Us before Myeloma

Celebrating our 5 year Anniversary a few days early. Wow! We've both changed over the past few years.

Saturday, January 25, 2014

GI Appointment

Last week, Stevan and I headed to OKC to visit with Dr Hong, the GI doctor that we have been trying to get in to see since September. Apparently, the front office didn't thinking Stevan getting in to see the doctor was very important, that's why they kept canceling and rescheduling his appointment.
This is why it is very important to make sure you let your referring doctor's office schedule your appointment and when they keep rescheduling, let your referring doctor and nurse know about it. We love Dr Selby's nurse, Kylie. It seems like I can call her with just about anything related to Stevan and she can get me an answer within 24 hours.


So now onto what we learned at the appointment. Dr Hong went through all of the possibilities that could be causing Stevan's diarrhea all of this time. He ruled out a parasite since he's been tested multiple times. He thought that maybe Stevan's adrenal gland was still not functioning right, even with the hydrocortisone dose. He wanted me to contact Dr Hummer, Stevan's Endocrinologist, and see if she would order tests to see.


I have since spoke with Dr Hummer and she said it wouldn't be as easy as ordering a test since Stevans now taking Dexamethasone. She explained that it stays in his system longer than the Hydrocortisone, so we cant take him off of it to test him. She believes that his Hydrocortisone dose is good and this adrenal issues is not the source of the problem.


Dr Hong wanted to test for gluten intolerance or celiac disease, which just required a blood test. He also thinks there is a possibility that its irritable bowel syndrome, which really means anything could be wrong. It seems that if they cant figure out what is wrong they call it IBS. Finally Dr Hong thinks Stevan's problems could be from being radiated on his lower back in the fall of 2011 or possibly cancer of the bowels or colon (prayers that this is not the reason).


To rule out each of these, Stevan got the blood test that day for celiac disease. He now has an appointment for a colonoscopy for Feb 27th to rule out colon cancer and any other problems with his bowels. They are also going to look at his hemorrhoids and see if they need to be clipped.


I believe that Stevan originally had diarrhea due to his adrenal gland issues, but now has it from the radiation to his gut for his lower back. But then again, I'm not a doctor. I do hope we finally get some answers with in the next month and we get it resolved.


In a couple of weeks Stevan will get an MRI and body x-rays to make sure that everything is ok. Thank you for the prayers and for following our journey.

Sunday, January 12, 2014

Progress

Of the new year, I'm back at work, managing classes, making lesson plans, grading papers/quizzes/tests, and covering classes for other teachers who are absent during my conference time on some days. On the days I get to have a planning period, I'm still tracking down appointments for Stevan, as well as medicine orders, testing dates and calling/talking to people about programs for financial help and getting details on qualifications for foundations that can help financially on Stevan's medicines and medical procedures.

Earlier this past week, while I was paying Stevan's Revlimid copayment from December, I got to speaking to the woman and she suggested four foundations that I was not aware of. She told me they may be able to help us with our copayment for his Revlimid. Yeah! We can always use some help when it comes to paying medical bills. Then on Friday when I was ordering his new Revlimid script from the mail order company, we discovered that his copayment copayment has gone up from $60 to $100 a month. (And I had thought $60 was high!) yep we will be looking into getting some help from one of the foundations that I was told about. 

While I'm thinking about I also discovered this past week that I miss heard the doctor when he was telling us about Stevan's Revlimid. I thought he was reducing it from 25mg to 10 mg... I was wrong. He's leaving it at 25mg for 21 days then off 7 days. That's still better than what he was doing, 25 mg everyday. This will give his body a little bit of a rest.

The best news of the week is we finally got an appt with Dr Hong, the GI doctor! This Wednesday we will be seeing him! I got to speak with his nurse who apologied for us getting the run around from their front office. They are going to look at Stevan's upper and lower scope that he had done back in Nov of 2011.  Hopefully they will find out what has been causing Stevan so much problems over the past 4-5 years. Yes, he was having problems even before his gut was radiated back in Nov of 2011. 

So we have a lot happening this week. We would appreciate prayers of safe travel this week as we go to the city and that all goes well at the doctors office. Also for time management so that I can get all that I need to get done this week at school and at home. 




