Writings of Constance Ore ( 1937 – 2010 )

My lifeline would be a zigzag right now, this 40th day after the last round of Chemotherapy. One day will find me with enough energy to run a few errands and do some cooking and laundry, and the next will be one in which just walking around Sanctuary is a huge chore. Some mornings feel as though there has been a body switch during the hours between midnight and dawn and the one that I haul out of bed is at least twenty years older than the one I tucked in for the night. The blood draw of this week indicated a drop by half from the week before when the added Neupogen shots had returned it to normal. Of course, there is anxiety because this response to the eleventh round of Chemo is so different, and we didn’t find out why from anyone because there is no information to be shared. So, what to do?

Each day, life has to be picked up and arranged into something that can be managed because it cannot be understood. “Live by faith” is a biblical directive that helps a great deal, and also the very direct statements by Christ about not becoming anxious about the future. There are the emotions that need to be beaten back – frustration at a body that cannot be sent forth into house and garden to do those wonderful tasks of living because even if the mind is energetic, the tissues are so weary; sorrow for taste buds that won’t awaken, and the wailing in the background for things lost…i.e. piano lessons with the granddaughters because the energy just isn’t there, and so forth.

Ah well – on the “Get a Grip” side of life, the stinky cheeses arrived this week, and now all three reside, very snugly wrapped, in the refrigerator. I picked up the French one and sniffed at it this morning, and sure enough, there was some scent that remained on my fingers in spite of the careful wrapping. Now I will research a bit to find out how best to serve them; surely one at a time, and perhaps on the roof or porch with large amounts of wine and bread. Perhaps we will cut them into dainty chunks and wrapped and beribboned, deliver them to our friends saying, “We were just thinking about you today, and thought we would bring you this little gift”. (Or perhaps not!) The month of May will bring children visiting, flowers blooming, graduations, Mother’s Day, and wedding showers. Life goes on, and I am still in it encircled in love and the physical beauty of earth’s awakening – there is much to look forward to, and much for which to be thankful.

There is a fierce wind today and as I type this I can look out of the high windows to watch gray and pink clouds moving very quickly across a pale blue sky. The branches of the cottonwood off to the southeast are filling up with aerodynamically prudent blackbirds all facing into the wind. Alphie is lying here with his head resting on the sill of the open south window and Charles is finishing off last week’s Sunday New York Times. This is a tranquil ending to a week where death arrived inexplicably to some people, while others were spared just as inexplicably. Humanity tries to grasp the meaning of such events and through all the interviews and analysis and media coverage, there is a sense of seeking tidiness and order that cannot be found in a complicated and messy world.

After this round of Chemotherapy my tongue has lost much of its ability to discern tastes. The sensation is like having scalded it with a drink of a too hot beverage, and it has improved only a little by this 33rd day. I told daughter Janna and was bemoaning the fact that as an avid cook, I miss this sense more than any other loss to date. She determined that perhaps some pungent cheeses might call my taste buds to attention and ordered some for me. The British descriptive paragraph reads as follows: Stinking Bishop – Select Cut – Winner of the 2001 Best Exported British Cheese Award, Stinking Bishop is a washed rind cheese dating back to the Cistercian monks who once settled in Dymock where this cheese is made. Washed in fermented pear juice (also called “Perry”), the cheese develops a stinky, pungent, orange-colored, sticky rind. Named after the Stinking Bishop pear varietal, this cheese is a spectacular dairy experience.

Janna also ordered a cheese from France which has this description: “Made in a tiny town in the Burgundy region of France, Epoisses is one of the great cheeses of the world. It is a name-controlled cheese that has a very pungent aroma and rich, creamy interior.” The scent is presented this way: “Please beware: Epoisse is so stinky that it is banned on public transportation in France, a country usually tolerant of such aromas. This aroma will prevail in the box on arrival, so don’t be alarmed.” The Italian cheese carries this information: “Taleggio’s soft, incredibly flavorful interior is creamy in texture and has a pungent aroma. The cheese imparts the essence of the Italian countryside in such a demonstrative manner that you could swear you were sitting among the cows on a grassy hillside in Lombardy.”

Now this gathering of pungence from around the world would never have occurred to me, and there is something wonderful about adding a daughter’s creative moments into the texture of my days. I am looking forward greatly to the delivery of these viands and I will surely wish to share them with all my family and friends.

