May 13, 2006
Away with the twice daily self applied injections of blood thinner! Hallelujah! (Four Coumadin pills after supper instead) Away with the extra injection of Aranesp! Hallelujah! (Latest blood draw had my Hematocrit reading above 40) Amen and Praise the Lord! Hallelujah!
Yesterday was the bone marrow aspiration day, and we were in the oncologist’s office by nine AM. I prepared for the event by ingesting two Oxycodone tablets, so by the time I arrived, a mellowness was settling around the edges. In addition, I was given Ativan under the tongue and a Demerol injection in my left hip. All of the above meant that the bone marrow aspiration was barely noticeable except for thumps against the hip and a twinge or two that went down the leg. I had to be wheel-chaired out to the car, and the rest of the day passed in a stupor. This AM I am back on the planet with small wisps of unclear thinking. (I see nerve synapses reaching out and not quite making the connection and subsiding with an “ah well, better try again later”). Now we wait a week for the readings taken on the bone marrow, and at that time we will find out the status of the disease. Such questions as “Did the chemotherapy actually assist the white blood cells to mature?” and “Are there more blasts than ever?” will be answered. We have been looking forward to these answers for quite some days, since it makes a landmark statement regarding the future.
A story about drugs: Last week, I ran out of the anti-nausea pill Zofran, which if you recall, costs almost $40.00 a pop. We had been getting 12 pills at a time from the local pharmacy for a payment of $40.00, but this time, since it was the sixth pharmacy renewal, Charles was told that after five refills, the secondary insurance no longer covered, so the cost would be $212.00, or half, for the twelve tabs. Neither ourselves nor the pharmacist knew about the cut-off time prior to this date. It was suggested that in order to receive a better deal on the Zofran, we immediately get our doctor to fax the order to ExpressScripts, our company that provides the long term drugs via the mails. We did this, of course, and yesterday I received the information that 180 pills of Zofran would be arriving in the next few days. (Probably should be by armored car rather than by UPS) The cost to us would be 45.00. A tiny bit of math says that we save $3523.00 while dealing with exactly the same drug. There surely are murky waters in which all this money flows; one can but hope that it is purchasing someone something useful and fine.
Today I made the appeal to be moved over to the oral blood thinner, Coumadin, because the twice daily injections of Lovenox have left the landscape of my abdomen looking like I fell face forward on a porcupine. Each entrance spot has left a bruise and the whole experience has begun to loose its charm, had there been any present in the first place. The process continues by my continuing the Lovenox injections for three days while slowly adding the Coumadin, one milligram a day until reaching four milligrams. The oncologist’s office checked “all available sources” to see if there was an adverse reaction to Vidaza (my chemotherapy) and none was found. “Of course,” said the nurse, “it’s kind of unusual to have to use blood thinner at the same time.” Exclamation points exploding in the brain on that one, but I suspect that I am “living on the edge” in a number of places in this present life. When I worriedly pointed out that I am getting bruises easily already, she said, “I wouldn’t be surprised.” My blood will be checked frequently starting on Mother’s Day, which is when the Coumadin will be well in place; the dosage will be adjusted as needed because the drug has a narrow therapeutic index, meaning a small margin between too little and too much. 
Fortunately, to provide a fine distraction, our spring season is the most beautiful ever; rains have come to refresh, the honeysuckle and lily of the valley by the east porch scent the air nearby and the lilacs on the edge of the forest do the same up on the hill. We have had a large group of sea gulls flying over, suddenly making this landlocked place sound like the seaside for a few moments. They have come over several times this week, calling out loudly as they pass. Perhaps they are lost like the Israelites in the desert, and hope soon to find an inland sea. 
One of the places the low white blood cell count leads is into the area of being challenged with lesser immunities than the rest of the human race. At first, when I started into the condition, we listened to the dire warnings about staying away from sick people, especially children, public places, and so forth. Then counts would go up, counts would go down, and life would go on. Thoroughly intimidated by the news about germs and their possible evil intent toward a body such as mine, I didn’t go shopping, to church, to public areas, and I carefully screened the grandchildren before they could hug me. As the realization came that my life from now on would be lived in this territory, we began to relax the parameters and go forth more. Life almost approaches normal in this respect, except for a new dimension. 
On Thursday, I went to have a requested bone density test at the local hospital. A large van with the scanning equipment inside comes and parks in the emergency entrance parking lot. You check in, and the woman who does the scanning comes and gets you. Once inside the low ceilinged area, you are asked to lie fully clothed, including shoes, on the table and the technician proceeds to set the scanner off on its tour of your body. I went, neglecting to mention anything about immunities, had actually forgotten about them on the lovely morning. I dutifully lay down on table and the scanner began when the technician sneezed twice, full bodied wet sneezes just inches from me. Instantly, my brain brought forth the old saw, “Your goose is cooked!” and I asked in what I sent forth in a neutral tone but which left my mouth strangled and hostile, “Do you have a cold?” I saw the molecules, trapped in the small space landing everywhere even as the machine chugged along over my being, and I despaired of holding my breath. She replied in that stuffy voice indicative of much mucus, “No, it’s just allergies.” “Hah” said the inner voice, “that is absolutely what they all say.” She blew her nose vigorously and sneezed again. The instant the scan was completed, I fled the space, even pushing a bit of Purell up my nose but knowing it was too late.
Yesterday was the blood draw day, and without consciously thinking about it, I had made the leap toward an expectation of higher readings. The white blood count sank back to 1.5, less than half of what it had been the week before. It was almost a physical blow to have the nurse tell me that number and when I shared the news with Charles I could see from the first expression on his face that he too was taken aback. Hope is a bit tricky. You absolutely must have it in order to carry on, but you cannot let it lead you to places beyond where you might go because if you do, the disappointment can flatten you. We talked again. “We can’t keep doing this” said Charles, “we have to learn to live life each day, and not go up and down all the time. . . nothing has changed except the information, otherwise the day is just as nice, and you feel just the same as you did before you knew the count had gone down.” The rational mind comes forward and pushes the wildly flailing emotions back into a secondary spot, and one begins again. 
The morning breaks with very loud cardinal songs coming in through the bedroom window, and the silent inventory of body parts with “Thank you, Lord’s” for the wellness found, and “Help me today, Lord” for the rest. I always conclude with my version of the last part of Luther’s Morning Prayer, “For into your hands I give myself, body and soul and all things; let your holy angel be with me that the wicked foe may have no power over me, Amen”. The robins and rose breasted grosbeak have now added their songs to the cardinals and the day begins.