My Thyroid Story: The Twisted Road to Recovery (Part Three of Four)

March 25th marked the one-year anniversary of my being diagnosed with Graves' Disease. In the months that followed, I learned I had thyroid cancer as well. But through all of the repetitive testing and unexpected procedures I found there were few sources which documented events specifically. I would have anticipated, in this enormous blogosphere of ours, at least two or three personal experiences with Graves' -- not so. Of course, I couldn't resist taking a crack at changing all that. This is Part Three of that effort:

At this time, I'd like to briefly mention nurses. Saints who are obviously, sadly accustomed to long nights and psychotic patients. 'nuf said.

Morning began around 5AM. This would be Day One of Synthroid for the rest of my life. Throughout the day, I would receive steroids for the swelling, calcium, a blood thinner to prevent clots, and eventually insulin, as the steroids would begin spiking my blood sugar. I journaled, texted, tried keeping track of the names of the staff -- anything to keep my mind off this infernal tube. I prayed, and solicited as many people to pray before or at noon, as I possibly could.

The specialist and his entourage were right on time; the others -- an anesthesiologist and two nurses were present in the event I was going to be re-intubated. Also present was another Otolaryngologist. See, even doctors get second opinions. The tube was removed, and everyone stared like I'd just gone five rounds with Mike Tyson: "Can you breathe?" "Are you OK?" Obviously, my affirmative responses did not satisfy them; they had to "scope" me. Now, this scope is an insidious device they insert into one of your nostrils and down into the back of your throat. The objective here is to see how the vocal cords are functioning. According to Otolaryngologist #1 (hereby known as Satan's henchman) with whom I'd become acquainted in the recovery room, "nothing's moving." In other words, my vocal cords were still paralyzed in a partially open/ partially closed position: too closed to allow for adequate breathing; too open to allow for the passage of liquids safely to my esophagus. Otolaryngologist #2 (aka: my new bestie) took a look. "Seems to me there's a bit of movement on the right side; they just might recover." Sweeter words were never spoken. Satan's henchman looked deeply into my eyes. "How do you feel? Are you breathing OK?" Again I answered in the affirmative. "Know this," he said, his putrid evil breath wafting about the room, "if you cannot maintain a proper airway we will intubate you again. We are keeping you here in ICU for observation until we're sure you will not have an event." Tears welled up. Relief. Gratitude. Fatigue. All the emotions of the last few hours (?), days (?), months converged right there. I'd finally been cut a break.

True confession: I still see the henchman's face, and I still feel animosity toward him, but the reality is, he was doing what was best for me at the time. Not only could my airway have closed off again, but aspirating food or water could have caused a choking situation or at the least, foreign bodies in my lungs, which could have eventually contributed to pneumonia.

The next couple of days were all about working my way out of there. I began seeing a speech pathologist with the goal of being able to retrain and strengthen the muscles around my vocal cords that they might begin compensating for the lack of activity in the nerve(s) that had been damaged. This was as frustrating an endeavor as I'd ever experienced. I'd never had paralysis of any kind, and having someone tell you repeatedly to do something that is currently physically impossible, is mind-boggling, to say the least. I couldn't get rid of the image of Marilyn Hassett, as Jill Kinmot in The Other Side of the Mountain, demonstrating to her clueless boyfriend her newly achieved ability to pick up a potato chip after her paralyzing accident. She'd worked for weeks to be able to pick up a single chip, while most of the rest of the bowl cascaded to her lap. I finally understood the concentration necessary for her to do such a simple task.

I underwent a swallow test. I'm sure there was some high-tech medical name for it, but I forget it. Extremely interesting is what it was! I sat in front of a screen, similar to receiving a chest X-ray. The technician gave me various consistencies of pudding and juices laced with barium, beginning with the thickest and working our way to the thinnest consistency. It's not what you'd expect: the thinner the liquid, the tougher it is to swallow; thin liquids dissipate and are much harder to force straight down the esophagus. The technician taught me to tuck my chin in order to close the vocal cords, blocking the trachea, and forcing thinner liquids to the back of the throat and away from the airway. She also allowed me to watch my cords not functioning on the screen. Yeah, disappointing, but this was going to ensure I could start trying some foods.

About these "foods." I use the term strictly because that's what they called them, but for the first two days, they were nothing more than chunky Cream of Wheat and thickened -- yes, I did say "thickened" -- juices, milk and coffee. I could have pudding! You know, the canned artificially tasting kind. I never want to see a Snack Pack again. Sadly enough, I devoured everything that came on my tray. By now I was up and pacing the floor on a regular basis, and burning up far more calories than provided in fifty ounces of thickened whatever each meal. And I was ridiculously grateful.

