Spring Break

Wow there is not enough hours in the day to get everything done. I've been so busy at school I have not had time to post anything. Finally this week is spring break, so I'm trying to get caught up on things I have not had time to do.

Stevan's MRI and skeletal x-rays came back good. No "hot spots" that we should be worried about. As the Dr Selby said, the cancer is everywhere but it's contained. At Stevan's appointment, over two weeks ago, Dr Selby said  "Stevan's protein level is now at 0.1, basically a zero." Yeah! "What ever we are doing is working for now, so we are going to keep doing it." 

Stevan has been taking Revlimid every day for 21 days and off for seven days. He is also taking Dexamethasone (20 mg) once a week. Old devil Dex is a double edge sword. We love it for helping Revlimid do its job to suppress the Myeloma, and the energy that it gives Stevan for the few days after taking it. However, because it's a steroid, it causes water retention, weight gain and sleepless nights. We have been able to avoid the weight gain so far over the last few months. He's not eating as much as he used too and at times gets an upset stomach, which causes him to loose his dinner from time to time. We have conquered most of the sleepless night by taking a sleeping pill for four nights after taking his Dex dose. It doesn't always work, but for most nights it does. 

We did discuss what we should do when when it quits working, and the medicines available to him. One of which Stevan used last year after his soft tissue tumor behind his left eye, Velcade. It's given as a shot just under the skin and must be given on a weekly schedule by a nurse, which means he would have to make one to two trips to Paris each week, not very convenient and can get expensive to make that drive. So our prayer is that Revlimid and Dex keeps working for a while.

Earlier that same day Stevan got his much anticipated colonoscopy. Afterwards the Dr Hong came and told me everything looked good. He had one polyp at the top of his colon that he biopsied. He also did several biopsies to rule out microscopic colitis. We never got a phone call to tell us the results of the biopsies, so we are assuming that everything is good since he told us if there was something wrong he would start Stevan on medicines before our next appointment, which is next Thursday. So we assume that means everything is good.

Earlier this week Stevan has been playing with some cedar boards that he cut last year. He decided to make us an entertainment center. However, sometime during this time he ended up doing more than he should have and hurt his left arm/shoulder. (This is the arm that has the steel rod in it) He had a six month check up with his main family doctor, Dr Jones this morning. He had Dr Jones look at it and determined that Stevan has partially torn some muscles in his rotator cuff. Jones has decided that he will refer him to physical therapy, which will help him heal faster.

We continue to thank you for your thought and prayers.

Valentines Day

Love is in the air....it's more like coughing and hacking, sniffles, aches and pains. Yeah it's that time of year. Stevan has been trying to get sick but I think we are managing to keep it at bay.

We spent tonight at our church's Valentine dinner and got to visit with friends, enjoyed music and adult conversation. It was nice to get out and spend time with my honey.

Last Monday, February 3, Stevan was scheduled for his MRI and skeletal but due to the snow and ice storm coming down Highway Patrol suggested that no one travel the Indian Nation Turnpike, so we called and rescheduled his appointment till the twentieth of February.  He has been having some pain and appears to be swelling on his right side ribs and towards his back. He doesn't think that he's broke a rib but we are concerned that there is a soft tissue mass there causing some problems inside.  The last time I spoke with Dr Selby's nurse, she said that Stevan's numbers look good and there shouldn't be a problem.

We still have a colonoscopy the following week on February 27, which I have to arrange for a hotel the night before since he will have to drink his special drink... And need access to a bathroom... LOL! 

Thank you for all of your prayers.

Week of Trapping

Stevan has had a good days this week. He has been trapping up in the mountains trying to get a few bobcats. He didn't get any but he got 20 raccoons and one coyote. He told someone yesterday that he had wanted to spend a week in the mountains and that's what he was able to do, even though he didn't get a cat. 

Stevan's supposed to be heading to OKC in the morning for an MRI and skeletal x-rays, but since the weather has moved in and what we have seen North of MacAlister it isn't a good idea for him to go tomorrow. I guess I will be calling in the morning to get them to reschedule it. Not what we want, but it's what we need to do.

It's been a busy week for me. Lots of papers for me to grade and two sets of tests to make out tonight for tomorrow. Hopefully I can manage my time wisely and I can get everything done... So I must get off of here and get busy. Thank you for the prayers.

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.

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. 

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.

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.