Update 2 Million and 65!

Have you ever wished for a window? 

 

My dad worked at Kodak for 30 years.  Because of the need for total dark conditions for many of Kodak's manufacturing processes, he had a few jobs that were located in windowless rooms and buildings.  I remember being probably 10 or 11 and feeling really bad for him that, in the winter months, he'd spend most weekdays without seeing daylight; he'd go in before the sun came up and come home after it had gone down.  Although he never complained, it just didn't seem right to this little girl that anyone had to live anywhere that didn't have windows.

 

In some respects, today was a windowless day for me.

 

One would think that MRIs, CT scans, bone scans, blood work/tumor markers, pain symptoms (or lack thereof)... would be clear windows that reveal what's going inside my body.   So far - today included - this has not held true for me.  This time, the MRI I had last week didn't show anything surprising (it wasn't clear, but didn't show anything vastly different than my other scans), but my tumor markers were above normal for the first time since June.   

 

So that's bad, right?  Tumor markers are no longer normal...that's got to be  bad, right?

 

It could be.

It could not be.

 

What?

 

Apparently it's not uncommon that when a patient starts a new treatment (as I did this past month), tumor markers can go up temporarily. So although it could be a sign that my cancer isn't responding to anti-estrogen based therapies, it's not always the case and my doctor tends to think that I am responding to the treatment.  She said to me, "I'm not all that concerned, Kristie.  They didn't tick up much.  We need to just wait and see until next month."

 

Wait.  And see.  Next month.

 

Five words that, quite honestly, I'm getting tired of hearing.

Five words that make my head and heart be tempted to swirl with fear, worry and frustration.

Five words that make everything in me look frantically for a window.

 

Where is that window that tells me - unequivocally - what's going on inside my body?  

 

I've asked Roswell this question.  I've asked my friends in the medical world this question.  Heck, I may have even asked YOU this question in a moment of frustration!  And don't think that I haven't asked the Lord this question as well.  I've asked Him a million and one times, "What is going on in my body, Lord? Where is that window, Lord?  Show it to me."

 

Do you know what stinkin' answer I get every time - whether I want this answer or not...whether I'm looking for this answer or not...whether I cry when I hear it or not...whether it satisfies me at that moment or not?

Kristie,  I am all that you need to see.

 

But, Lord, I want to see - with my own eyes - what my bones are doing, what this disease may or may not be doing to my body.

Kristie, I am all that you need to see.

 

But, Lord, why is this so confusing? Why can't I see for sure which medical route to take, which nutritional route to take, how this will go?

Kristie, I am all that you need to see.

 

 

Laura and John and the kids came to our house on Sunday.  The boys went to the Bills' game (and I use the word "game" loosely). The little girls played American Girl dolls while  Laura and I talked. And talked.  And...guess what...talked.  Although we talked about way more things than what I can mention here, we talked about this old hymn that both of us used to think was a bunch of old "church-y" words that didn't mean much to us.  Boy, has that changed.

 

The hymn is "Be Thou My Vision."  Although it's not generally my "style" of music and although it uses some old, old words that are hard to immediately understand, I have fallen in love with this hymn.  (Click here to listen/watch if you'd like  http://www.youtube.com/watch?v=9orhbOwbCK0&feature=related)

 

The lyrics speak of wanting to see only one thing: God - the fullness of God, everything that He is and nothing that He isn't.  About Him being my best thought. About His presence being my light no matter the dark circumstances surrounding me. About Him being my wisdom, my great Father, the inheritance I long for more than any riches that I will receive from my earthly dad.  This hymn invites God to be first in my heart, to be my true treasure, my victory won.  And it ends with a simple, yet unbelievably challenging, line to say with an honest heart before Him: 

 

Whatever befall, still be my vision.

 

Whatever befall.  Can you say that honestly - with no reservation? Nothing held back?  I'm not sure that I can at all times.  But what I am beginning to realize is that I want to be able to do that at a moment's notice, with a pure heart.  I want to be able to stand honestly before My Father and say to Him that You are all that I need. That Your face is all that I need to see. That I trust You with my life and with my death - whenever and however that will be.  I want to say to Him that, if I am kept without a clear window to my physical condition from now until next month or the month after that or the year after that, that I will be satisfied with knowing that  You are all I need to see.  

 

Lord, today...at this moment...be my vision.  All that I see.

 

So, what do I do for the next 28 days until my return to Roswell?  

 

I wait. 

And I sing that song.  

And I keep my eyes fixed on Christ.

