Update #88: The Longest Day in History Ends with an Ouch!

I seriously think today wins the award for the longest day of my life. If it doesn't actually win it, it is a top contender.

Started at 7:23 am by Chad dropping me off at the chemo infusion center and spending FIVE HOURS there. Easy news is that my mom drove in from Rochester to be with me and the easy news is that my cell counts were high enough to get treatment. Hard news was that, well...I got CHEMO. Bleech.

Then, because of how long chemo took, I had to be rescheduled for an appointment with a retinal specialist from so it couldn't start until 12:45 pm.

Guess how long we were there?

5 HOURS!

Not only did I have to rehash my entire breast cancer story (which always has an element of depression in it and always elicits stares of disbelief and pity from the medical personnel who are recording it), I had to take multiple vision tests which I have always, always found bizarrely stressful. "Can you see better with A or B? With option 1 or 2?  A or B? 1 or 2?"  I don't know. Argh!

Then I waited.

Next, I had to have my eyes dilated to the point where the guy who then looked at them - and who looks at hundreds of dilated eyes each week - says, "Wow. They REALLY dilated your eyes. I can't even see your irises with this incredibly powerful camera that I use every day, all day to take pictures of dilated eyes."

Then I waited.

Next, I had to have fluorescent dye injected in my hand which immediately traveled to my eyes so that said photographer could take 12 minutes of photographs, all the while  feeling like I've been asked to place my eyes against halogen car headlights on brights. And not blink. Unless "told so". Try that one.

Then I waited. Some more. And more.

Then...oh, I am so not done with my story... I finally talk to the retinal specialist who shows me all my images and says...

Easy news: "the edema in your left eye is showing strong improvement. It's actually totally gone in one place and well-reduced in the other place."

Hard News: "But that's actually, surprisingly, not causing your distortion in your vision. That's a now structural problem with the placement of your photo receptor rods (as a result of the lesions to your eye) and I can't fix that." WHAT?? Ugh.

Not easy, not hard news: "BUT because the risk of me harming you is incredibly low and the possibility that I can speed up the edema totally going away, I want to give you a shot of Avastin in your eye. You won't see better but it may actually help your eye in the long run."

So...I then had the joy of having my eye: (1) numbed; (2) stabbed with a needle - that felt like he was going to pluck my eye from it's socket like when you'd put an olive on a toothpick. It hurt like crazy!; (3)  covered with a gooey gel, (4) rubbed with an ultrasound wand, and (5) traumatized by black dots flying at crazy speeds all throughout my vision to the point I thought I was hallucinating.

AND, AND, AND, to top all this off....

Upon peeing after it was over, I realized the hard way that the fluorescent dye travels quickly thru your body and turns your pee, "oh-my-gosh-a-highlighter-exploded-in-my-bladder-and-I'm-apparently-now-eliminating-it" yellow!  I have NEVER seen anything like that!

Arrived home at 6:20. Only to immediately go into homework mode with Daniel. (But, did I mention I can't see anything because you still can't see my irises? Try diagramming sentences without being able to see unless your eyes are 3" from your kid's desk. Yeah, usually not fun to ever diagram a sentence, certainly not fun under these considerations!)

And FINALLY had a two hour "13 year old girl - to mom" talk (which I treasure and was so thankful for) standing over the kitchen island and assuring her all the while that my eyes were pouring out liquid not because I was crying, but rather, as the byproduct of my "not too bad, but tiring day."

Yep. That's a long day.

Super, super long.

So...all that to say...hearing that my vision will not improve was very, very hard to hear. This has had a huge impact on my life,  and I now understand that I will have to learn how to adjust to it, rather than it having to learn the lesson I wanted it to learn: SHAPE UP OR SHIP OUT.

Nope. Didn't get to say that.

Don't like that I didn't get to say that.

Will probably cry in the coming day or two over this new reality for me.

But for now...

My bed is totally calling my name.

"I hear you, bed. I'm a coming."

Thanks for letting me complain.

I feel much better :)

K.

Update #87: New Chemo

Well… It's happening. 

I'm here again. 

Same chemo chair.

New chemo drugs.

Ugh. 

These past few weeks have brought lots of changes to my body and, as a result, lots of visits to Roswell.  Not to belabor anything but in an attempt to be honest with you, here are some of the things I've experienced and heard and lived through these past three weeks: 

Radiation daily to my left eye – 12 days

Radiation daily to my lower spine – 5 days

Radiation induced vomiting (every 20 minutes on our Rich Family Christmas morning)

CT and bone scans, x-rays, and blood work.

Vision issues in my left eye causing frustration to do simple tasks as well as nausea.

Tumor markers that are fairly rapidly escalating. 

