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

January 28, 2009

Filed under: — Constance at 4:28 pm on Wednesday, January 28, 2009

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.


Comment by irene Beethe

January 28, 2009 @ 7:56 pm

Dear Connie,

How wonderful to have the beauty of spring and summer in this wintry time. What a special gift Charles shares with you and you with us!

Once again, you are at the point when hope helps motivate you on to whatever the future holds. (And we know who holds the future, our loving, heavenly Father.!)

With love and hugs from Michigan,

Comment by Becky Pfabe

January 28, 2009 @ 10:51 pm

Dear Connie, Oh, how I have memories of watering your orchids when you were on vacation! They’d have to be carried to the bathtub, watered, left to drain for a bit, and put back in their place. And I will always think of you when I give blood every 8 weeks! Enjoy the energy you should get after 2 units.

Comment by Jerry Pfabe

January 31, 2009 @ 1:25 pm

Connie, I hope the transfusions will help you. You continue to face your illness with incredible spirit, courage, eloquence, and amazing humor. You are a remarkable model for all of us. May you have good days ahead.


Comment by Phyllis

January 31, 2009 @ 1:54 pm

Hi Connie,

I stumbled across your website and just have to write to tell you not to give up hope.

My Dad was diagnosed with AML last March with 83% blasts in his bone marrow. He entered into a clinical trail at the University Hospital of Maryland in Baltimore using the drugs Decitibine and Vorinostat. Just last week, we received the news that his bone marrow test, after the 8th treatment, shows he is in complete remission. He is 78, soon to be a very happy 79 years old this spring.

This trial is being conducted around the country, I believe in 8 different hospitals, if you are interested in researching it. Merck Pharmaceuticals has limited the number of people involved but that would not stop me from contacting them and trying to get in. The other two people that I am aware of, in the same trial, have also gone into remission. One after only two treatments.

If you have any questions, please email me and I’ll be happy to discuss our story with you.

Many blessing to you and yours,

Comment by dick gale

February 2, 2009 @ 1:47 pm

Hi Connie and all —

Monday Morning Concert Report: Flute & Guitar in Laguna Canyon

Yesterday we attended a very pleasant Sunday afternoon concert at the Laguna College of Art and Design, a facility about a mile inland from the town of Laguna Beach, in Laguna Canyon, now with green rocky slopes because of (minimal, I’m afraid) recent rains. We got to hear two Paganini pieces, a solo flute piece by Telemann, a solo guitar adaptation of a well-known Schubert piece, and an interesting Polenc piece. The room is actually an almost windowless flat floor classroom, holding (very full) about 125 people. Two doors at the back remained open (there are no exit signs) during the concert, and one could see the bright afternoon sun reflected against the white doors and feel the cool ocean air coming through the room. A row of stools along the back wall provided upper tier seating. Magical!!

You were thought of during the concert, and many other times as well. We imagine that your current round of medical stuff is very difficult and complex, and our thoughts and prayers are with you and those around you(both 4 footed and 2 footed).

It’s only about six weeks to the Spring Equinox, and hopefully some signs of spring will appear soon where you are (outside of Charles’ greenhouse, that is:
inside the greenhouse, it may be that it is always
summer (maybe around the Summer Solstice!).

take care,

dick and susan gale

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