April 4, 2007
What a day! Yesterday began with a walk with Alphie in the waning moonlight before dawn because we had to be in Omaha by 8:00 AM for the inevitable blood draw. We met the doctor at the Lied Center for Hematology/Oncology at the Medical Center in Omaha at 9:00 AM and she (a beautiful woman with intern in tow) spent an hour with us during which time only my question about whether perhaps the whole experience was just a terrible mistake was answered with a definite no, unfortunately not. In her responses to all other questions, our daughter Heidi who accompanied us commented that this woman was “perfectly vague” in that she was able to tread right down the center line of non-committal. We were told that I am the only person of my age and symptoms out of all those treated at the Med Center who responded so completely to the Vidaza and therefore am still alive after this number of months. There are no statistics, no studies, no data because this is so singular and new. There is no information about what lies ahead. The greater severity of this round of Chemotherapy could mean that the cancer is coming back or that I have too much toxicity in my system. . . meaning that either I might need more chemo, or less. We got the feeling that if I died today, there would be beaming doctors saying, “We had this woman who was able to live for15 months!” (instead of the former four to nine months)
There is no way to know if the Vidaza/body can go on for a short time or a long time. As I have said before, the secrets of the stem cells are kept hidden in the bones, and only a bone marrow aspiration will be able to provide information indicating the present status of the disease. My understanding is that we will wait a little while to see how long it takes the body to climb out of this hit and then make some determinations on what happens next. Bone marrow aspirations cannot be taken too frequently for obvious reasons. There is another therapy parallel to the Vidaza that could be used, however, it consists of the same chemicals and works in the same way; it is through IV rather than by injections, so it would have the advantage of relieving the arms and abdomen of the stress of medications flowing through the tissue there. The skin peels and bruises and that too has a finite capacity.
I have many things to think about. There is most certainly boundless thanksgiving to God that I have been given the gift of continued life in this place and time. It is clear to me that the love and prayers and concerns of my dear ones and the wider community have helped me in uncountable ways. There was delight expressed that I am having even a few good days each round. This always strikes me forcefully; the attitude of the medical community toward what life might be like living inside of the illness. I conclude that for most of the people they encounter, there is far more misery than has been mine. If I decided to continue those good days and not do the scheduled chemotherapy, I am told the disease would surely advance and there would be no coming back. I signed papers permitting the Med Center to use the information about the illness and me in their case studies data.
The world moves onward as it did yesterday and the day before, and Easter comes again bearing hope and good news. Eggs are colored, meals are readied, and Charles and his contemporaries are rehearsing beautiful music all around the globe – from the quiet melodies directed toward Maundy Thursday to reflective and somber sounds of Good Friday through the best sounds of grandeur following the rising sun on Easter Morning. There will be thousands of “Alleluias!” sung in many tongues and tones – I get to be a part of it once again, and it delights me entirely!
(Next entry: April 11)