Thursday, February 4, 2016

Continued sCR...and the coolest thing Donald Trump ever said!

Well, I was wrong about the number of miscues here. It was a little chaotic, in part because I don't yet know the ropes myself in terms of who speaks to whom and how things work, but in general, things went well due to a combination of my usual lovable whining and Bonnie's hard work.

The port was accessed and all labs were done from it. I had to get them to leave it in -- normally they don't discharge people with the port accessed. But the first time, I was successful. I got my EKG and chest X-ray done. They tried to tell me I had a PET scheduled at 1PM...which was not possible because I had a meeting I had to attend, so no dice there.

I returned for my MRI at 6:15 in the evening...and this took a long while. I waited over an hour before I got put in the tube, and they did MRIs of my hips and spine which took nearly 90 minutes between them. These scans are MUCH quicker in Little Rock for whatever reason. But they had some headphones so I could at least listen to the radio for some of it. It was a little challenging because I had some discomfort in my lower back, but I managed.

I went back the next day for bone marrow, and they weren't able to use my port for the propofol for whatever reason (it was very professionally done, this whole thing, but it was much quicker than Little Rock -- I was surrounded by about five people from the moment I got my gown on and there was no dead time between walking out of the changing room until I was about to get knocked out. They started a regular IV, I got knocked out and woke up with a doctor saying I was right to get sedated because "you have the hardest bone I've ever encountered and I had to push incredibly hard to punch through." Sounds like the type of thing I'd like to not be awake for.

Yesterday was spent working, although they tried to get me in for a PET (by this I mean they called me and informed me I had missed an appointment...but nobody bothered to tell me I had one and I couldn't have made it anyway).

Today, I saw Barlogie. MRD results are not in yet, but I am immunofixation negative, light chains are good, bone marrow is clean, etc. Interesting, the MRI shows a lot of crummy stuff going on with my back (mostly a result of aging plus the crushed vertebrae, so I have compression fractures and stenosis, etc.) but the MRI did NOT show any former lesions. I suspect they simply missed them, so Bart asked the tech to review it again. If they are gone...then I am in what Bart would call "MRI complete remission." Which is the closest thing to definitely being cured that there is. Bart also used to call this "Arkansas Complete Remission" and I noted that he'll have to change that -- we decided on "Barlogie Complete Remission."

Speaking of Arkansas, I'll now probably send them the materials we've collected and if the MRI is clear, I will do a phone consult only. If the MRI is not clear, I will go there and get the PET and FNA, if possible.

And also speaking of Arkansas, how cool is this? Even if you can't stand The Donald, watch the first couple of minutes of this speech he just gave this week to 12,000 people in Little Rock.


10 comments:

  1. Thanks for sharing this update, Nick. It must be somewhat odd finding yourself in a new MM treatment environment, but I'll bet that it was good to see BB. Praying that you get that Barlogie MRI Clear pronouncement. My myeloma addled bones would dance a jig (a short one, anyway!)with that piece of good news. Be well!

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  2. Great news Nick! I also left New York pleased with how things went. I tried to go in with an open mind and definitely hit a few kinks with scheduling and logistics, but in the end it all worked out pretty well considering this was November and it was a brave new world for everyone. :) I ended up doing the BMB with only Ativan as a premed (seems they typically don't offer them...yow!) and was surprised when Dr. J came in and performed the procedure himself! Definitely a different feel there, but everyone was super nice and helpful.

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  3. Please keep fighting and healing. The world needs your art.

    -Fan

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  4. Good Morning,
    Constant reader of your blog and fellow Myeloma traveler through UAMS. Just wondering how things are out there in LA?

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  5. Mr. Van Dyk, I landed here as a longtime fan of your music. I am grateful to find your blog and am damn happy to read this blog post. Here's to your future sir! I just wanted to say thanks for writing he songs: "Man Of Glass", "Black and White World", "Still Breathing", and "That Golden Light"! I am with you in spirit through this battle!

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  8. It's been awhile since you posted, Nick. Are you still doing ok?

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