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.

A week ago we flew to southern California so that Charles could prepare for a HymnFest at Concordia University in Irvine on Sunday. The air and sunlight of that place remain strong in my mind as I look out this morning over a dark and damp Sanctuary where few branches move and even the birds are very quiet. The concert was splendid with a choir of 90 student and community singers and a highly competent brass group and timpanist adding to the whole. Charles was in fine form from the first notes of his opening Bach to the last pedal glissando of his own composition on “What a Friend” [click to listen] that he played as an encore. Many friends, family, and former students were there and this time that I had greatly looked forward to was far grander than I had imagined it would be.

Vignette: There is a small Chapel on a high ridge on the edge of the Concordia campus that has glass walls so that you can be inside and look out over Orange County to the east, and across the campus and the nearby hills to the west. The chapel is very still inside and plain and cool; the pipes of a small organ are in the back, and a single beautiful stained glass window is over the altar; you can step out through the glass doors and look down over the entire area. The duel sounds of finches singing in the eucalyptus trees nearby and the constant traffic moving past at the bottom of the hill where you are standing are unique expressions of this time and place. The sky above is a perfect blue, and the air is soft – how anyone gets any work done here is a wonder to me.

Vignette: At pre-dawn I leap out of bed and say, “Let’s hurry! I want to see the sun rise over the Pacific!” We get dressed, get in the car, and I direct Charles down the street called Jamboree toward the brightening sky. Charles says, “I don’t think we are going the right way” and I say, “Yes, we are, see, the sun is coming up ahead” and he says, “Those are mountains ahead, not the Pacific. . . you don’t mean that you think the sun is coming up over the water?” He sounds incredulous and I am suddenly faced with the realization that my center of the country child’s imagination always had the sun coming up over the Atlantic AND the Pacific oceans equally. I say, “Well, actually, I did think that for just a moment, and of course, I realize that is completely silly, we have to turn around and go back.” He takes a breath and I know he is going to explain some basic geographic truths which will be painful to hear so I say, “I know that you have every right to tell me about east and west and sunrises and such, and I will listen, but if you can refrain, it would be nice.” He says, “Perhaps we can try for a sunset” and finds a place to turn around.

Vignette: Another morning comes and this time we have son John-paul with us and this time we go westward on Jamboree flying along with the traffic up and over the Pacific Coast Highway, down the hill, over a little bridge and onto Balboa Island, a small bit of land inside of a cove and surrounded by piers with boats of all sizes nearby. We have breakfast at Wilma’s, a wonderful café that is homey and filled with “locals” greeting one another and not needing menus. After we eat, we walk all around the island past all the lovely little houses and gardens facing out on the water. There are great ospreys sitting so quietly on poles out at the ends of piers that at first I think they are carved, but then their heads turn as we walk by, for they are watching us even as we are watching them. The whole place is quiet and remote from the teeming traffic that is in constant motion not far away. Walking in the sun in this enchanted place with dear ones, I mentally note that I am experiencing perfect happiness.

Now, home again, another excellent blood count, late October skies around, Halloween ahead, and a reunion with Alphie coming very soon.

Yesterday’s CBC, the weekly blood check, had a readout that was so fine I would be getting a blue ribbon at the State Fair if there were a category for such things. The blood was normal in every way for the first time since the beginning of this new life; I walked out of the Specialty Clinic at the hospital clutching my paper and grinning like an idiot.

In the afternoon, we were invited to visit Alphie and see the improvements in his behavior. He did very well and walked and sat and waited for us as well as for the trainer. We got our instruction sheets to study so that we too will modify our behavior when we get him back home. Mostly it is like classroom teaching; have an expectation, be consistant in enforcing every rule and unacceptable behavior has “consequences”. I think for Alphie the consequences are no petting, no treats, and “time out” in his kennel. When we left without him, Alphie had the look of supreme sorrow which is pure canine heartbreak – it was very difficult to walk away from him. Now the trainer will be taking him “out and about” to PetSmart and other such places where dogs are welcome. We will be reunited upon our return from the California adventure.

In Alphie’s absence Cataboo, the little gray and white striped cat that lived on our porch for a while last winter, came back. He was sitting on a chair out there and he purred and smiled when I petted him. He was thin and fit and today, while we were watching out of the window, he came down the path, pounced on one of those squirrels that have been putting away pounds and pounds of sunflower seeds and caught it even though it appeared to be as large as he was. He hauled his prize off into the bushes and we were left to consider the latent jungle properties of this little cat which is definitely not a pet.