I saw my doctor this afternoon regarding the week 12 results. The news was not good. The patient has to have a 2 point reduction in what they call the Log Value. Mine was only 1.24. In addition my viral load was much the same as at week 6 - it really should be down to zero by now. This means continued treatment will probably be unsuccessful. The doctor said said he would confirm the situation after talking with the liver specialist, "as he's the expert"
Thankfully L was with me when I received this news. I put a brave face on it but as we left the hospital I felt devastated. Something in me had been convinced the time was right for treatment and that it would work.
When I got home I soon received the call. They doctors have decided to do another blood test on the 29th of December to try and discover a more definitive result. This course of action came as a surprise and I do not know if I feel happy or sad about it. Just before the call I was thinking, okay no more horrible drugs lets have a good Christmas maybe even a glass of wine.
Now I fear getting through this stage. I am what is called a slow responder. This may mean remaining on treatment for up to 72 weeks and with a reduced prospects of success. Is it worth it I ask myself.
Inside I had created this future where I would be Hep C free, renewed with energy and ready to get Mr. Reed published and work hard at being an author. Now I am faced with a very different future.
And where does this leave Prometheus? Failier was not in the script. The story can't finish after 12 weeks. He needs to be free of his suffering. As my byline says above this novel idea was meant to be a positive outcome whether treatment succeeded or not. I just never unexpected it being truncated so soon. It just does not feel right. Perhaps the gods are playing with me and there will be a happy outcome after all.
The only good thing
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A few thoughts, some novel - some not
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6 comments:
Hi Richard- cathy here. Sorry to hear about your treatment upheavals. i have a close friend who went through this same dilemma 3 years ago. She didn't have as good a result as was required part way through her treatment either. But the doctors let her continue and thankfully things swung around more favorably before the next tests. By the end of the year things were good and have been fine since. I don't know her levels and they may be different to yours but we now can have the odd wine or two and she is back working full time- with her hep C at bay.
So I sincerely hope that this is your outcome too. Thinking of you and hoping there's a change in your readings for the better.
Be kind to yourself
love Cathy
PS Thanks again for letting Izzy stay and have enjoyed the CD you sent over. Looking forward to seeing the DVD too.
Hey Richard,
I, too, am sorry to hear the results weren't what you had planned on. My advice is to look inward and determine what the right course forward is for you, regardless of what the doctors say (never forget that you're in the driver's seat!). While your prospects for success may not look good when held up to a statistical model, you MUST remember, it is only a model, and flawed, at that. It cannot possibly account for the fact that everybody is going to have a somewhat unique response to treatment. Swing back by my blog: I wasn't undetectable until after the 24th week of treatment... and I cleared the virus with only 48 weeks of treatment.
I hope your Dec. 29th labs provide some sort of encouragement. You're this far into treatment, and it would be unfortunate to have to start over from the beginning. Consider it this way: if you stop now and re-start later, you're in for another 48 weeks. If you continue, you may also be in for another 48 weeks or so, but having already made some progress.
The other important consideration: please talk to your doctors about changing your interferon... as I recall from when I went through treatment, there were several people I talked to in a similar predicament, and switching to "the other" brand of pegylated interferon got them back on track and allowed them to complete treatment. They are slightly different at the molecular level, and could very likely mean the difference between finishing treatment successfully, or having to go back around the loop again sometime later. You might also ask them if adding Telaprevir (vx-950) to your regimen is an option.
I also suggest you frame your thinking differently: this isn't necessarily a question of success or failure, so much as a question of time... sooner or later. Success deferred is still success.
With respect to the novel... this is a setback. This is what happens in the second act. We didn't predict it, and we certainly didn't hope for it, but it's here. Not to take away from what you're feeling personally right now, but maybe you can use this.
Don't despair, my friend. Keep the flame of hope lit. You'll find your way through this.
Best,
Chris
Dear friends thank you so much for your encouragement. I wish I had posted these results earlier now, your kind words could have prevented so much soul searching. I wrote the blog immediately, but sat on it thinking it may be too raw to post without reviewing when calmer. Then I could not bear to look at it for a long while. Still what is done. I will certainly take on all your advice and discuss things with the docs. I have a feeling there will be more to this story...
With gratitude.
Richard
Richard, I've only just seen this. I was so sorry to hear the result but encouraged by the other comments to feel that things may still work out. I don't have any medical advice or knowledge to offer but you are in my thoughts.
Take care. I hope and hope..
Love
Joan xx
Sorry to hear about your results, Richard, and about your cat. As you say, it's only the unfair things that can really make us suffer - If Prometheus deserved everything he got I doubt we'd still be thinking about him. Glad to see the other comments on this post and hope you are staying hopeful.
This and your Prometheus archetype post remind me for some reason of a favourite quote from Nietzsche (who I always find interesting despite his misogyny, madness and misappropriation by numerous causes) - 'One must still have chaos in oneself to be able to give birth to a dancing star.'
I've only just caught this, Rich.
What can I say? Except that this too is part of your journey and you're still on the road with no idea of what's waiting along the way.
You know how we often say in writing that the characters take over and lead us in unexpected directions and we have no choice other than to follow? Maybe that's what's happening to you too here - in the 'story' of your own life as well as in the book.
And that Nietzsche quote is wonderful ...
Sending love and hugs. xxx
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