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  

. 

Update #83

Realized that I didn't let you all know (at least via email!) about the results of my scans yesterday.  Oops. Sorry. 

Easy day!  The scans show stability and/or improvement. This means that the current chemo drug I'm on will be what I continue with for the time being. 

So…tomorrow I go for Part 1 of Round #3 of chemo. 

So far, the side effects of this drug continue to be MUCH easier than those of the first drug I was on this summer.  

While I don't feel great and while eating is still hard, I recognize myself again.  

Well…I guess I really don't recognize myself if I'm talking about what I see in the mirror. 

That girl staring back at me is a bit scarier than the girl who I remember myself to be.  

But, when I think of how I'm not just laying on the couch all day or feeling crappy all day… 

THAT feels much more like my old self.  

So…thanks for your prayers and your encouragement. This would be so much more difficult without you…

Love to you all,

K. 

Update #82

Easy news today at Roswell.

Phew. 

The lumbar puncture came back negative which means that there is no cancer in my brain!  

And my tumor markers have dropped for the first time in months and months!

What does this mean, you ask?

The negative lumbar puncture most likely means that the buzzing sound in my head (tinnitus) isn't due to lesions in my brain.  However, we still don't know exactly what's causing it. My hypothesis is that it's due to the chemo drug because it's gotten better these last two days (since this past week has been my week off from chemo).  However, given this isn't a commonly reported side effect of the drug, my doctor isn't ready to firmly draw that conclusion.  

The tumor marker drop most likely means that this new chemo drug is having a positive effect on the cancer in my body.  I'm getting scanned in 3 weeks to have a more definitive picture as to what's going on, but for now, I'll totally rejoice that, not only has this new chemo been easier on my body due to the lowered nausea, it also seems to be at least somewhat effective. 

So…within this hard road of a cancer diagnosis, today was way easier than it could have been and I am so thankful.  

I"m thankful for your prayers. 

I'm thankful for your words of encouragement. 

I'm thankful for the meals. 

I'm thankful for the flowers and little gifts.

And I'm beyond thankful for the - not one, not two, but THREE! -  happy dances/kick line videos that you sent my way today to show how excited you were to hear of my easy news! :)

Love to you all,

K. 

Update #81 - Part A and B

Part A From This Morning:

Going to Roswell at 10 AM today for a brain MRI. Since Tuesday, I've been having buzzing in my head (like ringing in the ears).  Could be a side effect of the new chemo.  Could be brain lesions. Could be something inconsequential.  Yes, if you're thinking that's a wide range of explanations, you would be correct!  I will be called later today with the results and will be back in touch when I do. 

Thanks all,

K.

Part B From This Afternoon:

Well… 

It's still a mystery.

My MRI is relatively unchanged from my last one a few weeks ago. However, there's some potential that there's cancer in the lining of my brain near my ear canal.  It's very inconclusive.  So, the neuro-radiologist and my oncologist recommend that I have a lumbar tap to extract the fluid to see if there are cancer cells present.  If there are…well...hat's a really hard thing.  If there are not, then my oncologist really doesn't know why I'm having these symptoms and we'll have to cross that bridge (PLEASE LET ME HAVE TO CROSS THAT BRIDGE!) when we get there. 

So…next step is a lumbar puncture on Thursday morning at 8:30.  I'm just getting poked and prodded like crazy, aren't it? And I thought my week would be a quiet week…

My sister's church in Pittsburgh sent me this awesome hand-written card this past week.  In it, they copied for me an excerpt from a devotional called, Our Daily Bread.  It said, "God becomes a reality when He becomes a necessity."  

God became a reality for me when I was just 16 years old.  When I  - with all my smarts and capabilities - thought that I had life all figured out and then I realized that I really didn't.  When I started to understand that as capable as I was, I just wasn't that good.  Wasn't that powerful. Wasn't that smart.  I needed someone far, far greater than I in order for my life to make sense.  Christ became real to me then because I discovered that I needed Him. 

And that hasn't changed.  

26 years later. 

That hasn't changed.

I am reminded of my great need for Him daily.  

Minute by minute. 

Waiting for the test. Waiting for the phone call. Processing the conversations with doctors. Looking into the faces of my sweet children as I contemplate what to tell them.

What reminds you?  

What reminds you of your need for God?  

What circumstance or relationship difficulty or internal battle presses in on you to gently or loudly tap on your shoulder, reminding you that you are ill-equipped on your own to thrive in your own journey? 

How I hope it's something.

Not because I want you to be facing hard things.  Not. At. All.

But, rather, it's because I am convinced that what we think about God is one of – if not THE - most important things about us. And sometimes we need the unpleasant pressure of hard things to drive away the distractions and the chasings of the wind in order to see clearly our need for the One who created us, who loves us and who has called us to be His own.  

He becomes a reality when He becomes a necessity. 

Love it. 

I'll be back in touch on Thursday or Friday to let you know if the mystery is solved…

Much love to you

K.

Update #80

Yesterday was my mom's birthday, Chad's mom's birthday, my good friend's birthday and my cousin's birthday (and perhaps even someone else to whom this email is going).

How I wish I had some celebratory news to share, especially with them.

Sadly, that isn't the case.

Despite the chemo treatments I've been on, the cancer continues to progress. [Yes, that means all the nausea this past summer was for naught! A bit frustrating, but I understand that that's just part of the process of dealing with this disease.]

So as scheduled, I will have a chest port installed today around 11 AM and then on Friday I will start a new chemo drug.  This one is given two weeks on, one week off.  To ensure that this medicine is having a positive impact, I will have repeat scans done in just 6 weeks, rather than the typical 3 months.

Oh goody.  

This is so much fun. 

Actually, I'm doing ok. I wasn't blind-sided by this news and that made it a lot easier to hear.  If I had thought that my body was responding beautifully and then heard what I heard yesterday, I would have had a much harder time accepting this.  If my chemo treatments thus far had been a walk in the park without side effects, then I would be scared and sad to move on to a new drug. And, most importantly, if I thought my life was only about living the most number of days, then I would be absolutely traumatized that this news - without God's intervention  to halt and eradicate the cancer in my body - would drastically shorten those days. 

No, these results weren't easy to hear.  Please don't read the above paragraph and think that there were no tears shed, no worries that crossed minds, no apprehensions about the yuckiness of cancer progression.  There were.   But, I also don't want you to think that we measure the goodness of our lives – and more importantly, the goodness of God -  based off of scan results.  I've had enough scan results – both "good" and "bad" results – to tell you that they cannot fully satisfy you (the "good ones), nor can they fully destroy you (the "bad" ones).  

Ooops…just looked at the time.  Gotta go. Off to Roswell.

Hey, at least this time this surgery ADDS something to my body, rather than takes something away from it!  :)

Much love and thankfulness for you,

K.