The League of Extraordinary Patients
Radioactive isolation wasn’t exactly boring. It was sterile and stark, with absorbent squares of paper taped to the floor in places I might walk, chairs covered over with them, tables draped in them. We had a terrible storm while I was in there, which may (or may not) be the reason for the terrible headache I got that just would not go away.
I arrived Thursday evening, earlier than they expected. Technically you don’t have to be in before 9, but I was exhausted and my parents had an hour drive back home to contend with, so I arrived at about 6:30. The room was a little frightening in it’s utilitarianness. Somehow this seemed less like a spa and more like…I’m not sure. Like entering a leper house, perhaps? Something where your contagiousness dominates so completely that anything else is constantly secondary. My parents must have felt it too, because they both hugged me before they left. They only do that when they don’t expect to see me for months at a time. I got a little weepy. I felt very scared and very sad and very alone. That first night I slept very fitfully, and some man from the ward kept wandering into my room. Three times between 11pm and 2:30am. That was a bit off-putting.
Things I needed to do: bathe at least twice daily, change the sheets and my hospital gown each time I did; never ever touch the floor barefoot; flush the toilet 3 times every time I used it; wash my hands religiously; rince out all food containers and put them in a garbage container that would stay in the room with me the entire time, just so that I didn’t have rotty food smells drifting over me while I was there.
Bleary-eyed but in a more positive frame of mind, I got the dose on Friday morning, and they opted to give me only one pill rather than the anticipated two; only 105 millicuries of radiation. (I found it strangely comforting that they measure in Curies; I had a lovely book about Marie Curie as a child, and the doseage reminded me of it.) This reminded me that I am one of the lucky ones whose cancer is not expected to have spread, so that greatly reassured me. The pill itself was kept in a little radioactive-safe container, like something out of James Bond. They watched me take it, I suppose in case I changed my mind, and then left me for a few hours. I felt nothing at all, no nausea, no pain, nothing. Then a nuclear medicine technician came back with a geiger counter to see how I was doing. “Perfect,” she said, and then she left. She was the last person to enter the room before Monday morning. I was in a pretty good frame of mind by then. Everyone had been extremely friendly and helpful, and I was told that because I’m on such a low dose, those rules pasted on the wall (the YOU MUSTs and the PLEASE DOs) only really applied if I felt like it. She told me I could change the sheets “if you need something to do.” I felt bathed in grace and thankfulness that I was in the optional camp and not the “we are genuinely scared of you” camp. I guess that’s what so put me off, I felt like I was becoming some kind of biological weapon, and everyone knew it.
The first day was good. Mostly I just read a book, but I watched some tv in the evening. I felt absolutely fine and very positive about the experience. My earlier fear abated. Nurses knocked on the door and left things on a table for me, and I would open the door and pick it up. Once, a nurse actually poked her head in to see me, but mostly I didn’t see anyone. They would call a few times a day to see how I was doing and if I needed anything, and without fail they called me “sweetie” or “honey”. Given that I had no direct contact with other people, I actually quite liked this.
The second day, the storm started, and my head and eyes started to ache. I slept well but woke up feeling exhausted and uncomfortable. I ate the little breakfast they gave me and went right back to sleep until noon. I felt a little better in the afternoon and read for a while, but by evening I had put in two calls for tylenol and felt a little rough. I was awake for no more than 10 hours that day.
I had an important realization at this time. The ward where I was staying was not, as I thought, a generic “place where sick people are”. I don’t know why I even thought such a place existed. I was on the oncology ward. Well of course I was, right? Where else would I be? But somehow, this just struck me like nothing else had. No wonder everyone was calling me “honey” and “sweetie”. I came in with braids in my hair flanked by my parents. I was clearly the youngest person in the ward by about 20 or 30 years. And it put my room into perspective pretty damn fast: this wasn’t just a room for people undergoing radioiodine treatment. You can get radioiodine treatment for a few different things, including hyperthyroidism. This was a room for people 4 weeks out of a total thyroidectomy aurgery whose pathology had come back “carcinoma”. Everyone in this room spends 4 nights and 3 days, pacing in the same way, flushing the toilet the requisite three times a zillion times a day, drinking tons of water to keep the radiation moving quickly out of their kidneys and bladders. How similar we all are, how rigidly similar our experiences would be. I felt like a piece on an assembly line; I felt kinship. It made the process both easier (I’m one of the lucky ones, remember) and harder (my membership in the league all the more defined and definite).
The third day started much as the second one did, with a desire to go right back to sleep, which I did. But this time, when lunch rolled around, I felt a wave of nausea. Nausea is a common symptom of radiation, but it’s usually after you take the pill. I didn’t actually throw up, but when lunch arrived (pasta) the smell of it threatened to push me into the absorbent-sheet coated bathroom for fear of bringing up all over my sterile room. I wished I hadn’t brought it in; now that it was in the room, I had to deal with it myself. I left it sealed up in its microwaveable glory and pushed it into the farthest corner of the room. My legs ached, my head was pounding, my eyes were sore, and my stomach was…touchy. I made an early call for more tylenol and tried to take it easy. The nausea passed, but I still never entirely trusted my stomach. I ate the dinner they gave me (shepard’s pie with green beans), but I didn’t entirely feel confident in my belly again.
I bathed fairly regularly through out this. I would split up bathing chores; once, just wash self; another time, wash hair. I brought in a salt scrub and took my time scrubbing my elbows, my feet, my legs, my knees. My hands were getting dry with all the constant washing, so I spent some time scrubbing them too. It was soothing, and made me feel somewhat less plague-ridden.
And I woke up on the fourth day, ready to push back the stone in front of the tomb and walk away with the story of my time in this unique and quiet little hell. I didn’t get bored, no, not as such. It was neither as easy nor as difficult as I expected.