Life Update

It has been a while since I shared an update. To be honest, there are too many things to even write about, but I will share a few.  The last year has been one of the hardest and most stressful times of my life. 

Our Yorkie, Madison, passed away in March 2023. Mama always wanted a Yorkie. In 2007, she got Madison at 6 weeks old. She called her my sister. They adored each other. When Mama died in June 2008, Madison came to live with us. She was 15 and had a wonderful life. There are no words to fully explain the bond we had with her or the pain of saying goodbye. She was special and one of a kind. There will never be another Madison. We still miss her every single day. 

There has never been a time in my life that I didn’t have an animal to love. I don’t like it and I doubt I will ever get used to it. But, neither of us think our hearts can handle another loss like that. 

On May 18, 2023, my Dad passed away from heart failure. He had been struggling and was recovering from a pace maker upgrade. While we knew how serious his condition was, we were not expecting him to die. It was a bit of a shock. Dad was career military and had a strong personality and powerful presence. There is a part of me that truly thought he would outlive me or somehow find a way to avoid death altogether. It sounds ridiculous, but it’s true. 

Unfortunately, unless Jesus returns first, none of us are getting out of here alive. That is why it’s so important to have a relationship with God so that you know you will spend eternity with him. Nobody is guaranteed their next breath! The older I get, the more clear that reality becomes! Just today.. A car cut me off on the interstate. I nearly overcorrected and wrecked. Thankfully, I didn’t and we made it home safely. You just never know what the next moment holds. 

I am the Executrix of Dads estate. He was a complicated person and his will/final wishes definitely reflect that and I am still working on sorting it all out. There are about 20 beneficiaries and property in 3 states. It has been emotionally and physically exhausting and overwhelming. But, we are slowly making progress.

Many of you have asked for an update on Billys health situation. He was accepted as a patient with the Undiagnosed Diseases Network (UDN) to try to find the cause of his unexplained “episodes” of hypertension, anxiety, and feelings of impending doom. Several specialist from across the country worked on his case. They did whole genome sequencing to try to identify a genetic cause. At first, the genetic testing didn’t really explain anything. However, considering his symptoms and all of the previous testing, they still believed he had a pheochromocytoma. The diagnostic imaging was inconclusive. It showed increased uptake and thickening on his left adrenal gland, but didn’t reveal a typical growth or tumor that could be seen and measured. Pheochromocytomas and other Neuroendocrine tumors can be present on a cellular level and may be “flat” rather than protruding. That often makes diagnosis difficult. The team of doctors felt that he should continue with medications to control symptoms and do periodic monitoring for a pheo. 

Months later, they contacted him and said that one of his genetic variants has since been linked to pheochromocytoma. Now, they believe there is a high probability of a Pheo. However, he also has another genetic mutation that effects tumor suppression… meaning if they remove a tumor/adrenal gland, it is more likely that he could have a tumor on the other adrenal gland or somewhere else. They don’t want to do surgery unless it gets worse and/or they can pinpoint the exact location of the tumor with certainty. Until then, they will continue to treat him like he has an inoperable pheo- with meds only. He has a webpage with the UDN that explains his case. Hers is the link for those that are interested. Just click on Participant 220 below.

Participant 220

He is still dealing with back/nerve pain, stomach problems, and several other issues. All of his conditions are chronic and are being managed as well as possible. He had his yearly endoscopy today to monitor things and locate and remove any Neuroendocrine tumors in his stomach. They removed polyps and took several random biopsies. Everything went fine. The Pathology report will be available in a few weeks. 

There are a few other life events that I may share later when I have time to put it all into words. I won’t overwhelm you with anything else right now.

