Sunday, December 22, 2013

Back in the Saddle

I have just completed my first 2 weeks of teaching and am now on Christmas break. I was quite nervous the first day because of many factors. I was a brand new face to the freshman and new students. I also didn't know whether to give my first day talk or to jump in and continue preparations for the impending performances. My principal, Linn Exline, wisely advised me to lay the groundwork so I mostly talked to my classes on the first day. Another interesting twist is that the students knew the songs better than I. There were a variety of interesting cues and tentative singing until we got acquainted with each other and I became acquainted with the music. I had 7 school days before the Winter Concert not to mention New Dawn performances and the start of musical rehearsals (musical = on average an extra 18-20 hours of work/week outside the classroom). I really hit the ground at a dead sprint compared to relative inactivity in the months preceding my return. The concert went exceptionally well thanks to the preparation done by my long term sub John Luce. John was an incredible blessing in that he taught many years of music before changing vocations and entering the ministry. During my treatment and recovery I was free from having to do lesson plans or worry how the classes were functioning because I knew that John was there and was skilled in vocal music instruction. John even cleared his schedule for the month of December just in case I started teaching and ran out of gas so that he could come and relieve me if needed. And as if he hadn't done enough, he came and assisted me in the final rehearsal and took attendance at the concert. Thank you John! The classes went very well. I realize that I am in that "honeymoon" season similar to the beginning of the year when students don't show their true selves but all in all I am enjoying a great start. On another note, we have had a wonderful winter storm and feel confident that we will have a white Christmas.


In our back yard is a bird bath that serves also as a snow gauge because it is level and and flat. The Creer's unofficial count was 11 inches. We are looking forward to sledding and tobogganing (we own a 6 footer) on Monday.



I feel nearly 100%. I plan on shoveling, sledding, working at school, visiting, eating etc. in the days to come. Thanks for praying. God is good.

Friday, December 6, 2013

VGPR

Very Good Partial Remission (VGPR). My cancer is in remission! VGPR is the type of remission. I am constantly learning things. To give you perspective, the doctor pointed to just one number this time and he called it the "mother-lode" of indicators. This indicator started out at around 33,000 when I was first diagnosed (check here). It should normally be no higher than 2. Today it registered at 3.04! The doctor said that I am a "hair away" from complete remission. Now I am  into a maintenance routine. The doctors told me from the beginning that a bone marrow transplant (BMT) is not a cure for myeloma but a treatment. I knew that maintenance was coming if the BMT was successful (which it was in a big way). My cancer is now classified as a chronic disease similar to diabetes. It will not do any damage as long as I am faithful to the routine that is prescribed and as long as it doesn't awake from remission. We are praising God for the results and also for the clearance to resume a somewhat normal schedule. I am returning to work and I have no dietary restrictions. I still have to protect myself from diseases and infections so I won't hug you if you are sick. Thank you for praying.

P.S. I will be getting bi-weekly test for awhile to keep an eye on things so there will still be occasional updates ahead as well as the 180 day check up (mid March) which will be as comprehensive as today's.

Sunday, December 1, 2013

Day 100

Some of you have mentioned that you haven't checked my blog in a while and I confessed that I haven't blogged for a while. Today being a milestone of sorts I decided to update today. Ordinarily I would be getting a check up today but the clinic isn't open on Sundays. The closest they could schedule me was this Friday so my 100 day check will be on day 105. I have had a few labs along the way and I am progressing quite nicely. My energy feels near normal and my appetite continue to improve. The 100 day check is the most comprehensive of the latest ones. Up until now the tests where making sure that I was recovering from the trauma in good fashion. This time the tests will determine if the cancer is in remission or not. I am pretty hopeful because of the way I feel. I am also hopeful that my immune system is in good enough shape so that I can return to teaching. The Winter Concert, which is next, is my favorite concert of the year. I have also experienced the return of a hairline. (Click here to see a contrast from earlier "hairless" days)

This  past week we travelled to Dallas to spend Thanksgiving with Velda's family. The nearly eight hour drive Wednesday left a little to be desired as far as excitement.


When we arrived in Dallas we went straight to the American Airlines arena to watch the Dallas Mavericks defeat the Golden State Warriors 103-99. For you non-sports fans, it was a professional basketball game (i.e. NBA). We had purchased nosebleed seats but Velda's sister, Sherri, arranged for us to have "party suite" seats through a friend who worked at the arena.


After a fabulous meal hosted by Sherri with additions from Mrs. Crawford, Velda's mom, we visited the holocaust museum of Dallas on Friday. Sherri is pictured in blue below next to Michaela. Joshua is facing away in a green shirts that says "Grrrrrroundhog!" Salina South Musical Theatre alumni will understand the significance of the shirt.


You should hear from me in about a week. Thank you for praying. We plan on praising God no matter what the doctor says and are quite hopeful that the news will be outstanding.

Saturday, November 2, 2013

Random thoughts

Recently our family was blessed with a new car ( a 98 Dodge Intrepid in good condition
with 200,000 miles on it) by the Charvat family, which I was allowed to drive. I also was blessed by the news that I received my IFSAC seals, which will hopefully allow me to use my firefighting certifications in other states. Please pray as I prepare to take two more tests one written and one physical.

Tuesday, October 22, 2013

Good News with Lessons

I had my 60 day checkup today and all looks good. I was told that the indicators seem to be pinting to the possibility that the cancer isn't active. The lesson I'm learning is patience. Erring on the side of caution, the doctor decided that I can't go back to school until the first week of December. Velda had to remind me that all the news we received today was good even if all my expectations were met. Let's face it, I am still alive and the cancer seems inactive. We rejoice in the news and rejoice that the journey is not over. More good news is that I can take over the counter drugs to stave off the excess amount of gastro-intestinal fumes I (and my family) have been experiencing. It has quite uncomfortable for me in public at times and quite unbearable for them at home at times. Now that I am clear to take some drugs to remedy the problem, I suggest you buy some stock in GasX because it is going to experience an increase in sales. My mustache and eyebrows are also making a nice comeback. The fuzz on top of my head is coming along but it is not worth a picture yet. You will just have to settle for a thousand words. I can go just about anywhere and do anything except go to school. So you may see me (some already have) around town riding the bike or walking to get exercise as I run errands. You might also pray for Joshua because while he is home he gets all the jobs Velda asks me to do. Thank God for his servant attitude and work ethic. I am also looking forward to 100% energy (about 75% at present) so that I can do more around the house while I have the time. Again, thank God for the good report and the lesson on patience. And thank you for praying.

Monday, October 7, 2013

Another Step Forward

On September 23rd the doctor gave me limited freedom to move about the country. I no longer wear a mask in public and can shake hands and hug as long as the person in not sick. It was just in time because we had planned to see Joshua graduate from International ALERT Academy on Thursday the 26th. He finishes tomorrow by going to Hutchison to take a test that will certify him nationally as a firefighter/EMT. Next on his agenda is getting a job. Anyway, we left on Wednesday the 25th and didn't return until late Wednesday night October 2nd. It was just what we needed. We stayed about 30 minutes from the campus at Holly Lake Ranch. Some friends of Velda allowed us to stay in there lodge on the lake. We ignored all alarms. There was fishing (Grace and Michaela were successful), canoeing, paddle boats, biking and hiking. We also read books and watched DVD's. Since then I have noticed enough energy to go bike riding myself. I have ridden around town a couple of times with Velda. I'm not full strength but moving in the right direction. Next checkup in a couple of weeks. We are hoping the doctor says that I can return to teaching.

