Friday, May 27, 2016

Game On Mylo!

Today, my head is spinning with the bad news from our Wednesday visit with Dr. Kadia and our  medical team at MD Anderson who pretty much let us know my illness is no longer in remission. The experimental drug I had been taking for almost 20 months has either stopped working or my disease is getting around it and finding its way back. In any event, Dr. Kadia told me to stop taking this "Miracle Drug" that has been my life line for so long. He wants to get my system clear of any chemotherapy so the next "something" can be done.

He didn't call it "something", they never use such terms. But that is how I heard him. Another approach or therapy is needed. The one thing I heard clearly was another consideration of my having a bone marrow (stem cell) transplant. He has consulted with Dr. Jones, our MDA Stem Cell Transplant Doctor, who had evaluated me almost two years ago. Back then I barely qualified to have that procedure once a suitable donor match was found.  Because of delays we were fortunate to get into the current drug experiment that bought me a good 18 to 20 months of remission. However, the transplant route may be now necessary if I am to have any reasonable quality of life in the immediate future. We will meet with that team right after my next appointment with Dr. Kadia on Friday, June 3. If I qualify again and my health is able to handle the very difficult preparation, procedure and recovery we may be going that route. I think the donor match from two years ago will need to be verified again or a new donor will be sought. We'll see.

So for now a new milestone has been reached even though it is not where we want to be. I had my first blood (Red Cells) transfusion on Wednesday since October 9th of 2014, an almost unheard of achievement. Yet bittersweet since being independent of that need was a badge of honor for me. However, my anemia and fatigue was getting me down so I needed that pick-me-up. Also, transfusions as unpleasant as these are, buy me time.

The way I understand it my disease, that was never cured, still remained trying to find a way around the “miracle drug” and it is now doing its "nasty" again in my system.  Keith Tonkel, one of our favorite partners in cancer and a great minister and blogger, calls his cancer by a cute name "lil bugger" so I too will call it, her or him by this name, "Mylo". He is our foe and his cunningness is without compare. He is the devil of my blood and he will not prevail. My disease is not some nameless ailment. We know him, know his dirty tricks and deviously evil attempts to make me sick. Game on, Mylo!

We got a first bloom yesterday on a mystery plant at our new house. We wondered what this plant was before it bloomed. Just thought it an ugly grassy, plant. Now I think it may be a Day Lilly. Anyway, it was a pleasant, beautiful surprise. New flowering growth. An omen of good things to come, hopefully.

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