Raging Myeloma

This post has been a couple months in the planning. We are still here and kicking... just not as high.
In my last post we were elated to the fact that the essential oils we were using seemed to be working. Stevan's M-spike was non-existent. He felt good and was doing. However since then, there have been some major issues that have arisen.

Stevan had some problems with his collar bone at the end of Sept. He felt like maybe he had broke one when he was rolling a cedar log out of a bucket on a tractor. After several weeks, he finally went to a doctor and got an X-ray to show that it was broken... then he started complaining about his other collar bone. Back to the doctor. Yep it was broken too. The doctor suggested we get an appointment with Dr Selby, Oncologist, even though we had just had labs and X-rays done two months before that showed everything was great!

BAM! The M-spike was back to a 3.1 on Oct 16, when Stevan went to see Dr Selby. By this time Stevan was having some other serious symptoms, incontinence, pain wrapping around from his back to his groin area, and swelling in the groin area. Dr Selby immediately sent Stevan to be admitted to OU Medical Center for an full body X-ray and MRI of his spine to see what was going on, and later performed a CT scan. They found a mass pressing on his vertebra in his lower back pressing small bone shards into the spinal cord. They immediately began radiation, starting with the old block kind and then changed to a new kind of radiation that is pencil lead thin to only target the problem areas and protect the spinal cord. He spent two weeks in the hospital and then came home Oct 30th with the   understanding he would have an appt to follow up and continue radiation on his right hip in Paris, Tx, which the oncology team at OU was also concerned about. They were afraid it was going to break.

Stevan finally got into Paris Oncology and began radiation on his sternum Nov 10th. When he was at OU in Oct they told us there was a quarter size hole in his sternum but was now the size of a softball and was now causing a lot of pain and the doctor in Paris wanted Stevan to be more comfortable. Nov 17, the labs showed that his hemoglobin was at a 6.7 and he would be getting 3 units of blood the next day. On Nov 20th, his hemoglobin was up to 8.9, not good but better (the range should be 14-18). They also said that they would stay on top of it and watch it.

Stevan and I spent the week of Thanksgiving up in the hills hunting. The first of the week we had the kids. Wednesday, Stevan's sister Cherl and her other half, Will came up from Mississippi and stayed till Friday with us. Then one of our friends son, Kyle, came up on Friday and spent the night with us.
Overall, not productive in hunting but relaxing and enjoyed the time out side with God's creation.

After Kyle left on Saturday, we decided to load a few things up and take home that afternoon. We should have done this before Kyle left. Stevan asked me to load up one of the 4-wheelers on the small trailer. Long story short, I had problems loading it and it ended up flipping over on top of me, landing me in the ER that evening with a severely jammed left pinky and a broken right pinky. I'm thankful it was me and not Stevan that was on the 4-wheeler. I was able to get out of the way faster than he would have been able to. I was lucky that is all that happened.

Sunday, Stevan's brother, Bill came up and helped us load the rest of the camping stuff. What would have taken all day, only took about two hours with his help.

Thursday, Dec 4, we came to OKC for Stevan's follow up appointments with Dr Herman, Radiologist, and Dr Selby, Oncologist. When he arrived at Herman's office, the nurse noticed that Stevan had blood coming from a his nose. They called Selby's office and they ordered labs which they were able to determine his hemoglobin was at a 5.9, dangerously low. Selby's office ordered us to go to the ER at OU Medical and have them give him another blood transfusion. When we got to the ER, we got in the fastest we ever have, 3 minutes, we didn't even sit down. Within an hour, they had us a room upstairs.

They gave Stevan 4 units of plasma to help his blood to clot. They then began to give him 3 units of red blood over night. He was having sever pain in different areas of his body, so they began to try and see what was going on by scheduling MRIs for those areas. After him spending several days in OKC he was released with nothing really resolved.

The one thing that was discussed was the fact that radiation was not working. It was simply hitting a couple of spots at a time and managing pain. I spoke with one doctor that came to evaluate Stevan and she agreed that the radiation was not working, that his treatment had to be changed.

I will post more when we have more information...

Getting Oily

So what have we been doing that has made a difference in our life over the past several months. Essential Oils... What are Essential Oils? In short essential oils are aromatic volatile oils that come from plants or plant parts ~ roots, resin, leaves, flowers, shrubs, seeds & more that contain the healing properties of the plants. They are in lipid form and penetrate readily into our cells effecting their benefits on us. Some ways of using essential oils include inhalation, topical application or as dietary supplements. The oils with their light molecular weight are easily absorbed by our skin in topical applications and enter readily into our circulatory system. Sometimes their effects are almost immediate.

So why have some of you not heard of essential oils? Well essential oils have been around for thousands of years. But drug companies cannot make money off of them since they are are from nature and cannot be patented. Therefore, essential oils will not be put into pharmaceuticals because drug companies won't pay to study them. So that is why you probably haven't heard a doctor recommend them.

So why essential oils? There are many reasons but to name a few, essential oils are natural, gentle to our cells, targets multi issues in the body, the more you use the more your life can improve, was created by God, and frequency. What is frequency? It is a measurable rate of electrical energy that is constant between any two points. Every living thing has an electrical frequency. A healthy body typically has a frequency ranging from 62 to 78 MHz, while disease begins at 58 MHz. Here is some examples, Fresh produce - 15 MHz, dry herbs - 12 to 22 MHz, fresh herbs - 2 to 27 MHz, and Essential oils start at 52 MHz and can go as high as 580 MHz!