Six days after surgery I was released. From ICU. From the hospital. And all I wanted was a garbage pizza. I've learned this is my "go to" when I'm feeling particularly liberated from one thing or another. Plus, throughout our relationship, Scott and I have chilled, watched movies, and made pigs of ourselves, all in the presence of a store brand, rising crust, garbage pizza.

Follow-up visits began just three days later. My stitches had been removed before I'd been discharged, so the surgeon was the first to see me. Unfortunately, the pathology results had been inconclusive, and she couldn't release me from her care until they'd come back from a special "tissue guru."

Ear, Nose and Throat was next. On my first follow-up with them, they scoped my throat again. (And because no one told me the first time I was scoped, I will give you a heads-up: there is spray they can give you to numb your nasal passages, so this whole procedure is a little less uncomfortable! Still creepy, yes, but far less uncomfortable.) "Still no movement on those cords," he said. None? Nope. I am convinced, at noon or so the day after surgery, the very moment "my new bestie" peered into that scope and thought he saw "a bit of movement on the right side," what he really saw was the prayers of a dozen or more faithful warriors standing in the throne room of God, being answered. To this day, there has been much improvement in my voice, but largely because of retraining; the nerve(s) that was damaged still ceases to function. I spoke in a whisper for a month or so afterward. Eventually I reached "Minnie Mouse" register. Today, my voice is still a bit breathy when I get excited; it's somewhat gravelly otherwise. Breathing can be difficult when I have overdone it, or I am exerting myself in extreme temperatures. Chances are, I will never sing publicly again, but I sing as long as my voice will allow (and as long as the people around me can stand it).

My Endocrinologist is currently seeing me every six months. After a few adjustments, the medication seems to be working. My last round of blood work actually showed my levels to be on the higher side of normal, but as long as I feel good, as long as I'm experiencing no symptoms of hyperthyroidism, she is willing to call it "problem solved."

So, back to the pathology...

My Throid Story: Surgery (Part Two of Four)

March 25th marks the one-year anniversary of my being diagnosed with Graves' Disease. In the months that followed, I learned I had thyroid cancer as well. But through all of the repetitive testing and unexpected procedures I found there were few sources which documented events specifically. I would have anticipated, in this enormous blogosphere of ours, at least two or three personal experiences with Graves' -- not so. Of course, I couldn't resist taking a crack at changing all that. This is Part Two of that effort:

A complete thyroidectomy was scheduled for June 5th, 2014. It was a routine procedure, scheduled to take about an hour to ninety minutes, with an overnight stay in the hospital simply for the sake of caution. My entire thyroid would be removed, thereby eliminating the current target of the Graves' Disease which had rendered me "hyperthyroid" for the past several months. After the surgery, with no thyroid to absorb iodine and control cell metabolism throughout my body, I would become "hypothyroid;" it would then be necessary for me to take a synthetic thyroid hormone each day for the rest of my life.

In the weeks before my surgery I scheduled my time off with my employer, filed my paperwork for my short-term disability, snapped up a couple of library books for the post-surgery period, made sure the pantry and freezer were well-stocked, and even emailed account information and passwords to a close friend "should anything happen." Scott and I had dinner with good friends, reassured our twelve-year old repeatedly, and spent a little extra time together -- for as much reassuring as we did, we could have used some ourselves. I did not have warm fuzzies about this going in, but what else was there?

The day of, we arrived at the hospital even before the surgery center staff; I was anxious to get this over with. I knew I'd be much happier once I was recup-ing in bed at home, surrounded by books and dogs. (I'd even made sure I'd bathed them the day before -- the dogs, not the books.)

I believe prepping for surgery took longer than the surgery itself. Now is a good time to say, I am always intrigued by the way anesthesia works. By the time you realize it has gone to work, your friends are already posting your ridiculous antics on Youtube. I vaguely remember showing the nurses who were prepping me, one of my tattoos. Ugh!

When I awakened in Recovery, like Custer at Little Bighorn, I was surrounded, and it was surreal. A man I'd never seen before was almost nose-to-nose with me (he ought to know better than that) telling me I couldn't breathe. Yeah, seriously. You wouldn't think someone would have to tell you that kind of thing, but there he was. Worst part if it? I was pretty sure I could. Sniff. Sniff. Yep. Breathing.

