Update #53

Just a quick one now…perhaps I'll write more later…

Based on scans and slightly increased tumor markers, I will be changing treatment to an endocrine based therapy.  This therapy is a newly approved therapy for Breast Cancer and one that has side effects that are substantially easier than traditional chemotherapy.   I will start taking these daily pills in the next couple of days.   One of the listed side effects is "a change in personality."  I openly laughed out loud at that one.  That's funny.  How in the world do they measure that?  (Let's hope I don't have to come back in a few weeks and tell you that I know why that's listed as a side effect. Thank goodness I'm not naturally wired to be a hypochondriac…can you imagine!?! :)

So, although I'm not starting a hard chemo regiment (for which I am beyond-words grateful), I do have a few prayer requests that'd I'd love for you to be praying….

(1) There MAY be cancer now in my lung. If so, it's small (and no symptoms that I can tell).

(2) I MAY need to have radiation done to my left femur as it's been causing me some pain.  I will consult with a Radiation Oncologist in the coming days.

(3) I MAY need to have surgery to put a rod in my femur to stabilize it. I will be meeting with a orthopedic who specializes in bone-based cancer in the coming days.

(4) Although there are several not-so-nice side effects of this new endocrine therapy, a more common one – and one that could preclude me from continuing with this therapy – is debilitating mouth sores.  I don't want those.  Nor really do I want ANY negative side effects!! :)

(5) I would really like for this treatment to work wonderfully.

(6) I would really, really, really like for cancer to be fully, forever and ever gone from my healthy body.  Now, that's a risky, bold prayer.  Anyone signing up for that one? :)  I know that I have been, and will continue to,asking for that and have been/will continue to do my best to trust His answer and His timing. 

Thanks, friends.

You know, not every time I've gone into Roswell, have I walked in and out emotionally in a good place. Today – despite the seemingly difficulty of the news that I heard – I did.  I'm super thankful for that. 

I hope no matter what lies before you, no matter what your feet are walking thru, no matter what your eyes see as they glance around you, no matter what your ears can't help but hear…in the midst of all that, I hope you have a deep sense of His hands holding you.   It's not always an easy place, but it's a good one. 

Update #52 - With a Twist

It's been three years since my re-diagnosis. 

And it's been three years of you having to read update after update after update as to what's going on in my life. 

In honor of your tremendous commitment, I've decided to give you a break from reading yet another typical update and have determined that you all must now have the opportunity to experience my fantabulous poetry skills. In fact, I'm sure that, once you read this poem, you will decide that Shel Silverstein and Dr. Seuss have nothing on me. 

Roswell tomorrow.

Oh how fun.

Roswell tomorrow.

Hmm…what has this cancer done?

Roswell tomorrow.

For scans, scans, scans.

Roswell tomorrow

I may need ya, but I ain't one of your fans. 

Any applause? 

No? 

What's that, you say? 

Perhaps I should stick to just plain 'ole writing?

Okay.

Be back in touch next week Wednesday after I hear the results. 

Until then, please know that I will be forever thankful that you have walked these years with my family and me.   You have loved us well.

Love to you,

K. 

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.

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 #47

Wrote this around 2 PM today. Didn't get a chance to send it out until now. I'm, thankfully, home!
______________________________________
Sitting at Roswell. Waiting for my scans. Again.

Not a place that I am unfamiliar with.
But not a place that makes it easy for me to rejoice.

The sad part is that I'm not alone.

In the last 15 minutes, there have been 30 other people, couples, families who have walked by my little, out-of-the-way place where I've set up shop as I wait. Whoops. Make that 31.

Time to be honest. Do you know what question I have asked myself over and over again during the past almost three years when I'm here?

Do I care?
Do I care that there are hundreds and hundreds of other patients here?
Or do I just care that I'm here?

Perhaps my answer to this question isn't completely black and white, but I do have a definitive answer to that question.

Chad and I have taken a very nice Christian worship song that has a line it is that says, "It's all about you, Jesus. And all this is for you, Jesus" and we - when we think the other person is being a bit selfish or egocentric - will sarcastically sing it to the other one but replace Jesus' name with one of our names. In essence what we're laughingly reminding each other of is that there is One who deserves to be the center of the world, but neither one of us is Him.

So, because Chad's off getting a quick bite to eat in the cafeteria, I guess I'm stuck singing that sarcastic version of that lyric to myself. Because, truth be told, that's how I feel right now.

I could lie to you and say that I don't care as much about myself as the others' who are in this place. I could pretend that I've never thought about it before or that it's a silly question. Or I could even lie to you and say that, from now on, I will care about others more than myself; after all, that's biblical. But since I have committed to walk this journey out with you as authentically as possible, those are not viable options.

The truth is that I'm in process on this one. And, while I wish my honest answer isn't what it is, the reality is that's where I am: I care very much what happens to me and sometimes that makes me focus only on me and what this means for my husband, my kids, my dog even :)

So why am I sitting here with a smile on my face after coming to this "you're not as good as you thought you were" realization?

Because, as much as I know that God intends for me to see things a bit differently than I see them today, I am so much more in awe of Christ.
Of His selflessness.
Of His countless examples of choosing to prioritize others.
Of His ability to change His own difficult on earth situation at any time by calling "legions of angels" to release Him and, yet, choosing not to.

Why would He do that?
Why on earth would He do all that when He could have easily and simply and quickly and painlessly have chosen not to?

(Here comes the reason for my smile…)

So that you and I could experience a forgiveness, a restoration and a freedom that is beyond words. Beyond what we deserve.

So that you and I could express our weaknesses and failures and questions and doubts and know that we will not be tossed aside as useless to Him.

So that you and I could be in a place - while not unfamiliar, but difficult - and know that we can experience a joy and a peace that defies the boundaries of our walls.

So that you and I can know that hard circumstances don't deny a good God.

Thanks, God, for that truth.  I needed that. 

So...as I go to try to beat my record in the "How Fast Can You Chug Your CT Smoothie" contest, my heart is lighter and my mind is calmer. Good stuff.

Love,
Kristie
P.S. I'll get the results on 2/6. Be back in touch then.

Update #46 And Then I Promise I'll Be Silent for a Few Weeks

Kinda easy day today.

Doctors aren't all that concerned about my tumor markers being above normal as they're only slightly above normal. However, they were adamant that it is time - actually I'm technically overdue - for repeat scans and so I will be going back to Roswell on January 30 for scans and then, the next week (2/6), for my regular monthly appointment.

My shoulders can relax again for 3 weeks. Gotta like that.

Thanks for loving us through this time. And I am behind on my reply emails so please know that, although perhaps I've haven't yet responded to something you've sent me, please know that I am so incredibly thankful for and encouraged by your words and even by your "no-words just frowny-face signs" that you send along!
K.