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.
This is the story of my husbands' struggles through a stem cell transplant to help control his Multiple Myeloma. He was diagnosed in June of 2011 after his arm broke for no reason.

Us before Myeloma

Celebrating our 5 year Anniversary a few days early. Wow! We've both changed over the past few years.
Thursday, October 25, 2012
Monday, August 27, 2012
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.
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.
Friday, August 3, 2012
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.
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.
Wednesday, August 1, 2012
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.
Tuesday, July 31, 2012
Finally Day +69
Right after I posted my last post we asked the nurse to call Stevan's doctors and see if we could find out what was going on since no one had been back to talk to us. She did and we got to talk to him over the phone.
Dr Lam said that the team of doctors looked at Stevan's bone scan and it actually showed that the infection looked better. So Dr White is a little reluctant to pull the rod out since it has responded to the Vancomycine. We will need to follow up with Dr White about his arm next week. Since his Vancomycine level is so high (he has enough in his system to last five more days) they have decided not to continue it.
So what was the whole problem? They believe a combination of high level of Vancomycine and not enough Hydrocortisone in his system. Back in April, Dr Holter prescribed him Hydrocortisone for him after she learned that he still had been having diarrhea (over a year), diagnosing him with an adrenal gland deficiency. The problem is that we were never told to follow up with a Endocrinologists to explain to us how to adjust his dose when he got sick. They have increased his dose of Hydrocortisone now, which is part of why he is feeling better.
They are going to watch him over night and in the morning. If his blood levels are good tomorrow and he doesn't run a temp tonight then he will be released to go home tomorrow. He is now getting ready to eat since he hasn't been able to all day thinking they were going to operate on him.
God has taken care of us once again. Thank you for the prayers. We can now focus on a possibility of a second transplant. We still have lots of questions for the transplant team over this.
Dr Lam said that the team of doctors looked at Stevan's bone scan and it actually showed that the infection looked better. So Dr White is a little reluctant to pull the rod out since it has responded to the Vancomycine. We will need to follow up with Dr White about his arm next week. Since his Vancomycine level is so high (he has enough in his system to last five more days) they have decided not to continue it.
So what was the whole problem? They believe a combination of high level of Vancomycine and not enough Hydrocortisone in his system. Back in April, Dr Holter prescribed him Hydrocortisone for him after she learned that he still had been having diarrhea (over a year), diagnosing him with an adrenal gland deficiency. The problem is that we were never told to follow up with a Endocrinologists to explain to us how to adjust his dose when he got sick. They have increased his dose of Hydrocortisone now, which is part of why he is feeling better.
They are going to watch him over night and in the morning. If his blood levels are good tomorrow and he doesn't run a temp tonight then he will be released to go home tomorrow. He is now getting ready to eat since he hasn't been able to all day thinking they were going to operate on him.
God has taken care of us once again. Thank you for the prayers. We can now focus on a possibility of a second transplant. We still have lots of questions for the transplant team over this.
A Night Mare Of A Day Explained Day +69
Yesterday was a really bad day. I need to fill in what happened to bring us to a room here at OU Medical Center.
Sunday Stevan slept all morning, but joined us as we went to eat at our neighbors cafe for lunch. He ate a burger but said that his stomach was bothering him and was upset. We got home and I hooked him up to his medicine as always and he laided down for his nap. By 4:30pm he was running a fever, 100.2. At 6:30pm it was coming up, 100.6 and two hours later it was at 101.5. He took two Tylenol and I called the BMT Unit. I let them know what was going on and that this had been going on for a week now. She suggested that we pack up and come in right then. We told her that we were to be at Dr Whites office the next day anyway, we would wait. She said that she would make a note on his record what was going on. By 11pm it had dropped to 99.1.
