Kansas City Here I Come

Velda and I are going to Kansas City for the pre-transplant evaluation. If they like the numbers we will proceed with the transplant as soon as April 4. If not they may order more chemotherapy to get the numbers looking better. Here is our schedule. Pray for wisdom for the medical staff and us as well. At 9AM on Thursday will be my second bone marrow biopsy. It was one of the most painful experiences I can remember. Pray I don't cry like a baby. (I didn't last time)

March 27, 2013:
West Wood Campus
12:30 pm: Evaluation w/Haylie Colby – Social Service Workup. Out pt. BMT area
2:00 pm: Evaluation w/Joe Rorabaugh – Nutritional workup. Cancer Center – Level 2
3:00 pm: Evaluation w/Belinda Smith – Financial workup. Page when ready 917-2307
3:30 pm: Health & Physical - Out pt. BMT area.

March 28, 2013:
West Wood Campus
8:00 am: Labs - Level 3 - Out pt. BMT area. *** Nothing to eat or drink after mid-night.***
9:00 pm: Bone Marrow Biopsy- Cancer Center Procedure Room – Level 2
~You will need a driver with you for this procedure~
12:00 pm: Teaching & Education – with coordinator Tricia Rasmussen
~ Please bring your caregiver with you to this meeting ~

March 29, 2013:
KU Medical Center
7:30 am: ECHO/Resting- Mid America Cardiology, ground floor hospital entrance.
8:30 am: EKG - Mid America Cardiology ground floor. Walk in procedure.
9:00 am: Pulmonary Function Tests- 4th floor Sudler Bldg. Room# 4063
Please do not arrive before your scheduled appointment.
10:00 am: Apheresis Education –
11:00 am: Chest X-Ray - 2nd floor Out Pt. Radiology – X-Ray. Walk in clinic.
11:30 am: Panorex X-Ray - 2nd floor Out Pt. Radiology – X-Ray. Walk in clinic
12:00 am: Skeletal Survey-2nd floor Out Pt. Radiology – X-Ray. Walk in procedure

On the Matter of Money

. . . that they bring an offering: of every man that giveth it willingly with with his heart . . . Exodus 25:2

Every man according as he purposed in his heart, [so let him give;] not grudgingly, or of necessity: for God loveth a cheerful giver. II Corinthians 9:7

. . . as [God] hath prospered him . . . I Corinthians 16:2

The KU Medical Hospital estimates the amount of a bone marrow transplant (BMT) as $250,000. This does not include incidental expenses incurred as a result of trips that must be made to Kansas City for the BMT nor any follow up that could possibly arise. Our resources available are $125,000. Since the diagnosis, we have used nearly $20,000 of those resources locally. Considering the above statistics, our fundraising goal is set at $150,000. The cost could vary greatly depending on whether the BMT is complex or simple, cost reductions and other factors. Up to this point KU has routinely given us a 30% reduction on the bills thus far. If they continued, the fundraising goal would be lowered to about $70,000.

Christian Healthcare Ministries (www.chministries.org) is the source of the $125,000. They have also been working with KU Med as our advocates in cost reduction. Lori Perko is at the point in this aspect. She is shooting for a 50% reduction.

HelpHOPELive (www.helphopelive.org) is an organization we are using to be an accountability partner in the fundraising efforts as well as a clearinghouse for information. Because we are using them, all contributions will be tax deductible and can be made online and anonymously if desired.

In determining if and how to contribute, please consider the following steps.

1. Pray. Ask God for wisdom and guidance first and foremost. Let this be a time to focus on Him.

2. As God prospers you, check your heart. God wants you to give from a willing and cheerful heart. Do what makes your heart sing!

3. For those who live around Salina, come to the benefit dinner April 14 to celebrate God's faithfulness. If coming to Salina is not possible, mail in your contribution or donate online as God moves you.

Please pray:

that the all the medical providers would continue to give us at least a 30% reduction on bills.

That Christian Healthcare Ministries and specifically Lori Perko are granted favor in the eyes of KU Med

that God would continue to give Velda and I wisdom

for complete healing

Thank you

P.S. Tom Wilbur wrote an article published locally. It was quite humbling to read and it brought tears to Velda's eyes (she gave me permission to share that). He uses the $70,000 goal. The thermometer on www.helphopelive.org is set to $150,000 for  now until further notice.

