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 #72

From this morning...

Headed to the dentist this morning for (most likely) a crown.

Followed up by a visit to Roswell for a blood draw, a jab in the belly, tumor marker results and a visit with my doctor.

Even though it involves a crown, it's not exactly a day that little girls dream about one day having, right? :)

I would love your prayers.

Thanks all. 

Back in touch later today….

K.

From this evening...

So I didn't get a crown.

In fact, I didn't have to have really any dental work done.  Perhaps down the road, but not today. 

What incredibly, surprisingly easy news.  

Totally deserving of a loud yippee! 

The news from Roswell was no where near as surprising, nor easy for that matter.

Tumor markers continue to climb and scans are definitely required.  

So on 6/2 I'll be getting scans and then on 6/11 I'll hear the results of those scans and treatment plans will be discussed.

Until then, I'm still on my "extreme-weight-gain-as-the-major-side-effect" drug.  (Please don't even think about putting a "yippee" to that one. Not today. Probably not ever.  Ugh.) 

The great news is that I feel pretty good.  Any hip pain is generally very manageable by Advil so I'm able to fully participate in life 

And that is something for which I am superbly thankful.

Although I generally don't like to only give medical updates, the truth is that I'm abdicating my parenting responsibilities right now in order to send off the quick update to you, so…. any longer update will have to with until later. I know; don't cry. :)

You guys are awesome. 

I truly count it one of my greatest privileges to be loved well by you.

Kristie

Update #69

In 7 days, we'll be in Florida with my family.

Ahhh…I can't wait.

In case anyone has a moment of feeling jealousy over that, let me help you get over that real quick:

What lies between now and 7 days from now is daily radiation at Roswell. 

I'm pretty confident that I just cured you of any ounce of jealously you may have had, right?

Yeah, I would think so! :)

So…the medical update from last week is that my doctor is willing to try one last "Hail Mary Pass" on non-infusion based treatment.  For the next two months, I'll be taking an older, slightly different hormone-based therapy.  In two months I'll be scanned again and, if the disease is still progressing, then it's infusion chemo for me.  In addition to these daily pills, today I started the first of 10 radiation treatments to my right hip in order to both reduce pain and attempt to slow localized progression of disease.  

Thankfully, the side effects of both these things (new therapy & radiation) are fairly inconsequential.  

Oh, wait. Forgot to mention that "excessive weight gain" is the most common side effect of the new drug I'm taking.

Not just weight gain, but excessive weight gain.  

Oh goodie.  Just what I've always wanted. 

So….how am I doing with all this?

I thought I was handling all this pretty well actually.  

That is, until yesterday, when I was by myself on my way home from Roswell.  

I was driving in the right-hand lane of I-190 and was behind a car that was driving 56 MPH.  And, sure enough, in the lane right next to me, there was an 18-wheeler driving 56 .1 MPH. 

So, there I was.  Stuck behind these ridiculously slow vehicles 

(Yes, I know, the speed limit is 55 MPH, so technically those vehicles…yeah, yeah, yeah…blah, blah, blah).  

About 15 seconds after realizing my unfortunate predicament, I (without warning, and totally surprising myself) started to scream my head off at the ridiculousness of their slowness.  

I mean, I was SCREAMING at those cars.  

My body hunched over my steering wheel, my fists pounding the seat, my eyes spilling over with tears, my face red.  My voice hoarse.

As I screamed, "Get. Out. Of. My. Way."  

Can you picture this craziness?

I was seriously off my rocker.

I was just so so MAD. 

I was just so mad at these stupid cars that were blocking my path.  

That were slowing me down. 

That were taking away my choice.

That were preventing me from going at the pace I want to go.

So mad.

Okay, so who has figured out that I wasn't really mad at those cars?

That, perhaps, my crazy anger wasn't really about those two law-abiding drivers? 

Yeah, it took me about 30 seconds to realize that too.

The truth is that cancer sucks and going to Roswell is difficult.

It can feel as if I'm behind obstacles that I cannot move.

It can feel as if I don't have the choices I want.

It can feel as if I can take a different path at the pace that I want to take it. 

And that's hard.

And it's hard working through that.

But God is good and He's got this. He's at work. He knows the path and He knows the pace.  And He's trustworthy.

So thankful for that.

So…to wrap this up…As I continue to work through this "slight anger problem", you may just want  to be on the look out for a very dirty gray Honda Odyssey min-van with a blond, pony-tailed driver and stay far, far away!  :)

Love to you all,

Kristie

End of Day Update...

Phew. That was a  LONG day…

Bottom line:  Treatment will be changing, but not sure yet what it will be.

