When I get home from the hospital, Ryan doesn't walk me up to my apartment. In fact, my nervous friend makes me ride home in the back of his Jeep. On a tarp. He's worried he'll catch it, and I don't blame him. The odd part is: it isn't my disease that's contagious—it's the cure.
I've just ingested 15.1 microcuries of I-131, a radioactive isotope of iodine. It doesn't sound like much, but it's enough. And it has a half-life of eight days. So for the next five days I have to stay locked in my apartment, away from other people while it weakens to a harmless level. The radiation in my body could kill a person's thyroid gland if they come within ten feet of me, or come in contact with my saliva or sweat. Of course, it will ruin my thyroid gland as well. But this is exactly what it's meant to do.
Once inside my apartment, I take inventory of my stock: cereal, Easy Mac, frozen meals, canned soup, popsicles and sour hard candy for when my throat gets sore, plastic silverware and plates, towels to put on the sofa so I don't contaminate it, a stack of DVDs—mostly comedies—some books I've been meaning to read, and an eight-bit Nintendo system circa 1985—a last minute "good luck" gift from my younger sister.
Looking at everything, I feel ready. I share the apartment with my older sister, but she's made other arrangements for the week and I promised her that I won't get my sweat on the furniture. I spend the first day waiting for something to happen, and trying not to think about how small the apartment is.
My doctors and my Thyroid for Dummies book tell me how sick the radioactive iodine (RAI) can make a person. My first thought upon waking up this morning is Oh. There it is. I feel all of the symptoms I've been experiencing on and off for years, only amplified.
When I was finally diagnosed with Graves' disease, a disorder in which the body's immune system attacks the thyroid gland, I'd first been misdiagnosed with a heaping handful of other minor ailments. I was already taking salt tablets for dizziness, which my primary care doctor blamed on low blood pressure. I drank aloe juice for what she labeled "Irritable bowel syndrome." My gynecologist prescribed birth control pills to even out my periods. I was told to stop napping and quit caffeine when I complained of insomnia. I'd worn a Holter monitor for heart palpitations, but the case was closed when the ER doctor found no genetic defect in my ultrasound. And I'd three times refused counseling for what all three doctors assumed was an eating disorder when, year after year, my weight on the scale balanced the little black counterweight at just over one hundred pounds. These symptoms are all indicative of Graves' disease, but no one put all the pieces together. And I never pushed things; I was too afraid of being labeled as a "high maintenance" patient.
The gentleman who found the irregularity in my blood work was a sleep therapist—in many ways, the least qualified of the bunch to catch the disease. When I went to him about my vivid dreams, he offered a partial diagnosis of Confusional Arousal Disorder and (finally!) a complete blood count. When my labs came back, there was enough thyroid hormone in my system for someone three times my size. He quickly referred me to an endocrinologist to determine the underlying cause.
I spend most of day two rolling around on the sofa trying to find a position that won't make me nauseas. I want to sleep, but I feel wired. I'm sweating a lot, but I am careful to stay on the towels. I take my temperature every hour on the hour. It holds steady around ninety-nine. If it climbs over one hundred, I have to go to the emergency room right away (human contact be damned!) as it could be a sign of a life-threatening "thyroid storm."
The thyroid gland, located in the front of the throat, basically runs the body's metabolism. Having hyperthyroidism (the technical name for an overactive thyroid gland) is like having the volume dial on the body turned to high. Patients with hyperthyroidism can't sleep, have quick heartbeats, eat all the time and still lose weight, have frequent bowel movements and irregular periods, sweat a lot, often have oily hair and skin, fast-growing hair and nails, and superhero-style reflexes. "Thyroid storm" is when the gland dumps a large amount of hormone into the body as a response to the radioactive iodine. If these levels get too high, and the heartbeat gets too fast, it can cause a fatal heart attack.
On day three I feel better. I watch the clock for the first half of the day. Once I hit the forty-eight-hour mark, I can start pushing fluids to chase this stuff out of my body. Every time I pee, I am supposed to flush the toilet twice.
My friends send funny e-mails predicting what my superpowers will be after radiation exposure. I write back: So far? The power to be the sickest I've ever been. I am trying to be funny, but at the same time, I am not joking.
Things got serious for me at the hospital where I received my treatment. Ryan stayed for the four-hour ordeal. Any woman who hasn't had a complete hysterectomy must undergo a blood-serum pregnancy test within twenty-four hours of RAI to make sure she isn't pregnant. I hadn't had sex in more than ten months, but was still nervous waiting for the results. They took three hours, during which my mood went from jubilantly anxious to nearly freaking out. When the doctor finally came in to announce that I'm not pregnant, Ryan made an exaggerated gesture of relief to get me to laugh. I did, and so did the doctor.
Dr. Robin took me into a separate room to ingest the iodine. The room was marked "Biohazard" and he typed in an entry code on a keypad to open the door. Inside was what looked like a thirty-gallon aquarium with a thermos inside. He gave me a pair of latex gloves to wear and put a much heavier pair on his own hands. He cracked open the front face of the aquarium and unscrewed the lid of the thermos with a foot-and-a-half-long grabber.
