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July 21, 2009 - Day 92

Posted Oct 04 2009 11:12pm
I have talked all these days about the confusion and lack of knowledge concerning AMY that can make it so difficult to deal with.
Well, today is a case in point.
When I was diagnosed in April, my Lambda Light Chain count stood at 430.79 mg/L (5.7 - 26.3 is the normal range), although when you're high, who cares how high you are, you've got it.
One week after the end of Round 1 of the Melphalan, they had dropped to
124.96 mg/L which gave us confidence that the drugs were doing their job and doing it well.
We found out this afternoon that two weeks after the end of Round 2 of the Melphalan, they had shot back up to 343.51 mg/L for an unknown reason.
We had expected to see another drop, but this was not to be.
Typically after Rounds 1 or 2, the counts drop dramatically and then level out at just a few points each time through the remainder of the treatment until they get into that normal range.
Although Dr. Abe has experience with amyloidosis, he is at a loss for a concrete reason as to why the numbers increased like they did.
His best guess is that because the Round 2 blood work was done at the end of the cycle, perhaps the count had increased due to the disease trying to fight back and reestablish it's foothold.
I had new blood work done today (1 week after the end of Round 3), but will have to wait until Tuesday to get the results back.
Hopefully, we will see a decrease in the number again.
This is what can be so maddening and confusing about what is going on.
Just when you think everything is headed on the right course, an ill wind blows and you are lost at sea again, adrift and lost, frantically trying to right the ship.
You were full of optimism and hope, only to be slammed upside the head with the realities of it all.
Time and time again, this has been the course of my story and I am starting to become afraid to peek at the final chapters of the book.
Moments of quiet desperation start to creep up from the recesses of my psyche and they are disconcerting at best.
I begin to wonder if all this has been for naught.
Is it possible that I am not in that lucky 25-30% of successes that I assumed to be my destiny?
If not, how quickly will the future become the present?
I just don't know and neither does anyone else.
They say that hope springs eternal, but what they don't tell you is that reality trumps it every time.
There's no denying the hard facts.
This is not to say that I have lost faith, but it's damn hard to hold on to it sometimes.
Perhaps I am jumping the gun and the new blood work will show that we are back on track, but it's hard to make myself think that way given the odds that I started with and the black numbers I see on the latest test report.
The wait until Tuesday for the new test results is going to be exasperating.
The six days until we see them already seems like an eternity.
This is way too much time to think and contemplate the track I am on.
I didn't think that there was anything that could knock me off the steroid high, but this news did with one crushing blow.
I'll make every effort over the next few days to look on the sunny side, but it seems that those dark clouds on the horizon may be getting closer as each hour ticks by.
I've tried to be as sanguine as possible in my posts, but I am afraid that today's just can't be one.
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