My latest paincation was intense and it was made more so by the experience of radiation. Now, like most things in this disease I was fortunate: only five consecutive days and maybe twenty minutes of my time each day. But the experience was surreal and it set off emotions and reactions that have left a permanent impression on my psyche.
I was anxious to get radiation to kill that tumor in L4. It was causing me unrelenting and intractable pain. And though the narcotics helped to get me through that pain, the side effects on my bowel health were too burdensome, painful, and frankly embarrassing. I was excited when I went for my first visit to get things set up. And, frankly, the first treatment was unremarkable.
Except for the machine.
On my first day I was escorted to the room and I met Varian, the machine with which I would be acquainted for the week. Right from the beginning this machine had a personality that filled the room. Had it been human, the machine would have made a fine model for a villainous character on Law & Order.
The machine was fat, a dull gray, and possessed no trace of a sense of humor. Its head emerged from the machine and looked down with one big eye. Right away the relationship was one of power–and I didn’t have it. I was escorted to and laid flat on the table. The technicians lined up the tiny dot tattoos on my skin with lasers, got me in perfect position, and then they left the room. Lie perfectly still, I was told. It was just me and the machine.
Without warning the machine came alive. Two arms emerged and expanded from the machine. One arm came out from overhead, its terminal end looked like an industrial street lamp with black coils in its center. Its stare was ominous and I wondered what purpose those black coils filled. Opposite this arm another emerged and expanded, this one ended in a flat panel. Though it was controlled remotely, in this room all alone the machine seemed to move under its own power. My eyes darted from side to side and I strained to take in as much peripheral vision as possible. What was happening? Clicks and the strained sound of machinery in motion were heard and, just as soon as they had emerged from the core of the machine, they retracted. I was not sure what had just happened. But the machine had come alive and this disturbed me.
Once the arms were tucked in, the machine turned and I saw its gold eye staring down at me. Inside the eye an iris of sorts; a curtain that was tightly closed then precisely parted in the center to create an irregular shape. This must be the shape of the tumor, I thought. It was through this eye that the tumor and the eye would communicate. Only it was a one way communication. A loud industrial drone was heard that lasted 20 seconds.
ERRRRRRRRRRRRRRRRRRRRRRRR. Radiation had just been projected through my body and I didn’t know how to feel. I looked around the room. Quiet. Cold. The eye circled around my body and was just out of my view. I heard the gold eye disc turning and clicking into place. I closed my eyes and saw mushroom clouds, people burned, silhouettes of ash. Wait. Don’t be ridiculous, I thought. This is not the same kind of radiation.
ERRRRRRRRRRRRRRRRRRRRRRRR. Twelve seconds this time. It rotated again, and twice more. Each time the fine tuning of the disc punctuated at the end by the drone of the machine and the radiation that bombarded one area of my body. Then suddenly there were two technicians in the room. “That wasn’t so bad, was it? See you tomorrow!”
No, it was bad. I just had a barrage of radiation launched into my body. Controlled, precise, and planned by experts in their discipline, but radiation nonetheless. Don’t you get it? What was happening to the tumor? Do cells scream? How many had been killed on the first zap? How many others were dying with burns and pain? What exactly was happening inside my body?
The second day was the same. The machine’s arms emerged from its central core and encircled me, the iris assumed its shape, the eye disc turned and clicked into position, and then ERRRRRRRRRRRRRRRRRRRRRRRR. It was like a horn of doom. Over and over. Five times. “You’re doing great! It’s not so bad!” I wanted to smack her. Day three replicated the previous two.
On the following day I could not lift my head from the pillow. It was all I could do to consciously arise and see to the well being of my feline companions. I slept and slept. All day and all night. Exhaustion from the treatment, I surmised. My physician said that this may happen. I tried to call the center to tell them I was unable to keep my appointment and I could not find the number; I called another and asked to have the message relayed to the technicians. One hour after my scheduled appointment the telephone rang: “Hello, Ms. Barrington. Where are you?” I explained that I tried to call and that I was unable to move. Every cell in my body was hit was exhaustion. “Oh, I don’t think so,” said the patronizing voice. “You shouldn’t feel anything like this until after treatment! See you tomorrow!” Click! I couldn’t even respond. What a patronizing bitch.