"O.K.," he said. "I'm going behind that lead screen." He gestured to a three-panel screen with a small glass window. "When I'm behind it, open the bottle and take the pills inside. Then, throw your water cup in the biohazard bin. Turn your gloves inside out and throw them in the bin as well."
I felt like E.T. at the end of the movie. "Is this safe?" I asked.
"It's safe for you."
For lunch I make soup, something gentle for my tender belly. I am careful to only use plastic spoons to stir. I throw them away after tasting. The doctor explains it like this: If you put the spoon in your mouth, you contaminate the spoon. If you put that spoon back in the pot, you contaminate the pot. If you put that pot in the dishwasher, you contaminate every dish you wash that pot with. Soap doesn't kill radiation. Throw away anything you eat with. When the soup is ready, I realize I've forgotten to get plastic bowls. I think about eating it with a series of plastic spoons, a new one for each bite. I try to do the math: How many bites equals how many spoons? How many remaining spoons divided by the number of remaining days? In the end, I throw the soup away.
The boredom sets in. I have beaten the first five levels of Super Mario Brothers seven times. I cannot get any farther. In a cruel twist of fate, my Internet connection breaks and, of course, I can't have a technician come into the apartment. Ryan stops by for an hour and we have a conversation sitting twelve feet apart on my apartment stairs. As we talk, I can feel my throat tightening up. The thyroid gland shrinks and hardens as it dies. I am very aware of my throat. I remember the doctor testing me with a Geiger counter before I left the hospital to make sure I'd taken the radioactive pills instead of pocketing them. When the wand rose to my throat, it emitted an uneven high-pitched beeping sound. I imagine I can feel the radiation in my gland, and it's starting to hurt.
I tell Ryan, I don't think I can talk anymore. Before he leaves, he offers to stop at the store for me, but I turn him down despite my glaring need for bowls. I tell him I'm fine. I've got everything I need.
After all of my tests (blood counts, iodine uptakes, thyroid scans) I was actually excited to hear the results. I spent years bouncing from doctor to doctor with plenty of symptoms but no real resolution. I was told stress was to blame for most of it, that my problems were in my head. For a long time, they had me convinced. I thought of myself as a complainer, a hypochondriac. Now I know I should have pushed harder, made them listen. But even with independent confirmation that something is really wrong, I have trouble talking about it. I refuse to ask for help. I play it down. It is easier to treat the RAI as a joke than a serious medical procedure.
While I am talking to Ryan, I am desperate for some sympathy. Instead of making that clear, I encourage him to laugh about it. I act like it's no big deal. I am very convincing. I almost convince myself.
But when Ryan leaves I am alone again in my eight-by-twelve-foot living room. I've already blown through all the movies I had lined up. The Internet is still down. I want to call someone and ask them to just talk to me, but the pain in my throat would keep me from talking back. For the first time, I truly feel quarantined. And I can't blame it all on the radiation.
The thyroid gland, like most of the endocrine system, is one of those things you never think about until it acts up. Most people I talk to don't even know what it is. When I explained the goal of the RAI to my older sister she said, Do you even need your thyroid? Or is it like your appendix? I can't blame her. I had never heard of Graves' disease until I was diagnosed with it. When it was finally time for the test results, I thought I was about to get an answer to the years of questions I was too afraid to ask more than once. But when the doctor told me what it was, I didn't have a moment of relief before my head filled with questions again.
I've labeled today Freedom Day. My friends and I plan to go out for milkshakes (easy on the throat) and see a movie (talking is still painful). I spend the whole morning cleaning. I wash my sheets and clothes in hot water, I scrub the bathroom down with diluted bleach. This is all on the doctor's advice, though his original words (Soap doesn't kill radiation) still ring in my ears. I can't leave until three, so I spend an hour showering in hot water, shaving my legs, washing my hair. I spend an hour fixing my hair and an hour applying makeup. I look way too overdone for an early movie, but after five days of pajamas and infrequent showers, I can't help but dress up a little.
I have a four-week break before my next doctor's appointment while the radiation continues to work its magic. After that, I know I'll enter the new nightmare of trying to hit a balance with my thyroid replacement medication. Too low, too high; it's all trial and error until the blood work comes back within the normal range. But this process has taught me that I need to speak up more, ask for help, allow myself to be vulnerable. People need to know when something's not right. Now I've decided that if I have a problem, I will be the world's most high maintenance patient until it is fixed. I am done letting people tell me something is in my head when I know it's in my body.
The buzzer rings in my apartment. My friends are here to spring me from this place. I know that we will go out and laugh and joke about my latest five days. I want to tell them what it was like, what the whole experience has really been like. But when I get downstairs, I am too sore to say anything but a squeaky, I'm free!
Fortunately, this kind of silence is only temporary. Once my throat is healed, I will speak. I will tell everybody. And I won't stop talking until every one of them can hear me.
Title graphic: "I Hazard" Copyright © The Summerset Review, Inc. 2009.