Writings of Constance Ore ( 1937 – 2010 )

When we were in the oncologist’s office, while waiting for the Vidaza to be mixed, we were in the waiting room, and sitting right across from us was a man who had a space carved out of the middle of his forehead, right between his eyes, about the size of an egg. It was sealed with a plaster of some sort which lined the indentation. We conversed with him and his wife in the usual generalities, and I tried very, very hard not to stare and quashed the voice in my head that was asking, “What sort of awful thing happened to your head?” or “I had no idea you could live with such a large indentation”. Now, I think it might have been better to figure out a way to make reference, but we were called to the chemo room before that happened. My Vidaza shots were given in the abdomen since the two arms had been “used” and were still very sore. This round of chemotherapy has been more painful around the injections, but my side effects are not bad at all.

Today, since Charles always is at church by 7:00 AM, Heidi got me and drove me to Lincoln for my fifth set of injections. From there we went to church, sitting in the corner of the balcony and trying to look as unwelcoming as possible. This is completely contrary to the whole experience, but no one came near, and it worked out well. It was pure pleasure to hear the music, sing the hymns, and be a part of the community of believers directly rather than through an electronic medium. In the prayers, I heard the pastor say, “We come, not as human beings having a spiritual experience but as spiritual beings having a human experience.” That phrase was particularly captivating to me as it invited moving out of the confines of the physical self into a much wider spectrum where bone marrow and white blood cells and immunities are no longer front and center. As Charles would say, “Onward and upward!”

When I dutifully took deep breaths as instructed I began to cough again; and the nurse disappeared for a bit, returned and said, “The doctor says that we must continue the chemotherapy, but we are going to have to give you Cipro as a prophylactic.” “Oh” said I, (blink, blink) “I’m going to need a prophylactic?” Now in my life’s history I had only been introduced to that word in one context, and my poor brain was scrambling for meaning. While life has had its moments of spinning out of control, this was off the map. With a smile that indicated that she had an inkling about where my mind had gone, she continued, “Cipro is a broad spectrum antibiotic, and since we really can’t count on your white cells, we will give it to you as a preventive measure so you don’t end up with pneumonia.” Later, when I checked, the dictionary indicated that my previous knowledge of the word’s meaning was sadly in need of updating.

Cipro’s warnings of side effects covers several pages, and the nurse said the most common of these was becoming tired from taking it. I thought, “Ah, sweet Monday when I had energy!” I sent my thoughts toward the insides of my bones and gave a small lecture. “Just see what we are going through now, in addition to the chemical onslaught, now there is more to contend with. . . if you would just crank out some white blood cells, this wouldn’t have to happen.” Actually, I direct great sympathy to this mechanism in which I live; I know that it is doing the very best that it can with the resources with which it must work.

The mails continue to bring cards and letters with their fine messages of prayers and well wishes. One from a dear friend was illustrated with a fanciful winged creature, and she wrote inside, “May your journey into unknown spaces be carried on wings of love”. As I read their words of encouragement, I recall the people sending them on, and the house fills up with the sounds of their voices praying, encouraging, and cheerleading. It is wondrously comforting to know that we are not alone in this “journey into unknown spaces.”

Spring came in a snow storm this year and my life appears to move forward in contradictions as well. For the first time since Christmas, I felt energy almost equal to the former life and it made my heart sing. . . I enjoyed greatly doing some household chores and hauling large buckets of bird seed out to the beleaguered birds that gathered in huge numbers near the feeding stations. They came from every direction through the blowing snow to share the food, setting aside their territorial rivalries for the moment.

This morning, when it was time to return to the oncologist’s office for the blood draw, I was certain that there would be progress. In a way, there was, because the red blood cell count is up and providing me with energy, but sadly, the white blood cell count continues on its way downward. The immune system becomes yet more compromised and I was encouraged to keep track of my temperature since that will be a sure indicator that the defenses have been breached. Now it is not only the world at large that is a threat, but also my own body with its garden of microbes and bacteria that might seek to do me harm. It is too difficult to comprehend; I asked, “How am I to live each day?”

The instructions remain the same, stay away from public places where there are crowds of people, avoid the ill, wash the hands and never touch the mouth, nose or eyes because those are the entry points for sickness. This spring I may not garden because the soil carries all sorts of tiny bacteria or spores which when inhaled by someone as myself could cause awful illness. Then there is always the addendum, “Of course, you can’t stop living. . . you just have to be careful.” So I walk out thinking, “Don’t touch the doorknob, be careful about the car door, quick, wash the hands with Purell, egad! My eye itches. . don’t touch the eye!” I hold Charles’ hand, “Oh dear, he touched the steering wheel, and who knows what’s on that. . . wash the hands with Purell again, etc., etc.” It was a relief to get home and announce, “Today for lunch, Charles, I will teach you how to scramble eggs in the French manner” and so I did. The food was delicious and another page was added to the cookbook.

Today has been a four star, red letter, two fox day! I am looking out the window now at heavy snow falling and blowing past the windows – earlier I watched a fox pick its way across the edge of the wetland in front of the house. Later, another sighting on another side of the house. . . it was likely the same creature, but fox are so elusive that it took the snow fields to make this a “two fox” day. Then, at noon, son John-paul called from London with happy words about his adventures there, and shortly thereafter, dear friends called from Egypt as they floated down the Nile in the evening. Imagine, voices from across the world, coming here to our house – arriving intact and clear after being uttered time zones and miles distant and being dismembered into tiny electric impulses for the journey, then reconstructed into familiar greetings for my delighted ear. So on this day I stood for a moment at the Tower of London in a chilly day and viewed pyramids and palms from the ancient river in a warm and sunlight place. How lovely to have the thoughts move out and away!