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Taking the blog to the next level...opinions wanted!

Posted Oct 05 2009 10:03pm
Boy do I hate that overused phrased. Not "opinions wanted" or course but the ridiculous "taking it to the next level" which is so overused and yet apropos here so I find myself forced to use it.

I have come to adore all of you, my friends and family and acquaintances and fellow MM sufferers / warriors / wanderers depending on your disposition and preference. :) And I love the little community that we have here.

At the same time, I have come to realize from a variety of sources that my experiences in going through diagnosis and treatment, and my honesty in recounting it without regard to my dignity (though thankfully there's been a little less of those awful experiences lately!) and my particular attitude towards fighting the disease, plus the time that I had to research my options and learn about the disease, all contribute to making this blog something that can be very helpful to newly diagnosed patients, as well as patients going through the treatments, and their caregivers.

Wow, what a tortuously long sentence.

I found some of the books I bought on Myeloma left a little to be desired when I was diagnosed, and if nothing else, my voice is certainly different from the books I read on the subject. I wrote in here a couple of times during treatment that one book I read said that "life will never be the same" and "you will measure your birthday from the date of your transplant" etc. etc. and how this seems incredibly defeatist to me. I am not trying to take anything away from the experience of that person -- everyone's disease and everyone's approach to it is different -- but I would have been helped, I think, by a different voice. And I hope that my blog can contribute to such a voice.

So my question for you fine folks is about format. Here's what I was thinking:

* I think the honesty of my blog is of paramount importance. There are times, for example, when I was on dilaudid and my thoughts were probably incomprehensible and filled with spelling mistakes. I don't want to edit these out.

* I think the gradual reveal and increase in knowledge in the blog is important. There are times when I didn't know as much and the comments or questions I posted here reflected some of that lack of knowledge -- whether it be misspelling (or misremembering) one of my medications, or not understanding some aspect of the disease or treatment. I don't want to edit these out.

The solution, I think, is to have each blog entry, and then beneath that an italicized update / errata correction / other notes to put the entry into a more full context as needed. I'd like your thoughts on this, hence the poll on the page.

Secondarily, your comments and positive urging along the way are a critical piece of this blog. When the time comes, if it does come to being published, I'll ask you individually (to the extent I am able to reach you) if it's okay to include your comments. I will almost certainly exclude names from them, however. For a preliminary indication of your thoughts on this, another poll is featured.

Thirdly, I have used initials for all medical personnel throughout, and I wanted to preserve anonymity in case I had something less than flattering to say about one or more of them. There is one doctor who I had a bad consult with, for example. And another whose opinions I think are dangerous. And these opinions might not be something I want to publish. On the other hand, the majority of doctors are fantastic, and anybody with Google and a modicum of interest has certainly already determined who BB is. Moreover, I believe many of the doctors herein saved my life, and I want to call them out by name (certainly BB, and several others).

So I'd also like your thoughts on how I might effectively use the full names where appropriate.

Thanks very much for your thoughts on these burnings issues!!! :)

P.S. Mandatory clinical update: 20mg of dex was enough to keep me up until 3AM. Next time I must take Ambien on "dex days." I will also be adding two supplements for general health and to ensure no neuropathy from the Velcade -- the Alpha Lipoic Acid in the morning, and the MetNx at night (as the latter can cause drowsiness). I might try to get some Vitamin D in there at some point although I don't want to boost the immune system too much since the goal of all these meds is to keep it somewhat suppressed.
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