Taking It Easy

We both slept pretty good last night. The transplant resident and Dr Selby stopped by this morning. They repeated what the eye doctors had told us yesterday. Selby said that they didn't want to get the Neuro team involved in order to have to take a biopsy of the mass. They are pretty sure that the mass is due to the myeloma cancer plasma cells. They want to finish running the test and do a full body X-ray to see if they can find any other myeloma any where else.

Selby is pretty sure they will find more evidence of myeloma else where in the body. He sounded scared to go into Stevan's scull and try to take this mass out. He said that if there is other myeloma else where they will have to treat it with chemo as well, so they might as well treat this mass the same way.

With this being Sunday, we were pretty sure that they weren't going to do anything today but this afternoon they came and got him for his full body X-rays. We will get those results tomorrow along with all the blood lab results that were done yesterday.

We have also been able to visit with a friend, Beth, who is also in the hospital up here. She had a brain tumor removed back in Sept. We had been meaning to visit her but never could find the right time. It was nice to visit with her since she is up here by herself most of the time. Stevan would get her to laughing so hard. I think it was good for both of them to share their stories and compare.

We got caught up on sleep and rest today. I'm concerned that this mass could be messing with Stevan's memory. I will be discussing that with the doctor in the morning. Tomorrow will start early and full of questions and hopefully some answers.

Again thank you for the prayers.

One LONG Night and Day

Let me start by saying, those of you who know me know that I am easy going and I get along with most people. We love coming to OU Medical Center and have had a good experience overall. However, early this morning the ER receptionist saw the NOT So NICE side of me. It took me raising my voice and getting nasty with them. I told him that we had driven 4 hours up there and sat in the ER waiting room 7 1/2 hours and I was about to page Dr Holter, who had told us to come up and get a CT scan. We didn't know if he had a tumor, or could have a stroke or what! He told me that he would find out what they could do in the back.

Apparently I rose enough of a stink, they called his name within two minutes at 1am. Dr Godfry in the ER examined Stevan and finally got him in for a CT scan around 3am. Afterward I was able to grab a few Z's by sitting in a straight back chair sideways with my head resting on the walls rail. I'm sure I looked a sight, but I felt a bit better. Around 4:30am the results came back. He has a mass behind his left eye which is making his eye protrude outward.

Dr Godfry called in the emergency eye doctor to come evaluate his eyes. She determined that his eyesight is 20/20 and the mass is not attached to or has any connection to the eye or the optic nerve. The mass is simply pushing his eye outward, which is causing him to have problems with double, blurred and problems with his sight.

About 5:30am, we were told that the BMT unit was having him admitted to room 750, to then determine what they needed to do with the mass. Dr Selby, from the transplant unit, came to visit and evaluate Stevan next. He explained that the mass was more than likely a plasmacytoma, caused by the plasma cells, where they multiply and crowd out normal blood cells, forming a tumor/mass. They want to take a biopsy of the mass, but they are concerned on how to exactly do that. Their first comment was "Can we stick a needle in and through your eye to grab a tissue sample?" WHAT? We don't think so. We had two doctors come in from the Eye Institute to evaluate his eyes, yet again. They concluded that they would follow his progress, but when it comes to getting the biopsy, they were recommending the neuro unit to get involved.

Dr Selby discussed with us the options we had to treat the mass after the biopsy. One option is they can treat the mass with radiation, but that could risk and damage the eye. Second to treat with chemo medicines, Dexamethasone (or there was something else he rattled off to use) and hope that it shrinks it down. Finally, they might be able to take it out.

They got a chest x-ray and did a lot of labs, including the 24 hour urine sample, to check out the myeloma levels in his system. They are looking at his back again and the problems he's having with it.

This afternoon we got some sleep. I forgot to bring my glasses, so I took out my contacts and went blind for a while to rest my eyes.

I figure we will be here for several days. I doubt if we get any answers until Monday. Thank you for the prayers. More updates to come tomorrow.

Ending Another Year and Beginning a New Year

Happy New Year everyone. We hope that everyone had a wonderful Thanksgiving and Merry Christmas also. Its been a couple of months since I updated everyone, so let me catch you up on the last two months.

Stevan was lucky enough to kill a big buck the first day of muzzel loading season. We had a terrific week of Thanksgiving in the woods, camping and hunting. Stevan was sick for a few days at the beginning of the week but pulled out of it with lots of sleep and NyQuil. Dustin was lucky enough to kill an eight point on the first day. Brett saw several bucks while she was out with Stevan. Me... yeah I wasn't that lucky to see anything long enough to throw my gun up and get one. There is always next year.

I finished a graduate math class in December and will be starting another one in a week. I have been short 6 hours of graduate math classes. By finishing these two classes, I will then be qualified to teach at the college level full time. Something I've been interested in for a while.

Stevan has continually complaining about his ribs and back hurting throughout deer season, but would never want to go get it checked out. Until the second week of December, when he and a friend went for a drive up to the hills. His back was hurting so bad that he couldn't drive. When I got home I found Stevan in bed. He couldn't hardly move. Even with several pain pills, he was still in a lot of pain. This got us very worried so the next day, he was still hurting. I called and left a message for Patti, the nurse at the transplant clinic, letting her know what was going on and what should we do. I then emailed Stevan's cancer navigator nurse, Sara (Orthopedic Oncologist, Dr Jeremy White's nurse) and told her what was going on. I soon got a reply in the late afternoon asking if we could come in on Monday. I emailed her asking when Stevan was in so much pain then that he was contemplating going to the emergency room to have them check him out, so I emailed Sara again and told her this. Around 8pm, Sara called us asking if we could come in the next afternoon. Dr White wanted to see what was going on. They were very concerned.

