one Year Out.

Looking in the mirror I almost look like nothing every happened. I revisited my friend, Kathy's, account of that Thursday morning seems almost ancient to me.

We've all heard the pep-tales of mighty over comers....called 'survivors' in the cancer tribe. I'm all for surviving, but it is clear to me I am here one year out from a catastrophic diagnosis not because of positive thought practice as my thoughts rarely run that stream. I am a few days out from another seizure and as I sit here in the pit of my stomach I am anxious at the prospect of another. I am tuned into every weird sensation in my head and limbs, each little vision tick and I will be for several days until each stacks up some normalcy.

I've been given many books and advice from those survivors and those who walked in the mud along side them, but often I wonder when I see no glimmer of bone and marrow, of "humanness" regarding such a horror as cancer. Often there is a shallowness in their words I cannot get a grip on. I just wonder how honest some of my surviving friends are being.

One book given to me written by an artist with cancer held up her own greatness (disguised as a sacrificial work ethic and super humanity) by writing pages of details of her chemo misery only to showcase her marathon of painting commissions despite the sickness. Or covering up disappointment and anger with humor. Nothing wrong with humor, but twenty pages in, I threw the book in the toilet. Honesty IS such a lonely word..... We are all broken, we all struggle. This is the world we live in. 


I live because the Lord gives me life and when I am afraid I remember one sleepless night last summer.

"Lord, this cancer could kill me. I could die from this and soon."

Jesus said clearly, "No one, nothing takes your life. You belong to me. Nothing touches a hair on your head unless I give permission. and in it, you will find Me your ever present Help and  I will teach you to surrender."

This is why I am alive. Because the Lord said 'live." It's the only reason you are, too.


I have learned to kiss the wave that throws me against the Rock of Ages. :Spurgeon

                                                   With Dad and Mom the day before surgery.

Free Lance Star story.

The newspaper did a story on on our journey last week.When you go to the story at the website link, under the photograph of Tracey's incision click on "View More Images from this story" for all 5 images.

 Artist's cancer journey is spiritual journey, too.




 

Dégradés de gris

(I wrote this post about a week ago and then sat on it for quite awhile. I was uncertain about being so open, BUT I decided from the beginning of this journey to be as transparent as and honest as I can.)

I almost don't have to write anything. The photo above that Craig took of me on the train speaks a million words about the road I am on. Imagery is so very powerful to me and I am shocked by the volume of the image.

These days seem to go by quickly, and we are very thankful for an MRI showing no tumor activity after two seizures. But I am beginning to search for  a  "normal." Every  weighty thought rises to the surface each fighting to be first in line as my eyes open. And then inevitably close. I can go back to sleep and they disappear for awhile with no power to get me under the covers. With no power to tempt me to pull at the thread they dangle before me.

I am now more easily overwhelmed, and struggle in a different way than in the crisis season of my diagnosis. It is difficult to tell which meds are causing which side effects. The most looming by far is depression. I feel like I should be better. Back in Black, so to speak. But in honesty I have little motivation for much of anything. Least of all painting. I am not sure why. I really am living one day at a time. This is my daily cry as the marathon continues.

 "As the deer pants for the water brooks,
         So my soul pants for You, O God.

My soul thirsts for God, for the living God;
         When shall I come and appear before God?

My tears have been my food day and night,
         While they say to me all day long, “Where is your God?”





These things I remember and I pour out my soul within me.
         For I used to go along with the throng and lead them in procession to the house of God,
         With the voice of joy and thanksgiving, a multitude keeping festival.



Why are you in despair, O my soul?
         And why have you become disturbed within me?
         Hope in God, for I shall again praise Him       
 For the help of His presence.

O my God, my soul is in despair within me;
         Therefore I remember You from the land of the Jordan
         And the peaks of Hermon, from Mount Mizar.

Deep calls to deep at the sound of Your waterfalls;
         All Your breakers and Your waves have rolled over me.

The LORD will command His lovingkindness in the daytime;
         And His song will be with me in the night,
         A prayer to the God of my life.

I will say to God my rock, “Why have You forgotten me?
         Why do I go mourning because of the oppression of the enemy?”

As a shattering of my bones, my adversaries revile me,
         While they say to me all day long, “Where is your God?”

 Why are you in despair, O my soul?
         And why have you become disturbed within me?
         Hope in God, for I shall yet praise Him,
         The help of my countenance and my God."

Psalm 42

New Normal.

There are actually some hours these days when I forget that I have stage 4 brain cancer. I am beginning to look like myself again. There was a time I didn't recognize me. My hair is all back and I have lost the "steroid ten." Very shortly it will be the one year out from a hot July day that changed our lives. I will say "had" cancer though there is no cure. But I have a Healer in Jesus and one way or the other I will be healed. I am finding the fear less present as I release my grip on what I falsely think is mine.

