Sitting Still

One of the hardest things for a child to learn how to do is to sit still and listen. As a child I learned to sit still and listen in church, school and at the dinner table. As an adult I have learned to sit, watch and listen while sitting in a deer blind or stand waiting for that prize buck to come along. As a child of God I have learned to sit still and listen for Gods voice and his will.

This pretty much sums up what the last two months. Stevan saw Dr White, Orthopedic Oncologist, on Aug 27. He said that Stevan looked great and his labs looked good. All of his numbers were down and indicated there was no infection in his left humorous bone.

On Sept 19, we went to see Dr Holter, his stem-cell oncologist, but she was not available, so we saw her colleague Dr Selby. We discovered that when Stevan did his 24 hour urine sample, it contained 11 grams of protein. This was an incredible amount for this sample. We also discussed his continued diarrhea, which actually prompted  Dr Selby to ask if Dr Hummer, Stevan's Endocrinologist, (saw on Aug 24) had mentioned amyloid. We told him no. (At the end of this post I have included information about amyloid.)

Dr Selby decided that it looked like Stevan had experienced a quick remission period, but now appeared that the cancer was coming back, but he wanted to do another 24 hour urine sample to make sure. When asked what might be the next course of action if it was coming back, he gave us a couple of options. He said that he might be a candidate for another stem-cell transplant if he was to do it sooner than later. Stevan told him that he didn't want to do anything until after Christmas. He said that if he wanted to wait, there was a new drug approved to treat MM, Carfilzomib, that he might be a candidate to receive. He was going to get with Dr Holter and discuss with her.

Finally on Oct 5, we visited with Dr Hummer yet again. She has diagnosed Stevan officially with an adrenal gland deficiency but still wanted to test him on his testosterone level. We mentioned amyloid to her and she said that she normally did not deal with it but it was something that should be looked into by Dr Holter. She suggested that Stevan get into a GI doctor and get a lower GI scope to look into the persistent diarrhea. This is also what Dr Selby had also mentioned when we saw him.

Oct 19, Friday, Dr Hummer called and told Stevan that his testosterone was low, which could be the cause of his low energy levels, as well as other problems such as depression, decrease in bone density and decreased muscle mass. She also said that his other test levels were strange. Some of his levels were high, and others were low... he was a "special case". If she only knew... LOL. She was going to talk to her boss and get back with us on what needed to be done next.

Stevan is feeling good most of the time. He developed a pain in his left ribs last week; thinks he pulled something while we were camping out with the kids over fall break. There is pain meds for that, as he says. He's still having trouble sleeping. I'm working on getting him into do a sleep study. I have questioned for a couple of years if he had sleep apnea and Dr Holter suspects it also. Hes ready to go deer hunting this weekend (the beginning of muzzle loading season) since he's not taking any major pills, isn't doing radiation or chemo. He's ready to sit still and watch for them to come out from their hiding places... Ok he's going out to get some sleep! LOL He says that he sleeps better in the daytime and outside (I think we have a doghouse that's empty... just kidding).

Some have asked how am I. I'm in a good place right now. I have the distraction of teaching my students and taking a graduate class. I'm finding that there is not enough hours in the day to get everything done, but its good for me to stay busy and focused on outside things. I wont lie though, I have my moments of panic and what are we going to do, but with a bit of prayer and the need to get things done, I'm back up and ready to trudge on.

We have both been sitting still, waiting. Trying to figure out what is going on. Listening for a clear voice of what to do next. Not easy waiting for answers but that is where we are at right now and why we haven't written in a while. We still don't know what is going on either, so we saw no reason to post. Honestly, I don't think the doctors know what is going on either at this point. As we have told others, no news is good news. If something bad was going on, we would let you know immediately. So I guess you could say, we don't consider what is going on as bad. We are just being called to sit still.

Thank you for your continual prayers.


More info on amyloid.
Primary amyloidosis is an acquired plasma cell disorder in which a monoclonal immunoglobulin light chain is produced in the bone marrow and usually found in the blood or urine. AL amyloidosis occasionally occurs with multiple myeloma. The amyloid fibrils in this type of amyloidosis are made up of immunoglobulin light chain proteins (kappa or lambda).The short term for this type of amyloidosis is AL, for amyloid of light chain composition. Symptoms can occur in any organ of the body and include heart failure, protein in the urine or kidney failure, enlarged liver, neuropathy or enlarged tongue. Treatment with chemotherapy has been standard; however newer agents are in clinical trials and being found effective.