We got on the road at 6am and headed to Grandma's to drop off the kids and hook him up to his morning dose of Vancomycin, but got a mile down the road and Stevan yelled stop the car. He threw open the door and puked. He said that it tasted like medicine. I gave him some Emetrol and we continued on. About five miles further, he yelled stop again, purging the rest of what was in his stomach. At this point I decided that I was not hooking him up to his medicine until the doctors told me to. I called the BMT Unit again and let them know that we were on our way and what had just happened. I gave him a 25 mg of Phenergan and we continued to OKC to see Dr White.
Stevan slept the rest of the drive to OKC. He had to turn in his 24 hour urine sample and give a blood sample at the lab. They couldn't get it to draw on the first poke and on the second it was going slow (they said he was dehydrated from throwing up earlier). Before they got the comlete sample, Stevan passed out and began throwing up. He was blackout for a good bit (estimate about a minute) before coming too. The lab tech's called the medics and got him a cot but he didn't want to lay down. He was beginning to feel better by the time the medics got there and began checking him out.
I can't begin to tell you how I felt seeing Stevan passing out and throwing up... completely helpless. All I could do was hold the trashcan with one hand and try to hold him up in the chair with the other.
They were wanting to take him to the ER but he said that he had to go see Dr White and see what to do about the rod. One of the medics decided to go talk to Dr White and see if he would come check him out and help Stevan made a decision on what to do. It wasn't long after that Stevan passed out again and started throwing up again. This time he wasn't out for nearly as long. The medic that was watching him said that he was taking him regardless what he said at that point. I told the medic that there was no question, Stevan was going to the ER no matter what.
Stevan was admitted to the ER around noon and they began drawing blood for cultures, labs, x-ray and began an IV fluid. After the ER doctor coming in to check him out, then an orthopedic intern came in several times... By 4:45pm, the orthopedic intern came in and told us that Dr White wasn't going to see him today, but would schedule us another day to check him out and visit with him and then left. Stevan and I looked at each other and came to the conclusion that it seemed that they were about to discharge Stevan and we still didn't have any answers. I decided that this was not going to happen, he had been running fever and sick for too long.
I called Patti, the transplantt coordinator at the cancer center and told her where we were and what was going on and that we were afraid that they were going to release him and we didn't want that to happen. She told me that she would make some phone calls and see what she could do.
About 45 minutes later the orthopedic intern came in and asked if someone had come to update us what was going on. "NO." He then said that they were working on admitting him and see what was making him sick. We were relieved... we thought we were about to have the first bad experience here at OU.
A bit later Dr David Lam from the Cancer Center came in and began to tell us what had been going on behind the scenes and the results of the tests that had been done. Stevan's inflamation level was at a 154 and at an 8 tells them there is an infection. He also said that he knew about Stevan on Wednesday last week and had set up all the tests to prepare him for surgery and was disappointed that Dr. White didn't see him. He had also thought that Stevan was about to be discharged and he started making phone calls to make sure that didn't happen. Apparently he got pissed off and called Dr White's Intern and pissed him off, who in turn called Dr White and pissed him off. Dr White then called Dr Lam and chewed him out. During that time some communication finially started happening and Dr Lam found out that Stevan was on the schedule for surgery Tuesday afternoon, something Dr White's Intern failed to tell Dr Lam.
Dr Lam is a very committed doctor, he continued to come in and informing us of things that we needed to know. He asked us who had prescribed Stevan the hydrocortizone. I told him Dr Holter. He wanted to know if we had followed up with an Endocrinologist. "NO." Did anyone tell you that you should increase his dose when he feels sick? No. Well when he's feeling sick he should double the dose. When he's really sick like he was, throwing up, he should have tripled his dose. That was part of why Stevan was feeling good.
Finally, Dr Lam told us that Stevan's kidney's had taken a hit and were not working right. WHAT? What do you mean? Stevan's kidney's are not "hot", but tests show that his kidney's were not working correctly but it was not permanent damage and with time it was reversible. So what was the cause of this... too high of a dose of Vancomycin. This morning when Dr Lam and Dr Selby came in to visit, Dr Lam told us that Stevan's Vancomycin level last night (almost 24 hours after his last dose) was at 60. WHAT?! Last Monday it was at 25.7 which is high, considering its supposed to stay around 20. No wonder Stevan was throwing up and sick. He was being overdosed.
