Writings of Constance Ore ( 1937 – 2010 )

Yesterday morning John-Paul left for Seattle after spending two weeks with us; we were reeling from the hospitalization and its implications for our lives when he flew in and provided light and delight and wonderful support, but the time had come when he needed to return home. Alphie, in the psychic manner of dogs, started the day with “acting out” because he knew at some level that the grand times of running through woods and fields with this new member of the pack were coming to an end. He went upstairs and threw blankets on the floor and lifted a velvet pillow off a sofa in order to rearrange its texture and cover it with dog spit. When I rushed up the stairs at the sounds of the commotion, he had flung himself into his crate and was lying there looking excessively sad.

I am better now, and I know that as before, there were many praying people pushing and pulling me out of the dark places of pain and unknowable outcomes. I kept thinking of the hymn verse from “Earth and All Stars” where the hymn writer says, “Daughter and son, Loud praying members, sing to the Lord a new song. . . he has done marvelous things, I too will praise him with a new song!” It’s the “loud praying members” that I heard though congregations and cards and spoken words of encouragement.

Now we are at a crossroads in this very strange journey – it appears that for a while, I must part company with the chemotherapy Vidaza that carried me forward for nearly two years. An option is moving to a costly medicine called Revlimid that is taken by mouth for 21 days each month. After experiencing life with the ingestion of the powerful poisons that are chemotherapy, I know that the side effects will appear in abundance since my body has already sustained some hits – damaged intestinal lining, taste bud loss, aches in bone and muscle to name a few. According to the information given, fatigue, diarrhea, rash, runny nose, and blood clots are the most common. The reason for taking the drug would be the hope that the proliferation of blasts in the blood stream would be delayed or stopped. Charles and I have had many conversations and we agree that quality of life trumps quantity of days, so at this moment, we are resolved to stop chemotherapies until early next year. The body has begun to make white blood cells again and while the marrow isn’t flinging out huge numbers of them, just a bit of a comeback is very encouraging. As I have mentioned, as the options become fewer, the need to “live by faith” becomes greater and so we do.

Today it is perfectly beautiful at Sanctuary and with Thanksgiving Day less than a week away, we once again count our blessings heaped up and running over. My hope is that those of you who are reading this will also have grand celebrations of the good things, good foods and good people in your lives. Happy Thanksgiving!

Today when I drove into town, the air and light bespoke the coming of winter though the temperature remains mild. Indecisive robins gather in flocks on the bare cottonwood branches and seem to chatter at length about whether to stay or go south. The days are coming when we begin to think wistfully about California or Florida and other points south with green trees, bright flowers, and short-sleeved garments on cheerful people.

Yesterday, Charles ventured north and east to Wisconsin to present workshops to an American Guild of Organists group this morning. Before he left, he played some of the materials he would be using. One that I enjoyed greatly was the last movement of George Akerley’s “A Sweet for Mother Goose” (courtesy AGOhq.org in which Charles not only plays but narrates as he negotiates the lively melodies behind the words. He returns this evening so that he can play tomorrow morning’s service at First Church where he is organist.

I am feeling better though the white blood cell count did drop after giving up on the Neupogen shots. One walks about thinking about every door knob, grocery cart handle, public faucet, coughing adult or runny-nosed pre-schooler because the health care givers have warned against all the above and more. As I was skulking through various venues casting eyes to the left and the right and clutching the Purell disinfectant cream, some of the stories of Howard Hughes’ compulsive acts vis-a-vis germs came to mind, immediately having a steadying effect. If nothing else, I hope to master a balancing act between calm and caution. So far I have resisted carrying a can of spray disinfectant to wave about and discharge at threatening persons or objects. This is just as well, as I might find myself placed in isolation for reasons other than my own concerns. Next Tuesday we return to the oncologist’s office to visit about the present realities and set forth the plan for the coming days. Meanwhile, I am happy to report that this day is a very good day.

