Wednesday, February 28, 2007

Chemo 30

We left San Marcos at 0730 Monday morning. I never noticed the endless wall of graffiti on the west side of I-710. It is actually quite artistic. Must take a video cam some time.

It is a riot to listen to Val as she chastizes Chris for his driving habits. He is the best driver around but insists on riding 2" from the HOV wall at 80 MPH while doing business on the Blackberry. For all you NASCAR fans, I think they should make it a rule that wives have to ride shotgun at 200 mph.

We arrived at 0945 and went into the Day hospital for a blood draw. Praise God, the port that usually refuses to give us any blood cooperated. I hate the alternative of getting stuck for blood.

Although the waiting room was filled, we waited only 5 minutes before being called for our consult with Taleen and Dr. Lenz. Val's weight was 110, up 3 pounds from our last visit. Her ascites is reduced so this translates to muscle mass. Good news.

Total bilirubin was 3.4. A slight increase from the last reading (2) weeks ago. Liver enzymes were improved at ALT 42 and AST 60. Val is scheduled for a stent change in early April at Cedars Sinai. This should drop the total Bili. to less than 2.

Dr. Lenz advised us against using Chemoembolization. He doesn't think it is target specific. Apparently there is some type of foam that enters the liver and affects everything. As an alternative, he recommended Intra Arterial Chemo (IA) using Cisplatin and Mytomycin. This is an interventional radiology procedure.

He is strong on continuing the systemic treatment of chemotherapy since it reaches all areas of the body that may have cancer cells. He would like to use SIR Spheres, however, the Bili. must be below 2.0

We decided to go ahead with the Avastin. They have reduced the infusion time from 30 to 10 minutes. Val is on the 5FU pump for 48 hours. This interrupts TPN infusion.

We were out at 2pm. On the way to the car we ran into Sue Hanks, the USC Interventional Radiologist. We talked to her about Dr. Lenz' opinions. She is still a good resource.

Putting everything in context, we have some studying, thinking, and praying to do before we are ready to choose a path forward. It seems that Dr. rose and dr. Lenz are a bit at odds with treatment protocols. Both are widely respected in their field, but Dr. Rose is a Radiologist and is more professionally skilled in this matter than Dr. Lenz.

Yesterday was our (Nancy and I) 42nd wedding anniversary. Congratulations Nancy on putting up with my disfunctional antics for so long. You are the 2nd love of my life.

Thursday, February 22, 2007

Into The Light


It was cold and stormy when I arrived at 9 this morning for the trip to USC Norris. As we were getting into the car, Val fell to the ground and said she just couldn't make the trip. Cancer is such a hellish disease.

Val laid down on the couch and fell asleep. Chris went into his office to work. Tyler and I went for a hike in the hills. Julie and I talked while I was out with Tyler. We were really discouraged.

When we got back to the house, my cell phone rang. It was Dr. Steven Rose, the Radiologist from UCSD. He called to give me an assessment of Val's PET Scan from last Thursday. Expecting the worst, I heard the best. Dr. Rose indicated that all or almost all of the cancer is in the liver. It does not appear to have spread. He was very optimistic that this could be treated by SIR Spheres or Chemo Embolization. Both are interventional radiology treatments.

Val was encouraged by this positive news. Although we are concerned about side effects, including liver failure and death, I told her that it is time for the big guns. We have done enough due diligence.

It is Val's decision and she has to make it by next Monday when go to USC for the Chemo we missed today. If she decides to go forward, she has to stop the Avastin. 5FU and Tarceva can continue.

This is it. The most critical decision of our treatment. Please pray for Val as she goes to the Lord for wisdom. "If any of you lacks wisdom, he should ask God and it will be given to him." Lord give us wisdom and discernment to make this decision.

We are on the radar screen to go forward. March 9th; bloodwork, March 12; angiogram, March 20; either SIR spheres or Chemo Embolization. Also, we are meeting with Tony Reid on March 6th to discuss moving our Chemo from USC to UCSD.

Wednesday, February 21, 2007

The Gathering Storm

Beloved, I thought it important today to set all things in order.

Before an angel ever stirred. Before the Earth felt the warmth of a sunrise. Before a star ever twinkled in the night sky. Before anything was created, our High King of Heaven is.

Fly back with me on wings of faith into eternity-past. We see a council-chamber and behold the Father pledging himself to the Son, and the Son pledging himself to the Father, while the Spirit gives his pledge to both, and thus that divine compact is completed and settled. The covenant of grace which has become the joy and hope of all the saints.

God The Father speaks; "I, the Most High Jehovah, do hereby give unto my only begotten and well-beloved Son, a people, countless beyond the number of stars, who shall be by him washed from sin, by him preserved, and kept, and led, and by him, at last, presented before my throne, without spot, or wrinkle. I swear by myself, because I can swear by no greater, that these whom I now give to Christ shall be for ever the objects of my love. Them I will forgive through the merit of the blood. To these will I give a perfect righteousness; these will I adopt and make my sons and daughters, and these shall reign with me through Christ eternally."

