There are things that happen in your lifetime that you know will leave you forever changed. My big three are my salvation, the death of my dad and the diagnosis of hypoparathyroidism. The first two are obvious and the last is obscure to most. Each enter my mind daily. For my salvation I am more grateful than I can ever express. Death is something we all experience and must deal with. Hypopara is an ongoing ever-changing pain in the you-know-where. Most people, including medical professionals just don’t understand exactly what hypopara is. It is not a common nor simple condition. Mine was medically induced in 2005. The first night home after my thyroidectomy I awoke in the middle of the night to numb hands, feet and face. This was much more than Mark-was-laying-on-my-feet and they went to sleep. I soon realized that this was on my list of oh-no symptoms. I spent the next couple of days in the hospital/doctors office receiving calcium intravenously. I was told my body could not absorb calcium and I would need to take it daily to keep my levels up. If it only was that simple!
The next several years was a lesson in being in charge of my own health. A lesson on the importance of education, discipline, transparency, perseverance and joy in my circumstances. Hypopara is a rare incurable condition that some people are born with while others are medically induced after damage to the parathyroid glands. These little fellas regulate parathyroid hormone PTH and can lead to decreased blood levels of calcium and increased levels of blood phosphorus. If I am low my first indicator is numb tingly hands and feet while feeling sluggish and fuzzy brained. Fuzzy brain causes me to not be on top of my needs therefore I can be slow to treat my symptoms. Officially it causes tingling or burning in your fingertips, toes and lips. Muscle aches and cramps in legs, feet, abdomen or face. Twitching or spasms of muscles. Fatigue or weakness. Painful menstruation. Patchy hair loss. Dry, coarse skin. brittle nails. Depression or anxiety. Phew! I feel anxious just thinking about it.
Everyday is a game of defense. I don’t leave the house without my meds. Everything I eat or do contributes to my condition. Stress and processed foods are my enemy. On my best days stress is low, I get enough sleep and exercise, eat real food and take my meds correctly. It isn’t easy to be me. Well, the healthy version of me. One thing I have learned is the diligence is worth it! People often say to me, “Oh, I don’t want to take medication” “I could never change my eating habits” “I don’t have enough time to (fill in the blank)” I can identify because I feel the same way, it just isn’t my reality.
Game changing is something we can count on in our lifetime. I just don’t know how people do it without Jesus. There are days I barely do it with Him! My big three will never change but I have changed. All I have experienced has made my faith stronger and my dependence upon my Lord more. I don’t want my life to be difficult but on some days it is. My identity isn’t in my illness or my life situation. My identity is in my Savior. My salvation is what changed my game.
I love watching American Ninja Warriors. I have enjoyed it long before it became mainstream. There is something about an obstacle course that gets my attention and causes me to see possibility. Good athletes always make a sport look effortless or at the least doable to those of us that have never done it. I secretly think I could shimy across the Bungee Bridge or any other bridge-like obstacle. I realize that anything requiring hanging or climbing would have to be worked out on the Monkey Bars at my local playground. If they could lower the 14+ foot Warped Wall to about 4 feet I would be willing to give it a try. Wouldn’t everyone?
Life can feel like one big obstacle course. This week feels like I have Twilight Zoned myself right into a test of strength, speed and agility with a side of sharing. Only lately, I feel like sitting down mid-course. Not quite giving up. Just having some quiet time to gracefully dismount instead of crashing into the water.
American Ninja Warriors are ordinary people doing extraordinary things. What we miss is how many times they hit the water. Everyone I know faces obstacles. Obstacles come in many shapes and there is no end to what can throw us off course. To make life look effortless isn’t something that comes without training. How we have trained for obstacles often determines how we handle them. What we have stored inside us surfaces to help us face the challenge in failure or victory.
My mind recalls the words I memorized years ago from an old Beth Moore bible study. I believe God is who He says He is. I believe God can do what He says He’s going to do. I believe I am who God says I am. My training isn’t without but within. Even if I sit down mid-course focused on my failure my heart knows. It isn’t my strength, speed or agility that will help me reach the buzzer. It is believing God.
