Wednesday, July 15, 2009

DAY +42: Bye, Bye Boston . . . BUT

Top Line: Susan's condition is stable to probably improving, enough so that she can undertake a change of scene

Yes, the Siegels are leaving Cambridge/Boston today for the country home in Spencertown, NY, and we are all happy about that. However, this is not a "proceed to go and collect $200" card. Rather, it is a recognition that she has been stable for several days and doesn't need to be tethered to Dana Farber at this point. Dr. Soiffer has sent copies of Susan's files to, and conferred with, trusted colleagues in Albany, so the care will be maintained, and, at need, Boston is only 2+ hours away (think of it, in terms of time/accessibility, as a rush hour crosstown taxi ride).

So, for those of you who commented yesterday about now being able to be in touch more directly, exchanging emails and what not . . . sorry. At this point, Susan is still not sitting up to focus on the computer and, as you should have gathered from yesterday's interview, she is not feeling in a particularly communicative mood. As that changes, she'll reach out and/or we'll let you know.

Here's the exit summary of her medical condition and consult with Dr. Soiffer:
  • blood counts and platelets continue to be decent and there's no fever
  • bilirubin is still elevated and hasn't come down this week, indicating that the VOD, although of the mild variety, remains an issue and must be watched closely, as severe VOD is a very serious condition
  • the ascites continues unabated and most uncomfortable -- the weight gain remains the same, and those pounds (plus more, given muscle mass loss on her near starvation diet over the past 6 weeks) are all accumulated fluid in the peritoneal cavity; this will likely be a multi-week resolution process and dependent on the VOD resolving
  • Susan remains extremely fatigued and still definitely spends more time asleep than awake, but she has been somewhat more alert, with longer periods of wakefulness, over the past few days; it is expected that her energy level will increase as the VOD diminishes
  • she continues to have bouts of nausea and continues to take medications for same
  • MOST IMPORTANT: bear in mind that the gravest concern for transplant patients is graft versus host disease (GVHD - remember, this is all described at the bottom of the blog and in the resource links to the side), and Susan will remain susceptible to this condition for another year or so; the peak danger period is generally 3-6 months out from Day Zero (she's 1+ months out now), but it can strike at any time and anywhere, even in Spencertown or on East 22nd Street
OK. Cici returned to NYC earlier today. Bob and Charley should be just about finished with loading the car by now. They need to make a stop at DFCI, and then it's on, through Boston rush hour traffic, to Spencertown, with Susan clutching a pillow to her stomach to cushion her ascites from the road bumps. Then she'll go to sleep directly or try to watch an episode of Mad Men, season two, and fall asleep almost directly. Then we'll see what tomorrow brings.


  1. Susan,

    Okay, I will still be glued to the blog for wonderful news, like today, even though cautious at best. We are just glad that you are on your way to the country. You will start feeling better and stronger everyday while being in that beautiful surrounding. When you are up to it, no matter how long it might be, I will wait until you are ready to start emailing. Keep eating and drinking as much as you can so you can stay in the country.

    Love to all,



  2. I"m so glad you were able to leave Boston. That's a great milestone. But also sorry that you are still so uncomfortable. I'll be following along and hoping that a report telling us that you are no longer in pain will be coming along shortly.
    Always thinking of you,
    Much love from Hastings, where I will be living for approximately 2 more weeks.

  3. All of our wishes for full recovery go with you.
    Enjoy Mad Men too.
    The Dalsimers