Saturday, November 28, 2009

Day +25

Ha and I traveled back to Mass General yesterday and after checking my blood, assessing the progression of my rash and then ultimately conducting a skin biopsy, they confirmed I have developed graft vs. host disease. It was further explained to us that GVHD typically starts in your skin (mild), can then progress to your digestive track (medium) and can then spread to organs (severe). As previously expressed, most patients develop GVHD (which is a good sign that the transplant is working). The theory is that if the new grafts are fighting against your body, they are also fighting against any cancer that remains in your body. The challenge for the doctors is to be able to recognize the GVHD, briefly celebrate(!), and then tackle the disease and try to tame it so it does not progress to the medium or severe stage.

The drug of choice for now is a steroid called prednisone, and while it carries it's own dangers, it is usually effective at taming GVHD. I started this treatment yesterday and will most likely continue for the next 10-14 days. Prednisone is a powerful drug and can provoke sleeplessness, incredible hunger, aggressiveness and mood swings. I hope I can avoid sudden urges to wear white tank tops and devour large amounts of meat at 3am.

Ha continues to act in superhuman ways.... in our household of six, 3 are sick, 1 just completed a stem cell transplant, and she and our 4 year old Mai are the only members that are at full strength. I do not know how she does it, but along with help from her parents (who are both sick) she has managed to keep it all together, cleaning, cooking, laundering, serving, chauffeuring and acting as all around team support. She is amazing and don't let her try to convince you otherwise.

A safe and happy weekend to you all.



  1. Sounds like SuperWoman Ha is racking up the overtime. And SuperGirl Mai is learning at the hands of a master.
    If you get the urge to eat large amounts of meat at 3 am think of this - my little sister hosted Thanksgiving and had looked forward to lots of leftover turkey - until she discovered her two new puppies had downed every leftover scrap that she had carefully removed from the bones. I see your wee hour rampage as that of her dogs...

    well, the comparison made ME smile....
    Thinking of you from New York, the Copel cousins.

  2. so glad you responded quickly to the rash and can nip it in the bud. The best news is the transplant is working. The prednisone may put weight on you but everyone I know who's been on it said it's easily reversible once you're off it.

    Lisa andd Gary

  3. I hope the GVH is under control. That sounds like quite a drug--those symptoms sound like pregnancy symptoms! All right, maybe not the aggression, but everything else.

    Hope everyone in your house heals very soon. Yes, Ha is amazing--your whole family is.


    Fran, Steve, and Lucy