Writings of Constance Ore ( 1937 – 2010 )

April’s almost gone. We’ve gotten enough rain in the last hours for water to fill the paths through the wetlands; it’s the brief Nebraska promise of lush excess that fades much too quickly as hot sun and wind return. I started the day reaching for the Oxycodone since the kidney’s response to my first movements took my breath away. “Hello, Rush Limbaugh” I thought, since he hit the news yesterday with his addiction to yes, Oxycodone. Great news, that. . . surely I won’t be pathetically pleading for more and more at some future date.(!) Later, I commented to Charles that we needed to get dog food, and he, just removing his rain gear from his morning walk with Alphie in the rain, replied, “Yes, that, and I have the big rehearsal, then I have to practice for tomorrow’s services, then I need to do some cleaning. . . ” and I began to tear up thinking about his constant struggle to keep up with all of life’s detail. I immediately felt a need to apologize for getting weepy, thus making it impossible for him to even comment, and he finally said, “Look, I haven’t come remotely close to singing the ‘Poor Me’ song. . .” then he added thoughtfully, “I’m not even sure what key that would be in.” This had us both laughing, and later we sashayed down the stairs wonderfully coordinated hip-to-hip and step-to-step as we moved onward into the rest of our day.

I was invited to a breakfast with women I have known over the years, but with whom I have not become close. They are a group who have met on Saturday mornings to share a meal and life’s experiences for many years, so I was today’s new element. As the conversation evolved, I asked them to give commentary on the subject of “suffering” and in the ensuing discourse, it became apparent to me that I was in the company of people who had dealt first hand with all aspects of this part of the human experience. In recounting past times of awful pain with dreadful illnesses, one said, “I got to the point where I wanted to die. . . I really just wanted to die.” Faith and a husband’s appeal saw her through that time, she said, and she determined to do her best and go on. I have not been there, where I wanted to die, and I sat there and looked at this woman whose brief commentary revealed so much about a journey already taken which had to have held more pain and suffering than I can imagine. She should have had a huge gathering of medals pinned across her front for courage and faith and grit. We all spoke of God and the impossibility of imagining lives lived outside of the hands of God and the faith community. I drove home considering how fine my life really is, once again thankful for the good stuff, including Charles, dear ones, friends, Oxycodone, Lovenox, and Alphie.

How could a day like today be so heavy? The sunlight has been perfect, the trees are filling out, nature is singing loudly and my blood cell readings are up. Yet, my molecules and spirits are flat and down. When I got out of the hospital, it was a joy, as always when one moves on from the place of repair, and I suppose I assumed that I was in order, but this was not to be. I had been given a patch for the pain; this in turn was giving me nausea and swimming head making the price too high. Yesterday morning was spent at the oncologist’s office talking through the mysterious blood clot in the kidney, how to control the pain, and so forth. The patch was taken off with the decision that other approaches to pain control would be tried, and yet more tests were ordered with the hopes of tracing the source of the arterial clot. Either it had come from the heart, or it occurred at the kidney site because of a narrowing of the artery, or something like that. I received the last chemotherapy treatment, the injection of the Neulasta, the injection of the Aranesp, and went home. The nausea increased, making all food and scents of food dreadful.

When I went to bed last night I was convinced that today I would be out from under the pain patch residue, and since the numbers were better, I was also certain to have energy and life would move forward in a better way. This morning it was all bad; no energy at all, no appetite, no joy anywhere. I gave myself the injection of blood thinner, called Lovenox, of all things (one of the warnings is not to use it is you are allergic to pork – I don’t even want to think about the connections that might have.) Everything is self contained with the medication already pre measured in a syringe which is wrapped in heavy plastic. The needle is one half inch long; in all of the injections I have been getting, I always averted my eyes, thus sparing myself the sight of a needle disappearing into my flesh. Now of course, I have to pay attention and one half inch of needle seems quite a lot, actually. It goes straight in there by the navel, I push in the syringe, the stinging begins, I withdraw the syringe, pat the entry spot with the alcohol, and that’s that. This has to be done every twelve hours. Then I push at the top of the thing, and a plastic cover snaps down and over the needle part so that it is not a danger. I am to save all of these and bring them to the oncologist’s office for disposal.

I slept most of the morning, then went out for a walk through the woods, hoping for some uplifting thoughts and emotions. As I walked along, I realized that I would not be able to do the Cat Scan test planned for tomorrow morning; it would mean another IV put into the top side of the hand and another jolt of dye with the intoned words, “This may sting and you will feel like you have wet your pants, but it just feels that way.”
“I just can’t” I wailed to Charles, “I just can’t. . . ” and he held me and said, “Then don’t do it. . . it is your body, you must always remember that.” I cancelled the tests, and tomorrow morning, Heidi will come out instead, bearing good cheer and energy and food; she will pick me up again, setting me forth on the path that is mine to take – I end the day giving thanks again for love and support and dear ones who care so deeply.

