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

January 12, 2008

Filed under: — Constance at 1:44 pm on Tuesday, January 13, 2009

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!


Comment by irene Beethe

January 13, 2009 @ 8:30 pm

Dear Connie,

Your spirit of hope continues to be the undercurrent of all that you write, even with the difficulties of the past week. It is your spirit that encourages those of us in less serious circumstances to enjoy each day with gusto, to live as children of our Heavenly Father, one who loves us more than we can imagine!

Thank you for allowing us to travel with you on this journey, wishing we could somehow lighten the load from far away! That being said, we continue to pray for you and Charles and for the miracles that God can certainly work!

Peace, joy, and love to you both,

Comment by Becky Pfabe

January 13, 2009 @ 9:02 pm

Connie, I do hope that this week is better than last week, and I, too, will pray for continued miracles!
Love, Becky

Comment by Tom Ramsey

January 14, 2009 @ 9:44 am

Connie…your blog constantly and continually screams “LIFE” in the face of death. Thank you, thank you, thank you. God’s blessings…Jesus loves you…and so do I!…Tom

Comment by Susan Pfabe-Wiggans

January 14, 2009 @ 2:18 pm

You have been defying odds for a while, so keep it up!! Your spirit is quite amazing. I vote for more miracles, too!!
Many prayers continue to come your way.

Comment by dick gale

January 16, 2009 @ 11:00 am

Hi Connie and all

Connie, I certainly wish there was a way to pipe some of the winter warm Southern CA sunshine into your system (via your fancy “Mercedes” set-up). The low winter light and the dry 80 degree temps are special (as long as the winds don’t fan fires!).

You maintain your strong presence in our thoughts and prayers. And your nature description writing is a pleasure to read.

I continue to struggle w/ Bartok and am also learning a (basic, probably) piano version of the Barber Adagio for Strings. This next week, cellist Lynn Harrell will be at the Laguna Beach Music Festival (15 minutes away), and we’ll go w/ Susan’s mom to a Sunday concert. There will also be some open rehearsals and master classes that we hope to attend.

Fow now, know that warm, dry, positive thoughts continue to be sent your way.

dick and susan gale, laguna woods, ca

Comment by Charlyne Berens

January 19, 2009 @ 8:56 pm

We, too, pray for more miracles and for peace and comfort — both physical and spiritual — as the miracles develop. May your days be full of blessings!

Comment by Ken Jordan

January 26, 2009 @ 12:16 am

You are inspiring. I don’t know if that was your original intent, or if it is merely a by-product of this process. But you have no idea how many lives you touch through this ordeal. Friends and strangers from all over are reading and sharing, learning and praying.

If that helps you to be inspired to continue fighting, then be so inspired and fight on, Mrs. Ore, fight on.

Comment by Monique Teeden

August 30, 2010 @ 10:41 pm

I thought I’d say thank you, and that I was very curious to how a port looked. You are very strong and have given me more strength with my battle! I have been diagnosed with ALL and I get my port and bone marrow biopsy done today, but I figure if I can take a kidney biopsy and spinal tap from being diagnosed with Lupus two years ago, this is merely round two. haha.

Take care!
– monique

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