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.
In faith, Deanna
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.
“The Lord will fight for you, you only have to be still.”
I plucked this Scripture from the book of Exodus where Moses is speaking to the terrified Israelites just as Pharaoh and his massive army has them hemmed up to the Red Sea. Then, just as Moses tells them to be still, in the next verse God instructs them to move on. Then things get familiar. After all, the parting of the Red Sea is where all the excitement is. But the part that stands out to me is that the Lord will fight for me. And as I settle in to my happy place I realize my part. I need to be still. To be still is an action. Especially for someone who wants to do something. It requires thought, discipline, perseverance and trust. The Israelites didn’t just go running up to the sea and it part like an automatic door opening into a department store. They had to stop and look around. See the enemy approaching. Realize their situation. Feel terrified and wait on God. God took a seemingly hopeless no way out situation and opened a way only He could open. That is how we can actually see God. How we know He exists. How we know His power.
Lately I have felt a bit hemmed in. Like I have turned a corner only to find a brick wall. I am trying to be still and not be frustrated with where I am. The introvert in me finds transparency exhausting. I came home from work today and slept. It was one of those naps where you feel like you have just lain down and shut your eyes but when you look at the clock two hours have passed. I feel restored in rest and lately I am energized to share. That’s new for me. The thing I have realized this week is that I am not just going into battle but I am going into battle with an army. That is power.
In faith, Deanna
It is hard not to feel just a bit put out. Like maybe I have done something wrong or failed to do something right. The ongoing frustration of not being able to stop the ride. I could be angry but I don’t know where to direct said anger. As a believer it is easy to say that God has a plan. But it is often difficult to feel completely on board when you don’t have the whole plan laid out in front of you. When life feels like a detour. Thyroid cancer is supposed to be a good one. Easily overcome. But that just isn’t my experience. The introvert in me wants to hide away and quietly consider my situation. But that just isn’t working for me. So, what is a girl to do? I will hold tight to my purpose -to know God, love Him, enjoy Him and glorify Him. And with that foundation I will take some advise given to me a few cancers ago, blog. Phew, never thought I’d say that. I would love for you to come along side me. I apologize ahead for my bad grammar, rants, whining, periodic embarrassment and dry humor. I am thankful for this opportunity. As I begin my forth round of thyroid cancer, my goal is transparency and always to make you and Jesus smile.
In faith, Deanna