God's Country

We are at six weeks out from Gamma Knife (or "Cyber Knife".....that sounds cooler.) and I have an MRI this Thursday the 8th at Mary Washington. I have had a few friends also battling GBM who haven't had great news recently, so I am eager to take a look inside. I continue every other Friday IV Avastin and daily Temodar until it no longer works or we reach the 18 month mark in the clear. We then enter into "no man's land" or a sort of uncharted territory for GBM. Either way, it's God's country.

So a little blue today and a bit nervous about the next week. I find myself wanting to hide beneath the covers and take my mind off of it all by sleeping. I tend to be a deep thinker and an over thinker. And, well, there are some serious possibilities. Yet the bottom line is it is out of my control and completely in the Lord's hands. May He do what is best according to His perfect will and for His own glory. I am battling to live there today or at least visit and am relieved to know that when I become overwhelmed and crawl into bed, He is there.

So pray with us for a clean scan and for God's leading as we walk this thing out with Him and all of you.

Also pray for my fellow comrade in the fight, Rachel. She has had a rough few weeks. First a grand mal seizure and a discouraging MRI. She is currently undergoing a brutal confrontation with chemo.

"Out of the depths have I cried unto thee, O LORD.Lord, hear my voice: let thine ears be attentive to the voice of my supplications...."

Psalm 140

"Do not fear, for I am with you; Do not anxiously look about you, for I am your God.

I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand.’

“Behold, all those who are angered at you will be shamed and dishonored; Those who contend with you will be as nothing and will perish.

“You will seek those who quarrel with you, but will not find them, Those who war with you will be as nothing and non-existent.

“For I am the LORD your God, who upholds your right hand, Who says to you, ‘Do not fear, I will help you.’

Isaiah 41

Race for Hope 5K

Craig and I along with friends are running the Race for Hope 5K in May here in D.C. If you'd like to donate or run/walk with our team, go to my page here.

Waiting

It has been a few weeks since the Gamma Knife so we are just in a waiting period until the next MRI. That will be in a few weeks before we go back to Duke.



I have felt ok, but have a cold at the moment. Major life stressor + scary drugs + cold = eggshell moments for me as far as my thoughts and feelings are concerned. I have been laying in bed dwelling on NOT painting and chewing on the place I find myself in these days. It can taste bitter. Everything has changed. I have questioned God's call on my life and wandered into some dark corners lately. It has been seven months since my trip to the ER. When it gets pitch black I wonder if I will be here this time next year. But we could all ask that and should be mindful of that possibility.

I know God is working something in and around me through brain cancer. I see it in glimpses. Waiting to see what it is in fullness or what the outcome will be requires surrender. Sometimes we never know the why. In difficulty we have to let go of expectations for our lives, of ourselves and of others. All we have is Our Maker. The Lord Himself. Though it is so antithetical to our own nature, and of course our culture, it is in losing what we thought was so vital that we are released enough to accept God's will as perfect. It is how He designed us.

Listen, my friends, whatever that thing you are afraid of, the thing that has plagued you your whole life, the thing you are certain you could never endure, God already knows. He sees what's coming down the pipe and into your life. Jesus will already be there waiting. That has been my experience through this. He is faithful. Without exception and at all times.

Love you all......more than you know.

(For those of you beautiful people who don't know anything about Jesus or are unsure find out who He is. Don't let your bad church experiences or personal opinions keep you from doing the good work of seeking and knocking. Email me if you want to hash it out. I don't have all the answers but I'll walk with you.....tracey@traceyclarke.com)

"The LORD is my light and my salvation—
whom shall I fear?
The LORD is the stronghold of my life—
of whom shall I be afraid?"

Gamma Knife Day with Jesus

A week ago today we traveled over the UVA for the Gamma Knife surgery. I've been laying low and feeling low since then. Or maybe up and down is more accurate. In some ways I think the gamma knife was harder than the craniotomy I had back in August even though this was non invasive.

What was supposed to take 4 or 5 hours took 9.



