Duke Brain Tumor Center

This will be mostly an informational post. My neck and shoulders are really acting up and I have to be careful about lingering on the laptop.

We spent the last two days at Duke meeting with new team members. We came away with a lot of new information and much to consider. The MRI I had last week shows a lot of blood in the tumor cavity due to having my brain cut and radiated. So, we are still on the mend twelve weeks out from the craniotomy and three out from radiation. The plan is to return to the center late December with a new MRI to see what changes have occurred in the cavity and also with the 2mm area of concern. Then we will know if there will be added medication, etc.

I begin high dose chemotherapy tonight. This will be five days out of every month for at least the next 12 months. I have a fair amount of dislike for this part of the road. It is hard to say how my body will handle the drug in high dose. And the knowledge that while it is destroying an aggressive cancer it is very hard on bone marrow. And it does tend to cause nausea so I will be taking anti-nausea meds before each dose. Talk about surrender. So, today I have spent most of my time resting, praying and chewing on our two days at Duke. It is a lot to digest.

Camping out in Romans 8. Through the Holy Spirit and several others I continue to get pointed to that chapter again and again over the last few weeks. It is a massive chapter. I could camp there for a year and still not mine the riches there.

Romans 8
"Therefore there is now no condemnation for those who are in Christ Jesus. For the law of the Spirit of life in Christ Jesus has set you free from the law of sin and of death. For what the Law could not do, weak as it was through the flesh, God did: sending His own Son in the likeness of sinful flesh and as an offering for sin, He condemned sin in the flesh, so that the requirement of the Law might be fulfilled in us, who do not walk according to the flesh but according to the Spirit. For those who are according to the flesh set their minds on the things of the flesh, but those who are according to the Spirit, the things of the Spirit. For the mind set on the flesh is death, but the mind set on the Spirit is life and peace, because the mind set on the flesh is hostile toward God; for it does not subject itself to the law of God, for it is not even able to do so, and those who are in the flesh cannot please God.

However, you are not in the flesh but in the Spirit, if indeed the Spirit of God dwells in you. But if anyone does not have the Spirit of Christ, he does not belong to Him. If Christ is in you, though the body is dead because of sin, yet the spirit is alive because of righteousness. But if the Spirit of Him who raised Jesus from the dead dwells in you, He who raised Christ Jesus from the dead will also give life to your mortal bodies through His Spirit who dwells in you.

So then, brethren, we are under obligation, not to the flesh, to live according to the flesh— for if you are living according to the flesh, you must die; but if by the Spirit you are putting to death the deeds of the body, you will live. ¹⁴ For all who are being led by the Spirit of God, these are sons of God. For you have not received a spirit of slavery leading to fear again, but you have received a spirit of adoption as sons by which we cry out, “Abba! Father!” The Spirit Himself testifies with our spirit that we are children of God, and if children, heirs also, heirs of God and fellow heirs with Christ, if indeed we suffer with Him so that we may also be glorified with Him.

For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us. For the anxious longing of the creation waits eagerly for the revealing of the sons of God. For the creation was subjected to futility, not willingly, but because of Him who subjected it, in hope that the creation itself also will be set free from its slavery to corruption into the freedom of the glory of the children of God. For we know that the whole creation groans and suffers the pains of childbirth together until now. And not only this, but also we ourselves, having the first fruits of the Spirit, even we ourselves groan within ourselves, waiting eagerly for our adoption as sons, the redemption of our body. For in hope we have been saved, but hope that is seen is not hope; for who hopes for what he already sees? But if we hope for what we do not see, with perseverance we wait eagerly for it.

In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words; and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the saints according to the will of God.

And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. For those whom He foreknew, He also predestined to become conformed to the image of His Son, so that He would be the firstborn among many brethren; and these whom He predestined, He also called; and these whom He called, He also justified; and these whom He justified, He also glorified.

What then shall we say to these things? If God is for us, who is against us? He who did not spare His own Son, but delivered Him over for us all, how will He not also with Him freely give us all things? Who will bring a charge against God’s elect? God is the one who justifies; who is the one who condemns? Christ Jesus is He who died, yes, rather who was raised, who is at the right hand of God, who also intercedes for us. Who will separate us from the love of Christ? Will tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? Just as it is written,

“FOR YOUR SAKE WE ARE BEING PUT TO DEATH ALL DAY LONG;
WE WERE CONSIDERED AS SHEEP TO BE SLAUGHTERED.”

