November 7, 2013.. We made the two trips to the hospital today for the Neuopogen injections. These injections will continue until the stem cell collection is complete. 

My white cell count today was 1.32, hemoglobin-8.6, platelets-119.

I had forgotten how much my sleep was affected the first time after getting the chemo. It sure wrecks a night's sleep as it did last night for me. I hope that improves soon.

We went to the question and answer session tonight at the hospital. Two new doctors were the ones answering questions. One of them was Zangari (my doctor). It was time well spent. One of the things they said was one food supplement they would recommend was vitamin D3 with calcium. They felt it was very important to get enough vitamin D, but D3 depletes calcium so that is the reason to also take calcium. 

We knew some folks that attend our myeloma support group in Johnson City were here at MIRT this week but I had not seen them. We finally got to see them at the question and answer session tonight. It was good to see someone from back home. We sure wish we were going back with them. They leave to go back home tomorrow.  

November 6, 2013.. Today was a cool, windy day in Little Rock and raining part of the day.

I finished with the chemo pumps today so I am not carrying the bag now. We were at the hospital about 2 hours today. It feels good to be able to walk around normally now and not have to be concerned that I am going to hook the little hoses on something and pull them loose. There are some people here that are on a 28 day regiment using the chemo pumps. It would be hard to do that for 28 days. 

I have felt good today. I expect that my low point will be in about a week or less. I am not sure why there is a delay. I guess it takes that long for the chemo to have its full effect. During that time, my white cell count will drop to a very low level as well as other blood components. I will begin the two injections per day of Neupogen, one at 8am and another at 4pm. This injection is a growth factor and will cause the white cells to start returning. The last times I was here, they doubled the growth factor injections so I was getting 4 shots per day of Neupogen. While my white count is so low, I will avoid other people as much as I can and wear a mask when I am around other people. 

I saw an older and frail man in the infusion area. The nurse asked him how many stem cells he got today and he said they got 71 million. It is hard to believe how much I have had to do to get 4.6 million so far.

My white cell count was 1.96, hemoglobin-9.2, platelets-140

Happy Birthday tomorrow to my sweet niece Dianna.  

November 5,2013.. I felt much better today than I did during the evening hours last night. I took the last of the Dexamethasone (this is what is causing the high blood sugar and fluid retention) this morning. I mentioned in another post that I was on VDT-PACE chemo. The D stands for Dexamethasone. Tonight I will finish with the Thalidomide. This is the T in the VDT-PACE  This Thalidomide prescription had to be special ordered the last time I was here and I had to personally talk with the sender. They keep really tight control on who gets it due to the bad birth defects it caused in the 1960s. One prescription cost over  $7,200 for 28 capsules. I will be off the remainder of the chemo tomorrow after the disconnect at 3pm. It will be good to not have to carry this around 24 hours a day, and taking a shower sure will be easier each night. It took me awhile to figure how I was going to do that with the pumps attached to me, but found it quite easy since the shower has a removable shower head on a long metal hose.

In the waiting room today, we met a lady we had seen earlier this year but had never talked with her. She is from California and drives here for treatment. She knew quite a bit about my new doctor (Zangari). She said as soon as word gets out that he is here, people will be flocking to see him. She said I was really fortunate to get him as my doctor. She said he would be her choice of any doctor here. That all sounded like good news to me. We plan to go to a question and answer session Thursday night where Dr. Zangari will be answering questions along with the director of MIRT, Dr. Bart Barlogie. By the way, Dr Barlogie is one of the top doctors in the world in Multiple Myeloma. He sure is different. He is about my age and rides one of the high speed motorcycles (one like the young guys ride). Each day, I see his motorcycle sitting in front of the hospital. It is has been there each night when we leave. The other night it was there when we left about 7pm. We also saw it there both days on the weekend. We look at going to the question/answer session as a real opportunity to be able to hear one of the top authorities in the world on this cancer.

I have previously mentioned some of my lab numbers. I thought I would show you one of the daily reports. Two days a week, I get additional blood drawn to check the Myeloma markers. I had one drawn yesterday but I have not yet gotten the results. We made these photos using the Ipad. Sorry they are not better. The paper appears dirty but it was a shadow on the page.

As you can see, my lab results today were... white count..2.65, hemoglobin..9.0, platelets..158.

November 4, 2013.. I am finally feeling some of the negative effects of the chemo. I know within the next couple of weeks, I will feel much worse. The time I had this chemo before, I reached a low point a week or so after I went off the chemo. We were at the hospital today 3 hours and 15 minutes. We have a different APN assigned to me this time. I feel good about that at this point. 