So why did we decide to use essential?  Back in January a dear friend of mine kept posting about essential oils and they began to catch my eye and interest. I began to read and research oils and their effects on the body. I was amazed at the testimonies of others who had used essential oils. After two weeks of reading and researching and sharing what I was learning with Stevan, he said that we should order the kit and get started in using essential oils in our home. After using Young Living Essential Oils in our home for many months, we began to believe that God had given us these oils as an answer to prayers.

When Stevan went to see Dr Selby in April, we talked about the use of essential oils. We asked him if he was familiar with Dr H.K. Lin research with Sacred Frankincense at OU Medical Center a few years back and he was. We discussed with him about using essential oils along with his chemo.  Dr Selby agreed with letting us begin to use oils on Stevan. He said that it would not affect the outcome of the medicines that he was being prescribed or the chemo.

At Stevan's June appointment we discussed with Dr Selby the possibility of taking Stevan off of his chemo pills, Revlimid for a few months to give him a break. Stevan was tired of taking so many pill and how they made him feel. The chemo pills, Revlimid, was making his neuropathy worse. It made him tired and shaky and he was sick and tired of being sick and tired. We again talked to Dr Selby about Stevan using Frankincense during this time while he was off of his chemo. Dr Selby agreed that this would be a good time to use some alternative medicines if that is what we wanted to. After much reading and research on cancer and on Multiple Myeloma, has led us to our oil protocol for Stevan.

How have we been using essential oils?
The first month we used Young Living's K&B, a liquid supplement containing herbal extracts traditionally used to support kidney and bladder health and is enhanced with pure clove, Roman chamomile, and other essential oils. Its a little bitter so instead of having Stevan take it by the dropper, I put it in two 00 size vegetable capsules for him to take in the mornings. This was to help cleans out his kidneys and bladder after taking the chemo for so long. Young Living's Sulfurzyme was also given two capsules twice a day. Sulferzyme offers the powerful effects of MSM, which is a natural form of dietary sulfur known to support normal metabolic functions, circulation and aid in the body's natural defense system. It also supports the immune system, the liver, circulation and proper intestinal function and works to scavenge free radicals. Young Living's NingXia Red is a powerful antioxidant drink that contains whole Ningxia wolfberry puree specially formulated to energize, fortify and replenish the body and mind. It supplies the body with vital antioxidants and phytonutrients that provide a natural energy supply. Stevan takes one ounce drink each morning.  Frankincense has known properties that help reprogram defected cancer cells. Stevan took 10 drops in a vegetable capsule daily. Lemon is an excellent source of d-limonene and has also had a history of boosting the body's natural defenses. He took 20 drops in a capsule daily.

Both have cancer healing properties but Sacred Frank is much stronger.

Second month we continued the Lemon essential oil, Sulfurzyme, and NingXia Red but switch from Frankincense to Sacred Frankincense, which comes from the Boswellia sacra frankincense tree, which has been researched by Dr H.K. Lin at OU Medical Center and found that it does in fact kill cancer cells at amazing speed. It has been tested for its ability to turn off the DNA of cancer cells and return the DNA to a healthy state. Dr H.K. Lin has not researched Multiple Myeloma but his research in bladder and breast cancer has been remarkable. Here is a few links to some clinical studies done on cancer research using Sacred Frankincense.
http://www.ncbi.nlm.nih.gov/pubmed/19296830
http://www.oapublishinglondon.com/article/656
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3258268/
https://www.aromaticscience.com/β-caryophyllene-oxide.../

This third month we are continuing everything we were doing in the second month. After talking to the doctor we believe this is what has helped push back Stevan's protein level without the use of chemo. Even though his kappa and lambda light chain ratio has gone up we believe this is still better than what effects the chemo has had on Stevan's body. His energy is better than it used to be. He only takes napes once, maybe twice a week. Revlimid has taken a toll on his body, breaking down his muscle mass. He was looking into the mirror last week and realized that his left shoulder (the arm that broke and has a rod in it) is smaller than his right. Of course he has protected and babied this arm since he he was diagnosed. It doesn't help that he's right handed either, so he doesn't work at strengthening the left arm/shoulder. Since he has been having pain and discomfort in his left arm and shoulder, I have been applying essential oils to it as well, but I will leave that discussion for the next post since this is getting a bit long.

I must end by saying that I am not a doctor and cannot legally diagnose, cure or treat. I am writing what we have done and has worked for us. Also I only use Young Living Essential Oils for their purity and Seed to Seal process. If you have questions about what I have posted please feel free to ask.  This post was not intended to sell Young Living but educate others in what I have found. However, if you are interested in purchasing a Young Living Everyday Oil Kit and become a wholesale member to acquire essential oils at a discount you can sign up here https://www.youngliving.com/signup/?sponsorid=1644383&enrollerid=1644383  There are several options to begin using Young Living but I can testify that the Premium Starter Kit is the best deal and wont disappoint.

Thank you for your continued prayers. God has continued to bless us over the last several months. He is good!

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.