Good Things Are Happening

So much has happened over the last week. To start with Stevan gained custody of his daughter, Brett. She told us last October she wanted to come live with us, so we filed for custody and finally got her. This has made a world of difference for Stevan, giving him something to look forward to everyday. Being a full time Dad. Going to pick her up after school, going to her softball games, hearing her talk about the new friends she's making, being the first to learn she scored a 90 on her pre-algebra test on her second day of school, and making the first team on her softball team. It's been good for him!

Thursday we went to OKC to see Dr Selby, Stevan's Oncologist, to get the results of his blood work from the week before. He's had some pains under his left breast for the last three weeks and it seems to have moved around to his left shoulder blade and the back of his left arm (this is the arm that broke three years ago and has a steel rod in it).

We saw the doctors assistant who went over the test results telling us that the kappa light chain had come up from 64.06 to 119 and the lambda light chain was down from 13.18 to 7.98. The last time we had tested, back in April the ratio of the kappa and lambda was about a 5 which is closer to one, which is what the doctor wants. This time the ratio was closer to 15, which is a lot further from one. I asked the assistant about his protein level. She didn't think they tested it, since she didn't see it, but after searching the lab work she found that it said protein no observed! Which means the protein that damages his bones was nonexistent! This is great news!

Dr Selby came in at this point to discuss, Stevan's pain in his chest, shoulder and arm. They think they found a small soft tissue mass under his left breast. He said they think this could be a myeloma mass of cells like what Stevan had behind his eye at the first of last year that they had to radiate. Selby ordered a full body X-ray panel to see if they could determine for sure what was going on there. He said if it came back inconclusive, they would order a CT scan. We have yet to find out the results of the X-rays.

So what have we been doing since Stevan's been off of his chemo for the last two month? This is a question I will answer in the next post. It's one you will want to read. I will try to answer this question this weekend when I have time to write the details of the last two months of alternative therapy.

Thank you for your prayers. They are always appreciate!

End Of The Summer

Summer break began at the end of May, but June and July quickly slipped away. Now its August and I'm back in school. Stevan is headed off to OU this morning to get labs drawn so we can discuss the next stage of treatment with his Dr Selby, his Oncologist, next week.

So much has happened since the last time I posted. We have so much going on with the kids, his treatment and my work and school (yes, I'm going back to school). I will try to post a little bit each day over the next week, to catch everyone back up, if I dont see you on a daily basis.

Our favorite saying is no news, is good news. So nothing really drastic has happened. But we do hope we have good new next week from the doctor and I can then explain some things we have been doing with Stevan's treatment.

So for now. Thank you for the prayers.

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.