Sunday, August 25, 2013

End of Summer- Fall is here!

Yeah I know... It's been too long since I've posted. So let me catch you up on how everthing is and whats been going on. I'll be brief.

We have had a great summer. It began with Stevan going to see Dr Selby at the end of May. We discussed and decided to have Stevan go on maintance cancer medicine. He start that at the end of July. This time around it upset his stomach. He had been nauseous most of the time. I upped his nausea medicine and that has seemed to help.

I had a pretty big garden this summer. Lots of tomatoes, cucumbers, several kinds of squash and peppers. I was able to sell our extras at our local farmers market. It was nice to have a bit of extra cash to put back. Since school started, I've been giving away okra, the remaining small tomatoes and peppers that are still coming off. This summer I was able to can tomatoes, stewed tomatoes, plum jam, cinnammin spice fig jam, and jalapino jam and freeze corn and squash. Since school started, I've been giving away okra, the remaining small tomatoes and peppers that I've finally gotten a few nice pickings of greenbeans, enough to can a couple of dozen quarts for us to enjoy over the winter months. I love homegrown foods, better than store bought. It's a lot of work but so worth the reward latter down the road.

We chose to take that extra money I had put back and take the kids to Branson for a couple of days before school started for them, to make some memories and have a bit of fun. The first night we went to the Dixie Stampeed, which I had had not seen Dustin smile and laugh that much in a long time. We then spent the next day at Silver Dollar City. We were tired and worn out, but had a great time.


We went back to Dr Selby last month. Stevan's blood work revealed that Stevan's protein levels were up. Back in April his M-spike had been .3, now it is at 1.1, not good! His Kappa Light Chain went from 38.94 to 190.41! And his kappa/lambda,free is now at 23.08 (normal is .26-1.65ratio). Yes the doctor was concerned as we're we after we had a few days to process it all. 

Selby discussed a couple of options with us, go back on his belly shots of Velcade, or upping his dose of Revlimid or upping his dose of Revlimid and adding Dexamethasone back to the mix. After looking at throwing pros and cons and the fact that he had responded quite well to the mix of Dex and Revlimid in the past, we chose the latter drug protocol. 

Stevan's been on it now for a month and seems to be doing well. The nausea is gone, thanks to Dex, which does keep him up on Monday and Tuesday nights, so he takes a strong sleeping pill, which nocks him out til morning. The Dex has givin him his energy back. He doesn't seem to be sleeping as much as before. There are days he takes a nap, like on the weekends, but those are usually the days I take one with him because we are both exhausted! 

The first quarter of school ended for me this past week. Wow, how time flies! I just realized that I hadn't posted since April. Those of you who know us personally know that the next month and a half will be deer season for us, so we will spend a lot of times out in the woods and mountains north of us. Next week is youth hunt for the kids. And then the next two weekends will be muzzleloading season. Stevan and I love this time of year, spending time with family, God and admiring his beautiful creation around us. Stevan has always said he feels close to God out in the woods. I have to agree with him. I spend a lot of my time sitting and talking to Him and telling him how thankful I am. God has been good to us and has taken care of us throughout this year. There will be many things to be thankful for this year at Thanksgiving.

Thank you for your thoughts and prayers. We have so many friends that we hold near and dear to our hearts, sometimes words are not enough, but we do what we can to repay your kindness.

Saturday, April 20, 2013

Can You Answer The Question?

So what do you get when you have had cancer for two years, a round of radiation to you arm, Revlimid for nine cycles, a stem cell transplant, bone infection, eight weeks of antibiotics, a soft tissue mass in your eye socket, full cranium radiation, and finally four rounds of Velcade? Yes a bald head! But there's a bonus too....

Thursday, we went to OKC to visit with Dr Selby, hematologist and SCT doctor. We met with his PA first for her to gather all of the information on Stevan. The typical, aches, pains, symptoms, sleep patterns, nauseous, and medicines. Good news, his M-spike in January was a .6 and when we last saw Dr Selby at the end of February, it was .3. Yeah it dropped! They took more blood today to see what it is now, three weeks after the last dose of Velcade.

