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