Update #51

Super late in posting...sorry...this was sent out on May 1, 2013

[Oops. I almost forgot to lead with the punch line from today’s visit at Roswell: scans scheduled for 5/22 with a follow-up appointment on 5/29 to hear the results.  Also heard that there may be another non-chemo based option that is available to me if a change in treatment is needed based on the scan results. All in all, much easier news than what I could have heard and there’s a relief in that for me.  But rather than talk more about that, what I really wanted you to hear was this…]

Two nights ago, I popped into Daniel’s room for the still popular (thank goodness!) “tuck-me-into-bed” time.  I found him like I often do: snuggled under his covers with a stuffed animal held tightly in his hand. However, on this night, his head was buried in his pillow and he was crying.  

“What’s wrong, buddy?”

Sniffle, sniffle, cry, cry. “I don’t like being a kid.”

“Why’s that, D?”

“Because I don’t have any control.”

After a little cajoling, I found out that Daniel’s tears were due to his daddy saying “No” to his request to have a treat before bed.

You see, Daniel wanted a treat. Bad.

He knew what treat he wanted.

He knew where it was located.

He could imagine how great it would taste, how it would make his belly feel.

How good it would be to have.

He also knew how easy it would be for his dad to say yes to his request and he didn’t really understand…he certainly wasn’t okay with…why his dad was saying no.

Begging and pleading didn’t work to change his dad’s mind.

Arguments and logic didn’t make a dent.

Even the tears that fell from his eyes didn’t have the effect that he wanted them to have.

His dad held firm to his answer, “Not now.”

And when Daniel came to the end of his ability to bargain, his ability to try to persuade…his little 10-year old self got frustrated.  And, for one night two days ago, he determined that the only solution must be to stop being the kid.  To trade his position for the position of his parent.  It had to be better than just being the kid, right?  He’d do it better, right?

Oh Daniel.

How I know how you feel.

I’m sometimes that kid too.  

I’m that kid who has asked and has asked and has asked again and again her Dad in Heaven if she could have something. If He’d open the pantry door and allow her to get that sweet treat of easy, easy news. News that she sometimes thinks would just make everything all better.

I’m that kid who has cried in her pillow as she’s struggled with not understanding this. Not understanding His “not yet” answer.  Who doesn’t like it.  Who wants to know why.  

I’m that kid who wants her tears, her bargaining, her honest heart-gushings to change His “not yet” to a “Yes!” response.  

And, I’m also that kid who, when she doesn’t get the answer she wants, is tempted to believe that life would be so much better if she were in control. If she made those decisions. If she had unhindered access to the pantry of treats and could grab what she wants when she wants it.

Oh yes, Daniel, how I understand.

The seeming-withholding of a sweet blessing is difficult whether you’re 10 or 40.

And as I spoke words of truth to Daniel that night - truths about the great and many benefits of being the child of his father - Daniel’s sobs subsided. The tears stopped falling.  His crumpled, distraught face calmed. And soon a smile began to appear on his face.

Was it the exact words I spoke that made the difference?

Oh, I’m sure they had an impact.

But my guess is that the exact words weren’t really the game-changer for him.

I think the real game changer was that Daniel was reminded that his dad loves him.

I learned afresh these past 24 hours that it's the game-changer for me too. When my heart is hurting and I’m frustrated, all the truth contained in His word doesn’t soothe, doesn't mend, doesn't infuse joy unless I hear and trust that those words are spoken by the One who loves me.    Knowing that the One who hears and responds to my deepest needs and my most desperate pleas...knowing that He loves me...puts my list of worries, complaints, and frustrations in a surrendered, restful position.  

And that's a far better place to be.

Just ask Daniel.  

Thanks for your prayers and encouragement today. I will say it again and again...you all rock.

K.

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.