Life has been beyond crazy this last year. Most of the time, we don’t even know what day it is! It seems there is always something unexpected that has to be handled. Thankfully, none of this was a surprise to God. He knew what was coming and had a plan to get us through it. Which reminds me of a song… Nothing catches Jesus by surprise by John Michael Montgomery. Give it a listen😊

https://youtu.be/ifcx1LCW2QE?si=rTzhSwl_TkY2P49h

God has continuously provided a way forward and worked out every detail along the way. I have no doubt that He will continue to take care of us. I can’t imagine facing the storms of this crazy life without His unwavering love, protection, and provision. We may not know what is waiting up ahead, but He does. I have no control over most things in life, but He does. I don’t have to know all of the answers. I just have to know the one that does. That is so comforting to me. I hope it will be a comfort to you as well. We all walk through the darkness at times, but He is with us so we don’t have to walk alone. 

I hope that whatever you are facing today, you will allow His light and love to illuminate the darkness, erase the shadows, and lift your spirits. ❤️

Still Searching…

If you have been following our quest for a diagnosis, you know that Billy was accepted as a patient with the Undiagnosed Diseases Network (UDN) earlier this year. We are so thankful for the opportunity he has been given to participate in their program. We are hopeful that their team of doctors and researchers can uncover the  cause of the debilitating episodes that have plagued his life for the last several years. 

Over the summer, he and his parents had genetic testing and counseling. Preliminary results revealed a variant in the KIF1B gene. Previously this variant was one of “unknown significance”. However, recent research has shown that it may be one of the most common mutations associated with pheochromocytoma and paraganglioma tumors. Click here to read more:

https://erc.bioscientifica.com/view/journals/erc/24/8/ERC-17-0061.xml

Last week a team of UDN Doctors from around the country reviewed and collaborated on his case.

Today, he had his first appointment with a few of the UDN Doctors at Vanderbilt. They spent hours with him documenting the details of his case and family history. They did a physical exam and ordered more labs and testing. 

After going over his extensive medical file and genetic discoveries, it sounds like they still believe a pheochromocytoma is a likely cause for his issues, despite previous testing being inconclusive. 

The last thing the Dr. said before leaving the room was “I believe you have a pheochromocytoma. Let’s find it and get it out!”

The immediate plan is to return to the lab Friday morning to complete the ordered tests. It will likely take several weeks for all the results to come back. They will contact us after reviewing them and we will discuss next steps.

As always, we appreciate your concern and continued prayers.

Jeremiah 42:3

Pray that the Lord your God will show us what to do and where to go.

He’s IN with the UDN

Just wanted to share an update on Billy’s ongoing health issues. I know it’s been awhile since I posted. Honestly, it’s hard to even know what to say when we still don’t have the answers we desperately need. 

He has several chronic conditions that are being managed fairly well. Unfortunately, he still isn’t able to work. He continues to deal with sporadic episodes that are scary, dangerous, and cause more problems than I can even put into words. He is on multiple medications to help control the blood pressure spikes that come with these weird events. Thankfully, they usually keep his pressure from staying elevated too long. That helps us avoid constant visits to the emergency room! 

He still experiences many often debilitating daily symptoms. Thankfully, he has learned to handle them better over the last few years. Isn’t it crazy what we are able to learn to live with and accept as our “new normal”? 

God has given all of us the miraculous ability to adapt to unimaginable circumstances. With His help, we also have the strength to endure and overcome anything! Can I get an Amen?!

For us, the hardest part of this ordeal is not knowing what is causing these life altering episodes. They make him feel like he is literally going to die when they happen. It’s terrifying and mind boggling. 

His Endocrinologist, Dr. Powers, has been a blessing. He has made all of the relevant referrals and ordered every test imaginable in an effort to find answers. Test results have been inconclusive. It has been beyond frustrating.

Last year, Dr. Powers told us about the Undiagnosed Diseases Network (UDN). There are only a few clinics in the U.S. One of them is at Vanderbilt in Nashville. The program is part of the National Institute of Health (NIH). Many different doctors and specialists across the country are involved. Their goal is to evaluate the patient and hopefully discover the elusive cause of undiagnosed medical problems. They review the medical records and history. Further testing is done as needed. They discuss everything as a group and hopefully find answers.

