Prayers For a Friend

Pattie and Pat Killingsworth

http://multiplemyelomablog.com/2015/07/did-all-of-this-really-happen-in-one-day.html

This is a link to a friend, Pat, who is also battling Multiple Myeloma. Stevan and I discovered his blog when Stevan was in the hospital being diagnosed. Pat was going through his first stem cell transplant. That was four years ago.

Over the years, I have been able to talk to pat via phone and email, to get suggestions on what to ask Stevan's doctors on how to proceed with his care. Pat has written four books on Myeloma, which I had purchased and loaned out to another friend, Barbara C., who we became acquainted with who lives in our home town who was diagnosed with Myeloma and was going to Stevan's doctor and underwent a stem cell transplant also. She ended up opting for a tandem transplant (a second one soon after the first) and developed an infection in her blood which ended her life.

When Stevan had his transplant, he had a pretty easy go of it. But he was young, relative healthy and other than developing an infection from his metal in his arm and having to take Vancomycin for several weeks. So these transplants are dangerous and can come with a cost.

I got to meet Pat and his wife Pattie, in March, face to face, at their Multiple Myeloma Beach Party. Pat had been a life line for me and Stevan, giving us so much information and blogging about his experiences and what he has learned over the years since he was diagnosed in 2007. I felt like I was long lost friends who finally got to meet them. It was the last night of the Party that Pat gave us the news that his doctors said that there wasn't much else to do for his Myeloma and that there was a chance that he might not be there next year for the third annual Beach Party. I felt like I had been punched....  It was like hearing I was loosing Stevan all over again.

Last week Pat underwent his second transplant and has not only developed one infection, but apparently several. He is a fighter. I ask that my prayer warrior pray for him and his wife as they go through this trial. He has given his life to help other Myeloma patients and caregiver understand this cancer and this community still needs him to continue his work.

Thank you

Emotional

This has been a very hard week for me. Its been an emotional roller coaster. Its like my mind knows next week is Stevan's and mine 8th wedding anniversary and then 6th month since he's been gone and I feel like everything is falling apart all over again.

Last week the air conditioner quit. Had the guy come out and cleaned the coils out for me... fixed. Ive been up since 3am because I woke up hot... yep it quit again and I can't get the fan to run. So I'll be making another call in about 4 hours to have him come back out.

Before that its been the lawnmower, that won't run, for either the belt won't stay on or something else doesn't work on it.

I hate this feeling of not only being alone but feeling useless. I hate this feeling that I'm drowning and I can't get out. I hate these feelings of feeling lost and helpless. I feel like I've been so strong for so long I'm about to break.

Rascal Flatts - I'm Movin' On

Rascal Flatts - I'm Movin' On: Rascal Flatts

So Much to Say... but So Little Words.

It has been so long since I have blogged. And I should have been, but there wasnt much time. And when there was time, I spent it with Stevan and the kids.

After a long 3 1/2 year fight with Multiple Myeloma, Stevan lost the battle at OU Medical Center on Jan 26 at 4:35, when he drew his last breath.

I lost my high school sweetheart from 25 years ago, my best friend, my lover, my playmate, my hunting and fishing buddy, my companion, my smile, and the love of my life.

He went to heaven listening to Christian radio, peaceful slow breaths, until there was no more.his brother Bill, and I was in the room with him and held his hand as he took his last breath. His daughter, Brett came in; his mother, Shirley came in; his sister, Cherl; my mom and stepdad. It wasn't long before our pastor, Mike Mings and his wife Judy arrived. He was surrounded by all that loved him and he loved. His son, Dustin, had chosen not to stay at the hospital, saying it was too hard for him to watch his Dad be that way and he couldn't do anything to make him better.

I now begin a new chapter in my life. When Stevan married me he told me,"you are a strong independent woman. You don't need me, but you want me." He was right. After being married for 7 years, 6 months and 5 days... I now have to adjust my life. I have to learn to live by myself again. He spoiled me, I could depended upon him, now I have to depended oh my Heavenly Father to get me through this and lead me, along with true friends, family and my church family. 

It's sad but true, death does bring out the worst in people. They become like vultures, seeing what they can get out of you, or from you. No sense of timing to let you grieve and evaluate what has happened. Paying the regular bills by myself are overwhelming as it is, not to mention the medical bills coming in, the funeral expenses. And so many rumors... And untrue stories... And of course those who are spreading them never come and ask me it they are true:

* I was told that Stevan was in a medical study, so all of his medical bills were paid for.... False on both accounts. He wasn't in a study and even if he was, he would still have had medical expenses.

* I was told that all of his funeral expenses were paid for by the American Cancer Society... false. It would be nice if they did, But they don't. Matter of fact, the only thing we ever got from them was a $50 gas card, twice, two different years, to help pay for traveling to OKC, while he was having radiation (that amount paid for one way trip to OKC). They also had paid for several hotel stays during those time of radiation treatment back in the summer of 2011 and Jan of 2013.

This weekend will be the beginning of this new chapter in my life. Stevan will have been gone two months yesterday and eight weeks on Monday. Each day gets better, but still I have tears that flow each day. My goal is to make sure he has a voice in the Myeloma world, and I ensure he is not forgotten by his kids, his friends, his family and his community. How I am to do that? Not sure, but I hope to find out how this weekend.

I will also be trying to back post some of his medical issues that occurred, that I could never get around to post so others can see the progression of his cancer. As one of my coworkers said, I am such a optimistic person, I denied seeing the signs and refused to hear the doctors tell us he was getting bad. It didn't hit me til he was gone.

I had instead put my trust in God and was letting him lead us and guide us through this journey. I will continue to have him lead me on the journey ahead of me. Thank you for the continued prayers for me and our family.

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!