J. Michael Jones

I don’t have much to update, but I know family is asking.

The short version is that there is not much new. However, I will expound below.

An important even tomorrow is that I should (the orders haven’t gone through yet) be getting my labs done to look at my kidney function AND to check on my cancerous proteins. My bad protein started at 2658 (normal is <24) when I was diagnosed and were down to 246 (thanks mostly to plasma-paresis) on 2/5/19. Now, we need to know if the chemotherapy is working. If the 246 is plateaued or, better, gone down, then we know the chemo is working. If it is not working, we have to come up with a new plan. The second most used chemo can’t be used with someone like me with renal failure. There is a new monoclonal antibody treatment (daratumumab) that I could use, but is much more expensive. However, the silver lining is that it works better and has less side effects.

This lab will also give me a good view if my kidneys are clearing the toxins; creatinine and BUN, on their own because it will be 55 hours + since I’ve had dialysis.

Tomorrow morning I will need to get this lab scheduled as, for some reason, the orders didn’t go through. The results for the kidney function will not be back until Wednesday and the protein results will not be back until next Monday.

I still request prayer that my kidneys would start to work so I can get off dialysis and that my chemo is working. Please also pray for my symptoms to resolve. I wanted to be clear again, if I only had Multiple Myeloma, I would feel quite normal. While the cancer can eventually take my life, it is not causing me any symptomatic problems.

I do have a long list of (some bizarre) symptoms which is greatly impacting my quality of life. Most of these symptoms are caused (so we believe) by living in renal failure for–only God knows–how long.  These symptoms include; extreme fatigue (I could barely walk to the car 4 weeks ago, now I’ve gotten up to 2.5, flat, slow miles), I also have this strange problem with my heart where it is very fast and with the smallest exertion it spends up, my blood pressure goes way up and I am very short of breath. We did start a heart/blood pressure medication Metoprolol, which is helping some. But it’s not clear why this is happening except for the effects of renal failure on the heart. I wish so much this would go away. I also have  (most likely related to the renal failure) this constant and strange constellation of neurological symptoms, which are more of a nuisance.  I thought these symptoms would go away once I got my renal toxins down. These symptoms have improved 10-20% over the past month. I’m impatient.

I did work 1/2 day last week. That went well. Fortunately, it was in the morning on a non-dialysis day and I had the energy. I will try to repeat that each week. If I ever get off dialysis, I can increase my work load to 2-3 days per week. I made to a church elder’s meeting last week and to church for the first time today. We also had one night where we pretended that life was normal and went out on a date. That was nice.

So that’s the latest. I will update when I get the labs back on Wednesday and next Monday. I do have a week off from chemo, so this week I only have dialysis on three days and the rest of the days I can work on exercising, trying to increase my tolerance.  Mike