We were running out of options and ideas about what to do next. Dr. Powers suggested he apply to be a UDN participant. He told us not to get our hopes up because a panel of doctors would have to evaluate his records, discuss his case, and determine if he was a good fit for the program. They receive thousands of applications each year. They are only able to select a certain number at each clinic based on funding from a yearly grant. We filled out the application, sent in a recommendation letter from Dr. Powers, and forwarded all of his medical records and other items they requested. We prayed as we waited for their decision.

Praise God! for answering our pleas for help! He was accepted as a participant! They said he was the last patient accepted at the Vanderbilt Clinic under the current grant. We know that there is still no guarantee that we will get answers, but we have renewed hope! 

Part of the process is genetic testing for him and his parents. We are waiting on lab kits to get that started. We were told that getting the interpretation of results could take about 6 months. 

Understanding of gene involvement in disease is evolving every day. That is great because even if they don’t find concrete answers now, they may later. As genetic research expands knowledge of how certain variants effect health, they may discover the cause of his problems in the future. If that happens, since he is in the program, they will contact him. Even if it’s years from now! Medical science is changing and expanding daily. We are optimistic that this will finally provide some answers and help.

God continues to open doors and provide for our every need during these uncertain times. We are constantly humbled by His love. 

We are so thankful for this opportunity. We know that prayers have gotten us to this point. Please join us in praying that we will finally find out what is wrong, and maybe even discover a way to fix it! 

If you would like more information on the Undiagnosed Diseases Network, check out their website. 

https://undiagnosed.hms.harvard.edu/

Isaiah 40:31
But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary, and they shall walk, and not faint. 

 

What if we stopped making excuses and started taking responsibility?

 

I think Satan must have a special forces unit that specifically sets out to destroy Christian families. The attacks start from day one,  but apparently they call in the big guns around 20-25 years of marriage. It breaks my heart to feel the pain in the words of my friends who have had their spouses walk away tearing  apart their families. I know multiple couples who are struggling, or are no longer together after having invested a lifetime in each other. 

We have struggled in our relationship too. Everyone has. Nothing is perfect. I have walked away from relationships in the past. I have made less than honorable decisions more than I care to admit. 

There are always lasting consequences for our selfish actions. At some point, we just have to draw a line and hold to promises we make and not allow ourselves to ever cross those predetermined boundaries. Once Billy and I decided to put God first in our lives, we committed to stay together... no matter what... for better or worse. 

We all get worn down sometimes and think about the "what ifs". But, what if we just did the right thing? It gets easier. Why give up when you are just about through the hardest part? Someday, the kids will grow up and move out and the finances will be easier to handle. Then you will have more freedom to rediscover each other and fall in love all over again. You can give in to your "midlife crisis" and the temptation to run away and start a new life. However, there are responsibilities no matter where you go. The new wears off of every situation. At the end of the day you will have lost the life you worked for and once treasured. It's never too late to try to make things right. If you are separated, considering divorce., or just going through a tough time in your relationship... Don't give in to the temptation to give up. If you do, you are going to miss the best parts of life! Live with purpose and passion. Love is worth fighting for. It's more than a feeling. Love is an action word. Just commit to do it, even on the days when you don't feel like it. 

I know this picture and caption may seem harsh to some, but as Christians, we need to hold each other accountable. We need to stop being so understanding and supportive of divorce when there are no biblical reasons for it. We are all in this battle. We need to stand along side our friends and family in their struggles. We should fight with them and for them. We all need to take responsibility and do the right thing. 

Just my two cents, and I'm sure that's about all it's worth.

*** Here's the fine print ***

I shared this post (and the fine print) on social media several years ago. I feel it’s appropriate to include it in the blog post as well. So, here ya go:

I have made many decisions over the years that were not honoring to God and went against everything I believe in today. So, I feel like the "fine print" is needed in the spirit of full disclosure, transparency, and clarification.