As for God The Son; "My Father, on my part I covenant that in the fullness of time I will become man. I will take upon myself the form and nature of a man. I will live in the world, and for my people I will keep the law perfectly. I will work out a spotless righteousness, which shall be acceptable to the demands of a just and holy law. In due time I will bear the sins of all my people. You shalt exact their debts on me; the chastisement of their peace I will endure, and by my stripes they shall be healed. My Father, I covenant and promise that I will be obedient unto death, even the death of the cross. I will magnify the law, and make it honourable. I will suffer all they ought to have suffered. I will endure the curse of the law, and all the vials of thy wrath shall be emptied and spent upon my head. I will then rise again; I will ascend into heaven; I will intercede for them at thy right hand; and I will make myself responsible for every one of them, that not one of those whom thou hast given me shall ever be lost, but I will bring all my sheep of whom, by thy blood, thou hast constituted me the shepherd—I will bring every one safe to thee at last."

God The Holy Spirit gives His declaration; "I hereby covenant, that all whom the Father gives to the Son, I will in due time quicken. I will show them their need of redemption; I will cut off from them all groundless hope, and destroy their refuges of lies. I will bring them to the blood of sprinkling; I will give them faith whereby this blood shall be applied to them, I will work in them every grace; I will keep their faith alive; I will cleanse them and drive out all depravity from them, and they shall be presented at last spotless and faultless."

These words of Father, Son, and Spirit were excerpted from a sermon Delivered on September 4th, 1859, by Charles Haddon Spurgeon at the Music Hall, Royal Surrey Gardens, London, England. Truth is unchanging!

In the fullness of time, a child was born to Mary. They named Him Jesus. Only her husband Joseph and cousin Elizabeth knew the mystery of Mary's conception. He grew into manhood. The quality of His life was a lightening rod to all whom He came in contact with. Those who met and touched Him were changed forever. The Jewish Leaders were puppets under the Roman
occupation of Palestine. Much like the Vichy Government of France during the Nazi occupation, they would do anything to appease the Roman military. Jesus was a huge threat to their survival. He had to be eliminated. The charge of blasphemy was brought to Pilate. False witnesses testified. Pilate tried in vain to deflect their falsehoods but finally caved under the political pressure. On a certain Friday, Jesus was executed by Roman crucifixion. The darkest and brightest day in the history of our world. His body was removed and laid in a tomb.

As a father of four, what strikes me beyond belief is that God The Father stood as a witness to the death of His only Son because he loves my daughter Valerie so much. Just one word and His Son would be freed but no word was spoken. How great and unchanging the love of the Father is for us.

The weatherman announced this morning that the sun would shine only four hours today. But he was wrong. The sun is always shining above the clouds. The storm clouds of our journey with Valerie grow darker beloved. God's love for her lies above the darkness, but we can not always see it. Please pray that the Spirit of God within our beloved Valerie will open her eyes in a supernatural way to see the wonders that await all who call on the name of Jesus.

Val caught a bug over the weekend. She is congested and coughing, a very dangerous situation for her. Dr. Lenz prescribed Levaquin, an antibiotic. Chris picked it up at Vons but, for some reason, insurance didn't cover it and he had to pay $300. Pray that he can work that out with is insurance company.

TPN is continuing but not without problems. We have extended the infusion to 18 hours per day to mitigate the ascites . Pray that Val's body is able to absorb the nourishment. This must turn around to prevent starvation!

We are scheduled, God willing, to go up to USC tomorrow for Chemo 30. Pray also that Dr. Rose will call to give us an interpretation of last week's PET at UCSD.

Monday, February 19, 2007

PET Scan Results


Hello All!

Sorry I haven't blogged for a while but Google made us switch over to their blog server and it was a pain.

Anyway, my PET scan went well. We actually have not reviewed it with my Interventional Radiologist yet. Some of it is hard to understand. Some activity in the liver and small red spot in chest. Also, something lit up my "upper R thigh". They mentioned possible bursitis. Will get better detail after we meet with Dr. Rose.

I got put on TPN per Dr. Lenz
. He wanted to beef me up a little. It is working but we monitor it very closely with the ascities I have.

I have been feeling good. I am taking Ambrotose which I think helps with energy. I will meet w/ Dr. Rose this week to talk about next steps for the SIR-spheres.

I have been feeling good. I have been doing some form of exercise every day yoga, bike, weights.

Well baby Tyler is now coloring on my chore chart for the kids so gotta go!!!!!

Miss you!

