Navigating the NET

I have spent many hours researching Carcinoid Cancer and Neuroendocrine Tumors. I am pretty sure I have put more effort and time into this in the last several weeks than I ever did studying to get my four year degree. In case you weren't aware, this is the Cancer that Steve Jobs (Apple) died of. It has been reported that he had pancreatic cancer. He actually had neuroendocrine tumors in his pancreas. I have learned that many times doctors do not accurately diagnose the type of cancer. Some may call it liver cancer, when in fact it is NETs in the liver. The best way to confirm if a tumor is a NET is with a biopsy.

I was telling a friend today that I think this is the only time in my life that I am thankful for my OCD (Obsessive Compulsive Disorder). I know we all joke about OCD, but mine is a real diagnosed disorder. I have had OCD tendencies since I was about 5 years old. At one point, I washed my hands so often that my Mom was afraid I was going to make the skin raw! As an adult, it has been an annoyance to my family. I tend to over think and analyze everything. I have been known to recite my grocery list out loud many times. Over the years, I have gotten better about controlling some of these issues. Some things, I have had to learn to live with due to my chronic health conditions that don't allow me to have things exactly the way I want them. There was a time when I couldn't sit down if there was even one dish in the sink. Don't even get me started about someone rearranging the pillows on the couch! My point is, my issues drive me crazy. Even though I have learned to keep some of my OCD behaviors from irritating everybody around me, my mind still obsesses. It never shuts off. Ever.

Psalm 139:14

 

Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.

 

I have always wondered why God made me so complex. There are days that I get on my own nerves! It is bad when you don't want to be around yourself! Unfortunately, wherever I go... there I am. How can that be marvelous?

 

I am learning that God has a purpose for things. I may not always understand it at the time, but His ways really are greater than mine.

 

He created me exactly the way I am for a purpose. Maybe there is a reason for my madness. Maybe there is a reason that I can't let things go until I am satisfied and have peace about the answer. It has certainly served me well in being diagnosed and finding treatments for my own chronic conditions, some of which are fairly rare and often take years to be correctly identified. Each person is uniquely created by God for specific purposes. Maybe it's time I just accept my quirks as part of God's perfect design and allow Him to work through it.

 

Billy's VA GI Surgeon called me today. To avoid confusion, I will call him Dr. A. He said "This whole Neuroendocrine Tumor thing is getting blown way out of proportion." He told me that it was not Cancer (although the resident doctor originally told us it was) and that I was overreacting. I explained that I had spoken with several offices that specialized in Neuroendocrine Tumors and was told that it was considered Carcinoid Cancer and would require aggressive testing and monitoring even after it was removed because they often reoccur anywhere in the body. He said it was not going to come back and it was not Cancer. He refused to do any of the standard gastric carcinoid labs and scans that one of the specialist required. He said they were unnecessary and he would not order them or refer us to a NETs expert outside the VA. He wouldn't even refer us to an oncologist at the VA! He told me that he was an expert in Gastrointestinal Diseases and that this little tiny thing was insignificant and all of the things I was concerned about were not relevant and the further testing was unnecessary. He said Billy has Crohn's Disease and that was what we needed to focus on. I told him that I had corresponded with several people who had a NET like this one who were told that it was nothing to worry about and about 5 years later had Cancer in their liver and multiple other areas. I shared storied of how one lady was told she had Crohn's Disease for 5 years until tumors showed up everywhere and she died a few years later. He was not interested in anything I had to say. I asked him why multiple offices that specialize specifically in treating NETs would tell me that this is Cancer if he was so certain it isn't. He said "I guess they just want the business and are being cautious." My first thought was that I prefer cautious to careless. Since he will be the one removing the NET on May 5th, I feel like it is best to hold off on filing any additional requests with the VA that might irritate him further. I want him to have steady hands and complete focus when he removes it and have no desire to try to reason with him any longer. I know he already thinks I am crazy and I am sure he will be talking about me for the rest of the day or longer. That is fine. I can handle that. What I can't handle, is not feeling like we have done everything possible to make sure that IF he needs treatment, he gets it.

 

This is my husband's life. I want so badly to just believe Dr. A and forget this nightmare ever happened. That is what several others I talked to did, and now their Cancer is in advanced stages. The family and friends of those that have passed away are dedicating their life to raising awareness and sharing their stories so that others might seek answers from qualified experts and be able to live longer and better lives. I am sharing our journey, not just to keep everyone informed and ask for prayers, but because there may be somebody else out there who is just as overwhelmed as we are.

 

I have no doubt that God will work all of this out somehow. He never seems to show up early and let me know about His plan in advance, but He is always right on time.