I know the consequences of choosing the wrong path. I've taken that road. I know the pain of separation from God because I have lived it. I know that selfish behavior leads to destruction because I have taken part in destroying good things. I am ashamed of the mistakes I've made, the people I have hurt, and the chaos I've caused along the way. Once the damage is done, you can never go back and change the outcome. I'm not an expert on righteous living or marriage. I've failed at both. However, I am qualified to tell you who God is because of all He has done for me. He has forgiven every bad thing I've ever done. That's why I want to share Him. Not because I think I have it all together, but because I know I don't. I am a deeply flawed human being saved by the grace of God. I hope y'all know that when I share from my heart it is because I have walked from the darkness into His light. A life in his presence is so much better than what I ever had on my own. I still mess up. We all do. Please don't judge the message by the faults of the messenger. God's truth is absolute. He wants our whole heart. He wants to come first in our life. I'm not perfect, but my God is. He is worthy of our love and adoration. His truth will change your life if you let it and are willing to live your life according to it. Again... I am a mess, but I am HIS mess. I will be a work in progress and under construction until I reach the gates of Heaven. I believe the key to living a life that brings glory to God is to continue working towards His purposes and NEVER give up. We may stray from His path at times, but His truth will guide us where we are supposed to go... if we choose to follow it.

New Normal

It has been awhile since I shared an update on Billy’s ongoing health issues. Mostly because it is apparently a medical mystery and the diagnosis and answers continue to elude his Doctors. It is frustrating, but we are slowly adjusting to the uncertainty of this “new normal”. 

With the global pandemic of COVID-19, new mutations of the virus being seen in other countries, social distancing, masks, lockdowns, rumors of election tampering, and an apparent intentional bombing on Christmas in Nashville, it seems we are all facing the unknown! I take comfort in knowing that God sees the entire picture, even when I don’t. He has a plan to get each of us thru whatever lies ahead, even when we can’t imagine how.  

Billy continues to struggle with chronic back, leg, and nerve pain. He still has all of the same stomach and GI issues. Unless God intervenes, they will be lifelong concerns. He will continue to have regular procedures to monitor the situation and remove any polyps or new gastric Neuroendocrine tumors.

He was supposed to have Parathyroid surgery due to years of elevated parathyroid hormone (PTH) levels. However, during the pre-surgery work up, his PTH levels were normal. Several labs following that were also within range. The surgeon did not want to proceed with surgery because she felt there were too many uncertainties and the risks outweighed the benefits at that time. Now, his PTH levels are high again. His situation has always been a little strange and not a typical presentation of hyperparathyroidism. Multiple Doctors have been consulted about it, but none seem to have a clear answer. Since it has not caused any bone loss or dangerous levels of calcium in his blood, we have decided to hold off on surgery for the time being.

We found out about a month ago that he has multiple abnormal labs concerning his iron levels, and is anemic. The GI Dr. believes it is due to the autoimmune atrophic gastritis. His Endocrinologist is going to talk with a Hematologist to be sure.

He is also still having the severe episodes that cause sudden blood pressure spikes, tachycardia, extreme anxiety, and a bunch of other crazy symptoms. They have not been able to confirm or rule out a pheochromocytoma on his adrenal gland. He is currently on 2 different medications that are commonly used in pheo patients. So far, they are keeping his blood pressure and heart rate from elevating to dangerous levels. Unfortunately, he still deals with the awful symptoms on a daily basis. His Endocrinologist is trying to get the VA to approve him to see an Adrenal Specialist that he knows at the University of Michigan in Ann Arbor. He said it may take awhile to get them to approve it, but he has started the process. 

 Now that you are up to date on all of that, we found out a few days ago about another issue that sounds pretty serious.

They found an abdominal aortic dissection of the iliac artery. Don’t feel bad, we had to look it up too. 

He had a scan Wednesday for GI issues. They called a few hours later and told him what it showed and gave him a list of symptoms that he should watch for. If they occur, he should go to ER immediately because it could mean a rupture/aneurism and be life threatening. Scary stuff. The GI Dr is the one that called. An abdominal aortic dissection is not in her area of expertise, but she felt like they’d likely address the problem quickly. It will probably require surgery. She sent a message to vascular surgery, but we haven’t heard from them yet. I’m sure Christmas delayed things. Hopefully, someone will call us in the next few days.