My doctor is doing some research on some non-traditional treatment options to see if she'd recommend any of them more than she'd recommend infusion chemo. I'm also going to be meeting with Genetics (find out tomorrow when that appointment will be).  In addition, I'll be meeting with radiation oncology to see what the recommendation would be re: treating the the spot on my right hip.

How am I, you ask?

Actually okay.

Kinda strange, but Monday was much harder than today.  

My list of complaints was truly long on Monday.

But my airing of them – and then my follow-up visit to Hamburg Town Court and seeing the grander truths – truly did help put my feet back on solid ground.

I'm exhausted, but I'm okay.

No tears shed today.

AND…not even a lump in my throat.

Perhaps that will come later tonight as I lay my head on my pillow and have a moment to breathe and process all this…but, for now, I'm okay.

Thanks again for loving me well today.  You are a source of much needed, and much appreciated, encouragement.

K.

Update #65

Anyone want to guess what I heard today?

Ding. Ding. Ding.  

You got it: wait and see.

For at least a week, more likely for four weeks.

My tumor markers continue to be above normal (as they have been for many months), but are up slightly from last time.  My scans showed slight disease progression, but only in one area of my bones.  The rest of my scans showed that all other bone lesions are stable and that no other organs appear to be affected.  Because the new lesion on my bone is so small and because this is the first time my markers have gone up since switching to this treatment, the PA felt that it's too early to make a treatment change.  However, since my doctor is out of the office for a family emergency, she wants to consult with her via phone or with the other MD to make sure they agree.  Given how my Dr. has made decisions in the past, I think she will agree.  

If she does agree, I will continue on with this treatment and will go back again for blood work on January 8th.  

Phew.  A "yee-haw" and a "yikes" all in one.  

Mixed bag results are both so fabulous and so not-so-fabulous, aren't they?   

Thanks for your prayers.  How I am grateful for you.  For all the ways you stand in the gap for, and encourage, and love my family and me. You are so important to me.

If I'm not back in touch beforehand, have a wonderful Christmas…

Love to you,

Kristie

BTW - sounds like the "loudest vs. deepest desire" stuff has made an impact on more than just me.  I appreciate the many emails/posts/messages you've sent about it.  Good stuff. Thanks, Tim Keller! :)

Update #49 & #50

Forgot to post Update #49 yesterday
Had my blood draw this morning. Just got the results: Tumor markers up above normal. This does not surprise me - although please don't think that that means I didn't cry a bit when hearing my suspicions confirmed - as my left leg has been causing me some discomfort. Meet with the doctor tomorrow morning at 8:45. I'll keep you posted.


Update #50 from today
Wait and See.
No treatment plan change.
Follow-up in 4 weeks.

After you read those words, I bet you're wondering if I, by accident, sent you last month's update instead of this month's. Because it sounds sort of familiar, right? Are you wondering if my doctor isn't doing her job? Are you wondering if I'm sticking my head in the sand? Or, are you smiling because you're thankful that Cue-Ball Kristie (you know, the bald version of this blonde self) doesn't have to been seen quite yet?

I hope by now, you understand that a journey with a cancer diagnosis - at least a Stage 4 cancer diagnosis - is neither a straight-line or a clear 100%-we-absolutely-know kind of a thing. It's not. It's a combination of cold hard researched science and a plethora of still-remaining research questions. It's a combination of qualitative assessments and quantitative tests, of the voice of the patient and the expertise of the doctor, of a drug's past efficacy and a unique person's internal chemistry.

All those things combine and paint a picture that isn't as clear as any of us would like it to be. It's kind of like someone who has taken off her coke-bottle thick glasses from 1998 (yes, some of you are smiling at that because you've seen me wearing such things!) and is trying to paint a detailed color by number picture...while there are some guidelines to follow, those guidelines are fuzzy at best and completing the picture is definitely not going to be within the lines.

(Ha! Not a bad analogy. Just came up with that. Such a sharp cookie I can be, eh?)

And that just describes all the medical combinations.

For those of us who believe in a God who is in and above and outside and bigger than all those things, it's even more complicated.

I would argue that it's infinitely better, but it's also definitely more complicated too.

Why's it more complicated? Well, said simply, because God can remove the only thing that the medical community treats as a "known" in this thing - my death from this disease.
He can remove that "known" (death), spin it's on it's ear, and make it an irrelevant, totally-not-gonna-happen, don't-trouble-your-mind-one-second-about-it thing.

Death from cancer?
Or is it a never-gonna-fully-explain-it rescue from cancer?

Hmm…guess what?
It's a wait and see.

So today's plan of wait and see (which, by the way, doesn't go against my doctor nor is my doctor going against me in that recommendation) is actually totally okay by me.

