“Let’s not say it is special. We don’t want special. But maybe we can say it is a little better than average?”
“Yes,” our stand in oncologist said with a smile, “definitely better than average.”
Angela has completed cycle one.
It ended with three days of special fatigue during which many plans were made, however small, and abandoned, for lack of energy.
We were in Kingston yesterday to meet the oncologist. Our regular doctor was away. We met with his stand in, a woman with an Irish accent whom we are both certain we met before, but who, curiously, tried to convince us otherwise. She was preceded by a resident who asked a few questions about pain, nausea, fatigue and other potential side effects. He looked dumbfounded and disappointed each time Angela confirmed that yes, she did have pain, nausea, fatigue and so on. His favourite phrase was “that’s excellent” which he used confidently when Angela reassured him she had not had a fever, and again when she told him she has no new sites of pain. We quickly came to know what answers he could handle and what he couldn’t. “There’s really only one question here,” he said, “whether we continue with cycle two or not.” In his opinion there was nothing holding us back. In our opinion this was never the question.
Our Irish stand in did not even sit for our brief encounter. She reminded us that after all she was just standing in. She was pleased however to tell Angela that her “counts have improved.” Her blood protein counts have dropped from 18 to 6. This, she said, was very good after one cycle of treatment.
A drop from 18 to 6 is not special, but it’s better than average.
We were happily reassured by this number 6. We agreed 6 is a full 2/3 less than 18 and that 2/3 is certainly not nothing. More importantly we were happy to know there is a score to keep.
We returned home to start again, hopefully now a little bit wiser.
We agree with our good doctors that there is little use in focussing on the negative. There remains plenty to be grateful for. We have been able, almost without fail, to have our breakfast on our back patio in Belleville each morning, surrounded by walls of flowers that have made us popular with the butterflies and bees of the area. Every walk, in any direction from our home, is beautiful and serene, close as we are to the lake, the marina, and the river. Belleville, as it turns out, is a good place for inner battles, calm, quiet, and orderly as it is in all of it’s appearances. During our good moments, on those walks we manage together, or during breakfast, we put the other moments in their place.
“I will never get my own shape back,” Angela said. She has learned that steroids are a component of almost all phases of treatment of this disease. She has gained 10 pounds in a few weeks, and, as is inevitable with this drug, is thinner in the arms and legs, rounder in the face and belly, more humped in the upper back. This despite her effort to quench her increased thirst and feed her increased appetite primarily with watermelon. We agree that watermelon these days seems crispier and more flavourful than ever before. Angela, restlessly, has been consuming at least one, sometimes two, every night. As the chemo has somehow perverted her tastes, sweet now tasting sour, she has given up the nougat and pastries that were her previous pleasures. Also due to interactions with her drugs, dairy has been severely cut down. “Watermelon is a godsend.” If it hasn’t curtailed weight gain, at least it is something reaped from this otherwise fleeting summer, and in heavy doses it seems to alleviate the irritation in the bladder that comes from another of her drugs.
There is now little difference in the day and night for Angela. She is as likely to be awake or asleep in the middle of night as in the mid afternoon. Following the pattern of the ups and downs of her medications, days of increased restlessness alternate with days of increased fatigue. One night I woke to the sounds of her rearranging the cups and plates in the kitchen cupboards. When she finished she woke me to tell me that I’d better not screw up her new system. She was convinced that if it wasn’t for my absentmindedness she wouldn’t have had to do this to begin with. She then insisted that my absentmindedness was a sign of my indifference towards her and that obviously I didn’t care at all. It was 3 a.m. and it was not an option to tell her, true as it may have been, that this was her steroids talking. She knew this anyway. Soon she tried to apologize while I tried to insist that I was truly far too absentminded. We ate watermelon.
Our doctors remind us that none of this, these ups and downs, are anything special. What is most important is the number 6. We agree. Today I sat with Angela as she swallowed twenty of today’s thirty-five pills, nothing special. Afterward we walked Rocky along the path by the river and spoke about Tzvetaieva, the greatest of Russian poets, and her quest of the absolute.