Plateau and Joy

My numbers this week hit another plateau. That is about all I have to say about that. On the other hand, major developments spiritually. I  have talked about our theme of "counting it all joy" in trials (Romans 5:1-5, James 1:2--4),  Most recently here. Basically this "joy" has been an act of faith without much of an emotional response. This past weekend, while pondering the changes I have experienced thus far as result of the various trials of myeloma and circumstances with which it is associated, I experienced a real emotional response of joy! My prayer life has gone to a new level, which is something for which I have been praying for years. Before the myeloma, our family devotions had fallen in consistency and focus. We are now meeting much more consistently and have plenty to pray about. We have also brought back singing into our family time to the pleasure of all involved. There is more I plan to re-establish that has dropped from the "golden years" of family devotions. I have increased my consistency in spending daily time in the Bible and have returned to a more rigorous schedule of memorization. I plan to memorize John 14-17 (I already have 14-16), the sermon on the mount (I am the only member of my family who has not thus far) and Proverbs 1-9. I want to reclaim the book of James and Philippians which Joshua and I did together years ago, The 10 commandments and Deuteronomy 6:1-12. Anyway, the point is, when reflecting on these things, I got joy!

It's Working

"Looking good" and "It's working" were the distintive remarks from my oncologist this week. My kidney indicator went down another 2 tenths of a point (.2) so that it is within a half a point (.5) of the normal range. One of the numbers is lagging behind the other indicators as far as rate of decline. The goal is that they all should be within the normal range before a bone marrow transplant is done so this number could become a factor as to whether I proceed as planned with the bone marrow transplant or to continue chemotherapy for awhile to give the numbers a chance to be more ideal. With respect to the hypothesis I proposed in a previous post, today's results were not definite enough for me to make a connection with the results and my personal spiritual disciplines. On the other hand, I and my family benefitted significantly this week as a result of my increased faithfulness. I have recovered from the back incident to the point that I feel nearly full strength but not enough to do anything excessive. I am following the ER doctor's orders by not lifting anything over 10 pounds for a week. In the past few weeks I have developed another side effect of the chemotherapy. It is a little delicate in nature to describe so let's just say Velda bought prune juice this week. Thank you for praying.

Hello Everyone,
Its Velda, and I decided to add an update myself since it has been such a long time. This past week with all of the activity here has by far been the most challenging and quite frankly the most scary. Once we returned home, yes I was relieved but at the same time exhausted from the energy entended and by the help of the holy spirit to demonstrate self control while making decisions on how to respond. God reminded me during a quiet time just a couple of days later what he expects of us as his people and what kindles his anger: Because they believed not in God, and trusted not in his salvation:(Psalm 78:22). The psalmist then list all of the work he had done for the people, and this verse follows: For all this they sinned still, and believed not for his wondrous works. So then it is my prayer that I may remember this: And they remembered that God was their rock, and the high God their Redeemer. (Psalm 78:35)

Spiritual Disciplines: The First 2 Days

On Wednesday night I stated that I was going be faithful in my spiritual disciplines. My thought was that God was going to make it smooth sailing. On the contrary, the waters have been quite rough. I take steroids on the same day that I get my chemotherapy. I should take them by lunch. I forgot to take them to school so I didn't take them until around 4PM. As a result, when I went to bed my eyes were wide open and my mind was racing. Velda came to bed a couple hours later and I was still wide awake. The chemotherapy can occasionally cause leg cramps. This was the night that I had cramps in various places from my knees down in both legs. I had to repeatedly get up and stretch to relieve me of the discomfort. If I slept at all, I don't remember. I know that the last time I looked at the clock it was 2 hours before my alarm was to go off. Normally in a situation like this I would not get up with the alarm. I tell myself that sleep is more important and will skip personal and family devotions. Why did this happen? The purpose was for the difficult night to be a proving ground for my faith (I Peter 1:7). Just as gold is tested and refined with fire, fiery trials are for the same purpose. Praise God I did not rationalize. On Thursday I got up, had my personal devotion, led our family devotion and taught a full school day. It was difficult but I would not have known the extent of my faith without that sleepless night before. But the trial continues. After school on Thursday I purchased products to change the oil in my car. On the way to my car I tripped and fell forward landing on my hands and knees. My back had been tight since shoveling snow last Monday. I had seen the chiropractor and had experienced moderate relief. When I fell I experienced a lot of pain. I got up anyway and changed the oil in spite of the pain and stiffness. Afterwards we iced my back the rest of the evening as prescribed by the chiropractor. Friday morning I sat up but could not get out of bed. I told Velda and we iced my back again. When she came to remove the ice pack I was unable to move without excruciating pain. We called the chiropractor and he said that he could come by 11:30. We called our oncologist's office and were told to call EMS. We called EMS. They gave me a narcotic painkiller. (my first narcotic!) Once it kicked in the pain was reduced enough so that I was able to walk out of the house on my own power. The bonus was that I got my first ride in an ambulance as well. In the emergency room I was given a muscle relaxant which took away the remainder of the pain. My back was x-rayed as a precaution to check for a fracture. All clear there. One disc in my spine looked a little compressed but the doctor said that if I could walk then it was a non-issue. I walked out quite easily and painlessly. Overlapping trials are tough. As stated in an earlier entry, We glory in our infirmities, trials, tribulations etc. (II Corinthians 12:7-11a) We count it all joy when experience trials. (James 1:2-4, Romans 5:3-5) Why? It's because I try to keep in my mind the big picture. God wants others to see Christ in me. In order to do that He has to conform me to the image of Jesus. Sometimes it's like a potter with wet clay and I mold where he works somewhat easily. Sometimes it's like working with with precious metals or marble and the change is made with harsher methods. So when God brings fire or bangs on me with a hammer and chisel I rejoice through the pain because I know the end result will be that I "might be found unto praise and honor and glory at the appearing of Jesus Christ".

