Memoria

'Pagó̱sei sto chróno'. " Frozen in time". That's the way it happens. We will not know what Josh would have been like at 41 or 45. He is frozen forever in time in our minds and to me he has not aged a day since his illness and his death. When I recall his look of pain, it is unchanging. When I picture his smile it is forever the same. I have often tried to imagine what it would be like to see him age with us, to grow older together, and to share the stories of that journey. Try as I might I cannot. Each time I try, he is forevermore the same. "Frozen in Time", 'Pagó̱sei sto chróno'. In the Greek there are 2 words for time, 'chronos', which would be chronological time, and kairos, which would be "In God's moment" or time.  Chronologically  in my mind Josh is frozen in 'chronos'. In God's time? Who can fathom what he has become?



New International Version (©2011)
But do not forget this one thing, dear friends: With the Lord a day is like a thousand years, and a thousand years are like a day. 2 Peter 3:8

3 Forward, 2 Back

The last time I posted I had said that medicines had been decreased and that the rate of change had been accelerated. Well things have changed again. After decreasing the tacrolimus, I developed some GVHD and so they raised the immune suppressor back up again. There also seems to be some issues with the liver so there is another medicine for that and this past week I developed some phlebitis in my leg, thankfully no blood clot, but there's an antibiotic now for that as well. But then again this disease has never gone in a straight line. I am never surprised, disappointed yes, surprised? No.

It's Kinda Like Normal

Today, July 11, or 7/11,   I had my final infusion of Pentamidine. I have been getting this antimicrobial medication every 3 weeks since my transplant as a preventative for Pneumocytosis pneumonia and each infusion along with premeds and waiting usually took about 2 to 2 1/2 hours. Having been immune suppressed I was a risk for contracting that nasty pneumonia often fatal for people whose immune system is down. Guess what? Not so any longer. It is getting stronger. I have been stepping down on the Tacrolimus, from originally 8 mg daily to 1/2 mg every other day and there has been no Graft vs. Host disease so I'm thinking they will eliminate it all together. Once that goes it means others will follow suit. It's kinda like normal, but not quite. There will be much, about which to poke and prod  for several years yet or at least for my earthly forever. Yes I'll enjoy my 7/11.