March 14, 2006
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. 
When Charles asked me yesterday if I would consider teaching him how to do basic cooking as well as make some of the foods that are family favorites, I immediately become “verklempt” (Heidi’s word for “all choked up”.) Very shortly thereafter, the idea struck me as a wonderful one, and I enthusiastically said, “We’ll start with homemade pizza!” Charles said, “I gave you organ lessons, and that worked out well, but we didn’t start with Bach’s big fugues, either. . . how about starting with learning how to fry an egg, and going on from there?” So hopefully, a new cookbook for a non-cooking gifted musician will begin to evolve. 
The red blood cells got their weekly “fix” of Aranesp yesterday, and today is a good day with energy. Spring at Sanctuary beckons and the bird songs have become clamorous. The maples and willows have buds, the ends of the wild plum branches have turned purplish in color and green is becoming the predominant color out in front of the house. I took Alphie and the neighbor’s chocolate lab for a run across the meadow and through the forest. . . their exuberance in playing, “Catch me, catch me!” is so grand. . . ah, energy! I have preceded this spring day with a lifetime of never thinking a moment about red blood cells gathering up oxygen and delivering it to muscles to keep the human machine moving along at a good pace and when I recall the psalmist’s words. . . “because I am fearfully and wondrously made” I can’t help but consider how tremendously complex is my being. It is wondrous and fearful indeed. 
It was rainy and gray, good for the land, not as good for the spirits. We picked up Heidi and arrived for the first blood draw by 1:00 PM. The Med Center is huge and teeming with people of all ages, and one supposes that the subject is principally cancer. We were shown a video about stem cell transplants and it augmented the written material we had read. Then we met with Dr. M. DeVetten, a highly respected leader in stem cell transplants and in MDS. He was a little man, not much taller than myself, with a turned up nose, and very keen light brown eyes. He had the already substantial folder on my medical history with the illness. We visited again about its’ beginnings, diagnosis, and present treatment. Then we spoke of options. There aren’t many options, just three. The one, which everyone has, is to do nothing, and that is unacceptable because it would be inviting death’s arrival as surely as driving a car blindfolded and at a high speed in heavy traffic. The second is the chemo therapy of Vidaza, which I am presently doing, and the third would be pursuing the stem cell transplant. 
We talked everything through again, and at this time, we simply do not know what the future holds. Always, the percentages of surviving the disease beyond a year hover around 25% – 30%. Therein lies the hard part. One of the key indicators will be the next bone marrow aspiration at which time the “blasts”, those useless white cells, will be measured again. If they have increased, it will mean the Vidaza is not working as well as it must, and a stem cell transplant would be the only remaining option. How great the wisdom of our lives getting launched without the termination date stamped on the underside of our arms! Now I am thinking of all those conversations that have begun, “If you had only a year to live. . . . ” and how the thoughts could spin about and one could enjoy the possibilities because they never really applied. On the way home, we once again affirmed that we had hope in the future because of our faith in God’s ultimate plan for us. . . . a lifetime of care, great gifts, good days. . but oh my, it is not easy.