And I trust in the One who created me, the One who loves me, dreams over me, the One who sees me.

Oh, and I get to go one a fun little trip to Aspen with my darling husband in a few weeks. (No skiing for me this year, but other adventures await, I'm sure)  :)

 

Good night, my friends...

K.

Tonight...I'm Home

Hi all...

 

Let me just say that today wasn't a day that I really want to repeat any time soon.  Although I don't know the results of either one of my tests, they were both not fun (surprise!) so I'm glad they're both over.   

 

I began my day with a Gyn ultrasound.  (I won't go into any more details than that other than to say what woman wants to do that 3 days before Christmas!) And I ended my day with an MRI which took over 1 1/2 hours to do.  Poor Chad, sitting in the waiting room without a functioning Blackberry.  Wait...what about poor Kristie?  Oh yes, that's right...I wasn't exactly lying on the beach reading a good book.  No...picture being totally still inside a small tube that makes some crazy, crazy loud noises for 90 minutes.  No twitching, no coughing, no talking, no singing and certainly no stretching.  However, they do pull you out of the tube - you can't move however - to inject some contrast solution into a mini-IV they put in your arm. That was a nice break.    When they finally shut off the machine and pulled the ear plugs out of my ears, I realized that I had just gained a deeper appreciation for construction workers who use jackhammers all day long. 

 

So that was the not-so-great part of my day.

 

Want to hear the great part? 

You. Yep, you all floored me again.

 

My email last night wasn't intended to be a plea for help with Christmas preparations.  It was meant to just say, I DON'T WANT TO BE AT ROSWELL 4 days before Christmas. 

But when the 40+ emails rolled into my inbox throughout the day, each one with either a word of encouragement or an offer to make cookies, bring dinner, clean my house, wrap my presents, stuff my Christmas card envelopes...

 

But when I found out that someone was going to come over to watch my kiddos tonight so that I didn't have to go to Roswell by myself as I thought I would have to...

 

But when I got home at 8 PM tonight and someone had broken into my house to deliver a coffee cake...

 

But when I checked my voice mail and heard the news that a contingent of people are bringing me dinner, breakfast, treats, snacks...

 

But when Chad came home with two huge plates of Christmas cookies and an offer to bring dinner in the next day from a friend...

 

But when several people offered to watch my kiddos so that I can have some more time to prepare...

...But when all these things happened, I was truly floored.  In all honesty, I am embarrassed that I complained in my email.  And I am humbled that people who are just as busy - if not even busier - than I would prioritize loving me and my family.  And I am even more overwhelmed with how well the Lord is taking care of us through you. 

 

So, here's what I want you to know:  while you all cannot fix this, you are absolutely demonstrating to me the power of active love - whether that's measured by cookies baked or prayers prayed or words spoken or hugs given.    Whether you realize it or not, you are neon signs pointing me to my Heavenly Father...who is the Only One who can set all things right, who is the Only One who can go into the MRI tube with me, who is the Only One who is wise enough to guide us through this difficult chapter in our life's journey with Him.  

 

Where would I be without Him?  Without you?

 

And that, my friends, is what makes a hard day not quite so hard.

And that's what makes a day that - on one hand I don't want to repeat - go down in the record books as a good day.

And that's what makes the tears flow for good reasons down my cheeks.

 

Grateful.  That's about all I can say. Grateful.

With love,

Kristie

Last Night...

Hi all.

 

Just a quick request for prayer...

 

I'm the lucky one who gets to go to Roswell twice tomorrow.  Once in the AM for a routine Gyn exam/ultrasound and once at 5 PM for an MRI of my back.  The MRI is a follow-up from my appointment a couple of weeks ago. I've never had an MRI of my back and they're doing it to get another type of image so that they can better assess whether or not the increased activity that showed up on both my CT and Bone Scans is due to tumor flare or to a progression of disease.  I won't get the results until the 28th (when I go in for more blood work and my next injections).

 

So, let's see...Christmas cards aren't done.  Presents aren't wrapped.  Baking isn't done.  House isn't clean.  Meals aren't planned...

The perfect time of the year to spend several hours at Roswell, don't ya think?!?

 

Thanks, friends...

K.

Today - End of The Day

Sorry this update is so long in coming.  Came home from my appointment to a major snow storm and no power.   Now, power is back on, kids are playing in the snow and I have a couple of minutes to update you.

