Constance Ore is a retired Teacher, Choir Director, and Organist. And a formidable cook.
Yesterday we had the reading of the Bone Marrow report, and it was grim. The Acute Myeloid Leukemia diagnosis was very definite with 25% blasts and many other abnormalities in the marrow. I have already embarked on the only option for me (other than doing nothing), which is at least three cycles of Vidaza, with weeklong infusions separated by three weeks of “rest”. This may slow the progression of the disease; the hit on the existing blood cells will hopefully be diluted with drugs that force the stem cells to make more white and red. Yesterday, the blood reading indicated a small jump in the white cells, but the hemoglobin continues to go down, and later today I will get my first red blood transfusion which will make life nicer because there will be more energy.
Getting a blood transfusion for the first time is not quite as simple as I imagined that it would be. First, the blood must be “typed”, and then, I was told, “a runner will bring the blood for the transfusion from Lincoln”. Naturally, the mind conjured up a swiftly running person leaping over the snow with a jug of blood in hand, but I presume it will arrive by the usual modern means. After this arrives, the lab people will mix a bit of my blood with what has come to make sure that there are no incompatibilities. When they are satisfied that the formula is all right, they will call me and I will receive two bags which will take eight hours to seep into my system through my wonderful new port. I will have been dosed with Benadryl and Tylenol in case of allergic reactions to the new blood. Who knew? I honestly thought one would go in, sit down, get the blood and come home happily refreshed and ready to read vampire fictions.
Sanctuary is covered with white fluffy snow and in the grip of uncommon cold. The birds are putting away many pounds of seeds – the cardinals sit in the plum bushes with the bright red males providing a constant visual delight against the grey and white background. Inside, I spend my days in rooms filled with spring and summer because Charles comes from his greenhouse bearing cyclamen and blooming orchids in purples, whites, yellows and various shades in between. He has them in beautiful jardinaires from his collection and it is quite splendid to live in such luxury and comfort.
“Live by faith, my righteous ones” is the phrase that comes forward as so many thoughts about here and now, life and death, and changes for the family move through the mind. And so in faith we go, for that is the gift that has been given to us, this living within God’s providence; when we have had great blessings in the past, we always have hope in the future.
Where does one go when the physical container of one’s spirit becomes less and less functional? In the past week, I went onward with the plan to attempt one more extension of life through the application of Chemotherapy. The port was placed, and last Monday I began the five days of Vidaza. The oncologist told me that there is no way of telling what might happen – this could buy me another month or perhaps even a year. I reiterated that I had been living a miracle for quite some time now, and I will not hesitate to hope for another. The good thing has been the unexpected strength of my blood so far, and therefore the hope is that it may be able to continue.
The actual Vidaza application was easier through the port than it had been via the injections, and the side effects are just beginning to manifest themselves now. If I can survive the next week, I think this may work. Today I feel really sick with an upset stomach, total exhaustion and chest and throat pain. Yesterday’s CBC indicated that I have some toxic granules developing in the white blood cells – a sign of inflammation beginning within the body itself. I was told that the chemo’s attack on cells will reach its nadir by Wednesday, and then the hoped for turn around might begin. To cope, I am using anti-nausea meds and hydrocodone for the pain – my voice is quite hoarse, and my speech is slow so I convey a strong impression of barely creeping onward. . . once again, the old, old woman looks back at me out of the morning mirror.
Meanwhile, Alphie mends, and his limping is almost gone. He is beginning to resume his serious sniffing and chasing activities and the hair over the shaved portion of his hip is almost grown back. He and I watched the Inauguration events from parallel prone positions. I tell him about the great import of this day, and he looks at me intently, conveying deep interest while not understanding a syllable. Hope for better days inside the small space of my physical self springs up and joins the greater hope that permeates this country as the entire nation looks forward toward a new beginning and a better future. This is really a wonderful and blessed day!
