Writings of Constance Ore ( 1937 – 2010 )

Today I had the second of five Chemotherapy infusions. All went as expected, and with a port, it is not a great trial. Yesterday, when I returned to the Chemo Room at the oncologists, the place was filled, and in the chair next to me was a woman who looked tired and grumpy. She said to me, “Is this your first time here?” I assured her that I had been many times, and she sighed and said, “Well, so have I. I don’t think I can go on much longer. . . I have colon cancer and lung cancer”. I immediately commiserated with her and wished her well as she went on, and after a bit she said, “Well, what kind of cancer do you have?” I said, “Mine is Acute Myeloid Leukemia”. Silence. Then she said, “Oh” and no more. This led me to think, “Goodness, this is like Chemo room poker! She had a couple of aces, and I have a Full House. Then I looked at the man next to me on the other side, lying there very pale and frail, and at my glance, the woman sitting with him and having overheard the conversation, said to me, “Prostate cancer; it’s very hard for him, bless him”. Once again, I commiserated and thought, “Royal Flush” right there. Of course, the true winner of the house was the woman standing at the desk in the Reception room hearing that she didn’t have to come back for six months because she appeared to be in remission. She left beaming with delight.

I got my voice back after dropping the inhalant. That has been a true joy, and again, my oncologist went through the chemical contents, etc., and said, “This just doesn’t make sense to me. . . that stuff should not have caused you to become so hoarse.” He immediately contacted the pulmonary guy to see if he knew anything. One tends to move right on in these instances realizing that the medical community cannot know everything as they must juggle enormous amounts of information. I love having my sound back because it goes before you and informs the person(s) to whom you are speaking something about yourself. I heard myself from inside my head and could see exactly how it was affecting the hearers.

Tomorrow is Ash Wednesday, and though I will not be joining them, thousands of worshippers will gather and receive the cross of ashes upon their foreheads with the words, “Ashes to ashes, dust to dust. Dust thou art, and to dust thou shalt return”. In our society, such a direct reminder of our mortality is rarely ritualized, and it is always good to be stopped for a moment in the rush of living this life on earth to consider our common end. Of course the words of comfort follow, “I am the resurrection and the life” says the Lord, “and those who believe in me though they die, yet shall they live, and whoever lives and believes in me shall never die”. (John 11:25-26a)

While others can report with modest pleasure about their adventures in Mexico or California or other places of joy and sunlight, I am pleased to announce that I have added the experience of C-Diff to my growing portfolio of journeys with my body. After the release from the hospital, I commenced life with so many medications that I made a list to post on the front of the refrigerator so I can avoid drug interactions as well as remember to ingest them. Yesterday morning it appeared that the C-Diff challenge has been conquered. The medicines must go on however, to be absolutely sure. On Friday, after flinging down the last two of the heavy-duty antibiotics, I will return to the oncologist to see if I can resume Chemotherapy.

Meanwhile I am incredibly hoarse, with a voice that can come out high and whispery, low and whispery, whispery and broken, or with that sort of rattle that makes people you are talking to begin to uncontrollably clear their own throats. Good friend Linda commented that I sounded as though someone had hands around my neck (presumably applying pressure with thumbs on the voice box). This does several things. First, it causes me to think twice before reaching for the telephone to visit with a friend, and secondly, it causes receptionists in doctor’s offices to respond quickly and with a touch of “Oh, dear” in their communications. Now, after more X-Rays and no new insights, it is hoped that one of the inhalants that I have been prescribed and highly encouraged to take may be causing the hoarseness. This would be a satisfactory and simple answer to the problem – I looked up the product on the Internet to see whether this side effect was common, and saw that it occurred in about 1% of users. Of course, should it be true, than it has happened in 100% of this user.

Alphie’s joy at my return was so very gratifying. He followed me about and as soon as I sat down, would lay his dear head on my feet. “Oh Alphie,” I said, “I really missed you, too!” more than once, but then hastened to assure Charles that I missed him more, of course, and he finally said, somewhat drily, I thought, “It’s OK, Connie, you don’t have to tell me that you missed me more than you missed the dog. . . I understand”.

Without faith, family and friends I would have folded a long time ago. This powerful support system is larger than words can encompass, and it is for this that I am most thankful. My conversations with God are wide-ranging and comforting, my dear ones are unfailingly incredible, and my friends’ prayers and words of encouragement continue to lighten and brighten my days.

