Wednesday, July 8, 2009

Four hours in tubes, a conversation with SF and other stories...

So it was quite a day for tests. We picked up our packet of information at 11, went to get my blood drawn and my dressing changed where they still had my old orders from post-transplant (asking them to do peripheral sticks to run obscure anti-viral cultures that I don't need since I have an immune system again). I explained they didn't need to do that and they eventually go it.

Then we ran over to the MRI, where we waited for 30 minutes and then I was slid into the tube for two full hours. My God is that boring. I popped an Ativan in the vain hope it would let me sleep a bit but it's hard do with the endless BEEP BEEP BEEP BLAM BLAM BLAM CLACK CLACK CLACK going on at 10db past the threshold of pain all around your head. I need to do some research on the sonics of magnetic resonance imaging because I can't understand why the BEEP BEEP BEEP needs to happen. CLACK CLACK CLACK I could rationalize as the magnets being spun around on a track, but BEEP BEEP BEEP?

Anyhow, after we got out of there, we ran off to the clinic for my pre-anesthesia consult. I reiterated that if they don't show up with the right kind of drugs, I am outta there. BB's assistant seemed preoccupied so he didn't say much, but I'm ready for bear if the Faith Healer shows up without the Propofol.

Then it was off to the PET scan. I always love these. Locked in a lead chamber, the woman enters with a lead thermos, says "this won't do anything to you" then removes a syringe from the thermos with tongs, injects it into me, flushes it out with water and runs for the hills, closing the lead door behind her. :)

After stewing in radioactive juices for about 40 minutes, it was back to the PET scan. I think I dozed off a bit on this one -- it's not nearly as noisy.

Jill and I went to get some sushi and now we are tired out, ready to hit the hay. The bone marrow work is being done at 8AM and we need to be there by 7, so it's going to be early to bed and early to rise.

I did speak briefly with Dr. SF this evening. Highlights:

* VTD in induction achieves CR in about 70% of patients, which is better than it used to be.

* He doesn't know that fractionated Melphalan is any less strong than regular Melphalan, so that's probably not the root of the issue.

* He isn't sure if, at this point, CR will be achieved with one round of consolidation, one round plus maintenance, two rounds, two rounds plus maintenance, or maintenenace only. Or, in fact, if it isn't going to be achieved at all, which he agrees would be a disappointment given that I don't want to control the disease but rather to get rid of it.

* He agrees that the right questions for BB are the ones I have outlined.

So...there you have it. More news as it becomes available.


  1. Dude, what's BB doing in my town (Ann Arbor)!?!?! We are actually heading to his town on Sunday night for a week long of probing followed by a meeting with BB on Friday. It's been almost a year since diagnosis and three years since my PE that triggered my spiraling health woes. Keep kicking that M-spike's ass.

    Are you still going to be in Little Rock next week?

  2. Good luck tomorrow. We'll be hoping and praying it goes well. Eeeek... they'd better listen to you this time. Keep us posted. Get well rested tonight.

  3. Sending positive vibes and love your way! Hung out with Ziggy Marley the other day and his carefree reggae spirit has affected me a bit! :) Keep on fighting, you will get there. That's what I keep telling myself as I deal with the continued disappointment and frustration with my issues. I try to hold onto the feelings of my good days - it's hard but it gets me through. Hope it works for you too. Best of luck! Much love, Julie Casey