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Peginterferon-Ribavirin, Failed it twice. Incivek, Failed it. Sovaldi Olysio, failed it. Harvoni, failed it... Transplant Patient Zepatier and Sovaldi...we'll find out!

Thursday, October 23, 2014

B Frank

For the past month, I haven't really posted much of anything.

I've been absent. I do not merely mean online.

Learning from failure, isn't about bouncing back and immediately getting back on the horse. It's about taking a deep breath, a look around, and occasionally a look forward.

After my release from the hospital last month, I have routine blood work done each week to watch my bilirubin. My new yellow skin and eyes have presented me with new difficulties, not only socially but also in regards to my next treatment.
The trouble with a high bilirubin count is the correlation with my high INR, (a low INR indicates a clotting risk, whereas a high INR indicates a bleeding risk) once my bilirubin and INR stabilize, I should be ready for treatment.

In the meantime, I've been reorganizing my life in every way I can: my home, my routine, my goals, everything.
It's depressing, it's rewarding, and it's physically taxing. But to ignore my sadness would be to ignore a part of my humanity, I must look upon my efforts and remember that sometimes "a speckled axe is best." The idea that within the realm of struggle, our humanity is sometimes derived not from our success or failure but rather from a perspective of acceptance that perfection is not always worth the effort. And that to truly understand one another, we must from time to time produce a speckled axe.

I cannot focus on what could have gone wrong, but rather, enjoy what I did gain from my treatment. I saw my friends and family rally behind me like never before. I joined more online communities, and sought to carve the word "Advocate" beside my name.  I zeroed out for the first time during treatment.
So with timid steps I walk closer to a new treatment, carefully keeping an eye on my slowly fading yellow skin.

In the spirit of the upcoming Halloween I leave you with the words of the pumpkin king:
        Why does nothing ever turn out like it should?
        Well, what the heck! I went and did my best!
        And, by God, I really tasted something swell!

        And for a moment, why, I even touched the sky!
        And at least I left some stories they can tell, I did!


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