July 30, 2015..

Before I go into writing my blog for today, I thought it would be a good idea to post my previous blogs so they can be easily accessed. Read each blog starting at the bottom of the page except the first one that started in April, 2013.

My first attempt of three to collect stem cells starting in April, 2013

The three attempts took almost 15 weeks that we spent here.

Our trip to Yellowstone National Park in the fall of 2013

Our trip earlier this year to Mobile, AL and Gulf Islands National Seashore in Florida

We were at the hospital or MIRT all day today. I got my bone marrow procedure done and all went well. They had changed the location and also the people doing the procedure. They have plans to move it again as soon as funds are available. As I have done three times before, I was sedated before the procedure. I don't like pain. 

After waiting quite a while, we were able to see Dr Van Rhee. He told me that I was still stable with my myeloma indicators. He did not have any results of the bone marrow biopsy. He said the MRI indicated I had a 1cm lesion on one of my lower ribs. He was unsure about it because it did not show on the PET scan which showed no lesions. He said if it was still there when I come back in three months, I will need to have a biopsy done. He added two more drugs to the bank of drugs I am already taking. They are Zometa (bone strengthener) and Diflucan (anti yeast). I will stay on the same treatment that I have been on for over a year. I concluded from what he said, I should stay on it until the treatment stops working. Myeloma treatments do stop working eventually so the patient must go to another treatment. That is one reason it is important that new myeloma drugs are coming on the market. My appointment is to return in early November. I was hoping to get a treatment schedule that would allow us to travel more but I am thankful there is something that will keep this from getting worse so I am not complaining.

For those of you that I have told that Dr Barlogie, the former MIRT director and world respected authority on myeloma, was leaving MIRT on July 1, we saw his motorcycle parked at the same place we have seen it parked so many times in the past at the front entrance. We knew it was his because of the license tag with the CURE MM on the tag.  

I seem to be doing real well after the bone marrow procurement procedure with little pain there. I hope anyone reading this is having a real good day.   

   

July 29, 2015.. When I was here in late March, the nurse helping the doctor I was seeing was filling in for the nurse that was on vacation. The nurse that was filling in is normally doctor Van Rhee's nurse. She was the most helpful nurse I have encountered here. I have become accustomed to putting a call in to MIRT to find out something important like treatment or medications, and I would not be able to contact anyone nor would I would not receive a return call. It is so very frustrating to need to find out something important and not be able to contact anyone. About a month ago, I got a note (as did Dr. Van Rhee's other patients) from her and said that she had been reassigned to another doctor, even with the objections of Dr. Van Rhee. I was so disappointed to hear this. My thoughts were "now I have gotten someone that I can contact if I have a problem or need something important and they have reassigned her". I got some good news last night. Management is leaving her with Dr. Van Rhee. I feel so much better about that now. I sent her a note to her UAMS email address last night thinking I would hear back from her today. About 10:30 last night, I got a reply and she said she would talk to the doctors that determine the results of the biopsy samples as well as Van Rhee. The question was should I wait until Monday to see Van Rhee or go ahead and keep the appointment with him tomorrow. I got a call from her today telling me that Van Rhee thought it best to see me tomorrow since he would not be seeing patients on Friday and would not be working on Monday. He will have partial results from the biopsy and full results from the other tests I have had. If the biopsy should show a surprise later, he can adjust his treatment for me. That sounded fine to me so we will be able to head home on Friday as we had originally planned. 
I had the PET and MRI scans today. The PET took much longer than usual. They have been doing so many scans, they had to rent a mobile PET scanner that is in a big truck trailer outside their normal scanning area. The whole process of using the mobile scanner took much longer than the scans I have gotten using the scanner in the hospital. They have a new scanner in the hospital they will put into use next Monday. When I finished with the PET, I went to the MRI area and as soon as I went to the check-in desk, the lady at the desk lit up with a big smile and came and gave me a hug. She had remembered me when I was here before. It was good to see her again. So many people that work there are so different than at home. For example, we were walking down the hall going to another appointment and this man pushing a trash buggy asked if he could help us find something. He had a really big smile and when we left him, he was still smiling and told us to have a good day. 
Tomorrow, I have the bone marrow at 9am but we plan to be there much earlier than that, so maybe they will start me early so there will be more time to determine the results. We have our appointment with Dr Van Rhee at 1pm.   

July 28, 2015.. I was disappointed in the progress today. Everything went well on my first scheduled things to do at MIRT today, and then I went for a consult with the Physician's Assistant before I was to go for a bone marrow biopsy procurement. During the questions, he asked me if I had stopped taking the Xeralto 3 days ago. I told him I had not and said that I had not been told to do so in the instructions I had gotten from MIRT. He said I could not have the procedure done since I had not stopped taking the blood thinner 3 days prior because it was too dangerous. He rescheduled the procedure for Thursday this week and at this point, I am not sure when I will be able to see my doctor since my original appointment was the same day I am now having the bone marrow procedure. It is important the doctor have the results of the biopsy and the other tests before he can determine the best path forward for me. It looks like instead of leaving Little Rock on Friday as we had planned, we might not be leaving until the following Tuesday since Dr. Van Rhee does not see patients on Friday. 

The Physician's Assistant told us today that my new doctor (Van Rhee) is the best doctor at MIRT and has recently done a presentation to the National Institute of Health. He said he is absolutely brilliant. I look forward to meeting him and finding out what he has planned for me.  

It was very hot here today. The high tomorrow is forecast to be 100. It was in the high 90's today. It sounded kind of funny when they were giving the local weather forecast, they said a cooling off period was coming later in the week. It was forecast to be down to 93.

Tomorrow, I have a PET scheduled to start at 9am and a MRI at 1pm.

We were so blessed to be able to get an apartment for this stay. It is the same layout as we had when we were here in March this year. It is not the same apartment but exactly like that one except for the furniture. We are so fortunate to be able to stay here. It is in the apartment complex called "The Park Avenue Lofts"     The rate is less than we would have had to pay for a hotel room. 

July 27, 2015.. Monday..We made the 620 mile drive to Little Rock after we got a very late start. We were not able to leave the home area to head to Little Rock as early as we had planned because we had to wait until our Credit Union opened to sign a form affirming we had fraud on our checking account where someone had fraudulently used a debit card taking money from our checking account. We had to wait until 9am for the Credit Union branch office to open and take care of that business before we could head to Little Rock. We had a good drive and the traffic was much lighter than many times before when we have made the trip. We had no delays due to wrecks or road construction/repairs. It seems that Monday is a very good day to drive here on Interstate 40. I am sorry that I was not able to update the blog last night. I was just too tired to do it.