December 4, 2016.. We left Little Rock on Friday, December 2 at 10:50 am (CST) and arrived home at 11:30 (EST). We had an uneventful drive back home but had a couple of traffic delays along the way. The delays were not for a long duration. Hopefully I can start the new treatment this coming week. 

December 1, 2016.. We were at MIRT this afternoon for about 4 hours. Just about everyone was gone by the time we got out. I was correct in my thinking that my condition has changed a lot in a short time. Due to that, my treatment will also change completely. I will be going on a new antibody drug called Darzalex along with Pomalyst and Dexamethason. I have two myeloma friends back home that are on Darzalex and they are doing very well on it. Both are in remission now. I have never been in remission. I hope it works as well for me too. 
The PET and MRI scans showed two small new lesions. The old lesions were gone because of the Kyprolis when it was working. I go on Darzalex next week (hopefully). It is much more complicated getting it than it was Kyprolis. The first treatment is a pretty big deal since some people have reactions to it. It takes 8 hours for the first treatment as they start and stop the treatment to make sure all is ok. From the first treatment, I get them once a week for 8 weeks then I have to return to MIRT for a round of testing to see if it is working. If is working, I continue on but go for treatment every other week. I eventually work up to going just once a month for the infusion of Darzalex. I am so hopeful that it will work for me. It does not work for everybody, about 61% is what I have read. 
On our trip out west recently, I was squatted down and photographing a cactus, and lost my balance and fell backwards. I had really bad pain for a couple of days and thought I was going to have to immediately return home. It felt better after a couple of days but I feared I had broken a rib. The scans I had here did show that I had a broken rib in my upper rib cage.
That about sums up what I have learned today. I am going to cut this shorter than it could be in order to get it sent out earlier. Thank you so much for caring enough to follow this blog and thank you for your support. Thank you for your continued prayers. We appreciate it more than I can say.   

November 30, 2016.. I finished up with all the tests I was scheduled to have today. We were there just about all day starting at 8 am this morning. I am seeing more things as my test results come in tonight (I can look at them when they are posted to my account at UAMS) to show me the Kyprolis is not working like it was. I just don't know how bad it is at this point. I do expect the doctor to change my treatment regime significantly tomorrow. I would feel so much better if I were seeing my regular doctor here instead of his replacement. By the way, the doctor that is seeing his patients has many years treating myeloma patients so it should be ok to make decisions about me. There are two people from back home I see at KHO and he is their doctor here.

It is so sad to see the destruction at Gatlinburg and surrounding area. It all seems impossible. They are collecting for the Red Cross here in Little Rock to help people in that area. I guess they are doing that all over the country. So very sad.  

November 29, 2016.. I forgot to add to the post last night I had to get a unit of blood. My hemoglobin was too low (8.0). That increased the time we were in infusion so were there for over 6 hours. 
We are sad about hearing about the damage from fire in Gatlinburg and Pigeon Forge. We can see live updates on WBIR and WATE tv in Knoxville. 
I have a PET scan this morning, treatment after that and then an MRI at 4pm. I will update the blog tonight with any information of today.

I got the tests completed I was scheduled for today and we got back to the apartment just a little after dark. Seems like these days at MIRT get real long at times. We got there at 8:45 this morning and have to be there at 8 in the morning. I have the bone marrow biopsy starting then and should finish with all the tests about 5 pm or later tomorrow with an echocardiogram at the end. We are then scheduled to see the doctor on Thursday at 1 pm. 
I think I mentioned my regular doctor will not be here. Another doctor will be seeing his patients while he is gone. I hope I get a future treatment plan from his replacement that I think is the best plan I can be on. I might have to try to make some arrangements to see my doctor when he gets back. That would require us to spend an additional 6 or 7 days here in order to do that. The earliest I could see him would be next Wednesday. Hopefully the doctor replacing him, will give me a treatment plan that I think is adequate. 