So, there ya go... the saga continues! More challenges and no obvious solutions. It’s hard to live in the shadows, where you can’t see the path ahead clearly. We spend most of our lives assuming that we have some control over the uncontrollable. Life humbles all of us at some point. Nobody ever said it would be easy... but, God said He would never leave us. We know that He is a problem solver and a way maker! We choose to walk by faith and not by sight. 

If you haven’t heard Brantley Gilbert’s song... Hard Days... click the link below and check it out! The Hard Days sure do make us appreciate the blessings!

Is there anything greater than a Mother’s love?

June 8, 2008. There are pivotal moments in life when everything changes. You know what I’m talking about. An event that frames everything else. There’s the before it happened, and the after. Sometimes, whatever it was is joyous.  Other times, it’s heartbreaking. 12 years ago was one of those life changing days for me. It was by far, the hardest day of my life. On June 8, 2008, the person I’ve loved and depended on since before I was even born took her last breath on Earth. I had to say goodbye to the only person that I knew would always love me. When Mama left, it shook my entire world and my sense of security. Unconditional love is rare. It should be something that every child gets from their parents. Sadly, that’s not the way it is. Some people never experience the absolute and pure love that my Mom gave me. I’m so thankful that I had her. I knew how special it was, but honestly, I don’t think I truly appreciated it until it was gone.  It was in my darkest moments without her, that I finally comprehended that the only unending and unchanging relationship I will ever have is with my Creator and Savior. When I felt alone, afraid, lost, and hopeless... there was Jesus. Grief is a powerful and crippling feeling, but my God is stronger. When I’m weary from fighting the battles, He’s there to remind me that He already won and that He did that for me. There are no words to ever say how grateful I am that He chose Mama for me... and that He loved us enough to make a way for us to be together again forever. Mostly, I am overwhelmed by the fullness of His love for me and His constant companionship. I don’t deserve it and I can’t understand it, but I don’t think I would’ve survived this long without it. In my happiest memories, there was Jesus. During the storms and devastation, there was Jesus. What a blessing to never have to walk alone!

If you’ve never experienced unconditional love, there is Jesus. If you need someone you can count on, there is Jesus. Whatever you need, He is the answer. If you don’t know Him, I would be honored to introduce you. 

https://youtu.be/VZXRIw5uBuY

My DIY advice: Don’t Do It!

It’ll be easy, they said. It’ll fun, they said. It’ll only take five minutes, they said. WELL, I’m not sure who “they” are. The only thing I DO know, is that “they” lied...

Covid-19 is creating chaos around the world. These are crazy days we are living in. Quarantines are mandatory, toilet paper is being hoarded, and cleaning supplies are scarce. My face hasn’t seen make up in days. Sweats and a t-shirt means I’m dressed up. I’ve spent way too much time watching tv, scrolling Facebook, and saving all the easy Pinterest projects that I’m never going to do. 

About that... I saw a 5 minute recipe for Do it Yourself hand sanitizer that only required a few ingredients that I already had. I figured I could whip it together and reuse some empty travel bottles I had kept just in case I ever needed them.
 

 

I mixed the alcohol, aloe vera, and essential oil together with a whisk for 5 minutes, just like the directions said. Nothing was mentioned about the gross glob of plant fibers that had formed in the bowl and would not separate. 
 

I refused to be defeated. I decided to try using an empty water bottle in hopes of shaking loose the slime ball. So, I transferred the bowl blob into the bottle and started shaking. Surprise! That didn’t work either. Then, I noticed the blender bottle that I used for my morning protein shake. It was just sitting on the counter like a great big bright idea and beacon of hope. Sadly, that little metal ball was useless in the fight. Still, I continued to shake until I thought my arms might fall off... but, the evil clump of junk was still clinging together. 
 



 



At that point, my 5 minute DIY project had stolen an hour of my life that I would never get back. I was not a happy camper. I also had never been a quitter, and wasn’t about to start. So, I broke out the big guns. Those little beaters on my electric mixer worker their little steel selves at high speed for at least another 15 minutes. 

