My New Life January, 2006
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