 

So...in summary...for Laura it was a good day all around. The doctor is pleased that, after taking out the tumors and doing an examine of the outside of the organs in her abdominal cavity (including "washing" them and dong the pathology on the cells from that washing), no evidence of cancer was found.   She is feeling pretty good and doesn't have to see him again for 6 weeks.  Great news!

 

For me...it's a mixed bag.   My tumor markers are good and the spots in my lungs are the same.  The problem is my bones.  My scans (both CT and bone) show more "light spots."  One explanation is that this is a progression of my disease (i.e., the Tamoxifen isn't working any longer).  The other explanation is that, no, the medicine is working, but this is the last bit of tumor flare that first appeared back in June and, thus, it's actually bony turnover or evidence that my bones are healing.  My doctor's gut feel is that it's tumor flare. However, she doesn't want to keep me on Tamoxifen any longer in case she's wrong.  The good news is that she has recommended that I go on another, just-as-effective-if-not-more-effective-than Tamoxifen anti-estrogen treatment (Femora).  This means that I continue with basically the same treatment...one pill a day...hot flashes...but NO CHEMO.  I will start taking this daily pill tonight and will continue for probably 2 months before I have to be scanned again. 

 

So...the best medicine has to offer is still an incomplete picture. 

 

In some ways that's super frustrating and in other ways it just makes it even more clear that there still is only One in whom it makes any sense to place my hope, my trust and my future.   Oh that I can keep my eyes focused on Him...

 

Thanks for your prayers today.  As hard as it was for Chad and I to wait 2 hours (1+ of those hours were actually in the exam room after hearing that, "the report from my scans isn't great, but Dr. O'Connor is consulting with the radiologists to see how she's going to interpret these results...she'll be in with you as soon as she can." How hard was that?!?)  it was just fabulous to know that we were not "alone" in that room.

 

Love to you all

K.

Today

Hi there.  Just a quick request for prayer...

 

Both Laura and I have doctor's appointments today at 10 (ish).  (Nice that we coordinate our schedules for you all, eh?  Actually, it wasn't planned that way...)

 

Laura's following up with her oncologist. Probably a quick appointment as she's feeling pretty gosh darn good after her surgery a couple of weeks ago, but it is still challenging to step foot into a cancer center even for just a meeting with doctor. 

 

And for me...I had a bone scan and a CT scan on Monday and will get the  results of those today.  I am a bit worried as they had to take "extra pictures" with the bone scan.  If everything looks the same/better than my last scans in August, then the course of treatment stays the same.  If not, it's probably chemo.  Obviously, my choice is to keep going with the current treatment plan; call me crazy, but I kind of like having hair and not feeling nauseous.  

 

So...if you have a moment this morning, would you just pray for peace and joy for both of us as we wait and as we hear what the doctors have to say?  Knowing that there are prayers being said over us is more comforting and powerful and we're so grateful to you for standing in this gap for us.  

 

I'll update you (a short one this time, I promise!) after I get home later this afternoon.

Thanks much,

K.

Past Updates - November 22

I have a new friend. I've only seen her once and have just spoken to her twice, but she has profoundly impacted me.  Her name is Sandy and she has Stage IV cancer and it's raging in her body.   During our second phone conversation a few weeks ago, she shared with me that she can feel new tumors popping up under her skin every day.  Through tears she said, "Kristie, I think I'm dying and I don't know what to do."

 

I was silent. I didn't have words. 

 

Oh the textbook answers are there.  They are. They are and I believe them to be true and wonderful and hope-filled.  And, thankfully, she believes them too.  She knows where she will be the moment her eyes close this side of heaven.   She also knows the God who promises to never leave us, no matter what. 

 

But, I didn't get the sense that she was asking me for a reminder of all the things that the Bible says about Heaven and God and Jesus.  I got the sense that she was asking me...

 

How do I know that it's time to realize that God's plan for my life is for me to die soon?  

How do I prepare my husband?

How do I tell my two, sweet little girls that Mommy's not going to be greeting them when they get off the bus? 

How can I not be afraid of the process of dying?

How can I possibly be okay with the pain and agony of watching my body break down before my eyes?

Do I spend my last days preparing for my death by getting my bills in order, my photo organized, my good-byes said or do I spend my last days continuing to focus on living?

How do I know what it will be really like and how can I make that be "enough" for me?

 

I was silent.  Oh, I mumbled some textbook things and tried not to be all "Pollyanna" on her; that's not real.   But, really, when all was said and done, I didn't know how to answer her questions.   I still don't know how to answer her questions.