Valerie

Monday, February 12, 2007

The Sands of Time

One day, a philosophy professor came into class, set an empty jar on his desk and filled it with golf balls. He asked the students if the jar was full. They agreed that it was. The professor then picked up a box of pebbles and poured them into the jar. He shook it and the pebbles filled the open spaces between the golf balls. He asked the students if the jar was full and they agreed that it was. Next The professor next picked up a cup of sand and poured it into the jar. The sand filled the spaces between the pebbles. Once again he asked the students if the jar was full. Their response, a unanimous "yes." Finally, The professor picked up a cup of coffee and poured it into the jar. Now, said the professor, the jar is your life. The golf balls are the important things; faith, family, and friends. If everything else is lost, your life would still be full. The pebbles are your health, your money, your job, your house, your toys, and your cars. The sand is everything else. If you put the sand in first, there is no room for the pebbles or the golf balls. The same goes for life. If you spend your time and energy on small stuff, you will never have room for the important things. One of the students raised her hand and inquired what the coffee represented. The professor answered; never forget that no matter how busy you are, always take time to have a cup of coffee with a friend.

A cute story but not quite true. In his 2nd Letter to the Church at Corinth, Paul tells us God's purpose for our time spent on Earth in this physical body;

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus' sake, so that his life may be revealed in our mortal body. So then, death is at work in us, but life is at work in you.

It is written: I believed; therefore I have spoken. With that same spirit of faith we also believe and therefore speak, because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you in his presence. All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.

Val started on TPN Saturday night. We were concerned that it would go to her ascites but, praise God for answered prayers, it did not. This nutrition is delivered by IV pump 12 hours each day. I think she is doing it from 9 pm to 9 am. Please pray that God would use this to meet the doctor's goal of adding muscle mass without converting to ascites.

Val is scheduled for a PET/CT at UCSD tomorrow morning. We have been pushing for this and are very excited about seeing the results. Also, she needs to re-schedule her missed appointment with the UCSD nutritionist.

Nancy came home from San Luis Obispo last night. Thanks again to Werner and Dorothy for the transportation.

We celebrated Gavin's 6th birthday at Chuck-e-Cheese yesterday. Tyler, Val's two-year old golden curled rock star disappeared into the overhead tube maze under grandpa's watch. Like a good CIA Operative, I kept an eye on all exits. After ten minutes, about the time I was going the report the suspect MIA to his mother, his smiling face appeared at the end of a spiral tube slide. Whew! I dodged that bullet.

Saturday, February 10, 2007

Brian Stiver

Ben Franklin once said, "actions speak louder than words." Let me give you an example of the two extremes.

This week, there was a big flap with our new House Speaker, Nancy Pelosi. It turns out that previous speakers were allowed the use of a 10-seat C32 Air Force transport jet for domestic travel. Sadly, this aircraft must re-fuel in Oklahoma City to deliver our dear Nancy to her home state of California. To stop in such a dangerous city is too much of a security risk. She is insisting on an Air Force version of the Boeing 757 to get our girl to San Francisco non-stop. The poor dear!

On the other end of the scale is Brian Stiver. Never heard of him, eh? Let me tell you the story.

Brian was Val's boss when she worked for Option Care. Shortly after her diagnosis, Val's Oncologist at Cedars Sinai prescribed Avastin. Since it was off-label, insurance was initially denied. When the first infusion was ordered in December of '05, the hospital informed us that we would have to pay $12K in advance just for the first treatment. Brian showed up and provided the therapy to us at cost.

Ever since then, as we make our bi-weekly trek from San Diego to L.A., Brian just shows up "out of the blue" with gifts for Val during her treatments. I have no clue how he knows where and when she will be at USC or Cedars Sinai. But when I least expect it, someone will tap me on the shoulder and there is Brian's smiling face.

Actions speak louder than words.

Thursday, February 08, 2007

Thursday at USC



Ten years ago, I carried this stone off Black Mountain and had it engraved. Last April, I added the boys' names to it.

Yesterday, Nancy and Val left at noon for an appointment with the nutritionist at UCSD. Val got sick en route and they had to do a u-turn back to Stone Canyon. She has been sick in the morning for a couple of days. We prayed last night and asked that she would feel well enough to make the trip to USC today.

She was better this morning. Nancy, Paul, and Val left for USC Norris at 7:30 this morning. Chris is out of town on business.

Val's weight is critically low at 108, ten pounds less than two weeks ago. Although some of it may be attributed to a bit less ascites, Dr. Lenz explained that the antiobiotics Val has been taking may have killed some bacteria that is needed for food processing. The bone structure in the area of the temporal lobe is the best indicator of mal-nutrition.

Val has to go immediately onto a TPN (total parenteral nutrition) regimen. This is a 12 hour per day, 5 days per week IV infusion to put on muscle mass. TPN includes a combination of sugar and carbohydrates, proteins , lipids, electrolytes, and trace elements. It has to be done very slowly so the fluid doesn't add to ascites.