He explained I was not getting enough oxygen to my brain. (I think some of the folks who know me would agree I probably checked-in that way.) They were going to intubate me.

"Nooo," I whined. Just then, I looked over his left shoulder, through the half-dozen other faces gathered, and saw my husband -- blanched, wide-eyed and fearful. "Ok. Ok. Just do what you have to do," I told the stranger. The "room" emptied out, the curtain was closed, and I drifted back to sleep praying Scott would be alright.

I have no idea what time it was when I woke up in ICU. Nurses were everywhere, and I just wanted them out. Everyone was telling me something. "Your husband is right here." "Do you know where you are? You had to be intubated." "Are you ok? The tube is going to be very uncomfortable." "My name is ___. I'm going to be taking care of you for a bit." E-nuff!! Eventually the room did clear out and I was able to visit with my husband and the Lovely Katie. Lovely Katie, my cousin, had stayed with Scott throughout my surgery, and her smile lights up the grimmest of circumstances. Although our visit required me to write my every word, it made me forget just how horrible a thing being sick when you don't feel sick really is.

So what, exactly, had happened? Well, in my visits with the surgeon we had discussed possible complications. I had also visited fairly reputable sites like WebMD and MayoClinic to do some of my own fact finding. The long and the short of it is this:

• An average adult female's thyroid weighs approximately 14 grams; mine weighed 56 grams.
• Damage to the vocal nerve which controls the opening and closing of the vocal cords as we breathe and eat, is a risk associated with thyroid surgery and prolonged thyroid issues.
• For some inexplicable reason, my throat swelled shut immediately upon removing the thyroid.

Turns out, the stranger who told me I couldn't breathe was an ear, nose and throat specialist -- an Otolaryngologist. Yeah, really. He appeared in my room some time after our first unpleasant introduction and explained I would be intubated until noon the following day, at which point he would remove the tube, examine my vocal cords and determine whether they were functioning enough to maintain a sufficient airway. It seems the vocal nerve had indeed been damaged and my cords were now paralyzed in a semi-open/ semi-closed position: insufficiently clear for proper breathing, and insufficiently closed for safe eating or drinking without aspirating solids or liquids into my lungs. I couldn't talk, but I could surely text and status: it was time to get all my prayer warriors praying for noon the next day.

Nighttime turned out to be much worse. I had no concept of time, still I was trying to text people and explain what had happened -- and get them praying! I wound up texting my one friend at 3AM (It's a good thing she loves me). The tube in my throat was making me feel as if I couldn't breathe. They gave me a sedative to relieve my anxiety over suffocating to death, but it was causing drowsiness; as I slept, I would crimp the tube, setting off the alarm that monitored my breathing and bringing my poor nurse running. It was an endless cycle. I knew I was getting worked up, but waking up from a dead sleep (no pun intended) because you can't seem to fill your lungs is terrifying. Plus, it was causing me to sweat, making my incision sting; I was sure it was going to be infected. The tube irritated the back of my throat in addition to whatever pain or irritation the surgery had caused. It was going to be a very long night.

My Thyroid Story: Diagnosis (Part One of Four)

March 25th marks the one-year anniversary of my being diagnosed with Graves' Disease. In the months that followed, I learned I had thyroid cancer as well. But through all of the repetitive testing and unexpected procedures I found there were few sources which documented events specifically. I would have anticipated, in this enormous blogosphere of ours, at least two or three personal experiences with Graves' -- not so. Of course, I couldn't resist taking a crack at changing all that.

In December of 2013 I got one of those colds that just won't quit. As much as I hated to admit it, I was on the short run to age 50, and figured that was the reason I was finding it so hard to shake. By January, a persistent cough (Scott called it my "TB cough") had become just that -- persistent. My energy level still had not returned.

By February I had begun to notice, despite getting an eye exam and new glasses only weeks before, I was having trouble focusing, particularly in dimly lit areas, and it almost seemed as if a veil hung before my eyes, darkening and obscuring my vision. My contacts were uncomfortable for periods of time longer than a couple of hours, and my eyes always seemed to be dry or "picking." As those of us who maintain an irrational aversion to the hard-working, altruistic folks that call themselves medical professionals are wont to do, I put off seeing the doctor by attributing my vision issues to allergies. In addition to this I was itching uncontrollably ("dry skin" -- it was winter, after all), I had ridiculous hand tremors ("must be a temporary dietary thing"), heart palpitations ("stress"), difficulty breathing ("darn cold must've gone right to my chest") and I was having hot flashes like crazy ("The Change" -- I was actually excited about that!).

