April 11, 2007
Last Monday was a “Set Aside Day”. These are times that Charles has so named because they are taken out of our routine pattern and include adventures out of the ordinary. We were in Denver under a beautiful sky in wonderful temperatures and with good friends. We drove into the mountains to have lunch, and in the evening our friends took us as their guests to the NBA Basketball Game at the Pepsi Center. The Denver Nuggets were playing the Los Angeles Lakers before a crowd of about 19,500 people. There were so many amazing things about this event – the assumption seemed to be that the general attention span would be around 10 seconds so there was constant sound and movement in the vast space. For one example, from a catwalk near the ceiling, T shirts were randomly parachuted down into the masses of people, with one carrying a free ticket to fly on Frontier Airlines. And so it went – the crowd dynamic was a huge, rumbling thing drawn together by loud pulsing music much of the time, and instructions on huge screens in the center of the arena led the people in cheers and roars at certain times during the game. There were cheerleaders and dancers and at the half, a woman on a very, very tall unicycle balanced while tossing bowls with her right leg upward to land on top of her head. It appeared to be an extraordinary feat and everyone rewarded her with ooohs and aaaahs.
A particularly riveting event of the evening was the appearance of a group of older women calling themselves the “Silver Hotties” who came out and gathered in a formation in the center of the floor as the younger women had earlier, and proceeded to do a routine to loud music, shaking their various body parts and flinging and swirling gray hair about. It was not really a sight to write home about, and I was taken by two thoughts. One was looking at the beautiful and buff female dancers, scantily clad with generous cleavages and long hair as they sat on the side observing their elders and wondering if any of them would think that one day they too would try to relive something long past and gone. The other thought was imaging reaching a certain age and one morning standing in front of the mirror, smoothing the eyebrows, putting on the lipstick, tossing back the gray hair, standing sideways, hand on hip and looking just so. Then, having reached the conclusion that by golly, I’ve still got it, going to the telephone and arranging an audition with the Silver Hotties with hopes of dancing right into belated fame and glory. It did make me smile.
Today the blood reported that my white cells are still on a trek downward, and I will need to delay a planned Friday morning cataract operation as well as begin to wash the hands and take precautions because I am immunity challenged again. I will resume Neupogen injections to see if the blood can improve a bit and after five days another blood draw will direct what happens next. I try not to think very deeply about this because it becomes a fearful thing – rather, I continue the conversations with God and hope for the best.
(Next entry: April 16)
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! 
Sanctuary’s plant life is hurtling onward into spring led onward by the greening of the willows and the budding wild plums. We have had slow rains and warm temperatures to encourage this early start – and since we do stop a step or two short of perfection, the season’s first tick arrived on Alphie’s coat yesterday afternoon as well.
What a strange and portentous gathering of events – even after years of consideration, its manifestation of deity/flesh, death/life, wages of sin/payment achieved and life extended into eternity remains a mystery that can only be addressed by simple faith. Today, the boxes of palm fronds shipped up from warmer climes are standing in coolers awaiting the transport of children’s hands at tomorrow morning’s processions to the sounds of “All Glory, Laud and Honor” played in various degrees of grandness by musicians everywhere. Thus Holy Week begins to take us through the dark and solemn days of remembering pain and death and sacrifice to conclude with the grandeur of Easter Sunday’s joy and delight.
Next Tuesday morning we approach the Medical Center in Omaha with many questions in hand concerning the Vidaza, the course of the disease, and the possible options available to us. We are ever optimistic – this season of new life everywhere, bearing fresh and new color and energy after a winter’s time of darkness and rest cannot help but beckon us onward into good days ahead. 
Alphie stands and waits for me at the edge of the forest as I come puffing up the hill so I tell him that the round of Chemotherapy just about did me in this time, and I am walking as fast as I can. He looks pretty noncommittal at that information, but the books say that he understands at some level. We make it around Sanctuary on this very warm spring day and he concludes his walk by leaping happily into the water in the stream nearest our house. It is not clear and lovely as one might hope, but rather, it carries in it all manner of agricultural debris from the fields to the east, so when he comes out he bears a scent which can be most kindly described as “earthy”. I suspect that he would describe it as “lovely”. All this takes place to a cacophony of bird song coming from every corner of the property and of course, the frogs’ chorus goes on. 
I have been reading information again about MDS because I can’t understand why the side effects of the seven days of injections of Vidaza vary so greatly from one time to the next. This session was nasty – was it the temperature? The winds from the south? The time of the moon? The blood readings were very nearly identical to those of the last time, and I felt well going in. So far, I haven’t found any words addressing this, but rather have seen lists of side effects that let me know that I haven’t experienced nearly everything possible. (The list from Mayo Clinic runs an entire page – alas.) I have an appointment at the Medical Center next week to ask about this and more. Even though we have great gratitude for the days already lived, there is still a need to seek out information about the future.