I haven’t written in awhile. It isn’t that I don’t have anything to say. I am seldom without words. I have been busy. To quote a friend, “I’ve got stuff to do!”. I have been camping with hubby, to the beach with a girlfriend, training for a new BSF position, working and going to doctor appointments all over the place. All this while trying to be a good wife, daughter, friend, hairstylist… well, you get the picture. It is much of what each of us is strives to do as we go through life.
After a recent study of King Solomon’s life I read through the book of Ecclesiastes and feel I am left with much to consider. I could prattle on about eternity but I must admit eternity is not what stood out to me. I know my eternity is secure. It is the daily dealing with this life that are immediate in my heart and take space in my thoughts. The never-ending quest to be in God’s will. Some days it is easy peasy choices that don’t require much thought and little sacrifice. Other days I am left looking upward (surely you do it too) and proclaiming REALLY?! When faced with the unknown I find it best to hold to what I know. My to-dos I know from Ecclesiastes is “Fear God and keep His commandments” and “Whatever your hand finds to do, do it with all your might….”
I will be going to Mayo Clinic in Florida at the end of July to receive a “second” opinion. I feel sort of like the tree in my photo. I was standing in my forest enjoying my view and suddenly a foreign limb transfixed itself into my world. So what will it take to shake off this foreign limb? An earthquake? A storm? A sympathetic wanderer? And so waits the tree, adjusting to reality while quietly hoping for an intervention. Now excuse me I’ve got stuff to do.
My sewing machine died this week. I have had her since the eighties and I wasn’t her first owner. Sewing is one of those things that many of my friends don’t realize I do. Mostly because I don’t do it often and I am not very good at it. When I have down time my brain starts dreaming up things to make and I currently seem to be focused on fabric. So out comes my seldom used sewing machine. After about a week of sewing I needed to make a bobbin and the clutch would not release. This lead me straight to the internet and long story short (smile) I broke my machine. I think I got bad advise. The sewing machine repair guy also thinks I got bad advise. Well, it wouldn’t be the first time. I hate when it happens, especially when I am suffering the consequences of said advice. The internet is a bevy of information to wade through. The problem is disernment. Bad advise often makes sense or looks really appealing. But it is still bad. I have learned that knowledge is power and I just need to be careful where my knowledge comes from.
In dealing with my health I have been overloaded with information. I have pursued several options and my path has not been quick, clear or straight. I recently decided to simply wait before I proceed with any treatment for my cancer. The cancer is not in a good place to remove surgicially and Thyroid cancer is usually slow growing. It seems that God has me in a place of waiting. An action that I am getting better at. As I wait I am asking God to take away my cancer. I am taking care of the health that I have and being content in my circumstances. I researched a few sewing machines online but just couldn’t commit to a new one. A friend advised me to borrow instead of buying and I am currently trying my mom’s sewing machine. Borrowing was good advise.
Being off thyroid replacement medication feels like you have been in a car accident. There may not be any visible injuries but every part of you aches. Even your hair. Then there is the brain fuzz. I imagine it was what my grandmother who had Alzheimer felt like. She realized she couldn’t remember. There is a loss of control and things teeter at the edge of recall. It is difficult for most people to understand that you are just not 100%. I look the same. Well almost. I look like the tired-didn’t-comb-my-hair version of me. Although I am able to function everything takes at least fifteen to thirty minutes longer and requires a nap. I will spare you the funnies about Husband having to guide me to the proper vehicle (too many choices), forgetting what year it is (after all it is only March- isn’t it?), forgetting to rinse out my conditioner (I am proud my hair got priority). It is good to have a sense of humor otherwise I would just refuse to get out of bed. And I have done a fair amount of that. This brings me to the out of whack emotions. There aren’t enough emojis to express how I feel. Not to worry because it is quickly passing, unreasonable, amplified emotions. Normal Deanna runs even and we look forward to her return.
I began this week off my thyroid medication and then received two Thyrogen shots to quickly halt my thyroid function. This prepared me for RAI (Radioactive Iodine 1-131). The day before scheduled RAI, I took a tracer and had a bone scan to determine if the iodine will uptake. I have had this treatment three times so there was a possibility that it might not. That is exactly what happened. No uptake. I leave the hospital feeling a bit put out. I felt mentally and physically prepared and the treatment isn’t going to work for me. Time for Plan B. We backpedal and try for the PET scan my insurance refused in December. This time they approve and currently I am awaiting results. This will tell us if there is cancer anywhere else so we can choose how Plan B will play out.
