March 31, 2006
March at Sanctuary ends with an indecisive morning – some clouds, a bit of wind, and lightness along the southern horizon. This day is the 106th day of MDS and we are hopeful in a new way. Hope, to me, has several levels; on the one hand, there is the overarching emotion that speaks of God and ultimate verities. On the other is the hope that has little fizzles of excitement around the edges where the natural impulse to quash (lest the disappointment is too great) doesn’t quite reach. When I went in for the blood draw the day after the completion of the third round of chemotherapy, the white blood cell count had gone up, and the red blood cell count was also higher; it seems significant to us because right after chemo, the cells are stressed out from the therapy. This might indicate some improvement! When I went into the third round of treatment, my white blood cells had gone to .985, hitting a new low. Thursday’s reading was 1.2, an appalling number as the count was on its way down, but now, as we see it again, one which holds promise. (Normal begins at 4.0)
The circumstances of my life are the same since the level of vulnerability to infection has not changed, but now there is the hope that a turn-around might be beginning. We had already had the conversation about not being able to take the trip to Russia in late June, and we have to make final decisions on that venue very soon. We’ll “do the numbers” after next week’s reading and see if there are portents for the future.
The cooking lessons go on, and Charles has mastered chicken and steak on the grill, steamed vegetables served with lemon and butter, and the top half of home made pizza. Breads are to be tackled next. Charles has a natural inclination to clean up after using each utensil while I have difficulty with this obvious virtue. To me the meal must be served hot at all costs and the kitchen counters can be completely covered with the tools of construction when I serve. While eating at just the right time is grand, getting up post meal and entering a kitchen that has already been cleaned is pretty swell also, so we shall strive toward a middle ground. We have been having merry times dealing together with these matters and the cook book continues to expand.
“Congratulations!” said Charles as we drove away from the oncologist’s office, “last injections for round three. . . we should celebrate!” So we should, but alas, by this time I have picked up some nausea, nasty metallic taste in the mouth, and the kind of general aches that one might associate with flu. Every injection site of the past seven days has remained sore and tomorrow I commence the Neupogin injections. It’s definitely a “Hold the champagne” moment. I did go for a walk through Sanctuary enjoying earth beneath my feet after experiencing snow for a week. Alphie was ahead of me triumphantly carrying the long dead and moldered remains of a raccoon which he somehow unearthed from beneath a cedar tree, and the meadow larks were singing all around along with the many other birds which have resumed their nesting activities. Everything in the meadow and the forest seems pleased with the moisture that has come and life abounds there. 
This past week has been another time of rethinking the future. It stuck me in the predawn hours that how I feel now may be the new “normal”. Already the litany of activities lost is a chant that I have to consciously tune out or I become dreadfully sad. Vicarious enjoyment of friends’ and family travels is enjoyable, true, but a great distance from the actual experiences, the pure fun of teaching little children songs and Sunday School lessons is presently out of reach. . . and on and on. The antidote comes with melody and words – all the years of playing hymns and reading texts have left a gathering of fragments of verses and tunes. Today’s words speak from “There in God’s Garden” (an old text from about 1641 and set to music by K. Lee Scott)
When we were in the oncologist’s office, while waiting for the Vidaza to be mixed, we were in the waiting room, and sitting right across from us was a man who had a space carved out of the middle of his forehead, right between his eyes, about the size of an egg. It was sealed with a plaster of some sort which lined the indentation. We conversed with him and his wife in the usual generalities, and I tried very, very hard not to stare and quashed the voice in my head that was asking, “What sort of awful thing happened to your head?” or “I had no idea you could live with such a large indentation”. Now, I think it might have been better to figure out a way to make reference, but we were called to the chemo room before that happened. My Vidaza shots were given in the abdomen since the two arms had been “used” and were still very sore. This round of chemotherapy has been more painful around the injections, but my side effects are not bad at all. 
Today, since Charles always is at church by 7:00 AM, Heidi got me and drove me to Lincoln for my fifth set of injections. From there we went to church, sitting in the corner of the balcony and trying to look as unwelcoming as possible. This is completely contrary to the whole experience, but no one came near, and it worked out well. It was pure pleasure to hear the music, sing the hymns, and be a part of the community of believers directly rather than through an electronic medium. In the prayers, I heard the pastor say, “We come, not as human beings having a spiritual experience but as spiritual beings having a human experience.” That phrase was particularly captivating to me as it invited moving out of the confines of the physical self into a much wider spectrum where bone marrow and white blood cells and immunities are no longer front and center. As Charles would say, “Onward and upward!”
When I dutifully took deep breaths as instructed I began to cough again; and the nurse disappeared for a bit, returned and said, “The doctor says that we must continue the chemotherapy, but we are going to have to give you Cipro as a prophylactic.” “Oh” said I, (blink, blink) “I’m going to need a prophylactic?” Now in my life’s history I had only been introduced to that word in one context, and my poor brain was scrambling for meaning. While life has had its moments of spinning out of control, this was off the map. With a smile that indicated that she had an inkling about where my mind had gone, she continued, “Cipro is a broad spectrum antibiotic, and since we really can’t count on your white cells, we will give it to you as a preventive measure so you don’t end up with pneumonia.” Later, when I checked, the dictionary indicated that my previous knowledge of the word’s meaning was sadly in need of updating. 
Cipro’s warnings of side effects covers several pages, and the nurse said the most common of these was becoming tired from taking it. I thought, “Ah, sweet Monday when I had energy!” I sent my thoughts toward the insides of my bones and gave a small lecture. “Just see what we are going through now, in addition to the chemical onslaught, now there is more to contend with. . . if you would just crank out some white blood cells, this wouldn’t have to happen.” Actually, I direct great sympathy to this mechanism in which I live; I know that it is doing the very best that it can with the resources with which it must work. 
The mails continue to bring cards and letters with their fine messages of prayers and well wishes. One from a dear friend was illustrated with a fanciful winged creature, and she wrote inside, “May your journey into unknown spaces be carried on wings of love”. As I read their words of encouragement, I recall the people sending them on, and the house fills up with the sounds of their voices praying, encouraging, and cheerleading. It is wondrously comforting to know that we are not alone in this “journey into unknown spaces.”