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.