Part 45 Treading water at the center of the universe


I return to the smaller surgery center to have my port replaced, disappointing for me as it means I am preparing for more chemo. I hoped that it would be over and I would not have to look at the port anymore, bulging from under the skin of my upper chest. I sit in the bed awaiting the surgery for an uncharacteristically long time for this facility, coughing on mucous and draining them of their Kleenex supply. It has been eight weeks since the radiation ended, and I don’t feel that I have made enough progress. I am treading water instead of swimming. Eventually the nurse comes with the injection, and I quickly drift off and escape my plight for a brief moment…

At work the next day I am exhausted despite a night of restful sleep. I drive to see Dr Gu- for a follow up visit, but he is at another office today, and I go back and forth between professional buildings trying to find his office. He has expressed doubts about his ability to correct my esophageal problem (perhaps fearful of what could happen if I retch again when he tries). Next week’s proposed chemo treatment is delayed until we can determine what to do regarding my esophagus. The following day I meet with Dr. Bu-, who admits that the “activity” on the PET scan could be the ulcers that Dr. Gu- found. My mood lightens, although he will not rule out at this time the possibility of prescribing more chemo.

At home Brooke and I walk to the park and make imaginary pizzas at the playground by placing wood shavings on round seats. I soon return to the house again after the aching groin pain suddenly returns. The ice pack treatment provides instant relief, but I am disturbed at its reemergence. I worry of course that disease could have spread to that area, but comfort myself some when I remember that my original swollen neck node was not painful, hoping they are not related in origin.

By the end of the week, a fight erupts between Becah and me. We suddenly find ourselves in a screaming match, even with the kids are in earshot. We have our arguments like any couple, but I am appalled that Becah can bring on this intensity to me now in my condition. She is being unreasonable, of course, because I need her help and support and her anger amplifies my pain. Crying, she is walking toward the door, threatening to leave.

A trial like mine dominates your world, and you see nothing that is not cloaked in this veil. You don’t understand the perspectives of others or appreciate their struggles and issues. You don’t even recognize the burden you have become to them and to yourself. Everything becomes “I”, with no room for “we” (much less “you”). I am the center of the universe, and the others must revolve their entire worlds around me. It has all become about how I have suffered, with no realization of how others are suffering as they sacrifice for me. My wife is afraid of what might happen to me, how she will manage if I am no longer here. She is exhausted, juggling work responsibilities as a consultant with arranging childcare and running me around for surgeries. The children are quite young. They don’t understand why their daddy is spending half of his life seeing doctors and, when not, spending the rest of his time lying in bed. They want me to play with them, pick them up from school, sit at the table with them and share dinner. Or at least tuck them in bed at night. I am absent from so much of their lives during this critical time, and they don’t understand why. We tell them some of what is happening to me, but shield them from too many particulars which will just scare them and cause them to have nightmares.

My world is shattering. And as the center of the universe, that cannot happen.