What it is like to undergo Radioactive Iodine Therapy.RAI and the isolation period are difficult times, but to what extent probably depends on your home and family situation. I live with my husband and two cats in a small apartment with one bed. This meant that both my husband and my cats had to leave for 6 days (separate bed minimum regulation). Yes, technically, he could have slept on the couch. Yes, the doctors tried to convince me that having cats is not the same thing as having small children and that the risk to them was significantly less. But neither of these things would have been very good for my peace of mind or household. Our couch sags in all the most inconvenient places, making even naps a semi-hazardous ordeal. Also, I do not trust the perspective of doctors on pet health. I’m not going to carry my cats around in a handbag or push them through the park in a stroller or dress them in tiny outfits, but they are members of my family and I’m not going to risk their thyroid health on any statement containing the word “probably.”
So point fingers where you will, I was completely alone during my ablation. When I was reading about others’ experiences with isolation, I was tempted by the idea of staying in a motel for a couple of days. However, some very wise people pointed out that this could endanger the housekeepers, especially the pregnant ones. As careful as you want to be and promise to be, it is hard to be vigilant about everything you are touching and every body fluid you secrete. A sneeze becomes something to fear; getting on an elevator becomes an ethical decision. Have you ever tried wearing rubber gloves for 24 hours? They become uncomfortable and inconvenient after a few minutes. So it is best to accept that you are not going to be as pristine or vigilant as you could hope for even in perfect health, and to follow the regulations as closely as possible.
RAI Day 0*: Infection
Sound like the title of an apocalyptic film? While the overall experience was not quite as sci-fi as I anticipated (no hazmat suits), I think this is as close as I’ll ever get to understanding what it would be like to be an untouchable. My perspective on self changed radically, unwillingly, and in a matter of minutes. I could not help but see myself as toxic, infected, dangerous. I had to keep reminding myself that it was only temporary.
The morning of ablation (process of receiving RAI), I was nervous, but ready for the whole thing to be over with. In the extreme stages of hypothyroidism, devoid of energy and desire, my body started to feel like a prison. I was simply waiting for the next step and the promised miracle drugs that would follow. There was also some confusion with the hospital staff that made me a little more impatient during the last stretch of waiting (I was initially promised a treatment on a holiday when no one was working).
In my hurry, I dressed for the outside weather (100’s) and not hospital temp (about -20 in hypo degrees). Hospitals are not terribly speedy or efficient. Dress warmly! I wore shorts, a t-shirt, and sandals and was shaking so visibly that they offered me a blanket. I would recommend long pants and close-toed shoes as minimum precautions. Most of the appointment felt very usual. Like usual, I got lost. Like usual, I went through patient registration. Like usual, I got lost again. They really ought to consider some kind of hospital escort service. Like usual, some kind staff member eventually led me to the right place. Like usual, I sat in a waiting room, reading, for about an hour.
Then a nice, young, very nervous-seeming doctor led me to an area. The area consisted of a door, a chair and a table and became a kind of room when he pulled a screen like a half-moon around us. For the next half-an-hour I sat reading in my new “private” waiting room, while he occasionally popped in and out of the door to ask me questions or hand me paperwork. He was quite thoughtful, constantly asking if I needed anything (including, thankfully, the blanket), but everything he said sounded like an apology. His words tripped over each other and his eyes slipped from ceiling to floor and back again. I wondered if he was socially awkward or just felt really sorry for me.
Eventually another older, habituated doctor came along to tell me matter-of-factly everything I had already read online about RAI treatments and precautions. Once I signed my life away (again), the nervous doctor led me to a room with a large yellow and red caution, radiation sign on it. The room itself looked like a storage closet. It was long and narrow, with some tables and junk piled at the back. At the front of the room, near the door, was a table with two bottles of water, three Oprah magazines, a telephone and a television on it. The doctor invited me to sit at this table while he retrieved the pills.
I very much expected a HAZMAT suit, but the only noticeable difference in his appearance when he returned was a pair of large rubber gloves. He was also carrying a heavy lead box, gray in color, which he set on the table in front of me. He then explained that one of the seemingly discarded “tables” in the room was actually a radiation screen. At this point, there was a kind of stooge-like miscommunication about who was to stand behind the screen. I confused him right out of his ability to speak by getting up and standing where he pointed. He explained to me that I was in his spot. We switched places and I opened the box. Inside were two plastic tubes, and inside these were three clear capsules filled with gray powder. I took the three pills with the water, closed the box and was told to wait another half-hour so they could monitor my reactions. During this time, nothing more exciting happened than the phone ringing. It rang four separate times, one ring each time, and I’m still a bit confused as to whether I was supposed to answer it or not (they had not warned me to anticipate calls).
Then I was released. No fanfare. No troops. No persons in HAZMAT suits escorting me to my car. And honestly, I didn’t feel any different. Chilled to the bone, but not different. I could feel the ice water sloshing around inside of me and the goosebumps pricking my skin, but physically, I did not feel radioactive.
Psychologically, I felt like a freak. I guess the lack of precautions should have clued me in that I was safe, at least for the ride home. But they ask you to drive yourself so you don’t endanger anyone else. How could I be sure that bumping into a small child in the lobby might not damage it? That years down the road, that kid wouldn’t have thyroid cancer because of me? And so suddenly, they were everywhere. Moms with strollers, kids with extended fingers, to-be moms with extended bellies. All too close. All unaware that I was a ticking toxic time-bomb whose sweat and saliva were like so many guns pointed at their children.
I must have been quite a sight, dodging and weaving, trying to stay three feet from everyone I passed. I even refused to take the first two elevators that came, because there were kids on both of them. I felt like a murderess simply handing my parking ticket and money to the garage toll collector. My husband has since informed me that it is unlikely the radiation could have absorbed into my bloodstream yet. That it was unlikely I could have harmed anyone. But still. In my mind, I was infected.
Not a lot changed over the course of that first day. I was told not to eat until 5pm, and having not been allowed to eat the rest of the day, my stomach was my biggest concern for the first few hours at home. After eating I was in and out of sleep, like usual. At most I might be able to say there was some tingling sensation, like when a limb falls asleep. But that could be the calcium deficiency.
In reality, most of the drama of the day had occurred in my head. Not sure what to recommend for that....
*According to my husband, a math guy, starting at Day 0 makes sense. Somehow it makes counting easier. So on Day 3 patients can be in the same room as others and that is better than them assuming that their 3 day no-people rule ends on the third day. Idk. To me it feels more like one of those 3 Stooges scenes where they say they are going to do something on the count of three but can't get it right. "Wait, on three or after three?"