So Dec 13th we headed up to OKC. They did x-rays of his shoulder and of his back. Results: everything looks normal. Really! Why was he in so much pain and could hardly move? They were able to get him in for a bone scan of his back to see what was going on at a closer look. Result: at his T-4 vertebre, there is bone missing on the left side of it exposing a nerve. When Stevan sits or stands, it pinches that nerve causing pain.

Dr White decided to refer Stevan to a back speciallist and have him look at Stevan for a possible nerve block for his back the following Tuesday. The back doctor, saw Stevan for about three minutes and refused to do a nerve block. Stevan was feeling somewhat better by then so the doctor said there was too many risks involved with a nerve block. When Stevan can't stand the pain anymore, they will have to go in and do a repair of the vertebrae and build it back up to relieve the pressure off the nerve.

So for the more recent report. Several people have commented that they have noticed Stevan's left eye as being swollen. I didn't notice it until they pointed it out a few weeks ago. He had been commenting that he can't seem to focus out of it. The brightness from the snow on Christmas Day really bothered it and made it water.

Wednesday his left eye was so swollen it looked like it was being pushed outward. Between me and our neighbor, Bendette, we got him to go to Dr Butler, the optometrist. Butler said there was some pressure behind the eye but he couldn't make a determination if it was from the swelling or from something else. He noticed that Stevan's left eye was not tracking with the right one, it was stopping and lagging. He recommended seeing a neuro-ophthalmologist but also suggested contacting his cancer doctor and seeing what she recommended.

I called Patti, our wonder nurse from the transplant clinic that can move mountains, and left a message for her on Thursday of what was going on. She called me back this morning to let me know that she was going to speak with Dr Holter in just a bit and would relay the information on to her and would get back with me shortly. About thirty minutes later Patti called to say that Holter was concerned that this symptom is a result from the Myeloma. She wanted him to come to OU and get a MRI or CT scan to see what was going on. She didn't want him to take any chance by waiting till Next Friday when he has an appt. with his endocrinologist, Dr Hummer.

Stevan originally stated, he was not going, He would wait till Monday. I decided to call his mother. She came over and talked to him and then the kids started in on him to please go. He finally got a few things together and started the truck.

So here we sit, wait in the ER with everyone else, flu, stomach bugs and the crazies. They tried to take him back through the fast-track to get him in and out. Once they learned of his history, they sent him back out to the waiting room to go through the regular route. They said this is not a quick fix. LOL Really? What was their first clue?

I'm not really concerned about him getting sick with anything in here. He's been around so much over the past six months, and done so many things he wasn't supposed to be doing and he's been fine. His last several blood tests show that his counts are good. I'm just thankful he's here in case something is seriously wrong.

I will update as soon as I know something.

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.

Getting Tests Done Day 96

Friday we came up to OKC to meet with Stevan's new doctor, Dr Hummer, intern for endocrinology, who will be working on his adrenal gland deficiency. We got up at 3:30 this morning to get on the road for pre-lab work at 8am and then a series of blood draws after a dose of medicine to see what his adrenal gland is doing. They believe that he doesn't really have an adrenal problem, but after nine and a half rounds of Revlimid, it has his adrenal gland temporarily not working. This lab work today should tell her what's going on with it as well as if there are some other issues going on that we are not aware of.

This afternoon we meet with Dr White, Orthopedic Oncology, about Stevan bone infection issue. We are hoping they tell us that all looks good and the infection is cleared or clearing up. He will have some x-rays taken of his arm and possibly more blood work. Poor guy is always getting stuck!

School started for me last Monday. We got kids in the classroom on Wednesday. Another year has begun. Did I mention I'm also taking an online graduate math class this semester? Yeah... Like I don't have enough to do... I know. With this class and one more in the spring, I should be ready to teach college full time, if I'm given the opportunity.

Off for now.... More info when we have it.

Home Day +72

Yesterday was a day for us to relax and catch up on things. I want to follow up with what happened to lead Stevan to be released. Stevan felt so much better on Wednesday morning. He had not ran a fever since Monday night. He had not had his Vancomycine since Sunday night. Dr White had ran a bone scan and saw that the infection had been responding to the antibiotic and looked better than before. His Potassium was on the low side, so they gave him some per IV and in a couple of pills and then was able to have his picc line removed. They sent the end of it to the lab to check for bacteria or infection.

They have increased his hydrocortisone in the AM from 20mg to 60mg and the PM from 10mg to 30mg for the next three days and then go to 30mg in the AM and 15mg in the PM for the next 30days. He will have an appointment with an endocrinologist on Aug 24 to talk to us about his adrenal insufficiency and how to continue to treat it.

Dr Holter came to visit Stevan and examine him. She said that she wants to wait to do the transplant for at least a month or two. She said that his kidneys are on their way back to being normal, but he must hydrate himself well with water to clean them out and help them to heal.

Before we left the hospital, I asked for copies of the blood work since we were there on Monday. Last night I got to looking at them and to my surprise I found out something that some of my MM readers had commented on and told us to watch for. I had posted before that Stevan's M spike on June 20th was Monoclonal IGA Kappa #1 = .5 and #2 = .1. On last Friday's visit, July 27, his blood test showed his M-spike to be .2 with a small M-skike noted in beta/gamma region. So what does this mean? His M-spike is still dropping and he's not on any maintance therapy.

With all of this combined, we feel like this is an answer to prayers. We hope that in a couple of months maybe his M-spike will be at zero. Definately something to look forward to.

Headed Home Day +70

We are headed home right now. We will be tired by the time we get there, so I will post the details of today tomorrow. Thank you for your thoughts and prayers. God has carried us through another set of unforeseen circumstances. He is an amazing God.