Thanks for praying.

Monday, September 23, 2013

Big Jump

I had my Day 30 checkup today (even though it was Day 31). We had a premonition on how it was going to turn out based on my weekend. On Friday night I declared I wanted a Braum's burger, fries and a cherry limeade. That really turned some heads in the Creer home. I hadn't had an appetite for quite some time. We were praising God for that even though Velda couldn't honor the request. I cannot eat out. So she bought some burger meat and made me a great meal. The second answer to prayer was that I tasted everything I ate that evening. I have been eating normally and tasting everything ever since. Lastly is a sudden increase in strength. I had been walking for 10 to 15 minutes around the first floor of the house for exercise and then sitting down to take a rest. This weekend I started walking around the block (~.6mi) twice a day. So we were expecting good lab results and weren't disappointed. Velda is the lab tech for the family. When she read the lab she unashamedly let out a shout that might have been foreign to most of the ears of the staff at the KU clinic. we thank God and we thank you for your prayers. Caveat. These are not indications of the effectiveness of the transplant. The check up on Day 60 (3rd week of October) will begin that process as they start to take tests that measure if I still have any cancer since the transplant. Right now we are enjoying how I feel and that most of the restrictions on my lifestyle have been lifted. The doctor also said we will discuss returning to teaching on Day 60. This is also incredible because that is 40 days sooner than he originally estimated. Returning at this time seems perfect to me because it will be right after the first concert and the beginning of the 2nd quarter.

Please pray that Day 60 will show complete remission.
                   that the doctor is given the knowledge of the best time for me to return
                   (hopefully Day 61)

Thank you.

Tuesday, September 17, 2013

Mixed Blessings

Today is Day 25 since completing the bone marrow transplant. I had a check up on Day 21 in Kansas City. My numbers are roaring back to normal! Many of the blood components and chemistry of my body are in the normal range. (e.g. white blood cells, platelets, potassium and magnesium) This is in stark contrast to before the BMT. My body responded so slowly before the BMT that the transplant was performed 4 months after it was originally scheduled. Now my body is making a great comeback. The doctor at KU was quite pleased. Physically my body is taking its sweet time to recovery. The process cleaned out my gastro-intestinal tract as well as my bone marrow and I feel fairly weak. The stems cells are taking care of the bone marrow, my GI tract is getting little or no help to rebuild. I need to eat but have very little taste and no appetite. My digestion is not quite normal and uncomfortable at times. Our strategy is that instead of trying to eat three square meals a day that I snack (i.e. graze) all day. The most important thing is that I maintain a discipline of appreciating each day the Lord gives me while looking forward to when I will feel better.

Please pray that I eat and drink even though I can't taste the food and have no appetite. I will help my body keep pace with my internal numbers.
Please pray that I start each day with the thought that it is a day that the Lord has made and that I will rejoice and be glad in it. No matter how I feel.

Thank you.

Tuesday, September 10, 2013

Horse Latitudes

Back in the heyday of sailing ships there was a place in the Atlantic Ocean where there was rarely any wind. The ships would drift for long periods of time before getting free. While waiting, it was common for the sailors to throw overboard the livestock because they had become a detriment. It was common to see horses and other animals floating from previous vessels in the water hence the name "Horse Latitudes".

I feel like I am in the horse latitudes of the post bone marrow transplant (BMT) experience. I am fairly lethargic. I have no appetite. My taste buds are still shot. I am in a "tight bubble" meaning I cannot leave unless for a very good reason. I do laps around the first floor of my house for exercise.

On the bright side, I am at home and enjoying Velda and the girls. One of my main contributions to the household is shelling black-eyed peas from the garden. I have time to read the Bible and other things as well as pray. We've watched some interesting videos together as well.

I met with the Salina doctor today and sang his old song "Why aren't you sick?" I told him I may look fine but I don't feel so good. He assured that this was all normal transitions for post BMT. He said my numbers looked good and that things seem to be going in the right direction. It is too early to tell how effective the BMT was. We go to KU Med on Friday and will update at that time.

Please for the effectiveness of the BMT
My ability to rejoice during this time
I accept the best time to return to the classroom (and that it will be soon :D)

Thursday, September 5, 2013

Correction

In my last blog I said that I can't have visitors. That was totally wrong. I can have visitors so come on over.

Wednesday, September 4, 2013

Honorably Discharged

KU Med announced today that they are discharging us from their care this Friday (Day 14) and are transferring me to the care on my Salina oncologist. Translation: We're coming home this weekend! They didn't even bother today to see of my composite number was over 500. Praise God! Some parts of my complete blood count are already in the normal range. I still will not be leaving the house much until Day 30 (September 22) nor should I have visitors before that time. Hope Lodge, our KC residence, is sponsoring one of my most favorite meals tonight. I look forward to eating hot dogs with all the fixings even if does taste like cardboard. This is a great victory but the war is not over. I need prayer that the stem cells rebuild my bone marrow without cancer. That may not be fully determined until Day 100 (December 1). Thank you.

Tuesday, September 3, 2013

Turning the Corner

The first good news is that I feel well enough to blog.The last time I blogged I was entering the final stages of the bone marrow transplant (BMT). I am pleased to announce that it is finished and am looking forward to no more caustic chemicals being put into my body. Let me give the chronology since the last blog.

August 20 (Day -3). Chemotherapy
August 21 (Day -2). Chemotherapy
August 22 (Day -1). Rest day
August 23 (Day 0). Stem cell acquisition
September 2 (Day 10). Tests show that stems cells have arrived are beginning to engraft themselves. Isn't this amazing!
September ? (Day ?). Tests show that the stem cells are fully engrafted and I am sent back to Salina to stay! I will still have to report back to KU Med to periodic checkups. This can happen as late at Day 30 but often will be reached sooner.

What was I going through? August 20 - August 28 I descended into an abyss that I would not wish even on a Central Mustang. From August 28 - September 2 I experienced fever, chills, nausea, vomiting and diarrhea. All this was overshadowed by the fact that I had virtually no energy to function. Velda said she was trained for this after taking care of 3 infants using cloth diapers. I developed an irrational fear of swallowing. I was afraid of what the results might be. It took all of my will power to take my meds. I did not eat or drink anything and required fluids through an IV. I also developed an irrational fear of the bathroom because of what usually went on in there. One time I walked in to brush my teeth and physically shuddered as I stepped in the door. I was severely challenged to be thankful and rejoice. God is responsible for everything in my life and each symptom and circumstance is working for my good in His hands.

Yesterday the numbers took a turn for the better. I didn't fell any better but was told the body will respond with the number. Today the numbers were significantly better and for the first time in days I ways able to walk without leaning heavily on Velda or using a wheelchair. So now that the BMT is done I have new benchmarks. KU said it will be a very good sign when a certain indicator is over 500 for three days in a row. Today that indicator was well over 900! My energy level is on a bumpy ride in the upward direction. I spent 5 minutes on treadmill today which was more walking than I have done in a day for the last several days. Tomorrow I will try 2 5-minute sessions, one in the morning and one in the evening and then just try to increase the times and speed gradually. I still get wiped out physically and just have to lay down for awhile, but not as much and certainly not all day. I am drinking and eating normally and approach the bathroom with no fear. My taste buds are shot so everything tastes like cardboard.

Please pray for 2 more consecutive days of 500+
           I have the discipline to chew and swallow even though it is not necessarily enjoyable
           Pray for Velda's strength and encouragement, She has been and is still taking care of a 170 pound infant right now.
           It will be determined later the success of the BMT. Pray the it exceeds expectations.
Thank you. 

