x does not appeal to me at all. However, the idea of preparing four different messages is a bit daunting so who knows what will happen!

 

Invitation #2:  Come.  If you don't have a church home I'd love for you and your family to attend one of these services.  If you do have a church home and want to go on a "field trip" on Saturday or Sunday, I'd love for you to come as well.  As you might expect, there's something comforting about looking into a crowd of hundreds and seeing some familiar faces. 

 

The Weekend of August 20 and 21

 

Wesleyan Church of Hamburg 

4999 McKinley Parkway Hamburg, NY 14075 

http://www.wchamburg.org/  716.649.6335

 

Service Options:

Saturday at 6:30 PM (a band leads worship of contemporary songs)

Sunday at 9:30 in the Worship Center (same rockin' band)

Sunday at 9:45 AM in the Chapel (think organ, choir, hymns)

Sunday at 11 AM in the Worship Center (same rockin' band again)

 

If you have children, I would strongly encourage you to take advantage of the kids' Sunday school options.  They're just excellent!  Truly.  My kids love our children's program and most parents do too - and not only because of the uninterrupted hour we get, but also because we know that our kids are having fun while learning cool stuff about God.  Also, parents of babies, toddlers and pre-schoolers get pagers when you drop off your child so if the teachers need to find you they can buzz you at any place in the building.  Give me a call or shoot me an email and I can help you out if you're thinking about coming with your kiddos.

 

Thanks and enjoy the rest of this fabulous summer!

K.

 

 

Update #29

Who would have thought that getting two gigantic shots in the bum and an infusion in your arm would be an excellent outcome to a trip to Roswell?

Not me.

Until today!

Although my tumor markers are up again slightly, my scans were basically unchanged from 6 months ago.  This was wonderfully surprising news!  I fully expected - based on lots of factors - to walk into my appointment today hearing that I needed to start chemo. My oncologist prepared me well for hearing that after my meeting last month. 

So...what easy, easy, easy news to hear that the scans didn't show progression of disease and, therefore, no treatment change.

That's right;  you heard me correctly.  No treatment change.  That means...

NO CHEMO!!!!

I will be rescanned in 2-3 months to see how things are going.  Until then....

NO CHEMO!!!!

Did I say that yet? Hmm...let me try that again to see how it rolls off the tongue...

NO CHEMO!!!!

Yes.  That's a sweet, sweet sound.

So many emotions, so many praises that are easy to lift to God, so many things that dance through my head. 

But, for now...really...I don't have a lot of words. (Shocking, huh!)  Just thankfulness.  Deep, deep thankfulness.

Summer vacation begins in 6 days.

I cannot wait!

Thanks for your prayers and your encouragement.  As always, you floor me at how well you love me.

K.

Update #28 (Yesterday's Update)

**Sorry...didn't get to post this yesterday...

Tomorrow is the day that I hear the results of my scans. 

Ugh.

I really, really, really don't want to go. 

 

Lately I've been struck by how similar I am to my daughter.

For those of you who know us both well, you'll probably be shocked by that statement.

(And not just because we don't look like each other!)

 

While our personalities aren't any where near the same, we do have this in common:  we don't want to do the hard thing when we don't understand or see the benefit of it.  We both want our loving Father to say to us, "No, my little one, you are spared this hard part of life."   

 

While she actually hides in her room and cries and becomes (as Chad and I say) totally irrational because she's just so afraid, my advanced age(!) prevents me from doing such outward things.  Yet, sometimes I feel the exact some way. 

 

Sometimes when I tell her that she can't let fear win....

Sometimes when I tell her that she needs to do this because it's, ultimately, going to lead to something better...

Sometimes when I tell her that she can trust me; I would never ask her to do something that wasn't beneficial...

 

Sometimes when I tell her these things, my voice catches and the tears start to pool in my eyes because I am just overwhelmed by the fact that, I too, need hear the same words from My Heavenly Dad.  

 

I, too, am scared. 

I, too, wonder if it's all worth it. 

I, too, need to remember that He is totally trustworthy. 

 

The other day a group of wonderful women came to my house to pray over me before I left to go to Roswell for my scans.  They sat me in a rocking chair and they prayed and prayed and prayed over me.  It was wonderful to be loved in that way. It was glorious to hear them pray the heavens down for me.  They praised, they petitioned, they told of His glory and His strength and His love. They testified to His goodness and His mercy and His kindness toward me.  They spoke truth. 

 

Yet, all that I could sob out in return to My Father was, "Please, please, please make this stop.  I don't want to do this anymore. I don't want to go. Just take this away." 

It wasn't the first time I've prayed that. Far from it.