 

For a couple of weeks I told myself that I didn't need to answer them because I'm not staring death in the face today.  Perhaps later.  But not today. 

 

Then two things happened. 

 

One is that I realized that....wait for it...I will die someday (the insights I have are astounding aren't they?!?!). Whether from cancer or from being a 95 year-old wrinkled-beyond-wrinkled lady who goes to sleep and doesn't wake up the next morning (but who has perky boobs, by the way), I will die some day.  The second thing was a friend sent me a link to an article a guy named John Piper wrote a few years ago on the eve of his surgery for prostate cancer.  The article is entitled, "Don't Waste Your Cancer"  In one section, here's what he writes:

"You will waste your cancer if you refuse to think about death. We will all die, if Jesus postpones his return. Not to think about what it will be like to leave this life and meet God is folly. Ecclesiastes 7:2 says, “It is better to go to the house of mourning [a funeral] than to go to the house of feasting, for this is the end of all mankind, and the living will lay it to heart.” How can you lay it to heart if you won’t think about it? Psalm 90:12 says, “Teach us to number our days that we may get a heart of wisdom.” Numbering your days means thinking about how few there are and that they will end. How will you get a heart of wisdom if you refuse to think about this? What a waste, if we do not think about death.

 

I know. I know.  Not exactly the "Happy Thanksgiving" message that you wanted to read.  Actually, not at all the "Happy Thanksgiving" message that I wanted to send.  So we're even.  But I can't get this off my mind.  And when I can't get something off my mind, I'm realizing that's one of the ways that I am being prompted to share with you. 

 

So...

Hmm....

Happy Thanksgiving?

Yes.  Happy Thanksgiving. 

 

I treasure you all. 

Kristie

 

P.S. Next Monday, I go in to Roswell for a CT scan and a bone scan and then get the results on Wednesday (12/1).  I would covet your prayers...I'm feeling pretty good...just a bit achy and a bit frustrated that I can't do much physical exercise without feeling as if I were run over by a small truck.  Thankfully, just a small truck!  

Past Updates - November 14

It's amazing how things can change within hours. 

 

On Thursday night, Chad and I (and, because of a babysitting snafu, the kids too) headed to Rochester so Chad could speak at a Young Life Fundraising banquet.   For those of you who don't know, it was through Young Life that I started on my faith journey.  I was 15 years old and, because some cute older boy had invited me, I went to my first Tuesday night YL Club - a crazy, fun, and still after all these years hard to describe, night in which high school kids are packed into somebody's living room or basement and do crazy skits, sing songs and get the opportunity to learn about God, Christ and what that all might mean for them.  

 

Each Tuesday at the end of Club, Mike O'Leary would stand up, open his Bible and share an account from the life of Christ. He did it in such a way that made the Bible come alive - which, to be honest, was a shocker to me because I had always thought the Bible was some boring, old, and not-at-all-applicable-to-my-life book that sat on coffee tables or bookshelves in people's homes.  I sit here with a little smile on my face when I think about how I used to view the Bible because, twenty-three years later, it still comes alive for me.  It's never meant to gather dust.  It's never meant to be showpiece on a coffee table that gets picked up only when tidying the house or if you need a flat surface to write on. 

 

So, as you can imagine, going to a YL banquet and seeing the current high school kids share both the fun/funny side of YL and the serious, change-your-life-forever side of YL, means something to me.  It's like coming home in a way.   It makes me remember both what it was like to navigate the challenges of high school and it helps me to see how faithful God has been to me over the past twenty-three years, since the moment when I looked up into the starry night's sky on a warm summer night in the Adirondack Mountains and told God that I needed Him and that I would commit my life to following Him.

 

It also reminds me of Laura and the way that God started a friendship between us that has now lasted almost 30 years.  I called her on our drive back to Buffalo.  In part to see how she was feeling as she had had some stomach pain a few days prior, but really more so to hear about the now-funny-but-not-at-that-time-funny story of how her 8-year old, Sarah, threw up at the nail salon that afternoon.  I laughed as she said to me, "You don't really realize how small those little cotton ball trash cans that sit on the manicurist's table are until you try to have your daughter throw up in one."    As we hung up, I told her that I'd call her after she and John returned from the wedding they were attending over the weekend in   Indianapolis. 