Thursday, August 29, 2013

At All Times

The following verses are ones that I quote as I awake each morning and I encourage all you prayer warriors to join me in this psalm: I will bless the Lord at all times: his praise shall continually be in my mouth. My soul shall make her boast in the Lord; the humble shall hear and be glad. O magnify the Lord with me, and let us exalt his name together. I sought the Lord and he heard me, and delivered me from all my fears. They looked to him, and were lightened: and their faces were not ashamed. This poor man cried and the Lord heard him, and saved him out of all his troubles. The angel of the Lord encamps round about them that fear him, and delivers them. O taste and see that the Lord is good: blessed is the man that trust in him. O fear the Lord ,his saints; for there is no want to them that fear him. The young lions do lack, and suffer hunger: but they that seek the Lord shall not want any good thing. (Psalm 34: 1-10)
An additional one also came to mind this morning:
O come, let us worship and bow down: let us kneel before the Lord our maker. For he is our God; and we are his people of his pasture, and the sheep of his hand. Today if you will hear his voice.(Psalm 95: 6-7)
Yes, we are called to worship Him at all times, even at such a time as this like Abraham of old who told his servants wait here while I and the lad go worship, and come again to you. (Genesis 22:5) This is my request of the body of believers.
Thank you,
Velda

Wednesday, August 28, 2013

Recovery Time

Here is another update to the blog done by Michaela since my parents are very busy for the time being.

The chemo and transplant went very well last week. The chemo was Tuesday and Wednesday and they gave my dad his stem cells Friday.
Well, that turned out to be the easy part. My dad has to go to the clinic once a day so they can check his vitals and do a little blood work. They also started giving him fluids since his body needs to flush out the chemo. He is very weak and doesn't have an appetite. He is eating ice chips but has no desire to swallow.
This morning my mom had to use a wheelchair to get him to the clinic as well as help him out of the shower since all his blood levels are very low. The doctor said to expect mouth sores and a fever soon. He also said the next five days will be the worst and then he will begin to take a turn for the better. My mom says "the ugly is about to get uglier and I'm already tired."
Thankfully both of them are resting well at night.
Please pray that God sustains both of them over the next few days & for Eddie's blood counts to recoup from the transfusion etc.
Please pray whenever you think of our family. It is the best way to help.

Monday, August 19, 2013

The Final Stretch

Tomorrow I receive chemotherapy that is rated 10 on a scale of 1-10. It will be administered over 2 days. I will get to rest one day. Then I get my stem cells back. After that the results will be checked for effectiveness of the procedure, wait for my body to recover and then go home. It will take 3-4 weeks to recover. After that I go home. I believe I can see a light at the end of the tunnel. Thank God.

Thursday, August 15, 2013

A New Record

We have finished harvesting stem cells today and will come home tomorrow for the weekend. Everything seems to be moving in slow motion. On Monday my complete blood count reached a level to where I could start the stem cell harvesting. This can take one to three days. We were hoping for one day. My blood was tested on Tuesday to see how many free stem cells there were. I needed a preliminary minimum score of 10. I came in at 3. By the way, I had been taking shots to stimulate my stem cell count since August 2 so to have a 3 on August 12 was a little disappointing. KU said not to worry, the numbers will rise. On Wednesday the preliminary count was 10.14. Don't celebrate too soon. That just allowed me to start the process. Now I had to collect enough stem cells so that the actual count showed a 7.5. On Wednesday I scored a 1.66 for the actual count. At this rate it would take 4 days of collection. Before I go on, I should explain the collection process. We would show up at around 6:30-7AM and take a blood test. We then would wait about 90 minutes for the test results. Then I would have an IV placed in the crook of both of my elbows. I had to keep the left elbow as straight possible which was taking blood out. My right arm could move a little for emergencies. (e.g. scratching my nose) I had to remain in this position for 5 hours. The blood would go into a machine that collected the stem cells before returning my blood to me. After that we would have to wait for post-procedure blood tests to see how my body fared in general. Now you know why we wanted to get done in one day. After my first days performance there was basically an attitude that I would take at least 3 days. I was given a hormoneWednesday evening to help boost production. Today my preliminary count was over 34. There was guarded excitement on the staff and the word "world record" was mentioned in order to reach an actual count of 7.5 considering my first day's performance. At the end of the day I was told that I was done. My total count for 2 days was 7.38. Not a world record but I believe I have set a new American record. There were high fives and general celebration among us and the staff. The only hitch is that this process takes some blood along with the stem cells. Well my blood was so low that I needed a transfusion before being released. Bottom line is that phase 1 is done successfully and we are going home tomorrow until we start the final phase Monday August 19. Velda and I have been learning a lot about patience and waiting to see what God has planned for each day. I hope that I have learned enough because I am ready for the process to speed up. That kind of sounds like I haven't completely learned my lesson. Anyway, we will keep you up to date on the next steps and the "tentative" schedule. In the meantime pray for a refreshing time at home and that our loins be girded for what is ahead. Thank you.

Monday, August 12, 2013

Great News!

We are not going home! The blood numbers have alligned and we start the process of harvesting stem cells tomorrow at 7AM. In addition, if the numbers had not aligned, we would still stay in KC. The doctor told me that even though things are going great and no procedure was being done lately that requires exceptional medical expertise, should something go awry I would want to be within 20 minutes of this clinic because this is all they do and they are available 24/7. KU has experienced a multitude of complications and are especially equipped for those contingencies. Knowing this, we are prepared and are hoping for more boring days to come and will appreciate them much more than before. Tomorrow we will report to collect stem cells. My blood will be checked to see if the stem cells have been kicked out of the bone marrow. If they are present in the blood, then they will start collecting right then. If not, then they will give me a drug that will loosen them and I wait a day and try again. It is amazing that I am excited over an unanswered prayer. God, as always, has the best plan. On the other hand, God says " . . . ye have not, because ye ask not". James 4:2b. So here is the next request. Let's pray that the stem cells are in the blood and enough of them are collected the first time if it is His will. If not, then we will rejoice in knowing He had an infinitely better plan. Thanks for praying.

Saturday, August 10, 2013

There's No Place Like Home

Imagine yourself hearing the Jeopardy theme in the background as I relate our last 6 days. We are simply waiting for my numbers to align in order to collect the stem cells. Each day we go to the lab. They take my vital signs (all good). They next do blood labs (all progressing in the right direction). Maybe talk to a nurse or doctor. Go back to Hope Lodge and try to occupy ourselves until the next day. Velda and I don't mind waiting because it is part of the process. Today it occurred to me that nothing special to this clinic is being done to me. So I asked. "Could the things that you have been dong to me the last 6 days be done in
Salina?" The attending nurse without hesitation said "Yes." Then why can't I go home and have these simple tests done there?" "When the numbers are right you would have to be here within 24 hours." "I could be there in 3 hours after you call me." I paused without speaking. She said "I don't know why these things couldn't be done in Salina. Ask." I intend to on Monday. They prepared us for this week of waiting at the beginning because that is the usual the time frame for the body to recover. If I had known at the time, I might have pressed this point back then. We will do whatever is the best practice. Please pray that coming home Monday falls within the parameters of best practice. I will blog again on Monday. Thank you.

