Science & Medicine

What it was really like

Monday morning rain

This morning, taking my coffee back to bed , propped up reading whatever it was I drifted off to sleep reading last night,  Django comes flying in and perches on my head.  This one-legged blue and gray parakeet says good morning and good night like that and checks in from time to time during the day.

Katrina lying on my belly for warmth —  and to remind me breakfast is a little overdue — stares up at Django with her murderous yellow cat eyes, and blinks.  Jenny sleeps, a white dog on a white sheet her ears twitched back just in case some action is called for.

Morning.  A return to my life I vacated three weeks ago.

And if now I don’t ask myself Why, when shall I ask?  Was it worth it after all?

And would it have been worth it, after all,
After the cups, the marmalade, the tea,
Among the porcelain, among some talk of you and me,
Would it have been worthwhile…
If one, settling a pillow by her head,
Should say, “That is not what I meant at all.
That is not it, at all.”

The advance research for the ASH meeting consisted mostly of going through the abstracts and setting up appointments. That started in October.  Then, since it’s a 500 mile round trip I figured I might as well change my overdue oil filter.  And make arrangements to take care of Jenny, Kat and Django. (Bozo, a severe macaw, relates to only one other person on earth.)

Buying electronic equipment was exhausting, juggling BestBuy and Amazon, testing and returning videocams and replacement computers just as Windows 8 came on the market further mucking up the process.  Learning to use it all, knowing there were meetings ahead and commitments I made to bring video and sound to MPNforum, was a stressful,  often frustrating process.   I made a small video with Bozo on my shoulder to see if I could upload to YouTube and then embed the video on a Post to MPNforum subscribers.

Finally, last week after a drive from hell over switchbacks and roads I trusted lay beneath the carpet of fog , the I-85 took me into Atlanta and ASH and the round of posters and presentations, the press room and the Red Parking Lot alongside the massive structures of the Georgia World Congress Center.  It was fast, it was fun, exhilarating even. It went well. Meeting with Richard Silver at the Omni and recording in his room, sitting in the darkened presentation center next to the radiant Claire Harrison, spending some good time with Bob Rosen and Barbara Van Husen, taking notes, walking, trudging, escalatoring, learning, walking some more.

And all the time  recording on my digital, videocamming, photographing.

At the end, a long drive over the mountains back into the perma-fog that seems to settle above the gorge separating South and North Carolina.

And then the horror.

Now that I had all these photos and recordings, how do I get them out of my camera, videocam and digital into the computer?  And even if I could do that – which seemed pretty unlikely in some instances – how do I sort through all that to tell the story of this conference that would be useful and meaningful to MPNforum readers?   And that leaves aside the whole question of uploading photos and video and MP3 recordings (those last two never before seen in MPNforum) the very week WordPress introduced a new and totally unfamiliar media handling system.

 ASH ended on Monday.  The Special Report was scheduled to be published the next Monday. (That would be today.) That’s when I vacated my life to go through the manuals, experiment with dummy pages, write and rip up copy, download and upload and layout.  There was no way anyone could help at this point. Not even with editing and proof-reading since copy, such as it was, was all in draft stage.

It came together.  Mostly, I ate standing up, played no fiddle or banjo, my clothes got grouty,  Jenny missed a couple of regular walks. Breaking the job into chunks and blending night into day, producing checklists and sketches, miraculously it came together.

This was the MPN story I actually found among the tons of unrelated input from ASH and these are the photos, the slightly edited interview with Richard Silver, and instead of my version of what Mayo Clinic’s  Animesh Pardanani had to say about CYT387…here is his whole talk delivered in MP3 sound.  Amazing.  Links all tested.

After a quick edit and proofread, I readied the Report for advance release to subscribers, password protected, Sunday night, always a time of limbo. I posted the same message on the MPNforum Facebook page.   And asked for feedback and corrections before going public.  Maybe a thousand people got the advance version.

Mary Cotter got back to me quickly, with good comments, pointing out the Silver video was Private. (I uploaded to YouTube as a Private video to send to Dr. Silver for approval.)   I made the correction.  Charlie Nielsen e-mailed me with much appreciated TrackChanged typos on the JAK document. And then I pretty much just crashed, took Jenny and Kat for a walk in the rain and went to sleep.

This morning, after Django left my head, after the shower and second coffee, I turned on my computer and found a few nice comments about the Report.   A few hundred visitors to the Report, no action on Facebook, maybe a dozen or so visitors to the Silver videos.  It’s still early but clearly a report from ASH, even if it affects our health and survival, is not the top of anyone’s Monday morning  list right now.

Not even mine.

I haven’t recovered from Connecticut, from seeing, again, the kind of darkness that can live in a human heart, the evil plotted in a human mind. [ “All my pretty ones? Did you say all? O hell-kite! All?,” says MacDuff.]  I can’t stand listening to the relentless news reports on the radio and rejoice not to have television.   And it’s the holiday season, houses lit up with Christmas lights, shoppers headed for downtown shops and the mall in town.  It’s raining.

ASH in Atlanta happened a long time ago to someone else.  The Report hasn’t yet been publicly published and it’s already yesterday’s news.

So was it worth it after all, will it help anyone at all…or is it just an ego, power project focused on my own interests?

Maybe it’s both.



Comments on: "What it was really like" (8)

  1. As always, you have put out a well written report in record time. I don’t think there are many people who could possibly do that. Thank you so much. The rest of us have to work a little slower to read and grasp the facts. We are so blessed to have you and your willingness to work so hard.

  2. Susan Hill said:

    Zhen— Many, many thanks for your Herculean effort on the behalf of all of us who awaited this valuable report from ASH. It is inspiring and hopeful that there is finally so much drug-company and medical community interest and investment (financial and otherwise) in MPNs and their treatment and eventual cure. As an eleven-year MF survivor, now thriving on Jakafi, I am pleased to see the interest in the well-being of us as patients and survivors. Thank you for sharing this experience with us. Susan Hill Meridian, Idaho

  3. Wow, I am looking forward to reading all of this….I’ve been on the road and out of touch a lot and am looking forward to some downtime when I can get into all the details…

  4. Richard T. Silver, MD said:

    Zhen: Very nice report. Very good seeing you!! Happy holidays. Dick

  5. Nancy Meyers said:

    You’re awesome! Thank you, after Christmas reading list.

  6. You did one heck of a job for all of us as most of us would not be able to comprehend everything. Thank you Zhen for attending and the information that you are planning to provide us with – cheers to you!

  7. Barbara Kurtz said:

    I got worn out just now reading your account of preparations, driving, meeting and returning home with a pile of information in “new age” technology formats. Your journey was nothing but heroic. It will take me as long to read and absorb your report. And I look forward to it. I fear your desire for instant feedback may be disappointing, but your journey wasn’t for naught. Thanks Zhen.

  8. BonniecEvans said:

    It is a bit of both Zhen but your report was one to be enjoyed, to learn and appreciate. I would have not expected you to make such a long journey and attend all those meetings at ASH. My brain would not been able to absorb it all.

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