Monday, June 29, 2009

DAY +26: No Bad News but No Good News

Top Line: another platelet infusion and some tests that were negative (that's good); still yechy and bone weary

Here's what I can tell you from Susan's DFCI visit today:
  • Susan's platelets, which had been up over 500 before backing down to a normal-ish 200+, were 19 today (much too low)
  • Susan had been taking Valcyte to prevent CMV infection (cytomegalovirus), which is a potentially very serious problem for immunocompromised patients
  • Valcyte's side effects can include
    -- anemia and other blood abnormalities [including reduced platelets] - check
    -- high blood pressure - check
    -- diarrhea - check
    -- nausea and vomiting - check
  • Susan was given a platelet insfusion today (which may help with the fatigue), along with saline solution, and has been taken off the valcyte
  • Susan also had an ultrasound of the abdomen, occasioned by a slight liver abnormality, and also a trace of ascites, that showed up on tests today; the results were negative, so she's likely OK there
  • Susan's blood pressure, which had been low, was too high and she's now on a new medication for that
  • Her red and white counts are decent and her weight is stable (don't ask me how, with all that she is not eating)
There's just enough going on that the hoped for Wednesday departure from Boston is now in question. Susan is scheduled for another round of tests and examination/consultation on Wednesday, and we'll have the word based on that.

Let's hope the additional platelets, and getting off the valcyte, make the difference, so that she's feeling much better tomorrow. As always, I'll let you know.


  1. Hi Susan,
    My thoughts and hopes are that you feel better tomorrow and soon will be headed for the country.

    love you,

  2. dear susan! i say what gail says: hope you feel better tomorrow. steven and i are driving from the city to albany early august. i keep thinking of visiting you at your country house... you will be enjoying summer, relaxing and comfortable!!! jerry, thanks for the updates. love to all, liz