Stevan has been sleeping a LOT more over the last three weeks too. They think because he's not taking his Devil Dex (Dexamethasone), which gives him energy and does keep him up for a few days after his once a week dose. He's also been nauseous after eating most meals. Yes, he has nausea medicine but he won't take it unless I make him. He usually eats lunch with friends during the week which then makes his stomach upset. Then at night he doesn't want to eat anything because his stomach doesn't feel good. He'll resort to eating three to six oranges for dinner. Apparently the acid from the oranges doesn't hurt his stomach but settles it. Selby want to put him an enzyme that his pancreas might not be producing, which is why he could still be having diarrhea. They were going to give us some samples to try before getting a script to check it OU and see if it works, but we forgot to get them before we left. I spoke with the nurse on Friday, and they are going to mail him some to try.

Stevan has been experiencing some sharp pain in his head, behind his left eye, where the mass was and where they did radiation. They think this is just from the radiation, but they want to do an MRI of his head to see what's going on. They will try to schedule that in a couple of weeks and have a follow up appointment with Selby to discuss lab results and future treatment options.

Stevan's been having some pain in his lower left leg when he's sitting in his chair or in bed. Selby wants to order an image of his leg to check and make sure it's not Myeloma causing problems. Other possible causes is peripheral neuropathy or restless leg syndrome. There is no swelling so that's a positive note. By the time we got his blood drawn and headed to radiology, it was well after 5:30pm and they were closed for the day. So when I called Friday morning to see what that means. They decided to send him to Paris Imaging Center to get the X-ray done, so they can have the results when we go see Selby again.

So to answer the original question... Thursday early morning, Stevan said that he brushed off what he thought was a spider crawling on his face then his arm. When he got up, he told me that he thought it had bit him on his right side about six inches or so below his under arm. I didn't pay much attention to it but told him to ask Selby. At the end of his exam and visit, Stevan brought up the bite. Selby looked at it and asked, if he had had the chicken pox. Stevan said no he didn't. Selby said, I bet you did but you didn't know it. So be checked the computer to see what some test they had performed before his stem cell transplant that measured his antibodies. (I got to say how cool is that they can test to see what disease or illness you have been exposed to just by looking at your blood. I never knew this existed! Cool!) Sure enough, Stevan had been exposed to the chicken pox, had a marker of 2.8. Selby then told him, "it looks like you have shingles". With all that Stevan has gone through, even though he says he feels fine on some days, his immune system is extremely compromised and weakened. So after this last round of Velcade, we stopped his Dex and his Acyclovir which was 400 mg twice a day. The acyclovir is what prevents viruses. So now Stevan is back on acyclovir not twice a day but five times a day for seven days then back to his regular dose. They went ahead and took bacteria and viral scrapes for cultures to make sure. We asked Selby what this would mean for Stevan. He said it is quite common for cancer patience to get shingles and with him getting it at a young age, he probably won't have as hard of a time with it. We can only hope and pray.

God will get us through this speed bump. He does have the whole world in his hands.

Wednesday, March 27, 2013

Friday is Good-Last Day Of Treatment

As the title says, tomorrow is Stevan's last day of treatment. Stevan will take his last shot of Velcade. He is excited to complete this and go back to the doctor in a couple of weeks. He's been staying as active as he can. He seems to feel better when he's up and doing things. His back continues to hurt but his left arm and shoulder seems to be doing better.

Spring break was last week for me. Whooooh! No students for a whole week! That's my kind of vacation. I still had 5 sets of tests to grade for my classes, but I had a whole week to do it. And I had my college class homework to do. Other than that, I only did what I wanted too.

The first half of the week was beautiful, sunny, warm days, allowing Stevan and me to do some of the things that we have been trying to get done outside but couldn't ever find the time, or he didn't feel like it. Which by the way, he felt pretty good except on Tues and Friday, which was his treatment days.

He borrowed a tractor from a friend so that we could fix our cattle guard. I thought cattle guards were supposed to keep cattle from crossing it. I guess our cattle are smarter than the average cow. Ours jumps it! Even after fixing it, they are still jumping it. So we shut the electric gate along with the cattle guard. Well, two of my bottle babies from last year, have not only learned to jump the cattle guard, but have also learned to push the gate open and squeeze through it. Back to the drawing board. For now we've disconnected the electric gate and have a chain around the post and gate to shut it. Not my favorite way to open it when it's cold and rainy.

