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July 14, 2009 - Day 85

Posted Aug 07 2009 12:18pm
Day two of the melphalan and so far, so good with the chemo.
However, the dreaded edema has jumped to the forefront.
This is a side effect of the steroids that we have known about since the ancient days of the Boston trip in April.
The fluid retention is problematic because my legs are swollen like tree trunks, putting strain on the heart and the lungs don't work very well when they are fluid soaked.
I have doubled the dosage of furosemide per Dr. Schwarzberg, so we'll give it a couple of days and see if this solves the problem.
If it doesn't, there are other diuretics to try.
Everyone reacts differently to the various drugs available, so it really is a hit or miss proposition until you can determine what works with your particular physiology.
We changed the dexamethasone dosing, in the hopes of a gradual climb and softer landing, but I don't see any difference. There was no sleep last night. This appears to be how it is going to work for the duration of my treatment period, so we are finally establishing some baselines to anticipate an outcome for each cycle as we start it.
I went back through several of my early posts today and was interested to see what has come to pass just as expected, what we were way off base on, what we were realistic about and we had our head in the clouds about.
I saw once again, the highs and lows that have defined this journey so far and quite frankly, they disturb me to no end.
This fight with that damned AMY has become all consuming, affecting every moment of everyday.
It instills a fear, whether based on fact or not, I can't say for sure, but it is there.
It hangs over us like a dark cloud, only opening for the sun once in awhile.
I am reminded of the lyrics to CreedenceClearwater Revival's Bad Moon Rising:
I see the bad moon arising.
I see trouble on the way.
I see earthquakes and lightning.
I see bad times today.
Don't go around tonight,Well, it's bound to take your life,There's a bad moon on the rise.
I hear hurricanes ablowing.
I know the end is coming soon.
I fear rivers over flowing.
I hear the voice of rage and ruin.
Hope you got your things together.
Hope you are quite prepared to die.
Looks like we're in for nasty weather.
I guess that this is a pretty negative attitude to take, but it is how I feel right now.
I just don't see any good coming out of this trip. It is one that I wish we had never had to take.
Pity party, woe is me, call it what you like, it is the reality of the situation.
Maybe I'll be one of that 25-30% that gets a remission from this treatment protocol, but my story parallels too many others that I have read about that came to less than satisfactory conclusions.
I was lucky enough to be one of the few thousand people that develop this disease each year, so why not?
Perhaps it a fear of dying that drives it. I find dying a rather hard concept to fathom, especially when you have the time to contemplate it.
You start to ask yourself alot of questions about how you have lived your life, how people will remember you before you are forgotten as they get on with their lives, as well they should.
You remember all of those life changing decisions that you made along the way and wonder how your life would have been had you not opted for them.
You feel regret over the wasted time along the way, time you could have used to love and be loved.
In the end, isn't that all that really matters?
All the crap we have surrounded ourselves with can't save you, so what was it all for?
Why did we fall into the trap in the first place?
How could it have been different?
Why are we so blind to what is good and true and what is just plain old bullshit?
These are the questions that we should have been asking all along.
Please take this to heart and try to figure what is really important to you before it is too late.
Make the decision to strive for what really matters, not what you have been told would make you happy, peaceful and content.
Well, that's enough negativity for one post. Actually, it is probably enough for a dozen of them.
Tomorrow's a new day, we'll see what it brings, a bad moon risin' or bright sunshine.
I really am hoping for the sunshine.
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