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

December's MRI Results

In the middle of round three of high dose chemo. So far, so good.

Here is Craig's most recent post from the CaringBridge Blog.

"Unfortunately, we did not receive the news we wanted regarding Tracey's latest MRI. There is recurrent tumor growth. A new tumor has formed. You can click the photograph to the left to see it. The new tumor is rather small, about 9mm. It is just above the spot where the original tumors originated, which is now a cavity as they were completely resected on 1 August. You will note how small the new tumor is at this point as compared the original occurrence.

This is a very strong kick to the gut. Making it an even stronger kick to the gut is the location where this tumor is emerging. It is directly on the motor strip that controls Tracey's movement on the left side of the her body; her arms, legs, etc. Going after it with a scalpel could be dangerous and cause damage to motor skills. Tracey is left handed and as you know an artist.




So, what is next? This is where the power of the Duke Brain Tumor Center comes in to play in a huge way. There is are several strong and promising options on the table to eliminate this tumor, including having radiosurgery with a gamma knife (a non-invasive super powerful radiation that zaps the tumor) to new drug treatments or even innovative vaccines that Duke is developing. The next step could a combination of several of these options.

We are going to Duke next week right after Christmas. Please pray that the Lord would provide wisdom and guidance to our doctors in Durham.

Understanding the highly aggressive nature of glioblastoma, we knew that recurrence was virtually assured. Every long-term survivor we have met has battled at least one if not more cases of recurrence. We knew this coming, we were just hoping it would have been a little further down the road.

The next immediate course of action is chemotherapy that begins tonight. It will last for five days. Please pray that the chemotherapy is highly effective in not allowing this new tumor to grow any further. Please also pray that Tracey's nausea will be much lower than the last round. We have some new anti-nausea meds that we are hoping will be effective.

So, we have a strong and aggressive plan in front of us, chemotherapy this week followed by a trip to Duke to plan the next course of action to eliminate this recurrence. We so very thankful that this was found very early and at a point where Tracey is showing no symptoms of even having a new tumor. And we so very thankful that the Lord has provided us the top experts in the world on brain tumors to be on our medical team."

We are meditating on this promise from Isaiah 43:

Do not fear, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
For I am the LORD your God,
the Holy One of Israel, your Savior.

Waiting......

Me and Craig going on a date......

Since my last post Thanksgiving and round two of high dose chemo has occurred. The second round has very difficult and I was sick for about six days. I have to be honest and say it was a dark week for me. I wonder how I can do this for another 10 or more months. My post HDC visit to my oncologist has armed me with several new anti nausea meds to try on the next cycle. I am glad to have them available in part and in part hate to have to take more meds. I suppose I have a decision to make before December 19th, round three. My appetite continues to be spotty as does my energy.

So many of you have stuck in there with me all along this journey. You have not once missed an opportunity to encourage me with prayer, words or even hitting the "like" button on Facebook. I feel less lonely in this because of you all. Even when I am too sick or tired to reciprocate, many of you continue to suffer long with me. I cannot thank you enough. Hang in there with me. You mean more and are helping me more than you can know.

When will I paint again? It is the question everyone asks. I feel as though I am wandering around trying to get a grip at the moment, still processing the last four months and getting accustomed to a new "normal." I have sold several large paintings in the last few weeks, so as they fly out the door, I am at least beginning to think about getting back to it. Do I even remember how to paint?...

Next MRI December 16th, trip to Duke December 19th...


"Do you not know? Have you not heard?
The Everlasting God, the LORD, the Creator of the ends of the earth
Does not become weary or tired. His understanding is inscrutable. He gives strength to the weary,
And to him who lacks might He increases power. Though youths grow weary and tired,
And vigorous young men stumble badly, Yet those who wait for the LORD
Will gain new strength; They will mount up with wings like eagles,
They will run and not get tired, They will walk and not become weary."
Isaiah 40

I am counting on Him.