Bring on the Burn: Radiation Preparation
While preparing for radiation, the only thing I knew about it was that people die from over-exposure. How could something so lethal become a critical part of saving my life? I had to trust the experts but walking into the room where a monstrous machine waited to deliver a searing burn made me wary, as though I’d been invited into the den of a hibernating bear.
No matter how well chemo worked, radiation is mandatory for patients diagnosed with Inflammatory Breast Cancer (IBC). As the third leg of trimodal treatment (chemo and surgery are the other two), beginning about eight months after diagnosis, it represents the final chapter of what is considered active cancer treatment. If chemo completely or mostly cleared the cancer, radiation seals the deal. For those with residual cancer after chemo, radiation acts as the clean-up crew. I have experienced both categories, undergoing 33 rounds of radiation for my first diagnosis and 42 rounds for the second.
The radiation oncology team develops a precise plan to attack any remaining cancer cells before they migrate to other parts of the body and manufacture more serious trouble. Because these cells are not visible on a scan, teams are the equivalent of high-end designers, directing radiation beams to focus on areas most likely to produce more cancer. Medical physicists, the silent partners whom we patients never meet, play a crucial role in developing our treatment plans. I frequently interacted with radiation oncologists, nurses and techs but never once met a physicist. I often wondered about how they chose their profession because I’ve never heard a child dream of a future as a medical physicist. Quite the niche career, indeed.
Women with IBC typically begin radiation about 4-6 weeks after mastectomy and two conditions must be met. First, the drains must come out. Everyone departs surgery with drains, a plastic tube and bulb combo protruding from the abdomen, which off-load fluid to prevent it from pooling in the surgical area. Most women wear drains for 7-14 days after surgery but, after my first mastectomy, one of mine stayed put for an interminable 36 days. Radiation planning stalled while we waited for fluid to stop draining, causing frustration on all sides. Eager to get started, the radiation oncologist became impatient while I had to rearrange flights and other travel plans. Try explaining to the airlines the need to change a flight due to a Jackson-Pratt drain that continually fills with fluid. At long last, the fluid output dropped to an acceptable level, a nurse snipped the stitches that held the tube in place, and the drain was mercifully extracted.
Patients must also be able to stretch the arm above the head on the affected side of the body. Most of us find this difficult after mastectomy, and preparation is a conundrum because we are told not to elevate our arms while drains remain in place. Once the drains are removed, stretching begins in earnest. It’s a classic case of wait, wait and then hurry up.
Before radiation officially gets underway, patients undergo simulation with a CT scan that maps out exactly where the radiation doses will be delivered. Simulation determines our exact position on the radiation machine and produces a mold that is thereafter stored in the radiation area and utilized at every appointment. The mold cradles the arm and prevents the head from moving while we lie inert on the machine for long periods of time. Typical of women with IBC, each of my radiation sessions required 30-40 minutes on the machine, during which time I could not so much as scratch my nose. Women whose plans include radiation directed at the neck usually wear masks over their faces, which are then secured to the radiation table, to ensure immobility during treatment.
At the time of simulation, we are marked up in a variety of Sharpie colors that will guide the radiation techs who install us in the specific, predetermined position. Red, green, blue and purple designs collided in an unintelligible code drawn across my chest and abdomen. A blue bull’s eye, sketched where my breast had once resided, dared the machine to bring it on. In the past, patients received permanent tattoos for radiation but most programs now use markers, although we are warned not to face the water in the shower lest the abstract designs rinse off. Radiation techs perform daily touch-ups as the colors fade and cover them in clear, water-proof tape, which often peels off no matter how careful we are.
After completing the simulation, we meet with our technician team and undergo a dry run on the radiation machine, a meticulous final step to ensure that radiation is delivered in a safe and therapeutic manner. The reason for the painstaking preparation? Radiation is a well-known killer. Daily, I passed the danger signs posted on the doors of the treatment area, a constant reminder of the threat. Radiation departments are always located in the basement or lowest floor of a facility because the walls are extra thick and heavy to provide protection, most especially for those who work there every day. Each staff member wears a personal dosimeter to measure exposure to radiation. They turn them in for analysis on a regular basis, and I was told that any technicians who exceeded the recommended limit would need to find another job.
Although I should have felt reassured, the continual safety precautions made me anxious. What if the machine broke? What if an inattentive tech delivered the wrong dose? The machines are calibrated to prevent those mistakes from occurring but regardless, when immobile under the revolving daisy eye of the radiation accelerator, I feared a mistake that would take my life instead of saving it.
As a child, I read a biography about Marie Curie, the Polish scientist who pioneered work on radioactivity and whose death was caused by the object of her study. Although I recognized my irrational thinking, I feared a slip-up of radiation exposure that would result in my sharing the fate of Madame Curie. One morning, I was installed into the mold and several segments into the radiation session when the machine got stuck. The techs, who are stationed in a command center on the other side of the hulking wall, called into the room. They told me to remain still while they requested a mechanic to perform the needed fix. Unable to move, the minutes dragged by as I gazed into the eye of the massive machine hovering mere inches above my face. Anxiety escalated like a carnival pendulum ride blasting into the sky. What if a lethal dose was inadvertently delivered while I was locked in and laid out flat? I pictured the newspaper headlines; MD Anderson cancer patient poisoned during treatment, awaits gruesome death from accidental radiation exposure.
Of course, nothing of the sort happened, the machine came back online and I completed the session without incident. Although I feared its power, the behemoth transformed into a savior that would hopefully stave off any further disease and restore me to complete health.
Thank you for your recent radiation post! I went through the process so incredibly naive! Each step was a “WHAT”! I would lay on the table arms stretched out and sing the Beatles song “Here Comes the Sun!” Welcoming the healing burn! Keep up the wonderful writing of what this process is all about, it is so very helpful!
Good times with the radiation machine not to be forgotten! “Here comes the sun” is perfect. Thank you so much for your support!
Hello, my dear, I am remembering the curated radiation that your doctor discussed with you that first time. It seemed like a miracle and a nightmare at the same time. Thanks for posting this one.
You were right there with me at that appointment, which I so appreciate. Thank you for your support!