 

 



 

As I was typing this, the phone rang. Guess who? The original resident Doctor that told us this was Cancer. I will call him Dr. M. I asked him again, do you consider this Cancer or not? He danced around the question and spent about 5 minutes telling me how what we called it was not as important as how it behaved and what we were going to do about it. I reminded him that he told us his opinion to begin with and it was obvious that he and the other doctor did not agree about what to call it. He said that Doctors sometimes had differing opinions about things but that he trusted the 25 years of GI experience the surgeon has. That being said, he agreed to do a few of the extra tests that we asked about. That is an answered prayer. They will be doing a couple of the labs we wanted as well as taking a better look at the area they believe to be Crohn's. There is a possibility that there could be small Carcinoids in that area giving the appearance of Crohn's Disease. Dr. M said that they would also take more samples to biopsy and look more thoroughly and specifically for carcinoids during the procedure. Dr. M obviously believes this is Cancer, but is not willing to go on record and contradict Dr. A. He did not deny that he said it to begin with. His main concern is that the tumor is completely removed on May 5th. He agreed that regular follow up was important. He said he would check on the Gallium 68 scan, but did not think that the VA had it available. He said due to the size of the tumor, the location, and the slow growth rate, he did not think that the gallium would show any metastasis at this point.

After researching all of this, I believe that he is probably right. However, I still believe in being cautious and don't want this dismissed as nothing when it could be life threatening if more tumors show up later. I have talked to too many people with nightmare stories about this Cancer because they listened to their Doctor when he or she told them it had been removed and was nothing to worry about.  

I don't care if the VA Doctors agree on what to call a Neuroendocrine Tumor. NETs specialists clearly believe that all of these carcinoids/NETs have potential to be highly malignant. They are hard to diagnose because they are often really small and not easily seen. They don't generally cause symptoms until the cancer is in advanced stages. To complicate matters more, some malignant NETs may look benign under a microscope. In the past, the tiny ones like what Billy has, were considered insignificant. In recent years, they have learned that even though these cancers are slow growing, it is important to carefully treat and monitor every NET patient. This is true even when the NET is localized and completely removed with surgery. Many times they recur years down the road. If the doctors are not actively looking for them (and sometimes when they are), they may miss them until the tumors grow larger or there are many smaller ones that can be detected through regular imaging.

Carcinoid Cancer and Neuroendocrine Tumors are extremely complicated. It appears that no case is ever the same. One of the nurses I spoke with said they call them "neuro" because they are smart and "endocrine" because they come from endocrine cells and can go throughout the body. I would imagine that the Doctors that have decided to specialize in this type of Cancer make my little OCD tendencies look silly. You would have to be extremely dedicated, detail oriented, and honestly very obsessive to ever wrap your mind around this stuff. I understand the basic concept, but this is WAY above my level of education or comprehension. The tumors can be slow growing and then without warning become highly aggressive. They can be localized and then spread to just about anywhere. They can be removed and may come back 6 months or 6 years later. Nobody knows how these cancers will behave. It depends on so many different things. Each patient is different. Each cancer is different. Each treatment and follow up plan must be customized.

The biggest mistake patients and doctors make in dealing with carcinoid cancer is underestimating the neuroendocrine tumor. Failing to recognize it's malignant potential, unpredictable behavior, and ability to go unnoticed for years can have deadly consequences. The lack of knowledge and understanding makes this cancer scary. It is also unnerving to know how often it is missed even with advanced scanning and tests.

There is a silver lining though. The good news is that like most cancers, if it is identified in the early stages and can be removed surgically, there is a chance that it won't return. If it does recur or spread to areas where surgery isn't possible, there are several effective treatment options. Each situation is different, and some people don't respond as well as others. However, there are quite a few cases of it being managed well for years, sometimes decades! Praise God for that! Because people are raising awareness and patients are learning to be their own advocate and seek the advice of experts, more patients are able to live longer and more active lives!

God has led us to the right information and doctors. He is opening doors and guiding our steps. He even opened the hearts of the VA Doctors. Dr. A completely refused any additional testing and made me feel like a complete idiot. Only a few hours later, Dr. M called and said he and Dr. A discussed it and they would like to take a second look and would be willing to do a few additional labs and biopsies. This is progress! Thank you, Lord!

Since the CT Scan was ok, I am beginning to feel more hopeful that this is a localized tumor. It will be removed on May 5th. If there are other small tumors that were not detected, then I am confident that they will be found and somehow God will make the appropriate treatments available if and when they are needed. We sent all of his records to specialists in Colorado and Louisiana. If Dr. Liu still agrees to see him after reviewing his entire medical file, we will make an appointment to go to Colorado. He treats much more serious and life threatening cases than what we are facing at this point. If Billy only has one and they remove it, he should not need any treatments. He will only need consistent follow up to catch any additional tumors that may arise in the future. If Dr. Liu is comfortable that it is not an active threat after it is removed, then he may just recommend a follow up plan that he or the VA can do. We will know more after they remove it on May 5th and we get the results from the pathology report from the biopsies they take then.

If you are interested in more in depth information on NETs, please click on this link for the Healing Net Foundation's website and download the NET Primer.

https://www.thehealingnet.org/healthcare-professional-resources

In the beginning of my quest for knowledge, many people asked me if my obsession with this was healthy. I understand why they may think that and I truly appreciate their concern. For many people, weeding through hundreds of hours of medical journals, research reports, and expert opinions may cause unneeded anxiety. I am weird. This process has actually helped me. Because of the way my mind works, I need to have every single detail I can get. The good, the bad, and the ugly. I need to know and understand what I am dealing with. After I have time to consider all of the information, I am able to make an educated and informed plan for the future. That comforts me and helps me to focus on dealing with solutions to the problem rather than allowing the unknown to drag me into "what if- worry mode".