Sunday, August 4, 2013

Side Effects. The sequel

We left for Kansas City early Thursday morning for what was billed as a 3 hour appointment. This would be similar to a 3 hour tour for those of my generation. It started at 9AM and at 2PM the nurse announced "Now starts the 3 hour part". I should have been forewarned when all the proceedings leading up to the 3 hour part was putting fluids and anti-nausea medicine into by means of an IV. The 3 hour part was to give me chemotherapy that was, of course, more potent than my previous rounds (maybe they should have said "combined"). Another hint that evaded me of things to come was that they gave me a backpack with 2 pumps hooked to my PICC line. One was to continue to administer fluids as well as potassium (the potassium part will come into play later) while the other was to pump anti-nausea medicine on demand. They said to push the pump at the slightest hint of nausea. I used to think that I was a fairly intelligent person and could ascertain even some of the minutest subtleties but  I sure missed what was coming. I've decided to discuss the potassium now in my defense. When a person has diarrhea they will lose potassium. I don't think that is common knowledge. So we left the clinic at 6PM and ate supper at a salad bar. Wow, what a mistake. Anyway, one of my pumps starts beeping because it was malfunctioning. To those of you who follow my blog regularly this may sound familiar. If not click here. We were told at the clinic that if anything goes wrong to call the number on the side of the pump and they would talk us through the solution. We called the number and told them it said "Code 10". They said that it meant "motor failure" and that there was nothing they could do but we should call the clinic. The clinic asked which pump failed and I said the fluids one and they said that at least the anti-nausea one was still working and that was more important. So about midnight I felt an intense headache and thought "this is not nausea" so I didn't push the pump. I have a high tolerance for headaches so I didn't bother Velda from her sleep. About 3AM I couldn't take it any more so I awakened Velda to find out that we didn't bring pain relievers. To her defense we rarely have a need for them in our family. So we get in the van and go to get relief. At this point I feel nausea and press the pump for nausea. It beeps indicating that it is malfunctioning. We can't call the number on the side of the pump because Velda is driving and I am vomiting out of the passenger window. When we get home Velda calls the number because I am indisposed and the instructions given got the pump working but it did not stop my vomiting. The pump will not reset for 15 minutes so as not to overdose. Believe me I was watching the clock. Oh did I say that when we got back that the diarrhea started? My next appointment was for 1PM. So, if you count, this lasted for 10 hours. When we got to the clinic I could hardly sit for ejaculations coming from both ends. They finally got me settled at which point the attending nurse said "We just started using these new pumps and I don't think they are as good as the old ones". When we were finished I was feeling pretty good so we went to the Nelson-Atkins Museum of Art armed with a new pump. Absolutely incredible place! Part of the way through I felt nauseous and pressed the pump and it beeped indicating . . . We called the number and fortunately the nausea subsided without episode before they solved the problem. The clinic also gave me some pills as a backup and they are working just fine. Otherwise things are going as planned and my numbers are being evaluated as :"very good". Thanks for praying.

Monday, July 29, 2013

Official Confirmation

KU Med liked the numbers so we start the bone marrow transplant (BMT) this Thursday. Here is a rough schedule.

August 1. Chemotherapy an KC. This was added in addition to the (BMT) protocol because my myeloma has been resistant. This is bad stuff and I will not proceed to the next step until my complete blood count (CBC, red blood cells, white blood cells and platelets) have recovered from the shock. I will stay in KC until I complete the next step.

August 10-12 (13?). Apheresis in KC. This is the harvesting of my stem cells and their subsequent freezing for storage. The start date is approximate based on my CBC. The length of time is also around 3-5 days. It will conclude when they have enough stem cells for at least 2 BMTs. This is just for insurance in case another BMT is needed down  the  road. After this I return to Salina.

August 19-22. BMT in KC.
     August 19-21. Chemotherapy for the purpose of killing the myeloma in my bone marrow. On a scale of 1-10, this is level 10 chemotherapy. This stuff will kill other things in my body besides the myeloma.
     August 22. Stem cell infusion for the purpose of replenishing what I lost in my bone marrow from the previous step.

August 22-September 19?. Stay in KC until my CBC (and the rest of me) returns to normal. This can take up to 4 weeks.

The BMT is the golden ticket. KU Med is very optimistic that I will experience complete remission. Caveat. As far as the present advances in medical technology, there is no cure for myeloma. The BMT just sets the clock of the prognosis back by 15-30 years. A few other thoughts. In 15-30 years it is very likely that a cure would be found. In 30 years I would be 86 which is a ripe old age. And last, God has the last word.

Big prayer request. There is a chance that I could be a part of a clinical trial. Please pray that I am accepted because the company sponsoring the trial would pay for a large part of the BMT. KU Med is working hard to get my acceptance into the clinical trial. The trial changes the protocol of the BMT slightly and has shown thus far that it is at least as effective as the present protocol. The clinical trial is trying to determine if there is any improvement over the present protocol.

Thanks for praying.

Tuesday, July 23, 2013

Unofficial Confirmation

We had an appointment today at KU Med. The doctor said it was a "well baby" check. He was not aware of all the testing done in Salina on 7/15. We had a copy of the incomplete results I had picked up. "I like what I see here" was his response after a quick perusal. Afterwards we got a phone call from our nurse/transplant coordinator. She had received the complete results and was scheduled to present them to the doctor tomorrow. She said that the results looked good enough to proceed and to plan to start next week. The doctor has the final word so unless they call me in the next few days, we will have to wait until our next appointment on 7/29 for the final word. On another note Velda and I out headed to CA to celebrate my mom's 80th birthday and our anniversary. We also consider it our last fling before the ultra restricted life of a post transplant patient and his caretaker. Thanks for praying.

Saturday, July 13, 2013

A Puzzlement

On April 14th we had 2 wonderful benefit dinners at my church. We are trying to solve a puzzle. Michaela played music out of a book which we haven't seen since. I will give the details and see what happens. She doesn't remember the title of the book. All songs are piano arrangements
Songs in the book:
As the Deer
Give Thanks
Shout to the Lord
More Precious than Silver
Lord I Lift Your Name on High
Shine Jesus Shine
El Shaddai
A Shield about Me

Sheet Music in the book:
In the Gap Theme Song (written my a co-intern when she was in OKC. This is big as far as sentimental points)
Chariots of Fire
Some obscure song on dark pages

Help us if you can. Thanks.

Relay for Life Link

Here is the link to the speech. I have included and an outline because my delivery wasn't too smooth and I didn't handle the mic well.

Relay for Life speech

I am a Christian, a follower of Jesus Christ, so this shapes my whole life perspective and this talk.

My purpose is to encourage all associated with cancer to flourish but it will require a brief journey through darkness.

There is an elephant in the room that is being ignored with respect to cancer and life in general. It is not mentioned and yet it is there. It is called death. Death is inevitable. If a cure is found and cancer is eradicated from the earth, we will still die. The Bible echoes this.

Ephesians 5:15-16. "See then that ye walk circumspectively, not as fools but as wise, redeeming the time because the days are evil."

Why would God say that the days are evil? It is because each day brings us one day closer to death, therefore we should spend our time wisely and not foolishly.

How does this relate to flourishing? The Bible has more to say

Psalm 118:24. "This is the day that the Lord hath made. We will rejoice and be glad in it."
John 10:10b (Jesus speaking). "I am come that they might have life, and that they might have it more abundantly."

God is our designer (Psalm 139:14a. "I am fearfully and wonderfully made"). It would behoove us to follow the user manual He has given us. He is obviously wanting us to get past the "evil" inherent in each day we live (one day closer to death) and to live each day as He as designed us to do.

Since contracting cancer, a constant theme has been to keep a positive mental attitude (PMA). Studies have shown that this will help but it is not specific enough nor very instructive. The Bible has much better advice. Here are 3 of many and I have organized them in levels. You (hopefully) can hear the expanded version with my life examples on the video.

