Constance Ore is a retired Teacher, Choir Director, and Organist. And a formidable cook.

November 29, 2007

Filed under: — Constance at 1:56 am on Friday, November 30, 2007

Rolling-Dice.jpg
Yesterday’s visit with the oncologist was different from all the others. This time, the information given was that a clone of cells has figured out how to grow around the Vidaza. Vidaza and the other therapies that control my form of MDS work in the same way; the evil protein is pulled away from the undeveloped white cells, thus permitting them to mature and provide immunities. When these cancer cells become resistant, there is not another known approach that can stop their proliferation. The Revlimid would possibly address the issue in a different manner, however, the side effects are very daunting, and we all agreed that the therapy would be a long shot with no guarantees of any success. The doctor said that he brought it up because he wanted us to know of its existence should we wish to try it. He is going to a large conference where blood cancers will be specifically addressed, and he said he would be checking out all information in hopes of finding anything that might work for me.

Jumping-ship.jpgThe plan going forward is to keep checking the blood every two weeks and to treat symptoms as they occur. If and when the red blood counts drop below the acceptable level, there are orders for blood transfusions. My ANC (absolute neutrophil count) is presently at 0.8, and at 0.5 or lower, neutropenia becomes an issue. This can be treated by the Neupogen injections, however, it appears that my stem cells are not replicating themselves either, and in the absence of healthy stem cells, the Neupogen doesn’t have anything to work with in calling forth more white blood cells.

californiaOceanSunset.jpgWritten out like this, the whole condition looks daunting but there are always possibilities in the future. It could be that on this very day, a breakthrough has taken place; I feel quite confident that Christmas and New Year’s will have my physical presence in this house – on my walk this morning I contemplated miracles and I thought, “Why not?” Perhaps there will be many days before me here in this beautiful place, or perhaps not. Every living thing must die and humanity is no exception. All those words and thoughts about God and creation and salvation and grace that have been woven into my life from my earliest remembering shape and inform how I think about what happens after death. My heaven still evokes images of a clear day in southern California under old growth trees and viewing the ocean.

hawkTongue.jpgThis morning when we came back past the pond toward the house, I heard the cry of a red tail hawk sounding quite near, but not as loud as usual. I stopped and looked for the source, and a blue jay was sitting in the cedar doing a fine job of imitating the far larger bird. I have no idea how or why, but it added an interesting footnote to the morning. So it is. . . always, I return to the “now”. Alphie lies here next to me hopeful that I will soon take him out to walk around Sanctuary and Charles just came back from teaching to announce that it is time to check out a Christmas tree and decorations. C’est la vive.

3 Comments

Comment by Sheila

November 30, 2007 @ 8:40 am

Hi Connie, Miracles happen. They are now and will be in the future happening for you. Your doctor’s conferece may bring back new medications to try with new hopes.
Your trip to Chicago sounds so exciting. You must have had a wonderful time and wonderful memories.
I wait for the time when I will feel like beening in public. My counts have got to chance before that happens. And so does my weakness.
Hang in there as you always do. No one gives me as much support with words and from the heart as you do.
Prayers for you. Your Holidays will be the best ever.
I’m always thinking of you. Sheila

Comment by Janna

November 30, 2007 @ 10:30 am

Dear Mom,

At first, we read on the internet that people with your type of MDS have an average expectation of 4 months after diagnosis. (I remember that day of discovery, and talking about it with Heidi on my cell phone. I was parked in my car, eyes leaking, and when we finally hung up I got out of the car, the cell phone tumbled from my pocket and I slammed the car door right on it, smashing it spectacularly. Not completely “accidental”, I suspect.) Well, here we are, 22 months later, and you are walking Alphie and giggling at operas.

Early on I expected the doctors to give us a road-map, telling us how long until we reached each landmark, what it would look like at that place, and when the Exit was. I sympathize with those doctors as I think back at it – imagine seeing all that expectation and knowing: there is no map!

So onward, mapless, we go. And in the meanwhile, a blue-jay sounds like a red tailed hawk? The sun shines bright here today, the leafless trees dance in the breeze like sculptures against the blue sky, my parrot is sitting contentedly with me in the sun, and my mother is miraculously alive and once again buying underwear for my husband for christmas. My heart feels warm and soft, my eyes start to leak, and I say: Thanks Be To God!

Comment by Paul Kasten

November 30, 2007 @ 2:22 pm

Dear Connie:
I have been reading your musings here for almost 2 years with interest and great concern; I have not posted any comments until now.
First of all, let me say that I’m glad you enjoyed “Frau…” at Lyric; Jim and I are supposed to see it on the 16th of December. While I love Strauss, “Frau” has never been something I’ve wanted to experience; it’s nice to know that perhaps all the shouting is about something, after all.
Now, the reason for this posting: I’d like to remind you about the wonderful Holiday gatherings you and Charles hosted almost 30 years ago, in the late 70’s. It was SO incredibly kind of you both to open your home to organ students for events of that sort. Your house was a beautiful world away from the college, and being invited into it tremendously influenced my life…you were responsible for helping me form my own ideas about home; a place that should be filled with art, music, beautiful things and good companions (4-legged, winged, etc, as well as human….)
Please believe me when I say that I will never forget your kindness; I remember those parties every Advent as I prepare for the Holidays. In a way, your Holiday gatherings were a perfect summation of the meaning of Advent: you gave a taste of the way life ought to be to all in attendance. We all pray every Sunday for the coming of the reign of God, and yet we often fail to recognize it (until much later) when it touches our lives. Like Moses, we’re not allowed to see the face of God, but we DO know where God has been.
You are in my thoughts and prayers…….Paul

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