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Wednesday, March 23, 2011

You can't hide from yourself, not at all

Blogging tunes: Howard Stern 3/22/2010

No, that's not a typo, I'm exactly one year and one day behind on Stern.  Believe me, I know what day it is... it's 3/23/11 - Orion's first birthday.  Happy Birthday, little O-man.  Wish I could be with you:

Orion in the lobby at our hotel in Plymouth Meeting, PA (3/20/2011)

Actually, I just changed the audio from Stern to the Phils/Rays pre-season game.  I downloaded the MLB At-Bat iPad app (thanks, Loftie - I still got some store credit!) and the video of this game is supposed to be available, but of course, the network here is too slow.  I guess I'll be listening to a lot of baseball here.  I just don't know what I'm going to do about Flyers playoffs.  I don't think there's an audio-only option for NHL is there?

Anyway, this post isn't more bellyachin' about network issues, it's about the schedule of events over the next week or so here at UCSF.  Today is day -7, meaning we're 7 days away from the actual stem-cell transplant.  The schedule I was given shows from day -8 (admission) to day +11 -- that's roughly 3 weeks.  I was told I'd be in here for closer to 4 weeks, so I'm not sure what happens on day +12 onward.



Date   Day    Treatment                           Supportive Care
3/22    -8    Admit/line placement
3/23    -7    Busulfan 0.8mg/kg IV x 3
              (Busulfan levels drawn after first dose)
              Fludarabine 30mg/m^2
3/24    -6    Busulfan 0.8mg/kg IV x 4
              (Busulfan adjustment if needed)
              Fludarabine 30mg/m^2
3/25    -5    Busulfan 0.8mg/kg IV x 4
              Fludarabine 30mg/m^2
3/26    -4    Busulfan 0.8mg/kg IV x 4
              Fludarabine 30mg/m^2
3/27    -3    Busulfan 0.8mg/kg IV x 1
              Fludarabine 30mg/m^2
3/28    -2    Donor collect #1                     Tac 0.007 mg/kg IV
3/29    -1    Donor possible collect #2
3/30     0    Peripheral Stem Cell Infusion
3/31    +1                                         MTX 5mg/m^2
...


The rest of the "plus" days are pretty much the same as the Day +1.  I'm sure they will be monitoring all kinds of stuff, giving me additional meds, etc., but this is all the info I have right now.

So yesterday I got the Hickman Line, and this morning we started the chemo.  For the Busulfan, they need a special machine (the one with the green display) -- not sure why, but here's a pic of my Trans Pal from this morning:


It's gonna be crazy walkin' with that thing, but after the Feud, it'll be time for laps.  It's been a rough adjustment, but I'm feeling a bit better now than I was this morning.  More posts coming this week, so come back often.

I will kick its ass,

-jg

10 comments:

  1. So.. more chemo? Assuming this is to make sure that they've made sure that they made sure that you're confirmed to surely still be in remission?

    Flubdramine? Bulshifan? Fhqwhgads!

    Happy Birthday to Big O notation..

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  2. This chemo is to annihilate my immune system and kill my bone marrow so the donor's can be infused. Wacky stuff.

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  3. KIA Jaggu... Miss ya.. Happy Birthday to 'Owion'..

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  4. "kill my bone marrow so the donor's can be infused?"

    brrr... that just chilled me to the... never mind. sorry.

    :)

    yeah, that is pretty wacky stuff. keep the positive visualizations going and i'll send some light & love your way.

    you know, not sure if you're into this idea (or maybe i told you already months ago?), but....

    i met a woman last year who, in preparation for surgery (if not for cancer, something equally effed-up) made a recording of herself speaking a visualization/meditation about her body accepting the procedure, knowing what to do, healing itself, etc. and she specifically set the intention for "perfect health" -- why aim lower?

    anyway, in addition to listening to it in the days before the procedure, she convinced the anesthesiologist & surgeon to let her listen to her recording during surgery.

    (their objection? "you'll be unconscious! you won't hear it." ha!).

    so she had this message from herself to herself streaming into her unconscious, in her own voice, the whole time.

    from what i understand, her health is pretty damn good these days.

    anyway, just thought i'd toss that out there. you know, since you can't watch hockey, you mioght need something to do...

    ;)

    love and light,
    amanda

    keep kickin' it!

    P.S. happy birthday orion!

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  5. @Amanda: thanks. I love your love and light! Sounds like a smart woman you met. I have my own method of doing "intentions," and yes, nothing less than "perfect health" will be acceptable. One question: why do you always comment as "Anonymous"?

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  6. John, keep on fighting!
    Virtual hugs to Orion and the family.
    From Belgium with cheers,
    Michel

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  7. Wow, that's some contraption you have there... you should get some prinouts of people's faces and hang them up so you can take walks with them. Maybe talk on the phone at the same time - just like a leisurely stroll down the boulevard with a buddy. Mostly.

    Thanks for all the updates - keep your eyes open for a couple of little iOS gifties for when you get tired of Howard.

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  8. haha -- to answer your question:

    because i'm a bit of a clueless luddite, despite the fact that i work online these days. i use AIM IM to work online with planet waves, but the first time i tried to comment here it didn't accept my AIM id, so i gave up and went anonymous. pathetic, i know. at this point i should just sign up for a user account on... what platform is this running on again?

    yeah, pathetic. *sheepish grin*

    :P
    amanda

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  9. @Amanda: well, the blog is on blogger (formerly blogspot) which was bought by google, so you can use a gmail account. I'm guessing you don't have one. I'll send an invite to your hotmail account.

    ReplyDelete