1. Honest to God. Tell God exactly how you feel with your voice using all of the emotion you are feeling at the time. Insert thankfulness periodically.
Philippians 4:6-7. "Be careful for nothing but in everything by prayer and supplication with thanksgiving, let you requests be made known to God."
Psalm 3:4. "I cried unto the Lord with my voice and He heard me out of His holy hill. Selah."
Read the Psalms regularly. It contains about the whole gamut of emotions and you could find one to pray back to God.

2. Find and journal positive benefits from your circumstances.
Romans 8:28. "And we know that all things work together for good to them that love God, to them who are the called according to His purposes."

3. Work for the benefit of others.
Galatians 6:9-10a. "And let us not be weary in well doing: for in due season we shall reap, if we faint not. As we have therefore opportunity, let us do good unto all men . . . "

4. Grace
Titus 2:11-12. "For the grace of God that bringeth salvation hath appeared to all men, teaching us that, denying ungodliness and worldly lusts, we should live soberly, righteously, and godly in this present world."
Even though these sound simple and easy they are actually quite challenging. God recognizes this. (Psalm 103:14. "For He knoweth our frame; he remembereth that we are dust."). When we fall short of these standards that God wants us to keep we must acknowledge our missing the mark (sin) and our general nature (iniquity). God then steps in because we are putting Him in His rightful place and infuses us with grace which will teach us to deny the bad (grumbling, murmuring, self-pity etc.) and live in a way that flourishes under any circumstances.

Friday, July 12, 2013

Relay for Life

I will be the keynote speaker this evening at Relay for Life. My part starts at around 10PM at Salina Stadium.

Wednesday, July 10, 2013

What Hit Me?

I got up this morning feeling pretty bad. I couldn't do much else but lay around and dose in and out of a semi-state of consciousness. No apetite at all. Bad taste in my mouth. If any of you suggest that yesterday's omelet could be the culprit all I have to say is that IT WAS WORTH IT. Boy was that a good omelet. Anyway, I have somewhat recovered now and can move around without dizziness and have had my first meal (yogurt and toast). Velda and I will go walking this afternoon, most likely inside the mall. The battery of tests and x-rays start Monday. KU has tentatively scheduled the bone marrow transplant process to start July 23. They set everything up even though it may have to be cancelled if the test results aren't good. We learned that back in April. So if KU stays true to form, we should find out about 48 hours beforehand if it is good to go this time. Let's pray that we proceed. Thank you.

Tuesday, July 9, 2013

Side Effects!

I hope this means that the chemotherapy is working. Today was the last day of the 4 day treatment and it was the roughest since this all began last summer. I was fairly lethargic and semi-nauseous which was culminated by vomiting 3 times before being discharged this afternoon. I did recover quick enough to go to IHOP with my family later in the afternoon. I had a spinach and mushroom omelet with orange juice. Next is a series of tests to see if the chemo has knocked down the myeloma far enough for the bone marrow transplant to do any good. There must be as little cancer posible (preferably none at all) or else the stem cells would tainted and the myeloma would be likely to return. Thank you for your prayers.

Friday, July 5, 2013

Playing Hardball II

I'm in the hospital again for round 2 of intense chemotherapy. 96 straight hours of chemotherapy administered through a PICC line that enters my body in the artery of my right arm and snakes it way to about an inch of my heart. I am in room 412 and can receive visitors. This is 23 days since the beginning of the first round. (June 12-16) Of all the horrific possible side effects that I could have experienced, hair loss and a few minor mouth sores were all that happened. I have had my first hospital meal and am thankful for the provision. I am also thankful that Velda is bringing me my meal this evening. ;) I am not as nervous this time having gone through this once already. I have no reports as to how the cancer has been affected because no tests were given in that respect. My kidneys are still near normal range which makes for the bone marrow transplant (BMT, the next step) to be a simple process. Please pray that this process does what is supposed to do which is to put the cancer completely in remission. The farther the cancer is in remission, the more effective the BMT will be. Thanks for praying and all the encouragement.

Saturday, June 29, 2013

Hair Today Gone Tomorrow

My hair started falling out Wednesday. I didn't realize that it falls off everywhere there is hair. So far my eyebrows and mustache are still in tact. I decide to blog today instead of waiting till Monday because many who are following this blog attend my church and this could help make the change less drastic. I had Velda cut it off today because the top of my head was quite splotchy. I'm glad that this was not 30 years ago when afros were in. The biggest challenge is to get my scalp to get close to the same color as the rest of me. It hadn't been exposed to the sun. I worked in the garden without my straw hat to help but I haven't seen any difference. Trying to get a tan is a new experience for me. I hope I don't sunburn the top of my head. Anyway, I'm just allowing God to make the decisions and He must want me bald for awhile. I have no idea how the chemo affected the cancer. The labs are just to keep track of my blood counts. They have decided to do this chemo again July 5-9. The nurse checking me did say that I seem to just fly though the first chemo fairly unscathed as far as side effects. The second will not necessarily go the same but I will have a good idea what to expect. I also feel like I have a better ideal of what the bone marrow transplant will be like. Thanks for praying,

Monday, June 24, 2013

Feeling a Few Side Effects

This is day 8 since getting hit with the hard stuff. It was pretty smooth sailing until today. Days 10-14 are supposed to be the worst. I feel a little achy in the joints and there is a sore on my tongue. I'm also a little low on energy. Nothing major. My white blood cell count is steadily descending which means I have to be very conscientious with my hygiene (no 5-second rule on food that hits the floor) and avoid people that show symptoms of infections. I still have all my hair. God is good.

Tuesday, June 18, 2013

Home Again, Home Again Jiggety Jig

I came home from the hospital just in time for my Father's Day meal. One of my all time favorites. Hamburgers and hot dogs with potato salad. I never got really sick in the hospital but was informed the worst was yet to come. My health should descend the next 10 days to 2 weeks as my blood count goes down. I didn't blog yesterday because I had a lot of errands to run. I don't feel great nor do I feel very bad. Somewhere in between. The feelings also come and go. This morning I walked a little over a mile before breakfast and felt better as I went. When Velda was  making breakfast, the aroma was making me nauseous but then I ate quite well and enjoyed it. This seems to be a dress rehearsal for a bone marrow transplant (BMT). I have a few pages of things that I can and cannot do that sound very familiar to BMT protocols. Stay away from sick people, exercise etc. My primary caregiver is going to be nurse Grace. I decided that Velda had enough with a full house again. Grace flew through her first day on the job (yesterday) with flying colors. Speaking of a full house, what a blessing it has been to hear all the chatter again and having all five of us for family devotions. I will update in about a week.

Saturday, June 15, 2013

One Day More

72 hours down, 24 to go. I have experienced very little side effects if any at all. Praise God! I did tell the doctor that he could make me as sick as he wants as long as I am rid of the cancer. I had a little nausea last night and this morning. One of the protocols is to squirt anti-nausea medicine in my IV each day. That seems to be working just fine. The biggest proem is the whole contraption to which I''m connected. It beeps whenever it senses a problem. At first I was an occasional culprit by laying on the tubes and stopping the flow. The major culprit has been bubbles in the tube. I have yet to get a good nights sleep. Today a nurse tried rerouting the tubes . So far it has been a beepless morning. Praise God!!! I still have all my hair. The doctor said hair loss can come as late as 3 weeks from now. Velda will be cutting my hair very short soon to help the transition if needed. Looking forward to leaving tomorrow. Thank you.

