Writings of Constance Ore ( 1937 – 2010 )

Yesterday morning brought a new experience with possible side effects of Vidaza. At dawn, when I tried to get out of bed, the room around me began to spin with great intensity and speed. I felt as though I had become centered in a vortex, and squeezing my eyes shut, then re-opening them had no effect. Powerful nausea joined the spinning and I lay back down as still as possible. I consumed the anti-nausea pill (Zofran) and waited. . . the spinning abated after a bit, leaving me unsteady with a head feeling as though it was stuffed with wet cotton. When we called the Oncologist’s office, the doctor on duty told us to go to the hospital in Lincoln and get checked out saying that sometimes a sudden drop in blood pressure might bring on such symptoms. When we got to the hospital, all my vital signs were normal, but I didn’t look or feel too well, so I was sent home without the scheduled Vidaza treatment. The day was one in which I was glad that I didn’t have to lead dancing, or cook, or clean, or do anything. This morning, I felt better, and Heidi came out in order to drive me to the Specialty Clinic at the hospital in Lincoln to resume the therapy. (Charles was at church playing for services.) Though we always ask, the answers are never definitive: yes, it is possible that this is a side effect of Vidaza, or yes, it might have been a peculiar version of the flu, and yes, it could happen again tomorrow. I reflect on how one adjusts to present reality – at first, I was stunned to have mouth sores and loss of taste, or intense itching, aching, stomach cramps, etc., yet, as the seven days of chemotherapy would come and go, these would also pass. This seems worse because it is messing with my head, and that feels more personal somehow. I have two more days of injections so we will see what transpires.

Though Alphie has been a fine creature in recent days, last week, he showed up as Alphie Other Dog. I was in morning mode, brushing teeth and such, and he stealthily pushed open the bathroom closet louver door behind which was stacked a treasure trove of extra thick toilet paper rolls. He very quietly removed not one, but four of these and took them around the corner to the bedroom and the stairwell and commenced to create an appalling volume of doggie chunks of toilet paper confetti. When I stepped out of the bathroom ready for my day, I couldn’t believe my eyes – it looked as though we had a snowstorm right there in the house. Of course, I yelled at him, and scolded him loudly as I gathered up the remains, but even while looking somewhat contrite, he was eyeing the louver door with longing – it likely was a more exciting morning than any he’d had for quite some time.

Today was made memorable by the visit with my Oncologist in which the results of last week’s bone marrow aspiration were discussed. The news was not as fine as we hoped for; the percentage of blasts in the blood has advanced to 10% from a lovely 0.5% reading in May, 2006. At 20%, one crosses into AML territory, and once there, in this disease, death comes sooner rather than later. I have had a splendid summer and the month of September was stellar, so without discussion, Charles and I both thought that this must mean that improvement was surely taking place in those secret places in the bones. However, in the context of an analogy, the doctor said, “Even in the best laid cement, a crack appears at some point, and something grows there. . . this illness is constantly looking for ways around the chemotherapy, and sooner or later, it will find it.” Already, it has taken increased amounts of Neupogen to bring the white blood cell count back up, and that too has its limitations because it is forcing the body to make the cells. . . “like whipping the horses to pull the wagon as fast as they can. . .”

We asked for a frank discussion, and we agreed that we heard just about all we could absorb in one setting. The doctor said it is hard, because it is looking down a dark tunnel with no light at the end. As is, I will continue the Vidaza as before, perhaps shortening the time between the rounds of chemotherapy to four or five weeks, though again, it is not known what effect more frequent rounds will have. It is not known when/if my body will no longer respond to Vidaza. It is not known if/when the percentage of blasts will go up. The therapy gave me the good days with good blood counts, etc., so we will continue as before, and remember again that we must live in faith, and by the grace of God. It is always shocking to hear that your days are indeed numbered. As I took out the winter turtleneck shirts and corduroy trousers that I packed away in spring, I remembered thinking then that I might not be needing them again, but now they are back in the dresser drawers, and the summer clothes is packed into storage places for another season. So much is unknown in this new life!

This October 9th was a perfect 71.1 degree, sun drenched day; before the visit to the doctor’s office, I took Alphie around for his walk, and two red tailed hawks were sailing over the pasture calling to each other and appearing to be out and about just for the joy of it. After the visit to the doctor’s office, we went to the sporting goods store and found some very fine binoculars for me to use as I walk about. They are a birthday gift from Charles and are vastly superior to my present pair so I shall enjoy them greatly. “These come with a lifetime guarantee” the young man said very earnestly, and I thought, “Hmmm”, but then on the way home I considered that I too have a lifetime guarantee. Thanks be to God!

This morning we had rain at dawn – lovely and refreshing and without storms. Now the sky clears and the air is washed and fine. In the past week, the winds came rushing from the south, carrying molecules recently residing over Oklahoma and Kansas, and when I took a breath, I considered that those very bits of air might well have been passing through the nostrils of a southern politician not too long before. I am not sure it altered my thinking, but one never knows. . . now it is still and peaceful over Sanctuary, with the birds reemerging from the trees and checking out the feeders and grasses for good things to eat.

This afternoon I will do the bone marrow aspiration. The procedure is prefaced with my taking two hydrocodone tablets before arriving at the oncologist’s office, then I am given something under the tongue and also an injection in the arm. After a bit, I am almost in an vegetable state, and we begin. Daughter Heidi comes into the room with me and holds my hand and keeps up a conversation with me – the first time we did this, the doctor asked her, “Are you the fainting kind?” and Heidi said, “No, not at all.” This will be my fourth time. The marrow will be sent to the Med Center in Omaha and read there, and one week from today, I will meet with the oncologist and we will discuss what is within and how the next months will go. . .

Granddaughters came for an “overnight” last weekend, and it is a recurring joy to view life through the eyes of fresh minds. Their observations on the forest walk helped me to see things that I had missed, and they carefully removed the seeds from several pods lying beneath the honey locusts so that their grandfather could pot them and get them started in the greenhouse. He promised to take care of it, and while they may envision a small forest of honey locusts in the near future, we are more realistic about the outcome. Kira, the seven year old, worked out a play date for Alphie. “Grandma, I have an idea,” she said with great seriousness, “We’ll take Alphie home with us, and we will send our two cats home with you for the day. . . they’ll be just fine, and Alphie will love it at our house!” It makes me smile to imagine what such an exchange would do to the general karma of both places.

And so the days go on, here and elsewhere, with events large and small occurring in lives all over the world. We strive always to live within Martin Luther’s wonderfully crafted words of prayer, “Into your hands we give ourselves, our bodies and souls and all things – let your holy angel be with us so that the wicked foe may have no power over us”. To LIFE!

October 4 addition:
The bone marrow aspiration was successfully completed on Tuesday afternoon. I was given a lot of pain killers, but the procedure still felt like a large sized root canal operation in the upper hip bone. it is surely memorable, and all for the wrong reasons. Now we wait for the report on what lies within.