 

 



Either the contents evaporated, or were lost in the mixing splatters all over my counter. In the end, my 1 cup of ingredients produced 1/2 cup of “finished product.” 

 



YES, I know there are still floaties.

NO, I don’t care!

It never turned into gel like it was supposed to. It smells like straight rubbing alcohol. There’s not even a trace scent of the lemon essential oil.

Obviously, I am Domestically Challenged. My attempt at making my own hand sanitizer was less than satisfactory.

SO, here’s a SHOUT OUT to purell, germx, and all of the other companies out there! THANK YOU for making those cute little bottles of crystal clear antibacterial gels in an array of happy scents. I appreciate you and will never complain about paying a dollar for the tiny miracle again!

Good Luck to all of the brave quarantined souls out there who want to give this a try. My advice would be to skip it. If you are unable to purchase the coveted hand sanitizer, just wash your hands with soap and water until they completely dry out... and carry around a bottle of rubbing alcohol for times when washing isn’t an option.

 

Trust me, it’ll save your time, sanity, and dignity! You're welcome!

He has blessed this Mess!

Here's the fine print:
It occurred to me that many of you knew me "back in the day" and are well aware of my history of bad choices. I have made many decisions over the years that were not honoring to God and went against everything I believe in today. So, I felt like I needed to add some "fine print" to my previous posts for clarification.
I know the consequences of choosing the wrong path. I've taken that road. I know the pain of separation from God because I have lived it. I know that selfish behavior leads to destruction because I have taken part in destroying good things. I am ashamed of the mistakes I've made, the people I have hurt, and the chaos I've caused along the way. Once the damage is done, you can never go back and change the outcome. I'm not an expert on righteous living or marriage. I've failed at both. However, I am qualified to tell you who God is because of all He has done for me. He has forgiven every bad thing I've ever done. That's why I want to share Him. Not because I think I have it all together, but because I know I don't. I am a deeply flawed human being saved by the grace of God. I hope y'all know that when I share from my heart it is because I have walked from the darkness into His light. A life in his presence is so much better than what I ever had on my own. I still mess up. We all do. Please don't judge the message by the faults of the messenger. God's truth is absolute. He wants our whole heart. He wants to come first in our life. I'm not perfect, but my God is. He is worthy of our love and adoration. His truth will change your life if you let it and are willing to live your life according to it. Again... I am a mess, but I am HIS mess... and He has blessed this mess more than I will ever deserve or comprehend. I will be a work in progress and under construction until I reach the gates of Heaven. I believe the key to living a life that brings glory to God is to continue working towards His purposes and never give up. We may stray from His path at times, but His truth will guide us where we are supposed to go if we choose to follow it.

Health Status: It’s Complicated.

Just wanted to update everyone on Billy. His situation is complicated, but we are heading in the right direction 😊

The Doctor finally called today with the pathology results from upper/lower endoscopy. They didn’t see any new neuroendocrine tumors in his stomach, the colon “polyp” they removed was just scar tissue, and other than some inflammation from chronic autoimmune atrophic gastritis, he said that overall everything looked ok. If there are no new problems, will go back to the GI Doctor in March and discuss when he should follow up with another endoscopy and colonoscopy to monitor the conditions.

We recently met with a surgeon about his parathyroid issues. We also discussed the possibility of removing an Adrenal gland in the future. She seemed to be very concerned and said that she believes that he does have a Pheochromocytoma that has just not progressed enough to confirm. She told us that she is really interested in finding the root cause of all of this and has studied his case at length. She confirmed that his situation is really complicated with lots of factors to consider. Due to the complexity, they want to wait until after he’s had the genetic testing done before they do any surgery. If he does have one or more of the gene mutations, it would likely change what they decide to do surgically. 

We have an appointment to meet with a genetics counselor towards the end of February to discuss which genetic testing should be done. The surgeon said they specifically requested them to check for MEN1 & MEN2 (for Multiple Endocrine Neoplasia), but they may add others as well. So, it’ll likely be several months before we have enough information to make a plan on the best way to proceed. 