Everyone knows the first thing you do when you prepare for surgery is put on nothing but a paper gown, sit in a freezing cold room and wait. At least they let me keep my hat on!



First I was sedated and the stereo tactic frame was screwed on around 10 a.m. Thus far, I am fine, my head good and numbed up.



The Gamma Knife team came in and took measurements of my head to work out my treatment plan. Things seemed to be moving along. Plus, Craig is entertaining.....no problem.

I was then wheeled up to MRI around 12:15 where I proceeded to sit for another two hours. At this point the local anesthesia of my scalp is beginning to wear off and my catheter blew and had to be removed. I had the pleasure of being stuck four times that day.

I am finally put into the MRI machine a little after two and then taken to the Gamma Knife waiting area. I finally went into the Gamma Knife at around 4 p.m.



Then the frame was removed. By that time I had already been given three Vicoden but when they took that frame off.....I had THE worst headache of my life. One of the pin sites was squirting blood everywhere....it was quite a show. Dr Poffenbarger, the surgical wizard that he is, put a stitch in that in less than 10 seconds. Amazing.



So back up to finally eat after 24 hours and wait to be released. We are so happy because it is over. See how happy we are? This photo was taken at about 5:30 p.m.

Ok, so I say all this not only to give you the rundown with neat photos, but to tell you that the Lord Jesus was most faithful in the midst of this trying day.

First, my MRI I had that day showed the tumor has shrunk from 10mm to 6 mm. All my fears about Avastin (of which there are many), the tumor starving drug, as real as they are, must submit to what we have asked of God: to lead us down the right treatment path to kill GBM. That drug is a powerful drug in the hands of an even greater more powerful God. Each time I am tempted to run over in my mind the list of scary side effects, I must choose to return to what we asked of God and believe He is doing: running the show. Jesus is walking with us, going into the MRI machine and the Gamma Knife with me. Feeling how I feel getting poked over and over.

I was feeling pretty low sitting on that stretcher waiting for the MRI for two hours. Cornered, waiting, with some heavy ridiculous contraption on my head. He is good to force me into places which I cannot run from and have no other to run to. These tight spaces reveal what I am really putting my hope in. They are the pits of refinement by fire and how He brings forth the pure gold. Humility, empathy....truth in the inward woman. He knows how best to build those things in us. Does it hurt? Yep. Is it fun? Heck no. But on the other side is the the fruit of righteousness. You can count on it.

The pain in your life, whatever it is or wherever it is from, either the consequences of your own choices, the choices of others or those of a fallen, dying world, is an opportunity for God to show Himself great for His glory, your good and the good of those around you. All you have to do is cry out to Him.

"MY DAUGHTER, DO NOT REGARD LIGHTLY THE DISCIPLINE OF THE LORD,
NOR FAINT WHEN YOU ARE REPROVED BY HIM;
FOR THOSE WHOM THE LORD LOVES HE DISCIPLINES,
AND HE SCOURGES EVERY DAUGHTER WHOM HE RECEIVES.”

It is for discipline that you endure; God deals with you as with sons; for what son is there whom his father does not discipline? But if you are without discipline, of which all have become partakers, then you are illegitimate children and not sons. Furthermore, we had earthly fathers to discipline us, and we respected them; shall we not much rather be subject to the Father of spirits, and live? For they disciplined us for a short time as seemed best to them, but He disciplines us for our good, so that we may share His holiness. All discipline for the moment seems not to be joyful, but sorrowful; yet to those who have been trained by it, afterwards it yields the peaceful fruit of righteousness." Therefore, strengthen the hands that are weak and the knees that are feeble, and make straight paths for your feet, so that the limb which is lame may not be put out of joint, but rather be healed."

Hebrews 12

Mind over Mordor

So I feel like crap today. I said it, I mean it. Since my last post we have just been waiting until Gamma Knife day. We leave for UVA in the morning. I have two rounds of Avastin in my system and started daily Temodar a week ago. I am wondering which of these delightful concoctions is causing me to feel especially bad over the last few days. It is probably the combination of all of it including the rebound inflammation that makes me feel like I was hit by a truck. So, I wrestle on.