Day four I started to feel it: anxiety. I didn’t want to go. I didn’t want to sit under that machine again. That machine with the arms and the weird eye with the iris. I didn’t want to listen to that drone of doom or have that bitch tell me that everything I perceived was not real in her condescending sing-song manner.
My radiation oncologist prepared me well for symptoms, even if she thought that the chances were slim that I would experience them. The most obvious was nausea; because of the location it was unlikely that I would experience nausea, but if I did I was to tell the technician. The night before day four I had nausea. I didn’t think it was serious, frankly, but I followed instructions and told the technician before my treatment. “I don’t think you did,” she said. “Patient’s come in all of the time and tell us about symptoms they don’t actually have.”
“Did you ever have radiation,” I asked? “No, I have not,” she answered. “Then how about when a patient tells you what they feel you cut the patronizing know-it-all bullshit, treat them with respect, and consider that what we tell you might actually be true. What do any of us gain by lying about it?” Speechless, the technician passive-aggressively went through the motions. The machine was as imposing as ever and I was even more wary–of both the machine and now that one technician.
Having missed a day, I returned to my last treatment on Monday. I was anxious about it, but I dutifully went. A different technician this time; a kind young man who was professional and empathetic. I met him before and liked him a lot. The machine came alive for the last time. Its arms unfolding and stretching ominously. The eye and its adjusting iris and the rotation and clicks as it determined the precise angle then shot radiation through my body five times.
When I left I had trouble reconciling the two sides of radiation: supervised death of human and animal populations and supervised cell death. Abruptly, I dropped off the grid. My blog and all of its associated social media went quiet. A week or so later I visited family, but the skin on my back was still warm and the thought of radiation in my body obsessed me. I browsed through old photos of me and my friends swimming on Florida’s Gulf Coast. I wondered aloud why we couldn’t all go back thirty years to youth and health. When I boarded the bus to return home, I had no idea what would manifest once I arrived home.
By the time I arrived in the New York City Port Authority my brain felt like an omellette; I couldn’t separate logic from fear. It felt like the city was closing in on me. During the ride home I grew increasingly convinced that I would die in the taxi before I arrived home. Everything felt alien and uncomfortable–even my home. It made no sense and I wondered what was happening to me. As joyous as I was to see my feline companions–and them me–I didn’t want to be home. Something wasn’t right; I am always happy to be home. On sight of a pile of mail I started crying. I didn’t unpack. I was unable to eat. This wasn’t anything like that panic attack last December that was over in two hours or so. I saw no end to this. Every exhale was accompanied by a pitiful verbalization or manifested as a heavy sigh. I couldn’t get out of bed. Every sound, every smell, and every texture was repulsive to me. I was useless. Paralyzed.
Finally at wits end, I called my psychiatrist in a sobbing hulk of uselessness. Afraid to leave the house and travel, my friend Iris came to hold my hand and accompany me to his office. Face-to-face I cried and wailed, not understanding who this person was. I regretted everything, and for the very first time in the year since I was diagnosed with breast cancer I asked why. Why did this happen to me? I was powerless and felt as if I was falling off the edge of sanity.
Three hours later I experienced medical intervention with Xanax. I never took it before and even with these horrific symptoms I wanted to resist. I had enough of drugs, I said. But a little window of logic opened and I realized that I had no other choice. My friend stayed with me until I could no longer keep my eyes open and I fell into a relieved, quiet, and hopeful sleep.
It took two days to feel completely whole, but a positive change was felt and I once again could think rationally and look forward to the future. Suddenly I couldn’t wait to return to the office, to be with my friends, and to enjoy and embrace life. I was back to my normal self and I only wanted to look forward.
One of our community’s mutual friends, Nancy Schneider, calls cancer a total mind fuck. And, honestly, there is no other way to see it. Over the past year I have seen disease appear, disappear, grow, reduce, and die. I’ve experienced intractable pain, seen my career affected, my finances hit, learned the deep value of friends and family, and I am learning to live in the moment–not just in the present.
This is a test I can’t win on a level playing field. The only thing I can do is cheat with the help of my physicians, learn to bypass crises, and know that regardless of the chaos inside I am a strong and ever-resilient woman who is prepared to stay ahead of this sick game known as breast cancer for as long as it feels right. Were that this was only a fictional game that took place in a fictional classroom and not inside my body and mind. Kobayashi Maru, indeed.