This morning Dr White also came in and checked on Stevan. He ordered another bone scan to see what was going on with his arm. There was one done before Stevan was released after the transplant. White is having a hard time believing that the bone is infected, considering there is no symptoms in the arm, which is unusual. He said that when the bone is infected, it tells you by having other symptoms. He thinks that Stevan was having a medicine fever, caused by the overdose of the Vancomycin.
We are now waiting on the results of the bone scan to see if Dr White will actually be pulling the rod out after all. If there is no hot spot in the bone, then Dr White is going to suggests that Stevan goes off the Vancomycin and see what happens.
I will post more when we get more information as the day goes by. Stevan is feeling better, he's not nauseous, hasn't ran a fever since last night, 99.3. He's been sleeping this afternoon like he usually does.
Sunday Stevan slept all morning, but joined us as we went to eat at our neighbors cafe for lunch. He ate a burger but said that his stomach was bothering him and was upset. We got home and I hooked him up to his medicine as always and he laided down for his nap. By 4:30pm he was running a fever, 100.2. At 6:30pm it was coming up, 100.6 and two hours later it was at 101.5. He took two Tylenol and I called the BMT Unit. I let them know what was going on and that this had been going on for a week now. She suggested that we pack up and come in right then. We told her that we were to be at Dr Whites office the next day anyway, we would wait. She said that she would make a note on his record what was going on. By 11pm it had dropped to 99.1.
We got on the road at 6am and headed to Grandma's to drop off the kids and hook him up to his morning dose of Vancomycin, but got a mile down the road and Stevan yelled stop the car. He threw open the door and puked. He said that it tasted like medicine. I gave him some Emetrol and we continued on. About five miles further, he yelled stop again, purging the rest of what was in his stomach. At this point I decided that I was not hooking him up to his medicine until the doctors told me to. I called the BMT Unit again and let them know that we were on our way and what had just happened. I gave him a 25 mg of Phenergan and we continued to OKC to see Dr White.
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Only with God's strength was I able to get through yesterday. |
I can't begin to tell you how I felt seeing Stevan passing out and throwing up... completely helpless. All I could do was hold the trashcan with one hand and try to hold him up in the chair with the other.
They were wanting to take him to the ER but he said that he had to go see Dr White and see what to do about the rod. One of the medics decided to go talk to Dr White and see if he would come check him out and help Stevan made a decision on what to do. It wasn't long after that Stevan passed out again and started throwing up again. This time he wasn't out for nearly as long. The medic that was watching him said that he was taking him regardless what he said at that point. I told the medic that there was no question, Stevan was going to the ER no matter what.
As they took him into the elevator, Dr White was coming down the hall. I walked with him downstairs to tell him what had been happening today. White caught up to Stevan and told him that he had to go to the hospital and that he would come over and check him out over there.
Stevan was admitted to the ER around noon and they began drawing blood for cultures, labs, x-ray and began an IV fluid. After the ER doctor coming in to check him out, then an orthopedic intern came in several times... By 4:45pm, the orthopedic intern came in and told us that Dr White wasn't going to see him today, but would schedule us another day to check him out and visit with him and then left. Stevan and I looked at each other and came to the conclusion that it seemed that they were about to discharge Stevan and we still didn't have any answers. I decided that this was not going to happen, he had been running fever and sick for too long.
I called Patti, the transplantt coordinator at the cancer center and told her where we were and what was going on and that we were afraid that they were going to release him and we didn't want that to happen. She told me that she would make some phone calls and see what she could do.
About 45 minutes later the orthopedic intern came in and asked if someone had come to update us what was going on. "NO." He then said that they were working on admitting him and see what was making him sick. We were relieved... we thought we were about to have the first bad experience here at OU.