We are so thankful for all of your prayers and know they are being answered. We seem to have a surgeon that has a passion for neuroendocrine and Adrenal issues and it feels good to know that she has taken a special interest in his case. She understands the hidden potential dangers of MEN and is considering the entire situation before deciding what to do next. We have tried numerous times over the last 2 years to get them to do the genetic testing because if he has certain mutations, it changes so many things about treatments, surgery, and screenings. They kept telling us it was expensive and unnecessary. Now that his case has been assigned to the surgical department, she understands that he has multiple areas of concern and that could mean he has one of the MEN mutations. If so, she needs to know that before surgery to make a plan to deal with whatever they find when they get in there to look at his parathyroid, as well as how they proceed with the potential of a Pheochromocytoma. So, it’s a huge answered prayer that she requested the genetic testing and we will have the ability to make more informed decisions based on the results. 

We praise God that no new significant concerns were found on the most recent pathology report!! With everything else going on, that is a huge relief. He continues to bless us more than we will ever deserve! 

Thank you all for your love, concern, and encouragement over these last few years. We truly cherish your prayers as we continue to navigate this complicated web of health issues. 

Today is a precious gift, and we are so grateful for it ❤️

UPDATE: PRAISE GOD! All of the genetic testing they did came back negative! We are so thankful. We still don't have many answers, but this is a huge answered prayer!

“We should certainly count our blessings, but we should also make our blessings count.”

—Neal A. Maxwell

Updates on Billy’s health issues

Just wanted to share some updates about Billy for those that are interested. As you know, the last few years have been rough. It seems he’s been dealing with one weird health issue after another. I know that some of you don’t want to read a long explanation with all of the details, and that’s ok. For those that do want to know specifics, it’s easier to put all of the information here instead of repeating it multiple times.

He is having his yearly endoscopy and colonoscopy today. Good times! He has had a hard time with these procedures in the past. From anesthesia not working well enough to finish the procedure, blood pressure and heart rate spikes before they even start, really long recovery times, and ER visits after it’s over from nearly passing out. He needs specific medication and IV fluids immediately after to minimize these complications. We would appreciate prayers for an uneventful day and good results! 

They have to do regular scope procedures for several reasons. The colonoscopy is to monitor the Crohn’s Disease and remove any polyps they find. It will have to be done every 1-2 years or sooner depending on the severity of symptoms. The endoscopy will likely be done yearly, but could be more often depending on the situation. It needs to be done for multiple reasons. First, he has an autoimmune gastritis that causes his body to essentially attack the lining of his stomach. It is considered a precancerous condition. That doesn’t mean it will cause stomach cancer, but it does increase the risk. He also has low stomach acid. Higher acidity is needed for proper digestion. Having an alkaline stomach ph like he does can cause problems. It also makes his body produce high levels of gastrin. The combination of issues is likely what causes his body to produce gastric Neuroendocrine Tumors (NETs). He has already had several NETs removed over the last few years. Thankfully, they have been low grade and not aggressive. They usually don’t even know they have removed a neuroendocrine tumor because they are so small. They do a mapping process where they take biopsy samples from multiple areas in his stomach. The pathologist reviews the specimens and uses a special solution to test for NETs and do staging. So, we usually don’t know if there were any NETs or other precancerous concerns found until we get the report about a week after the procedure. As long as they are only found in his stomach and continue to be the same type of NET, they only have about a 5% chance of metastasizing. However, there’s always a chance that they could become a more aggressive type and if they did grow or spread, they would likely go to his liver. If they ever find any NETs outside of his stomach, that would also be a huge concern. So, careful follow up and frequent screening is necessary. 

