Tuesday, March 17, 2015

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.

Monday, March 16, 2015

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."

Ok, 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!