No Change

The adventure continues. There was practically no change in my numbers from last week. This is not what we were hoping for but we praise God in all things and thank Him for goodness no matter what it looks like to us. His perspective is much broader and I must continue to keep a "God's"-eye view in all of this.

Spiritually. I have committed to some spiritual disciplines in my life and this journey seems to have a trend that mirrors my disciplines. It is my goal to have a personal devotion every morning, lead family devotions each morning, memorize Bible verses regularly as well as some others. (Please note that this is anecdotal in nature and has not been recorded and processed in such a way to be considered statistically sound) Last week I was very consistent with my personal disciplines and saw some amazing results. This week was not as good. In fact, Velda asked me this week when was the last time I had my personal devotion let alone family devotions. Something that I was too timid to share was that I have had these recurring thoughts that the news seems to mirror my faithfulness. My next appointment is this Tuesday after school. It will be with the doctor so the numbers we discuss will be much more comprehensive. Through the power of God's grace I hope to be very consistent and faithful from now until that appointment. This will be a way of testing my hypothesis. I am not testing God or His faithfulness. He never changes. I am testing this stray thought that I have had for awhile. Since contracting myeloma, my family and I have learned about ourselves and God that are more valuable than gold. These lessons are more valuable than healing because our ultimate goal is to be conformed to the image of Christ. I wouldn't trade this adventure for anything. Please pray for complete healing but more importantly, pray for my personal discipline. I can hardly wait till next Tuesday. Thank you.

Progress

I went for my chemotherapy today and had some encouraging numbers. When preparing for treatments the nurses look at lab results that aren't as detailed as when I see the doctor so this is not comprehensive. First of all my blood levels were so high that it has been decided that I no longer need to receive one of the shots. Because my kidneys are not functioning correctly, they are not producing the hormone that tells my bone marrow to produce more blood. Hence one of my shots was simply providing my body with that hormone. Well the numbers were high enough that I no longer need that shot. And speaking of kidneys, I had the biggest change in my kidney readings to date. In the past my kidney numbers were decreasing about a tenth (0.1) of a point a week. This week they decreased one half (0.5) of a point in a week. That is a drop to the magnitude of 5 times the previous rate. In fact if my kidneys continue at this accelerated rate my kidneys would be functionally normally in 2 weeks. There are more numbers to look at when I have my monthly consultation with my doctor but I'm liking what I'm seeing today. Thank God for His work and thank you for your prayers.

No new meds

I thought I would update you on my "Catch 22" from the last blog. I haven't received any communication from the medical professionals so I assume no news is good news and I don't have to add another med to my present arsenal.

Mixed Bag

Today was my monthly checkup with my oncologist. Again most of the numbers are moving in the right direction. Another repeated theme is that the numbers are not going down fast enough. We didn't go into a lot of details today so I don't have specific numbers. A new development is that my calcium level has gone up. This is a complication because it interferes with the recovery of my kidneys. My kidney number did not fall this month but maintained. It needs to continue to fall as well. My doctor is considering giving me a drug that will take care of the calcium. The problem is that unless the kidney numbers are lower, this drug can have a detrimental effect on the kidneys. Let's see if you have been following this. My calcium level has risen. This has interfered with the recovery of my kidneys. A drug can lower the calcium level. This drug can have a detrimental effect on the kidneys when they are not functioning correctly. My kidneys are not functionally correctly. Anyone ever  here of the phrase "Catch 22"? It was quite an interesting conversation between the doctor and the nurse. I believe the plan is to watch the calcium level for now and, if need be, administer the drug at a potency that will effect the calcium level but not the kidneys. Otherwise, I continue to maintain my duties and activities in a relatively normal way. Please pray that on my journey to healing that I won't have to put another caustic chemical into my body and that Velda and I would have wisdom for the myriad of decisions that we face.

Spiritually. I am experiencing the abundant life in Christ as much now and in some respects greater than before the myeloma. God is faithful.