When I was gone, the leaves fell from many of the trees, but the weeping willows, born in Wisconsin and called “very hardy” still hang on to their fronds of green leaves. They look unnatural in the gathering of the other willows around them, where the wind comes through the bare branches with the winter’s sound that makes the mind turn to snug rooms with lovely fireplaces and catalogues of Christmas things to consider. In this season, the deer are becoming increasingly vulnerable because the fields of beans and corn are harvested, removing both food and shelter, just as the hunting season intensifies from bow and arrow to guns everywhere. We have a small herd of nine deer, most of them appearing to be quite young, and likely not clever enough to stay inside the forty acres where there is both shelter and safety. Our neighbors and ourselves watch them move from pond to pasture and into the plum copses for shelter. They are such beautiful creatures, and we wish them well.

After coming home from the hospital, the plan was a continuation of Neupogen shots until my neutrophil numbers stood at 10.00. (This number is really a reduction of thousands, and are read in comparison to where they are now). Since it is not desirable to continue the Neupogen shots unnecessarily because they are forcing the stem cells to produce white blood cells, I had a CBC (complete blood count) taken each day with the intent of stopping the Neupogen the moment I reached the 10.00. Unfortunately, after 18 injections, the count didn’t increase significantly, and today, it dropped back from 2.4 to 1.4. Apparently, the healthy stem cells are unable to do any more after the illness of last week, so the decision was made to stop the shots and the CBC’s and wait and see if the stem cells might begin to make a comeback after a rest. Meanwhile, the counts are likely to go down, and I will return to being neutropenic, which means totally without immunities. I am already below normal in counts and the future becomes ever more tenuous. There is a true sense of relief that the needle and I will no longer be keeping such close company but also a sense of time running out. Today Charles and I had the conversation about whether or not it would be kinder to die suddenly in an accident or to have this long and slow dance toward life’s conclusion. We agreed that while the latter is hard, and sometimes very dark and heavy, we must always choose life – and as has oft been said, where there is life, there is hope. We could not do this without faith built on a lifetime of experiences that have been filled with lovely and good gifts from God. We have had music and celebrations and countless delights from splendid children to the occasional lovely rainbow that stands across the sky, unasked for and magical.

— Tune: THAXTED by Gustav Holst Text: Michael Perry

Autumn continues its beautiful ways far outside my fifth floor hospital room and I continue the struggle inside the hospital room. Now the gastroenterologists are studying the situation and I wait for encouraging words about getting to return home with a body that can function properly. One of the partners from the oncologist’s office stopped by and we went through the “What is going on? What will happen next? What do we know?” questioning and the problem appears to be that my body and the Vidaza are not dealing well anymore. The obvious next step is stopping the treatments and letting the bone marrow recover for a while. However, while the chemotherapy is stopped, the blasts begin to gather in their deadly little way, and there is no returning from where that is going. Over the top of this problem is the one with the shooting pains into my left temple, for which I am consuming great amounts of Oxycodone – this can’t go on and on either, and I haven’t even gotten someone to address that. The head pain is such that I want to pull my hair just to distract from it; when the drug kicks in, it is though I move from one reality state into another that wraps me in gentle waves and carries me beyond the pain. I can truly understand why one can become addicted to drugs.

Now it is evening and I am at home. All tests came back normal, so there was no real reason for me to stay hospitalized; the gastroenterologist said very nicely that if I got dreadfully sick again, why, we didn’t live too far away – we could just return to the emergency room and be readmitted. The doctors seemed pleased to let the head problem be dealt with here in Seward. So happily homeward we went, loaded down with drugs and advice and in the coming days, we will determine how we will go forward vis a vis the Chemotherapy. Since the recurring theme is not knowing, we constantly revisit how to live by faith – this starts out being more difficult, but as the props are pulled away, it becomes easier since it is all that remains.

Alphie feels the need to lay under my legs with my feet propped up on his body – Charles said that he was quite morose in my absence, and such joy at a person’s just “being” makes it very evident why dogs are so cherished by such a large population. Tomorrow the weather is to continue uncommonly warm and sunny, so it will be a lovely day to savor all the fine things that make up our Sanctuary.