November 28, 2016.. I got checked in at MIRT this morning and picked up all my paper work and got my labs drawn and they were sent to the lab. Today, I got my first of two treatments that I will get while I am here this time. When I reviewed my lab tests results tonight, I was disappointed and surprised at the results of the Kappa Free Light Chains in the myeloma markers on the blood test. This is one of the main tests that are looked at to see if treatment is working. Without trying to explain, I will post a screen shot of some of the test results. As you can see, the Kappa Free Light Chains almost tripled during this past month and up almost 8 times since just a few months ago. (Click on the image to enlarge it enough to read)

Another real important part of the test is the Kappa/Lamda ratio. It shows here that it has gone to over 89. This is the highest I have ever had since they have been testing me. It is surprising how fast it went up. I had heard from others that it just takes off in the wrong direction when a treatment stops working. I have told some in my family that my regular specialist will not be here to see me while I am here at MIRT. He will be attending the American Society of Hematology meeting in San Diego so I will have to see another doctor. I wish my doctor was going to be here.  

November 27, 2016.. We made the drive to Little Rock on Saturday November 26. We left home at 7:30am EST and arrived at the Fifth Avenue Lofts apartments where the Little Rock Church has apartments for rent to myeloma patients at about 6:30 pm CST. Traffic on the way here was not particularly heavy as we thought it might be due the Thanksgiving holiday. The big difference was lighter than usual truck traffic. That made driving much easier. Tomorrow, I have a light schedule at UAMS/MIRT so it should be an easy day. 

July 15, 2016.. We made the drive back home with no problems. The traffic was heavier than it had been on the way to UAMS but we did not have any delays due to the traffic until we got to Knoxville and then the delay was not significant. We left Little Rock at 7:30am CDT and arrived home at 8:30pm EDT. Thank you all for caring enough to follow along with us on this journey and thank you for your comments.  

July 14, 2016..  As I write this, there are tornado warning sirens going off just like they were when we were here in March and a bad storm is occurring. This must happen often here.. 
We got good news again today. The doctor said that by all the test results, he is ruling I am stable. He said since he increased the Kyprolis dosage, my numbers have improved a bit. We are very, very thankful to get this news. I asked about the CD numbers on the H/S studies that I posted the other night. The APN said that the changes were due to treatment and there is no need for me to be concerned about it. That eased my mind quite a bit. I stay on the same treatment plan as I have been on. I asked about going to another treatment like Ninlaro (just approved by FDA in November last year) and he said it was not as potent as Kyprolis and I should stay on Kyprolis. I explained how much we wanted to take a long road trip. He said I could do that if I could work out treatments while gone and it would also be ok to infrequently add an additional off-week to my regular off-week. I think that would be a great help in scheduling a cruise if we decide to that early next year. 
I am scheduled to return for the same testing in November. His APN told me they would have put me on a 5 or 6 month return if there had not been an elevated pressure showing in some part of my heart (I think it was higher pressure in the pulmonary artery). This is most likely caused by the Kyprolis treatment. They will be keeping an eye on this in the future. 
As I said, we are very happy with the news we got today. I feel as if we have received a big blessing, and I hope you feel that way too. Thank you all who have read, followed, cared and prayed for us as we have been on this trip. 
Sorry for the later than planned posting. The storm caused an Internet outage.    

July 13, 2016.. I finished all my tests today and I sure am glad. I had the PET and CT scans early today, and had one MRI this afternoon. The PET/CT scanner is new and it did not take but 18 minutes for the scan once I was in it. The old scanner took much longer. The wait until I can get in and have the tests done can be quite long. We have to get accustomed to sitting in waiting rooms. 
I failed to mention in yesterday's post that I got a complete Echo-cardiogram yesterday. I think I mentioned at some time the test is to make sure the Kyprolis is not damaging my heart. I was impressed with the thoroughness of the test.  