[MUSIC – EIGHT: VII Diversion II ]
How can I express the relief we felt at the blood reading today? I spent almost a month spiraling downward in health while experiencing new and nasty side effects from the Vidaza, and we still have no guidelines for the future. After last week’s poor white blood cell count, five more injections of Neupogin were ordered, and their entrance into the body brought forth intense bone aching and nausea. Today, the reward was a blood count that was normal. Once again, I feel pulled back from a place that I have not really wanted to go, and once again, there is thankfulness that when I recover from the Neupogin’s effects, the upcoming days of spring may be enjoyed.

It is difficult to think about the body as an entity that is no longer a comfortable place for the spirit to abide. Many people live in chronic pain and do so without complaint and with great courage. This time, I think I began to question the limits to my own courage, and it is a whole new subject for thought. Charles and I have visited at length about life in this strange pattern of having the therapy of chemicals carrying me into misery and pain, then slowly getting back to a place where the days are truly good days, only to begin the cycle all over again. As I have said before, we have been told that this is the requirement for continuing life on earth.

Meanwhile, spring has reemerged at Sanctuary with bird song growing ever louder, resumed frog choruses, and bright green grasses underfoot. The weeping willows down by the stream are a dreary brown. They were left there by the very cold weather that came as they were delighting us all with their bright chartreuse green fronds – I whisper to them words of encouragement as I pass by, telling them it is safe to try again. The day lilies lie white and limp, looking thoroughly disheartened, but the maples are tentatively sending out little shoots that peer out around the limp seed pods that had come forth before. So it goes throughout the plant kingdom outside of our doors. This morning, five deer ran away across the meadow, all with their white tails flagging warning and making a lovely pattern of oval shapes in motion as they bounded away – moments later, ducks flew overhead, and Alphie chased up several pheasants. With loud meadow larks song and the light of a just rising sun and breezes moving about, I felt as though I had been invited onto a Disney movie set. I must conclude that it is just such times as these, and coming back to a wonderful breakfast prepared and served by Charles as well as the conversations and laugher we will share in the day that propel me forward, and for now, that is enough.

(Next entry: April 20)

Last Monday was a “Set Aside Day”. These are times that Charles has so named because they are taken out of our routine pattern and include adventures out of the ordinary. We were in Denver under a beautiful sky in wonderful temperatures and with good friends. We drove into the mountains to have lunch, and in the evening our friends took us as their guests to the NBA Basketball Game at the Pepsi Center. The Denver Nuggets were playing the Los Angeles Lakers before a crowd of about 19,500 people. There were so many amazing things about this event – the assumption seemed to be that the general attention span would be around 10 seconds so there was constant sound and movement in the vast space. For one example, from a catwalk near the ceiling, T shirts were randomly parachuted down into the masses of people, with one carrying a free ticket to fly on Frontier Airlines. And so it went – the crowd dynamic was a huge, rumbling thing drawn together by loud pulsing music much of the time, and instructions on huge screens in the center of the arena led the people in cheers and roars at certain times during the game. There were cheerleaders and dancers and at the half, a woman on a very, very tall unicycle balanced while tossing bowls with her right leg upward to land on top of her head. It appeared to be an extraordinary feat and everyone rewarded her with ooohs and aaaahs.

A particularly riveting event of the evening was the appearance of a group of older women calling themselves the “Silver Hotties” who came out and gathered in a formation in the center of the floor as the younger women had earlier, and proceeded to do a routine to loud music, shaking their various body parts and flinging and swirling gray hair about. It was not really a sight to write home about, and I was taken by two thoughts. One was looking at the beautiful and buff female dancers, scantily clad with generous cleavages and long hair as they sat on the side observing their elders and wondering if any of them would think that one day they too would try to relive something long past and gone. The other thought was imaging reaching a certain age and one morning standing in front of the mirror, smoothing the eyebrows, putting on the lipstick, tossing back the gray hair, standing sideways, hand on hip and looking just so. Then, having reached the conclusion that by golly, I’ve still got it, going to the telephone and arranging an audition with the Silver Hotties with hopes of dancing right into belated fame and glory. It did make me smile.

Today the blood reported that my white cells are still on a trek downward, and I will need to delay a planned Friday morning cataract operation as well as begin to wash the hands and take precautions because I am immunity challenged again. I will resume Neupogen injections to see if the blood can improve a bit and after five days another blood draw will direct what happens next. I try not to think very deeply about this because it becomes a fearful thing – rather, I continue the conversations with God and hope for the best.

(Next entry: April 16)