All- I emailed this to Don Schulz who responded to Lisa about the "new normal."Â
Don-
I am responding to your recent acor post to you directly first because some of my responses have not been posting to the list recently.
"
Date:Â Â Â Sat, 20 Oct 2007 13:23:52 -0400
From:Â Â Â Don Schultz <donschultz@INAME.COM>
Subject: Lisa Suhair Majaj and new normal
"You have misinterpreted acceptance of a new normal.
It is not just quitting as you imply. It is
inclusive of accepting side effects of treatments
that extend life. It's accepting TOGETHER that the
PN from Thalidomide isn't going away, and
celebrating that the drug did bring about a long
term response...
I just hope you can differentiate between what can
be changed and what can't. This disease isn't
referred to as incurable for nothing. Simply not
accepting is not that simple."
I think that I understand what both you and Lisa are saying.
When a mm survivor is told by his onc that "we have tried everything. There is nothing more...I'm sorry..." as I was and I then tried a non-conventional therapy and watched mri scans document shrinking lesions, and the past two years of flc assays indicate I am in the "normal range."
How can I then "differentiate between what can be changed and what can't?"
Because I view conventional oncology as being limited in their thinking I don't accept that my chronic blood clot will not resolve, that my chemo brain won't heal, that my nerve damage won't heal, etc.
I am not angry and I don't refer to my mm as the beast. I consider my cancer and my side effects as a difficult puzzle that I am constantly trying to figure out. I may never solve some or all of the puzzle but I will always be trying. I will not accept anything (well, that's not completely true- after years of denial, I finally applied for one of those handicapped mirror hangers).
David
David, I very much appreciate your response to this post (which had me a little upset.) THanks.
A little off topic, I have a comment about the format o posting on topics. and this seemed as good a place as any to make it. I think it would make the website more streamlined if, instead of creating three new topics about this issue, there was just one topic and all the posts were in the same thread. I think it would make the website easier to navigate. Just a thought.
Thanks,
LIsaÂ
Lisa- You're right, it does become a little vexatious when people reply to topics with unrelated thoughts. Unfortunately there's no technology that we can provide that will be able to prevent users from doing this. The only thing we can do is ask people to pay better attention to the text that they're replying to; find topics or create new topics that best match the comments you'd like to post on the site. This is the only suggestion I'm able to make. The only other solution would be for the Galen Foundation to hire forum moderators to sit around and check every post that people make before it actually gets posted. Sorry I can't be of further help. Take care, Robert
Robert and list- hiring forum moderators is not in the budget, sorry, you are stuck with me. DavidÂ
No, I wasn't talking about threads that meander. That's going to happen no matter what and I don't really have a problem with it. I was just thinking that instead of having three forum topics about the new normal, for instance, there could have been ONE forum topic with the title "new normal," and then all the emails could have been consolidated under that one thread. It would just make things more compact.
Lisa- I understand what you're saying. It is very frusterating. Unfortunately there's nothing we can do aside from moderate every topic and comment that people post - Like most forums, the Galen Foundation just doesn't have the resources to do this. It used to be that only Beating Myeloma staff could create new topics, but what we found was that people started posting a surplus of unrelated discussions in the topics because they had no other outlet for posting their thoughts for everyone to read. So we have given people the freedom to create new topics so that they can create a place for their ideas if one doesn't already exist. Unfortunately we can only ask people to try to pay more attention to where they're posting what. Sorry we can't be of further help. Robert
Lisa- I will discuss your comments with Kosada.
"A little off topic, I have a comment about the format o posting on topics. and this seemed as good a place as any to make it. I think it would make the website more streamlined if, instead of creating three new topics about this issue, there was just one topic and all the posts were in the same thread. I think it would make the website easier to navigate. Just a thought."
DavidÂ
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