Writings of Constance Ore ( 1937 – 2010 )

There is sunlight and warming this morning, and we drove to the oncologist’s office early so I could get the fifth of seven sets of injections of the chemotherapy. Throughout this experience, I have found that tears sit right below the swallowing point in my throat, and occasionally, there they are. This is one of those days; sitting in the car returning home from Lincoln, a terrible longing for the rhythms and activities of my old life came flowing up from the base of my throat and the weeping began. Even knowing that I am like the crying child watching my fine balloon floating away far beyond my reach never to be seen again, it still seems necessary sometimes to grieve.

I visualize the condition like this. My blood is the landscape under siege with the disease (the enemy) entering the terrain and moving inexorably onward. The chemotherapy (Vidaza) meets and does battle, with the Aranesp (red blood cell builder) on the one flank, and the Neupogen (white blood cell builder) on the other. Now the disease is no longer moving freely onward, but is met by resistance and its intended takeover is no longer inevitable; it is not stopped (“The disease remains active” in the words of the doctor) but it no longer is unchallenged. The battleground is becoming littered with aches, night sweats, nausea and others of the fallen, but the cheering voices and sounding prayers support the resistance from all around, and the enemy has none.

This day began with my second injections of Vidaza in my second round of chemotherapy. Yesterday afternoon’s lengthy visit with the doctor was highly informative and built upon another good reading from the day’s blood draw. There appears to be progress, and so far, my body has been handling the constant stream of medications. After the absymal readings last week, the Neupogen was resumed, and continued until yesterday because it appeared to convince portions of my body to make some white blood cells. I would awaken at 3:00 AM with an ache in my collar bone, for example. “Collar bone, what is your problem? You have never had complaints before,” my night thinking brain would say, “so knock it off already.” The doctor said yesterday that there is cell making bone marrow in the collar bone and the skull as well as in the other more obvious (to me) places.

Before I receive the Vidaza, it is crucial that I ingest a medication called Zofran. This cream colored capsule puts a halt to the nausea which is waiting in the wings, and also costs very nearly $40.00 a pill, an expense mostly covered by Medicare and secondary insurance. For that I am most grateful, though I always consider that someone is paying this cost. I look at it in my hand and think about all those funerals for which I was the organist and for which I received a check of $40.00 from the funeral director, always discreetly placed on the side of the console. I swallow the pill. In the seven days of Vidaza I will consume the equivalent of two to three month’s worth of funerary fees, the sounds of “How Great Thou Art” and “Be Still My Soul” faintly sounding in my memory.

The cards keep coming and all of them include well wishes and assurances of God’s care. Always the hand written words in the cards say, “You are in (my)our thoughts and prayers”. I have considered more deeply the nature of prayers than ever in my life before; these are surely the most powerful expression of the church on earth and one of the great gifts therein. Charles and I speak together often of a life time lived in God’s care with blessings heaped up and running over – we say “Why would that be any different now?” Charles includes this prayer in his recitals and we speak it together frequently.

“Lord God, you have called your servants to ventures of which we cannot see the ending, by paths as yet untrodden, through perils unknown. Give us faith to go out with good courage, not knowing where we go but only that your hand is leading us and your love supporting us through Jesus Christ, our Lord. Amen.”

When I went in for my Neupogen shot yesterday morning the oncologist’s waiting room was completely full. This time it was mostly older people looking exhausted and pale, and in the time that I spent there, I noticed three different delivery people coming in with large boxes with markings indicating that medications were inside. It made me consider all those IV bags – each with different formulations determined by the doctors to be the best suited to the individual sitting there. Just before I proceeded into the back recesses of the place, a couple came out and the woman sang out to the receptionist, “The doctor says he dosn’t need to see me for six months!” There was such relief and pleasure in her voice and body language. Yes. That is why we gather here. This afternoon I return to get the blood draw which in turn will determine whether all is well enough for me to resume the chemotherapy. Two shots, one on each side of the abdomen, then the arms, and continuing. . .

Charles came back from his Michigan concerts yesterday, and when he said with a smile, “You would have liked them a lot” I knew that they had gone very well. My requirements for enjoyment of these events are large audiences, good choirs to sing Charles’ music, fine organs to play, and at least several standing ovations.

My friend Linda and I also went to retrieve our dear chocolate lab, Alphie, from the kennels where he had spent the five previous days. I was anxious to hear the report about how we might deal with his behaviors. When we got there, the very nice man said, “Can we talk?” We assured him that yes, of course. . . he continued, “The first time the other trainer (a woman somewhat smaller than myself) took Alphie out, he knocked her down and drug her”. Our Alphie. . . it obviously was not the correct way to start his experience. I told Charles it made me think of taking your child to Kindergarten on the first day and hearing that not only had he flung Tempera paint all over the teacher, but that he had also attacked the janitor. The man went on to say that Alphie is head strong and very intelligent, hence able to quickly learn behaviors, good (pause) and bad. He estimated that our lab will reach 90 pounds as an adult.

It appears that we must send Alphie off for a month’s work (Reform school) in order to have a dog that can be a member of our family. We got him home and he was dear and sweet and looked at us with those soulful eyes so that we said perhaps it would have gone better had we told them about the tree branches he needs to carry about for his walks. . . .

“Someday wind may seize
our expectations like leaves
and blow them about.” Haiku by Richard Wiegmann

click to enlarge

There it is. . . I went in for the Neupogen shot today, as ordered, and while visiting with the nurse commented that the Dr. appeared a bit less keen about my new readings than I did. I said, ” . . .even though they were UP!” and we went through everything again putting the good things and the not so good things into perspective. My understanding is that the doctor will consider the blood count, the dosages of the chemotherapy and neupogin and will use his experience and knowledge to determine how much, how long, and so forth to try to avoid the very low counts experienced last week. The unknown remains the disease itself. I will likely have to rethink the nature of miracles, but with sunlight and springlike air and lovely Valentines, today it is impossible to feel less than joyful.