(I've told you time and time again; I am not a faith superhero.  I'm just a girl with a really big God, remember.)

 

I wonder what God thinks when he hears the honest and so incredibly faith-less, words of His little girl? 

 

Does He, like I do with Emilie, just wish she would trust me when she can't see?  I'm sure.  I'm sure He does.  I'm sure He has compassion on me. I'm sure He knows that this is hard for me.  I'm sure that He knows all that, has weighed the cost of this journey on me, and said, "My sweet Kristie.  I have heard your cries.  I have heard your childlike petitions to me.  I have heard all that and I am not dispassionate towards you.  No, that violates the truth in My Word that I have moved heavens and earth for you and when your heart breaks, mine does too.  But, it doesn't change my perspective. It doesn't change the the Plan and the Dream I have for you.  It doesn't change the work that I am accomplishing in you, through you.  As you wait, trust me.  As you wait, let me provide for you what you need today.  As you wait, let me love you.  You are my child.  As much as Emilie is your little girl, You are mine.  Do not forget that.  You. Are. My. Child."

 

Oh Lord. 

Tomorrow at 9:30 (or, actually 11 AM because there's always a wait!), remind me that You are my Abba. That I belong to You. That You See.  You know. You act.

Father, all that, and more.

 

Kristie

Update #27

In short...

 

Tumor markers up.

Cheeks (you know, those cheeks)  sore.

A few tears shed.

No decisions made.  

Yet.

 

(Sometimes I impress myself with how few words I can use to summarize 3+ hours of my day.)

 

If you want a few more words, keep reading...

 

In essence, the probability that this 3rd line anti-estrogen is working is slim at best.  I shared all of my questions with my doctor regarding treatment options and she, once again, was fabulous in addressing them and doing her best to listen to me as a whole person and treat me as such.   Not to bore you with all the details of our conversation, but she understands what's at stake for me. She understands the limitations of medicine to solve my problem.  She understands my need to bring honest questions to her and have her answer me as honestly as she knows how.   

 

And it's hard for too.

She had tears in her eyes today, too.

Not because she sees my situation as hopeless today; but because she sees me. 

She sees me.

She understands - to some degree - what it's like to contemplate all this.

 

A new friend of mine (actually a Catholic Nun...long story...tell you later!) asked me last week what name do I most often call God.  When I pray, what name do I use?  

Holiest Ruler of all of Heaven and Earth was how I answered her.

(Just kidding. But it was a bit disconcerting to tell a nun how I talk to God.  I mean, she's the expert in talking to God, not me, right?) 

 

When I shared with her my real answer to her question, she encouraged me to expand the name I use when I think about and talk to God.   

 

I chose Elroy.

 

Oh, I mean El Roi.

I hope you laughed.  (That's about as funny as today's note's gonna be, folks)

 

Did you know that God calls himself by many names in Scripture.  One of those is El Roi.  It means the God who Sees. 

 

I gotta know that, right now, when things are hard and questions loom and my "normal" may be changing, I gotta know that He sees me. 

As much as I want to see Him, I gotta know that He sees me.

 

He sees me as I lay in bed contemplating the events that may take place today. 

He sees me as I drive into Roswell singing at the top of my lungs. 

He sees me as I wait in a lovely hospital gown.

He sees me as I sit here - ready to cry again at the drop of a hat - trying to honestly tell you what's going on, what I feel, what I know.

 

Yes, as much as His Name is Lord...as much as His Name is Savior...as much as His name is Father, Provider, Prince of Peace, Healer...as much as He is all those names and more, 

He is the God who Sees.

 

I needed to know that today. 

I hope you did too.

 

Thanks for your prayers.  I cannot even imagine doing this journey without you.

Love to you,

K.

 

Tomorrow (Wednesday)

Is it possible that Wednesday is here again and 4 weeks have gone by since my last visit to Roswell?  Hmm...what word would I use to describe how I feel about going there tomorrow?

 

Yippee?

No. That definitely isn't it.

 

Dread?

No.

 

Unsettled?

Getting closer.

Much closer.

 

My appointment is tomorrow morning at 8:30.  Almost positive that I'm going to be getting two shots in the tushy, but the rest of what's going to happen is unknown to me.  (BTW  who would have thought that anticipating two shots in the bum is the easy part of your day?) While I don't have any scans to go over with my doctor tomorrow, I probably will have some decisions to make about what to do next in terms of treatment.  Bottom-line is that I need wisdom that I don't have.

