December 18, 2008
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.