Diana, thank you for your welcome. You are a wonderful warm soul.
At the outset perhaps it puts things in perspective to realize that the
Hubble telescope has just discovered a sun 93 million miles in diameter. Or
is it circumference? On the large side, anyway.
The big news for me is that here I am, in my own corner of the world, tired
almost beyond belief. My five days consolidation ended with the news that I
am back where I must have been a year before I was diagnosed with leukemia.
At the end of the five weeks induction, my hematologist expressed great
satisfaction with my apparently clean marrow, but now he has found that
"clones" were hiding in it, and they are emerging in a condition known as
myelodysplasia. I am both post-leukemia and pre-leukemia!
I have to see him tomorrow at noon. He will take a blood test and decide if I
should immediately proceed to hospital for an outpatient platelet
transfusion. He will show me how to inject myself with neupogen
"subcutaneously daily for 10 days". He had expected that during consolidation
my white-cell count would drop, and indeed it did: to 700. No wonder I am
tired. Incidentally, the vials of neupogen cost $150 each. That 10 days will
cost $1500. The doctor wants to continue the consolidation. There is a one in
four chance it will be successful. Each consolidation will be followed by
this neupogen treatment, I gather, so there alone you have $6000. Pardon the
emphasis on money, but it does seem extraordinary.
That's enough of the agonizing side of all this. There is more, but I am
alive and my little roof garden is within view and my friend is bringing me
some supplies.
I have to face it. Things could be a lot better. Suddenly life is not within
my control. And I am an independent person. I have to find a way to be in
charge. I shall go back to doing research on alternate therapies (this chemo
stuff is out and out warfare). But I have no great hopes in this regard.
There are times in life, it seems, when independence takes a back seat and
you have to rely on the kindness (and knowledge) of strangers. Oh for a magic
bullet!
Of course positive thinking is essential, and I am doing my best. But right
now, just one day after getting home, sleep seems more important than
anything else -- to gain strength, to escape into dreams, to assume a natal
position.
And then there is my friend. So confident in me. Together we will do it.
Here I am at the center of New York, just a few blocks from Central Park,
where I would love to be walking. One of my favorite strolls is to Lincoln
Center, to sit and hear the fountain. My doctor says I should stay away from
theaters (as though I'm in the mood for a Broadway play!) and restaurants
(now I am in the mood for a good restaurant meal) for the time being. I can
drink one glass of wine with dinner, and I can do some mild shopping. My
friend wants none of the latter. He says I should basically stay home, and
with a count of of 700 (for now) I think he is right.
My thoughts are with all of you who are similarly grappling with the unknown.
You show such courage, you who are in its grips and you who help and support.
-- Ron
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