 

So the overall prayer request is that God would provide some serious wisdom.  If you're looking for specifics, these are the things that I may need to make decisions about:  

 

1.  I may have to decide if I'm going to get the infusion of the bone strengthener tomorrow.  I didn't get it last month (funny story, actually, as to why that was...almost learned the hard way that, if you pass out when being stuck with a needle, they call a "code" and lots of docs and emergency staff come running to your room.  I held on to consciousness by a thread so I escaped that lovely attention!).  And I'm not sure that I want to get it again.  Long story, but let's just leave it as I'm not sure that this medicine hasn't negatively impacted my body vs. positively impacted my body. 

 

2.  I may have to decide if I'm going to get re-scanned. I know that my doctor will recommend that I have new scans in June, but I'm not sure that I want to.  Why?  Well, that leads me to my 3rd prayer request...

 

3.  If scans don't show progression, then I will keep doing what I'm doing.  If they do show progression, then I'm not sure that I would choose to do anything about that now.  I know; it sounds crazy.  Believe me.  I know this.  You don't entertain not doing anything medically about a scary diagnosis unless you've thought long and hard about it.  So...not to bore you with my logic, but.... the central question is: when do you decide to put nasty toxic chemo into your body and make yourself feel yucky, impact your ability to live a full life, and cause damage to the healthy parts of your body? When do you decide to do that when you don't feel yucky at all now?  In fact, other than some aches in my back/pelvis, I feel pretty good.  A bit limited in exercise, but that's it.   I don't necessarily feel "right,"  but I don't feel sick.  Chemo would change that.  And during the summer with the kiddos home...yuck.

 

Ahhh...can you tell that my mind has been working. Trying not to "run ahead" if you know what I mean, but also trying to be prepared.  Sometimes a tough balance.   Thankfully, as fast as my brain has been moving, God has been ministering to my Spirit and reminding me that He is trustworthy.  A line from my favorite devotional keeps bringing me comfort...

 

 "Live in trusted dependence on My limitless resources."  - Jesus. 

 

Live.

In trusted dependence.

on His limitless resources.

 

Like it.

 

One final thing...for those who have been in prayer for my best friend, Laura, during this past almost two years with her own journey with cancer...guess what? We've done it again; we've (unknowingly) kept it simple for you:  My appointment is at 8:30 tomorrow and her follow-up appointment is at 8:45.  Prayers for both of us would be greatly appreciated.  

 

Thanks and I'll be in touch tomorrow to let you know how it goes.

Kristie 

 

Just a Quick Comment

Just read a blog from a friend of a friend of a friend. 

 

Apparently, we're pretty similar.   About 40, blonde, married, 2 kids. 

Oh, and we both have cancer.

I read her story and I hear echoes of my story inside it.

 

And it puts a pit in my stomach.

 

Why?  Not fully sure.  But even though she's a wonderful writer who shares an encouraging, faith-filled and often funny side of her life, it just puts a pit in my stomach and makes me want to click off her website and never return.

 

I'm thinking that some of you do that with my updates.

I'm thinking that there are some moments when you see an email from me with the word Update in the subject line, you just can't "go there" with me that day.

 

I'm totally cool with that.

I totally get it.

Some days I can't "go there" either.

No apologies.

 

For those of you who do read each and every update I send out, I just want you to know that you are very, very brave; I admire that.

 

Much love and many thanks to all of you,

Kristie

Update #26

It's been a year.  Hard to believe, but true.

A year ago today, I was sitting in the doctor's office hearing some words that were unbelievably hard to hear. 

"You're taking this really well," he said as he looked into my eyes with a mixture of sadness and uncertainty after he told me that I had metastatic lesions on my bones.  I'm sure part of him wondered if I really understood what it was he was really saying.  

Oh, I got it.  I understood what he was telling me.

I understood that I was just delivered news that meant my life would never be the same again.   News that meant any security I had in planning life beyond the confines of today was gone.  News that meant everything I had believed about my God would be tested and challenged to see if He was truly big enough, truly loving enough, truly real enough to - not just help me make it through this, but to - truly live an abundant life through this.

If I didn't fully process it all sitting in his office, I certainly got it as, the next morning, I held it together while getting Emilie and Daniel ready for school and out for the bus.  I got it when I just sobbed watching them get on the bus and wondering what hurts may lie ahead for them, for me, for Chad.  I got it as I called Laura and just kept saying, "I can't breathe.  I can't breathe.  When will I be able to breathe again?"

Oh, I got it alright.  However, 365 days later I'm still learning how to live with it.

