Writings of Constance Ore ( 1937 – 2010 )

Autumn continues its beautiful ways far outside my fifth floor hospital room and I continue the struggle inside the hospital room. Now the gastroenterologists are studying the situation and I wait for encouraging words about getting to return home with a body that can function properly. One of the partners from the oncologist’s office stopped by and we went through the “What is going on? What will happen next? What do we know?” questioning and the problem appears to be that my body and the Vidaza are not dealing well anymore. The obvious next step is stopping the treatments and letting the bone marrow recover for a while. However, while the chemotherapy is stopped, the blasts begin to gather in their deadly little way, and there is no returning from where that is going. Over the top of this problem is the one with the shooting pains into my left temple, for which I am consuming great amounts of Oxycodone – this can’t go on and on either, and I haven’t even gotten someone to address that. The head pain is such that I want to pull my hair just to distract from it; when the drug kicks in, it is though I move from one reality state into another that wraps me in gentle waves and carries me beyond the pain. I can truly understand why one can become addicted to drugs.

Now it is evening and I am at home. All tests came back normal, so there was no real reason for me to stay hospitalized; the gastroenterologist said very nicely that if I got dreadfully sick again, why, we didn’t live too far away – we could just return to the emergency room and be readmitted. The doctors seemed pleased to let the head problem be dealt with here in Seward. So happily homeward we went, loaded down with drugs and advice and in the coming days, we will determine how we will go forward vis a vis the Chemotherapy. Since the recurring theme is not knowing, we constantly revisit how to live by faith – this starts out being more difficult, but as the props are pulled away, it becomes easier since it is all that remains.

Alphie feels the need to lay under my legs with my feet propped up on his body – Charles said that he was quite morose in my absence, and such joy at a person’s just “being” makes it very evident why dogs are so cherished by such a large population. Tomorrow the weather is to continue uncommonly warm and sunny, so it will be a lovely day to savor all the fine things that make up our Sanctuary.

Bryan Hospital in Lincoln, NE. has been updated since my last stay here because now I can use the laptop computer and a cell phone from my room. My flu, or supposed flu, since as usual, nothing is for sure, continued to worsen in spite of gallons of Gatorade, many anti-diarrhea pills, the BRAT diet and high hopes that soon the stomach cramps would lessen and life would proceed back to normal. By midnight Wednesday, I began to shake uncontrollably, and on Thursday morning, we were at the Oncologist’s office. We were sent to the hospital within the hour, and within two hours, the pumping of IV fluids began to bring me back to the human race. Because the intestines became inflamed, I was not given food or water by mouth until this afternoon, and now we wait and see if some solids will actually be able to be dealt with by a normally functioning internal system. I had no fever because I have no white blood cells to mount a defense against anything – a fever is caused by the immune system sending out the calvary and beating out interlopers; the chilling and shaking is therefore the ultimate sign that the body is no longer coping. Up until now, the rule was always, “Do you have a fever?” This no longer applies.

Last night at about one AM, the IV began its alarm because it needed refilling, so I called for the nurse. Two of them came in – the first one was the RN on duty, and when the second one appeared, she asked, “Are you working on this Ward?” The second said, “No, I’m a floater between fourth and fifth floors”. I asked, “Does this mean that you are presently floating, as in are your feet above the floor? Because if you are, then you must surely be an Angel of Mercy”. Both of the women looked a bit bemused and then the RN laughed and said, “I just got that. . . ” The second smiled and said as she was going out the door, “I’m floating – an Angel of Mercy. . . I like that, I really like that.”

This afternoon we were heartened by the doctor’s report that the X-Rays were all fine, and that the abysmal blood readings were at least partially caused by the last round of Chemotherapy, and thus could be addressed by continued Neupogen and Aranesp injections as needed. We received assurances that if the food doesn’t cause intestinal cramping and energy returns with the hydration, I may go home on Sunday. Heidi was with me when the doctor came in with good cheer and good news, and after she left, Heidi did a wonderful happy dance of thanksgiving. I spent the last week wrapped in prayers and God’s assurances as presented in the Scripture, and in the sounds and words of hymns and spiritual songs that have gathered in my memory over the years.

