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slipslidingaway

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Member since: Tue Nov 30, 2004, 07:08 PM
Number of posts: 18,766

Journal Archives

What a roller coast ride this has been ...

my husband was diagnosed with MDS RAEB 2 in May 2010, started one of the prescribed drugs (Dacogen) unfortunately that did not slow the progression to acute myeloid leukemia. He then had induction chemo and a bone marrow transplant from his sister (in reality a stem cell transplant, T cell depleted) in October 2010 and has been doing well. No real GVHD, but complications from a reactivation of the Epstein Barr virus and subsequent treatments with Rituximab for EBV Lymphoma have played havoc with his WBC. We're still waiting for certain levels to return to a level where he can begin to receive the childhood vaccinatons, all wiped out with his immune system prior to transplant and then with the Rituximab.

So we wait and continue to watch the counts. Fingers crossed for the blood tests done today at Sloan, hoping they call in the next day or two for some vaccinations next week

We have several new friends from the time we spent at the ACS Hope Lodge in NYC (required for to be close to to the hospital for 100 days post transplant) what a blessing it was to have that available, and we are thankful we had an insurance policy which allowed treatment from one of the premier cancer centers. We met others who did not have such access

With AML and a bone marrow transplant there is not much time to shop around for the "best" transplant center as time is of the essence, we chose to stay closer to home because that is where we began ... and there was not much time to search for "the best." We spoke with the NIH as well, but as the doc at Fred Hutchinson in Seattle said in a phone consultation, Sloan Kettering is not "chopped liver" and the window of time might trump the medical facility and approach. So you go with the flow and are swept with the tide.

We're looking to sell our home, those out of the pocket annual maximums really hurt, stopped any renovations to get ready for the sale as the doc said that was one of the last things a bone marrow transplant could be around. Fortunately we have a family member that stepped up to the plate to help with financial matters, they live in a country with socialized medicine, and they said the most important thing is to focus on getting better, not medical bills. What a novel concept!

A short intro of where we have been and wishing all those on this roller coaster a good outcome. My Mom had cancer and I've had cancer as well, not a roller coaster that we choose, but we are on this ride together.

A Healthy New Year to All, takes on a whole new meaning when you have been there.

Step by step






Posted by slipslidingaway | Tue Jan 3, 2012, 11:28 PM (44 replies)

My DU2 journal link ...

http://journals.democraticunderground.com/slipslidingaway/515

Posted by slipslidingaway | Sun Dec 11, 2011, 04:46 PM (0 replies)

Journal question ...

this is from someone on DU2, but many people seem to be asking about access to the journal information.

"How can DU2 archives be reached in the future?
For those not moving on to the new site, will there be a way to reach the archives of what we had here? I understand they will be accessible, but how?

There's a lot of good research and history here. It would be a shame for it not to be found."


Also will you still be able to search the old DU journals with the link below? If so will that only be for donating members of DU3?

http://journals.democraticunderground.com/

Thanks.


Posted by slipslidingaway | Sun Dec 11, 2011, 03:33 PM (1 replies)

Would it be possible to have a filter that sorts the latest/greatest threads by Time ...

as the left hand side of the GP on DU2 did? They were automatically filtered and it was just one click to see the latest/greatest in a time sequence. I just do not see that functionality with the current filters.

These are only threads that 5 or more DU'ers recommend and are placed in chronological order once they hit 5 recs.

The new filters help, but still find myself looking at the same thread titles over and over again.

Also, will you need a star to use the filters?

Thanks!

This was the left hand side of the old GP ...

Greatest Discussion Threads
Sorted by Time



Posted by slipslidingaway | Sun Dec 11, 2011, 12:48 PM (0 replies)

YES!!!!! Something similar happened over 2 years ago when the unrec feature was introduced ...

and before they changed the number of recs to remain constant on the left side of the GP (well for most forums and most of the time anyway - it is still not consistent on DU2)

Even with being able to filter the latest page by most recommended within a certain amount of time it is not the same, many of the same threads will remain at the top and many threads will be missed. And I do not see this getting any better once the conversion takes place, plus I'll always be fooling with the filters and scanning thread titles I've already seen.

This is what I posted at the time when threads were moving on and off the left side of the GP.

slipslidingaway (1000+ posts) Sat Jul-11-09 01:21 PM
Original message

Bring back the Latest/Greatest Combo with a time sequence

From another thread and I've copied and pasted this a few times in a thread that had 5 recs, but then it is dropped from the GP, it just gets stuck in a loop on the same forum.

Posted this a few times, this is how I used the GP and I would start a new post about it, but it would get rec'ed and unrec'ed and most likely never make it to the left side of the GP, where people from different forums might see it and comment.

Bring back the Latest/Greatest Combo with a time sequence.



I disagree, the left side of the GP was very useful, not so much anymore. Posted this in another thread, although I realize that we all may not use this method, the latest/greatest combo was an efficient tool IMHO.

I do not use the right side of the GP as much as the left side...

which Was a combination of the latest/greatest threads from any forum (that you could rec) placed in chronological order of when they hit the GP.

You could come back the next day or hours later and easily scan through the left side for the latest/greatest of the past several hours and then pick up where you left off from your last visit. If time allowed then you could visit other forums, but this was a quick and efficient use of the left side of the GP...IMHO.

What happens now is a thread might get 5 recs and be placed on the left side of the GP, then someone gives it an unrec, so it drops off the left side, a couple hours later it gets another rec and gets placed back on the left side, BUT it remains where it was placed earlier when it first hit the GP left side.

The right side of the GP does not change nearly as fast so it was not as useful, the left side is pretty much destroyed with threads dropping on and off as people rec and unrec. I can see why they are not placed at the top again as this could happen several times a day, so that would not help the functionality either.

If you look at the current "latest page" there is only about one hour of posts, several of which I would have no interest in reading and I do not want to scan through 12 pages to catch up.

In contrast the left side of the greatest page has the last day or so of threads that at least 5 people thought should get a rec, much easier to look through and also to pick up at a later point as they remained in the same order instead of dropping on and off.

Hope that makes sense, it was the best way to see a combination of the latest/greatest from all forums.

http://webcache.googleusercontent.com/search?q=cacheQ0B6T48SEIJ:www.democraticunderground.com/discuss/duboard.php%3Faz%3Dview_all%26address%3D389x6041515+site:democraticunderground.com+slipslidingaway+%2B+greatest+page+%2B+sorted+by+time&cd=3&hl=en&ct=clnk&gl=us


Posted by slipslidingaway | Fri Dec 9, 2011, 12:27 PM (1 replies)
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