A few people suggested that I just trust the Doctor and accept his opinion of it not being Cancer as good news. Since we got conflicting opinions from the doctors at the VA, I was not comfortable with trusting either of them blindly. We had no previous history with them. As we researched the NETs and realized it was rare, we felt that it was more important than ever to search diligently for answers. I believe that the VA Doctors are probably very good doctors and intend to provide the best treatment. However, some cases require further investigation by Doctors who specifically deal with the issue at hand. In our case, a rare neuroendocrine tumor. Doctors are human. They are capable of making mistakes.They work long hours and may miss something like NETs because it can appear so harmless. I think that a healthy understanding of your personal health issues and those of your immediate family are appropriate. I believe in being your own advocate and in seeking answers from experts when necessary.

The Bible talks about gleaning. God directed property owners to allow the orphans, widows, and less fortunate people to go behind them after their initial harvest and gather the leftovers. God always provides a way. What always stuck out to me was that he expected the needy people to work for what they got. He told the property owners to allow them to gather the leftovers. He did not expect that the property owners would gather it and just hand it to the people...

I feel like he leads us where we need to go, but He expects us to do the work. He prompted me to look for answers and information through my feelings of unrest.

Ruth 2:17

 

So Ruth gathered barley there all day, and when she beat out the grain that evening,

 it filled an entire basket.

 

 

Once I started diving into this stuff and trusting him to guide our steps, He gave me complete peace about whatever the future holds. It is ok to question things. It is alright to question people who are more educated than you. It is appropriate to be informed about medical conditions in order to make the best decisions for care and treatment.

Some patients are completely confident in their doctors opinion and ability no matter what they are facing. That is great. They may not have a desire to learn more about their condition. It may cause them more anxiety to know the research and technical details. That is ok too.

What matters is that each person has peace about the road ahead. God created all of us different for a reason. I think those unique qualities make us uniquely qualified to deal with whatever life throws at us, and to fulfill His purposes through it all.

We appreciate every single prayer, card, email, call, text, and words of encouragements. We are blessed to have so many thoughtful and concerned people in our lives.

Sometimes, I feel the closest connection to God when my life feels completely out of control. It is during those times that I truly understand my need for Him. I am so thankful for His constant presence in the chaos. My God is an Awesome God! If you don't know Him, I would love to share Him with you... just ask!

 

 

 

 

The Journey Continues

I might have good news…

I think?

I explained the conversation that the resident doctor had with Billy in my previous post. He had it on speaker phone, so I know exactly what the doctor said. When Billy specifically asked for confirmation that it was Cancer, he said almost word for word “technically, it is Cancer… but, it is small and we should be able to remove it during another endoscopy. If it is removed, it is not like the scary cancers where you need chemo and radiation.” Then, after we looked up Neuroendocrine Tumor Cancer and saw that it was rare, and in fact very scary… it got REAL really fast!

I still couldn’t access the pathology report online because they put a 14 day hold on it. However, I looked at his records again. I saw where they apparently mailed him a letter with the results of the upper and lower endoscopy. It showed the possible Crohn’s Disease. Then, it said there was a “mild abnormality” on the upper scope test. That is where they found the tumor. Wait! What? How could cancer be considered a mild abnormality? I continued to look through his records and saw where the resident doctor documented that he called and told Billy about the Neuroendocrine Tumor and told him he needed the CT which is scheduled for Friday. There was another note from him to an office assistant asking her to call and schedule a repeat EGD to remove the Neuroendocrine Tumor. They called and I scheduled that appointment for May 5^th. Then, I found an entry from the surgeon who sent the letter we haven’t received yet, showing only the possibility of Crohn’s and the mild abnormality. His note said “as expected biopsies unhelpful.” Seriously? How can a biopsy be unhelpful if the resident doctor said it was Cancer? How can Cancer be considered a mild abnormality?

Hopeful and confused, I sent a message to the surgeon explaining the situation and asked for clarification. I know 100%, without a doubt, that the resident confirmed that it was Cancer. The surgeon’s response message said that it was not Cancer, but was a Neuroendocrine Tumor/ Carcinoid, and most were very benign. He insisted that the resident didn’t need to be as aggressive with his follow up plans as he was and we could have waited a few months before scheduling the tumor removal. That made me wonder why we would even need to have it removed within a few months if it were harmless. He said that they may have even gotten the entire tumor last time. (This is also in conflict with the resident who said they only removed a sample fragment for the biopsy) The surgeon ended his note by saying that the CT would help them evaluate the Crohn’s Disease and will also give them more information about the tumor in his stomach. He included the actual pathology report. (Finally, thank goodness)

I have been looking at the pathology report and things are becoming as clear as mud. It says the stomach specimens taken were 4-5mm (the resident said the NET was about 1cm, so clearly the whole thing was not removed last time) The report diagnosis is a well-differentiated neuroendocrine tumor. It does NOT say that it is a malignant tumor.