I am seeking to conquer my anxiety around IV Avastin with gratitude, and a sense of humor. I have a strict rule forbidding my mind to swim around in it's murky and treacherous side effect waters. Though each time I wonder if we'll get a good vein, I accept it. My veins are deteriorating but I still am not ready for a port. We have twenty four treatments total at least. I am on nine this Friday, so the port option is in arms reach if so needed.

Depression , my old friend, has crept up slowly over the last few months. I find it hard to get out of bed in the mornings. I do have to feed and take out Big Puppy (Reuben's rap name) and often find myself crawling back to bed after making myself eat a bowl of cereal. I come from a family of doers, so at times I can feel rather useless and full of regret when the Lord finally gets me up at 10 or 11 in the morning. This is a matter of changing how I think and remembering I am not what I do or what I do not do. This is also a releasing and confessing that I often get my contentment out of how much I accomplished rather than from my relationship with God. You can imagine after eight months of battling brain cancer the accomplishment idol has created a lot of guilt and restlessness in me. I have to work hard at letting my eyes linger on the cross of Christ and allow Him to tell me who I am.



I started painting again, having sold everything. I am thankful, yet struggling in some ways that all the work that comprised the first of the New Mythology series are gone. Each of them is deeply embedded in my psyche....... those characters are still alive and eager to be made anew....
I began a series of portraits from the New Mythology War of Birds. Now if I can just wrestle through and get to the easel.

Please ray with me and Craig for the work He has placed before us. For my struggle with depression and Avastin and for complete healing. But above all pray that Christ would be glorified through all these and through us.

The May Schedule:

Official post-Gamma Knife MRI is May 3rd

Avastin May 4th

D.C. Race for Hope May 6th (you can still join our team...:)

Back to Duke on May 8th

We meet with my surgeon, Dr Poffenbarger May 11th.

Avastin May 18


"He rescued us from the domain of darkness, and transferred us to the kingdom of His beloved Son, in whom we have redemption, the forgiveness of sins.

He is the image of the invisible God, the firstborn of all creation.

For by Him all things were created, both in the heavens and on earth, visible and invisible, whether thrones or dominions or rulers or authorities—all things have been created through Him and for Him.

He is before all things, and in Him all things hold together. He is also head of the body, the church; and He is the beginning, the firstborn from the dead, so that He Himself will come to have first place in everything.

For it was the Father’s good pleasure for all the fullness to dwell in Him, and through Him to reconcile all things to Himself, having made peace through the blood of His cross; through Him, I say, whether things on earth or things in heaven."

Colossians 1

A Sunny Clearing

We are eight months into this journey of bitter sweetness. At times, it seems like we have been moving down this varied terrain for much longer. From the mysterious deep and treacherous wilderness, into the valley of the shadow of death and on through the exhausting dry and windswept desert.

Our MRI results from last week shows a beautiful picture of “nothing new” and a slow choking out of the small recurrence after Gamma Knife. A great sigh of relief sent us rolling up I-85 towards home on a sunny “Tuesday Afternoon.” Looking out the window I thought of the song. Somehow the words and multi-colored melody exemplified how I was feeling……

“Tuesday afternoon,
I'm just beginning to see, now I'm on my way
It doesn't matter to me, chasing the clouds away.
Something, calls to me,
The trees are drawing me near, I've got to find out why?
Those gentle voices I hear, explain it all with a sigh.
I'm looking at myself reflections of my mind,
It's just the kind of day to leave myself behind…

Passing by at 60 mph I I see the sun reflecting in an explosion of a million shades and hues of wood and leaves….of shade and light. Like sentinels they pass by in a steady stream creating in me a sense of expectation and mysterious longing I cannot quite scratch the surface of. Then…..every random once in a while the woods thins out revealing an open field drenched in sunshine. At this time, we have now come out into the bright clearing. For a time. No one stays in the open bright clearing on this terra firma. But for now, the Lord has brought us here, where He sees fit by His wisdom. We are grateful to rest for the time allotted here. Though we have fought at times to be grateful and fearless in the wilderness and in the lonely desert I am confident that He is at work His incomparable glory and for our the good and the good of those who walk with us.

“The LORD is righteous in all His ways
And kind in all His deeds.
The LORD is near to all who call upon Him,
To all who call upon Him in truth.
He will fulfill the desire of those who fear Him;
He will also hear their cry and will save them.
The LORD keeps all who love Him,
But all the wicked He will destroy.
My mouth will speak the praise of the LORD,
And all flesh will bless His holy name forever and ever…”

Psalm 145

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