Last night we had our first freeze of the season and properly forewarned, we went out and picked most of the tomatoes that were still on the vines. They are placed on the garage floor on newspaper, and as they ripen, will provide enjoyment well into winter. Many of our deciduous trees were flinging down leaves today, eschewing a time of color entirely and going from tired green to bare branches in a few hours. The honey locusts on the hill, however, are gifting us with their tiny leaves of true yellow balanced on the tips of their twigs and we rejoice in their color for at least a day or so.

Near our house and the bird feeders, there is a territorial battle going on between three sharp-shinned hawks. While they chase each other from willow to cottonwood, their intended victims (the little sparrows, nuthatches, and finches) huddle under the safety of the wild rose vines that have climbed over a number of plum bushes near the stream. At one point, one of the hawks sat on top of our largest bird feeder and seemed to say, “Mine! This is all mine!” Moments later, another came swooping past and the chase continued. So much for “peace in the valley”.

This past week I have been the victim of flu. With compromised immunity, the germs have had a field day within my system; instead of staying for a short visit, they are making themselves at home and apparently having a very fine time while I drink Gatorade and eat the B(bananas)R(rice)A(applesauce)T(toast) food regimen as best I can while popping Imodium AD and hoping for the best. The blood readings today were abysmal and the oncologist’s office repeated several times that I must be very aware of my temperature, and at any sign of a fever, I must see the doctor at once. Meanwhile, I have been prone in the recliner coveting just about everybody – Charles, with his great energy and good cheer, my friends, seemingly hale and full of accomplishments, my children, the neighbors, the mailman. . . Alphie. Well, perhaps not Alphie so much though his bouts of hysterical joy at the simple word “Walk” do provide a reminder to take whatever good one can from each present moment. I believe that we had lost a bit of fervor in our compulsive hand washing, and this experience is ramping up the discipline as nothing else can.

She was sitting three chairs down in the Chemo room, and her conversation was directed at the woman sitting next to her. In a strident voice, she announced, “I told my doctor a thing or two. . . something has got to be done about the pain; you’d think that they could figure out how to deal with that by now.” The other woman, with scalp showing through thin black hair that was either coming or going, murmured something about being sorry about the pain, and the woman continued, not quite so loudly, “In fact, you’d think by now, in this day and age, they’d have found a cure for this. . .crap.” Again, the other woman said something in soothing tones, and the first woman laid her head back and said, quietly now, “Life is hell. . . it’s just hell.” She was crying. At such moments, one might think the words, “Don’t worry, it’ll be better tomorrow” or “Hang in there!” or like phrases would be appropriate, but those are times that one must move through alone. The perception that you had help walking though “the valley of the shadow of death” may not come until after the journey.

I have been thinking quite a bit about life and death since the last visit to the oncologist and the report of the rapid increase of blasts in the blood stream, and a recurring thought for me is how life is not all bad. There are moments in each day that are good and worth the living. I think I would be more fervent about the sentiment expressed in spiritual songs about arriving at the Promised Land, or crossing the River Jordan if I lived in a basement apartment next to the freeway, with leaky plumbing and a husband who was a slob and whined a lot and with neighbors in the next apartment whose television was turned up loudly until late at night. Instead, my days move forward in a beautiful physical setting of home and land and I have faith in God, a wonderful husband, family, friends and yes, even the dog to bring me joy and delight. The difficult part is the blood that is diseased – the hours come where there is no energy, the arms and belly are so covered with the bruises of injections that even cloth hurts to the touch and there are no thoughts that are interesting. Yet within that framework, like the single defiant daisy that is blooming beside the walk in the yard, life beckons and has promise that tomorrow will be better.

This October seems to have confounded the growing things in Sanctuary. The overnight temperatures remain in the fifties, so there are crickets starting up with tentative sounds, and some frogs have begun to croak along the stream. While the plums and cottonwoods have flung their leaves to the winds quite some time ago, the willows remain leafy and green, perhaps not knowing whether to stay or go or unaware of the passage of time moving all of us ever closer to winter’s domain. If north winds bring great drops in temperatures, and the rains turn to sleet and ice, many of these trees will be sad and damaged so I say, “Drop those leaves before its too late!” as I walk past – naturally they remain cheerfully oblivious as they wave in the wind.