Reduction in my weight.   I'm down about 35 lbs since June. 

New meds at home to manage the annoying cough, the bone pain in my hip, the shortness of breath. 

I probably could go on, but I'll spare us further yuckiness.

You can thank me later.

And, I totally get if you just want to delete this or decide to read it later when it might be at an easier time for you. 

I also totally get it if you read all that and your brain jumps ahead to what you are thinking is probably awaiting me.

And if you're thinking  "hospice" or "palliative care" or any of those types of phrases, you must have been eavesdropping on my recent conversations with my doctor. 

Those terms have either been directly mentioned or certainly implied.

As she has said, "We're not at the Hospice door yet, but…"

Hmm.

So what does THAT feel like?

Not sure.

It's definitely not easy.

It's definitely not fun.

It's definitely not light-hearted.

And it's definitely not what I would choose.

No, definitely not that.

But, thankfully, the physical reality of my situation is not the only voice that's speaking into my total reality. 

There is a spiritual reality that is speaking just as loudly – if not much more loudly - than my physical reality.

And it's a welcomed, peace-filling, awe-inspiring voice.

It doesn't erase  - or, like a good mathematical expression, negate - the physical reality, but rather it puts it into a beyond-important perspective.

As I find myself dealing with more effects of this unyielding disease, I find myself surprised by the amount of hope Christ is pouring out.

And astounded by the unleashing of His voice.

And amazed by the continued sacrificial love of His people toward my family and me.

And it's good.

In the midst of the hard, THAT is good.

So very good.

And I am thankful.

So, again, my friends…thanks for walking this hard journey alongside of us.  You encourage me to endure and be patient. To wait. To watch. To trust. 

Couldn't do this without you. 

So glad I don't have to.

Suckers.

:)

My love to you,

K.

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 #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.

Update #76

Monday, I had the incredible privilege of being in the delivery room when Danielle and Ryan welcomed their second little boy, Hudson John, into this world.  

How thankful I am for that great joy. 

Tuesday, I had a liver biopsy that went relatively easily.  Minimal to no lasting discomfort.  No scarring. Almost no impact to my life.  

How thankful I am for that unexpected gift.

Today, was chemo.  It was physically fairly easy (other than the Benadryl drip which made me light-headed, a touch queasy and super tired.)  

How thankful I am for that aspect of today.

And of course, I am thankful for others things from today – from medical technologies, to a great husband, to family and friends who love us well - but, even with that thankfulness in mind, the rest of my time there today was anguishing.    

I cried after the nurse put the line in and came back with all the tubing that I needed for the infusion.

I cried after the pre-meds were administered and she came to hook up the chemo agent (Taxol).

Tears streaming down my face and quiet shudders so to not disturb the other patients in the infusion room.

And then, when it was over and we got into the car, the "crying like a baby" turned into "screaming like a toddler."  

In fact, you could say that I had a full-fledged temper tantrum.

[Aren't you proud of me that I waited to do that until I got into the car? :) ]

You see, despite knowing truths about God's power and His never-leaving presence…despite having experienced His tenderness…despite trusting that death is just a gateway to eternal life…despite all those things…I got mad.  (I almost said frustrated, but in reality, that's a cop-out word. The truth is I got downright angry.)

I got mad that, three weeks out of each month, I will have to do this again and again.

I got mad that the caustic nature of chemo will quickly force me into getting a medi-port.

I got mad that soon I will be balding/bald.

I got mad that I'm dumping all these chemicals into my body, after I've been so careful to put good, whole, clean, non-GMO, organic, foods into it.

I got mad that the alternative treatments that I have been doing for the past few years haven't seemed to make an impact.

I just got mad.

And, boy, did I let God (and, probably, all the cars that drove by and saw a screaming lunatic and her crying husband!) know it.

What do you do when you get mad?

Do you keep it inside and stuff it and pretend everything's fine?

Do you let it out, but direct it at the wrong person or thing?

Or do you let it out and bring it before the only one who can do something about it?

Here's what I know: God doesn't deserve my anger. 

But, even so, He willingly lets me pour out my honest – sometimes mad - heart to Him.

How do I know that He's willing to let us to do that?

Because of Psalm 88. 

Psalm 88 is all about being in a situation you don't understand and don’t like and telling God about it - even going so far to accuse God both of being who He isn't and doing what He doesn't.

[If you're resonating with what I'm saying today take a peek at Psalm 88 in two different translations (https://new.biblegateway.com/passage/?search=psalm%2088&version=NIV;MSG)]

You see, just Psalm 88's INCLUSION in Scripture,  amazes me.

God doesn't deserve to be told things like the Psalmist told God in Psalm 88. 