By March the shakes had gotten so bad I could barely recognize my own handwriting, and I was starting to notice a tremendous amount of muscle loss despite my continued workouts. The bouts of diarrhea and weight loss even though my appetite had increased, and my insatiable cravings for sugar, couldn't be anything too serious, right? After all, anything with side-effects that include extreme weight loss while binging on chocolate can't be all bad. But by this time Mr. Murphy had stepped in: "Call the doctor or I will."

Well, have you ever locked yourself in the bathroom, retching and heaving for six days, with the last ounce of strength left in your ravaged body dialed the doctor's number and with your dying breath made an appointment, only to find as you sat waiting in the examination room later on that afternoon, your temperature returned to normal, the snotworks honored the cease and desist order you'd given them days ago, and the doctor could find absolutely nothing wrong with you? Yeah, that didn't happen. The day I saw my NP -- to whom I owe my deepest thanks and my firstborn (Stacey, if you want him he's 24, he comes with a lovely wife and an enormous appetite) -- my legs had swollen to twice their normal size, and my blood pressure was through the roof. She sent me for a chest x-ray and, of course, blood work. "I think we could be dealing with a thyroid issue here."

When the test results came back, she had my diagnosis: Graves' Disease. Graves' is an autoimmune disorder which affects the thyroid, resulting I an overproduction of thyroid hormones, or hyperthyroidism, and can affect the eyes as well. My Nurse Practitioner sent me to a local Endocrinologist. This is where it gets a little ugly. Through an ultrasound completed in his office and a review of the blood work, he confirmed I had Graves'. He also discussed three options for treatment: drug therapy (Tapazole, aka Methimazole, a drug which would help to bring my thyroid hormones under control), RAI (radioactive iodine, an ablative treatment to destroy thyroid tissue, more or less removing the target for Graves' Disease), or a complete thyroidectomy. Drug therapy was of course, the least invasive and, based on my age and general health, probably my best option. He sent the script to the pharmacy and told me to schedule a three-month follow-up on my way out.

It was a beautiful warm, sunny day, so I ran a few errands, giving the pharmacy enough time to do their thing. By the time I got home with my cute little orange bottle of "quick fix" in my hand, I had a message on the answering machine: "DO NOT take the medicine! You must have more blood work. Have a nice day." Huh? Inquiring minds want to know, right? So I immediately fired up my Google machine to check the side effects. "This medication may rarely cause very serious blood disorders (such as a low number of red cells, white cells, and platelets), especially during the first few months of treatment." Less than an hour earlier I had been sitting across from this "specialist" discussing my previous issues with anemia. I called.

"I was just in the office. Dr. X diagnosed me with Graves' Disease and prescribed for me Tapazole. I got home from picking up the script to find a message from your office telling me not to take the medication, and to have more blood work."

"Yes, your blood work indicates your hemoglobin levels are extremely low: seven. You should not take the Tapazole."

"Ok...so when should I have my blood retested?"

"When did the doctor say he wanted to see you again?"

"Three months."

"Okaaaay, in three months, then." (Like. Duh.)

Now, I'm no doctor, but I do know that palpitations, high blood pressure, tremors, and extreme weight loss are probably not issues you wanna put on ice for the next three months (even though I'd been quite ready to do so before I found out I truly had something). And since they were progressing at a rate faster than tax day coming... (By that time, I had become so weak I couldn't even kneel to the bottom shelf in the grocery store without having to use the upper shelves to pull myself back up.) I started searching. Endocrinologists in Delaware County are few and far between, so even the other offices were too full to take on new patients, or couldn't see me for three months. I called my NP and explained the situation hoping she could pull some strings and get me in somewhere. Her nurse recommended an office in West Chester -- a bit of a hike, but at this point I was ready to go to the moon.

During my initial appointment, my new -- and wonderful! -- Endocrinologist reviewed the blood work done previously, confirmed the diagnosis, also determined the presence of at least one nodule on my thyroid, and discussed my history. Because of my issues with Tapazole, we moved on to discuss the possibility of RAI. This would require more blood work, this time targeting my T4 levels (elevated T4 during RAI could cause thyroid storm, a life-threatening condition). In the meantime, she prescribed Metoprolol and Potassium Iodide to control symptoms. You wanna talk about feeling like a new woman? Though some symptoms persisted, the medication took the edge off and lessened their impact on my life. My workouts, which had ceased shortly after my diagnosis were even somewhat possible again!

