Update #86: Eye

Well… I learned something new yesterday that I wish I didn't know:  you can get breast cancer in the eye!  

Apparently there are two small cancerous lesions on the back of my eye that are, most likely, metastatic breast cancer lesions.  I'm not sure what the treatment plan will be at this point for that, but I know that today at 10 I head off to chemo to start a new medication and I will connect with my doctor sometime this afternoon.

When I came home yesterday and told Emilie that it is, in fact, the cancer that's causing problems in my eye.  Her response was hilarious.  

Emilie: I didn't want to tell you, but I thought so.

Me: Why did you think so, Em?

Emilie: Well because you have cancer in your bones and in your lungs so I figured it had to be cancer in your eye too.  Ya know; 3 strikes and you're out.

[Slight pause] 

Emilie: Hey Mom?  What's for dinner?

I totally laughed. I'm not sure why, but I thought that that was just about the best response I could have gotten from her.  Such a matter-of-fact acknowledgement of the pervasiveness of this disease.  Yet, such a glimpse into the fact that, because we've been dealing with this for so long, it's just a part of our life. 

And then…a few hours later.  I wasn't laughing any more.  After a very frustrating evening trying to help Daniel with difficult homework – with eyes that really weren't working because they were dilated from the trip to the neuro-opthlamologist – I finally passed the homework baton off to Chad andI went upstairs and into my closet, laid down under my hanging clothes and sobbed like a baby.  Having a heart-broken tantrum, in fact.  

I told you this would be a messy journey!

From laughing  at 4 PM and being "okay" with this new news.
To sobbing at 7 PM and being anything but okay with it.
Nutty, right?

More later my friends,

K.

P.S. Chemo was long, but went easily today.  I will meet with a Radiation Oncologist tomorrow at 1 PM to hear a treatment option. 

Update #85: The Ugh Revisited

[Do you like the new subtitle I've added to the Update #??? :) ]

So…here's what I know medically so far:  I will start a new chemo drug on Thursday morning.  I'll get it once every three weeks and the potential side effects are what you would expect in a chemo drug. How exactly it'll impact me is yet to be seen.   Because this drug is harder on your heart,  I'm getting an EKG today to get a baseline on my heart health.  I don't expect there to be any issues, but I guess I need to leave room for a 5th Ugh!  As for my eye…I learned today that breast cancer can metastasize to your eye.  Oh how fun. I will meet with a neuro-opthalmologist on Wednesday at noon to have a better idea if cancer is causing my eye problem or something else.  

Breathe. 

Breathe.

Breathe.

On Sunday we were at church. We're all standing singing a song. A great song. A song I love.  And as I'm standing there, my body is starting to tell me that it's getting tired and wants me to sit down.  

"No, I can't do that.  I want to stand and sing.  And besides you're supposed to stand and sing.  If I sit down, what will people think?"  

As I"m having this conversation with myself, all of  a sudden I realized that I let something so important slip to the background.   

This church is my family.

And this sanctuary is like my family room.

If I were at home with my family in my family room and I felt the need to sit down, I'd do it in a heartbeat without apology.  What's more is that I wouldn't even think twice about asking someone to get me a blanket so that I could snuggle under it and take a nap.  

While I wouldn't expect someone to fetch me a blanket in the middle of the morning service(!), I was reminded so clearly that that's what church is supposed to be: a family.  A family that cares for one another and loves one another and sets aside "what we should do" for "what we need to do".  It made me fall in love with my church all over again.  And it made me wonder if someone today needs to know that church isn't supposed to be the place that you wear your "Sunday Best" and put on your "best face" and follow a program to know how much longer it will be.  A place you just walk in and walk out.  I can promise you that Jesus would run far, far away from that definition and beg and plead for us to return to what "church" was in the years while He walked this earth and in the 1st century following His resurrection. 

He would tell us to 

Just come. 

As you are. As you really are.  

Like a little child.  

Loving one another.  

Walking with one another.  

Teaching each other.

Encouraging each other.

Giving to one another.  

Laughing and crying with one another.

Praising His name together – whether that's done standing up or sitting down or laying flat on your back because all your eyes want to do is close.

That's church.

How I pray you thirst for it. 

How I pray you experience it.

How I pray you participate in it. 

How I pray you treasure it.

Yes, my friends, this journey is super hard.  Yet, I know that I don't walk it alone and that lifts my heart.

Be back in touch on Wednesday or Thursday.

Love to you

Kristie

Update #84

Well….I wish I had easier news to share.  The truth is that I don't.  

In fact, I have a "3 ugh" news report for you on this beautiful snowy night in Orchard Park.

I went yesterday to Roswell for what I thought was going to be a quick appointment with my doctor to review blood work plus pick a date after the New Year for a set of follow-up scans.  

If only that actually happened.  