Val received her regular chemo of Avastin and 5FU. Since her hemoglobin is low (8.2), she will also receive (2) units of whole blood. This will make for a long day. They will probably get out around 7 pm.

On the good news side, her CA 19-9 tumor marker was down to 1,200. Although this is still too high, the trend is down. Another piece of good news; she is scheduled for a PET CT at UCSD as another step toward considering SIR Spheres. This decision is still a way off since we have to get Val's muscle mass up first.

Nancy is going to Julie's tonight in San Luis Obispo. Werner and Dorothy Jacobsen have been kind enough to go out of their way and pick her up at USC on their way up to SLO.

I had a nice conversation with Gary Cook from Dallas this morning. His wife, Andrea, was diagnosed with cholangiocarcinoma in June of '05.

Thank you for your continued prayers beloved.

Monday, February 05, 2007

The Wild Animal Park

Val, Chris, and the boys went to the San Diego Wild Animal Park yesterday. The weather was glorious. The park is just 10 minutes from our home in Escondido. For all of you snowbirds, this photo was taken on February 4th! Val was on the phone with her brother Jeff. After looking more closely at the picture, I found it Spooky how much the girl in black on the left looks like Val.

Another busy week. Val's bloodwork from last Friday is in Dr. Rose' office. The numbers look good. This is the first step into our cautious consideration of Yttrium-90 SIR Spheres. Thursday is a chemo day at USC. Chris will be out of town and I am booked with an FDA Inspection so Val, Paul, and Nancy will be making the trip. 09:30 appointment time.

Aside from pain management and ascites, our biggest challenge is getting some muscle mass back on Val. She was 107 on her home scale last night. This is critically low. She has an appointment this Wednesday with the Nutritionist at UCSD Moores. Julie is going to pull together the planning necessary to get the nutritionist's meals delivered to Val. Char has graciously offered to pick up the cost of these meals. In talking to Trisha, a cholangio patient from New York, she indicated that a 150 mg. dosage of Tarceva had caused her to lose weight. Val is on the same dose so we are going to ask Dr. Lenz to reduce it to 100 mg or even 50 mg.

The author of Jude, a short letter found just before Revelation was Judas (not Escariot), one of the twelve apostles. He was Jesus' cousin. His father, Cleophas, was the brother of Mary's husband Joseph. It was Jude who, At the Last Supper, when Jesus promised to manifest Himself to those who heard Him, asked why He would not manifest Himself to the whole world. Jesus replied, "If anyone loves Me, he will keep My word, and my Father will love him and we will come to him and make our abode with him."

The letter begins; "Jude, a servant of Jesus Christ and a brother of James, to those who have been called, who are loved by God the Father and kept by Jesus Christ:".

"Called" in the original language is a very serious word that referred to an official summons from the court to appear.

The Court of Heaven has sent an official summons to every soul who has cried out to God Most High for mercy.

Who is worthy to receive this summons? John answers the question in Revelation 22:17, "whoever is thirsty, let him come; and whoever wishes, let him take the free gift of the water of life."

Beloved, you who have been called, when must you appear?

Jude answers the question in his doxology. "and now unto Him who is able to keep you from falling and to present you before His glorious presence without fault and with great joy - to the only God our Saviour be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen."

Beloved of God, the end of the matter is this. You have been summoned to appear. The date of your court appointment is written in The Lamb's Book of Life. You are kept in this life by the power of Jesus Christ. You will be presented to the Court of Heaven by Jesus Christ. You will be found perfect, without fault. And your spirit will overflow with great joy when God Most High pronounces the verdict of the court, "well done faithful witness."

As a college freshman, I pledged Sigma Alpha Epsilon Fraternity. The 13th week of pledging, "Hell Week", involved sleep deprivation, road trips, and other various types of abuse. At the end of the week, each pledge must appear before a court of approval. Unknown to the pledge, this is a "Kangaroo Court" populated by alumni who systematically tear the pledge down and then throw him out as a reject. It happens to every pledge. Most get over it. I did'nt.

I left with my "Big Brother", Tony Anzalone from New York. I swore to Tony that I would never set foot in that house again. Finally, he had to admit that it was all a ruse.

I tell you this story because I was not a christian at the time and it was a devastating experience. Now I look back at it with great joy knowing that The God of Heaven is the exact opposite of that group of "judges" who rejected me.

Prayer requests:

1. Val has been under too much stress recently. It is affecting her ability to grow stronger Please pray that she can pull the plug on all stress.
2. Pray for wisdom in our considerations of SIR Spheres.
3. Pray for increased weight and muscle mass.
4. Pray for wisdom on chemo selections. Pray for our plans to transfer from USC to UCSD


Godspeed