Late this afternoon, I was released from the hospital – Sanctuary looks stunning in this last light of day with gold on the tree tops and dark shadows beneath. More species of birds came in over the weekend, so the songs of evening are more harmonious than before, making it such a joy to be home again! I have added a patch just below my right collar bone for pain control, and the daily regimen is going to include two self administered injections of blood thinner. I gave myself the first shot under the supervising eye of the RN. . . not bad, I thought, though practice will surely improve the whole experience. The shots are given in the abdomen, in a continuous circling of the navel – since the prescription is for a year’s supply of syringes filled with the medication, my understanding of this is that it will be a part of the new life for quite some time. The arterial blood clot is apparently a mystery yet to be solved.

I’m hopeful that the medications will begin to balance in the next days; right now, I am struggling with nausea and keeping my eyes focused. . .I have the feeling that if I looked in the mirror I would find my eyes wandering off in opposite directions and that would be unnerving. Surely life will appear to be more manageable in the light of tomorrow’s new day! Right now, I think that there are so many medications lined up in my brain’s pharmacy that the sorter cells are flinging up their hands in despair and losing track of what goes hither and what goes yon. Tomorrow I get the last of the seven chemotherapy treatments, the Neulasta injection which is to nudge white blood cells into action for the next ten days and another blood draw. I would not mind being someone else for a day or two.

On Saturday beginning at midnight, one-third of my Kidney commenced to die.

We all had been rejoicing at the happy news that I could go out into the world a bit more, and I was feeling quite energetic. Friday evening we joined friends for dinner, and at its completion the pain began. It was located on the left side of my abdomen, and as the night advanced, so did the pain.

Nurses and doctors repeatedly request a rating of pain, “where on a scale between one and ten?” They ask. Ever since giving birth to three children, I have used those final minutes of the birthing experience as my 10, and this time I spent many hours at 9+! The unrelenting pain had us at the Emergency Room at dawn and there I had the appalling challenge of drinking two glasses of the vile liquid required for a CAT scan. I had been vomiting all night, unable to keep any pain medications down, and now, with nausea sitting at the back of my throat, I was supposed to drink the Pinesol flavored concoction.

Our Emergency Room nurse was young and remarkably callus – she chirruped at us a little more loudly than you would talk to normal people, and she stood facing her computer screen entering needless information while I sat rocking back and forth in agony.

I finally said, “I am looking forward to the IV with the pain medications – soon, I hope” and she said loudly, “I’ll get to it pretty soon, I just want to enter some more things here . . .. I sure wish you could remember how many milligrams of Estropipate you’re on, etc., etc., etc.,” I did get enough fluid down so that the scan could go forward, and we were not surprised to hear that I would need to be hospitalized – though – We did not know what the problem was at this time.

The Emergency Room Doctor reported that a blood clot had been found in the Kidney, I would likely need blood thinners to dissolve it, and a hematologist would read the results of the scan and give a more thorough evaluation.

When I was taken to my room, we found that the Saturday staff at the hospital consisted of recently graduated young nurses, under the supervision of one more experienced nurse. They did not permit me to drink water because they did not know if surgery might be required. This resulted in dehydration, which in turn made all efforts to insert an IV very difficult. Finally, the hematologist on duty came in and says rather abruptly, “You lost a third of your Kidney, but don’t worry, you have one and two thirds left!” I said, “What? I love my Kidneys! Do you mean that this part of my body is gone forever?” The hematologist said, “That’s what I mean.”

I was told that an arterial blood clot formed on my left Kidney and as a result, the Kidney was deprived of blood. It died in 30 – 40 minutes from being deprived of blood. An arterial blood clot is quite rare, but I was told that I was fortunate in that this one took place in the smaller artery leading to the Kidney so only one third of the organ was lost.

Today, the blood samples are getting sent hither and yon, and the mysteries hidden within may be revealed – or not. Meanwhile my regime will now include a blood thinner, “for the rest of your life” and a patch containing a pain killer, “for several weeks – until the clot dissolves.” I will be hospitalized until the correct balance of blood thinner has been determined.

Charles and I look at one another and say, “what is happening now? Why this – another rarely seen event?” We hear, “Live by faith, my righteous ones” and we go on – it is the only way we can.