He continues to have crazy episodes that cause surges of Adrenalin, elevated blood pressure and heart rate, extreme anxiety, dizziness, stomach issues, and more. He experiences a wide range of symptoms daily. They vary in duration and intensity. They started him on a medication that seems to be helping control the blood pressure spikes. He still has them, but they haven’t been as severe and don’t last as long. Unfortunately, all of the symptoms are still there. He has learned to deal with them better, so that helps. They haven’t found enough evidence to support a diagnosis of a Pheochromocytoma (a type of neuroendocrine tumor on the Adrenal glands), but they haven’t completely ruled out the possibility. Sometimes, it takes many years to find a pheo. We will be talking with a surgeon about the possibility of removing the Adrenal gland that could have a small tumor. Billy is desperate to feel better, so he is open to that idea. I don’t feel comfortable with them removing an Adrenal gland without more evidence.

In addition to those issues, he’s had some abnormal hormone levels over the last several years. His parathyroid level has been elevated consistently. The parathyroid consists of 4 tiny glands behind the thyroid. It controls the calcium levels in your body. When it isn’t working properly, it can cause too much calcium in your blood which creates a host of problems. It can also draw calcium from your bones and lead to osteoporosis. So far, his labs show high normal calcium levels and his bone density scan is normal. For those reasons, they haven’t been that concerned with the parathyroid issues since the other problems have been more severe and they’ve been focused on that. However, his endocrinologist said that it is strange to have such an elevated Parathyroid hormone (PTH) with normal calcium levels. Usually, when the PTH is high, it’s caused from a tiny benign tumor on one of the glands. They can remove it laparoscopically in an outpatient procedure and it’s not a big deal. They finally did a nuclear scan to try to find which gland the tumor was on. However, the scan didn’t show a tumor and it showed the same amount of uptake in all 4 glands. That could mean that the scan just wasn’t able to see the tumor because of its size and location. That would be the best case scenario. The problem is, it could also mean that all 4 glands are malfunctioning. That could be caused from Cancer. It could be related to even bigger endocrine problems.

There are several genetic mutations associated with NETs. One of them is of the MEN genes. If a person has this mutation, they are at a much higher risk of having Multiple Endocrine Neoplasia (MEN). Basically, that means increased potential of multiple neuroendocrine cancers in several places, often at the same time. With his history of gastric NETs, symptoms of pheo, and now the parathyroid issues, this is a legitimate concern. The VA hasn’t wanted to do any genetic testing because it’s expensive and there is no family history that we are aware of. However, with all of the recent developments, they decided to schedule him an appointment with a genetics counselor. That  will be next month. Hopefully, they will agree to some of the genetic testing. If he has any of the mutations, we really need to know that. It would change how often he has testing and follow up, what types of tracers they use in scans, and even what treatments they would use.

He has an ultrasound scheduled this week to try to get a better look of the parathyroid area. We have a surgery consult scheduled for next week to talk about parathyroid surgery. I think they will recommend surgery. They just may not know what’s going on until they get in there. Hopefully, it’s a tumor that can be removed and not a problem with all of the glands. 

He’s also continuing to deal with chronic back/leg/nerve pain. Obviously, those are not problems that carry the potential threats that the other things do, but they still significantly impact his daily life and ability to do the things he wants to do. He’s recently started doing Alpha Stem Therapy with a device he uses at home. It’s supposed to have lots of different health benefits. Hopefully, it will  relieve some of his pain and maybe even help the other issues too.

We are trusting God with all of these things and trying not to worry about things we can’t control. My friend, Wendy, used to say that it already is what it is. The Bible tells us that worrying won’t change a thing. God knows every detail of whatever lies ahead and we know He has a plan to take care of us no matter what the circumstances are. It is what it is... BUT, He IS who He is. 

If you feel led to pray for him, here are some specific requests:

• That there will be no complications with his procedure today and no Neuroendocrine Tumors or other new areas of concern.
• That he will be able to have the parathyroid surgery and it will be routine and they will not find any cancer. 
• That they will agree to do genetic testing for endocrine related disorders, and that he does not have any of the mutations. 
• That God would give us wisdom on how to proceed with the Adrenal issues given the slight possibility that he may have a pheo that they haven’t yet been able to confirm.