Writings of Constance Ore ( 1937 – 2010 )

The nurse responded to the extremely low white blood count with some urgency – resume Neupogin shots today, she said, and continue across the weekend.  Since these shots must be administered in places that do not contain muscle, another nurse advised that this is not a good time in life to be “buff”.  For the very first time, I have a gratitude for those upper arm undersides that flop about a bit because they are ideal places to accept these medicines.

One of the aspects of my present life is the unreality of total vulnurability to infections, which in turn, I am told, can be extremely serious threats to my well-being. Every surface, every sneeze, every child is potentially a bearer of unseen germs filled with enmity toward this present body, and I must be armed with great caution and disinfectants. No, no! to church, store, library, theatre, almost any place where two or three are gathered together.  “How long?” I ask, “A while. . .until your blood is better” I am told.         

Winter came back to Nebraska today, with snow and cold and gray skies.  Charles is on a short tour in Michigan presenting his music with a college choir and brass choir.  He reports that the spaces and organs are marvelous, and a bit of me sits there in a pew saying “Bravo!” in response to his work which is unfailingly wonderful.  Meanwhile I am in Lincoln in the home of friends being cosseted outrageously. 

This morning was another blood draw. This is the weekly event which permits a glimpse at the internal workings of the bone marrow. Last week showed drops in all sorts of places, and this week, the blood draw seemed to be a bit more optimistic. There were more small gains than losses, however, the white blood cells dropped even more, and a call to the health nurse in the oncologist’s office is intended to inquire about the significance of that.

The blood draws began in earnest when I first entered the hospital in early January. At the beginning of the testing, blood was taken every hour, first from one arm, at the inside of the elbow where a large vein appears, and then from the other. The persons who came with their kits on their arms arrived through the night; they would tie a stretchy band around the arm above the elbow, and sometimes they would ask for a fist, sometimes not. They would always check the identification band to make sure they had the right person and the right tests aligned. I did not watch the needle enter the body, but rather instructed all molecules to be at rest. “Stick” or “Poke” they would say, and then the needle would enter. Now of course, as a complete novice to such things, I do wonder how they can be sure that the needle doesn’t go right on through the wall of the vein to find who knows what, but always, these technicians found their mark. One young woman with red hair, a wispy voice and very fair skin came most often in the nights, and each time she proceeded very slowly and carefully. Her touch was remarkably gentle, and her needle entry was the kindest of all.

Another said cheerfully, ” I know you are looking at all these vials and thinking that we are draining you dry, but really, this is less than two tablespoons.” It gave me something to consider at those hours between three and four AM – people working through the night at the hospital gathering information, analyzing it, and in the process, helping to determine my future.

On this day the weather is making a statement of great contrasts; one moment there is a snow storm, and shortly thereafter, the sun will be shining and the clouds will be moving southward in great dark and light shapes. Birds seem to be a bit puzzled by the whole – sitting quietly in the plum and willow branches when the snow is whipping about and flying forth when the sun comes.

When one lives an ordinary life filled with ordinary things and events, even as years pass, and age groupings change, the landscape within remains constant. I don’t think the term “cancer” held any sort of meaning to me since my parents and sibings were never afflicted with the disease. This fall a dear friend died of leukemia, and I spent some time visiting with his widow thinking about what it might be like to have the best loved life’s partner die. It never occurred to me that within days I would be someone who would be the recipient of the phrase, “She has cancer”, with my husband in the position of health and continuity. It feels as though I have shifted over one pace into a universe which has existed all along – one which is filled with a huge population of people of all ages.

At the first session of chemotherapy, I was led into the “chemo” room. There it was, larger than our home’s living room and kitchen. . . filled with light blue recliners lining the outside walls. Next to those a small table, and on the other side, the IV stand. There were other chairs down the center of the room for those who might be waiting, and magazines and papers were all about. A refrigerator filled with snacks and drinks for the people who spend time in the room is at one end, and there are the curtains on tracks around a number of the blue recliners in case privacy is required.

The people in the room were in various stages of receiving the chemotherapy. Many of them came in smiling, joking perhaps, and as they settled in, newspaper in hand, the top buttons of their shirts or blouses were opened, and the IV needle was inserted into a “port” which is a small opening implanted into the upper chest of a person which in turn permits repeated entry into the body without exhausting the blood veins.

I was struck by the everyday-ness of it all. How many of us there are! As I mentioned before, the Vidaza is injected right under the skin, so that is a different experience.

