Thursday, June 18, 2015

A frustrating, painful and expensive waste of time

Well, the good news, I suppose, is that with the help of that lidocaine creme and a very skilled nurse my port was accessed this morning.

The long and the short of it is the bone marrow biopsy hurts a lot more than usual, and the FNAs didn't get scheduled.  It's maddening.  It's not like I didn't tell the schedulers for weeks in advance that this needed to happen.  I sent meticulous email after meticulous email.

I had dinner with Dr. Barlogie and his right arm BJ last night and she tried valiantly to move things around last minute but to no avail.  Everything is booked.

The MRI is completely unchanged from before.  No resolution of remaining lesions.  And now, no way to get at what's inside them.

I came out here for absolutely nothing other than a conversation I could have had on the phone with Drs. Barlogie and Morgan (both occurring tomorrow).

It's infuriating, actually.  And the fact that I'm in pain and the damn MRI is unchanged isn't improving my mood any.

It's not a well kept secret at this point but as I didn't want to blog about it until I had been given approval to do so, Dr. Barlogie is indeed moving to Mt. Sinai Medical Center in Manhattan in the next couple of months, where he will join the staff of Dr. Sundar Jagannath, with whom he worked thirty years ago at MD Anderson before Dr. Barlogie left there to start MIRT here at UAMS, with Dr. Jagannath joining him.  I'll post more about this when I'm not so tired, in pain and angry.

6 comments:

  1. Nick, I am so sorry that you did not get the FNA test done. So frustrating. Will you follow Barlogie to Manhattan? That is where Stephen Kramer, columnist for the Myeloma Beacon was treated.I find it so interesting that these specialists move around as they do, but Barlogie was MIRT! Good Luck.

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  2. Yes, it's kind of sad to see him leave Little Rock in this fashion. They should be lauding him with much fanfare and rename MIRT to the "Bart Barlogie Myeloma Institute for Research and Therapy". Maybe someday.

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  3. Wow, Nick. Sounds like an incredibly frustrating trip. I imagine it's providing even more food for thought concerning the decision on staying vs. going. Really interested to hear how the discussions with Barlogie and Morgan went...

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  4. http://www.arkansasonline.com/news/2015/sep/27/gareth-john-morgan-intent-on-cancer-cur/ Hi Nick, wondered if you saw this link re; new guy in Arkansas. I'm sure you've researched him already. Hope you are doing ok.

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