It's not that I have incompetent doctor.
It's not that I'm burying my head in the sand.
It's not that I'm being stupid about not wanting to be bald (although, seriously, I just got my hair done and according to friend, it looks marvelous!)


It's about resting in a place of recognition that I cannot determine the outcome of this. In a place of trusting in the One who can and does. A place of surrendering my desire to "know how this will go" so that I can embrace His goodness and His blessings and His grace and His presence today.

So the plan?
It's no different than it has been really:
Wait on God.
And see His face while I wait.


Oh, and to go to the grocery store.
We really need some food in this house.
Love to you all. Thanks for your prayers. They matter.
K.

Update #48

And…..
It's a shocker….
Ready for it?

"Wait and see."

Actually, the news was a bit harder than just a neutral wait and see.

The reality is that - while the CT shows no change and my tumor markers are back in the normal range - one test, the bone scan, shows that there is probably mild disease progression in a few places on certain bones in my body. To help shed more light on the bone scan's results, I just had today an x-ray of my left femur and both hips to get a better look. (I'll hear the results of that tomorrow). With that mixed bag of results, the underlying question still remains: Is this probable progression bad enough to switch treatment?

My doctor (who I trust and appreciate very much) wants to wait 1-2 more months - unless my symptoms in my leg become substantially worse - before she recommends any treatment changes. The reason? Slow disease progression is still considered, medically anyway, a relatively acceptable outcome when you have a Stage IV diagnosis - especially when the treatment plan you're on has mild side effects.

While it may be medically acceptable, it's really not all that acceptable to me. Although I'm not crushed by the news I heard today - thankfully, in no way shape or form am I even close to crushed by it - I didn't like hearing what I heard. No one in their right mind would just smile and laugh at hearing the words "disease progression" strung together. Right? I'm not just a strange one in that regard, right?

Right.

Yet I also know that I, by far, did not receive the hardest news in that place today. Guaranteed. So while I don't offer a yippee over today's news, I will choose to remember that, and instead, be thankful for the easy things about my day today.

I'll choose to be thankful that I don't have to change anything medically right now.
I'll choose to be thankful for Chad rubbing my back and giving me strong, comforting hugs.
I'll choose to be thankful that the pains that I am experiencing are intermittent and most of the time don't even require a tiny little Advil to combat them,
I'll choose to see the many texts, emails, posts on FB as a tangible expression of God's love

Oh yes…there's lots to be in prayer over in this thing, but there's also lots to be thankful for too.

Above all, today was yet another can't-ignore-it reminder that my medical team doesn't have the final voice in my life. While I appreciate them - and the science under-girding their skills - they don't have the final say as to how I live my life. Why I live it the way I do. Even what's going to happen in it. That falls squarely on God's shoulders.

Thankfully, He's fully trustworthy for that job.
May I remember that and hold fast to it.
　
One more thing before I go TAKE A NAP (not words often spoken by me!)... I wanted to pass along something I read today as I sat in the waiting room. I totally appreciated both the challenge and the encouragement of it. Matthew Henry, in his Commentary on the Whole Bible, made a passing comment as he was offering some insight on a particular passage in Scripture. Here's what he said, "If we do not know truth, we cannot be ruled by it."

I won't say anything more about it.
But, do me a favor, and spend a minute thinking about it.
May it both challenge and encourage you too.

Thanks for your prayers and your encouragement.
With Love,
The Blonde-Ponytail-Sporting-Kristie
:)

Update #29

Who would have thought that getting two gigantic shots in the bum and an infusion in your arm would be an excellent outcome to a trip to Roswell?

Not me.

Until today!

Although my tumor markers are up again slightly, my scans were basically unchanged from 6 months ago.  This was wonderfully surprising news!  I fully expected - based on lots of factors - to walk into my appointment today hearing that I needed to start chemo. My oncologist prepared me well for hearing that after my meeting last month. 

So...what easy, easy, easy news to hear that the scans didn't show progression of disease and, therefore, no treatment change.

That's right;  you heard me correctly.  No treatment change.  That means...

NO CHEMO!!!!

I will be rescanned in 2-3 months to see how things are going.  Until then....

NO CHEMO!!!!

Did I say that yet? Hmm...let me try that again to see how it rolls off the tongue...

NO CHEMO!!!!

Yes.  That's a sweet, sweet sound.

So many emotions, so many praises that are easy to lift to God, so many things that dance through my head. 

But, for now...really...I don't have a lot of words. (Shocking, huh!)  Just thankfulness.  Deep, deep thankfulness.

Summer vacation begins in 6 days.

I cannot wait!

Thanks for your prayers and your encouragement.  As always, you floor me at how well you love me.

K.