July 29, 2014.. We made the drive to Little Rock yesterday. We left at 8am after getting up at 5:15am to get started. It just takes us a long time to get ready to leave. We had an uneventful drive here. The weather was good and the traffic was not real bad.

Since my last posting: I had to spend two days in the hospital due to a high fever. They did not find the exact cause of the high fever (up to 104.9). They gave me several rounds of different antibiotics and the fever went away. 

I have been getting the infusions of Kyprolis twice a week since my last visit to Little Rock. I will learn this week if it is helping with the Myeloma and I pray it is.  

We are now getting ready to leave for the hospital. My first scheduled test today is at 11:50am and a PET scan is this afternoon. I have not been allowed to eat anything since last night due to having the PET scan this afternoon. I am sure I will be really ready to eat when I am finally free but that won't be until about 6pm when I am finally finished testing for today. I will have to skip eating tomorrow too since I have the bone marrow biopsy and that is same day surgery (I will be sedated for the procedure).
  
The following was updated later in the day: I got the PET scan today. They injected the radioactive glucose and I waited one hour then they took me to the PET scanner and the scan took about 45 minutes. I also had a echo-cardiogram with contrast injected. That test took longer than I expected...about an hour. I will probably hear the results of these tests when I see the doctor Thursday. I went to get the Kyprolis infusion at 4:30. They had me scheduled to receive it but they did not have a doctor's orders to give it to me. We waited to get the order until 6pm and it never came so I was not able to get the infusion today. I will go back tomorrow and Thursday and get the two infusions. I sure wish I could have gotten it today as scheduled. They have strict rules that a doctor has to make the order for chemo. A nurse or nurse practitioner can not enter the order. I talked to the clinic manager and he said he would find out where the failure occurred in getting the doctor's orders entered for my infusion. 

My white count was 1.45, red count 3.09, hemoglobin 10.1. 

May 23,2014.. We arrived home at 12:40am on Friday, May 23. We left Little Rock to head home at 12:46pm. Our drive from Little Rock was uneventful except for a couple of delays due to road construction. We had no rain on the trip either going or coming back. It was a really long day since we got up at 5am in order to get packed up and to the hospital before 8am. 

I checked with the local oncologist and it looks like I will start treatment of the Kryprolis next Thursday. It will be by IV. I have been told it will take up to 4 hours to get the treatment each time. I will be getting it twice a week. The treatment is given on two consecutive days each week. I will be receiving three sets of treatments each month and then skip the fourth week. 

I pray this treatment works and works for a long time. My options are becoming more limited.   

We checked out of the hotel and Jerry got blood drawn again this morning at 8am. We then proceeded to the MIRT doctor's waiting room for our 10:00 appt. The couple we happened to be seated by asked where we were from...Jerry said northeast TN and asked if they were familiar with the Bristol area. Their response was unbelievable...the wife said she was very familiar with the area and that her great grandfather had lived in Surgoinsville and was a Caldwell. She now lives in Batesville, Arkansas. Jerry said he is a Caldwell and that we actually live in Surgoinsville which has since been incorporated into Church Hill. The chance of this happening is almost unbelievable given the fact that over 10,000 myeloma patients pass through these doors yearly. She has done extensive geneology research on her ancestry and decided they had to be somehow related. We didn't have much time to talk but managed to exchange phone nos. to keep in touch and find out additional information. By the way, her husband was also seeing the doctor for a myeloma appointment.

We are now on I-40 headed home at last. We left Little Rock at 1:45 Eastern time, which is late in the day for our 12-hr drive home. The doctor spent quite a long time with us explaining Jerry's current situation. Based on lab results, he said the Mekinist had not made much difference which was very disappointing to us. He explained that his bone marrow was pretty much "beaten up" so his recommended path forward for now would not be a stem cell transplant because of the heavy doses of chemo required in preparation for the transplant. Also, that the drugs normally used to treat myeloma would not work due to the rarer type of myeloma Jerry has. Instead of the Mekinist, he is to begin taking Krypolis via infusion 2 days each week along with the steroid, Dexamethazone. The Dex will be in pill form and always taken on infusion days. Dr. Jethava said he was very hopeful that this change in treatment would be more successful. We also are hoping and praying for good results.

Next appointment is two months from now with orders for a PET scan, sedation bone marrow biopsy, and blood work which is always a given.

As I write this, we are in a delay on I-40 caused by road construction that has already lasted 30 minutes.

May 21, 2014.. We didn't do anything special today. We plan to get things ready to check out of our hotel room early tomorrow to get to the blood draw appointment at 8am. We plan to leave for home after we finish with the doctor appointment. I don't expect to be finished at MIRT until about noon. I don't think I have ever left for a 12 hour drive at noon before. I know I will get really tired before we get home. We need to be there before Friday due to a commitment Reta has for all day Friday. I hope our appointment does not get delayed for some reason. We just can't tell how long things are going to take when we are here. 

We did not stay at the apartments where we have stayed and like so much. We thought we were only going to be here a max of two nights so we didn't try to get one of those apartments. We are staying at Guest House Inn near the hospital.

We will try to make a posting tomorrow while on the road giving an update as to what we found out from the doctor.  

May 20, 2014.. Today, I did not find out the information I thought I would. I had the tests done early in the day and then went to the doctor appointment. He had not received the results of the myeloma tests that were collected this morning. (They drew a total of 14 vials of blood for the lab tests.) Therefore, he was not able to determine if the Mekinist was making a difference in the myeloma so he had to reschedule another appointment at a later time. I wish they had scheduled me for the lab tests a couple of days earlier so he would have had the results. I am now scheduled for blood work again early Thursday morning (I am wondering what can change in my blood in two days) and then see the doctor for him to determine the new path forward. He explained several options with one of them being a stem cell transplant. He seemed to doubt the Mekinist would make a significant difference unless it was combined with some other drug. 

May 19, 2014.. We drove to Little Rock today. We left about 7:20am and arrived here at 8:15 EDST. We stopped for a short but nice visit with my brother who lives in Memphis. The drive was uneventful and the traffic was not as heavy as it normally is on the way here. We didn't even have to stop for any road construction or accidents. 

I have only the myeloma blood work tests and an EKG to be run tomorrow and then see the doctor at 1:30. We are both getting nervous about the doctor appointment when we will find out if the new drug I am on is helping fight the myeloma.  

I will try to update this blog tomorrow night to let everyone know what the doctor said. 

Thank you for caring enough to read this blog. 

April 16, 2014.. We were originally scheduled to return to UAMS in Little Rock last Thursday (April 10) but they allowed me to get the testing I needed done locally. The testing was to confirm my heart was in good enough condition to take the drug Mekinist. I finally got confirmation from UAMS to start taking the drug and started on April 15th. As I mentioned before, the drug is very expensive at at cost of over $9,200 per month.