We were able to get some fruit trees planted on Wednesday. He used a post hole digger on the tractor to dig holes for two pears, two apples, two peaches, a plum and a couple of holes for pecan trees, which I plan on digging up at my grandfathers tomorrow.

Last Wednesday evening the cold wind brought in the cold rain... For the rest of the week and weekend, meaning it was indoors for everyone with only Internet and our imagination. (We disconnected the satellite tv at the end of last month to try and save money.) Finally, Sunday evening the sun began to shine a bit, but was still cold.

It was hard coming back to work after a long week at home with Stevan. I got through it though and with tomorrow being Good Friday, I'm off, so this was a short week for me. I won't be going with Stevan to his treatment though. I will let his buddy, John take him as he's been doing over the last eight weeks. I will be doing some things around the house, working on my graduate class, baking a cake, visit with my grandfather and begin to write an essay for my teacher of the year application. Yes, some of my colleagues decided that I needed some more paperwork to fill out. Have I ever said how much I despise writing papers. LOL. It's a great honor to be nominated and its due Monday, so maybe Friday will be a good day to write it.

As you can tell, there isn't much to complain or report about. God is good to us and life is good. Have a Good Friday! Happy Easter! Christ is ALIVE!



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Sunday, March 17, 2013

March-Multiple Myeloma Awareness Month

Happy St Patrick Day I hope you wore your green today. We did! We even learned at church today who St Patrick was. He is known for spreading Christianity throughout Ireland as a missionary during the 5th century. And yes, this is March and its been almost a month since my last post. All is going well considering. So lets make this as short as possible since its late and there really is a lot going on in our lives.

In my world, I'm teaching full time during the week (Mon-Fri), working at our neighbors cafe on Friday evenings, taking an internet graduate class, cooking for Stevan every chance I get to make sure that he's getting a good diet, and making sure all of the cows, dogs, cats, chickens, and ducks are fed each night. We gained an orphan calf a few weeks ago that I get to bottle feed, now twice a day.

On Feb 25 he had an appt with Dr Herman, radiation doctor, who said everything looked good. He also saw Dr Bitner, eye specialist, who said everything looked good there. They had him take a visual field test. He scored 100%! He was pleased with himself. A few days later, Feb 28, we went to see Dr Selby, stem cell transplant doctor. Stevan had been complaining of his left upper arm and shoulder hurting, so Selby had it x-rayed. They did some lab work but all in all said that Stevan looked good. We discussed future treatments options and how many more rounds of Velcade would he be looking at. Selby thinks that 4 rounds will be enough to kick the myeloma cells back into their place. So Stevan will begin his 4th and we hope his last round of Velcade belly shots this Tue. He will be receiving the shot twice a week, this week and next. He will then follow up with Dr Selby on April 15th for a round of labs and get an appt for his PET scan, which he is excited to get. LOL.

Velcade, 40mg of dexamethasone, and Acyclovir is the main cancer drugs that Stevan is taking. He also has his once a month Zometa that helps to harden his bones back up. He's not taking as many naps as he was a month ago, which is allowing him to sleep better at night, unless its Friday when he takes his dexamethasone. The doctor prescribed him a sleeping pill to take on the weekend, so that he can sleep. That has been a life saver for him and me. He doesn't have to watch me sleep and he doesn't wake me up because he cant sleep. NICE!

This week is spring break for me. One less job for me to do... teach and grade papers. But instead I'll be doing some much neglected house work and paper work that I have been putting off. There is a lot of little projects that I have been holding off on doing. Maybe I can knock them out this week. Yesterday we got one completed, digging out our cattle guards so that our cows don't walk across them and get out. We actually had two yearling get out on Friday. One came back this evening. We are still looking for the other heifer.