Yet God includes it in the Bible.

Why would He do that?  Why would He allow those unfair, unfounded, accusatory words to be included in His word?

Because He knows us. He knows that sometimes our roads are so hard that we wrongly see Him in it.  

And because He loves us.  He loves us so much that He doesn't just TOLERATE us pouring out our hurt hearts to Him, he PROVIDES us the words to us (like those Psalm 88). 

And because He knows we don't want to stay mad.  We want to move past it. We want to return to a place of contented trust.  

So He helps us get it OUT so that we can get His truths IN.

That's why I love God.

Because the truth is I had a Psalm 88 kind of morning.

And, in His great mercy and deep love, He has allowed me to pour out screaming feelings so that He can move me past Psalm 88 and into Psalm 100:

Shout for joy to the Lord, all the earth.

Worship the Lord with gladness;

Come before Him with joyful songs.

Know that the Lord is God.

Is is He who made us, and we are His;

We are His people, the sheep of His pasture.

Enter His gates with thanksgiving

And His courts with praise;

Give thanks to Him and praise His name.

For the Lord is good and His love endures forever;

His faithfulness continues through all generations.

I don't know what in your life has you angry.

I don't what what you're doing about it.

But let me encourage you that your Heavenly Father longs to bend His ear to hear your honest heart and longs to open His mouth to whisper His soothing truths in your ear.

To restore you.

To set your feet on solid ground.

To return joy to your heart.

May we all hear Him.

And may it matter.

Love to you.

K.

Update #74

Heard some pretty hard news at Roswell today.  

Scans show that there is now liver and lung involvement as well as new lesions in different bones.  After an MRI on Friday evening, I will meet with my doctor on Tuesday morning to finalize chemo infusion plans and then I will start chemo Wednesday.   It will most likely be a weekly chemo (on for 3 weeks and off for one).  It will most likely be an agent that causes me to be bald, although the final determination of that won't be made until later after my doctor, who was out sick today,  weighs in on the final plans. 

What makes all that even harder is that my bones are really bothering me.  So I will be starting prescription pain meds tonight (and perhaps during the day, depending on if they interfere with my ability to parent). 

Ugh. 

I'm being faced with doing two things I have never wanted to do - Rx pain meds and infusion chemo – and I'm adjusting to that reality.  I do okay until I think of my kiddos and then my eyes just overflow.  

This will be very hard on them. And I can't make it go away.  

I can parent them through this. 

I can point them to the only One who provides a real and lasting hope. 

I can surround them with people who will love them and who will willingly pick up the slack for me.  

But I can't tell them the things that I long to be able to tell them.  

I was flying home the other day and just struggling with the fact that my body was feeling worse and knowing that I was going to get my results back today.  I had moved some songs from my iCloud to my iPhone so I could listen to some music on the flight.  I made a mistake and moved an entire album by Casting Crowns (one that, unbeknownst to me,  Chad had just purchased during his marathon training) and this song came one.  It's called, "Just Be Held"  (https://www.youtube.com/watch?v=tIZitK6_IMQ).  It resonated so deeply with me, especially one line. And that one line has run through my head incessantly since that moment. 

"If your eyes are on are the storm, you wonder if I love you still. 

But if your eyes are on the Cross, you know I always have and I always will."

Oh my goodness, does that resonate. 

When I look at the storm, I wonder why He doesn't stop it for me when He has demonstrated a great ability to stop storms, part waters, restore life, heal broken bodies, bind up bleeding hearts, soothe troubled spirits. When I look at the storm, I do struggle with feelings of being unloved – or not loved enough – by Him.  

But, when I look at Christ and the Message of the Cross, those doubts fade away.  The Message of The Cross is all about a radically loving God who does the unimaginable so that we can be forever reconciled to God.  Who does the unimaginable for one reason only: because He loves us. 

The Storm.

The Cross.

As I've said before, this has been and continues to be a battle of where my eyes rest.

This new chapter I'll be embarking on doesn't change that. 

It's still the same battle.

The battle is not with cancer.

It's never been with cancer. 

Cancer is just the backdrop for the battle.

The real battle is for my eyes.

And, I can guarantee you that any battle you may be facing right now is first and foremost about your eyes too.

Do we keep our eyes on the Storm or do we keep our eyes on the Cross?

So, my friends, I thank you for the words of encouragement you've already sent my way and I thank you, in advance, for being willing to continue to walk out this journey with our family. I know it's tough.   May we all see Christ more clearly as we walk it out and may that infuse us all with a joy, peace and hope that are louder and deeper than the sounds of the storm.  And may you have plenty of Kleenex on hand if you see me and I cry like a baby! 

Love to you

K.