Last week in my small group we talked about the importance of memorizing Scripture. I know it is hard to imagine ever being somewhere that Gods Word is not available when you need it. This week I had 2 scans and for approximately 90 minutes I had to be completely still with only my mind to entertain me -yeah scary. I found comfort in the Scripture I had tucked away. The KJV recall is from childhood, other versions I memorized as an adult and some verses I just get the gist of. Versions or exact words do not matter. I hold to the meaning. Truth that will be with me always, no matter where I am or what I can remember.
I have a tendency to mindless overeating when I am stressed and sometimes when I am happy. Sugar is my drug of choice when I need a bit of a pick me up or I am distracted or just too busy. Currently I am floating on a sugar high and Easter candy is my new best friend. I have discovered that jelly beans are in season! They are reasonably priced, readily available and the selection is extensive. I admit that it can be a challenge to find the perfect bean. The jelly bean must be really fresh. I prefer bright happy colors such as orange, purple, blue or green with a nice fruity bouquet. A compliment to the firm coating that surrounds a soft smooth center. A burst of tangy yet sweet flavor intensity is the highlight of the bean and it what leads me to consume one right after another. I am only limited by my memory of running into a friend at the dollar tree when the maple leaf cookies were in season. I had to explain that the cookies were seasonal so the armload I had was for the year. They freeze quite well. No kidding. I am not sure I could use the same story for jelly beans. I guess I need to do a bit of research on freezing…
I stopped my thyroid replacement Saturday and will begin Thyrogen shots on Monday. Tuesday I will have another shot, Pre-Scan and consult. Then on Wednesday Labs and Radioactive Iodine treatment. When I leave the hospital I will have to be isolated for several days (I can’t remember exactly how many, they will tell me Tuesday maybe) Then a post-scan and resume thyroid replacement the following week. I plan on being off work for two weeks and Husband will be off to take me to my appointments. It was the week of Thanksgiving when I found out my cancer had returned and since then I have experienced a series of events. I am amazed by things that each of us go through and continue to move forward. I am inspired by those around me who suffer and still look outside their own circumstances to encourage me in mine. I am inspired to hear how God has worked in impossible situations. How He has healed, guided, provided, blessed, enabled and continues to do so regardless of our tendency to wander…
As I wander down the candy aisle I am able to see past the sugar haze to the One who not only can pick me up but will carry me through. Onward!
I realize I skipped part 3. I will come back to it I promise. It is just that part 4 feels really fresh. It is nowhere near over so hence the a. It begins in November 2018. 2018 was a year fraught with unwanted change and grief. I was ready to be done with it. Through it all I appeared to be managing my health really well. I had a rough spell in April that required an adjustment in my meds. Other than that things were looking good. A colonoscopy showed my colon to look “just like a colon is supposed to look.” I was managing my nutrition and exercise well. I wasn’t experiencing low calcium symptoms. I was feeling pretty darn good. I was. In November I had a routine ultrasound that came back suspicious. I went for a biopsy and Dr E told me immediately that it was Cancer. Dr. N called me and wanted me to see my surgeon who sent me for a CT scan. Dr O called and wanted me to consult with specialist in NC. I have a consultation with Dr S that gives me an overload of information. Dr S wants me to see a thyroid specialist but I am unable to get an appointment. In the meantime my insurance will not approve my PET scan. I have another utrasound. Dr S is concerned about the location of the tumor and damage to a nerve if he operates. He still wants me to see Dr H the thyroid specialist to see if she could do an Alcohol Ablation. Christmas is upon us so I go home and wait upon the powers that be.
At the first of the year I am finally able to get an appointment on January 29 with Dr H in her new office in Charleston, SC. It is a three week wait. For the last month I have scheduled my clients appointments telling them I might have to move them. I continue to do this. Husband has been on jury duty since October and has had alot going on at work. We are dealing with lots of unsettledness. I feel like I can’t commit to anything because I don’t know what I will need to do. I like having a plan. I am willing to deviate but I want something to deviate from. I trust God. I trust His plan for me. Often it isn’t exactly clear what I am supposed to do. I think for believers knowing Gods will through the details is often quite difficult. Do I go left or right? Wait or move ahead? I wish God functioned like Alexa. I could just say, “Father, what do you want me to do today?” And then hear His audible voice. Sigh. I know to consult His Word. But it fails to give me the details of left or right. What His Word does tell me is who He is. And without knowing who He is I could never begin to know His will. So in my struggle to make decisions and to actively wait, I will rest in who He is. Father, Savior, Redeemer, Healer, Provider, Omnipresent, Omniscient, just to name a few.
