March 18, 2006
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!”
When the phone rang yesterday morning, and I answered it, the woman on the line said, “Hello, Mrs. Ore, how are you today?” I croaked in response, “Not at all well.” She had called for some information, unaware that I might be unwell, and it reduced her to “Oh dear’s” and “I’m so sorry’s.” A cheerful response to the “How are you” inquiry is almost a requirement to social congress, but yesterday I was miserable. My cold had added aches and coughs to the deep weariness, and my spirits were so depleted that when our daughter Janna asked on the telephone what we would be doing for the day, and Charles listed his activities, then mine, (“umm, well, your mother is going to be calling the doctor. . . “) I began to cry. A Monday morning, and my total output would be dialing the telephone! There is relief all around that I am not running a fever, and my instructions are to drink fluids in great abundance, plus treat other symptoms with “over-the-counter”. When the nurse said, “Now if you cough up blood, or the pain in your lungs becomes worse, be sure and call” I just stood with my head against the wall and thought, “misery, but as usual, it could be worse.” 
I am not sure the physical is much improved today, but the spirits are stronger again. Perhaps it is like the sagging arms of Moses as the struggle goes on. . . and the gathering of thoughts and prayers are like Aaron and Hur’s holding them up until the sun sets and the battle is won. On this day, with my supervision, Charles is going to bake a birthday cake for Janna who arrives tomorrow to spend two days with us.
Yesterday morning I came down with a cold. So far, no dreaded fever, but mercy! I have been trying very hard to avoid this, and I can certainly see why it is not a desirable thing. . . and of course, there is no way of knowing which moment or misstep in hand washing took place to bring germs home to roost in my body. The level of tiredness is greater than one might imagine – I see the greatly depleted army of defending cells mustering as best they can to deal with the unwanted invaders. I will call the oncologist’s office tomorrow to see what this might do to my scheduled third round of chemotherapy which is to begin next Thursday. 
Charles had his first cooking lesson yesterday. He made a roasted chicken on the spit using our outside cooker. I thought about how to write the recipe so that someone who hadn’t considered exteriors or interiors of raw chickens before might deal with the project. There were moments when the hands that move so effortlessly over multiple keyboards struggled with wrapping trussing strings around the slippery, prone object with its non-cooperative appendages, but it turned out well and we both were delighted with the outcome.