Writings of Constance Ore ( 1937 – 2010 )

In just three days I will resume the chemotherapy treatments, so each morning I think I should hurry up and enjoy life while my energy is holding. The options are so many and so attractive, I seem to spend a good deal of time sitting around considering them without actually doing anything.

Sanctuary is extravagant in its colors now, with the large white clusters of elderberry standing about in beautiful random bouquets over the wetlands. Nearer to the house, the day lilies, coneflowers, hollyhocks and yarrow are all in full bloom with promises of many days of celebration to come. It is very dry and though we stand out looking at clouds that pass by to the north and the south of us, and though we say, “Over here!” to the rain, none has fallen for a long time. Most of the birds seem to have gotten the early feeding sessions completed; now it appears that the parent birds are leading their offspring in flying lessons as they all arrive together at the topmost branches of the cedars near the house.

First day of summer, and we are in Chicago in stormy weather. We embarked on a little road trip, the first such adventure since before the MDS entered our lives. This drive across Iowa and into Illinois has been great fun, as well a good reality check. I tire more quickly than before, but the shocking discovery is that my hair has thinned quite remarkably. Somehow I missed that at home, and under the lights of the motel mirrors, I noticed that I could see a lot of skull through my formerly adequate head covering; sort of like a part that has widened far past the acceptable width. I said to Charles, “I don’t have nearly as much hair as I did before!” He replied calmly that yes, he had noticed that happening since about my fourth round of Vidaza, and I said, “Why didn’t you tell me?” He said very logically that he didn’t think it was anything that needed comment since there was nothing to be done anyway. Somehow, I had concluded that hair loss from chemotherapy would happen in a dramatic fashion, with hair all over one’s pillow, or coming out in the bristles of the hair brush, and in the absence of that, I felt quite pleased that this was not a side effect for me. Now it appears that my hair is just quietly leaving and I may be joining the other women and men whose cancer treatments have killed off the hair follicles. Some wear caps or hats, and some have determined to face the world au natural, and if they look unusual to you, get over it. Since it is obviously something that many people have accepted as part of the journey through the disease, it doesn’t seem appropriate to begin hand wringing, but I now am considering a bald self and it is not a pretty picture. Knitting daughter Janna and I have been visiting about a fine hat that would fit the skull and perhaps have changeable ornaments to add as the mood dictates

On this morning of Father’s Day, ’06, I am filled with delight and gratitude for life. My prayer of thanksgiving to God for present blessings is long, and it begins with the gift of Charles, who smiles and says that Hallmark invented this day to sell cards. I tend to disagree because most of the Father’s Day cards are illustrated with boats, golf clubs, fish, guns, cars, or ducks, showing a great lack of imagination in subject matter for fathers in general. I found a delightful card that was none of the above, and sadly, in very small print that I missed, it said, “Happy Birthday”. Unfortunately, his eyesight is far better, and it was the first thing he read, out loud. Tsk. I blacked it out with a felt tipped pen immediately, but the moment was already lost.

The litany continues: For a remission of cancer that has returned much of my energy and given me days of joy and happiness, Thanks be to God.

For children who have blessed me hugely with their concern and wisdom and for friends who come with books, food, companionship, stories, and encouraging words, Thanks be to God.

For the many people that care and the many voices that pray in unison and in still inner voices, Thanks be to God.

For a natural world that is mine to see and experience – sunrises, songs of birds and crickets, fireflies at dusk, red cardinals, orange orioles, yellow finches, bluejays, rose-breasted grosbeaks, and many more creatures and colors – all parts of a fantastic creation, Thanks be to God.

For kind and caring nurses, good doctors, and medicines that make it possible to move forward in hope. Thanks be to God.

And finally, for all those blessings that are mine that I don’t even know about, or don’t fully appreciate, Thanks be to God!

After the white blood count came out of the basement to a level that made human interaction acceptable, we have had a good number of visitors, including friends who have come many miles to say hello and how are you. Our conversations inevitably come to the subject of having an incurable cancer, and how one deals with that reality, particularly as it relates to God. “Are you angry at God?” one asks, and the answer to that is an emphatic “No!” because such an emotion would imply that God is the selector of who is to be afflicted and who is not. I think this subject is one which humanity keeps picking up and studying from all angles, and there never is a satisfactory conclusion. When we come to the unfathomable, it is time to move on in faith, letting God’s mind be the mystery it will ever be. Some contemporary writers who address illness and suffering and God will say that they consider the illness a “blessing” because then there are the prayers of so many, and the opportunity to review priorities. This is another very foreign point of view in my mind because I can’t ever consider pain a blessing. When I was researching an essay that I was writing, I read about controlling physical suffering as it was practiced in the medical community and was astonished to read that the concept of pain as a good thing carried on right into the early 20th Century. Then it was thought that it was either a sign that you were being punished by God or, if you were a good and upright person, a sign that you were being honed into a higher state by the gift of suffering. Women weren’t given anything to ease the trials of childbirth because it was thought that the pain would make them better mothers. And so on. What a fine thing it is to live now, when such ideas have been set aside, and a far more compassionate ethos rules. Both Charles and I agree that good things have come of the advent of MDS in our lives, and we give thanks for them; but we aren’t inclined to say that it has been a blessing.

I have been in remission for nearly a month, with good days and bad in that time. One of the things I have discovered is that the internal chemical wash of drugs means that I have to be very careful about imbibing alcoholic beverages; if I drink more that a small amount of wine, for example, I find myself having most memorable muscle spasms of both upper and lower legs as the night moves on. I have termed these “Liquor taxes” and have determined to resist more fully the temptations of the fine wines that have arrived at our house in the hands of friends and family alike.