Writings of Constance Ore ( 1937 – 2010 )

Cancer is a cruel disease. Yesterday when we went to the oncologist’s office for the second shot of Vidaza in this fourth round, we met for the second time a man with whom we had become acquainted through the choir at First-Plymouth. He and his wife were also planning on going to Russia with the tour this summer, and unexpectedly one day, there they were in the chemo room. He was just beginning chemotherapy for a newly discovered cancer; this time they were returning after his gall bladder had been removed. Now the cancer in his body is moving aggressively on, and he is facing new, experimental treatment. He is fiercely fighting this terrible interloper, and it is a monumental struggle indeed. Meanwhile, my cancer is slow and quiet, stealthily removing stem cells bit by bit and without pain.

Spring is at its zenith, with all growing things stepping out, pushing forth, and beginning anew. The greens are still vivid and vigorous, the plum blossoms hide the thorny tree stems, and the willow branches seem to enjoy moving about with every passing wind current. These days require celebration because they are so fleeting. We went to the favorite grocery store in Lincoln, and for the first time since Christmas, I was participating in an activity which had been routine and unconsidered in my past life. Charles was very patient as I piled all sorts of lovely viands into the basket, and the joy of viewing all the food choices was grand. My energy has not yet begun to diminish from the chemo, and the cooking and baking activities are calling out, loud and clear.

“Earth and all stars! Loud cheering people! Loud praying members! Sing to the Lord a new song! He has done marvelous things. I too will praise him with a new song!” These hymn phrases are moving through my mind, and your expressions of happiness at my news of improved health bring them forth in full organ and joyful congregational song. Thank you for making the sound grow and grow!

Today was a memorable day. When we reviewed my progress with the doctor at the oncologist’s office this AM, I found that I was removed from the endangered species list, because for the first time, the word “chronic” was used. In January, I was diagnosed with a disease that had no presently known cure, and frantic family searches on the Internet repeatedly found the statistics that said average life expectancy would be under a year. We began the Vidaza, a chemotherapy too recently developed to have a large history, and the new life began. Now, after three full cycles, the red blood cells have continued to increase, along with my energy, and the platelets are in the normal range. The white blood cells remain puny in number, but the neutraphils have recovered enough to be able to put up some defense against infections. I even look healthy, which is something to remark upon when one sees the general gathering in the waiting room. I have been given the go ahead for some work in the garden, and for going out again into the public realm.

Now I begin the fourth round of chemotherapy, and after that is completed, on May 12th, a bone marrow aspiration will be taken – this reading should reveal whether the Vidaza is effecting a change in the architecture of the white blood cells. (The problem remains with the body’s inability to form mature white cells, and Vidaza’s intent is to force these infant cells to grow up and go forth into the blood stream and take care of business rather than floating about, completely useless and taking up space needlessly.) I spoke of my arms getting lumpy from the shots, and instead of getting ten or more additional injections of Neupogen after the Chemotherapy, I will receive just one injection of Neulasta, which apparently does the same thing. (My mental image of the size of that syringe is best left unsaid.)

A fable: In an inner room of a large drug company, a young person is seated at a desk to work at one assignment. She must find names for new drugs as they are developed; the names must have some connection with the purpose of the drug but also must roll off the tongues of doctors and patients alike. One of her assignments was to find a name for Pegfilgrastim – Injectable; Neupogen had already been used as the name for the competitor’s drug offering which had to be given daily. Her company’s drug had the feature of one injection lasting for ten days. She thought and thought, and while she was thinking about names, she was scribbling in her atrocious handwriting on her desk pad. She also had the assignment to find a name for Eszopiclone, a new sleeping aid. After going through Neulongten and Neucellup, she finally scribbled Neulasta. She liked the word so much she wrote it many times, large, small, and with wildly florid lettering. Just then, the head of the Eszopiclone team came by and looked at her note pad. “I like it!” he cried, “it’s genius. . . it’ll sell millions!” He carefully wrote the word “Lunesta” into the palm of his hand, and beaming, went on his way. And so it was that the young woman, through her terrible handwriting, named two drugs with one thought.

