Writings of Constance Ore ( 1937 – 2010 )

Yesterday evening’s light snow acted like a forensic dusting on the paths through the field and forest, so upon our dawn walk, every track made by the night creatures was evident. Mice, squirrels, rabbits, cats, raccoons, deer, and pheasants all left their mark, and Alphie had a lovely time establishing the details of their activities. We have a trio of deer that come and eat corn and bird seeds – they seem small and delicate, and one has injured a front leg. Charles first noticed it the last week of January, and we are amazed that it has continued to survive in spite of an obvious difficulty with walking and running.

This last week has had a certain aspect of a “snow day” as life moves on. . . that is how the “time out” diagnosis of the MDS progression feels. A recent article in the New York Times (The Power of Words for Cancer) tells about the helpfulness of writing about the illness, and so it is for me, too. I think it is knowing about a widespread web of caring people who will rejoice with me on the better days and who encourage and support me through the harder times. There is much that is a mystery about how this actually takes place, but faith is rooted in the realms of the unknown and God’s ways are far beyond my understanding. I am in correspondence with someone who received a nearly identical diagnosis of MDS just last fall, and her journey through the days since then has been one of immense difficulties with non-existent platelets and failing white and red blood cells. Her courage is phenomenal as she and her family and the medical community struggle to find a way toward life through apparently insurmountable odds. Each day I offer prayers and send well wishes for her, and I hope that she will see spring come again even as I look forward to the new life that will soon break forth all over Sanctuary.

The intense cold remains with us in spite of the sun shining for more minutes each day. My preparation for the morning’s walk has been the same for many weeks now. I begin with woolen leotards, heavy cord trousers, turtleneck, woolen sweater, fleece jacket and woolen coat with a fleece neck warmer pulled up over my nose, and a black stocking cap on top of that. I pull on mittens lined in fur, and finish off with an extra pair of socks inside fleece lined hunting boots. When I am finished I look like an large popsicle with moving feet. Alphie sits patiently and watches the entire assemblage; he doesn’t seem to mind stepping out without any extra coverage. Off we go for the walk through pasture and forest – there is always something for him to chase – sometimes rabbits, sometimes deer. We finish up with a trip to the mailbox for the morning paper. Charles will have prepared breakfast in the meantime and our day begins in front of the windows eating and watching the bird community. Today it was pretty quiet because the sharp-shinned hawk selected the arbor with bird feeding tubes hanging from it to sit and wait for its breakfast.

This morning we met with the oncologist, and he came in beaming to announce that it appears that I am in a “time out” from the illness. He said while it couldn’t be called “remission”, my blood readings are holding and even improving a bit, and he has absolutely no idea why this should be; he said if he could claim credit for it, he would. In a discussion about “quality of life” vs “quantity of life”, he advised against getting caught up in following the numbers in the blood readings. As an example, he said that if the blasts passed the 20% mark and I went through a rigorous treatment cycle of chemotherapy to bring them back down to 18%, but my life would be one of misery in the meanwhile, he couldn’t see the point of it. So we left with the assignment to work with the gastroenterologist to determine as completely as possible what is causing the ongoing intestinal difficulties. Also, the blood counts will continue to be monitored every two weeks. When (if) the blood readings begin to drop, then I will have a bone marrow aspiration and a course of therapy will be determined at that time.

As we visited with the doctor this morning, we were struck by how blessed I am from his point of view. . . his genuine delight at a person not losing ground to the disease was very evident – and his admittance that he doesn’t know why was a reminder of how this strange illness attacking the stem cells keeps its causes well hidden. More than ever, I was reminded to cease grousing about a body that is not up to living life as it once could, but rather to give thanks that it is doing so well in spite of the battle within. When one is privileged to house a miracle, then the only response is heartfelt thanksgiving to God for permitting it to be so.

A Dutch proverb says, “As you dance, you may have to pay the piper” (or something near that) and when I danced off to Mexico, I had already considered the possibility of the piper waiting in the wings. I got sick two days after returning, and now, some ten days later, I am still struggling with intestinal upset. A part of me cries out in dismay at the high cost of brief adventure while another part of me encourages those feeble immunities to carry on and restore wellness. There is a great deal of flu in the community also, so it is quite possible that I would be in this population anyway.

