November 21, 2014.. Today was uneventful. We moved from our hotel room at Guest House Inn to the Home Away From Home apartment. It is in a nice location in sort of a country setting. The apartment complex is gated and a pass code is required to get through the gate. Our apartment is very nice. It is the nicest and largest we have ever had here. We feel very fortunate to get it even if it is for only a short time. 
I just got notice that my test results were available online for my bone marrow biopsy. There are so medical terms in it, I can't understand most of what is in the report but the best I can tell, the myeloma is better than it has been. It appears the percent plasma that was 15 percent at one time to 5 percent now. The M spike was over 5 at one time and is now 2.5. The desired result on both of these is zero. The Kyprolis seems to be working. I will know more about my whole situation when I talk to the doctor on Monday. 
We have to be at UAMS in the morning at 6:30 for a PET scan. We plan to get up at 4 in order to get ready, drive there and find the right place in the hospital. I will be injected with the radioactive glucose and then wait for about 45 minutes before the PET scan. I can't have anything to eat or drink after midnight other than water. I am so glad I can have water. That is the only test I have tomorrow so we should have plenty of resting time. 
Today was drizzling rain all day with more rain forecast for tomorrow. 

November 20, 2014.. Today was a hard and long day. We started the day at the hospital at 7am and were able to leave at 4:30. By the time we were able to leave, I was feeling pretty bad. It seemed the bone marrow procedure did not go as well as in the past. I had to wait several hours after I got to the area where they do it before they finally started to actually work on me and then things were just not as smooth as in the past. Just to complain a bit... I had not had any food or liquid of any kind since about 10pm last night and I asked for a drink of water and the person working with me told me she would get it soon but never did get it. When I finally got to the car, I drank about a quart of water. As soon as I got to the hotel, I laid down and I feel somewhat better now. 
One of the bad side effects of the drug I am getting (Kyprolis) to treat the myeloma is congestive heart failure. One of the tests that were run today was ProBNP. I am told this test measures if a person is having congestive heart failure. My test results in the past have always been well within limits but today it was considerably out of limits. My previous results had run in the 70's or so and today it was 369.  The top limit is 125.That brings all kinds of questions to my mind about what the doctor will say about that and what Kyprolis is doing to my body.
This morning when I was getting my blood drawn, I asked if they were collecting a ProBNP sample. She said no because it was not on the list to collect. When I met with the Physician's Assistant later in the day, he said I needed to get that test and sent me again to get another draw. They had to stick me 3 more times to get that one sample. 
Tomorrow, we move from the hotel where we are staying to an apartment for the remainder of our stay. It will be much more comfortable there and not cost as much. Tomorrow, I have no tests scheduled.     

November 19, 2014.. We have once again arrived in Little Rock. We left home this morning a little before 8am when the temperature was 10 degrees. We had a good drive to Little Rock with the sun shining most of the way. The traffic was heavy as usual but not as bad as on some trips we have made here before. We stopped in Memphis at Burger King just a short distance from the Interstate and met my brother Lester who lives in Memphis. We spent about 1.5 hours with him in a nice visit and then continued on to Little Rock. We drove the last 2 hours or so in the dark and we arrived at the hotel about 8:45 local time. Tomorrow will be a really busy day with my first appointment at 7am with other appointments following until the bone marrow procurement at 1pm. I have the preparation for that at 11:30am. The bone marrow procurement procedure will be the last thing for the day. I will not be able to have anything to eat or drink after midnight tonight in preparation for the bone marrow procedure. 

August 1, 2014.. We left Little Rock at 8am and arrived home at 9:30pm (on Friday). I was too tired to post a note here last night. The traffic was much heavier coming home than it was going to Little Rock. There was an accident west of Knoxville and had traffic stopped and that delayed us over an hour. 
This will be all for now. Thanks for caring enough to read this. ... Jerry 

July 31, 2014.. We went to the 12 noon doctor appointment and finally got to see him at 1:20. He thought the Kyprolis is working! That was great news. He said some of the important parameters had improved and expected them to improve even more as I receive more treatments. Before these tests were done, I had received a total of 10 infusions of Kyprolis. I received two more here but that was after the tests had been done. He also added Thalidomide to my treatment each day. I will take that daily throughout the month. I think there will be a short break at the end of each 28 day cycle, but I am not sure how long the break is. That is another expensive cancer medication. It is about $7200 per month. Hopefully that will add an extra push that will reduce the Myeloma even more. 
Yesterday I saw a lady from Bristol I have seen here twice before but I did not talk with her. There is also a couple here now that I had met at the KHO at Allendale. They are from Kingsport.  I called them today and they see the doctor tomorrow and will leave for Kingsport later in the day and drive at least part of the way. I am not the only one from our area driving all the way to Little Rock for treatment.
I have taken Lorazepam the past two nights to help offset the effects of the Dexamethasone. I have been sleeping very poorly after taking the Dex. So far, it has helped greatly.  
I am scheduled to return here for testing again in November. 
Thank you for your continued prayers for they are working. 
So tomorrow, we head home! Yippee!! 

July 30, 2014.. The Dexamethasone I take, before I get the Kyprolis , keeps me awake, sometimes for long periods of time. A friend from our Myeloma support group back home gave me a tip about taking Lorazapam before going to bed on the nights I have had Dexamethasone. I tried that last night and it helped greatly. I slept during the night! I hope I have found something what will help me sleep during those few days each week. I will try it again tonight. 

Today we are preparing to go to the Physician's Assistant appointment and then on to the bone marrow biopsy. I could not eat or drink after midnight last night so I am going to be very dry and hungry by the time I get out of the afternoon appointment. I am already missing being able to drink water. I figure I won't be finished with the procedure until after 3pm. I have another appointment at 4:30pm for the first of two Kyrpolis infusions. That will take until about 6pm if all goes well.  

Update tonight at 10:00pm:
I got the bone marrow biopsy. It went smoothly and I didn't have the pain I normally have since they did this one while I was sedated. They also took enough sample to do a gene array. I also got my Kyrpolis infusion. I was there from 4:30 until a bit after 7pm. I will go back for another infusion tomorrow at 4:30. My doctor appointment is at noon. 

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.