We have also been worried about my aunt Louise. She was medivaced out of Pakistan back before Christmas for poor circulation in her legs and feet. Long story short, she has been home in Valliant on blood thinners, waiting for surgery to help fix some of her problems. My mom went with her to the Cleveland Clinic to help and support her after her surgery on March 4th. Her surgery went well, but she developed complication with a medicine they gave her. She had some major side effects for several days. After that passed, she began having cramps in her legs. Mom began massaging them and when the pain began moving up her leg, they called the doctors in. After lots of test, they rushed her to emergency surgery for a blood clot, trying to save her legs and a possible bypass. After several hours of prayer, phone calls and anxiety, my mom finally called and said all was good. Not as major as they originally thought, legs saved, no damage to nerves, no bypass needed, but she would be in ICU for several days. The next day they decided that she is having problems breathing. They put her on a ventilator to help her. To say the least her spirits were low, but I'm so glad my mom was there to help encourage her and stay with her. As of today the doctor is going to try to pull her off the ventilator tomorrow and see how she does. Mom says that she is gaining strength and doing better.

So "How are we doing?" God is good to us and hears our prayers. Trying to stay optimistic when its so easy to be down with what we are going through. The one thing that allows me to continue on is knowing that "Be strong and of good courage, fear not, nor be afraid of them: for the LORD thy God, he that doth go with thee; he will not fail thee, nor forsake thee." Deut 31:6, "I will lift up mine eyes unto the hills, from whence cometh my help." Psalm 121:1 and finally "I can do all things through
Christ which strengtheneth me." Philippians 4:13

Friday, February 8, 2013

Update after Radiation

It's been almost four weeks since Stevan had radiation. He's been tired. His head has been red, dry and scaly. Each night I put Aloe Vera Gel or Aquaphor on it to try and heal it up and keep it moist so that it wont make him scratch at it, since it itches. It looks a lot better now, but I continue to put Aquaphor on it since it still seems to get dry, I guess due to the cold weather. He looks good bald. Before we got married he told me I didn't have to worry about him going partially bald, that he had a good hairline. I told him I liked guys with either a full head of hair or completely bald. I guess I'm getting the latter this part of our marriage. LOL.

Stevan is now taking his Velcade shots and his Zometa infusions in Paris. He just finished his 2nd round of Velcade last Thursday. His second round of Velcade has hit him harder. He has been nauseous after he eats but has nausea pills that he can take to help. He says since he's not been throwing up, he hasn't bothered to take them. He has been more tired than usual but it could be from the after affects of the radiation too. He has been in more pain with his bones. We don't know if its due to the Zometa, the bone hardening medicine, doing its job or if its just the fact that his bones are so soft, causing the pain. He had pain with Zometa last year after he began taking it. The pain less as his bones harden and the medicine does its job. It might take a month or two though. Today he said his left hip seemed to popped out causing him so much pain he went to his knees. He said he was sitting when it finally popped back in, again being painful. He's worried that his hip bone has deteriorated, which is not good because that area has already been radiated, so it can't be treated with radiation again.

We know his bones are very soft for the most part because during his bone biopsy in the hospital the doctor hit a couple of places that were very soft. Those were the most painful places for Stevan and the doctor had to change the place he was biopsying so that Stevan could stand the process.

Two weeks ago seemed to be the hardest on Stevan. He had some things going on which made him depressed, seemed to make the pain worst, as well as his personal outlook. He told me that he really thought he was dying, and he just didn't have the motivation to keep going and do things because he hurt so badly. I believe some of it was emotional pain, not just physical pain, even though he was having plenty of that. With much prayer and support from family, friends and myself I think he's working though it. Last Friday, when I came home he told me he had finally had a good day. He said he hadn't had much pain, and he had done some walking around Brinkley's Auction that afternoon and it didn't seem to bother him. Saturday and Sunday also seemed like good days for him as well. Monday night he told me that he thought he was going to make it, he didn't feel like he was dying.

I share this because we have come to realize not everyone understands the scope of his pain and the emotional toil his cancer is taking on him, as well as me. Stevan doesn't complain much, except to me and a few others close to him. He's a very private person and defiantly doesn't want anyone to feel sorry for him, but he wants them to understand what he's going though and understand him. God has walked with us throughout this journey, holding our hands, wiping our tears, and carrying us when we could not go any further. He always provide for us when we have no idea where the next dollar will come from. We have had some wonderful friends and family that have helped us out and continue to ask what they can do for us. I even have parents from school asking to pray for us. All is appreciate and never turned down. We are humbled by how much people care and love us. We just wish that we could do more for those that help us, but I pray that God will bless those who give and protect you from the evils of this world. You are special to us and we love you.