Writings of Constance Ore ( 1937 – 2010 )

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.

When I went in to the oncologist’s office this morning for the requested blood draw following the three additional injections of Neupogen, the waiting room was nearly empty with the exception of three young women. One of the three was holding a tiny baby wrapped in pink; the mother was frail and fair and quite beautiful with the telltale pallor of illness on her face. 

The readings of the draw showed a remarkable improvement over the Friday’s results – and this was the first time that such a thing happened.  Everything was better!  The doctor even met with me with me though this was unscheduled. . . . “Perhaps I should do a little dance!” I suggested, but to this he looked at me with great gravity.  “It is better, yes, but I trust you are remembering that you are a great distance from what is referred to as ‘normal’ ”  but then he continued, “But it is good news because now you can return to your chemotherapy on Thursday as planned, and then we will hope that you will not drop as low again.  You will go down, but not as far.  Then we will know that you are responding to the therapy.”  I still thought a little dance might be in order, but of course I applied restraint and only moved my feet back and forth a bit. Jubliation! [click to hear Charles play a happy song]

Immediately, the prayers come to mind.  It is as though I have been sliding down a slope, unable to find a handhold to stop myself and all of that community of people who have said to me, “You are in our thoughts and prayers” extended a great collective hand over the edge to reach me and not only stop the descent, but to pull upward. Exultation!

“In the meanwhile. . . ”  Each life has that part of the story moving along with it, and in ours, one segment is Alphie, our nine month old chocolate lab.  While Charles is in Michigan and I am with friends in Lincoln, he is at a kennel where one of the objects of this time will be a bit of discipline.  While he appears to have wonderful bloodlines, his line of ancestors have endowed him with huge size, huge mouth, mighty muscles, and boundless energy.  In our four daily walks around the forty, the latest thing he was doing was picking up dead tree branches and carrying them along, head held triumphantly high.  The branches were getting larger and thicker daily to the point where you would look back over your shoulder and say, “Oh my word!” and leap off the path because he would be coming at great speed carrying a small tree.  The discipline is needed to assist him to understand that jumping up on ourselves and any other persons, most particularly dear children and grandchildren, is not good, even if his motivation is joy and delight.