A bit later Dr David Lam from the Cancer Center came in and began to tell us what had been going on behind the scenes and the results of the tests that had been done. Stevan's inflamation level was at a 154 and at an 8 tells them there is an infection. He also said that he knew about Stevan on Wednesday last week and had set up all the tests to prepare him for surgery and was disappointed that Dr. White didn't see him. He had also thought that Stevan was about to be discharged and he started making phone calls to make sure that didn't happen. Apparently he got pissed off and called Dr White's Intern and pissed him off, who in turn called Dr White and pissed him off. Dr White then called Dr Lam and chewed him out. During that time some communication finially started happening and Dr Lam found out that Stevan was on the schedule for surgery Tuesday afternoon, something Dr White's Intern failed to tell Dr Lam.
Dr Lam is a very committed doctor, he continued to come in and informing us of things that we needed to know. He asked us who had prescribed Stevan the hydrocortizone. I told him Dr Holter. He wanted to know if we had followed up with an Endocrinologist. "NO." Did anyone tell you that you should increase his dose when he feels sick? No. Well when he's feeling sick he should double the dose. When he's really sick like he was, throwing up, he should have tripled his dose. That was part of why Stevan was feeling good.
Finally, Dr Lam told us that Stevan's kidney's had taken a hit and were not working right. WHAT? What do you mean? Stevan's kidney's are not "hot", but tests show that his kidney's were not working correctly but it was not permanent damage and with time it was reversible. So what was the cause of this... too high of a dose of Vancomycin. This morning when Dr Lam and Dr Selby came in to visit, Dr Lam told us that Stevan's Vancomycin level last night (almost 24 hours after his last dose) was at 60. WHAT?! Last Monday it was at 25.7 which is high, considering its supposed to stay around 20. No wonder Stevan was throwing up and sick. He was being overdosed.
This morning Dr White also came in and checked on Stevan. He ordered another bone scan to see what was going on with his arm. There was one done before Stevan was released after the transplant. White is having a hard time believing that the bone is infected, considering there is no symptoms in the arm, which is unusual. He said that when the bone is infected, it tells you by having other symptoms. He thinks that Stevan was having a medicine fever, caused by the overdose of the Vancomycin.
We are now waiting on the results of the bone scan to see if Dr White will actually be pulling the rod out after all. If there is no hot spot in the bone, then Dr White is going to suggests that Stevan goes off the Vancomycin and see what happens.
I will post more when we get more information as the day goes by. Stevan is feeling better, he's not nauseous, hasn't ran a fever since last night, 99.3. He's been sleeping this afternoon like he usually does.
Monday, July 30, 2012
Hello Hospital Room Day + 68
I'm going to make this short. It's been a L O N G D A Y..... I will go into detail tomorrow what today has dished out to us. In short, this morning we left the house to go to Dr Whites office for his appointment at 11am to discuss the possibility of pulling out the rod in his left humorous that was put in last year but has caused him to develop the bone infection after his transplant. We got a mile from the house and he had me stop so he could throw up. I gave him some Immotrole but a few miles down the road he had to purge again. We were able to keep going with out any further problems. We had to stop at the lab to drop off his 24 hour urine sample, which also meant that they had to draw a blood sample to go along with it... That's when all of Stevan's problems began to get worse. I will leave these next details til tomorrow.
We are now in a room at OU Medical, settling in for the night. Tomorrow will bring more information for you and surgery for Stevan.
Please be patient with me as I try to keep you up to date. It does take time to type everything up in an orderly and understandable fashion and sometimes.... I'm on overload and I can't seem to get the words out because I don't understand what we are being told until I sit and absorb it for a bit. Thank you for your thoughts and prayers. Reading your words here and on Facebook lift me up, while God gives me strength to carry on.
We are now in a room at OU Medical, settling in for the night. Tomorrow will bring more information for you and surgery for Stevan.
Please be patient with me as I try to keep you up to date. It does take time to type everything up in an orderly and understandable fashion and sometimes.... I'm on overload and I can't seem to get the words out because I don't understand what we are being told until I sit and absorb it for a bit. Thank you for your thoughts and prayers. Reading your words here and on Facebook lift me up, while God gives me strength to carry on.
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