Wednesday, June 12, 2013

And So It Starts

I am at the hospital, hooked up and receiving chemotherapy. I am receiving it with a PICC line. This is like an IV on steroids. It enters my arm just above my right elbow and snakes through my circulatory system until it stops  approximately 1 inch away from my heart. It took about an hour to install. This will be dripping constantly into my system for 24 hours over the next four days. I go everywhere with this wheeled contraption. Whoever devised this must have been a person familiar with Chinese water torture. Velda will be with me in general except at mealtimes. Fortunately she was not included in the meal plan. Today she had lunch at Martinelli's with friends. Ironically I had Italian as well (spaghetti). I am in room 419 and can receive visitors. If you want to call, please call Velda because we don't know what shape I will be in as this goes on. Caveat. One possible side effect is gastrointestinal fumes. Pray for Velda. We have had some entertainment. A crew had been washing the windows on all the floors from the ground.

Monday, June 10, 2013

Playing Hardball: Addendum

Velda just reminded me that a factor in changing to this plan was that the KU doctor said that other than the cancer that I was in excellent physical condition and that I should be able to handle this protocol. Thank God for Velda's TLC all these years.

Playing Hardball

No more Mister Niceguy. Velda and I went to KU Med concerning chemotherapy and a bone marrow transplant (BMT). We prayed that the doctors would have wisdom and be in agreement. Well they are in agreement. The chemotherapy is being taken to a higher level. This Wednesday I will be admitted to Salina Regional Health Center (SRHC)  for four days. They are going to be administering strong chemotherapy that is going to make me very sick. When I sufficiently recover, possibly 3 weeks, they are going to do it again at SRHC over a 4 day period. When I sufficiently recover from the second one I will go to Kansas City for the BMT. The BMT will be different than a typical BMT in that it will be preceded by yet another strong chemotherapy. This they say will cause my hair to fall out. (I just hope that I will look as good as George Stavropoulos) The BMT would have caused the hair to fall out anyway. It will now happen a few days earlier. The doctor at KU said that it was time to get aggressive and my Salina doctor wholly concurred. This is all quite overwhelming emotionally. After further reflection, it really sounds kind of normal for people who have cancer. I have seen many people with or without wigs in the treatment rooms in which I have been. They all have lost their hair. It grows back. I told Velda in the car that this could be like a first pregnancy. She had heard lots of stories of what it could be like but there was still a lot of uncertainty. The doctors painted a pretty grim picture for the next few months but the worst part is really the uncertainty. If I would have gone through something like this before, I would have an idea of what to expect, similar to a woman's second delivery. There are some things that are constant. We know that all things are working together for good because we love God and are called according to His purpose. (Romans 8:28) We are considering it all joy because of the incredible tool trials are in God's hands for developing our character. By the way, anything in the past that I may have considered a trial pales in comparison to this. God must be doing some major reconstruction on me. (James 1:2-4, Romans 5:3) We are also continuing to glory in my infirmity because it is a way for God's grace to be manifested in our lives and to perfect His strength in my weakness. (II Corinthians 12:7-11) One other constant is your prayers. Thank You.

Wednesday, June 5, 2013

I Want a New Drug

There are probably quite a few of you who remember the song title of this post from Huey Lewis and the News. I could be changing to my fourth chemo. I haven't even started the third one which was supposed to start in less than a week. I got a call today from KU Med saying that they had their regular staff meeting yesterday and not all the doctors agreed on the third protocol subscribed for me. It was decided that I will be getting a "stronger chemotherapy". Velda and I will have a consultation with the doctor in Kansas City on Monday. Pray for wisdom for the doctors and us as we are presented with the next protocol. Expect a post Monday evening. Thank you.

Friday, May 31, 2013

Chemotherapy: Part 3

We met with my doctor in Salina today. My new chemo starts next week. The protocol will be drastically different. The last types of were not much more than a shot in the arm and some pills. This one is taken intravenously over 90 minutes for two consecutive days for three weeks. Not to mention 4 other types of pills that I have been taking with previous rounds. The possible side effects are not much different than before so I should look about the same as I have through most of the other protocols (which has been pretty good). I am being switched while my numbers are close to the levels needed to do a bone marrow transplant. Let's pray that this protocol is effectively in a prompt way. On another note, we will be picking up Joshua this Sunday from school in the Republic of Texas and are pretty pumped about that!

Thursday, May 23, 2013

It's Not the Water

KU Med called me and said that I will not be doing a bone marrow transplant (BMT) this month because one of the latest test shows that recently the number myeloma cells in my marrow have increased. He said I have a "resistant myeloma". The kidneys were a clue and it would just be a matter of time before the other numbers rose as well. Velda and I praised the Lord loudly when we found out. I am switching to a new chemotherapy that he described as "new" and is used for resistant myeloma (my third type chemo in case you lost count). My lab tomorrow has been cancelled. I will have 2 rounds of this chemotherapy which will be done here in Salina. So where do we go from here? Continue to pray, glory and count it all joy. As for me, after I blog I will change the oil on the car, do what I can to help the crew build my fence and prepare to plant black-eyed peas tomorrow.

P.S. I still will keep the fluids going as well as the prune juice which has caused me to burden the water purification plant in Salina a little more than I have in the past.

Monday, May 20, 2013

All Good Except . . .

Velda and I are in Kansas City and just got our test results. Boy was that fast. The last time we had to wait a week. Velda and I prayed together this morning (as many of you did as well) that the doctors would pick the best day and that the numbers would look enough to proceed at this time. The verdict is inconclusive at the moment. All the indicators were good except the kidneys. Velda and I were dumbfounded because the kidneys had looked the best while everything else was playing catch-up. As recently as May 7 the kidney indicator was well within the range to proceed with a bone marrow transplant (BMT).Upon further investigation it became evident that I had not fulfilled my part of the bargain. I am supposed to keep myself hydrated to the tune of 3 quarts of water a day to keep the chemicals moving through me and to ease the load on my kidneys. I have a routine to help me but that routine has been broken for over a week and I probably have only been getting 1 quart a day. So I have to retest in Salina this Friday with strict orders to hydrate appropriately. Overall Velda and I were quite encouraged by the report and feel the kidneys should align themselves by this Friday. Thank you for praying. God is working.

All Good Except . . .

Velda and I are in Kansas City and just got our test results. Boy was that fast. The last time we had to wait a week. Velda and I prayed together this morning (as many of you did as well) that the doctors would pick the best day and that the numbers would look enough to proceed at this time. The verdict is inconclusive at the moment. All the indicators were good except the kidneys. Velda and I were dumbfounded because the kidneys had looked the best while everything else was playing catch-up. As recently as May 7 the kidney indicator was well within the range to proceed with a bone marrow transplant (BMT).Upon further investigation it became evident that I had not fulfilled my part of the bargain. I am supposed to keep myself hydrated to the tune of 3 quarts of water a day to keep the chemicals moving through me and to ease the load on my kidneys. I have a routine to help me but that routine has been broken for over a week and I probably have only been getting 1 quart a day. So I have to retest in Salina this Friday with strict orders to hydrate appropriately. Overall Velda and I were quite encouraged by the report and feel the kidneys should align themselves by this Friday. Thank you for praying. God is working.