When I looked online, I couldn't make sense of it. Looking at the report, and reading the surgeons report, I wasn't convinced that it was Cancer. On the other hand, IF the surgeon knows it is definitely not cancer, then why does he need the CT to get more information about the tumor? My original thought was  that maybe it has precancerous cells or potential for malignancy. It showed the ki-67 index was less than 1%. I didn’t know what that was. I looked it up. Ki-67 is a protein in cells that increases as they prepare to divide into new cells. A staining process can measure the percentage of tumor cells that are positive for Ki-67. The more positive cells there are, the more quickly they are dividing and forming new cells. The higher the percent Ki-67, the greater the risk of an adverse outcome. (https://www.questdiagnostics.com/testcenter/testguide.action?dc=TS_Ki-67) His score is really low, which is awesome if I understand things correctly. When I look at some sites and studies online, it appears that it could possibly be a very low grade, slow growing cancer in the early stages… which is still great news! I am not a Doctor and the NET Cancers are really confusing. I don’t know what to make of it. The surgeon said the resident was more aggressive in the follow up planning than he would have been, and we could have waited a little while to schedule to have the tumor removed, but he didn’t suggest we cancel the upcoming appointment or move it to a later date.

In reading about the pathology, I don’t believe they received enough data to diagnose accurately. If they did, all of the information was not listed in report.

(http://www.carcinoid.com/health-care-professional/neuroendocrine-tumors-classification.jsp?usertrack.filter_applied=true&NovaId=4029462200591898377)

Did I mention that I over think and over analyze everything? This time is even more serious since it is my husband’s life at stake here! I spent hours studying the most overwhelming and confusing information I have ever tried to understand. My conclusion is that doctors do not all agree on what neuroendocrine tumors are malignant. Apparently, diagnosis can be quite difficult. According to The American Cancer Society, “It might not be possible to tell a benign tumor from a cancer when it is localized because the cells can look the same under the microscope. Any tumor that spreads, though, is a cancer (by definition).”

One publication on the National Center for Biotechnology Information website concludes that tumors of the gastrointestinal tract are varied and can be a diagnostic challenge. It said that the distinction between benign and malignant carcinoid is based on the presence or absence of metastasis. In our case, we have no idea if there are other tumors. The abdominal CT will show areas that they couldn’t see with the scope. We are praying for no other tumors anywhere!

In contrast to what his surgeon said, Mayo Clinic says that “Carcinoid tumors are a type of slow-growing cancer that can arise in several places throughout your body. Carcinoid tumors, which are one subset of tumors called neuroendocrine tumors, usually begin in the digestive tract (stomach, appendix, small intestine, colon, rectum) or in the lungs.”  http://www.mayoclinic.org/diseases-conditions/carcinoid-tumors/home/ovc-20164792

I could tell you about a hundred different sites and experts who have conflicting opinions about this particular type of tumor. Obviously, the two doctors that did the scope procedure and read the pathology report did not come to the same conclusion either. According to one of his doctors and many different other sources, he has a cancerous neuroendocrine tumor. However, the other doctor disagrees and there are many other sources that say that this is not yet considered cancer. Who is correct? I have no idea!

Here is what I do know. This Cancer is rare and can be scary. It is usually slow growing, but isn’t often found until it has spread. Because of that, I think the prognosis and survival rates may not reflect the outlook of cases caught early on. My understanding is that malignant and benign NETs can look the same under a microscope. Therefore, until it spreads some Doctors won’t say for sure that it is/was Cancer. By then, it is too late to do anything but treat it. Other Doctors and medical institutions maintain that these carcinoid neuroendocrine tumors are in fact Cancer, but that most are slow growing. They do have the potential to spread to organs and other parts of the body. In advanced stages, they can cause Carcinoid Syndrome and other life threatening complications that are not cancer related.

http://www.mayoclinic.org/diseases-conditions/carcinoid-syndrome/basics/definition/con-20027127

The bottom line is that this is serious stuff. Experts may not agree on what to call this rare tumor at this stage in the diagnostic process. From all that I have read and after seeing the crazy confusing pathology report myself, I believe that he has a low grade, slow growing Cancer. I also believe that all of his other concerns from the inflammatory bowels issues and lab tests led him to do the scope procedures that he would not have been likely to do for another 10 years otherwise. Coincidence? I don’t believe in that. I know that God prompted us to pursue this further. If you know Billy personally, you know that he does not go to the Doctor, take medications, or even consider invasive testing. Yet, he knew something was wrong and needed to be done. I am praising God for that!

I don’t know what the CT Scan is going to show. I don’t know what they will find when they remove the tumor. I do know that God has been right here with us the whole time and He isn’t ever going to leave us. I am choosing to believe that this tumor can be removed, that there are no others anywhere in his body, and that nobody will ever say the “C” word to him again.

This is not something that we will ever be able to forget or walk away from. We will have to monitor it for the rest of his life. The National Comprehensive Cancer Network recommends that all patients with carcinoid tumors be re-evaluated 3 to 12 months for at least 7 years.