I thought I would include a photo of the waiting room for the infusion area. This shows the area is almost empty of people but it normally is not that way. In the back of the photo is the check in desk, and to the side of that is one of the doors that goes into the big infusion area. They also do stem cell transplants there too. This is where I go to get my treatments at MIRT (Myeloma Institute for Research and Therapy). Since 2012, we have spent much time sitting and waiting until my name is called to go to the infusion area. You should be able to click this image to make it larger if you prefer and your escape key will make it small again. 

We see the doctor tomorrow and hear what he has to say. We plan to head home on Friday morning if the doctor does not make us change our plans. 

Note to Self: Stopped Xeralto and aspirin 4 nights before bone marrow biopsy. The biopsy was on the 5th day after stopping Xeralto. Started Lovenox injections the next night after stopping Xeralto. Took one injection in the morning and one at night. Did not take Lovenox injection the evening before the biopsy. Took Lovenox the night of the biopsy then the next night restarted my regular schedule of Xeralto and aspirin. 

   

July 12, 2016.. I made it through the tests and treatment just fine today. That finished my treatments that I will receive here. If I didn't mention it before, the treatment is exactly the same as I receive at KHO at Allendale in Kingsport when I am there. 
I have been tempted to work out arrangements in Jackson Hole, WY to get treatments there and travel there during the week I don't have treatments (this gives me 13 days with no treatment) and get three weeks of treatment in Jackson then return home on my next 13 days off. This would give us plenty of time to spend in Yellowstone and The Tetons National Parks with time to see more of the area and perhaps go to Idaho Falls. We both yearn to spend time in the west. This has only been an idea so far with no real plan to carry it out. The reluctance to go is mainly due to fear of getting sick or having problems getting treatment where it seemed to all be arranged before we left home. I still have not ruled it out and I guess I will have a firmer opinion after I see the doctor Thursday. There is always a possibility the doctor could put me on some other type of treatment.  
I am getting more and more antsy about what the doctor will say as the time gets closer to see him Thursday. When looking at my myeloma marker tests last night, I saw some things that caused me concern but I have no idea if what I saw is very important. I won't know if this is very important or not until I talk to the doctor. These numbers have gotten worse than they were at last testing. Here is what I am referring to. They do such in-depth testing, it takes a lot of time to go over just the parts I can see online.  

Component            Your Value   Standard Range
CD3 Mature T Cell        82 %              64-82 %
CD4 Helper T Cell        14 %              39-57 %
CD8 Suppresor T Cell   68 %              17-31 %
CD19 Pan B Cell        0 %                    8-16 %
CD56 N/K Cell             18 %                7-21 %
H/S Ratio                       0.21               1.00-3.60
Absolute CD3             266 /uL            171-2005 /uL
Absolute CD4             46 /uL              720-1348 /uL
Absolute CD8            220 /uL              318-710 /uL
Absolute CD19       0 /uL                   151-343 /uL
Absolute CD56            57 /uL             145-453 /uL

Previous tests:

Name Standard Range	6/19/12	5/20/14	3/24/15	11/9/15	3/14/16	7/11/16
Absolute CD19 151-343 /uL		3	0	0	0	0
Absolute CD3 1171-2005 /uL		470	584	792	635	266
Absolute CD4 720-1348 /uL		186	200	199	221	46
Absolute CD56 145-453 /uL	70	59	108	98	60	57
Absolute CD8 318-710 /uL	209	277	393	591	415	220
CD19 Pan B Cell 8-16 %	6	1	0	0	0	0
CD3 Mature T Cell 64-82 %		88	84	89	91	82
CD4 Helper T Cell 39-57 %		35	29	22	32	14
CD56 N/K Cell 7-21 %	12	11	16	11	9	18
CD8 Suppresor T Cell 17-31 %	35	52	56	66	59	68
H/S Ratio 1.00-3.60	1.31	0.67	0.52	0.33	0.54	0.21

Tomorrow, I will have the PET scan and one MRI (most of the time, I get two MRI's when here) and that will finish up the testing for this trip. Please don't forget to include us in your prayers.....thank you. 

