Wednesday, April 29, 2015

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...