I saw Dr H in Charleston. I admit I have a dr-crush on her. She is caring, smart and pretty. She did a very through ultrasound and reviewed my medical history as well as my current regimen. Unfortunately she did not think I was a good candidate for the alcohol ablasion. It is just too close to that darn nerve. She reviewed my past records from 2005 and consulted with my three other doctors (crush!). Conclusion: The plan is to see if I can “uptake” radioactive iodine to shrink the tumors. And so I wait for insurance approval and further direction as I focus on who God is.
I had begun to call my first go around with thyroid cancer The Big Inconvenience. I had survived. I found it doable and at this point it mostly felt inconvenient. I was still trying to figure out how to live with HYPOPARA and I was still managing my daily meds. Both with no end in sight. The endocrinologist I began my journey with had retired and I began to see the Nurse Practitioner. JG was great. She spent time with me and listened when I had issues. I really felt like a person and not an appointment time slot. She found part 2 of my cancer. It was 2013 and for the last eight years I had been having the regular blood-work and ultrasounds. When things showed up she wanted me to go for a biopsy. I had done all this before and I had opinions about who I would go to. She patiently send me to someone more specialized in delicate area biopsy. My new Cytopathology person Dr R was amazing. It was still painful but a much better experience than the first go around. I was surprised with the results because thyroid cancer was supposed to be the easy one. No big deal in the cancer world. The word about town was that it was curable. We next had to find a surgeon and I had gotten pretty choosy after the first experience. I landed with Dr O. Since this wasn’t my first party I felt I knew what to expect. Not a lot of the process had changed. The nurse would start to go over things with me and I would inject my own view of what was going to happen. I am sure I was annoying but I felt annoyed. There are lots of important details that they don’t exactly share up front. I want the whole story. I want to know what to expect and to have a plan. I can veer from the plan but I need to have one in place. Aside from the problems with my calcium levels (hypoparathyroidism) following the surgery, everything else went fairly smoothly. I liked my new surgeon. He made another scar right above my old one.
I worked as much as I could during the process and I had lots of help. Off my thyroid meds all my appointments took 15-30 minutes longer and I had trouble doing all the extras. Laundry, scheduling and cleaning up was difficult at best. At home I was equally worthless. I was exhausted in the morning and worse in the evening. I couldn’t take a shower without resting before I could dry off. One day my girlfriend left me something in my mailbox and I thought, well that’s too bad it might as well be in Ireland. I thought about driving down to get it but didn’t know where my keys were. Chronic fuzzy brain was also a problem. Please don’t ask me anything because answering questions was a struggle. I love how each time you go to the doctor they ask the same questions over and over. I wanted to tell them that we could just look at my computer file and that way we would both know the answer.
A lot of what I experienced has been lost due to my lack of memory or is mixed up between surgeries and treatments. I did learn that the human body can mindlessly function through things that are habitual. I learned that suffering grows my faith and my relationship with Jesus. I have learned that we need each other. That shared experiences are the things that hold us together and cause us to love more deeply. That it is okay to ask for help and what a blessing it is to receive needed help that you didn’t have to ask for. We have all asked someone, Is there anything I can do? I have learned that to be a friend is to just do it.
