Writings of Constance Ore ( 1937 – 2010 )

My first correspondence with Sheila began at the end of August, 2007, when she wrote to me because she had run across this blog as she searched the Internet for information about her diagnosis of MDS:RAEB-2 (Myelodysplastic Syndrome – Refractory Anemia with Excessive Blasts II (11-19% blasts)). It was identical to mine, and like my family, all that she could find about it was very discouraging, so when she read about my life since becoming ill, she found the narrative to be the most hopeful of any she had seen. We began to E-mail one another, comparing side effects of Chemotherapy, and finding ourselves in parallel lives. But then, we began to diverge. Her platelets became non-existent, and the Vidaza did nothing for her except to seemingly increase her blood difficulties. Sheila began transfusions of platelets and in her E-mails she spoke of enjoying greatly those times after getting blood when she had more energy and could do some housework, or get her hair done, or even shop occasionally.

Meanwhile, after the 14th round of Vidaza, it was not working for me anymore, and the repeated injections of Neupogin did nothing to bring my white blood count back up as they had in the past. We determined to stop all therapy at that point. It was early November, and we visited with the oncologist about what might lie ahead. We asked him to be honest, and he painted a grim picture of blood counts going down to where only blood transfusions would sustain me, with the time between blood transfusions getting ever shorter until they no longer did anything, and then death would follow. The time frame of this was unknown. Both Sheila and I continued on into the New Year, with my blood holding – always low but not critical, and without any therapy at all. Nothing seemed to work for Sheila, and by February, she reported that she needed bags of red blood as well as platelets in order to function. By then, she had endured a great deal of misery, and determined to forego any more chemotherapy because everything left her worse off than before. I watched her life flow away as she followed the script which my oncologist had given for me as a likely future outcome. Sheila turned 63 in the first week of June; she’d been in the hospital for two weeks and her doctors sent her home after giving her a final two bags of red blood and a bag of platelets. At the end of that week, I received an E-mail from her that concluded, “Hospice is just pulling into the driveway so I will email again soon. Thinking of you, Sheila”. Those were the last words I heard from her – she died on June 10th and I miss her very much.

Sheila E. Osborne (1945 – 2008)

This afternoon I met with the oncologist and we visited about past, present and future; the news was good! He said that when he looked at my blood numbers in November, after the Vidaza was no longer effective, the trajectory was going downward and he based his not so promising comments on that evidence. But since that time, the blood has stabilized and continues to hold. We don’t know how long this will go on, nor does he. He said that I always try to get him to make statements about the future when he really has no clue – so we rejoice in the blessings of the present day, and in the promise of days to come. Always, life returns me to God’s embrace; and from there I can go forward in peace and joyful optimism and the prayer continues. . .”Give us faith to go out with good courage, not knowing where we go, but only that your hand is leading us and your love supporting us; through Jesus Christ our Lord. Amen

Returning home from our wonderful time with the Nugent family, we drove across the southern edge of Wisconsin past beautiful dairy farms and over rivers that almost touched the bridges that spanned them. We were headed toward Prairie du Chien but flooded roads meant that we had to cross the Mississippi at Dubuque, Iowa, where the waters were high but not overflowing. From there, we drove northward on the Iowa side of the river on a high ridge overlooking the valley. It was a perfectly beautiful afternoon, and we closed the day crossing back over to Wisconsin at Prairie du Chien where we spent the night. We ended up in a suite which was designed for honeymooners. This meant that a large mirror was affixed over the bed – a feature which I had never experienced before. I lay down fully-clothed and looking up, folded my hands upon my bosom and suggested to Charles that he do the same because this is how we might look in a coffin. He complied and we both gazed straight up for a bit. . . then Charles said, “Well, our plan for cremation is obviously the correct choice.” It probably was just as well that the mirror get a glimpse of life from a different perspective for a change. After supper, we drove up to the Wisconsin State Park from which the entire valley with its confluences of great rivers can be viewed. It was a grand sight though water was everywhere.

The next morning we walked up into the Effigy Mounds National Monument which is on the Iowa side of the Mississippi River, high on the bluffs and bearing the spirits of many of the people who lived in that part of the world even before it was named “America”. There is a sense of mysticism that cannot be explained. . . the trees are very tall, and the wind blowing through them makes a constant commentary. The points of interest toward which the trails led were at places where one could look out over the rivers and see bald eagles flying about. We continued our drive through Decorah where we had lunch, ice cream and a good visit with friends who have chosen to retire in this picaresque town.

