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.
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!
The first rain upon the earth lasted forty days and forty nights. Our current weather causes me to think I should gather some animals. Build a boat. Goodness gracious it is even raining in the movie currently playing in my living room! I wish I could say my attitude isn’t determined by the weather, but I can’t heartily proclaim that it isn’t. I am an outdoor gal in need of some vitamin D. I feel trapped indoors and seeped in dampness. Waterlogged, as if I will never be dry again. I don’t suddenly feel better when someone proclaims that at least it isn’t snowing. Bah humbug! Yes I admit to a touch of seasonal depression. I am usually able to rally and keep the blahs at bay. After all, a season marked by sweaters, snow days, soup, binge watching, napping and making plans for spring can’t be all bad. And so the rain and I continue. I have been trying to be in charge of my own health while depending on others. I am learning to be patient and at the same time be productive. I am learning to be content where I am as I am moved into a fresh perspective. Sometimes the winter drags on a bit too long and the rain feels neverending. I know that when spring comes she will be sweet. In the meantime I will put on my galoshes and wade on through. I am hoping it won’t take the full forty until the promised rainbow.
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.
A tree fell on our house today. It is the kind of thing that happens when you are minding your own business, waiting on your appointment with the specialist to consult about your fourth round of thyroid cancer. I am filled with disbelief. It is times like these when I say, Really!? I mean REALLY!? This is how it is gonna be? You know how it is when you think you are at your stress limit. Last week just for the fun of it I took the Holmes-Rahe Stress Inventory. I have experienced lots of change in the past year and just needed a bit of affirmation. So yes, with the score of more than 300 points I have an 80% chance of a health breakdown in the next two years. This was not exactly the results I was looking for. I just wanted it to say yes you have had a lot going on and we understand how you feel. Bless your heart. Did I mention there a tree is pressed against the window behind me? The tree wasn’t even included in the list. It is a good thing I have resources. I know the end of the story. In John 16 Jesus gave the disciples a promise, “I have told you these things so that you will havepeace. In this world you will have trouble. But takeheart! I have overcome the world.” In this world I am having a bit of trouble. The kind of never-ending stuff that life just keeps tossing out. But now I take heart! I leave you with a picture of the tree in happier days hanging out with our black snake, Snake. In the words of Scarlett O’Hara, tomorrow is another day.
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.
I resolve to only make resolutions that I will enjoy keeping. Why set myself up for failure? I always hate January at the gym. It is impossible to get a good workout in because of the crowd. Then February comes and the crowd goes away. There is a pressure to come up with a life changing resolution that actually changes your life. So, several years ago I decided to resolve to only do fun resolutions. Things that I enjoy and look forward to doing. Such as drink more wine. That was a enjoyable resolution that broadened my taste buds and appreciation for good wine. See more plays. Also enjoyable and resulted in lots of dates with my hubby. Play with what you have. My way of being content with what I have and it forced me to get more organized so I could find what I have. This year it is a toss up between get outside and hike or do more yoga. Both are things I enjoy and might actually help me become healthier. It might encourage me to focus on maintaining or bettering the good health that I have regardless of the cancer. Change is the bottom line for a resolution and the new year symbolizes new beginnings. I love in Scripture when Paul talks about believers becoming a new creation in Christ, the old is gone and the new has come! (2 Corinthians 5:17) This not only speaks of salvation, but of the sanctification process that Christ works in each believer. Although sanctification is ongoing, I feel that the new year encourages my partipaton in the process. It causes me to examine myself. Do I like what I see? My life goal is to make Jesus smile. Am I? I think get outside and hike will be my catalyst. Happy New Year!
I am a glass half full kind of person. I can’t help it really. I am blessed with being able to see different sides of a situation and I am naturally drawn to the full side. But sometimes my glass gets tipped over. It throws me off and it takes a bit to get it upright again. It’s like one of those days when gravity always wins and no good deed goes unpunished. There is a line in Psalm 22 that describes it for me exactly. “I am poured out like water…” Wow. If you have ever felt this way you know exactly the feeling David was describing. It feels like I am spent and I have nothing more. I have often heard well meaning believers say that God won’t give you more than you can handle. Well I don’t think that is exactly true. Without getting into a Scripture debate I declare my proof is in life. I know because at this moment I have more than I can handle. You disagree? You think I am handling? I am certainly not doing it in my own power. I am spent. Poured out like water. I think I have misplaced my glass and I am not going to look for it. Instead I will paraphrase 2 Corinthians 12:9 His strength is made perfect in my weakness.