Writings of Constance Ore ( 1937 – 2010 )

In a place that is usually quite sedate, there is nothing quite so fine as the sound of nine year old girls’ voices and their light, quick footsteps as they move through the house. “Life” as adventure and classroom and discovery is displayed and all of us are having a fine time together. Alphie stays nearby because more petting and brushing are likely to occur, and he never misses such an opportunity for attention. It feels like true summer at last.

Appetite: definition – “An instinctive physical desire, especially one for food or drink. A strong wish or urge.” A lifetime lived, and it never crossed my mind that one could reach the point where appetite is gone and the need for sustenance becomes a chore rather than a fine part of living. Food has slowly evolved from tasting strange through no taste at all to a distaste for the act of eating – though the medications have helped to make some things edible, there is something that says, “I can’t do this” and it becomes impossible to eat. Imagine! My sense of smell is still quite functional, but I have read that as my disease progresses, metabolism decreases. I had a blood transfusion last Friday and its effectiveness was not as grand as was hoped. This also bears a message about the status of the cancer.

After years with AML, it appears to be growing more quickly now, intent on destruction, like the heavy vines that completely cover the wild roses and plums and take away their lives in a season’s time. The cancer cells are wrapping around immature blood cells and sending them into the bloodstream, useless and using up space. As they proliferate, less and less blood is available to sustain me. My appetite for life is also affected – there is less energy available and I can feel the color leaching out of my thoughts and behaviors. I told Charles that I hoped his memories would be taken from the times in our past when I brought more to everything, and he assured me that a great deal of that was “unforgettable”. (The fervor in his voice made me consider that not every memory will be adorned with rainbows while harmonious music sounds in the background.)

So we go on here at Sanctuary. . . living, growing, dying. It is much the same everywhere, but as we live out the days we define them by our own experiences. Otis Young’s best loved benediction calls out from its place of honor on the front of the refrigerator, “Go forth in peace – and in the strength that God supplies. Surrender your anxious cares to God and find your joy in serving others. The grace of God revealed in Jesus Christ and ministered to you by the Holy Spirit go with you.” Otis had the good fortune of a seemingly quick transition from earth to heaven, dying on a cold morning after flinging snow off his sidewalks, but his words remain to comfort those of us who continue the journey. C’est la vie.

Sometimes, my life’s path seems clear and tidy where everything is kept in balance – and those are good times. In the recent weeks, my way has gotten unclear and not at all tidy. I seem to be stumbling into dark passages where there are many rocks and pitfalls. Last week, I got caught up in a drug supply confusion that meant I was given a different medication which in turn caused a side trip into a very unpleasant place where I felt like I was swimming underwater, near the surface, but unable to break through to where I might think and breathe properly. I believe that at some point in the supply chain a wrong number, or perhaps a miss-typed word combined with the anticipation and celebration of the Memorial Day weekend contrived to make the good and useful meds unavailable for a time. Now all is in order again and I have returned to somewhat better days.

Since I have been losing energy, I have not been “out and about” very much. Last Friday however, Charles had a wedding rehearsal at First Church in the early evening, and the timing seemed perfect for me to go along and have a small shopping adventure in the meantime. I needed some new bras and one department store carries the brand I prefer, so this would work out very well.

I arrived at the lingerie department, and a formidably built young woman hurried to assist me. She wore a pin with “Lingerie Consultant” printed on it. I asked where to find the brand I sought, and as she led the way, I said that I had lost some weight, and therefore needed to find a different size. She turned to me and said very eagerly, “You lost weight?? Oh, that’s sooo wonderful! I’m trying to loose some weight, too. What diet are you on?” I didn’t reply immediately and she went on, “Oh c’mon, you can tell me. . .” so I said, “I have terminal cancer. It causes weight loss.” She beamed. “Ohhh, breast cancer!! Is it breast cancer??” I looked at my watch, thinking that if I could just last a few more minutes I would make my purchases and escape. I was already certain never to return. “No, not breast cancer” I said. More delighted beaming and “Ohhhh! You’re in remission! I think that’s SO great! Now, what size bra are you? I really know my way around cup sizes!” She suddenly turned to face me and said, “Do you know, I’ve had two breast reductions? TWO!” Now she was looking at me expectantly, and I realized that I was to say something. I had unwittingly stepped onto a stage where I was playing a part for which I had never rehearsed, and I was flummoxed. When one does not have proper energy, the world is a harder place to navigate, though this incredibly clueless woman would have been a challenge for anyone. Here was an amazingly ample bosom thrust in front of me, and I finally produced the words, “You do appear to be proportioned correctly.” In the few moments for her to conclude that she had not been insulted, I spotted what I needed, grabbed it and began to hurry to the check-out desk. She called after me, “Remission!! You’re so lucky, remission from breast cancer!”

