Saturday, March 22, 2014

March 22, 2014.. We had a good drive back from Little Rock today. We arrived home at about 10pm. The traffic along the way was not as heavy as usual so we enjoyed the nice sunny day to have a driving trip. We stopped in Memphis and met my brother (who lives in Memphis) at a fast food restaurant and had breakfast with him. It was a real nice visit. It was a nice break and we felt more like making the remainder of the drive after the stop. We are very thankful for a safe trip and glad to be back home. Thank you for following along with us and thank you for your prayers.

We will return to Little Rock in 3 weeks to get started on the new medication. I will continue this blog at that time. 

Friday, March 21, 2014

March 21, 2014.. I learned some new things with my visit with the doctor today. As I said before, the doctor I was originally scheduled with had to be away so I was assigned to a young new doctor from Pakistan. He explained some things about my myeloma that I had not heard before. He said the myeloma I have is rather rare. He said it is slow a growing type and cannot be treated with drugs that are commonly used to treat most myeloma. He said he needed to consult with Dr Barlogie about what to do. We were surprised to see the world famous Dr Barlogie come into the room and he started looking over my file. After looking over my gene array information and other things, he told the young doctor he would recommend me starting on a drug called Mekinist. My understanding from what he said was there is a mutating gene that is causing my particular type myeloma and this drug stops the pathway that allows the gene to mutate. The drug is very expensive and I have to take it daily. One article I was reading online said the cost is over 163 thousand dollars per year. They determined my insurance will cover the cost after I pay the deductible. They will start the process of getting the drug to Little Rock and I will have to return here in 3 weeks. At that time, I will have to get some heart tests done before starting on the new drug and then four weeks after I start the drug, I will have to return to Little Rock again for an evaluation to see if the drug is working.
Tomorrow, we will head home. It will be really good to be home again. I wish we didn't have to come back so soon but I am thankful to get something going that might help me.  

Thursday, March 20, 2014

March 20, 2014.. I finished my testing today. I got the bone marrow biopsy done that I have dreaded so much in the past. It was much different this time. I was able to get it done under sedation. It took much longer since things had to be done as if I was having normal surgery. I had to see a doctor's assistant, two anesthesiologists and lots of preparation before it was done in a regular operating room. It was so much easier than the way I had it done before. I had no pain at all during the procedure. The other way, was really painful in the past. I am going to try to have it done this way in the future, even though, it takes much longer to have it this way. This was my 7th bone marrow biopsy procedure.

Tomorrow we see a doctor to learn what his plan will be for my near future. We found out before we left home the doctor that I was scheduled to see had to be off work for a couple of months due to a family emergency. I will be seeing another doctor.

Wednesday, March 19, 2014

March 19, 2014.. Today was a big day as far as testing for me. I got a PET scan, blood work drawn (12 tubes including two huge ones) and two MRI scans. It was a full day. We left this morning at 7am and returned at 6:30 tonight with no stops in between. I was in the PET and MRI scanners over 2 hours. I was ready to break out of there by the time I was finished. It sure was a long, tiring day for both of us.
Tomorrow, I go for the bone marrow procurement for the biopsy. This time will be different than what I have been getting. This time, I will be sedated for the removal of the bone marrow samples. I think I will like that much better.

Tuesday, March 18, 2014

March 18, 2014.. Today we enjoyed spending some time in our apartment and resting up a bit. In the afternoon, we drove over to see some new apartments Little Rock Church/HomeAway from Home is in the process of obtaining for UAMS patients. These apartments are in a gated community and are very nice. We were really impressed with them.

Return to UAMS in Little Rock--March 17, 2014

March 17, 2014.. We made the drive to Little Rock today with no problems. The traffic was no heavier than usual (but was heavy). We were not delayed due to construction or an accident along our route. Delays have been common in our recent trips here. Overall, we had a good drive but we always arrive tired after the 620 mile drive. The time we arrived in Little Rock was about 6pm. We were able to get an apartment again at Home Away Home as we have during the last three trips here. We feared we would not be able to get the apartment since we were having a short stay this time. We hope it will be a short stay anyway. We won't know how long we will be here until we see the doctor Friday.
We were pleased to find the flowering trees have started showing their beauty. The same Bradford Pear trees that we enjoyed last fall (their leaves were bright red) are now nearing their peak in spring bloom. Last fall, we enjoyed the fall colors at home and when we got to Little Rock, we got to enjoy the color for an extended time.