It has been an emotional rollercoaster for sure. How can there be so many highs and lows in only a few short days (feels like the longest days of my life)? We still don’t know all of the details of what is going on. Obviously, there are conflicting expert opinions surrounding this whole issue. It may be Cancer. It might not be. If it isn’t Cancer, it could become Cancer. There are lots of “what ifs” right now. I am the what if queen, but these questions aren’t coming from me. I know I am not an expert. Science and math were my least favorite subjects in school. The terms are technical, and my mind doesn’t easily comprehend those types of things. However, it isn’t just my lack of knowledge or understanding because the medical community seems to be confused as well.

We are nowhere near the end of this journey. If the CT scan doesn’t show any other areas of concern, and they are able to remove the tumor with no issues, there will still be scans, tests, procedures, and likely follow ups and monitoring for years to come.

I don’t have answers to my questions. I don’t know if there are other tumors. I don’t know exactly what is going on. The unknown is scary. Cancer is scary. Rare tumors that create life threatening problems are scary. Do you know what is worse than that? Not having hope is worse. Not having God to comfort us and give us peace is terrifying. I experienced two days of torment because I let my fears control me. It felt like Hell. I don’t mean that figuratively. I believe that Hell is a literal place. I can’t imagine eternal pain like I felt. Yet, I am sure it will worse than the absolute worst days of my life. Separation from God alone would be unimaginable. I am thankful that I know that I will spend eternity in Heaven because of my faith in Christ. I know some people think my beliefs are just some fantasy that is fine for me, but not based on evidence. I don’t know much, but I know He is real. I have never been as sure of anything as I am of that. If I didn’t believe it, I just don’t think I could survive this world.

Nothing has really changed. The tumor is still there and threatening. Experts disagree about when to consider these types of tumors malignant. When it spreads, they agree that it is Cancer. When it is localized, some say it is and some say it isn’t. Nobody disagrees that it needs to be removed and that further tests are required. So, we will wait and pray. We are still praying for the exact same thing as before… that the CT Scan will not show any other tumors, that it can be removed completely, and that he will never have another one. Our God is able!!

2 Corinthians 9:8

And God will generously provide all you need. Then you will always have everything you need and plenty left over to share with others.

 We can feel your prayers. There are just no words to express how comforting it is to know that so many people are asking God to bring healing and comfort. We have gotten messages and calls filled with love and encouragement. We feel so blessed.

It may be a long road. I pray it will be, because long roads mean lots of travel time! I will gladly be along for every bump, twist, turn, and detour along the way.

None of us can see the road ahead. All we can do is trust God to help us navigate and just enjoy the journey.

Even If- MercyMe: Click to listen

It just got real.

 

It just got real.

Even as I sit here trying to find the words, they just won't come.  

How do I describe what I have been feeling the last few days? My thoughts are all over the place.  

For two days, I wandered aimlessly around our house. I would start to do something, and then realize that long spans of time had passed and I was still in the same place. I hadn't accomplished anything. I had just been frozen in time, paralyzed by fear. I tried to think positive. I tried to pray. There was no relief for what I was feeling. I was on emotional overload. Completely overwhelmed and unable to make sense of anything that was happening. 

My husband, Bill, has been having some minor health issues and has had a few abnormal lab tests. He is young, active, works hard, and has no history of illness. He doesn't take prescription medication. He rarely even takes Advil. He is the opposite of me. My list of health problems grows longer every year. I keep a whole basket of prescription medications and supplements in my nightstand.  

We went to his primary care Doctor and explained his ongoing concerns and symptoms. She really didn't want to refer him to another doctor or do any other testing. However, when his liver tests were slightly elevated and his symptoms hadn't gone away, we insisted that there was something going on. We weren't comfortable waiting another 3-6 months to recheck his labs. I was able to persuade his Doctor to refer him to the GI Clinic. We saw a Nurse Practitioner. She didn't feel that there was anything significant going on, but she did order more labs and further testing. After a scope procedure, they told us that they believed that he may have Crohn's Disease. They also said that they had removed several polyps and had taken a sample from a small mound and they would contact us with the biopsy results. 

Last Friday, that call came. They got the pathology report back and they believe he has an inflammatory bowel disease, likely Crohn's. We knew that was a possibility, but we weren't expecting what came next. The fragment that they removed from the mound was a malignant Neuroendocrine Tumor. Did you get that? Malignant means Cancer. It took my breath. I couldn't think. My hands were writing as he spoke, but my mind was not processing the information. We were told he needed a CT scan, surgery to remove it, and a follow up appointment. I wrote it all down. It's all there, scribbled in illegible handwriting. It says Neuroendocrine Tumor. Cancer. CT. Surgery. Follow Up. I heard every word they said. 

We were out in the camper when the call came. Billy has been fixing it up and preparing for our next road trip this summer. Ya'll, I felt like I had been punched and then held under water. I could not catch my breath and my stomach physically hurt. I felt like there was a vise around my heart. Do you know what my husband did? He told them thank you for calling and hung up the phone. He smiled and told me everything was going to be ok, and he just kept right on working. I mean he never missed a beat. He didn't hesitate. He didn't look up Neuroendocrine Tumor. He didn't sit down to catch his breath. He turned the radio back up and went right back to doing what he was doing before the call came, before my world changed forever.

