Writings of Constance Ore ( 1937 – 2010 )

This morning I read the April entries in this Blog from the previous years. Life does seem to move in a large circular pattern, with the same “first tick” sightings, daffodils blooming, and concerns about blood readings, cancer progression, treatments, and physical changes all remarked upon. A longer, slower decline is difficult to imagine.

A cool, damp morning begins this April day which has me looking in the mirror and saying with dismay, “Whence my Crowning Glory?” (translated, “My hair is falling out.”) Why would those sturdy follicles loose their grip now, after all this time? The hair is thinning rapidly, but I have not yet reached the comb-over stage. I can’t decide whether it might be better to have it all fall out and then have one of those re-hairing events that one reads about, where the next crop comes in thick and curly or in splendid red tresses or the like, or hope that this present shedding is a sympathetic occurrence with Alphie. His winter coat is removing itself hair by hair in gentle sprinkles everywhere he goes.

I am nearing the end of my last red blood transfusion’s boost in energy, so I walk more slowly, breathe more heavily, and think more deeply about end times. The Neupogen shots did move the white blood cell count up slightly, but not enough to elicit much hope of a triumphant return of bone marrow output. A week from today one more marrow draw is scheduled – this to show whether the last months’ efforts with chemotherapy have accomplished anything. So we move onward in the circle of life, grateful always for the good things and blessings that embellish our progress and smooth out the path ahead.

PS: John-paul, this Blog’s illustrator, is traveling “across the waters” in the next weeks, so his additions will come as he is able to find time and access.

Neupogen (which is the product name for Filgrastim, a human granulocyte colony-stimulating factor produced by recombinant DNA technology) is used to force the bone marrow to produce white blood cells. It makes me think of sending out the Mafia’s collection agents. . . the material enters the body via an injection into the sub-cutaneous flesh (the fat around the navel, or those hanging bits on the upper arms) and from there marches forth to make its demands. The marrow does all that it can, though not without complaint. . . the presence of the enforcer is made known by pain in all sorts of places including the jawbone, the back, hips, etc., wherever there might be some marrow capable of flinging out some more white blood cells. So far, there has not been a leap upward in the population of the latter, but it is hoped that this is because of the remaining presence of the chemotherapy. Today I get my last of eight injections, and on Friday, there may be a sign that improvement has come.

I am better now, with a settled digestive system. At the height of misery, I vowed that I would never eat again, but I am already cooking and baking and enjoying many foods. Charles has resumed his cooking lessons, and we are having a good time making things together in the kitchen.

This is Holy Week, when we remember and celebrate with the wonderful services that review Christianity’s long told story of redemption that takes life through death and back to life again. In this strange existence of such awareness of approaching death because of an illness that has no other outcome, the thoughts of heaven, or life after dying, are many. “We are all dying, you know” friends will say, and I consider why and how it is different for me. Perhaps it is because my physical being is always a little less than it had been not so long ago. Anyway, when the joyful cries of “Christ is Risen!” rise up from churches around the world, none will be more delighted than those that come from here. “He is risen indeed! Alleluia, alleluia!”

I have suffered a setback. As I reported before, I embarked on three separate rounds of five infusions of Vidaza with the hope of delaying or stopping the AML. I completed thirteen of the fifteen when in Thursday’s early morning hours my body shouted “Enough!” It began shortly after midnight with intestinal cramping which increased in intensity to the degree of “On a scale of one to ten” I felt to be at eleven or more and by 2:30 AM we were at the local emergency room with my entire focus narrowed to a desire for release from the pain. Hurry. Please. Soon. Since morphine gives me headaches, Demarol brought blessed oblivion. This time there was internal bleeding and I remained in the hospital until Saturday. Now I move pale and weakly through the hours, swallowing antibiotics, eating bananas, rice, applesauce and toast and healing very slowly. I will receive Aranesp and Neulasta and perhaps another blood transfusion in the coming days. The stress of the Chemotherapy will be at its greatest toward the end of this week, so after a few more days, I hope to be on the other side of this present situation.

And so spring advances – today there are low clouds moving rapidly overhead, and snow showers are accompanied by north winds. Since March did indeed come in like a lamb, all of the above was to be expected as the month exits with lion like roaring and blustering. We do know that these sayings do not become written on the foreheads of our cooperate memories on a whim. The different species of our summer birds are now arriving every other day – yesterday the cowbirds arrived, and the day before that the beautiful ring necked doves sat on top of the principle bird feeder seemingly pleased with what they surveyed. The clamor of the territorial bird song grows and we anticipate more in the days to come. This is the season of wonder at our Creator’s choice of sounds and colors. . . how does the daffodil sit through the iron soil of winter to emerge so bright and yellow and determined? It is always a new lesson in endurance and hope and it is joined by many such signs in the lengthening days of the coming season.

Today, I completed the second infusion of Chemotherapy in this third round. So far it has not been dreadful; the present discomforts are nausea and bone and muscle pain. There are plenteous meds to ease all of the above, and I have resolved to rest and make the passage through these next fourteen days as easy as possible. Yesterday, while I was watching a wild sky out of the east windows of the chemo room, the sirens sounded the Tornado Warning and nurses came in and took us all to rooms on the inside that were without windows. They were very calm and took the procession of chemo receivers down the hall, each pushing an IV tree with the dripping medications never missing a drop.

Furious winds have been blowing unusual warmth from the south for several days now, while other winds have been bringing snow to the west and north of us. We had some rain and a bit of hail as these systems engaged in a battle of dominance of the skies; fortunately, the tornadoes moved to the east and south of us, and here at Sanctuary, all was well when we returned from Lincoln. Alphie comes to the city with us, content in the back seat of the car until we get into the 25 miles per hour zone. Then, as we slow for the stoplights, he wishes to stick his head out of the window, and if we do not notice soon enough, he will place his nose as close to the ear as possible and “Woof!” One involuntarily reacts and we try to open the window before this occurs in order to avoid driving up on the sidewalk or bouncing the car into the next lane. These trips with all the new scenes and scents to enjoy appear to be a canine high point. Alphie waits at the top of the stairs, and when we say, “You can come along” his joyful rush to the door always makes us smile.

The hymn that I am trying to memorize this week is “Come Away to the Skies”, a Charles Wesley text set to music found in “A Supplement to the Kentucky Harmony” (the tune is Middlebury). The words seem very compelling to me at this time.