Test results, however, indicated RAI would not be possible, and my Endocrinologist recommended a surgeon. The surgeon saw me almost immediately, but would not consider surgery until she received satisfactory white and red blood cell counts. This delayed scheduling of my surgery for about three weeks as she and I worked with diet and I underwent a round of steroids to reduce the swelling in my thyroid.

In the meantime, she scheduled a CT Scan to sort of "get the lay of the land" before she started cutting into me. I appreciated that. The scan required no special preparation and took less than an hour from arrival to departure. At the hospital I changed into a gown, and dye was injected into my arm as contrast was required to highlight the "offending area." The scan itself was painless: a cushion behind my neck tilted my head back to expose the entire front of my neck, and I was not allowed to swallow while the actual scan was being performed (a period of only a few seconds).

D-Day came (Determination Day)! The CT pics and blood tests were back. Surgery was a go, and everything should be pretty routine from here on out!

Trying to See Heaven

A couple of Saturdays ago I had the privilege of spending the morning hours with some folks from our church. Robbie, a developmentally disabled man began to sing Christmas carols as we removed the Christmas decorations. And while it was a bit unusual, revisiting the messages of Hope and Peace in the birth of The King was something we all ought to do a little more often. He had an extensive repertoire of carols and was faultless in  their lyrics, singing out loud and strong. Sometimes I have a difficult time understanding Robbie when he speaks, but he must be terribly accustomed to it -- the minute he senses your confusion, he will spell the word out for clarification. He is in fact, an excellent reader. As we moved into the sanctuary to work, Robbie drew my attention to one of the stained glass windows. "Why did John die?" he asked. The glass, which depicted a scene from the Bible had nothing to do with John or John the Baptist, and for a split second I was befuddled. But just as I opened my mouth to question the origin of his thoughts, I saw the words: "In Memory of John ______." Robbie had already read the text, derived from it that John was no longer with us, and wondered about the cause, before I'd ever even noticed. People like Robbie tend to have such a unique way of seeing things: adult topics as viewed through the eyes of a child. It shouldn't, but it always surprise me. Robbie had spent a good portion of the morning asking questions:

"When is the trip to Linvilla Orchards?"

"When is the family reunion?"

"Are there beds in heaven?"

"Does heaven have jobs available?"

He conversed easily with anyone he could engage. Somewhere along the line his questions got me to thinking. About trips for the Youth this summer. And reunions where past members and friends of the church could enjoy a little agape and hospitality -- the delicious kind -- some Sunday morning. But most of all, about heaven. Robbie had inspired me, and I tried to see things his way. And while it was a less than theological approach I don't think I would be wrong in saying that Heaven will be far more breathtaking and sensational than anything we could imagine. Chiefly because God is there, of course, but when you consider the wonderful things He has gifted us with here on Earth, for it to be Heaven it has got to be even better!

For instance, one of my favorite things is afternoon just as Spring begins to break; lying in a field, feeling the warmth of the sun on my face with the cool of the ground on my back, staring up at the passing clouds, and taking in the sweet smell of fresh green grass coupled with the earthy fragrance of rich, dark topsoil. Or the sunrise in winter -- it's always better in winter -- after a cold, dark night; watching the ice crystals in the atmosphere cast what seem to be hundreds of shades of purples and yellows, oranges and reds across the sprawling sky; clouds rippling as they reflect the colors of the dawning day. Or later that same day: the clear blue sky holding up a big warm sun as chilly breezes move through my hair, nipping my ears, but the sun warms my face and my soul. Or the Autumnal aromas of apples and spices, the sound of leaves rustling in the trees or crunching in my hands; putting on a favorite sweater for the first time since Winter; rolling hill after rolling hill covered with brilliant orange, lustrous gold, and fiery red. Or the simple, crazy laughter of a child; or watching them dance. Or stepping out onto the back steps of Home with a giant mug of freshly brewed coffee and watching stars fall from the sky. Or finding that tiny spot at the top of my husband's neck, just beneath his jawbone which somehow seems to invite my face and snuggles it perfectly; or slipping my fingers between his as we walk alone. A library book. A crossword puzzle. My very own box of dark chocolates. Spending Saturday morning hanging out on Earth with people I will celebrate with later.

And somehow, Heaven will be better than all of this.

For a more theological discussion, see Randy Alcorn's website: http://www.epm.org/resources/2010/Feb/4/what-does-bible-say-about-heaven/ , or read his book, Heaven.