 I guess I need to share a little background. I don't allow myself to get really close to people. I call it self-preservation. My inner circle is small, and getting smaller all the time. My Grandmother was the first person that I was closed to that passed away. It was traumatic for me at the time. A few years later, my Mom died from Cancer. She and my husband were my closest friends. Losing her was the hardest thing, I had ever gone through. Several years later, I lost my friend Wendy to Cancer too. I hate Cancer. Hate isn't really a strong enough word.  

What is your greatest fear? I don't care for spiders and I don't do heights. However, my deepest fear is losing the people I love. Ever since Mama died, I have had pretty severe anxiety and irrational fears about losing my husband. I wake up at night and make sure he is breathing. We have cameras installed at his auto repair shop that I can access anytime. I look at them often, just to make sure he is ok. Just to give you a little insight into my crazy obsessive logic... I don't like it when he even goes to town without me. I make him text me when he gets there and when he is on his way home. No, I am not the controlling wife that worries he is out doing things he shouldn't. It's just that he has had several close calls in the past. I have shared a few incidents in previous blog posts. Anyway, no matter how bad I feel, if I am able to go with him wherever he goes, I will. My reasoning is simple. If he gets in an accident and dies, I want to go with him. I don't want to live one day without him. I have prayed that God will allow me to go first. I know that he is emotionally stronger than I am and he would be ok. So, I figured God understood my plans and would allow me to have my way. 

When Cancer ended up in the same sentence as the love of my life, my whole world started crashing in around me. Have ya'll seen this Grumpy Cat picture with the word "NO" in big bold letters?

That is how I felt. NO! Absolutely, not. This is not happening. We are NOT doing this. If anybody was going to have Cancer, it should be me. I have lots of health issues, including autoimmune problems. My Mom died of Cancer when she was only 55. I hurt and am exhausted all the time. I wouldn't be surprised if I was diagnosed with Cancer. I could handle it. Everybody has to go sometime, right? I mean, I know where I am going. Heaven sure beats where we are now. So, I think if it were me I would handle it fairly well. I'm not saying I would be glad I had Cancer. It is an awful disease and not a fun way to go. The dying process can be scary and painful. If I had my choice, I would close my eyes one night and wake up in Heaven. No worrying about any of the unknown things that come with a life threatening diagnosis. I would just open my eyes in Paradise. What a blessing for those that arrive at the pearly gates that way. Sign me up! My point is, I would gladly take his place. I have no desire to outlive him. None.  

So, all afternoon Friday I just sat there and cried. Then I cried some more. That evening, I started researching it. WHY do I do that? Never mind, I know the answer to that. It's is just me. I have never been like the ostrich. I can’t just put my head in the sand and pretend everything is ok. I over think and analyze every situation to try to find the best possible solution and outcome. That is just how I am built. I need all of the information. The good and the bad. Knowledge is power. So, I read informational websites, research reports, case studies, life expectancies, treatments, and anything else I could find. Then, I cried some more. 

Neuroendocrine Tumors that are malignant are called NETS for short. NETS doesn’t sound that terrifying, does it? How bad could it be?

Leave it to my once in a lifetime love to have a rare cancer. He always has to be special and unique. This time is no different, as much as I wish I wish it was. 

I told a few people what was going on. I prayed. I kept reminding myself of the truth of God's word. I know He is in control. I know He heals. I know He gives us strength. I know I shouldn't be afraid. I know He is with me. I know prayer is powerful. I know I have to have faith. I know I have to trust Him. I KNOW ALL OF THAT. I believe every word of it. I have experienced Him personally and I trust Him.

Here's the thing... God has the power to miraculously heal. I have seen Him do it. I don't doubt His ability. It's just that I also know that sometimes His will is not what I want. It has to be that way because He can see the whole picture and knows what is best. God isn't a fairy godmother or a genie in a bottle that grants our every wish. He is the all-knowing creator of the universe. He is the beginning and the end. He loves me infinitely and unconditionally, but He does not always give me my way. He gives and he takes away. That is the reality. The impact of that truth sometimes hurts in a way that I can't even describe to you.  

So, that night I prayed. I barely slept. I woke up about every hour. I pleaded with God. Some incomprehensible begging that consisted of only a handful of words. I couldn't form a sentence. I could barely complete a thought. My prayers were something like... please make this go away, heal him, save him, let the pathology report be wrong, or let it be me instead... I thought you knew it had to be me first... I thought we agreed... I thought you understood... please don't make us go through this... please, God... please not him... me I can handle... just please NOT him... not my husband, the only person on Earth who knows everything about me and loves me anyway, the only man I can ever imagine sharing this life with, the one my heart loves, the one my soul plans to spend eternity with, the one who makes every day worth waking up for... please don't do this to him... don't do this to ME! Yep, that about sums up my prayer. I'm not proud of it... but, that is what pouring my heart out to God sounded like.

I also prayed for His peace that I can never quite understand. I have had it many times over the years. I wish that I could keep it and never let it slip away. It can only come from God, and I really needed it then. I wasn’t sure I could face another agonizing day in the state I was in. I was determined that Saturday would be a better day. 

