Wednesday, December 2, 2009

Day +29

Not much to report here (which I am very happy to report!). The prednisone has been doing exactly what it is supposed to... I am incredibly hungry all the time, I am sleeping odd hours, and my rash appears to be settling down, or at least not getting any worse. I had a follow up appointment on Monday and everything looked ok except that my liver enzymes were high, which could just be a reaction to all of the drugs I am taking, or it could mean that the GVHD may be progressing internally. That is the irony of all of these symptoms I am experiencing... the symptoms could be nothing or they could be very serious and until they try a standard course of treatment to correct, they often cannot predict the severity or the cause. I started taking Ursodiol on Monday, which protects your liver, and then I will return on Friday for follow up testing to see if my liver enzymes are lower. If they are not lower, it will mean a battery of tests to determine the cause of the high enzymes (and trust me, this will not be a fun process).

The good news is that I continue to feel better each day, gaining strength and feeling less pain. Ha has been feeding me well, it has been nice to start spending a limited amount of time with Mai and Tal, and Ha's parents continue to help us in so many ways, taking care of the kids, cleaning and helping out with anything we need. I am still in semi-confinement, with very limited visitation. Infections provoke GVHD so I actually need to be extra careful right now to ensure that the disease does not spread unnecessarily.

I have been keeping busy, working a bit from home (busiest time of the year for us) and watching movies and old episodes of 30 Rock (courtesy of Roku). I took my first outdoor walk this morning (at 6am to avoid the crowds) and so energy permitting, I plan to start exercising every day, which should help with my recovery. That is all for now... feeling stronger and better.



  1. Thanks for the udpate. All good news; fingers permanently crossed.

  2. Good to hear from you guys!!

    We are all pulling for you here in VA.

    Cyber Hugs!!

  3. New York is rooting for you, too!
    Except in New York they don't know how to pronounce root, or roof, or water.
    Oh, never mind...
    Love you Ron - Laura, Matt and the kids!

  4. We are so thrilled that things are moving forward. fingers, toes, and limbs all crossed for you (you know Fans of Ron by their funny walk these days). Hugs and love to you all! from Sue and the boys.