Writings of Constance Ore ( 1937 – 2010 )

Spring came in a snow storm this year and my life appears to move forward in contradictions as well. For the first time since Christmas, I felt energy almost equal to the former life and it made my heart sing. . . I enjoyed greatly doing some household chores and hauling large buckets of bird seed out to the beleaguered birds that gathered in huge numbers near the feeding stations. They came from every direction through the blowing snow to share the food, setting aside their territorial rivalries for the moment.

This morning, when it was time to return to the oncologist’s office for the blood draw, I was certain that there would be progress. In a way, there was, because the red blood cell count is up and providing me with energy, but sadly, the white blood cell count continues on its way downward. The immune system becomes yet more compromised and I was encouraged to keep track of my temperature since that will be a sure indicator that the defenses have been breached. Now it is not only the world at large that is a threat, but also my own body with its garden of microbes and bacteria that might seek to do me harm. It is too difficult to comprehend; I asked, “How am I to live each day?”

The instructions remain the same, stay away from public places where there are crowds of people, avoid the ill, wash the hands and never touch the mouth, nose or eyes because those are the entry points for sickness. This spring I may not garden because the soil carries all sorts of tiny bacteria or spores which when inhaled by someone as myself could cause awful illness. Then there is always the addendum, “Of course, you can’t stop living. . . you just have to be careful.” So I walk out thinking, “Don’t touch the doorknob, be careful about the car door, quick, wash the hands with Purell, egad! My eye itches. . don’t touch the eye!” I hold Charles’ hand, “Oh dear, he touched the steering wheel, and who knows what’s on that. . . wash the hands with Purell again, etc., etc.” It was a relief to get home and announce, “Today for lunch, Charles, I will teach you how to scramble eggs in the French manner” and so I did. The food was delicious and another page was added to the cookbook.

Today has been a four star, red letter, two fox day! I am looking out the window now at heavy snow falling and blowing past the windows – earlier I watched a fox pick its way across the edge of the wetland in front of the house. Later, another sighting on another side of the house. . . it was likely the same creature, but fox are so elusive that it took the snow fields to make this a “two fox” day. Then, at noon, son John-paul called from London with happy words about his adventures there, and shortly thereafter, dear friends called from Egypt as they floated down the Nile in the evening. Imagine, voices from across the world, coming here to our house – arriving intact and clear after being uttered time zones and miles distant and being dismembered into tiny electric impulses for the journey, then reconstructed into familiar greetings for my delighted ear. So on this day I stood for a moment at the Tower of London in a chilly day and viewed pyramids and palms from the ancient river in a warm and sunlight place. How lovely to have the thoughts move out and away!

When the nurse called yesterday to tell me that the insurance had approved a tissue match search for me in pursuit of a stem cell transplant, I was taken aback. She then asked for my brother’s telephone number so she could call him to find out where to send the “kit” which would be used to type his blood and to see if he would be a possible donor. I had to tell her that I had not yet mentioned the possibility to my brother and therefore I would need her to call back at the beginning of next week. After hanging up the telephone, I realized that it was time to make some concrete choices about this possible action. We had talked at length about our impressions of the procedure, and about how the doctors had not softened the details of the possible outcomes. We were told that should I wish to pursue a stem cell transplant, it would be best to begin the preliminary work immediately, but on the other hand, the Vidaza therapy has not had enough time to show whether it is going to be effective. Now, after spending a good deal of time gathering information about the procedure and thinking very hard about how life would go forward if it were successful I have determined not to pursue the option. The family is in agreement with this decision.

The question that I have considered sounds like this: “Would I want to continue life on earth at any cost?” From my readings and from the doctor’s commentaries, it appears that a very high percentage of people continue life in misery, and no life goes on as it did before the disease became a reality. This is particularly true as age increases. I don’t know whether I will be content with this decision if or when I may be facing a shortened life because I closed off the option, but fortunately, the future rests In God’s hands, and I’d rather have it there than in any other place.

Today winter came back to Nebraska, and today we drove in to visit with the oncologist in Lincoln. My cough is still present, but it appears that the battle with the virus is slowly being won. Nonetheless, the doctor determined to wait a week before resuming the chemotherapy for fear that as it begins its work and destroys good white cells along with the useless ones, the virus could triumph and pneumonia could set in. More viewing of blood counts, and the doctor concludes that the bone marrow still keeps its secrets closely guarded. There is no way to know what is happening; it will take several more rounds of chemotherapy and a bone marrow draw to get an idea about the efficacy of the Vidaza. Because the white blood count has not changed much for the better, it is presently unclear. All of us reviewed the stem cell transplant information and the general thought is that it is not a very viable option. I think it would come down to how badly one would wish to continue life on earth.

Daughter Janna flew here yesterday to spend two and a half days with us, leaving her daughters at home in the care of their father. The skein of threads that fashion the bonds between mother and daughter can be a complex one. Much is strong and beautiful, but inevitably there are knots and tangles that have been set aside for fear of unraveling the good along with the difficult patches. We had time to sit in front of the large windows looking out over the awakening wetlands and talk and cry a little as we spoke with great honesty to one another. So I have to celebrate another gift of this new life; the opportunity to unknot, smooth out and move on in greater strength and beauty.

The March skies here are filled with clouds moving rapidly across the sky, and in their passage, there are momentary breaks permitting bright sunlight to illuminate everything below. Seconds later, clouds close again, but the memory of the brightness lingers. So it is for me as each day brings reminders of the caring community around us. One day a card, yellow like sunshine, on another, a bouquet of white and yellow daisies, or a wonderful letter, an e-mail, a telephone call or a response to this blog. To these bearers of light, people taking time to listen, to cheer on, and to speak of hope and grace and God’s unfailing love I say “Thank you so very much!”