Thursday, April 22, 2010

A slight detour.

So, a few weeks ago I started drafting this months update and it was actually going well. Then Sarah and I took a week to entertain some guests from the Midwest and set things aside for a bit. As most of you know, I celebrated my 39th birthday and Sarah and I celebrated our 19th anniversary. (If you didn’t know, that was not a vain attempt at fishing for late responders. It’s ok, really)

First we had Becky (my sister), her son Seth and Jeff her boyfriend here for a few days and as they were on the plane flying home the Kauffman’s arrived and we entertained them for several days too. Fun was had by all. Afterward I went in for my next scheduled transfusion last Thursday and my count (hemoglobin) was 4.6 and that is the lowest it has ever been. The nurse who does my transfusions called the doctor and they scheduled an appointment for this past Monday and another transfusion for Tuesday. She (Dr. Kao) is of the opinion that the disease is progressing and the drugs (Danazol) are no longer working effectively. The spleen, which has been bothering me more and more, should NOT be taken out as the operation would prove too risky and is not in her opinion warranted at this time. Things are starting to look a little grim from my perspective…

Look, things were just starting to settle down and I was relaxing into a comfortable pace and quality of life out here and then this news hits me. As you may imagine, I have been somewhat of a wreck the past few days. Seems as if most, if not all of the progress I had made has all been for naught. I’m growing tired of this game and I don’t want to play anymore…

I’m sorry if any of this brings you down and I wish with all my heart that I had better news to share, something witty to say, or meaningful wisdom to impart… but I don’t. All my brain power is used just to get out of bed lately and there are times when even that is not enough. I am sure, given time that things will improve but for now, this is the best I can muster.


  1. We had the most wonderful time with you. The memories we made and the memories we shared were wonderful. I am very sorry that it has cost you so dearly. You are in my prayers.
    Love ya Kid,

  2. I don't think that it was so much that all the exertion cost me so much as I should have known to ask for an extra unit beforehand... Don't blame yourselves for this setback, I should ave known better.

    And besides, if all that exertion WAS the cause, it was worth it and I would have done it without you guys in the not so distant future. Out in the woods, amongst Mother Nature is where I am most at ease, where I truly belong and I could only have stayed here in the burbs for so long anyway. And to see your smiles and looks of amazement was reward enough for all my toil.