Writings of Constance Ore ( 1937 – 2010 )

High heat and humidity encompass the days at Sanctuary; mosquitoes and spiders flourish and Monarch butterflies are beginning to gather around the thistle and milk weed plants. The spiders are especially active – the paths between trees and tall grasses appear to be prime real estate for fine dining because there are webs at face level every twenty or thirty feet. When we walk after dark we see the various species of spiders in the flashlight beams busily wrapping up the catches of the day. We carefully move around and under the web work, and keep our mouths shut just in case we miss one and find an unwelcome creature trying to get off our teeth.

This is also the season for wildflowers; whenever I see them, I think of the person(s) who first discovered them in the grasses and delighted in their unexpected offerings of beauty in an otherwise treeless and severe landscape. The blooms we see scattered across the pasture right now bear the wonderful names of Partridge Pea, Ironweed, Snow on the Mountain, Goldenrod, Gayfeather and Blazing Star.

I have completed my thirteenth round of Chemotherapy and with the exception of a great deal of soreness at the injection sites, all went better than expected until the sixth day of seven; then the exhaustion, nausea, etc., arrived in a manner which seemed to be my body shouting, “Enough already!” Now I am back into the routine of daily Neupogen shots for ten days and weekly blood draws until October 2, which is the date set for the bone marrow aspiration. It is hard. I do try to recall all the good times so recently enjoyed and give thanks for them, but I think the contrast makes the present reality even more difficult to pick up again. Charles fills the air with encouraging words and reminds me that he still cannot cook at all well – so onward we go. C’est la vie.

“The nice thing about rationalizing, it needn’t be rational.” This wonderful statement is lifted from a letter from my sister-in-law, and I wish it could be applied to reality checks. Tuesday afternoon was the latter, with yet another discussion about the nature of MDS and its’ incurability. According to the wisdom accumulated thus far, only a bone marrow transplant has ever effected a cure, and for myself, not even an option. “But I have been feeling so much better” I said, “and the last two rounds of Chemotherapy were morphing into more difficult experiences, so perhaps I was getting toxic.” Not necessarily, said the oncologist; it could mean that the Vidaza is beginning to lose some of its effectiveness. He reiterated that the illness is there, waiting. Thus far, he said, it has been suppressed and instead of life moving forward in a downward manner, it has been held steady on an even plane. We discussed the bone marrow aspiration that would give a new insight into what is happening within, and the decision was reached to do it after one more round of therapy since the bone marrow reading takes at least a week to complete, and the doctor felt strongly that I needed to have the Chemo immediately. Today is the third day of the seven, and it has not been nearly as severe as the past two rounds, and that has been an unexpected gift.

On Monday, Charles announced that he needed to get an anniversary card, and I said, “Please don’t. . . I haven’t gotten you one this year.” He immediately replied, “Of course I am going to buy a card – Hallmark depends on it! And I’ll just get your card for me at the same time.” I thought, “Now that’s a new approach.” He came back later with a large bouquet of roses and two cards in blue envelopes. On Tuesday morning we opened them, and his card to me had a photo on the front of an older couple pictured from the shoulders down, holding hands, and facing the ocean. They stood on the beach in ample, well-wrinkled and well-worn bodies; he in red shorts with a huge white star on the rear, and she in a floral bikini. The card opened up and inside the message said, “One way or another, we still turn heads. Happy Anniversary!” The card selected for me to give to him had the message on the front that said, “It’s so wonderful being married to the greatest spouse in the world!” Inside, the words were, “Isn’t it, Dear? Happy Anniversary”. Thus we began this 47th year with laughter and renewed delight and thanksgiving for a wonderful life together. The children published one of those “Then and Now” sets of photos in the local Sunday paper, so we were well-remembered. Charles would say, “Onward and Upward” and I will add, “Hallelujah, Amen!”

We returned to Sanctuary last Tuesday, the 7th, and found it to be lush, overgrown, and heavy with humidity. This condition for Nebraska in August is almost unheard of. On the next morning’s walk, fog hung over everything, and spider webs of every kind were outlined in moisture. Some trees looked as though they were anchored to the earth with guy wires. The wrens, orioles, red-winged blackbirds and grackles were gone, as expected, and the only birds still singing at all were song sparrows, meadow larks, rufous-sided towhees, and an occasional cardinal. The paths were almost hidden by the tall grasses leaning in from both sides, and Charles commenced mowing immediately in order to reclaim our space.

Alphie’s joy at our appearance at the kennels was as boundless as a dog can express. He leapt into the car with the absolute intent not to get out of it again until we got back to Sanctuary. Only after checking every room and space in the house did he wish to go for a walk into the woods. Now however, the heat and humidity have slowed him down greatly – rabbits can run very near to him and he doesn’t even pretend to give chase.

Our incredible road trip’s ending with the wedding in San Francisco amidst good friends and family was a perfect conclusion to three weeks of time outside of time. The cancer and the chemotherapy and the blood tests were all put aside and the MDS was like something resting inside a book closed and placed on a side table. My health remained good to the degree that we didn’t talk or think about it. Now the book is lying there, still unopened, but moved closer as a return visit to the oncologist looms ever nearer. It is all “wait and see”. The blood readings will likely influence the actions in the near future; my hope is that they will be normal, or nearly so, and my plan is to request a bone marrow aspiration to see what is happening with the cell formation at this time. Perhaps there is grand improvement, and the chemotherapy treatments can be delayed, or lessened, or given up entirely for a while. “Mind over matter” and miracles might shape the future – whatever the outcome, I have just completed a life experience that stands far above all the other events that have defined my recent past, and the loveliness of that will surely color everything that happens in the days to come.

The time in Santa Barbara with friends Julie and Gary went quickly with all the remembering stories and the present delight of shared adventures. Many forms of art were displayed in their home, and faces of all kinds were portrayed, causing the rooms and spaces to come alive with personalities of every description.


 

When we left yesterday morning we completed our time on the coastal highways by driving northward on Highway #1 to Carmel, a beautiful town with multitudes of flowers everywhere. Anything called Carmel-on-the-Sea has to be wonderful, and so it is. We are spending two days here as we wind down our road trip. Our morning walk took us down the main street to the ocean, where lots of people and their dogs were out enjoying the sea and sand. There were retrievers that reminded us of Alphie as they ran into the waves to capture balls that their owners threw into the water. Of course, these dogs brought them back nicely. . . Alphie has never achieved the correct concluding action – he keeps the ball and dares you to try to get it out of his jaws.

These past weeks have risen to the top of the list of splendid holidays. The entire coastal road from Oregon southward though California is so varied and beautiful and interesting that one could immediately repeat the journey and be delighted all over again by the wonderful sights and experiences. The birds that we noticed throughout were the noisy white seagulls and the floating black vultures that sailed out from the mountain’s edges toward the ocean. Pelicans were always present in varying numbers, with the greatest gathering of them sitting in huge noisy flocks on large rock outcroppings near the shores of Pismo Beach. We were aware of many other birds flying about, and we enjoyed the sight and sound of them without knowing their identities.

Sometimes, as the news is heard in the Midwest, it sounds as though California is packed tightly with people, but we saw many miles of sparsely populated open beaches and land. The villages and towns varied greatly in their personalities – many of them were either preparing for or in the midst of local festivals, from kite flying contests to bicycle races through surfing and boating events. Farmer’s Markets provided us with lovely fruit which we know we will not experience again until the next time we come this way.

Tomorrow we come to the conclusion of our adventure and we will shake out our wedding finery to prepare for the weekend festivities. Charles will retrieve his organ shoes and his folio of music and another joyous occasion will enter the annals of our family’s history.