Abstract
A quick look at my vinyl Week-at-a-Glance planner from September 2005 shows my classes and office hours written in purple; my pick-up times for my sons James (6) and Tristan (3) in aqua. My husband's classes, office hours, and child pick-up times are written in black. All of life's events are neatly scheduled and clearly delegated. September 15, 2005, shows my classes scratched out in green ink and replaced with preoperative reminders of 5:30 a.m. no food, post 9:30 a.m. no drink. Yellow post-it notes stuck to calendar pages verify hotel confirmation numbers and nurses' phone numbers at the National Cancer Institute in Washington, DC. Spare scraps of paper hold detailed instructions of how to get to the Children's Hospital of the King's Daughters (CHKD) in downtown Norfolk, Virginia--a trip I can now manage three different ways in my sleep. I taught for the first five weeks of the fall 2005 semester. I then sent my students an e-mail informing them that my son needed me, and I would not be able to teach for the remainder of the semester. James had been complaining for months of persistent and increasing pain, which responded less and less to Children's Motrin. On September 15, the results of the numerous x-rays, CT scans, nuclear bone scans, MRIs, and a biopsy showed the cause of his pain and decreased mobility was an egg-sized mass in his pelvis. The mass was diagnosed as Stage 4 Ewing's Sarcoma--a bone cancer that had spread throughout his pelvis to portions of his leg bones, his bone marrow, and his lungs. Approximately 12,400 children (aged twenty years and under) in the United States are diagnosed with cancer each year (National Childhood Cancer Foundation). Of the forty-three children diagnosed daily with cancer approximately 10 will not survive (GovTrack.us). I no longer needed my weekly planner to track meetings, classes, or appointments with students and colleagues. I knew every Monday, Wednesday, and Friday, James and I would be at the Oncology Clinic on the second floor of CHKD. My planner became a journal. My life went from neatly compartmentalized to hopelessly fragmented. Although both descriptions suggest parts of a whole, in the compartmentalized life I had with power and agency purposefully created livable moments. In the fragmented life, the pieces remained, but the sense of agency, power, and control vanished. I now lived my life in fractured instants and in response to events that were out of my control and, at times, beyond my comprehension. Welcome to 8B I was immersed in life at CHKD as soon as we returned from the National Cancer Institute. James and I moved into room 807, our first of many rooms on the pediatric oncology ward (known to those at CHKD as 8B). The sterile pink and white walls were soon obscured by helium-filled Mylar balloons of Kim Possible, SpongeBob SquarePants, Clifford the Big Red Dog, and the Care Bears sent by friends and family. We never saw the bouquet of flowers sent by Aunt Liz--live plants are not allowed on the eighth floor for fear that these thoughtful gifts will become Trojan horses for the neutropenic children who lack the white blood cells to fight the bacteria lurking in a yellow carnation or the fungus on a stem of baby's breath. Tuesday, October 4, 2005 Rough day. Really mourning the passing of life as I knew it before James's diagnosis. No regrets for how we lived life B.C. [before cancer], but I so miss the simple pleasures, the bliss of knowing/thinking my children were safe and healthy and would live long, productive lives. I don't know where I am in this process, although I think I'm past denial. Hourly visits around the clock from clinicians, nurses, doctors, residents, child-life specialists, pharmacists, and dieticians erode what was once a secure boundary between public life and private time. James has created a coping mechanism of pulling the white, hospital-issued blanket over his head and taking deep breaths before he has to submit to another medical procedure. …
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