This month, A Beautiful Perspective is exploring touch in all its forms and contexts. Click here to read more stories from the TOUCH Issue.
It didn’t necessarily feel like much of anything, but I knew that I had to be alone.
I removed the tiny white pill from a metal capsule the size of an eyeglass case. It could have been anything. I couldn’t touch it. I would be contaminated. The second I swallowed it, the two doctors stepped back. I was officially dangerous to them.
For three days after taking the pill I couldn’t be within six feet of any person. I couldn’t share utensils or cups. I had to be very diligent about cleaning the bathroom. My trash had to be separated for six weeks before throwing it away. And I definitely couldn’t touch anyone.
This is how radioactive iodine therapy begins.
I’m a bit embarrassed to admit that I didn’t even know where my thyroid was the first time I went to the endocrinologist. For about a year I had been struggling with a host of symptoms, including intense fatigue, nausea and vomiting, full body aches, and collapsing episodes. I had to quit my retail job because my body couldn’t take the physical stress of standing for eight hours at a time, and I had been driving regularly to a city an hour and a half away to see specialists in chronic illness.
One of these specialists discovered my thyroid antibody levels were rather high, but insisted there was nothing to worry about. My primary care doctor felt the same. It took a good amount of crying in his office to get him to refer me to an endocrinologist, a doctor who specializes in hormones.
She found some nodules on my thyroid, but assured me it was nothing to worry about. They had to be biopsied simply because of their size.
A few weeks later, she called to tell me I had thyroid cancer.
I still find myself reveling in the treatment’s simplicity. Your thyroid cells are the only ones that absorb iodine. By taking a radioactive iodine pill, your thyroid cells absorb the radiation and die off. Simple. Elegant even.
Of course, this was after a full thyroidectomy and the removal of many lymph nodes, including one where the cancer had already spread. Although my thyroid was long gone, lingering thyroid cells could still potentially carry the disease. They all had to go.
The two doctors stepped back. I was officially dangerous to them.
When you go through radioactive iodine therapy, your body gives off radiation for a period of time depending on the dose of your treatment. Hence, the three days of isolation and intense hygiene habits. I also had to be on a low-iodine diet for about two and a half weeks before the dose, which meant eating only fresh fruit, fresh vegetables, never-frozen meat, and jasmine rice.
The diet was a constant reminder both of the cancer and the treatment to come. But even without the diet, I couldn’t have forgotten what was happening. It was all I could think about.
I left the hospital as quickly as I could, panicked about exposing vulnerable patients to radiation. When I got back to my apartment I passed my roommates and went to my room, shut the door, and sat down on my bed. Then I waited.
Sitting alone in my room had become familiar long before the treatment. Each day that I continued feeling sick, I felt more and more isolated. After one month of symptoms, friends, family and co-workers remained sympathetic. But after four, six, eight months … as my symptoms persisted my world shrank. Fewer people reached out, my boss had no sympathy, my doctors grew tired of my calls.
By the time I dosed myself with radioactive iodine, so many people had already stepped away, that the isolation just felt like an extension of what had started months ago.
I kept thinking about what many of the doctors had said: that it’s possible my symptoms weren’t caused by the cancer, that they might remain after the treatment was over. I wondered whether the end of my treatment would mean the end of others’ patience with me. I wondered if this was really the beginning of my isolation, instead of the end.
The stakes felt high during those three lonely days. Leading up to the treatment, people around me not only assumed my ordeal was about to be over, they let me know how relieved they were about my diagnosis.
“I definitely pulled away from you during that time, before you got your diagnosis,” one close friend told me. “Once you knew what was happening, you had a much better attitude.”
“I mean, you used to be a bit high strung, if you don’t mind my saying so,” a supervisor told me, “but, now that you know what it is, you’re so much more … chill, is the word.”
I sat in my room for three days and replayed these conversations. I wondered if my absence would comfort the people around me, give them space for all that was happening. I wondered what was going to happen once it was over.
I turned to the internet, my primary companion. I started revisiting chronically ill artists, who I had followed after a previous misdiagnosis. They would write articles and blogs about their pain, create artworks of their experiences, and craft messages of solidarity on their social media. Even after the doctors warned that the chronic fatigue may follow me forever and even after I was diagnosed with an autoimmune disease, I still didn’t view myself as worthy of taking up space in these artists’ world. I was afraid that whatever was happening to me was not included, that I was some special case.
But they were the ones who showed me the most compassion. During my three radioactive days, I poured over stories about the times they couldn’t get out of bed, about the doctors who refused to believe them, about the people in their lives growing tired of their illness.
Their stories touched me. And suddenly I wasn’t alone anymore.