This isn’t the first time someone has told me that I am complicated. I get it. I feel complicated. When I try to explain my medical history it is hard to get it all straight in my head and then verbalize. Every new doctor I see has to be educated in Deanna and from there do their best to figure out what I need. It is complicated. The human body is amazing. Although we are individually responsible for our own health it is also a collaborative effort. We find ourselves at the mercy of insurance companys, doctors, nurses, assistants, technicians, labs, technology, appointment makers and even the person that checks us in. It is a delicate balance and it is complicated. When life gets messy I love David’s Psalms. How he pours out his heart. He holds nothing back from God and tells Him exactly how he feels because he knows God can handle it. David feels forgotten, fought against, slipping, guilty, brokenhearted, rejected, slandered, attacked by enemies, despised, mocked, insulted, surrounded by dogs, encircled by evil, stared at and gloated over– just to mention a few. Sound familiar? I am sure David felt complicated and he knew God was not suprised or baffled by compliciation. I wonder how many times David thought back to how it felt to slay Goliath. How it felt to depend completely on God’s power, step into harms way and experience an impossible victory. I think he remembered Gods power through all the other complications in his life. I think so because when I read his Psalms I see that he not only pours out his suffering but he praises God in the midst of it. He knows that God can take care of his enemies, his suffering, his health, cancer, insurance and every annoying thing that comes against me. Okay I added those last three because they are personal. Like David, I remember how God has enabled me in the past. How He has carried me. God and I have history and like David I am confident in the mercy of my Lord and Savior. It is not death I fear but what I might have to endure to get there. It is complicated, this feeling of peace entangled in helplessness. The feeling of wanting God’s will but telling Him exactly what I think I need. “I cry aloud to the Lord; I lift up my voice to the Lord for mercy. I pour out my complaint before Him, before him I tell my trouble.” Psalm 142:1-2
In faith, Deanna
PS This week I was unable to do a scan because of insurance and see a specialist because I couldn’t get an appointment. Dr. S did spend well over an hour with Mark and I discussing options and what ifs. My next step is chasing down the specialist –Dr. H–to get a consultation and see if I am a candidate for a newish procedure. If that doesn’t pan out I have a few more options. In the mean time I am brushing up on prayer, persevering and trying my best not to be compliciated!
I have a friend of a friend of a friend that usually says “to make long story short” about fifteen minutes into the story (smile). My LSS goes like this. My first thyroid cancer diagnosis was in 2005. I went for a CT scan on my sinuses and since I am allergic to the contrast, I had to do a prep. Dr. L decided to scan my whole head and neck. This was a God-thing because that was how my first cancer was found. Mark and I were both self-employed at the time with pre-existing conditions so insurance was a nightmare. I was quietly living with Crohns Disease and we had what was called TNCare. Not alot of doctors were willing to take TNCare patients so I was limited who would see me. So, I landed with Dr F. My journey started with a very painful biopsy and then surgery to remove my thyroid. After surgery I had complications that resulted in me having Hypoparathyroidism (poof! I now have two chronic conditions). My parathyroids were damaged during surgery so the calcium and phospherus in my bones and blood could not regulate on their own. This resulted in several ER visits and much adjusting of medication. This is a rare condition I will live with for the rest of my life. The rest of my treatment seemed pretty standard. After having my thyroid removed I had no thyroid function so I suffered all those side effects experienced when you have no thyroid function. I was exhausted, weak, emotional, had dry skin, hair loss, was always cold and ached all over. And just when I thought I had enough I had to do what I fondly refer to as The Ridiculous Diet. The diet was to increase the effectiveness of my upcoming raidoactive iodine treatment. Prohibited foods: Dairy, Egg Yolks, Seafood or anything from the ocean, Processed or prepackaged foods, restaurant foods, baked goods, soy, chocolate, Red Dye #3, beans, sea salt or iodionized salt. See why I called it ridiculous. When I recieved the RAI I had to be in isolation at the hospital for several nights. I remember telling Mark that we married for better or worse and I was pretty sure this was the worse. With surgery and treatment behind me I could finally start my thyroid replacement horomone and was certain things had to be getting better. However, my daily medication was a whole seperate ordeal. My calcuim levels were so bad I needed to take calcium three times a day. I couldn’t take calcuim or my thyroid replacement within two hours of each other or anything else. I also had my crohns medication that needed to be taken two times a day. This left me with six times a day that I needed to take meds at least two hours apart. If I messed up on my schedule I couldn’t take everything that day. If I missed calcium I had symptoms quickly. The other meds took a bit longer to feel a missed dose. This did this for the next ten years…
As I revist my LSS I wonder how in the world did I do this!? How do other people do this!? And I smile because I am blessed with a huge support system. I am loved. I have purpose. The God of the universe knows my name. And it is simply because of these things that I am able to continue.