Writings of Constance Ore ( 1937 – 2010 )

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.

Today I am almost finished with the ten injections of Neupogin, a drug intended for the building up of white blood cells. Each week, blood has been drawn to see what the numbers are, and if the hematocrits reading (having to do with the red blood cells) is less than the number 40, an injection of Arinesp is given. This is yet another drug meant to help build up the red blood cells. Low red blood cells means anemia, and that in turn means that there isn’t enough oxygen moving about, making the heart work harder and great tiredness a part of each day. The blood indicated that the numbers are dropping rather than gaining, or even holding their own. Somehow, I had concluded, wrongly, of course, that the first round of chemotherapy and the injections that followed would mean that surely, improvement would be evident. When I heard the number, I started to cry, and I didn’t want the nurse to see this, so I turned my back to her as I put on my coat. A hand filled with tissues reached over my shoulder, and this was followed by a hug. “Hope and pray, hope and pray” she said.

Last December, on the 16th in the afternoon I felt a darkness come in. I was addressing Christmas cards, and stuffing the letter I’d written into them, and suddenly, it all seemed very trite and dreary. In the evening, Charles and I went to the Concordia University Christmas Dinner; we visited with lots of people, and we ate at a table that held other folk with whom we had not visited with before. I thought that all of the food, though given glowing descriptions that were posted on the buffet, did not taste good to me. That night I started to have stomach cramps, and the next day it proceeded into diarrhea and fever. “How disgusting! I had the flu shots and everything!” I complained to Charles.

Our dear son John-paul was due to arrive on Friday, December 23, and I had grand plans for lovely foods for us throughout the holiday season. I was unable to make anything at all because food made me ill. Many cookies, breads, and other good things to eat did not materialize this time. By December 20, I went to the Clinic for some help to get rid of my illness. The young woman Doctor Ripley had my blood drawn, and called the same day saying that I should get a bone marrow aspiration because it looked like I might have leukemia! It was too much. I said that we had no cancer in the family. . . this was just too great a leap. And furthermore, bone marrow aspirations are not any fun at all, or so I believed.

We continued into the Christmas weekend. John-paul flew in and from the moment he arrived until the day he left again, he provided us with food, good cheer, and unflagging assistance. I did not get better. Each day, it seemed as though I got worse. I sat down and cried and told Charles that I didn’t want to be sick anymore. How could I know that I was embarking on the rest of my life?
Christmas Eve day found me with tremors and spiking fevers. John-paul stayed at home with me in the evening and wrapped me in large down blankets and gave me Tylonal to break the fever. Charles was playing for three services at Plymouth Congregational Church in Lincoln, calling in and checking with us. Christmas Day I didn’t go to church, but John-paul did so he could hear Charles play his wonderful music. In the afternoon we went to Steve and Linda Esterling Wake’s house for a wonderful Christmas dinner there. It was delightful, though I once again began to shake and have fevers.

On December 26, we began the journey toward finding out just what was the problem with my health. Each day I became less; more tired, less able to project a personality, just less. We started in with Dr. Van Vahle. In the week following Christmas I had a Cat Scan of the abdomen and I had two IV’s of liquid which helped the stomach cramps. We all tried to avoid the worst scenario, that is, cancer of the blood. Some strange infection, we said. . . but the illness continued.

Across the New Year’s Day weekend, daughter Janna and husband Todd and their five year old twin daughters came, and we had our family photo taken on New Year’s day in the afternoon. Eldest daughter Heidi’s good friend Andrea took the pictures, and there was much fun and laughter with that event. Todd stood on some books so that he wasn’t a great deal shorter than John-paul who is our very tallest family member. We went out to eat afterwards at the Cornhusker Hotel in Lincoln. The next morning, January 2, we all had a breakfast together at Heidi’s house, and Janna and Todd returned to Chicago later on that day. Wednesday, January 4, John-paul returned to Seattle.

