March 10, 2006
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. 
The grand sounds of spring came to Sanctuary yesterday. There were meadow larks at dawn, and chains of wild geese flying overhead all morning calling out instructions to each other as they passed. In the afternoon, the red winged blackbirds came back to claim their territories from the tree tops while the cardinals have already been very actively singing out their spaces for several days now. I read that birds can share trees with other species because they live at different levels, but they must let others of their kind know what is theirs, hence all that marvelous song. 
Today, as we cross the meadow on a walk, I am leaning heavily on Charles’ arm and we are moving very slowly. “What a life!” I say sadly. “Yes” he says firmly, “and it IS a life. . . with options, including long-range ones”. After a bit, I say, “I would suppose that they have wheel-chairs in Russia” and he immediately replies, “Of course they do. . . at the very least, those big wooden ones with the high backs.” We are both smiling as we conjure up our own mental pictures of the possibilities. 
A Port
That led me to consider the possibilities of “ports”. One can easily imagine lots of the little things discreetly placed on the body; one to house the tiny iPod, perhaps, one for a cell phone, or little fingertip cameras. Just think of the convenience! 
As these days pass from winter into spring, I think about thoughts and prayers and their power and presence in my life. My latest way of attempting to visualize this is as great threading of thought that makes up the security blanket that wraps me round. In spite of the incredible ups and downs of spirit and physical being, at the end of the day I feel calm and hopeful, able to count and see the incredible blessings that are mine – a loving and caring God, Charles, children, friends, doctors and medicines and therapies – on and on. . . even Alphie, with his need to run through the woods insuring my exercise and connection to the beautiful place of my abode.