Now the once familiar physical self seems far distant as each day a new nuance emerges. “Oh, so this is what I can do now”. Different thoughts entirely occupy the mental self; for the first time, this life appears to have a conclusion, an apparent earthly ending not unlike picking up a book and noting that the bookmark is near the last chapter. It takes getting used to. Naturally, one hopes each day for a very long epilogue, or perhaps even another book in the series.

Yesterday I received my blood test that gave the “stats” on how it all is going, and they were disappointing. I lost ground all over the place, and when I called the nurse about it, asking if perhaps this had been caused by the chemotherapy, she said very gently, “I’m sorry. . . I am afraid it is the disease.” This was tough, because she also said now you must be so very careful about infections, etc., etc. And the next day the dear ones were coming in from all over.

What a splendid event it was! This was the kind of day that will become landmark in our family history; it will likely move onward at least as large as Valentine’s Day and might even leap past Mother’s Day and Father’s Day. Since the family pictures taken on New Year’s Day didn’t turn out due to a malfunction of the camera and the film, the children determined to gather for a photo session on this Saturday. We got the photographer lined up, and the children gathered, even if it meant that Janna and Todd drove well into the night after leaving Chicago Friday afternoon, and John-paul ended up flying about via Cincinnati from Seattle in order to find a reasonably priced fare.

On Saturday morning, Janna and John-paul came out and as they came up the stairs, they both said, “Mom! You look so much better that we thought you would!” (You see, they have had to deal with this from a distance, and I suspect it has not been easy) We had lovely visiting, and John-paul made us a fine lunch. Heidi in the meanwhile was preparing a feast for us for supper, and would come out just before four with Todd and the twins following. Four o clock was when the photographer was coming.

We picked the photographer because he had taken Charles’ picture for First Plymouth, and it was really good. We didn’t know at the time that he specialized in photographing children, and was that ever a good deal with the three five year olds! We sent him a picture of the living room, and he and Charles agreed that we had to get rid of the sun beams that come in at that time of the day, so Charles covered all those huge windows with the New York Times. It looked very strange! The man was delightful, and as I said, absolutely splendid with the little girls; the twins had just awakened from their naps, and he charmed them into smiles and such within seconds. All four of the girls were fascinated by his magic quarter, and you could see that he knew exactly when to capture them laughing and smiling – of course, the rest of us were also at our best.

After pictures, we had the supper. Heidi made Swedish meat loaf, a meal that I have been making for years as a special one; hers was grand. At the sight of the highly successful foods, Heidi, Janna and John-paul, all of whom were working in the kitchen, proceeded to do a “kitchen dance” in delight. It was unforgettable, of course!

When I was at the hospital, during one particularly trying test in which I was getting a nuclear scan of my abdomen and was lying in the CT Scanner tube on my back, I was told I had to lie very still for 1 1/2 hours. Late the night before I had had the bone marrow aspiration on the hip, and the pain just kept getting more intense; when I asked the nurse for a bit more padding perhaps, she said, “Sorry dear, just lie still” and went on her way. So. In order to survive the experience, I went home to Iowa in my brain. . . and I commenced to make donuts there in that kitchen of my memories. I measured out everything, did the whole thing, and concluded it by shaking the hot donuts in the paper sack of sugar. Afterwards, I told Heidi about this, and she remembered my making donuts for all of us when they were growing up, but we agreed that we hadn’t had such a thing for years. When she told her husband Jon, he said, “What? You can make donuts at home? We have been married for almost twenty years, and you have NEVER made them for me?” (He loves sweet things above all else) Heidi told him that she didn’t wan’t to give him ALL the advantages. . .. he should just keep hanging around. . . She brought cookbooks to the hospital and we found the ideal donut recipe and Heidi declared that when I was home and when we were together, we would have the donuts.

On Saturday, she brought the risen dough which we cut out, and after supper, we fried them, shook them in sugar, and found them to be fabulous. More kitchen dancing. A large platter was brought forth, and the day ended with everyone eating donuts until they were gone.
The children left, and on Sunday morning, Janna and family and John-paul returned to their homes. Both Charles and I have said it was a day that had so many “unreal” qualities to it, it truly will be a singular experience in our memories. One of the very good things that happened was that all the children visited with Charles about how he is doing with this, and what they can do to help both of us. . . I do reflect that if this situation were turned around and if it were Charles that had cancer, I would be absolutely frantic inside. He is very calm and cheerful and hopeful always.