July 11, 2016.. I got treatment today starting at 11am and was in the infusion area for about 4 hours for the treatment. The treatment does not take that long but when there are frequent delays, it really adds up. Sometimes at home, I am there for 6 hours for one treatment. In case I did not mention it, I get 6 treatments per month. The attending nurse had trouble getting blood samples (enough to fill 14 tubes). She first stuck my right arm and said she could not get blood there then she stuck the left arm...she could not get blood there either. She called on another nurse to help her and she got it at another location on the first attempt. I still have not gotten to where I like to get stuck and was hoping they would take it from my port. They could not get all the tubes from the port due to heparin used to flush the port contaminating and affecting two of the samples so that meant I had to be stuck. 
The APN went through lots of questions about meds, pains, etc. They cover lots of things like listening to my lungs and doing some poking and feeling. I felt like I had gotten a pretty good exam when I was finished. She did request an added test for my blood samples for vitamin D. I felt sure my vitamin D level was ok since I take 5,000 units per day on my own and I am out in the sun some. It was not ok on my level and she called me in a prescription for 50,000 units taken once a week. She felt it was important that I get my level up to normal. 
Everything else the rest of afternoon went pretty uneventful.  
I didn't mention last night we were so blessed to get an apartment again this time from Home Away from Home ministries. It is a single bedroom apartment and close to MIRT. We have stayed in this complex (Fifth Avenue Lofts) before but not in this apartment.
Tomorrow at 8am, I am scheduled for my bone marrow biopsy. It will be a sedated one so I am not dreading it like I did the ones I used to have that were not sedated. Boy! Did they hurt! After that is done, I will have treatment again and after that, I will get an Echo-cardiogram. That is to check to see if the Kyprolis I am getting in treatment is causing any heart damage. Which is one of the side effects. 
That pretty much sums it up for this Monday.  

July 10, 2016.. We made it just fine to Little Rock. We left home at 7:15am EDT and arrived in Little Rock at 8:00pm CDT. We stopped and spent about an hour or so with my brother in Memphis. The traffic in route was very good compared to most times we make this journey. We have made the drive a couple of times before on Sunday and the traffic was light then. I am convinced that Sunday is the best day of the week to make this drive. We came through two periods of rain but they didn't last long. Overall, it was a good driving day. 
Tomorrow, I have a real easy schedule at MIRT. I hope to finish the day there by early afternoon. That will not be the case on Tuesday and Wednesday though. Thanks for taking the time and caring enough to read this blog. 

March 17, 2016.. We left Little Rock for the return home at 8:15am. We got out of bed at 5:30am but by the time we packed the car and cleaned the apartment, it was 8:15am before we could leave. The drive home was uneventful until we got just past Crossville and we came upon backed up traffic where a wreck had just happened. We sat in the traffic jam for 1 hour before the wreck was cleared. We finally arrived home at 11pm. We were really tired by the time we got here. We are very thankful for a safe trip to and from Little Rock. We will be returning in July for my 4 month check up. Thank you for following along with us. 

March 16, 2016.. We got good news today! I am still stable with the multiple myeloma. The doctor said my treatment has leveled off as far as driving the myeloma numbers lower so he is increasing my dosage treatment. He said there should not be any additional side effects with the increased dosage. He will be increasing it by about 25%. He thinks that will drive my myeloma markers even lower and quicker. He said my myeloma is not worse and in some respects is better but he just wants to drive the myeloma lower. There were no additional changes to my treatment. 
We will have to return for testing again in July. 
Every day since the bad weather Sunday has been beautiful. I am sorry I have not had time to send some photos along of some of the beautiful blooms, but we just have not had time. It will soon look like this at home. 
Tomorrow we will head back home just as early as we can get started. I will post about our drive home sometime after we get there.
We are very, very thankful for the good report today and thank each of you for your prayers and support. It sure does help greatly. I sure am glad I have you in my corner. We truly have been blessed.  

