November 10, 2015.. I got finished with the testing today! Yipee! I am glad it is over. The PET did not take as long. They have a new PET scanner and it takes only 15 minutes to do a scan where in the past it took about 45 minutes. It still takes a while for the whole process since they inject radioactive glucose into a vein and then I had to wait for one hour before the scan. I pray these scans do not show anything bad. This whole process of scans looking inside my body has me on edge on what they might find. Now, the wait to see what the doctor will say about it Thursday at 1pm.

It was a beautiful day today with sun and was about 72 degrees.

The presidential debate is getting ready to start. I am going to listen to it. May the best man win...or the best person that is.  

November 9, 2015.. Today was a long day just as I thought it would be but we got all the scheduled tests for today completed. We got back to the apartment at about 7:30 tonight. All the tests went pretty smoothly. Before the bone marrow biopsy, a visit with a doctor's assistant is required to have a physical exam. The place where the exam has been done in the past has been relocated to the Infusion Four area. That is the place where we spent so much time back in 2013. When we went there today, it was like a big reunion. It was so good to see some of the people that had been so good to me back in 2013 when we spent 3.5 months here. I felt like I was a celebrity the way they are treating me. I got lots of hugs which always come in handy to have. We got to see one sweet, young nurse that also has a blood cancer. She had been to Houston and gotten a bone marrow transplant. She seemed to be doing well now and showed us her engagement ring. I sure do wish her well. She had been the nurse assigned to me several times back in 2013. It was so nice to see those people and I wish I could have talked to them more. One of the nurses I saw today is one I had posted about back in 2013. During that Thanksgiving, she baked me a sugar free apple pie and brought it in to me. I am including a photo below Reta had made on her Ipad in 2013. As I explained in the blog back in 2013, she lost her 6 year old son when he was run over by a school bus.

When we were checking in first thing this morning, we saw someone we knew from Rogersville. He is a myeloma patient and we had no idea they were here too. I was hoping to see them again sometime during the day but we didn't. He was having tests today too.  

This is what it looks like in the lobby where we go inside each day we are here. 

Tomorrow, I have a PET scan. That is the only test I will have tomorrow. 

November 8, 2015.. We had a nice, relaxing day today. We woke up this morning with the sun shining in the windows with a nice brisk temperature outside. I think it was pretty much that way back home. We rested up from yesterday and went and got some food supplies to last us the rest of our stay here. We meant to do that last night but we were just too worn out. It was cool here and probably got up to about 60. I suspect that is about the same as it was at home. It was warmer than that when we got up yesterday morning at home. 

Tomorrow will be a big testing day. We have to be there at 7:30am and the last test is scheduled at 5:30pm. That test will probably be later than 5:30 since they normally are running behind schedule late in the day. I have several tests scheduled tomorrow including the bone marrow biopsy. 

I did not mention it last night but we were able to get an apartment through Home Away From Home. As most of you know, Home Away from Home is a ministry of Little Rock Church here in Little Rock. We were so glad they were able to accommodate us. The apartment we were able to get is one we had stayed in before. We stay here starting on November 21 last year. The apartment were we are staying is at Palisades at Chenal Valley. The photos below are some Reta made with her Ipad when we were here last year. She did not have one showing the living room.  

To Little Rock in November, 2015

November 7, 2015.. We made the drive again to Little Rock today. The traffic was ok but it was a hard day. We got up at 5am for the trip but we did not get to our apartment in Little Rock until 9:30pm EST. We drove in rain until we got to Harriman then no rain for the remainder of the trip. When we got to Memphis, we stopped and spent some time with my brother who lives there and did not get back on the road until after dark. I had been instructed by my doctors to take a 15 minute walk every 3 hours to prevent blood clots like I had gotten before on a trip from Little Rock. I had not taken into account I could not get out of the car and take a walk after it got dark so I was not able to walk after I left Memphis. It had been about 6 hours since my last walk. The myeloma and the medication I am taking makes getting blood clots a problem so I am hoping, at this time, I don't get more blood clots like I did once before.
We have a free day tomorrow and then a big test day Monday. I start at 7:30am and the last test (a MRI) is scheduled to start at 5:30pm. I don't normally have that many tests scheduled in the same day. 
I am pretty exhausted but I wanted to add to the blog published so the date would be correct on the post. It is now 2:00am EST. Tomorrow should be a much easier day and we are looking forward to it.  

August 1, 2015.. We arrived back home at 10:05 last night. We drove all day in moderate to heavy traffic. We passed 3 wrecks on the way back. One was a truck wreck and the traffic was held up for miles but fortunately, it was in the opposite direction on the Interstate. We are very thankful for a safe trip back home. 

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.