Writings of Constance Ore ( 1937 – 2010 )

Yesterday’s visit with the oncologist was different from all the others. This time, the information given was that a clone of cells has figured out how to grow around the Vidaza. Vidaza and the other therapies that control my form of MDS work in the same way; the evil protein is pulled away from the undeveloped white cells, thus permitting them to mature and provide immunities. When these cancer cells become resistant, there is not another known approach that can stop their proliferation. The Revlimid would possibly address the issue in a different manner, however, the side effects are very daunting, and we all agreed that the therapy would be a long shot with no guarantees of any success. The doctor said that he brought it up because he wanted us to know of its existence should we wish to try it. He is going to a large conference where blood cancers will be specifically addressed, and he said he would be checking out all information in hopes of finding anything that might work for me.

The plan going forward is to keep checking the blood every two weeks and to treat symptoms as they occur. If and when the red blood counts drop below the acceptable level, there are orders for blood transfusions. My ANC (absolute neutrophil count) is presently at 0.8, and at 0.5 or lower, neutropenia becomes an issue. This can be treated by the Neupogen injections, however, it appears that my stem cells are not replicating themselves either, and in the absence of healthy stem cells, the Neupogen doesn’t have anything to work with in calling forth more white blood cells.

Written out like this, the whole condition looks daunting but there are always possibilities in the future. It could be that on this very day, a breakthrough has taken place; I feel quite confident that Christmas and New Year’s will have my physical presence in this house – on my walk this morning I contemplated miracles and I thought, “Why not?” Perhaps there will be many days before me here in this beautiful place, or perhaps not. Every living thing must die and humanity is no exception. All those words and thoughts about God and creation and salvation and grace that have been woven into my life from my earliest remembering shape and inform how I think about what happens after death. My heaven still evokes images of a clear day in southern California under old growth trees and viewing the ocean.

This morning when we came back past the pond toward the house, I heard the cry of a red tail hawk sounding quite near, but not as loud as usual. I stopped and looked for the source, and a blue jay was sitting in the cedar doing a fine job of imitating the far larger bird. I have no idea how or why, but it added an interesting footnote to the morning. So it is. . . always, I return to the “now”. Alphie lies here next to me hopeful that I will soon take him out to walk around Sanctuary and Charles just came back from teaching to announce that it is time to check out a Christmas tree and decorations. C’est la vive.

Oh, to be able to sing like that! To fling out my voice and have the neighbors who live several blocks away say, “There she goes again. . .the birds are all flying over here and the deer are fleeing as well”. Those were the kinds of huge voices that we heard last week at the Lyric Opera in Chicago in the presentation of “Die Frau Ohne Schatten” (The Woman Without a Shadow). This is a Richard Strauss opera that has fantastic music and a libretto that has to have been written by someone whose imagination was more than a little odd. (One can get the entire story on the web page of the Lyric Opera) The opera had gotten stellar reviews in the newspapers, and the huge orchestra made the music shimmer and shout. . . it was grand! There were however, unintended humorous moments – for example, the emperor (with the incredible tenor voice) came from the upper world to the human world on a life-sized white horse frozen in mid-stride with tail flying and one hoof suspended ready to gallop away. He descended from above, a journey of about thirty feet to the stage floor, and as he came, the horse swayed back and forth and you could see the death grip the man had on the guy wires while trying to look heroic and sing at the same time. One could easily imagine the conversation that took place prior to the event. . . “You want me to do what!!??” And so forth. The other event that drew unintended spontaneous laughter was the slow appearance of the ideal male from a well in the center of the stage. The dyer’s wife was being tempted by the other-worldly women who were trying to snatch her shadow and after describing her husband as uncouth and unworthy in glorious song, they attempted to seduce her with the ultimate male. He came up painted in a gold sheen and with a typical body builder’s body all abs and such and draped in a golden loincloth. While he stood there, arms folded and trying to look like the absolute beginning and end of male desirability, for some reason, we all began to giggle and laugh even while thinking, “Oh dear, this is not supposed to be funny”. Ah, but the music! It truly was a lovely, memorable evening.

We had uneventful travels last week, flying to Chicago and our daughter’s home on Sunday afternoon and coming back on Thanksgiving Day thus avoiding both the greater intensity of traveling people and an excess of turkey centered eating. Home looked wonderful even though there is now a dusting of snow; we left in autumn and returned in winter. We picked up an ecstatic Alphie yesterday and our life has now resumed its usual pace.

The fire burns nicely in our stove as I look out at a wintry afternoon sky – next week decisions will be made about the near future. To use a cliché, I believe I am between a rock and a hard place vis a vis viable options. As I said before, the chemotherapy that has worked seems to be at an end, and the options are to go on with a different type of treatment that is not a first choice or to do nothing. The outcomes are unknown in either case, so I choose to sit and think about supper and recycling catalogues and other mundane things. It seems that sanity lies in the calm moments – it is enough to say as early darkness comes, that this November 24th was a good day. Thanks be to God.

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.