June 8, 2017..  I am really sorry that this post is so late. We spent another day at the hospital then had to get supplies. Creating this post will take a long time. 

I will try to fill you in as well as I can. I will not be coming home anytime soon. The tests show that the myeloma has created lots of new lesions and created some damage that has to be repaired. They will have to get the myeloma under control but first, the damage will have to be taken care of. The damage that is a problem is in my neck. This damage was not there when I was here in late February/early March. It is important to get it repaired quickly because there is not much remaining on one side of a vertebrae. If this should break, it could cause me to be paralyzed. I have to wear a neck collar all the time except while in the shower. With no lifting or driving because if it broke while driving, I would wreck. It will have to be repaired surgically. I will have to be admitted to the hospital tomorrow as early as I can get there then have surgery on Monday. The reason to be there early tomorrow is because tests have to be run there and they are not done on the weekend. The surgery will take about 3.5 hours and I will be in the hospital 3 to 6 days afterwards. I will then have to wait after surgery about 10 days before I can start the chemo to reduce the myeloma. The doctor that will be doing the surgery (the one I saw today) also does a health program on radio on NPR. His name is Dr Thomas Pait. Dr Van Rhee, who is my doctor, said Dr. Pait is without a doubt the best myeloma damage repair surgeon in the world.

The chemo that I will go on is called VDTPACE. Each of these characters represent a chemo and is pretty powerful stuff. I got it in 2013. It is pumped in 24 hours a day. I am not clear how many days I will be getting it but my understanding was it will be 3 weeks. It can make a person pretty nauseated. I now take 20 mg of Dexamethasone at one time each week. It causes me some sleeping problems. In VDTPACE the D is Dexamethasone and I will be taking 40 mg every day. After I finish this, I will find out what my next treatment will be. 

As far as I know, I will not be able to post to this blog for awhile. If you are on a laptop or desktop computer, you will have the ability to get an email when I start posting again.You can click "Subscribe to: Posts" at the very bottom of the page for the posting for October 5, 2013. You can expand each year in the table of contents by clicking the triangle etc. to easily get to the oldest posting to subscribe. 

We were so fortunate to get an apartment at "Home Away from Home" where we have stayed so many times before. We will move there early in the morning then be at the hospital as early before noon as possible. 

I will post again as soon as I am able. Please keep us in your prayers. Thanks so much for caring.  

June 7, 2017.. I finished with all the tests today and I am glad. It has been really difficult to get them all completed this time. They even changed the times today from what I posted last night. I had the bone marrow biopsy at 7:30am and finished it about 10am then I had the PET scan at 3:45pm and finished it about 5:15pm. 

I had to get an extra blood draw to rule out my IV port as being a source of infection. I have been running a fever, at times, for quite a while. Monday night it got up to 102.4. Normally, it runs about 99.5 to 100.4. In the meantime, the APN prescribed a Z Pack for me and I have started taking it.

I would like to say a big hello to my dear brother and his wonderful travel companion Shirley. They are now on a tour of England, Scotland and Wales and reading this blog. I was surprised to get a text message from them and surprised, that they, along with others were reading this blog. 

Kathy and Darlene, thank you so much for your nice comments. They really mean a lot to me.

Tomorrow, I see the doctor and find out what the tests reveal and a plan for the future.

Thanks for following along with us.  

June 6, 2016.. I thought I had better put in an update on my schedule while I have time. They called and have changed my schedule for tomorrow to getting the bone marrow biopsy at 7:30am instead of noon. I am scheduled for a PET at 8:45am and I have to drink some kind of liquid and they said after I drink that fluid, I could not get the bone marrow for another 6 hours. I was not originally scheduled for a PET on this visit here but the APN yesterday thought I should get one. She had someone check to make sure it would be covered by insurance and then it was scheduled. The cost of the PET is over six thousand dollars.

Today, I get a unit of blood at 4:30pm, a CT scan at 6:30pm and another MRI scan at 8:30pm. I hope they are not running late on any of these since it that would cause us to be even later. The MRI I get tonight takes about an hour after it starts.

I most likely will not add anything to this post tonight due to getting back to the room late. 

Trip to Little Rock Earlier Than Expected

June 4, 2017..  We were called to come to UAMS earlier than we had planned. My appointments here were set starting June 18th but the samples that they ran on May 25th showed my myeloma markers had gone in the wrong direction quite a bit. They called last Wednesday and told me I needed to get to UAMS as soon as possible. They started trying to get me scheduled and we made preparations to make the trip. We made the trip on Sunday leaving at 7am EDT and arriving at Little Rock at 5:30pm CDT. I am convinced Sunday is the best day to make this trip due to lower volume of trucks and other traffic. I am sorry I was not able to post anything last night because I was so exhausted and not feeling well, I just could not do it. We could not get an apartment with Home Away From Home as we normally do because their apartments were occupied. We are staying at Towne Place Suites. 

June 5, 2017..  I went for testing today but things did not work out as they had planned. I was scheduled to get a sedated bone marrow biopsy but after seeing the results of my blood tests that were taken earlier in the day, the APN scheduled for me to get a unit of blood. The problem came in when there were long delays in getting the blood ready and the time it took for it to be transfused. I had a firm appointment to get the biopsy at noon but they called at 1:15 and said they were going to have to cancel the biopsy. I did not finish getting the blood until about 1:30. It was a very frustrating day. I did get a scheduled MRI later this afternoon. I will have to get a different type MRI tomorrow and a CT scan along with another unit of blood. The appointment for the MRI scan tomorrow night is set for 8:30pm. We had to wait for 1.5 hours after our MRI appointment time today before I was able to be scanned. The scan tomorrow night takes about an hour so we will probably be late getting back to our room and not be able to post to the blog. The APN that was taking care of things today is absolutely wonderful. We have had some contact with her since 2013 but not until the last year or so did we get to see how good she is. She is very dedicated and caring. She was covered up with work today but went the extra mile to see that I was getting the testing and care that I needed. When we left, she gave me a hug and my face only came up to her shoulder. She is really tall and slim. I sure have lots of respect for her. I am thankful there are people in this world like her.   

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.