Saturday, May 11, 2013

Here We Go Again

On May 7th I met with my oncologist/hematologist here in Salina and had some mixed reviews. The strength of my cancer has been reduced by 80%. The optimum level for a bone marrow transplant (BMT) is 100% or in other words, there is no evidence of the cancer. That level is not always achieved so there is a "tolerance level" that can be reached that will allow the BMT to be performed. On May 20 Velda and I will be travelling to Kansas City. I will go through the same battery of tests that I did in April to see if the cancer has been reduced enough to proceed. From my perspective, it would be great to proceed at that time because I would have the whole summer to rehabilitate and would have a strong chance of being ready the first day of school in August. Here is how to pray.

  • Wisdom for the doctors in determining the best time to do the BMT regardless of my schedule.
  • On May 20th I will be at the optimum level for a BMT.
We have received around $80,000! That is $10,000 over what we needed to perform the BMT. The original estimate of the BMT was based on smooth sailing, no glitches. Not getting the BMT in April was a small glitch. The two extra rounds of chemo since April and the second set of tests to come are costs not figured into the original estimate so we're digging into the extra $10,000 already. We believe that God will all of our need according to His riches in glory by Christ Jesus. (Philippians 4:19) We also acknowledge that part of God's formula for meeting our needs is living a godly life and being content with the necessities. (I Timothy 6:6-8) Another way God meets our need is by responding to appropriate requests. James 4:4b-5a says " . . . yet ye have not, because ye ask not. Ye ask, and receive not because ye ask amiss  . . ." So we are continuing to ask and would like you too as well. Here is what you can possibly say.

  • That God would bring in the exact amount that we need (He knows even though we don't)
Thank you for all the financial gifts and especially for praying.

Saturday, May 4, 2013

Tentative plans

I don't have any test results to report. The weekly labs have been scaled down to only record complete blood count (CBC). My hemoglobin has been drifting down which explains why my energy is waning. I received an email from KU Med asking if a bone marrow transplant (BMT) on June 19 would fit into my schedule. I told them that I would like to do a BMT on a day where the indicators show that I would get the most optimal results. As far as my schedule I said that school is over for me May 17 and that I would like the BMT as soon as possible afterwards so as to be ready for the start of school the second week of August. Please pray that the optimal date will coincide with a date the third week of May. Thank you.

Thursday, April 25, 2013

Running Over

$70,184.68! Jesus said in Luke 6:38 says ". . . pressed down, and shaken together, and running over . . ." with respect about how God can bless. We are experiencing it! It is time for a confession. I have been a hypocrite with regards to this fundraiser. I have put on a bold face but had a very dim hope of reaching the goal in my heart. The amount of the Benefit Dinner blew me away. Still I figured that I would not get much more (Oh me of little faith). In the 10 days since the benefit dinner there has been an average of around $2,000 a day being given to my need! If you go to the HelpHOPELive  (HHL) site the thermometer will show less than 100% because some money was given directly to and for us. At first I chafed a little thinking "Don't these people know the procedure", but you and God knew better. HHL will take 1-2 weeks to get the money to us after I apply and Christian Healthcare Ministries (CHM) takes 60-90 days. So having some money that can be accessed very quickly seems quite wise now. HHL has received $63,904.68. We have received $6,280. Please don't accuse me of a bait and switch con game but I am going to raise the goal. KU Med advised us to raise more than than the amount they quoted to us. Because of my level of faith at the time I set a goal that covers only the procedure. There will be other costs. The amount raised covers a routine procedure without a hitch. If for some reason a specialist is called in, it will raise the amount needed (specialists are not cheap). This also doesn't cover transportation, follow appointments in Salina and Kansas City, the work being done in Salina now with my weekly labs, some prescriptions, monthly doctor visits nor any unforeseen costs. For instance I am supplementing my treatment with an alternative protocol called CeMe. KU Med encouraged us to supplement what they were doing. This product was recommended to us by a trusted friend. It is being clinically tested in Atlanta and getting very good results. There is no information online because nothing will be made public until there is a significant body of data so as not to give anyone false hopes this early in the trials. If you call them they are quite willing to tell you what is happening thus far with a strict caveat that at this point they don't know what all it can do and there are no guarantees that it will work for you. It takes about 90 days to take full effect and its main function is to boost the immune system and supply energy. Those are my two main needs after the bone marrow transplant (BMT). We have decided to try a double dose for the first 90 days at their recommendation ($2,000/90 days) and then possibly change to a maintenance level after that ($1,000/90days). One person who had myeloma in the trials was declared "cured" after using this protocol. This is significant because right now the medical community considers myeloma as treatable but not curable. Anyway, now that the BMT is covered, I have no idea the amount to which I should reset as a goal. This is my first time on this (hopefully my last) so I am shooting in the dark. For now I will reset the thermometer to $75,000. If we pass that amount, I will reset it again. In Matthew 17:14-21 Jesus says ". . . If ye have faith as a grain of a mustard seed, ye shall say unto this mountain, Remove hence to yonder place: and it shall be remove . . ." It is comforting to know that the size of my faith is not the issue but the size of my God. Small faith in a great God brings great results. We are seeing mountains move!

Praise God for His work through all who have prayed and given.

Pray for (in order of importance):
Wisdom as we are continually faced with decisions that are pretty foreign to anything that we have faced in our live thus far

Complete healing

God to pick a perfect date for the BMT to be done (if needed)

Our patience as the perfect date is determined

God to make a perfect match with our resources raised and the future (unknown) needs

Thank you

Wednesday, April 17, 2013

The Benefits Continue

Over $60,000! I wonder if I will cease to be amazed. There has been over $9,000 received at the HopeHelpLive website in addition to more that has been given directly to us this week! (How many exclamation marks can I use!) Add that to over $50,000 received at the Benefit Dinner and it starting to become mind boggling! I had a lab this week but it was only one test. My hemoglobin is slowly drifting down which is not good but it is still in a range that allows me to function pretty close to normal. Thank you for praying and contributing.

Sunday, April 14, 2013

Thank You

$50,000! Wow! We are so very thankful to everyone who supported us today. That is an amazing amount and it humbles me to think of what that means. I shared with a few people today that when I was in my teens I would wonder what people would say about me when I died. I feel like I'm hearing those type of things way ahead of schedule. As far as the medical side, I have 2 more rounds of chemotherapy scheduled. The doctors are simply waiting for the numbers to get into to the correct range before performing a bone marrow transplant. When I was in Kansas City in late March the chemotherapy was stopped which caused my numbers to plateau. I expect them to go down again now that I have started again. Again many thanks to the support that was showed to me and an special thanks to the organizers and workers of the event. We are getting to see God in action through His people.

Tuesday, April 2, 2013

Hurry Up and Wait

I am not going to Kansas City this week and you can throw out the schedule from the last blog as well. Talk about an emotional roller coaster again. I was informed after school today that the numbers were  not good enough to do a bone marrow transplant (BMT) at this time. There were things to which that I was not looking forward (5 hours in a relatively motionless in a recliner  level 10 chemotherapy) but I had mentally prepared myself to do. It was a disappointment to not go. While walking to the Salina cancer clinic Velda let me know that there were quite a few benefits for having it postponed. Thank God for Velda. My oncologist explained that at the beginning of my chemotherapy the original drugs were not working and we switched mid-stream. He said he is not surprised because it was like starting a month later than my actual time of beginning chemotherapy. It has been decided that I will receive at least one more round of chemotherapy which will keep me here through early May. At that time another evaluation will be made of my progress and the BMT will be rescheduled. I should fulfill most if not all of my school responsibilities not to mention being able to see my daughter Grace's vocal concert. My emotions are still swirling around a bit as I write this blog but it is starting to settle into a fairly positive attitude. My oncologist also said that  there is a lot to be positive about my numbers and he's especially glad to see the numbers pertaining to my kidneys. He didn't get to specific but spoke in general terms. I will be updating you as I go back to the routine of weekly labs and chemotherapy (and prune juice for that matter). I am especially thankful for everyday that I open my eyes in the  morning and get out of bed. Thank you for praying.