But in all these things we overwhelmingly conquer through Him who loved us. For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord."

"Elmo's Diner" Durham, NC.

MRI

Waiting room.........
On Wednesday I had my two week post radiation MRI with profusion. I have had the opportunity over the last three months to make the acquaintance of several MRI machines This one was by far the noisiest. I am grateful every time I have some form of medical treatment and that I can have it in this country, but honestly I thought, "Well, if I don't have a brain tumor now, I will by the time they take me out of this tube."

This morning we sat down with my oncologist, Dr Menachery. There is a new 2 mm area of concern on the scan close to the tumor cavity. As well there is a small area on the perimeter of the tumor cavity that may be dead cells or swelling. We will have another MRI early December to see what changes occur if any and then meet with my surgeon, Dr Poffenbarger.
I begin high dose oral chemo the end of October. This is what he calls, "gut check time." I hope I have enough guts.

I have tried to be as transparent as I can with my posts. These few weeks after radiation have been difficult. I have had some dark days. I think because everything moved so quickly from ER, to craniotomy, to radiation I didn't have much time to process everything. I have had a lot of time sit in this and to pray, cry and even rejoice. It seems as though I have experienced every emotion known to man, even some I couldn't possibly describe. Some days I had severe headaches or fatigue....and "hello darkness, my old friend." I can't say today's results were encouraging.

This is hard for many to understand. Yet, once again, in His infinite wisdom and mercy God is pressing in on me even more. Though it is painful at times, I am learning to look more and more at what is eternal and learning to lean less and less on a dying body. Yours is dying, too, by the way. Just give it time. We are all terminal. My body is not reliable nor is it forever. Jesus is the same yesterday, today and forever. He is who He says He is. Every day I become more confident of this as my fingers are mercifully pried off of what does not fulfill. My self sufficiency, self reliance, hyper independence...excellent health...everything the entire world values, has been stripped away. If that gives me more of Jesus, than so be it.

2 Corinthians 12
".....to keep me from exalting myself, there was given me a thorn in the flesh... Concerning this I implored the Lord three times that it might leave me. And He has said to me, “My grace is sufficient for you, for power is perfected in weakness.” Most gladly, therefore, I will rather boast about my weaknesses, so that the power of Christ may dwell in me. Therefore I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong."

Waiting and Healing

I am not sure where I am in my head these days. Now that radiation is complete, I suppose we are is a waiting and healing phase now. I have had a few bad days mostly from tapering slowly off of the decadron. Sleep does seem to be coming a bit easier and lasting a little longer, though, so I am grateful for that change. I have been able to get back to basic working out which is made rather interesting by seizure meds.

So here is the battle plan:

I have an MRI with profusion Wednesday October 19th.
Friday October 21 we meet with the oncologist to set the plan for high dose chemo starting in November for at least 18 months.
Then off to Duke Brain Tumor Center Oct 23-25 to be assessed for new treatments like gene therapy and promising drugs.
Another MRI early December and follow up appointment with the Dr Poffenbarger, my surgeon....
Then we go on to MRIs every three months.
If I get to the 18 month make without recurrence....well, that is a big deal.


Psalm 46

God is our refuge and strength,
A very present help in trouble.
Therefore we will not fear, though the earth should change
And though the mountains slip into the heart of the sea;
Though its waters roar and foam,
Though the mountains quake at its swelling pride.
Selah.

There is a river whose streams make glad the city of God,
The holy dwelling places of the Most High.
God is in the midst of her, she will not be moved;
God will help her when morning dawns.
The nations made an uproar, the kingdoms tottered;
He raised His voice, the earth melted.
The LORD of hosts is with us;
The God of Jacob is our stronghold.
Selah.

Come, behold the works of the LORD,
Who has wrought desolations in the earth.
He makes wars to cease to the end of the earth;
He breaks the bow and cuts the spear in two;
He burns the chariots with fire.
“Cease striving and know that I am God;
I will be exalted among the nations, I will be exalted in the earth.”
The LORD of hosts is with us;
The God of Jacob is our stronghold.

Day Thirty

Six weeks, thirty sessions of radiation are complete. Jesus told me that He was on that table with me every time experiencing every moment with me. Faithful.


Psalm 30:1-4

I will extol You, O LORD, for You have lifted me up,
And have not let my enemies rejoice over me.

O LORD my God,
I cried to You for help, and You healed me.

O LORD, You have brought up my soul from Sheol;
You have kept me alive, that I would not go down to the pit.

