March 3, 2006
March 1, Ash Wednesday, marked the 75th day anniversary of sitting at the table and feeling the great unease and depression as I was sending out Christmas cards. It was the beginning of my new life. This is both a long time and a short one, depending on the measure. . . not quite the “90 days in jail” which used to be the norm for punishing all kinds of misadventures in the days of my youth in Iowa, but far too long for a visit by even the most beloved relative.
The blood draw yesterday again indicated that the disease remains active. It has taken a while for me not to regard this weekly check as sort of a test, where surely, improvement would be shown. It is the teacher brain, I think. . . try hard, do your best, and you will do better next time. Harder even than the reality of no immune system is the life of the low hemoglobin count, where the absence of red blood cells to haul oxygen around means that one is always, always weary.
Yesterday an appointment was set up at the Med Center in Omaha where an acknowledged leader in MDS treatment practices. It is quite fine to be so near such a center, and we will begin next week on this part of the adventure. The nurse calling me asked me if I had any siblings should the possibility of a bone marrow transplant arise, and I said yes, two, one has disabling rheumatoid arthritis, and the other appears to enjoy good health. She said, “How old is the healthy one?” “He is seventy” I replied, and mentally added “happily living his life and minding his own business unaware of the future’s possibilities.”
Early this week when I took the morning’s first look in the mirror I determined to get a hair cut no matter what the consequences. The hair had long since grown past its original design and started each day dispirited and dreary, flopping about without knowing quite where to lay. I had tried parting it, wetting it down and putting gel in it. The end result would be that the next time I saw it, it would have gotten into the most astonishing configurations, none of which left a positive impression. Some time before, I had called the woman who cuts my hair and explained that I would like to come into the shop before the regular day in order to avoid possible sneezes and such, and she promptly came down with the flu, canceling the possibility. This time all went well, and the improvement to my appearance is positively uplifting. Charles, who routinely has his head very nearly snipped clean of all hair said, tongue in cheek, “Now you know how I feel when I get my hair cut”. Hah. It is amazing how the taken-for-granted parts of one’s former life can become so grand!
This morning, after driving in to the hospital for the second of ten injections of Neupogen, I decided to stop by and fill the tank of the car at the local station. The attendant and I know each other well from many such meetings, and when he said, as usual, “How’re ya doin?” I had the absurd urge to say, “Not very well, actually. . . I have cancer now.” But I didn’t. “Fine, and you?” the well worn response. We had the usual exchange about the weather and its possibilities and the cheerful, “Take care, now” to conclude the conversation. I thought about that all the way back to Sanctuary – how we sometimes keep up the facade because we don’t have the energy to put it down. 
After I arrived home, it took great energy to get the car door open, and there was a sudden burst of resentment toward a body so dreary and depleted feeling. I determined to walk up the stairs like I used to. I took a deep breath and went up fourteen steps just like that. . . when I arrived at the top, the backs of my legs felt as though they were considering giving way, and my heart commenced to pound enormously. I promptly laid down on the floor and breathed air in with great gasps and waited until the heart calmed. When I got up, it was to walk on very slowly to a chair where I could sit and contemplate how some of life’s lessons need to be relearned upon occasion, even if they are obvious. “For everything there is a season, and a time for every matter under heaven: . . . a time to break down, and a time to build up” Ecc. 3:3b. It doesn’t exactly say “a time to schlepp”, but I think you could fit it in. 
There is something about the weekly blood draw. . . in a way it is a progress report about how the battle between the disease and the therapy is going. Because chemotherapy destroys both the good and the bad cells, there is an expected setback after each round of the treatment, however, it is my understanding that the desired outcome is that the numbers will slowly increase and that the lowest point will begin to rise up off the floor. On the far right side of the laboratory printout is the “Reference Range” which announces what good readings should look like. For example, WBC (white blood cells) should read 4.0-11.0-K/uL. Anything below that count is less than ideal, and as the number decreases, the severity of the illness increases. 
I was told that the four most significant markers were WBC, the neutrophils (these are the cells that rush out to meet infections) the Hemoglobin reading (which indicates where one stands in the anemia arena; lowest R. Range number is 12.0, 10 is anemia, 8 and under is blood transfusion time) and the platelet count. My readings yesterday were pathetic, the lowest so far. Most notable were the WBC at 1.0 and the neutrophils at 0.1. These readings indicate that I am virtually without immunities from germs and such both without and within. So far, so good, however, because I have not had infections; my hand washing habits have improved dramatically, and I take the bodily inventory each day to assure myself that some awful bacteria hasn’t decided to do a take over while there are no guards at the door. 
This was my last day of the second round of chemotherapy. All those injection spots are sore and the body is under siege, but not quite as badly as the first round. My psyche is peaceful again – I consider the psalmists and their very colorful descriptions of waiting for deliverance and how their final words are always filled with praise and trust. So it is – hope returns and with it a perspective that can see clearly that my own situation is not nearly as bad as it surely must be for many others. 
After the first set of more positive readings of white blood cells, while I was still staying in Lincoln, daughter Heidi and granddaughter Zoie appeared at our friend’s door carrying a bouquet of white tulips. . .”for the cells, may they grow and grow!” they announced gaily, and the tulips were placed in a wonderful art glass vase where their display brought smiles each time one came into the room. It is a good thing that spring is advancing with the incredible optimism evident in the shoots pushing through the hard dry earth that frequently defines Nebraska. “We are coming. . . ” they say, and their bright green color speaks once again of new life returning.