Writings of Constance Ore ( 1937 – 2010 )

With today’s fourth round of injections, I have now crossed over the half-way mark of the sixth session of chemotherapy. It has been going very well, without any new side effects. The recurring hot flashes, itching sessions, fatigue, aches and pains are familiar responses and have gone away after some days have elapsed, so they are no longer frightening. The overarching emotion is an ongoing delight about the remission; while I thank God each morning for the wonder of the single new day, a molecule of hope is dancing a happy jig in my brain and beginning to whisper about a remission that could go on for years. I got out the Vidaza booklets and read all the tiny, tiny print about the first trials and the ongoing results in hopes of finding some indications of this possibility, but it is all too new, and longterm outcomes are unknown. This last day of June is the 196th day since the appearance of the MDS.

Today it was very hot at Sanctuary, at 98 degrees with a south wind bearing air it must have summoned up from the Equator. The grass crunched underfoot when we walked and cracks are beginning to appear in the earth. One would think that the mosquitoes would be sitting the day out, panting somewhere in the heat, but alas, they were very interested in the blood bearing flesh moving past. Fortunately, my virtual bath in repellents protects me from their evil intents.

Today I began the sixth and last of the series round of chemotherapy. Yesterday evening, when I walked in the woods and began to think about the upcoming injections, my arms began to ache in anticipation. It was Pavlovian, I think, with the brain leading all the way. When I arrived at the oncologist’s office at 10:30 AM, there was confusion and delay because two new people were being trained as receptionists, and one had apparently recorded my visit incorrectly, so nothing was in readiness. I ended up having to have two blood draws rather than one but after that, things became routine. When I waited for the Vidaza injections in the chemo room, one of the women suddenly said very loudly, “This chemotherapy is poison! I’m not getting another drop. . . I just read in the paper that some children in a Cleveland hospital were given chemotherapy and it killed them.” There we all were, some with IV’s in place, and some waiting to begin. . . a man across the room said, “Well, I think these medicines come from plants that are poisonous, and if we ate them directly, it probably would kill us, but this way they can help us.” A nurse hurried in and began to visit with the woman, and calmed her down. My blood readings were almost all normal, looking better than ever, so I wasn’t about to raise my voice in complaining. It does seem to be an unusual route to healing, but I am tremendously thankful that someone figured it out.

Charles has acquired a new telescope that he has been assembling over the last few days. According to the wonderful words that accompany it, we will be able to see fabulous heavenly things including the Rings of Saturn and other uncommon sights. We will do our viewing from the roof, and we will hope for dark nights and clear skies full of planets and stars.

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