Some days it's easy. Truly.   But sometimes it's still hard.  Sometimes it's a battle to keep my eyes focused on the many things I have to be thankful for.  Sometimes it's a battle to not let my eyes only see the scary size of the waves surrounding me rather than see the firm ground upon which my feet stand.  Sometimes it's a battle to constantly lay down my natural desire to get security from the things of this world (my house, my family, my bank account, my upcoming vacation plans), and be - not just okay with - but satisfied with the security that God promises me as I trust in Him.  Sometimes it's hard to rest in the promises of God.  

Oh my goodness...so many things to share (after all, I haven't been in touch in over 6 weeks with you all!)...

I guess what strikes me most this morning as I sit at my PC listening to some pretty cool music (like this one from Kari Job:  http://www.youtube.com/watch?v=NI_1YliutzA), is that, above all, this past year has just caused me to see the reality of life.  It - cancer - has stripped bare any pretense that I control my life.  And, although I may have more doctor's appointments on my calendar than you do, we both have this common truth:  the path our lives will take is unknown to us.  Despite our best efforts, we just don't fully know the twists, turns, ups, and downs that the road we're on will take. 

Are you okay with that?

Does it bother you?

Does it cause you so much fear in your stomach that you just want to stop reading right this second so that you don't have to think about it and pretend that it isn't true?

Me to.  All of those options at one time or another. 

This past weekend, my women's bible study group went on a little retreat.  In honor of the Royal Wedding, the theme of our weekend was "Living the Dream. Leaving a Legacy."  It was just fabulous. (If you're interested in getting more info about it, let me know.)  And we talked a lot about the things about our life that are unknown to us today and how we respond to that.  Although I won't take time now to walk through all of what we studied and discussed, here's the number one thing that I realized this weekend: 

How I will be remembered is a result of what I choose today.  

I won't be remembered as someone who believed God, unless I believe Him today.

I won't be remembered as someone who loved her husband, unless I love him today.

I won't be remembered as someone who is generous, if I'm not generous today.

I won't be...You get the picture.

It is powerful to me.  It keeps me fully engaged in the present and asking, "What am I going to do with what you've given me today, Lord?"  And, it keeps me fully focused on trusting Him to walk with me and provide for me through all the uncertainties, through all the things that I cannot control.

365 days ago (almost to the minute) I sent out an email to many of you letting you know of my diagnosis. In it I wrote, "...This isn't taking Him by surprise. This isn't something that denies who He is.  He is the Rock. The God Eternal. The Unchanging One.  Nothing - no diagnosis, no painful treatment, no statement of what lies ahead of me - changes that. No matter how hard it is to think of those things." 

It's cool to know that I would say the same thing again today. 

He is the Rock.  

He is the God Eternal.

The Unchanging One.

Nothing changes that.

Amen.

Kristie

Update #25

Quick update now...more later...

 

Hard news today:  cancer appears to be progressing.  The places where I feel (a little) pain are places that show on the scans as having cancer.

Have a choice:  weekly chemo (taxol/avastin) or a 3rd-line anti-estrogen treatment.

After extensive conversation, have chosen the 3rd line anti-estrogen.

I'll be rescanned in May. If there's any progression at all, chemo will be the next step.

 

The anti-estrogen treatment is delivered by injection.  Today I was the lucky recipient of 2 shots.  In two weeks I get two more and then I'll get two more on a monthly basis after that.   And, oh, did I mention the shots go into my butt?  (Thankfully, the few extra pounds I've gained these past months helped to absorb the pain!)

 

I'll write more later, but that's the scoop for now.  Off to put a heating pad on my cheeks.  You know...those cheeks, not the ones above my neck! :)

 

Love to you all and thanks for your prayers.  Despite the swirling waters, there was a deep sense of calmness and peace.  God does that. 

Kristie

 

P.S.  Almost forgot...the bright spot of today's medical news is that they've changed their assumption about the two small spots in my lungs; they're now thinking that they are NOT cancer as they haven't changed a bit since my first scans in May.

Prayer Request

Headed to Roswell tomorrow (Wed) for an 8:30 meeting with my doctor to hear her "final analysis" of what's going on inside my body.  Won't lie.  Not totally calm about it.  Have minor aches in my back and pelvis that make the mind wonder.

 

But I also won't lie and tell you that I'm a wreck; I'm not.   And it's because, today, I heard afresh some really cool things that I needed to hear and place at the forefront of my mind. Things about... 

 

The infinite trustworthiness of Christ - that He is faithful and good. No matter what.

The truth that I am wrapped completely in his arms and hidden in His protective wings.

The fact that God provides so much more than even my (excellent!) dad can. 

 

So as I type this my heart and mind are soothed by these truths - how thankful I am for that.   No knot in my stomach.   I pray that continues tomorrow morning.  If you have a moment, I would appreciate prayers for Chad and me as we meet with the doctor tomorrow.  