My lab results today were... white count..3.13, hemoglobin..8.4, platelets..157. 

We saw a couple today that we met here last June. He has myeloma and when diagnosed, it was pretty advanced. He was unable to walk at the time and was very pale. The next time we saw him, he was walking, had gone on a camping trip and he looked so much better. He looked good today and is not receiving any treatment and has not for several months, not even any maintenance treatments. One very sad thing happened to them one month ago. Their home burned and they lost everything. They had photos on his phone and it was a very nice home.  

November 3, 2013.. Are you skinny and need to gain some weight? Come with me, I have the answer for you to become a person larger than you are now. It is hard to believe but I gained 14 pounds since yesterday. That is, if the check-in scales were correct. I did weigh using different scales so that might have caused some difference in weight. In fact, the same thing happened when I was on the same chemo in April. I will lose it soon after I come off the chemo.

We made the trip to the hospital today. I got the chemo bag replaced with a full one. My white cell count had gone up. I don't remember that ever happening when I was on chemo before. Normally the white count goes down, and I know it will in the following days. I was just surprised to see it go up now. White count today was 3.06, platelets-155, hemoglobin-8.8.

All the nurses that attend to patients in the infusion unit are RNs. There must be 20 to 30 of them plus several APNs that are more on the level of a doctor. Some get attached to patients after seeing them so often. Here is one we have gotten attached to. She takes good care of me and says that her patients are like family. You can tell when you talk with her that she really likes her job. 

Here is a photo of her.

  

November 2, 2013.. I am now receiving the chemo. Remember, this chemo is to prepare my body for the stem cell collection. My understanding is the chemo destroys things in my bone marrow, especially the white blood cells and the myeloma cells. I will be carrying the camera-like bag for 4 days and receiving the chemo 24 hours a day during that time. I will be going back to the hospital each day to get one of the two bags replaced and get the batteries changed in both pumps. One of the bags will last the entire 4 days. During these 4 days, I will be taking other medications, some of them to lessen the negative effects of the chemo and some to supplement the chemo. I went to the drug store and got 9 prescriptions filled that will be used during the chemo time and some after it ends.

We were at the hospital today for 5.5 hours. My white cell count today was 1.87 (limits are 3 to 12), hemoglobin 9.7 (limits are13.5 to 17.5) and platelets 188 (limits are 150 to 500).

I have been asked some questions that I will now try to answer here now. 

Time of posting: The time shown at the bottom of the page of the post is in Pacific time zone. I have not found a way to change that to Eastern time zone yet. 

The port: What is the port that was installed used for? The port has 3 connections and is used the entire time I am here until the time I go for the actual stem cell collection. At that time, it will be changed for a larger port. The port I have now is used to receive chemo from the chemo pumps. It is also where they draw blood samples each day, receive medications and fluids that would normally be given by IV, receive blood transfusions (the chemo causes the hemoglobin and platelet levels to drop and requires blood transfusions to restore levels).

What is MIRT? It is an abbreviation for Myeloma Institute for Research and Therapy. I normally refer to being at the hospital but I am at the MIRT part of the hospital. All are part of UAMS (University of Arkansas for Medical Sciences).

The side effects so far have only been slight except for my blood sugar which was three times the level it should have been. That was after a lower carbohydrate meal than I normally have. The doctor prescribed insulin as part of the routine so I took a small injection. Maybe that will bring the level down. I am going to have to be very vigilant while I am on the chemo. 

Here are some photos of the chemo and pumps that I have told you about. I thought you might want to take a look at what I have been talking about.

Below in the photo, is the carrying bag that contains two pumps and two bags of chemo.

One of the two battery powered chemo pumps

One of the bags of chemo. This one will last the entire 4 days.

The chemo bag below is emptied and replaced every 24 hours

November 1, 2013.. I got the new port put in today. It is inserted into the carotid artery at the neck and the other end goes into the right atrium of the heart. It took longer than the previous two times I have had it done. I think the doctor that did it was just learning how to do the procedure. Someone kept telling her things to do and she seemed to be having problems while she was trying to put it in. The bottom line is, I got it put in and all is well. Tomorrow I start on the chemo that will be delivered by the two pumps I will carry in a bag that looks like a camera bag.
After we finished at the hospital, we went to the Old Mill in North Little Rock. It was shown in the movie "Gone With the Wind". Our friend, Dena, had shown us a photo of this mill in a magazine, and we went hunting it today. We are thinking we had better get our running around done while I am feeling like it. I am including some photos I made at the Old Mill.