Writings of Constance Ore ( 1937 – 2010 )

Gifts still await opening as they reside under our little Christmas tree which we cut out of the ditch next to the road and near our driveway. It was doomed by its unfortunate location, so we determined that it would spend its last days bearing lights and tinsel and standing on a table in our great room delighting the senses of all who enter there. The entire family will finally be together tomorrow, so it will be the day of gifting and eating traditional Ore holiday foods.

Alphie is using his mended knee most of the time, and his surgical incision is healing nicely. We were told that he absolutely must not lick this part of his body even though it is the first instinct of the dog, and should he be unable to resist the urge to do so, we were to put an “Elizabethan collar” on him. This is a piece of plastic the size of a large lamp shade. Of course Alphie wanted to lick the wound, and at first we tried wrapping fabric loosely around his leg, as well as bandaging, but to no avail. Finally, we tried the collar, and the poor dear went berserk, swinging his head about, bumping into doorways and furniture and knocking flowers to the floor. In a short time, it was too much for all of us, and we took the thing off and called the vet to request Plan B. Fortunately, there was one, and that was a bandage that actually stayed on his leg with a spray to put on the bandage that tastes dreadful. (It should have been Plan A, since it worked perfectly and could have saved us a good deal of frustration and one very nice orchid.)

I have attempted to push all thoughts of January, 2009, back into a corner of my mind since the upcoming bone marrow draw, the placing of the port, and the beginning of a new course of chemotherapy all take place within the first two weeks of the new year. The bone marrow reading will tell us the percentage of “blasts” in the blood, and whether I have moved on to AML. (Acute Myeloid Leukemia) Twenty percent and above are usually the markers for that condition; when I began the disease, I had 18% blasts, and the Vidaza knocked that back to 0.5%, which was wonderful. At my last bone marrow reading, about a year ago, the blasts had returned to 10%, and it was at this point that the oncologist stopped the Vidaza because he felt it was losing its effectiveness and was also beginning to make me quite sick. When the illness did not proceed as the doctor anticipated that it would, he declared that it was taking a “time out” and that has been the gift of 2008, a wonderful time indeed. Now I am returning to the fray, this time with less options and an older and weaker body. It is daunting and sometimes I am afraid, however, only time will tell how life will go on, and as ever, I defer to God’s ultimate plan. Meanwhile, there is tomorrow, and that will be splendid!

Today we took Alphie to the veterinarian for his knee surgery, comparable to the Anterior Cruciate Ligament (ACL) procedure in humans. We received the call not too long ago that it was successful, with the removal of the frayed ligament, and the implantation of a synthetic ligament in its place. We will pick Alphie up tomorrow and get instructions about how to give him physical therapy. The hard part will be applying a diet which he must begin in order to take the stress off his joints. I have no clue about what the dog brain absorbs of all of the above, but we will do our best to help Alphie achieve a complete recovery.

Our Christmas celebration will begin “as usual” with Charles playing for a Family Service early on Christmas Eve, and then at 9:00 PM for the beautiful Lessons and Carols service complete with processions, brass, choirs, and candles. I will go to the latter and remember, reflect, rejoice and be thankful. The music written for Christ’s birthday celebration down through the ages is often the best expression of each generation, and it is always new as it sounds through instruments playing in the present and rises again on the breath of voices singing on this holy night.

Christmas Day starts out quietly at home, and after breakfast, we read the portions of the Scripture that relate the events of Christ’s birthday. Later, we’ll feast on roast goose in a remembering of our childhood celebrations, and as the days follow, the entire family will gather. Then the house is filled with singing, children dancing, piano playing, story telling, feasting and games. This is a time that sends us onward into the new year armed with memories of the delights of children and children’s children. We feel the continuum of life as we remember our own grandparents and parents, and we see the new lives following us on the march through time.

I wish that all of you will have blessed and happy Christmas celebrations, too, and a 2009 that contains health and prosperity and hope and promise.

Today is Charles’ birthday, and we celebrate with delight an active musician’s life. This last series of days has flown past with myself on a Prednisone “high”; a lovely little space of time in a body that I used to live within without a second thought. I was given the medication by the pulmonarist to stop the coughing, and it not only did that, but also removed the exhaustion, aches, etc., and gave me days of feeling really fine. Of course, it can’t go on at the high dosage level because it commences to destroy the liver, etc., and leaves one with a system far more trashed than before, but for a respite, it has been heavenly. In three days I will have completed the course, having come down from the high dosages bit by bit, but I am hoping that there will be a residue of good feelings to carry me through Christmas.

On Tuesday of this week, we visited with the oncologist and began the plans for what will happen next. The disease is active, as we have all known, and the doctor determined that I have been away from chemotherapy long enough to try over again. I will do a bone marrow draw on January 6, Epiphany (the opening day of the season of Light and therefore most auspicious) and then begin at least three series of five day intravenous applications of Decitibine. This is a parallel drug to Vidaza, the treatment with which I had good success, so the hope is that we can buy more earth time. On January 6, 2006, when I received the first diagnosis of MDS, the life expectancy was limited to just months, and now here we are moving on after three years! The new drugs which came out shortly before I was diagnosed have made this possible for a number of people, and I am very blessed to have been one of them; the territory ahead is unexplored, so what happens next is not known.

Winter grips Sanctuary in extreme cold with promised freezing rain, sleet and snow this afternoon. We have stocked up on popcorn, wood for the fire, and materials to complete Christmas cards and make cookies. Alphie is lying about because he now is limping with a hip problem; he will have X-Rays and possibly surgery next week, so perhaps his Christmas gift will be a new hip. We were told when we got him that his sires did not have this difficulty in their blood lines, but the vet said that there just isn’t a way to tell when or how it happens. Some large dogs develop weaknesses in spite of all else, and dear Alphie is one of them.

Miracles abound. This is the birthdate of eight year old twins who brighten the world around them even as they discover it. At their birth, each little head could be held in the palm of my hand with fingertips showing – on this day it is difficult to imagine such small beginnings as they dance and sing and read and make music and run and shriek and laugh and cry. Newly crafted humans are ever a delight!

Our leaden skies and cold winds from the north provide great impetus for putting out lights and bright red ribbons on evergreen boughs. Alphie and I walked before dawn this morning, and as I listened to the fierce north wind in the branches of the honey locusts on the hill I thought of all the poetic words used to define that wintry sound. When the ears hear the moaning pitch, and the face feels the rush of cold, the body hurries toward shelter and warmth. There was a bit of snow that fell last night, so we had light color under our feet even as the dark sky hovered. Now the bright red cardinals are a visual delight at the feeders and many birds are out eating, all nervously keeping an eye out for the hawk which has already made two appearances this morning.

Meanwhile, I started into a course of steroids as prescribed by the pulmonarist to address the throat and cough. Last week, the Cat scan revealed what I didn’t have, but apparently didn’t define what I do have. The antibiotics were stopped with the cautionary words about developing super bugs that will be unstoppable when only antibiotics might help, with the words, “and then you would be toast” which I thought to be very effective. Somehow, I had been under the impression that the antibiotics were throwing up a defense against interlopers while the immune system is no longer in place. I was very strongly told that this was not a correct assumption, so I flung the pills away, along with my faith in their usefulness, and carried on with the inhalers only. The cough and throat got considerably worse yesterday, so on to steroids. I don’t think I will be consuming them long enough to get big muscles and puffy cheeks, but if I do get a great surge of energy, I will leap right into the pre-Christmas cookies, decorating, and other taken-for-granted activities of the past.