Last week was not easy for me. I did the bone marrow biopsy/aspiration (the biopsy part is actually taking marrow out to examine, as well as the blood) on Tuesday, and on Friday I had the port put into place on the right side, under the collarbone. The biopsy results came back with nothing but sorry news in that the blood cells are going ever more awry, and the blasts have advanced so that I am now diagnosed as having “Acute Myeloid Leukemia“. I have 25% blasts in the blood, and now we begin the intravenous chemotherapy. The oncologist called in person, something which has not happened before, and since he has been anything but falsely optimistic, he did give us some hope by saying that my blood has held up remarkably well in spite of the problems, and we will do three rounds of chemotherapy in hopes of stopping the disease again, as we did for a time with the Vidaza injections. Now that I have had a year long break from the therapy, the doctor decided to try again with Vidaza because I had good luck with it in the past, but this time it will be easier because it comes in through the blood stream and is given in five days rather than in seven. This application manner wasn’t available when I began in 2006.
( click image to view more clearly )
The port that I have in place is called the PowerPort with a Groshong catheter; it is new and from the materials sent along, the absolute Mercedes of ports. The implantation was “text book” according to the doctor putting it in, and so far, so good, though the body really doesn’t care for such additions. I can feel the tube under the skin that attaches to the jugular vein in the neck as it comes up and over the collarbone. Today was the first time this new port was used, and first, a saline solution was run through. The nurse said that some people get a salty taste in their mouths when this happens – I did not, though I could feel the solution flowing up into my neck. It didn’t hurt, but it felt strange. Then the blood was drawn for the CBC through the new door into my system, and after it was read, the infusion of chemotherapy began. The CBC showed a sizable drop in the red blood count, something that I knew was happening because I have been experiencing shortness of breath and a pounding heart after walking with Alphie at a very sedate speed with my body reacting as though I have run a marathon. After the infusion, the needle is taped into place, and one carries it all glued to the chest throughout the week. This whole adventure is somewhat lacking in earthly delights, but the alternatives are worse, thus making the former more acceptable.
We have yet to visit with the doctor at length about all the implications of this new life, Part II. We have known that the illness has been increasing for some time now, so it is not a surprise, and we have had ample time to practice living in the “now”, enjoying each day as its hours pass rather than running ahead to wring our hands about the future. I am personally praying for another miracle with the hope of doing a tour of gardens either in England or on the East coast in June. Miracles are very addictive and since I have been living one out for some time now, we have good hopes for the possibilities ahead. Thanks be to God!
“My New Life” began four years ago on January 6, with the diagnosis of MDS and many months of illness, chemotherapy, and repeated signals that I would depart this earth sooner rather than later. Now here I am, having completed what daughter Janna has termed, “The 4th Annual Last Christmas with Grandma”. I shall name this portion of the Blog, “Part Two”.
Yesterday, the twelfth day of Christmas (with twelve drummers drumming) and the day of Epiphany, the beginning of the wonderful season of Light in the Church Year, I had my fifth bone marrow aspiration. Prior to having this procedure, I took two large painkillers and one Atavan tab so that when I got to the office I was already in the personae of a cheerful drunk. My usual self was present and bemused as it watched and listened to this “me” approach the receptionist’s desk and announce loudly and brightly, “I’m all drugged out and ready to go!” I believe the nurse whisked me into the back room more quickly than usual, and I heard her say to Heidi, “She’s pretty mellow; I think we will just get started as soon as possible.” The end result made this procedure the easiest to date, and after having slept off the drug’s effects, I now feel quite reasonable with just a tender hip as a reminder of yesterday’s activities.
Both Heidi and the oncologist had prepared subject matter to distract; he brought forward the movie “August Rush” (a tale of a little orphaned boy whose prodigious musical talent led to the reunification with his parents) and Heidi spoke of the wonder of the science behind yeast spores floating through the air, landing on flour and water and beginning to start sour dough. I was moved by the obvious intent of these two people, and my befogged brain wove the two subjects together into a very strange tale indeed. On Friday of this week I will have a port “seated” in my chest, and on Monday of next week I will start the first course of Chemotherapy delivered intravenously.
So we begin this New Year as we concluded the last – living out miracles and still hoping for more. There is much to pray for when the state of our world and our country is considered, and much to give thanks for when I recall the faces of Charles, children, grandchildren, dear friends and even Alphie. Life goes on and my heart is full.
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