Tomorrow is my last day of “no injections” for a while, because chemotherapy resumes on Wednesday. Time appears to move differently – speeding along in the joy of days that are simply commonplace. I didn’t go to church on Easter Sunday morning after all because my body informed me upon awakening that this would be a quiet day of slower movement and inner contemplations. Charles played his Easter’s opening prelude for me on Good Friday eve after the church service and after people who left in silence were long gone. It was grand and one he had not played before; (César Franck’s “Piece Heroique”). It began quietly and built up to huge and arresting chords that seemed to express very nicely the movement from a still morning’s visit to an unexpectedly open tomb to the monumental joy of “Jesus lives! The victory’s won!” When Charles returned from the three services at Plymouth, he carried with him a gift for me from the TV crew – a DVD of the service that we then enjoyed later in the afternoon. We watched and listened sipping tea and eating apple pie, making it a perfect commemoration of the day.

This evening we will celebrate the sixth birthday of Kira, our second oldest granddaughter. She is full of energy and loves “sparklies” above all things, so I went through the costume jewelry that ends up tucked behind other things and found some to give to her in several dear little boxes lined with handkerchiefs that I brought home from my mother’s house after she died. There must be about fifty of the latter, some everyday prints, some embroidered, some with black tatting around, presumably for funerals. They are nicely ironed and consigned to a forgotten past, so I selected some printed in bright flowers and hearts for this occasion.

Yesterday, when I went into the Specialty Clinic for my Neupogen injection, I was placed in the small room that has a water color painting of a patio or garden entrance on the wall. It always reminds me of a wonderful back yard of a dear friend in California, so it is a place that pleases me. The door is left open into the hallway, and I am privy to everything that takes place nearby. This time it was a farmer and his wife coming out of the adjacent room, and stopping to hear the nurses’ instructions. The man’s face and arms appeared already tanned from time in the fields, and he stood bent forward just a bit twisting his cap around and around in his hands, looking at the floor. His wife stood near him, stroking her hand up and down his arm. The nurse said, “Now you know what this means, don’t you? When your white blood cell count is this low, you are very, very susceptible to infections – to getting sick. And when you are working in the fields, sometimes there are things in the soil that can really make you sick.” The man looked up and said to the nurse, “You think maybe I could wear one of them masks like the doctors and nurses sometimes do on the TV?” The nurse said gently, “Of course you can, but you just have to be so careful.” (I had counted on wearing the mask myself to work in the garden and go about, but was told by both doctors and nurses that the truly nasty sorts of things come right through and it was a mistake to count on a lot of protection from them.) The couple turned and began to walk toward the entrance quite slowly, not saying anything. It didn’t take a lot of imagination to consider that their decisions about field work and chores and going on would not be easily made.

My own story is a happy one on this Good Friday; I went in for my third blood draw this week, and this time the readings indicate an improvement that is so fine I will consider going to church on Easter. My white blood cell count is at 2.1, a reading I haven’t seen since that day in February when we were rejoicing with white tulips and happy dances. The neutrophils, those warrior cells that must be there to hold off infections, have come all the way up to 1.0. (At their lowest count, they read 0.1, and stayed there for many weeks. The low end of normal begins at 1.6) This also tells me that for five splendid days I will not be getting injections. The up and down course of this disease has cautionary signs everywhere, but what a fine gift is this day! The dread mouth sore is waning, and life is good.

I will accompany Charles to church this evening and sit in the balcony to sing the hymns and hear again the story of Good Friday’s great drama. I know the readings, the solemnity of today, the quiet prayers, and the stillness of the tenebrae, but it is in the community of believers singing, listening, and speaking together that I can get a sense of how large and life changing is this action of God. And yes, because of today, I have already leapt ahead to Hallelujah’s and songs of joy and gladness!