Saturday morning was beautiful. The sun was out. The temperature was perfect. I woke up giving myself an internal pep talk about not wasting the day crying about things I had no control over, staying positive and not worrying about the what ifs, trusting God to give us everything we need, and all of that other uplifting and inspirational stuff. I had the regular scripture verses replaying in my mind and encouraging song lyrics going through my head. I may have even plastered a smile on my face. Fake it til you make it! 

That lasted all of about 5 minutes. I will spare you the details, but let me just say that my behavior did not reflect the level of spiritual maturity I thought I had reached. I even said out loud what I was thinking. “I know He can heal. I know He is with us. I know the verses. I trust Him. I know He can handle it. I do have faith. I just DO NOT want to do this. Not now. Not ever.”

Do you have kids? Have you ever seen a toddler tantrum? I don't mean just pitching a fit. I mean absolute meltdown, no getting through to them, arms crossed, foot stomping, crying until they can't breathe and their clothes are soaked with tears and snot. Yep, that was me. Ugly Crying doesn't even begin to cover it. It was beyond ridiculous, but that is exactly what happened.

We got groceries and Billy worked on the camper Saturday afternoon. Did I mention that he wanted to get groceries? Really? Groceries? Something so normal and ordinary in the middle of my come apart? I don’t know if I saw anybody I knew, or if I spoke to anyone. I don’t know if I selected any food or put any items in the cart. I vaguely remember checking out. It is all a blur. There we were, shopping… as if all was right in the world. Can you even imagine? I couldn’t.

My husband is an amazing man. He is easy going, fun, and always an optimist. He is perfect for me. I think we balance each other well. In the middle of my psychotic episodes, he can always find a way to keep me grounded. Grocery shopping in the middle of my nervous breakdown should clarify just how well he is able to rein in my crazy. He definitely helps me avoid the whole padded room and straight jacket ordeal.

As I prayed Saturday night, I did ask God for peace. I also asked Him to take away this Cancer forever. Then, I thanked Him. I told him how grateful I am for the blessings He has allowed in my life. He has given me so much more than I will ever deserve. I praised Him for my marriage. Everything about the way we started out was wrong, but God has the supernatural ability to make something so beautiful out of even our biggest mess. I gave Him all the glory for teaching us to love each other well. My situation hadn't changed, but my prayers did. That is how God works. He changes our hearts and allows us to see things from a different perspective.

If you have ever watched a medical show, I am sure you have seen someone in a trauma unit or emergency room crying out in pain. A nurse rushes in and gives them IV medication. Then, you actually witness their body relax as the intensity weakens and they are able to breathe normally again. That is how I felt Sunday morning. Sweet peace. Thank you, Jesus! There it was… just like I had prayed for… relief.

We got up and ready for church. It was just like any other Sunday, maybe even better. I saw him. I mean I really saw him. I noticed everything about him that I love. So many times, I take him for granted. That morning, I saw him with fresh eyes, and my heart was full. We laughed, cried, and held each other close as we danced in our bedroom that morning. We went to church, and at the end of the service we prayed. We laid it all at the feet of Jesus. We had to, because it is just too much for us to carry.

Easter is coming, and I have been thinking about how the disciples must have felt. They thought Jesus was going to set up His earthly kingdom then. They planned to live in the palace and enjoy all of the perks of royalty. They knew who He was. They had seen His miracles. He even told them what was coming. They knew He was going to be crucified. Just like me, they shook their head and said absolutely not. They didn’t understand. It wasn’t their plan. It was certainly not the path they would have chosen. When he died on that cross, they had to be terrified. They must have felt so alone. I bet they were confused and grieving deeply. For a few days, I bet they were frozen with fear just like I had been. On the third day, He rose! He was alive! Their peace returned. Their purpose was clear. Their hope was restored.

I spent a few days in fear and without direction, but He is alive and my peace has returned.

I know that people mean well and they want to offer encouragement and hope. Lots of people act like this isn’t a big deal and assure me that he is going to be just fine. The reality is, those are just empty words that don’t mean anything… and this is a very big deal to me. I don’t know what tomorrow holds for any of us. Sometimes, this world will shred your heart into tiny pieces. People lose children, parents, spouses, and friends daily. Nobody can guarantee your next breath. Only God knows what is coming next, but I can guarantee that He will provide whatever is needed when the time is right.

God is still God. I wasn’t there when he created the world or hung the stars in the sky. I wasn’t there when he allowed Jesus to suffer and die so that I might live. I wasn’t there when Jesus was resurrected. I don’t know exactly how his friends and family felt to see such a marvelous sight. What I do know, is that even when I’m selfish and demanding, God loves me. When I am afraid, he comforts me. When I am weak, He gives me strength. When I feel alone, He holds me tight. I know He is there. I know His peace in the middle of the pain is a miracle. I don’t always like His plan, but I do trust Him.

I am only afraid to lose Billy because I love him with everything I have. I am all in. The pain and grief would be unimaginable. The only way to protect the heart against losing a love like ours, is to never have had one. That would be so much worse. Many people don’t ever have the opportunity to connect with someone on the level that we have. It is a blessing. To experience a deep and meaningful relationship requires you to open your heart and allow someone in. True love is always worth the sacrifice.  

