Today has been a pretty uneventful day. I'm not counting the many times that I was stuck and hooked up to an IV. By that I mean I got four shots at one sitting. I get my blood sugar checked three times a day. I don't have anything new to report that came from doctors.
My niece is coming tomorrow from Memphis to visit and that will be a real treat to see them.
My white count continued to drop from 0.89 yesterday to 0.42 today. I continue to get the growth factor shots so I hope they soon will be making the counts go up. Anytime I am outside the room I have to wear a mask. Overall, I have felt pretty good today but still not as good as I usually feel. I have had no nausea today either.
That pretty much sums it up for today. Hope everybody has a good weekend.

I have quite a few things to report today. I am sorry I'm a little bit late getting this posted. I have had lots of things going on such as getting IVs and nurses coming in.
My white count today was about what it was yesterday it was 0.89. I did get a neupogen shot last night and I don't know whether that brought it up any or not I will also get another one tonight.
Diane, the APN for dr. Van Rhee that we like so much, came by today. We were glad to find out that dr. Van Rhee will return next Wednesday. She thought I might be in the hospital for as long as two weeks more. She said that he would probably want me to go home and come back in about 3 weeks. She did mention the likelihood of a smaller stem cell transplant. We both felt better after talking with her knowing that we do have options as far as treatment even though they may be not conventional and somewhat hard to do. One of the treatments mentioned that they have had success with on difficult patients was using an HIV drug along with the treatment kyprolis that I was on for two and a half years.
I was not nauseated today but I just didn't feel good all day. I know that is because of the chemo and I just have to get through it to get back to feeling better.

The nurse changes out the chemo bags while I was on the four days of chemo. Notice that she has on a protective face shield mask and then the cover wear. It is hard to imagine that I'm getting this pumped in to my body during this time. One of the parts of the chemo is called the Red Devil or doxorubicin.
I meant to explain in the previous post that the PICC line not only goes into the vein but also goes up through the vein up to the heart. Kathy you are right it is good arm jewelry but I just as soon not have it really. I expect that as soon as I am ready to leave the hospital they will take it out.
I continue to go without any nausea today. I'm real thankful for that. I guess this will be my last posting for today.

In the previous posting I meant to say lV and not Ivy. After it's posted, I cannot change it using email so I would have to go to the computer and do an edit using the computer.
Here is a photo of cards that Reta has put up that we have received since we have gotten here. We very much appreciate the cards, they mean a lot.

Today has been uneventful and I've not had any nausea today and I am thankful. I have not felt really good but I'm not sick either just don't feel as good as usual. I thought I would try updating this blog using email and also posting some photos to give it a good test. I thought if I could post photos and make it somewhat more interesting to read.

My white count dropped today to 0.9. I will start taking growth factor shots are neupogen shots later today. That should cause my white cell count to start to recover.

Kathy and Darlene thanks for your comments. We will be looking forward to seeing you all when we get back.

Here is a photo of the PICC line they installed. I will have it until I get discharged from the hospital. They put it in so that they could administer the chemo using my port and use the PICC line for other things like blood and platelets and any other Ivy that I might need.

Just a quick update to say that I've had very little nausea tonight. I was able to get all of the potassium that I was getting pumped in and it just finished about 10 p.m. I sure hope tomorrow I'm not hooked of those pumps again that was five days I was on those pumps. I don't like it. It is so hard to go even to the bathroom. That is all for today.

June 27, 2013..  A doctor came by about 6 p.m. yesterday from the office that did my neck surgery and removed the staples from my surgery incision. The chemo bags ran out about 10:00pm last night. I thought I would be free and unhooked from the IV lines and pumps but they put me on a 10 hour infusion of potassium. I also received a bag of platelets. My white count had dropped to 1.74 when they drew the blood samples about 5am today. I am having some slight nausea at times but nothing bad so far. 
The doctor that makes rounds each day and has been very helpful in providing information asked me if I had a medical background. I told him no and he said I seemed to know a lot about multiple myeloma and treatment. I said I felt like the more I know, the better off I would be. I was pleased with his comment but I wish I knew nothing about multiple myeloma.

I tried to post last night using email and it did not work. I think I have it ok now so if there is a posting that has a smaller font and looks different, it will be due to sending the post via email. Doing this will help me since I don't have to get the computer out and set it up. I have the posting time set to central time. It has not been set for that time zone in the past. 

June 26, 2017.. I am updating the blog early in the day and will probably need to update it later today. So far, I am doing all the updates using the computer. If I use email to update it, that would be much easier but not sure how well it would work. 
So far, I have had no ill effects of the chemo. My white count went from 6.54 yesterday to 4.03 today. It looks like the chemo has started to bring down my counts. 
I checked back on my backup photos and found photos of the chemo bag labels when I got the VDTPACE in November, 2013 and saw that was the same strength that I am getting today.
The side effects of this chemo should start soon and should last 10 days or more days after the chemo start day.

June 25, 2017.. It has been an uneventful day of just getting the chemo and being in the room. Tonight, they will hang the last two bags of chemo that will be pump out about 9:00pm tomorrow night. I will be glad to get unhooked from these lines and pump.

June 23, 2017.. This is the first time I have been able to post an update since the last posting I did on June the 8th. I will try to post the most important things that have happened since then. Remember I want to post them in such a way so that I can reference them later for information. I wish I had done every blog when we come here under the same blog. I see the value in having them all together and I also wish I had given the blog a different name not referencing a time in the title. I fear if I would change it now, it would change the link for people following now.

The posts from today on, for this blog, will probably made using email since I won't have access to the computer. 

Starting after June 8th:

June 9th - 10th, 2017..  Went to hospital to be admitted and got settled in the room. 

During creating this posting which I had completed up to today except for few additions, the computer shut down and I lost everything so I will attempt to recreate what I had. 

June 11th - 12th.. Prepare for surgery and get surgery in the morning on the 12th. Surgery lasted for about 2.5 hours. They had predicted it would take 3 to 5 hours. Our dear friends Steve and Kathy from back home drove over 1200 miles to visit us and give us support. 

June 12th - 22nd.. Spent 10 days recovering from the surgery. During this time I received blood and platelets. As of now, I have received 6 units of blood. I have not kept up with the platelets I have gotten so far but guessing it is about the same number of bags as the blood. Our dear friends Wayne (Ken) and Peggy from back home drove over 1200 miles to visit us and give us support on the 20th. 
Started VDTPACE chemo combinations at 8:30pm. They will be pumping in around the clock for the next 4 days.

June 23rd - 24th.. Not feeling any side effects of the chemo yet. 
They tell me they will start about day 6 through 10. This is when my blood counts will drop so much.


  

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.