On Friday evening, January 6, I entered Brian East hospital with the intent of finding out what was wrong. I was put into a room where on the other side of the curtain, a woman and her daughter were watching wrestling on the TV which was turned up pretty loud. Dear Charles was stricken. . . “We can go home again” he said. But we didn’t. Three different areas were explored, the digestive system, the infectious deseases, and lastly, the hemotology/oncology, or the blood and bone part of the body. Right after I arrived in the evening, the blood draws began; one an hour, with lots of vials of blood. At ten at night, the oncologist came and did the first bone marrow aspiration, right there in the room. Ex rays were taken of the chest. The next day, gall bladder ultra sound, gall bladder nuclear test, another Cat Scan. Finally all of the drinking of stuff to be inside of me started up diarrhea and feeling ill again. I had IV’s running all the time. I was moved to another room because by now it was established that my white blood cell count was very low, and I didn’t have many immunities. The nurses were all very nice and kind, and the blood draws continued. Also, I had so many holes in the veins there was increasing difficulty in getting the needles in.

On Tuesday evening, January 10th, Dr. Hutchins came in to visit with Charles and myself. He had determined that all testing was normal except for the blood. The blood was showing abnormalities, and another bone marrow aspiration would be needed to help the doctors reach the correct diagnosis. Meanwhile, go home! Get out of the hospital because there was much illness around there. So home we went. The next day, John-paul’s 32nd birthday, we went in to the office for the bone aspiration. I asked for morphine, and during the draw, which was difficult and painful, Heidi sat and held my hands and visited with me about beaches that we had been upon across the world. Heidi has been a wonderful person in this whole thing. I began to throw up from the morphine on the way home, and this continued well into the evening. I didn’t regret having the morphine, but it was not without cost. After this, there was a long wait. . . I did not get better, though now I no longer had the fevers and the chills. Great weariness and low immunities were a part of these days. The diagnosis came in. Here it is in a statement I developed for Charles to send about to the various communities of people who are concerned.

Psalm 90:12 “Teach us to number our days aright, that we may gain a heart of wisdom”.
On Friday, January 20, we were told the diagnosis of the illness which came to live inside my body. It is entitled RAEB-T (refractory anemia with excess blasts in transformation), and it is one of the subtypes of MDS (Myelodysplastic Syndrome). This is an uncommon illness that can be present in one’s body for a long time, right under the radar, with blood counts that are low, but not low enough to cause alarm. Then after a person reaches the age of sixty five, it can make its move, and begin to move toward acute leukemia. According to the literature, about 15% of MDS patients have this type, and there appears to be only one therapy available to address it. This is a drug called VIDAZA which may be able to help the bone marrow make healthy blood cells again. The drug has been available for about a year, and the studies available indicate that it is helpful for 40 out of100 with varying levels of success. While there is no known cure for this illness, life can be extended for a number of years if the body is a receiver. This in turn is based upon the number of stem cells remaining in the bone marrow, and that is an unknown.

VIDAZA is a powder that has to be mixed up with a liquid in preparation to be injected right under the skin, not into muscle or blood. The dosage cycle is once a day for seven days, rest for 21 days, then another cycle. I have had five doses. They are administered with two or three injections, and to date, the only reactions that I have had are great red and blue bruises around each of the injection sites. (thighs, abdomen, and upper arms) and a weariness beyond description. (It’s the kind of tired where you say to yourself, “Well, I’ll just go into the kitchen now, and do something,” and you find that you can’t walk past a chair without sitting down in it instead.) The dreaded nausea, hair falling out, swelling shut of throat, etc., have not occurred. After the seven doses of VIDAZA, then one receives ten injections once daily for ten days. This is a drug that is intended to encourage the body to build white blood cells. Also,there is a once weekly injection of a drug to encourage the growth of red blood cells. The doctor tells us that we will know by March if this is working. He had a person who had had almost identical symptoms who’d just completed six months of the treatment call us to tell us that his blood counts were very nearly back to normal. In the course of the conversation, the wife asked, “Do you have a community of faith?” And I said yes, a large and wonderful one, and she said, “So do we, and we feel it is the prayers that have made the difference”.

Charles and I thank you for your prayers, and your caring and your concern – you have called and sent flowers and cards and you have wrapped us round with such cherishing! We remain optimistic and hopeful for good outcomes, always remembering that we are in God’s love and care. Connie

Today we drove in to Lincoln to the doctor’s office where we would hear the entire diagnosis and treatment plan. When we walked into the waiting room, it was filled with people, most of whom were very white and slumped in various postures of weariness. Some of the women had on caps, and others didn’t have hair. I checked in and thought about how I now joined a new community of people. After another blood draw, the doctor visited with us for almost an hour. Here we heard the words “cancer” and “chemotherapy” and knew they applied to the present condition.