Instead, when I shared that I was out of breath from doing fairly routine activities (due to what I thought was a low hemoglobin count) I was given a few different tests.  Let's just say that I failed them all and that won me the prize of having a special CT to check for a pulmonary embolism.  Good news is that I don't have that.  The hard news is that the cancer continues to progress in both my lungs and liver.  And, my shortness of breath is not due to the low hemoglobin count as much as it due to fluid build-up in my left lung from an increased tumor load.  

Ugh. 

So…on Friday I will be going in at 8 AM for a procedure to drain that fluid from my lung. Then on Monday I will meet with my doctor to review the next options for chemo (thankfully, there are several options remaining) that I will start either Monday or Wednesday of next week.  The side effects of those chemo options are unknown to me at this point, but I'm not anticipating that they will be a walk in the park. 

Ugh.

This has been a hard one.  Hard largely because I wasn't expecting that news.  While I know my body isn't doing great, I thought I understood the cause of that to be from the effects of the chemo, not due to the effects of the cancer.  So, yesterday was a very teary day for me and for Chad.  And, while it wasn't teary for the kids, it was difficult for them to hear as well.  

But wait!  Just like a good informercial…I'm not done yet!  It's not just a "2 ugh" report; it's a "3 ugh" one, remember?  

So…I thought I would send out this update early this morning, but instead, I awoke last night not feeling good at all. Headache and upset stomach.  Hmm…I really must be STRESSED about this new information, I thought.  And, then, about 20 minutes after I awoke feeling crummy, a little boy entered our room and, in tears, complained that his stomach and head were hurting him and he wanted us to set up a makeshift bed for him on the bathroom floor.   Yep; you guessed it…. The STOMACH BUG!  So, rather than taking advantage of my last day of "freedom" to become better prepared for Christmas, I spent the day next to Daniel on the couch.  

Ugh. 

A 3 Ugh report?!? I don't even want 1 ugh.  But I have to have THREE of them to tell you about?!?

I want to be the girl with the No Ugh story.

With only victories.

With only easy stuff

With only things that, if you saw this on Facebook, it would take you 0.10 seconds to click the "Like" button.

Don't we all want that, at least a little bit anyway, for our own lives? 

As I drove into Roswell yesterday, I was listening to a CD that I made last spring for the girls who are in my Tuesday morning Bible Study.  There's a song by Bethany Dillon on it called "Hallelujah".  Here's a link to it and I would encourage you to listen to it. https://www.youtube.com/watch?v=Y-W7Md6mv74

Here's the first part of the chorus:  

"Hallelujah. Hallelujah.  Whatever's in front of me, help me to sing hallelujah."

You know what my prayer was to God right after I pulled into the parking spot and the song stopped there?

"Please don't let this song be a preparation for any news that I hear today."

Does that sound like the prayer of a superhero?

Nope.

What is that prayer?  It's the honest prayer of a girl who has been walking this road for a long time and knows what it's like to hear easy news and what it's like to hear hard news. And who knows which news she'd take each and every day if it was her choice.  

Several hours later, when I got back into my van after hearing this hard news, the song wasn't done yet.  I will admit that I turned it off as soon as I realized that it was still on, but not before the second part of the chorus came on.  

While it  may seem similar to the first, it's totally different.  Totally.

Here's the second part: "Hallelujah. Hallelujah.  Whatever's in front of me, I'll choose to sing hallelujah."

Did you catch it?

The first part asks God to work in our minds and hearts and spirits to empower us to face each and every circumstance with the ability and the desire to praise Him.

The second part tells God that you'll cooperate with Him and you'll actually do it.

The first is the recognition that, no matter what news is heard, no matter what circumstance comes into our lives, there is always something – many, many, many things in fact - to praise Him for.  

The second is the commitment to actually do it…to willingly trade all the frustrations, sadness and fears for the hope and the joy and the peace released by trusting in those He promises.

The first could be considered an act of desperation. 

The second, though, well…that's a choice of the will.

When Laura and I were first diagnosed years ago, we both made a commitment to praise Him no matter what.

In some respects it was a silly commitment.  

We had no idea what depths of circumstances He would have our feet travel and what it would take to utter those words of praise and trust. 

But, over those years, here's what we both learned: The place of Praise – which really is the place of Trust – is the only place we want to live.

We may visit Sadness.  

We may visit Frustration. 

We may visit Anger. 

We may visit Pulling Back.

But we don't have to live in any of those places.

Those are not our home.

So, tonight, as my stomach is churning and I'm praying for the stomach bug to flee quickly so that I'm well enough for my lung to be drained tomorrow (see what I mean…how ridiculous that I'm picking a thoracentesis  over the stomach bug!!)… I'm making my way Home.  I'm stopping the tour of those yucky places and returning Home.  To the place where Rest. Peace. Joy. Purpose. Hope. And Life live.  And I hope I'm not the only one. I hope that if you've been visiting places that have left you empty and dry, that you're headed Home too.   

With love and a humble request for prayers for my family and me, 

Kristie  

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