March 3, 2017..  We got up at 5am to get ready to leave but we didn't get away until 8:40am. We had a sunny drive back home with no delays along the way. We arrived home at 8:20pm. 

March 2, 2017..  I had to get the biopsy today on the area in question at my navel. I sure was not looking forward to it but actually dreaded it. You see, the coward in me really shows up. The thought of going into my belly button with something that is going to stick a hole in it and pull out a core sample just really gets under my skin. The procedure actually did not hurt much just the thought of it and the feeling that he was pushing all the way to my back bone in order to get the sample. No, not really...I think my imagination must have been going a bit wild. I will not hear from the results until about the middle of next week. I am praying they don't find any type of cancer there. 
We met with one of Dr Van Rhee's nurses again today to ask some last minute questions before we left MIRT. She has been so helpful not only here but I have emailed her several times on things I needed and she always has gotten them done for me. 
When we were in infusion getting my treatment yesterday, there was a new patient in the cubicle next to us that was from Clintwood, VA. It was nice to meet someone from our part of the country. This was their first trip here. He had been a school teacher in the Clintwood area. They seemed like real nice folks. 
We are trying to get things packed up for leaving in the morning to head home. We do plan to make the drive in one day again. I keep saying that I am not going to do it in one day in the future, but yet we still do it in one day. It seems like each trip gets harder and harder to make like that. On the other hand, it is hard to stop and unpack and then repack things the next morning to get back on the road when we stop to spend the night on the way home. I am just too accustomed to traveling with a camper, I guess.
I want to thank each of you for your comments, notes and text messages, but most of all, I want to thank you for your prayers. 

March 1, 2017..  I am sorry I am so late posting tonight. We just now got home from UAMS and it is 10:20pm CDT. The doctor, nurse practitioner and an RN were there with us to make sure we understood the new diagnosis and what we need to do in the future. We were there over 12 hours today. We did have to make a stop by a CVS and that took about 30 minutes.

I don't know where to start but I will try to explain things the best I can. The news I got from the doctor today was not as good as I expected. The Darzalex was working with only mixed results. It was producing much better myeloma marker results (the tests for myeloma done from blood samples) but was allowing the myeloma to grow and do damage in the bones. In July 2016, I had no bone lesions and in late November 2016, I had two. This time I had five. These were visible on the PET scans and on the MRIs. Most of these were in my neck area with one in my ribs. 

One of the nurse practitioners told me Sunday to tell Dr. Van Rhee about the umbilical hernia I have. He examined it and fears that it might be myeloma instead of just a hernia. He was looking at it on the MRI and PET scans and could see nothing coming through the abdomen wall as it would on a hernia. We were planning to leave to come home tomorrow but we have an appointment for a biopsy from the navel to check to see if it is just a hernia. They will do that without the benefit of me being sedated. I do dread that. Tonight I even had two resident surgeons that were checking the hernia. 

Another bit of news that I didn't know but it was determined when I was here in November that I have gone from being low risk to high risk myeloma. This was determined by doing a gene array in November from my bone marrow biopsy. This test is not done very often. I guess the reason it was not mentioned in November was due to my doctor being gone to the ASH conference and I saw his replacement. 

I will stop the Darzalex/Pomalyst/Dexamethasone treatment and go on Cytoxan/Pomalyst/Dexamethasone. I will get the Cytoxan by IV every two weeks. 

This was not a day for good news, but there is always some good news hidden within even bad news. Thank you everyone for your continued prayers.     

February 28, 2017..  We got an early start to get the PET scan done this morning and arrived there 30 minutes early. When we got there, we found out the new PET scanner was down. They were using the old scanner but there was a back log of people waiting. We waited in another part of the building and finally got a call 2 hours later saying the scanner was back up running again. I was finally able to get that part of the tests done. Later in the afternoon, I got the final tests of two MRIs. That wrapped up the testing that I will need to have done on this trip. Tomorrow morning, I will get a treatment of Darzalex. I normally get this treatment at KHO in Kingsport but since the schedule for it fell during this trip, I need to get this one here. It will be interesting to see if there is a difference in how it is done here and how they do it in Kingsport. 
As most of you know, the Kyprolis, that I was on for two and a half years, stopped working and I had to go on another treatment. The new treatment is Darzalex. It was FDA approved in December, 2015. It appears to me the Darzalex is working. It does not work for all patients so I was concerned yet hopeful that it would work for me. It appears, at least to me, that is is working. I will know more when the doctor goes over things tomorrow afternoon after he looks over the test results.
There were tornadoes in areas around Little Rock late this afternoon but so far, there have been none close to us. I am very thankful for that. 
Darlene, Kathy and Kent, thank you for the comment you left. They are much apprecated. 

February 27, 2017..  I completed the bone marrow biopsy procedure today. It went really well. I just don't mind it at all now since I get it while sedated. It sure does make a big difference. I think back at how bad it was when I was having it done without being put to sleep. It was just awful. Cutting through the bone was not all that bad but when they pulled it all out was just about unbearable for me. Some people don't seem to feel that pain but I sure did. Now, I am just asleep and feel nothing. 
The bone marrow procedure was the only test I had today but tomorrow will be a big day with PET and two MRI's. The PET starts at 9am and the last MRI starts at 5:30pm.
Thank you Darlene and Kathy for the nice comments you made on the blog. I sure do appreciate you doing that. Darlene is the leader of our myeloma support in Johnson City and Kathy is half of the couple Kathy and Steve that we do things with like trail riding on the ATV and go camping with.
I understand there is bad weather forecast for home and there is for here also. I hope none of us have any bad weather.    

February 26, 2017..  I had one appointment today (Sunday). It was for a physical exam in preparation for the bone marrow procedure tomorrow and for them to take blood samples. They collected 11 tubes of blood.
I have an umbilical hernia that I have had for a long time but it has not bothered me until recently. The nurse practitioner that examined me today was concerned about it causing me a serious problem. After hearing her explain what could happen with it, I got concerned too. I will soon call a general surgeon's office in Kingsport and see what I can do about getting scheduled to get it repaired.
Tomorrow, I have the sedated bone marrow procedure. We have to be there at 7:30am.

We Return to Little Rock on February 25, 2017

November 24, 25, 2017.. We left home on February 24th at 8:50am and headed for Little Rock. Our plan was to stop, take a break and spend some time with my brother in Memphis. We had an uneventful drive to Memphis and spent the night at my brothers house and left to complete the remainder of our trip at 12:45pm today. We are in an apartment at Fifth Avenue Lofts. We have stayed in apartments that are on the ground floor before but this time, we are on the fourth floor. It was harder getting everything unloaded from the car and into the apartment but we actually like this apartment better than the ones we have had in the past. We will enjoy our stay here. Tomorrow, I  have an apointment at UAMS/MIRT at 2:30pm.