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.