I returned to the car and just sat there, exhausted. The next day I related the story to a gathering of women friends, and in the telling, realized that this held all the elements of a perfect comedy sketch. We could bond in our common experience of our culture’s obsession with diet and body shape, and the peculiar elements contained within the encounter had all of us laughing to the point of tears. Being female at this time in history means that the constant barrage of “imperfectly shaped bodies” invades every mind and few of us can stand in front of a mirror and see an entirely pleasing image there. Talking about the clueless and potentially ghastly take on cancer and considering the responses one might have given made it a moment of high humor, and the laughter and stories that were generated more than compensated for the actual event.

June days are abundant as every growing thing responds to rains and flings out new and bigger leaves, branches, and flowers. I think about “life”. Another day with a daybreak and a set number of hours ahead in which one will experience what one has determined should take place. So many things that had a meaning to me (i.e., food, thinking about it, cooking, baking, planning with great pleasure for events of sharing meals with friends, or travel, or shopping, or lunching out with a friend, or having the energy to garden, etc.) are no longer in place and therefore, what is “life” now? I sleep a lot and tomorrow I will likely pursue a blood transfusion in the hopes of having an energy boost before next week’s visit of grandchildren. I think one can consider another day of existence as a gift, as time to pass, or as a burden. As a child of God, wife to splendid Charles and mother/grand to a gathering of special people, and a companion to Alphie who is waiting for me in delighted anticipation of his walk around Sanctuary, I have to say “gift”. Once that determination is made, then the day will follow and there will be laughter and it will be all right.

In the King James’ translation, Psalm 118 opens and ends with “O give thanks unto the Lord, for he is good, for his mercy endureth for ever” and within the psalm is verse 24: “This is the day which the Lord hath made; we will rejoice and be glad in it.” So we shall, and I hope that the days are gifts of life for all of you, too.

Today I learned another lesson about life. When one calls the doctor and asks for ideas for treating something, if the reply includes the words, “We could try . . ” the best thing might be to do nothing at all. I got the recommended shot to attempt an intervention with extreme nausea (the strange views that are held about medical cannabis have held up a continuation of the use of the drug, so for the moment we are looking about for something else, even though the dronabinol works well.) The phenergan shot of this a.m. removed me from active life for the rest of the day; I slept and slept away the hours. When I awakened at 5:30 p.m., the nausea was indeed laid to rest, but the trade off was huge! A day gone – carried away in an unconscious state.

The illness is gaining strength inside of my blood and bone. Since there appear to be more and more of the useless “blasts”, I have less and less proper blood for functioning, and I am very fatigued and only able to eat small servings of foods at a time. My body’s metabolism is becoming more inefficient so there is a slow rate of continued weight loss.

Charles acquired a bicycle for riding to his work at Concordia, just a bit more than a mile from our home. It is black with some silver touches, and he has a very fine helmet to match. “Two weddings and a funeral” was his laconic comment as he unloaded it from the car. I suggested that perhaps he should get a nice snug black leather jacket also, but he dismissed the idea quickly with “Oh, no. . . that is for motorcyclists.” Probably anything except plaid shorts would be quite nice looking on him. Threatening weather and occasional rains kept him from trying it out today, but there is a lot of sunlight at Sanctuary and its environs during the upcoming month of June.

Winds are wild and restless as the time of spring storms arrives. One looks out at the sky to see many clouds in constant motion – the street wisdom is that later on today, there will be a tornado somewhere as the heat and wind become more intense before sundown. Tranquil spirits are in California or off on cruises somewhere far away.

Who am I now? Another metamorphosis is taking place – I am definitely not at the “butterfly” stage. There is the constant pull of “what is” “what I want” and “how to deal”. Once I get past the “what I want” to “what is” without feeling really badly, then the “how to deal” part must be put into place. I got a blood transfusion on Friday but have not felt a great change in energy, and the food intake problem remains unsolved – I am still unclear about what will make me sick if I do eat – perhaps it is time to check out baby foods even if my formerly fussy taste buds become offended. The liquid diet continues to keep me going at the present, though I am slowly losing more weight.

Life goes on. Pentecost, with the wonderful celebration of the gift of the Spirit in flame and wind has been celebrated, and the church moves onward knowing well that it is loved and supported. Seeds in the garden are up and greeting the spring rains with eager delight, and our Alphie reached his fifth year, making him 35 years old in human count. He is at his zenith in age and should be a suave and sophisticated example of dogdom, however, this seems to have eluded him for he has an awkward walk that moves his body forward in a sway, sway, galumph, and he only achieves the beautiful image of the chocolate lab upon occasions when no one sees him but me. But the joy he brings to us is even larger than his huge smile and that is more than enough. We delight in what is good and we continue onward in hope – one day at a time.