Saturday, March 30, 2013

Back Home

It is good to be back home. We had a nice time getting around Kansas City. I am sure we won't make as many wrong turns next time. The Hope Lodge was full so we were put in the Drury Inn in Merriam KS which was very nice. Velda didn't have to cook while we were there because it provided a complimentary hot/cold breakfast as well as dinner each night. While In Kansas City we visited the Arabia museum on a recommendation of a friend and were amazed at all the pre-Civil War artifacts recovered from a sunken river boat. Anyway, I had some tests and x-rays along with quite a few orientation meetings regarding the bone marrow transplant (BMT). We have no results yet but were told if the cancer is at least in 50% remission then the BMT will be scheduled. My transplant coordinator has set up the following schedule. Some parts of this schedule are tentative.

April 4 - Consent meeting and neupogen* shot
April 5 - Neupogen shot
April 6 - Neupogen shot
April 7 - Neupogen shot
April 8 - Stem cell collection (7.5 million minimum needed, return to Salina when sufficient number is collected)
April 9 - Stem cell collection (if needed)
April 10 - Stem cell collection (if needed)
April 15 - Melphalan chemotherapy (on a scale of 1-10, 10 being the most potent chemotherapy, this is a 10)
April 16 - Melphalan chemotherapy
April 17 - BMT (my stem cells are put back in my body and they begin the process of rebuilding my bone marrow)
April 18 - Monitor my blood levels, check for infections and rehabilitate in Kansas City
May 6 to 15 - When my blood levels look good, I will return to Salina to continue rehabilitation with stringent restrictions on diet and activities
July 24 - If all goes well, all restrictions will be lifted as far as my diet and activities. (Two days before my birthday!)

We will give you specific details and prayer points as each event approaches but this gives you an overview of the days to come. Thank you for praying

*Neupogen is the hormone given to me that makes the body overproduce stem cells. The body will push the extra stem cells into the blood stream where they can be harvested.

Tuesday, March 26, 2013

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




Thursday, March 21, 2013

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!

Tuesday, March 12, 2013

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)

Friday, March 8, 2013

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".

Wednesday, March 6, 2013

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.

Wednesday, February 27, 2013

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.

Wednesday, February 20, 2013

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.

Tuesday, February 12, 2013

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.

Sunday, February 10, 2013

I have called.

In response to encouragements to call my doctor, I just called him. He said that since I haven't experienced anything since Monday, we will wait and see but to let him know if I have another episode.

Rough Week

I got up on Monday and started to prepare to go to school. While in the shower my nose started bleeding.  No big deal. Soon after I was hit by a wave of dizziness and shortness of breath. I dropped to me knees to keep from falling. When it passed over I assumed it was just a one-time episode and proceeded to continue getting ready for school. While drying myself after the shower I had a second episode and dropped to my knees again. When it subsided I pressed on to get to school. While getting dressed I experienced a third episode and decided not to go to school. There were no more episodes and I felt fairly normal by midday. While yawning and stretching that morning, I felt a rib on my left side pop out and back in. This left me with a sore left side that felt like a muscle pull. As the week progressed, a couple of places on the middle of my chest felt like pulled muscles as well. By the end of the week a spot on the right side of my rib cage felt like it had a pulled muscle a well. To go along with all this was a feeling of "creakiness" in my hips and lower back. It was just a soreness similar to the day after a workout. None of these were debilitating but were multiple sources of irritation. This was the week of Parent/Teacher conferences. Therefore I, thankfully, was relatively inactive Thursday and Friday. I will say that sometime late this week one of my daughters asked me why I was walking differently. I'm blogging while my family is at church. I don't miss church very often but a restful and  uneventful morning was quite appealing. I was still able to talk to God this morning and hope to meet with my brothers and sisters in Christ next week.

Sunday, February 3, 2013

What's Up Doc?

This week I met with my nephrologist (kidney doctor). I had not met with him since Thanksgiving. He also was pleased with my latest numbers. He spoke of a procedure that has been successful in returning kidneys to normal function if they fail to by themselves. I found that comforting to know. He also said because of the rarity of myeloma, there is not a large body of data to refer to when treating it. Information is constantly being added from the various cases. Daily I continue to feel fairly normal. My doctor doesn't even ask how I'm doing anymore. God was able to get me through our musical Annie without missing a beat. The students didn't miss a beat either and put on a great performance.

Spiritual. When this all started my daily readings were in the book of Kings. One of the main points of this section of scripture is that God rewards obedience and punishes disobedience. I spent a few times confessing to God things that came to mind. My theme verse was "Search me, O God, and know my heart: try me, and know my thoughts: And see if there be any wicked way in me, and lead me in the way everlasting." (Psalm 139:23-24) Now my daily readings are in the book of Job. (God's timing is really interesting). Now I am reading Job with much more depth and insight. I am nowhere near Job's situation but can relate a little bit. Also it gave me balance from Kings in that not all circumstances can be traced to our level of obedience with God. Since before the myeloma I have been attempting to memorize John 14-17 so that I can quote it in one sitting. This has been a great theme to have flowing through my mind and spirit. John 14:1 has been especially relevant. "Let not your heart he troubled: ye believe in God, believe also in me." Verse 27 of the same chapter is similar. "Peace I leave with you, my peace I give unto you: not as the  world giveth, give I unto you. Let not your  heart be troubled, neither let it be afraid." God has given me the method (faith) and the tool (peace) needed to keep my heart untroubled and unafraid. Thanks be to God that this is what I have been experiencing. Please pray for wisdom as we are continually faced with both small and monumental decisions. Thank you.

Sunday, January 20, 2013

My First Side Effect

On Monday I started new chemotherapy which my doctor preferred. It required me to take aspirin as well. The aspirin serves as a blood thinner as a preventive for blood clotting. On Wednesday morning as I looked in the mirror to prepare for school I noticed that I had more forehead than usual. As I was leaving for school, my fedora sat about an inch higher on my head than I was accustomed to and felt quite tight. I asked my family members and they did not see a difference and no one noticed at school buy by the time I got home it was quite noticeable. My daughter Michaela thought that I had lost hair. The hat had given me an incredible hat ring. My forehead gave me a look that made me feel like putting a couple of bolts on either side of my neck (think about it). I felt as fine as any other day but my family encouraged me to stop the pills until after I consulted with the doctor. He said to go to the emergency room if it worsened but otherwise to come in the next morning to be checked. It didn't get worse and by next morning the swelling had sunk to my eyebrows. Thursday was a day that I was noticed the most by others. "Did Velda smack you in the face?" is an example of a few comments that I received. Friday the swelling had sunk to my eyes which did seem to be noticed as much. When I was checked Thursday morning I brought the aspirin with me. The nurse read the container meticulously and discovered that there was a warning that it could cause facial swelling. Who reads the  warning labels on aspirin! So it looks like aspirin is out. Their guess is that it was retention of wate. I am to resume the chemo pills on Monday with a prescription blood thinner.  I still am feeling great and continue to lead a life pretty close to normal for me. I would like to reiterate from the last blog that the numbers seem to have turned a corner in the right direction. Now they need to plummet precipitously (i.e. decrease very rapidly). Thank you for praying.

P.S. I am sorry I didn't take pictures (but not very sorry).