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Jay Lake
Date: 2013-11-15 06:39
Subject: [cancer] Field notes from Cancerland, Maryland edition redux
Security: Public
Tags:cancer, family, health, personal, portland, radiantlisa, travel

My oncologist has advised me to discontinue my Regorafenib, at least for now. She's hoping to get me into a Phase 1 trial at my treating hospital in the near future. Plus my science advisory board is seeking other options. In any possible case, I need to be at least four weeks clear of my last cancer medication, what's called a "washout" period. I may restart it soon if the trials process looks to be taking longer than hoped. So maybe I'll see some temporary improvement in my side effects at least. Another step closer to end, though, given that this drug is what's been keeping me alive.

Phase 1 Trails

As mentioned above, there is a Phase 1 trial for which I may qualify going on at my treating hospital. There's an order in for a genetic test on my tumor tissue to see if I have either of the mutations indicated for eligibility. Thankfully we have tissue stored in the pathology department's freezers, so this does not require a biopsy. Depending on what my science advisory board comes up with, there may be other tests in my near future.

Happy Side Effects Time

This is my off week with Regorafenib anyway, so I've been looping back through the usual array of GI twists and turns. Plus we're trying to taper me off my sleep drugs as I taper off the Regorafenib. I've been a little more focused this week than usual, which is nice.

Burning Spoons

Unfortunately, I've needed that additional focus. We had a disastrous day with CarMax yesterday, trying to sell Lisa Costello's father's car. We have a meeting this morning with a CarMax manager which may resolve the problem, but meantime we burned about five hours of both her and my time and attention yesterday on what should have been a reasonably simple process. And we have to burn more time and attention today. (Once I have final resolution, however it turns out, I'll explain what happened.)

Heading Home

We're flying back to Portland Sunday. Given my health, I suspect this will be the last non-medical long distance trip I make in my life, though I may try to squeeze in one more trip to Omaha to visit friends there. It will be good to be home, but every step I take just lately is more freighted than ever.

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Oz Whiston writing as Oz Drummond
User: birdhousefrog
Date: 2013-11-15 11:44 (UTC)
Subject: (no subject)
Six months out from Rio now. And you're still able to travel, even if this does turn out to be your last one. Maybe. You didn't think you'd get to Worldcon.

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Gary Emenitove
User: garyomaha
Date: 2013-11-15 15:12 (UTC)
Subject: (no subject)
>>I may try to squeeze in one more trip to Omaha<<

You're not supposed to make me cry on a Friday morning. (On the other hand, another friend suggested that I need a good cry to purge myself of this blasted cold.)
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Jay Lake: jay-sad_devil
User: jaylake
Date: 2013-11-15 17:36 (UTC)
Subject: (no subject)
I can't really say I'm sorry... :\
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User: martianmooncrab
Date: 2013-11-15 20:31 (UTC)
Subject: (no subject)
good luck with it all...

and they are putting in a CarMax down on 224 where the old Kmart used to be. So you experiances will be very informative.
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User: mmegaera
Date: 2013-11-15 21:59 (UTC)
Subject: (no subject)
Still hoping for a trial/m/i/r/a/c/l/e here...
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