The first time I was hospitalised after my diagnosis — 10 months ago — I was placed in isolation in a drab room where the windows didn’t open. An electronic bracelet was strapped to my wrist, and I was issued a backless hospital gown. A triple-lumen catheter was surgically implanted in my chest to create a central line through which chemotherapy and fluids would be administered. I was all tied up, with both limbs connected to a monitor holding a ring of hanging IV bags.
I dubbed this moment my “incanceration.”
I couldn’t help but feel a bit like an inmate shackled to the schedule of the outside world. I remember guiltily feeling envious, and eventually somewhat resentful, of my visitors when they left my room. “I’m taking a break, and I’ll be back soon,” a nurse would say. I could understand this, but it also made me angry. I, too, desperately needed a break.Over the course of the next 5 weeks, I would have a lot of time to reflect on the hospital experience. Cancer has a way of issuing patients a sudden ticket to the world of otherness. As the chemotherapy took effect, and I Iost my hair, I looked different, I felt different and I even sounded different, as I dragged the beeping monitor with me everywhere I went. For a while I referred to it as “my little friend,” because he never left my side.
The escape fantasies began soon after. When I lost enough weight that I could slip off my electronic hospital bracelet, Lake Washington taunted me from my window. I plotted my escape and dreamed about stepping outside and standing in the rain — even if just for a minute. Fresh air is an amusement ride in the imagination of someone who has been in the hospital for an extended stay.
One day, as I was being wheeled out of the oncology ward for an emergency CT scan, I asked the man pushing my bed what would happen if I tried to escape from the hospital. He laughed but then gave me a serious look and said: “You’ll be in big trouble. Your bracelet will set off an alarm, and the guards will have to come looking for you.”
Finally, on a day when I was feeling relatively stable, I attempted to go through with my plan. I hid my electronic bracelet under my pillow and told the nurse I was going for a short walk. I made it as far as the cafeteria on the ground floor. Then I froze. It was lunchtime, and people swarmed around me, brushing and bumping me. My anxiety mounted as I thought of all the germs in the air. I was having trouble breathing. What if I fell? What if I fainted? Within a few minutes I had returned to my room. Beep, beep. My little friend chirped. Strangely, I felt safe again.
To a cancer patient, the lexicon of the prisoner seems to scream out from everywhere. Your movement is monitored. Decisions as basic as what and when to eat require preapproval from a higher order. Not to mention that chemotherapy feels like a semilethal punishment. The medical staff plays the judge. At any moment, your doctor can issue a sentence: probation, house arrest, extended time in “jail” and, for some, even death row. I’ve never had to appear in court, but I imagine the adrenaline pumps the way it does before a doctor reads your biopsy results.
In retrospect, inventing the term “incanceration” to describe my new diagnosis reflected just how confused, scared and isolated I felt. It’s not that the hospital and my doctors were bad. Far from it. I knew they were the very best, and I felt a deep sense of respect and appreciation for them. But on an irrational level, I also felt wronged by those whom I saw as having “poisoned” me (medical workers who administered the chemotherapy) and by those who encouraged me (family and friends) to think positively. Finding the silver lining sometimes felt like part of the punishment.
I remember asking my favorite nurse, “Why would you ever want to work in an oncology ward?” My question was part curiosity, part self-pity. At that moment, it seemed inconceivable to me that someone would elect to be here.
My nurse told me that she once worked in the spinal cord injury unit, but that after a few months, she couldn’t handle the emotional toll it took on her. She transferred to oncology. “You mean there’s a place worse than here?” I asked. She described the patients who come in (often around my age) and wake up in a hospital bed only to discover that they are paralyzed from the neck down.
I felt ashamed that I had forgotten that I wasn’t the only one whose life had been interrupted by misfortune. I remembered how lucky I was that a cure was even an option for me. That day, as I dragged myself out of bed to go for a walk, I luxuriated in the movement of my legs and the in and out of my breath.
Could I begin to see the hospital not as a prison, but instead as a place of healing that was at times punishing? Could I learn to view my doctors not as judges but as gatekeepers to a long and complex healing process? This much I knew: I was lucky to have my family, friends and a dedicated medical team in my corner.
Still, every time I think I have come to peace with my reality, a new bump in my medical journey can quickly undo any fledgling resolve. But instead of listing all the ways in which having cancer has obstructed my freedom, I am challenging myself to think of cancer as my guru. To remind myself of all I have learned this past year. It’s hard, but I’m trying.