I am praying for God to destroy every cancer cell in His body. I have no doubt that He is able to do that. Nothing is impossible for God.

I am sure there will be times that the tears still come. I am human and more emotional than most. There will also be lots of love and laughter. Hopefully, for many years to come.

Billy will go to work tomorrow, just like he did today. So ordinary and normal... right in the middle of the storm. His mind doesn't work like mine does... but, I think maybe he just "gets it" better than I do. What is normal anyway? This is normal. This is life. Hills and valleys. Always changing. We are all dealing with something. All we can do is hold on to God, who is always the same, and stay anchored to His promises. We have no control over most things in life. Worrying won't change that. We can choose to waste time on what ifs... or we can honor the gift of another day and truly learn to live.

 

 

 

In the sunshine and the rain… whatever comes, I’ll praise His name

Got Grace? Give Grace!

I am starting to believe that we all have multiple personalities. It sounds silly, but I'm not joking. I am an educated, rational, and self confident person. I also have an ever changing drastic range of emotions that leave me feeling unqualified, insecure, needy, and all kinds of crazy! It is a lonely feeling that creates anxiety and even makes me feel hopeless at times. 

 

The only way I get through it is to remember that no matter what I am going through, I am never alone because God said He would never leave me. No matter how insecure or rejected I feel when people don't appreciate or love me the way I want them to, God loves me and says I am worthy, valuable, and precious to Him. No matter how much I mess up, or how useless I feel, He says I have a purpose greater than myself. 

 

He knows me. The parts of me that I keep from the world. The ugly side that I even try to hide from myself. He sees it all. He sees me. I mean he really sees me. The good and the bad. The logical and the crazy. The sacrifice and selfishness. He sees the mess. Yet, He loves me anyway.

Have you ever tried to reason with an unreasonable person? Or tried to speak truth to someone who has their mind set on believing a lie? Have you ever spent every ounce of energy and all available resources to help someone, only to watch them make the same poor choices and end up right back in the same situation they were in? I have done it way too many times. It felt like all of my efforts were wasted. I felt used, manipulated, and unappreciated. My feelings were hurt. My pride was bruised. My energy was depleted. I was angry. It made me want to stop trying, give up, and walk away and never look back. I have dealt with those difficult and ungrateful people who refuse to face reality and make responsible decisions. It is hard to admit, but I have also been that wretched person myself. 

I have been both the encourager and the destroyer. I've helped many people and hurt quite a few others. I've been the voice of reason and the one who can't make sense of anything. I've sacrificed unselfishly and I've taken advantage of others. I have created order and chaos. I have followed the truth and lived the lies. I have been a cherished friend and the hated enemy. I am my greatest advocate and supporter, but I am also my biggest critic. 

We are highly emotional beings and our thoughts and behaviors are easily influenced by people and circumstances. I get a little self righteous when I feel like I have been wronged. I get absolutely irate when someone I care about has been hurt. I crave justice and want retribution. 

Then, I remember that Justice is fair. Fair means that things are equal. Fair doesn't have favorites. It applies to everyone, even me. That means that there are consequences for the actions of those sides of me that I would like to forget. That's where Grace comes in. Grace is when God gives me His love and forgiveness even though I don't deserve it.

 

I'm grateful for His amazing grace. I am so thankful that God doesn't see me the way I see myself. He doesn't give up on me when I let Him down. He has never thrown a selfish tantrum like I have done in the past. His love is always pure. He is the anchor that keeps me from drifting into dangerous waters. 

 

Hebrews 6:19

 

We have this hope as an anchor for our lives, safe and secure.

His love and grace changes everything. He shines light to reveal His truth. He created me for more than this life. His purpose for me is bigger than my desires. He is always working in me. His power within me can change my thoughts, feelings, and actions if I let it. He understands my deepest pain and he binds my wounds. He knows the worst parts of me and forgives it all. I have chosen my way and rejected His, yet His love never fails me. 

He has blessed His children with many gifts. I am convinced that the best way we can glorify Him is by sharing them with others. We can forgive ourselves and others because He has forgiven us. We can offer comfort and encouragement because He has walked with us through hard times. We are able to show love to others even when they don't love us back. We can give others a little Grace when we remember the many sides of us that don't deserve God's favor. God's greatest gift to us is His love. It's no surprise that His greatest command is for us to return His love and to share it with others. 

I pray to have a heart like His and to love others unconditionally. I want to see the best, and forgive the worst in others and myself.

Some days it's easy to be kind, compassionate, and loving. There are also days when I fail and fall short. I am human and make mistakes. That is why I need His Grace. Nobody else is perfect either. That's why they need it too.

  
 

Ephesians 2:8-9

 

For you are saved by grace through faith, and this is not from yourselves; it is God’s gift—

not from works, so that no one can boast.

Grace is undeserved favor.

Nobody is worthy.

Nobody can earn it.

It is given freely because of His great love.

 

That's what makes it so amazing! 

 

 

 

 

 

 

Click the link to enjoy the video.

 

Amazing Grace, My Chains Are Gone (Chris Tomlin)