 

Instead, at 10:30 AM the next morning, John called from Laura's cell phone. Laura was in the Emergency Department with severe abdominal pains. He said he'd call back as soon as they knew more.  He called a couple of hours later and I packed my suitcase, hopped in the car, and drove back to Rochester praying that I would get there before they wheeled her into surgery to remove the tumors that were causing her so much pain.   The conversation between God and me during that drive was brutally honest.  As I drove I poured out my heart to Him, prayed fervently for my friend, told Him my fears, asked Him hard questions, praised His name, and sat quietly and listened.  I even sang worship songs so loudly that I probably violated the noise disturbance laws had I not been flying down the Thruway.  

 

From this point, it's hard to know what to tell you.  I could tell you that it was incredibly challenging to see her in so much pain.  I could also tell you that it was incredibly surprising the amount of laughter took place while we all waited for her to go in to surgery as well as while we waited for the surgeon to come out and tell us how the operation went.  And, of course, I could tell you, play-by-play, all that occurred from the time I got there in the early afternoon until when I left to go to my parents' house to sleep in the wee hours of the morning. 

 

But other than telling you that, thankfully, Laura's tumors were able to be removed without complications (don't tell her that I said that; after all, she's the girl with the 10" incision running down her belly!) and she's doing pretty well, I guess the main reason that I want to share all this with you is because of this:

 

You know what Laura and I did for about an hour in her hospital room on Saturday morning?  We had Bible Study.  Just two girls: one who looks sick and one who doesn't, but is.  Just two girls:  one who was dressed in jeans and a sweater and one who was wearing lovely hospital gowns with tubes running in all different directions.  Just two girls:  one who has three children who need their Mama and one who has two kiddos who need their Mommy.  What did we do the first time we had any time alone with each other?  She picked up her iPad. I went "old school" and opened an actual Bible and we took a look at two different passages in Scripture. 

 

We talked about 1 Samuel 1 &2 and what it was like to be Hannah, the barren woman who wanted desperately to see her dream of being a mom come to fruition.  A woman who lays her heart bare before Her God and tells Him her burden.  A woman who makes a costly vow: If You give me a baby, I'll give him back to You so he can serve You wholeheartedly his entire life.  A woman who prays joyfully, not on the day that she conceived and then gave birth to that baby boy, but rather on the day she fulfills her end of her vow and gives her son to live out the plan God intends for him - a plan that doesn't include Hannah being by his side every day to care for him and love on him. 

 

We talked about John 9 and the man born blind and how Jesus spit on dirt and placed mud on his eyes and told him to "Go and wash it in the Pool of Siloam so that you'll be able to see."  And the man did.  What was that like for him?  He didn't even know who Jesus was.  All he knew at the point was that Jesus was a man.  But he obeyed this Man's command and did something that seemed unbelievably foolish to those around him.  Wash mud off your eyes in a pool and then you'll see?  Really.  That's ridiculous.  At the command of some guy? You mean to tell me that you're placing your hopes of being able to be healed on this crazy suggestion?  Yes.  He did.  And, guess what?  He was.   Only later, through the course of time, did he come to a more complete understanding of Jesus - that He didn't come only to give this man sight, but He came to give him life.  We talked about how we have incomplete understanding of things, but we're still called to be obedient to what we know. Even if it seems crazy to those around us.

 

We sat across from one another - in some ways, like we've done time and time again over the years and, in other ways, unlike any other time in our long history together - and we read Scripture, shared what hit us, and marveled at the work of Our Lord...both back in the times that those words were originally written and in the freshness of today when those words were needed to encourage us and teach us and minister to us.

 

Does that surprise you?

 

It kinda surprised me.  I would have thought we would have done a lot more crying, a lot more "I don't understand", a lot more "oh my goodness, what lies ahead for us."   We didn't.  And it wasn't because we thought we shouldn't.  No, rather, it was because we were overwhelmed by the goodness of God:  His timing (one day later and she would have been on a plane or in a far away city dealing with this); the way He directed her to stop chemo last week (if she had had her treatment as planned, her cell counts would have been dangerously low to weather such an invasive surgery); His great love that is poured out from those who know Him; the changes that we're seeing in people we love.  

 

Sitting in Room 2857 at Rochester General Hospital on a sunny Saturday morning and we were overwhelmed by the goodness of God.  Impossible, but true. 

 

Needless to say, I am so thankful for 20 plus years ago...for a cute boy's willingness to invite me, for Mike O'Leary and his lovely wife Carol's willingness to invest in me, for a best friend's willingness to stick by me, for a Savior's willingness to die on a Cross for me.   

 

Good stuff, my friends. Good stuff.

 

Now....it's time for bed for this tired girl.  A peaceful evening to you all,

Much love,

K.