Sing praise to the LORD, you His godly ones,
And give thanks to His holy name.

Days Twenty Five and Twenty Six.

I feel like we are rolling along now in a daily routine. Mostly I am in and out of the treatment area within fifteen minutes. We are slowly narrowing in on the middle of the tumor cavity. Four more to go.

I focus on praising the Lord while I am on the machine, now.

"Bless the LORD, O my soul,
And all that is within me, bless His holy name.
Bless the LORD, O my soul, And forget none of His benefits;
Who pardons all your iniquities, Who heals all your diseases;
Who redeems your life from the pit, Who crowns you with loving kindness and compassion;
Who satisfies your years with good things, so that your youth is renewed like the eagle.

The LORD performs righteous deeds
And judgments for all who are oppressed.
He made known His ways to Moses,
His acts to the sons of Israel.
The LORD is compassionate and gracious,
Slow to anger and abounding in loving kindness.

He will not always strive with us,
Nor will He keep His anger forever.
He has not dealt with us according to our sins,
Nor rewarded us according to our iniquities.
For as high as the heavens are above the earth,
So great is His loving kindness toward those who fear Him.
As far as the east is from the west,
So far has He removed our transgressions from us.
Just as a father has compassion on his children,
So the LORD has compassion on those who fear Him.
For He Himself knows our frame;
He is mindful that we are but dust.

As for man, his days are like grass;
As a flower of the field, so he flourishes.
When the wind has passed over it, it is no more,
And its place acknowledges it no longer.
But the lovingkindness of the LORD is from everlasting to everlasting on those who ^[f]fear Him,
And His righteousness to children’s children,
To those who keep His covenant
And remember His precepts to do them.

The LORD has established His throne in the heavens,
And His sovereignty rules over all.
Bless the LORD, you His angels,
Mighty in strength, who perform His word,
Obeying the voice of His word!
Bless the LORD, all you His hosts,
You who serve Him, doing His will.
Bless the LORD, all you works of His,
In all places of His dominion;
Bless the LORD, O my soul!"

Psalm 103

Day 24

Counting down the days. I finish radiation on October 5th. Even the technicians are excited for me and they are so great to work with. I am now eight weeks post craniotomy.

I have been able to begin slowly to work out again. I have always recorded my workouts in a log book so I can see my progress. Today, I pulled out my log and saw that the last workouts I did were July 18th and 19th, just two days before I went to the ER with focal seizures. On the 18th I did an entire upper body weight training circuit, on the 19th the work out was a high intensity plyometic sequence with a step aerobic routine on a 10 inch step. Today, I logged "Basic Step - 25 minutes - 4 inch step." Seeing those two entries was powerful for me. I feel really overwhelmed with gratitude to the Lord to have the strength to finish that 25 minutes.


Reuben had what looked like a seizure out in the yard yesterday. He will be making a visit to the vet this week. Pray for my sweet boy. He has been very out of sorts all along this last nine weeks and anxious about me.




"To those who reside as aliens....and who are chosen according to the foreknowledge of God the Father, by the sanctifying work of the Spirit, to obey Jesus Christ and be sprinkled with His blood: May grace and peace be yours in the fullest measure.

Blessed be the God and Father of our Lord Jesus Christ, who according to His great mercy has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead,to obtain an inheritance which is imperishable and undefiled and will not fade away, reserved in heaven for you, who are protected by the power of God through faith for a salvation ready to be revealed in the last time.

In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials, so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ; and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory, obtaining as the outcome of your faith the salvation of your souls." 1Peter 1:1 - 9

Days Twenty Two and Twenty Three.

Now that I am getting so close to the end of radiation, my focus is knocking them out. I had two very quick, uneventful treatments. I am so thankful that I have had comparatively few side effects toward the end of this stretch. These two treatments I was in and out in fifteen minutes. I like that.

"But whatever things were gain to me, those things I have counted as loss for the sake of Christ. More than that, I count all things to be loss in view of the surpassing value of knowing Christ Jesus my Lord, for whom I have suffered the loss of all things, and count them but rubbish so that I may gain Christ, and may be found in Him, not having a righteousness of my own derived from the Law, but that which is through faith in Christ, the righteousness which comes from God on the basis of faith, that I may know Him and the power of His resurrection and the fellowship of His sufferings, being conformed to His death; in order that I may attain to the resurrection from the dead. " Philippians 3:7 - 11