Our last stop before heading home was in Spillville, Iowa, where Antonin Dvorak spent a summer doing final corrections on his “New World Symphony” before it was given its first hearing in New York City the following winter. It is said that he did receive inspiration for “Humoresque” while fishing along the Turkey River which borders the town. The museum honoring his three month stay was on the second floor of a building that displayed a gathering of clocks hand carved by two brothers throughout their lifetime. The ladies of the town who were in charge of the venue greeted us briskly, took our money and told us that we were to wait “right here” until a tour of the clocks would be given. After that, we could ascend the stairs to visit the Dvorak part of the story. We were led past huge clocks with elaborate moving displays from the Twelve Apostles through a depiction of the Little Brown Church at Nashua to the clock termed their masterpiece, The American Pioneer History Clock. All were carved in great detail and also were described to us in great detail by the lady with the memorized spiel. When we finally got to the Dvorak museum, we found a somewhat paltry gathering of letters, musical scores and photographs of the composer. A sound track playing a continuous rendition of the “New World Symphony” finished off the setting.

Home again at Sanctuary after driving across a very sodden Iowa, we found our own acres well-watered and overgrown. When we fetched him from Mike’s kennels, Alphie was overjoyed to see us again, and as he reacquaints himself with his own domain, he almost disappears in the fields. Creatures are abundant too, from the dragonflies and frogs to a great old snapping turtle which appears to be checking out other places than the pond. It is so very good to be home again! I continue to fare well, and this is a delight beyond measure, with much to be thankful for and much to anticipate in the coming days.

Sunday we left Nebraska for a week long adventure centered on a visit with daughter Janna and family at their home in Lake Bluff, IL. Rains have been inundating all of the Midwest so in addition to our own rushing streams, we saw overflowing rivers and flooded fields all across Iowa and Illinois. After crossing Iowa on I-80, we drove north on the Great River Road for a short distance from Davenport to Clinton, IA. where we spent the night. In that town, ADM has a huge corn sweetener plant that presents the startling sight of a large golden dome with great tubes connecting it to various towers nearby. The Mississippi River is very wide here, flowing around a number of tree covered islands apparently flooded with the muddy water coming into the river from every side.

In the evening, we walked along the west bank of the river and watched a tug boat maneuver its huge cargo through an opening in the railroad bridge downstream. A van stopped near us and a little round woman hopped out to greet us cheerfully, announcing that she was a resident of Beaver Island which was just “over there”, pointing to a spot on the other side of the bridges spanning the waters. She said that her husband used to be a tug boat captain and she had gone down the river many times on just such a craft as we were observing; the food was incredible, hence her rotund appearance. Her husband, the former boat captain, sat immobile in the front seat of the van so we surmised that perhaps he’d had a stroke or some other illness that rendered him inanimate. As we observed the tug pushing its block-long grain barges along and threading them through the small opening, we marveled at the skills of the operator.

The little woman launched into her stories; “The cook put out three meals a day like you wouldn’t believe. . . Thanksgiving every night, if you know what I mean. . . and the cook on the tug had just two requirements. . . she had to be old and she had to be ugly. . . there were ten men on that boat, you know, and well, you know how that could be. . .” And so forth. Her speech was in the well rounded cadences of stories polished from much repetition. Perhaps she was lonely and needed respite from the silent man in the car. We finally broke into her non-stop conversation, thanked her for her information and walked away pleased to have had our day conclude with a personification of that time and place.

This day in Lake Bluff is beautiful with clear blue skies and a breeze that is lifting the blossoms of the Kentucky coffee tree outside the north window out and away. We are postulating activities for the day and week before us while sitting about enjoying unstructured time. As is frequently the case, my head and my body are not quite in agreement about how to go forward; not surprisingly, the body always wins!

Extravagant blossoms of peonies grace our tables now, with the scents of lilac and honeysuckle still permeating Sanctuary. The rains have carried us into our jungle phase, so mists hang over the pasture and every growing things is filled with grandiose plans. It is the deceptive nature of Nebraska weather that dusty, dry and hot days begin to appear around the beginning of July and continue onward through August so only the hardiest of the plants survive to carry on another season. Living in the present is pure pleasure in these early days of June, and we respond accordingly.

The miracles of life go on. . . kids are out of school, friends and neighbors are traveling in different directions and the cadences of early summer days are quite lovely. I have come through several weeks of feeling “lesser”. (Hilda, my mother-in-law, had a phrase that covered it nicely; to describe not feeling well, she would reply to the query of “How are you?” with the words, “Not too whippy”. I have found that this says it well.) Yet, the blessing is that the blood counts still indicate time for more living, cooking, laughter, and grandchild monitoring. John-paul has returned from Egypt, having traveled thousands of miles and bringing many photos and stories back to share with us.

I looked back at the June 2nd entries to the Blog from 2006 and 2007 to see the progression of this new life, and Alphie was featured along with reports of health struggles that had not yet become routine. Now Alphie has become the dog I only dreamed of in 2006, when I described him with these words: “I can almost see the day when Alphie will respond calmly and with great dignity to young and old alike.” He lies at my feet and sleeps through the eloquent speech being given by Barach Obama as he accepts the nomination from the Democratic party. I don’t think I expected to see this month of June as I wrote the entries of the past two years, and I am profoundly thankful to God to be here in this place wrapped round with love and blessings heaped up and running over.