Winter, once so white and glittery and decorative on tree and field, has completely lost its charm as single digit temperatures greet each new day. Alphie sits patiently and watches me put on layer after layer of clothing before leaving the house for the morning walk. The cardinals, undoubtedly responding to nature’s trigger of more sunlight, sit on treetops at dawn and sing out their territorial claims even if their sounds are frozen midway between beak and branch. Shortly after, they all return to the plum bushes near the feeders and spend the rest of the day consuming sunflower seeds. I counted twenty pair yesterday afternoon.

A week from today, I return to the oncologist’s office to review the progression of the MDS; considering the scenario of possible difficulties that was given as we departed in November without therapy of any kind, I feel it has been a long stretch of time in which the blessings were heaped up and running over. I have been reading again about the illness, hoping to find new information, however, the Vidaza remains the last big break through. According to what is currently written, the outer edge of life expectancy after a successful treatment with this chemotherapy is 2 1/2 years, and I arrive there in June of this year.

Soon Valentine’s Day will be celebrated, and I did go out to look at cards. Absolutely nothing called out to me as a looked for something for Charles. Even the thought of piling up stacks of chocolates in red satin boxes has not gotten much of a response – in the past, just the sight of a Godiva box could start the saliva, but this year, nothing. Perhaps I will paste a red construction paper heart on a doily and print on it “Be Mine” as a sentimental reenactment of my grade school efforts – I do think it would be nicer than the cards with the black and white images of much older well-wrinkled couples holding hands and beaming on the outside and words about enduring love or just enduring written in red on the inside. Ah well, when I am feeling better, I will set aside this “bah, humbug!” state of mind and we will have a festival of chocolate and a review of great love stories. A soft south wind will commence to blow, the snow will melt, spring will advance, and life will be good.

Home again, and more snows and cold temperatures established winter’s fierce continuation at Sanctuary. Only the sun is speaking of Spring’s nearing, because the warmth emanating from there has great authority and promise.

The dash to Mexico was a wonderful experience from start to finish. As we got into the taxi to return to the airport, the driver opened the trunk of the car and took out an old broomstick cut to size which he placed under the door to hold it open while he loaded our bags. “Mexican technology” he said with a smile, and we smiled, too. We were at the back side of the condo and we came to the cobblestone street through a tiled garden with a fountain in the middle. Bouganvelia hung from the balconies, and I felt as though we were in a Travel and Leisure magazine advertisement as we passed by. In the days before, we’d had our breakfast coffee on the balcony overlooking the bay, eaten splendid meals, walked on the packed sands right next to the ocean for our morning strolls, and gone on an adventure day trip so Linda could snorkel and both of us could whale watch and see dolphins and sea birds.

Our day trip started early Wednesday when we took a taxi down the hill to the Marina where two huge cruise ships were tethered; the smaller vessels came and went between them. The tour boat was a catamaran holding about 60 people, and after uploading all of us, we commenced on our journey. The destination was a small grouping of islands that was a protected bird sanctuary, and it would take almost two hours to get there. The unfortunate aspect of the trip was a preconceived notion of “fun” which the leader of the tour translated by playing endless music very loudly over speakers. He would stride to the front, grasping a hand mike, give a sweeping signal to another of the crew to shut off the music, and then he would commence. He started with “Good Morning!” (not unlike some preachers after the prelude and before the worship is to begin.) As usual, the first response was too feeble to placate, and on this morning and on this boat, he kept at it until people were screaming and whistling. Linda and I ended up hanging over the front of the boat, where the slap of the waves and the ocean spray protected us a bit from the on board activities. We saw at least a dozen hump-backed whales, both nearby and off to the sides. The most memorable sight was a row of dolphins leaping and diving through the ship’s wake. . . they were lined up side by side, and truly looked like a fantastic chorus line. So the day went – a mixed package of wonders to behold and a manic push for “FUN!” The beautiful sight of sea and creatures I will always remember, and the other I will forget soon and in the future, seek to avoid at all costs.

When I made the decision to make this trip, I understood the possibilities for illness while in Mexico, or from flying on the airplanes. Happily, I remained healthy throughout my stay in P.V., but upon returning to Nebraska, I began a nasty intestinal illness. The white blood count has dropped again, so it may take a bit of time for the body to gather its forces once more. The very early beginning to Lent this year (today is Ash Wednesday) will be the setting for stillness and introspection and hopeful healing. Here at Sanctuary, it will be a season that starts in true winter and concludes with the greening of the willows and grasses in the onset of lovely spring.