My enjoyment of the blood transfusion “bump” was short lived. One week after receiving the red blood, I started into an intestinal problem that increased in intensity each day. By Sunday morning, we were at the Emergency Room because I was in great pain with a distended belly and dreadful diarrhea and throwing up. I am now hospitalized in a room that is kept closed because of my neutropenia. People have to check in before visiting me and everyone must wash hands coming and going. The diagnosis I have been given is that of having “Clostridium difficile” (‘Kloh-strid-ee-oom diff-ee-seel’), referred to as C-Diff. the C-Diff illness was made possible by the ingestion of the antibiotics needed to stop the sepsis or blood infection in the finger. Those antibiotics then killed off the controlling bacteria that live in everyone’s innards, and this cleared the field for the bad ones to proliferate. They are also living in everyone, but are kept in check unless antibiotics kill them off. When that happens, the wicked bacteria grow in great numbers and release toxins in the process. The toxins can eat the walls of the intestines, and generally can carry one off to eternity via that route. Now I am on another set of the heavy duty antibiotics (Vancomycin and Flagel) that are required to kill off these things, but in the process, with no immunities, other systems can go awry. So here I stay for a bit until this is gotten under control. Charles says that with myself gone, Alphie is very subdued and sad and no creature can look more tragic than our dear Alphie.

We have an anemometer to measure wind velocity on top of the house, and Charles told me that today he saw it hit fifty mph. This fierce south wind brought very warm temperatures for this time of year, and some rain as well. I am sorry that I missed the day and the drama; inside these walls everything is very quiet and controlled if one discounts the incessant buzz and tick of the IV pump and the air control system. The oncology floor is very busy with someone in every room – one of tonight’s nurses is very large, loud and officious, but the other one is quite nice, and fortunately the nice one seems to be in charge of most of my needs. The nursing job looks like a lot of hard work coupled with great responsibility, and most of the time, there is great appreciation for the people that have chosen this profession. Now we wait for tomorrow and the healing that we hope the medications can bring – perhaps I can return to my beloved Sanctuary soon!

Tuesday morning: I will be in the hospital at least another day and night – progress is slow, and I seemed to go backward instead of forward, so in the early hours right after the doctor’s visit, I had given way to tears when the Nurse Manager came in for the first time. She sat down and gave me great comfort and empathy, and I reflect now how incredible it is that I am given so much support and care by so many as I stumble on toward eternity.

Blood transfusions are miracle carriers, for the infusion of two units has meant that I am able to resume life in the normal cadences enjoyed by most of the human race. When I went in last week, the whole procedure started with the drugs introduced through the port, and these included a large dosage of Benadryl that was to act as an antihistamine in case of allergic reactions to the new blood. What was not known until shortly thereafter was that this drug caused my legs and arms to twitch and flail uncontrollably and a nurse came in, observed me and said cheerfully, “I’ve had this happen before, and I’ll just put ‘allergic reaction to Benadryl down on your chart’”. It took a day to recover from the drugs that came with the blood, but then life began to pick up considerably, and when I had the CBC yesterday, it showed that my hemoglobin had come into the normal range, an increase from a count of 8 to 12.5.

In the wakeful hours of the first night with a stranger’s blood now flowing within, I had time to consider what might have come with it. Would my dreams introduce new characters and places? Had this person been a night worker, hence, the wakefulness? I had to think of this very same fluid warm and flowing about through another human who took him/herself to a Blood Bank and donated some of it without ever knowing who would receive the gift. A whole new appreciation and awareness is now mine, and when I see people who look tired and gloomy, I tell them that a blood transfusion would likely work wonders.

February came to Sanctuary with sunlight and enough warmth to melt much of the snow, but on the second day, it changed its mind and returned to very cold temperatures and leaden skies. The great Eastern ground hog saw its shadow and loud predictions of six more weeks of winter came rolling over the land. It does occur to one that we are giving consideration to the actions of a ground hog though thankfully, no longer reading chicken entrails to seek guidance for the future. I am not sure what the difference might be, though the reading bit might take more training.

Next Monday the second week of Chemotherapy commences, so this is the week of delight in life and all of the happy moments that it contains. Even Alphie appears to be more joyful – he manifests this by picking up a toy or sock and coming and shaking it about in an invitation to play – he was far more somber in the past weeks, lying at my feet much of the time and sighing a lot. So, in Charles’ words, “Onward and Upward!” Thanks be to God.