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August 12, 2009 - Day 114

Posted Aug 13 2009 7:49pm
This was Day 2 Round 4 of my Melphalan/Dexamethasone chemo regimen.
I had forgotten about the bone penetrating fatigue that sets in a few hours after the meds are introduced into my bloodstream.
Funny how a few weeks of steroids can erase your memory.
A little bit of edema, shortness of breath, that bloated feeling when I eat and just not being able to get comfortable are the order of the day.
I was scheduled for a "Bag of Mag" on Monday which I blew off and now regret, because the leg cramps have suddenly materialized again.
Not too bad though, it could be alot worse I suppose.
There are many people out there who are dealing with considerably more pain and suffering than I am. I judge myself to be lucky at this point.
We are still waiting on the remainder of my blood test results to come back.
I did find out that my INR results are low, so I guess that Dr. Ravitsky will probably up the dosages of warfarin in order to thin it out some more. Trial and error, that what these treatments are all about.
It is late for my posting but I feel like I need to keep up with it come hell or high water.
The drugs, coupled with the mental and physical fatigue from constantly dealing with being sick, can really play havoc with your attitude and motivations.
It would be way too easy to just lay back and not do a thing, just spending my time feeling sorry for myself.
I can't do that though.
I have the opportunity to help with informing people about AMY and have a need to do that.
I spend a considerable portion of my day answering mail from people who have taken an interest in this story, from caregivers who relate their experiences and other patients who want to commiserate, trade tips and just let me know that they are out there.
We are sort of an underground network that communicates electronically, never face to face, never knowing what we each look like.
It is interesting though that we are able to bare our souls to each other, expressing our anxieties, hopes and sometimes desperation.
I wish that the day would come that we could have a reunion like veterans do when they gather together all of their foxhole buddies over beers and barbecue to swap tales of heroism, bravery and the big one that got away.
Regrettably, I don't think that day will ever be planned.
I think that I am getting a little depressed over this whole episode in my life, but I am working diligently to keep control of it.
Maybe the docs could give me another magic pill to help with it. That would be one med I wouldn't mind adding into my daily diet.
It's getting late and my thoughts seem to be a little disjointed right now, so I am signing this post and am going to try to get some sleep before Day 3 rolls around.
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