The key is to pay close attention to my thoughts. Every body sensation can send the mind down the long and winding road. For instance, I have a headache today. I had a headache when I had my seizure back in July. See how I could freak out? I feel extra tired with no reason to be. My WBC was a bit low last blood work. Is the Temodar destroying my blood? Again, there is a choice to be made. I can't paint, so I feel useless. See where this could take me? To Mordor basically.



But one does not simply walk into Mordor, but one can think her way in easily. Most easily when she feels like crap. You don't even need Gollum.


"And do not be conformed to this world, (...which has taught us it is all about us....thank you Enlightenment) but be transformed by the renewing of your mind, so that you may prove what the will of God is, that which is good and acceptable and perfect.

Rejoice in the Lord always; again I will say, rejoice! Let your gentle spirit be known to all men. The Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus."
Romans 12

"Finally, brethren, whatever is true, whatever is honorable, whatever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things." Phil 4

The battle is on the mind and it all boils down to this: Who do you think God is and what is He like? Jesus is constantly pushing the tension with me at this place in my life. "Do you trust me or not?" And I make that choice to believe what He says about Himself not to get relief because sometimes I don't, or get points (that is religion and I am already accepted completely because of His death and resurrection.) I choose to trust who He says He is so I can walk in reality by acknowledging His sovereignty, His perfect will and His choices for me as His daughter. I choose to trust Him because I love Him.

I acknowledge His rightful ownership over all things....including my body. I choose Him.

"Christ's Cross+Romans 8:28+God's sovereignty = "Every single thing that happens to us expresses God's love for us." JI Packer

I am always open to talking about what I post so feel free....and pray for my surgery Wednesday.

Grateful to each of you who has pushed on with me without ceasing.....

Gamma Knife video

Gamma Knife Video

I will be having the remarkable Gamma Knife surgery on January 25th. Here is a video of
how it works.

Pressing Upward

I have been thinking lately how my life seems to be nothing more than a schedule of next medications, doctors and procedures. It seems every aspect and corner of my life has changed from the trajectory of my days to coming and going relationships. Some of these have been quite painful. No. Actually all of it has been painful, both physically and emotionally. But there are seasons for all things. I fully believe that now. Learning to let go is one of the most difficult things we will ever do whether it is something physical or relational.

One of the issues I am dealing with now is rebound inflammation. This is an unfortunate result of long term use of steroids. In short, Decadron suppresses the metabolism of omega fats and once discontinued the body is hit with unmetabolized fats that result in inflammation. So I have very bad joint and muscle pain. You could say I am like an arthritic. Some days are worse than others. The key is to focus on the truth of God's promises regardless of what things appear to be. When I am in that funk, not wanting to get out of bed or feeling afraid of the new IV drug I am taking, or when I begin to wonder how things will go for me, I must discipline my mind. Sometimes it takes me a few hours to get there, sometimes a few days. Let me tell you, this is much, much more difficult than disciplining the body. No contest. A friend said to me recently, "The battle for your body is only minor compared to the battle for your confidence in Jesus." So when all appears dark, the light of Christ and who He is"......Word. Any hope or confidence I put in what I see is a wasted hope, a worthless confidence since every thing we see will be gone someday. You will die, that flat screen you got for Christmas will end up in a landfill. So what are you hoping in? My body is already failing me. At 42, in the best shape and health of my life, Glioblastoma shows up. If I survive this journey, there will be something else down the road. My point is new pain, new potentially risky drugs.....I must learn to focus on the bigger design...the giant purpose written by God. If not I won't make it. I'll cave in under the weight of these physical and relational struggles.




Craig does a better job with details so here is the report on our trip to Duke last week.

"...we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day. ¹⁷ For momentary, light affliction is producing for us an eternal weight of glory far beyond all comparison, ¹⁸ while we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal, but the things which are not seen are eternal." 2 Corinthians 4