 

As always, thanks so very much and I'll keep you posted.

Kristie

Update #24

Seriously, this is getting ridiculous.  I would say that I'm laughing about it, but there's just too much at stake to find this funny.  

 

The short answer is that we still aren't sure what's going on. 

(I know that you must think that I have crappy medical care, but I assure you that I don't...I'm a complicated case, apparently).  

 

Did you ever write those poems in elementary school where you tell a story by starting each line, alternately, with "Fortunately" and "Unfortunately"?  I feel like that's the theme of today as it relates to the news I heard from the doctor:

 

Fortunately,  my tumor markers went down.

Unfortunately, they only went down minimally.

Fortunately, there was no cancer in my ovary and no follow-up is needed.

Unfortunately, my bone scan and CT scans showed additional activity.

Fortunately, it still might be due to healing.

Unfortunately, I have to have an MRI of my spine to see if this sheds that "last piece" of information that will clarify my bone situation. 

Fortunately, the spots in my lungs haven't changed.

Unfortunately, there are too many "fortunately's" and "unfortunately's" to know even medically what the deal is until I meet with doctor again, after she's had the tumor board at the hospital review my case!'

 

Don't get me wrong: hearing all this is way better than hearing only "unfortunatelys"; I saw several patients today who looked as if they've heard - and have been hearing - lots of bad news lately. 

 

But if I didn't tell you that it's not what I wanted to hear, I would be lying.  And, as you know, I made a commitment to you to be as brutally honest with you all as I can be.  This journey isn't meant to win anyone awards.  I'm not up for an Academy Award for Best Actress.  There are enough actresses in the world, and there are enough people (me included) who spend way too much time making it seem like everything's good, everything's fine, that faith is clean and simple and straightforward when it's anything but that.

 

What I wanted to hear was: "Oh my goodness Kristie.  We can't find a trace of cancer in your body.  We're totally perplexed and you are totally healthy."  I don't honestly think that any amount of additional faith will ever change this desire. 

 

I really don't. 

 

And I will sing songs of praise, do a funky dance, embarrass my kids, and tell the stinkin' world what has been done the moment I that I do hear those words.  (I will.  Just you wait.  Be ready to look at me as if I'm a crazy lady.  I'm cool with that.  J)

 

But, unfortunately, today isn't that day.  Or at least it doesn't appear to be that day. 

 

After spending a little time crying and worrying as I left Roswell and had to make some hard phone calls to people I love, I have been reminded that I will always be living with some degree of uncertainty.  And, guess what?  So are you - whether we both realize it or not, both like it or not, both want it to be that way or not, both do everything in our power at times to try to pretend that this isn't true. 

 

So...hmmm...I've thought all afternoon about this and here's my response to living in uncertainty...here's what I'm going to do about this:

 

I'm going to live.

And not just be alive.

But live.

Thanks to Christ, that means that I have the privilege and the right to live abundantly, live joyfully, live peacefully, live contentedly, live hopefully, live humbly, and live expectantly, live without worry or fear or anger or despair. 

 

I think I'll take it.  I hope you do too.

 

Thanks for your prayers.  (Really. I need to come up with a new way to say "thanks."  You all are out-doing yourselves in loving me and my family...it's fabulous!)

 

Love,

Kristie

 

Update #23 - Part II

Back home. Fortunately, things went extremely smoothly.  Our friend Danielle joined us at the hospital and I think she's going to have to come with us each time because today... 

• We made it through Roswell in record time.
• I only had to have two "sticks" in my arm instead of the usual three.
• I didn't need to sit through an extra set of scans during my bone scan; a "one-take wonder" I was this time.
• We even had two hours in between tests that we could actually leave the hospital and have a yummy lunch downtown!!!  (Sugared strawberries in a salad are fabulous. Who knew?) 

The only unfortunate part was that I was a little too efficient. Chad dropped me off at the entrance and then parked the car. By the time he parked and walked into the waiting room, I had already sucked down my barium smoothie so - much to the dismay of my competitive nature - we weren't able to time how long it took!  I almost said that I had to wait until Chad showed up with his stop-watch, but decided getting it over with was top priority.  (I did do a little bragging with the nurse about my mad skills; she was very impressed.)

 

So...I go back for the results of my scans/blood work on Wednesday at 9 AM.  Those meetings are always a bit unsettling.  Waiting for my doctor to come into the room and trying to read her face for what might come out of her mouth in the .2 seconds it takes for her to start speaking is crazy hard.  

 

Thanks for your prayers and encouraging words today. They matter. 

 

I'll be back in touch soon.

With love,

Kristie