Writings of Constance Ore ( 1937 – 2010 )

Last Thursday afternoon we went back to the oncologist and I had the question written down. “If my blood is so good, and if I feel so fine, is it possible to hold off the Chemotherapy until the blood counts begin to sink again?” The conversation was lengthy and sobering. I was told that the blood counts are “peripheral”, meaning the blood which flows out the arm is a distance from the bone marrow, where the work is actually taking place, and other indicators show that the disease is active, but suppressed by the Vidaza. The direct action of the chemotherapy on the blood cells is not really known, only that it works for some people. I was told that if this had occurred before the advent of the treatment, I would not have lived this long; the doctor said that at this time, I was his only surviving patient who has had this form of cancer, though he added that the others had been older and sicker with other health issues. The eight week recurring therapy that he and the doctor at the Med Center in Omaha have developed for me is based on what they hope is the best course of treatment, not on actual data or experience. “Up until now, no one has lived long enough for studies,” he said, and “We are only guessing”. Since this has brought me to such happy remission so far, everything will go on just as before. He said there is a new, parallel drug that has just been released which can be given in five days, rather than in seven, through IV’s, but since Vidaza is working, he would not wish to “rock the boat”. Though I get sick from the chemotherapy, here again, from his perspective which is “You haven’t had to be hospitalized, have you?” it is not too bad. These present days will give me a good Thanksgiving and Christmas, because my next session will not take place until after the New Year.

On one level, the entire conversation seemed to be about someone else because I have felt so well. On another, it made the course of treatment more acceptable since the threat of losing the good days was so intense. As of this morning, I have gone through four days of injections with each day increasing the drug reactions. Now, fifth day, the aches, stomach cramps, exhaustion, mouth sores, and hot flashes have all checked in, and my disposition is growing unstable. For example, I got all teary-eyed because I couldn’t get my socks on as efficiently as I wished, and when Charles started to tell me that we had to be vigilent with Alphie because he sensed that Alphie was making some moves that were saying, “Ok, marshmallows, I think I’ll just make a grab for the cheese on the kitchen counters now, and don’t bother to try to catch me” I had to tell him I couldn’t deal with negative information. “Right” said dear Charles, eyeing me sobbing into the Kleenex, doubtless thinking his own thoughts and also counting the days.

In truth, our week with Alphie was excellent. He only failed once when I was walking him across the pasture at dawn on Saturday. He was off leash, running about, when he encountered our neighbor’s dog, also a chocolate lab, though one of the English strain, and therefore much smaller, which was also off leash. Alphie went after poor Spenser growling, leaping, and carrying on like a 100 pound bully. In the process, his pinch collar came off, and now I had zip control possibilities, though I did have a leash in my pocket. Spenser’s owner got hold of his dog and stood calmly while Alphie went after him right there at his feet and I sort of ran about helplessly saying, “Off, Alphie! Off!” which I assume he took to mean, “Go for it, big fellow!” I finally got the leash looped over his head and pulled him down the path apologizing profusely over my shoulder as we departed. In reflection, I think the situation was one for which our trainer would have said, “Avoid letting that happen at all costs” because the outcome is inevitable. Alas. It seems that in these matters, I am treading on the border of Utopia with any missteps taking me over to the “dark side” in a heartbeat.

Monday we began our Chapter Two with Alphie. We met with the trainer Mike and our dear miscreant Alphie twice before this day so that we saw how things were going, and also learned some things about how to go forward. We were all delighted to be together again, and Alphie has been “Wonderdog” ever since returning home with us. Mike gave us a beautiful outline for our continuation of the work that was done, and this morning, as planned, I took Alphie to Concordia campus and walked there. One of the difficulties we had was that out here, we didn’t interact with many people, so when friends or family came, we had a wild, ungovernable 100 pound creature leaping, mouthing and carrying on. This was a primary behavior modification that the trainer addressed, and in order to retain the learning, I needed to take Alphie where there are people. I didn’t plan my timing and we arrived at the crosswalks on campus just as Chapel was ended, and we were suddenly met with a wall of people. Alphie was stellar – he walked close to my left side, remained calm, and when someone asked to pet him, I followed my instructions and said that Alphie was “in training” and would need to be seated first. I made Alphie sit, and the petting took place, exactly as we were told it would. We met friends, Alphie sat and waited; he BEHAVED! Though the reformation has been in effect only a short time, we are delighted and hopeful – as of this hour, Alphie is the dog we assumed he would be without training, just because he was living with such excellent humans.

Colder weather came with November, and only the weeping willows have green leaves still. They are a species from Wisconsin so they wave their fronds about and appear to say to the local creek willows that have lost most of their leaves to the north winds, “We laugh at this weather – you think this is cold? Hah! You should experience Wisconsin!” Tonight the low will be in the ‘teens, so perhaps their bravado is short lived.

Tomorrow I return to the oncologist’s office and I will perhaps/likely begin another round of Chemotherapy. The days since September 15 (when I returned to feeling near normal after chemo) have been a gift of life and I think I have never enjoyed myself more in all my years. Now my prayers begin with a long litany of thanksgiving for so much of what had been ordinary life experience before. Many days I was able to forget entirely that the early days of remission are not quite the same as arriving all the way home.