March 15, 2016.. I had a round of tests today and my second treatment of Kyprolis and Dexamethasone. I got the Dexamethasone late in the day yesterday so I didn't get to sleep much last night. We arrived at MIRT at 7:45am today to get the preliminary things done for the bone marrow procurement. When we finished with that, we went on to get the two MRIs before going to the treatment area. When I got the first MRI, which took about 35 minutes, I went out of that room and went to another room that had a scanner in it and was in that scanner for 45 minutes. There are several scanners in that area but I don't know how many. Needless to say, I was getting really tired of being inside those scanners by the time I finished. 
The bone marrow procurement went very smoothly. Mattie was my nurse. She is a really sweet nurse we got to know back in 2013 when we were here for over 3.5 months. She is originally from England and has a very pleasant personality and accent. It was like being with an old friend that was looking after me. Before and during the bone marrow procedure, there were several people (4 including one doctor) involved other that Mattie.  
When we went to the MRI check-in desk, which is in another part of the cancer institute, the nice black lady behind the counter jumped up and gave me a big hug. I only know her from checking in there. Actually, I got a hug the last time I checked in back in November. I tell you this place is really special in many ways but mainly for the people that work here. It was good to see another person we made friends with where we get the infusion treatment. We met her also in 2013. I posted her photo in a past posting in this blog so you might recall that. She is the one that baked me a sugar- free apple pie when she had so many other things to do on that Thanksgiving. I sure did appreciate it so much too. It was beyond being thoughtful. Of course we got lots of hugs from her today.  
I could write more but I had better stop tonight. The only thing I have scheduled tomorrow is the doctor visit at 1pm. That is the big one that we have been waiting for. I will have to have to say the closer it gets, the more anxious I get about it. I have no reason to feel that way, but I guess that is just natural. 
A real big thank you to the ones that care enough to read this blog. I sure do appreciate your doing that and a special thank you to Kathy and Steve who left the wonderful and caring reply at the first part of this blog.     

March 14, 2016.. Today was a busy and hectic day for us. We arrived at MIRT at 8:45am and finished and left at 5:15pm. I hope tomorrow will not be so hectic. I am getting treatments of Kyprolis while I am here too since I am mid way in my monthly treatment cycle. Getting the treatment adds at least 3 hours to the day at MIRT. I am scheduled at 8am tomorrow to start the bone marrow biopsy procurement followed by two MRIs. I will get the Kyprolis treatment again tomorrow. 
We made it through the tornadoes warnings yesterday without any problems. After the storms passed through, it was calm and we had a beautiful day today. The sun was out and many trees are in full spring bloom. It sure is beautiful in many places here. It is nice, I think, to visit a place that is either behind or ahead of the season at home. I would like to take a few photos of the trees to share with you but I didn't being a camera other than my phone camera. 

March 12 & 13, 2016.. I am sorry I am late in getting the update out for yesterday (March 12th). I were delayed in getting our internet access for this apartment today due to not having the network password. 
We left home on Saturday headed to Little Rock at 7:20am which was a little earlier than we normally are able to leave by about 40 minutes. We thought we were doing well with the early departure. We decided to take the route through Bulls Gap to get on Interstate 81, but as soon as we got up on the entrance ramp we saw that all the traffic was at a standstill. The delay was due to a truck burning, and we found out later that a woman was killed due to a secondary accident after we came through that area. 
We had an uneventful but tiresome trip to Little Rock but when we got to Memphis, there was another backup due to road repair. My brother, who lives in Memphis, told me an alternate route to take to avoid the repair area. We also took time out to visit with my brother for about an hour and a half while in the area. We left Memphis in the rain and later it was raining hard and was dark. It was really difficult to see at times. We arrived at the apartment at Pallisades at about 10:15 pm EST.
We just rested up and enjoyed having no schedule today. We have a busy test schedule the next two days. 
Right now, there are tornado warnings out and the warning sirens are going off all around the area. It is a pretty unnerving sound. I have never heard a tornado warning siren before.  It looks like the situation might be getting better now for the area where we are located. I sure hope so.