Saturday, March 4, 2017

March 3, 2017..  We got up at 5am to get ready to leave but we didn't get away until 8:40am. We had a sunny drive back home with no delays along the way. We arrived home at 8:20pm. 

Thursday, March 2, 2017

March 2, 2017..  I had to get the biopsy today on the area in question at my navel. I sure was not looking forward to it but actually dreaded it. You see, the coward in me really shows up. The thought of going into my belly button with something that is going to stick a hole in it and pull out a core sample just really gets under my skin. The procedure actually did not hurt much just the thought of it and the feeling that he was pushing all the way to my back bone in order to get the sample. No, not really...I think my imagination must have been going a bit wild. I will not hear from the results until about the middle of next week. I am praying they don't find any type of cancer there. 
We met with one of Dr Van Rhee's nurses again today to ask some last minute questions before we left MIRT. She has been so helpful not only here but I have emailed her several times on things I needed and she always has gotten them done for me. 
When we were in infusion getting my treatment yesterday, there was a new patient in the cubicle next to us that was from Clintwood, VA. It was nice to meet someone from our part of the country. This was their first trip here. He had been a school teacher in the Clintwood area. They seemed like real nice folks. 
We are trying to get things packed up for leaving in the morning to head home. We do plan to make the drive in one day again. I keep saying that I am not going to do it in one day in the future, but yet we still do it in one day. It seems like each trip gets harder and harder to make like that. On the other hand, it is hard to stop and unpack and then repack things the next morning to get back on the road when we stop to spend the night on the way home. I am just too accustomed to traveling with a camper, I guess.
I want to thank each of you for your comments, notes and text messages, but most of all, I want to thank you for your prayers. 

Wednesday, March 1, 2017

March 1, 2017..  I am sorry I am so late posting tonight. We just now got home from UAMS and it is 10:20pm CDT. The doctor, nurse practitioner and an RN were there with us to make sure we understood the new diagnosis and what we need to do in the future. We were there over 12 hours today. We did have to make a stop by a CVS and that took about 30 minutes.
I don't know where to start but I will try to explain things the best I can. The news I got from the doctor today was not as good as I expected. The Darzalex was working with only mixed results. It was producing much better myeloma marker results (the tests for myeloma done from blood samples) but was allowing the myeloma to grow and do damage in the bones. In July 2016, I had no bone lesions and in late November 2016, I had two. This time I had five. These were visible on the PET scans and on the MRIs. Most of these were in my neck area with one in my ribs. 
One of the nurse practitioners told me Sunday to tell Dr. Van Rhee about the umbilical hernia I have. He examined it and fears that it might be myeloma instead of just a hernia. He was looking at it on the MRI and PET scans and could see nothing coming through the abdomen wall as it would on a hernia. We were planning to leave to come home tomorrow but we have an appointment for a biopsy from the navel to check to see if it is just a hernia. They will do that without the benefit of me being sedated. I do dread that. Tonight I even had two resident surgeons that were checking the hernia. 
Another bit of news that I didn't know but it was determined when I was here in November that I have gone from being low risk to high risk myeloma. This was determined by doing a gene array in November from my bone marrow biopsy. This test is not done very often. I guess the reason it was not mentioned in November was due to my doctor being gone to the ASH conference and I saw his replacement. 
I will stop the Darzalex/Pomalyst/Dexamethasone treatment and go on Cytoxan/Pomalyst/Dexamethasone. I will get the Cytoxan by IV every two weeks. 
This was not a day for good news, but there is always some good news hidden within even bad news. Thank you everyone for your continued prayers.