I had my follow up at MGH on Friday and my liver enzyme counts decreased a bit, however they were still quite high, so the doctors prescribed an additional new drug to try and bring the numbers down further. The steroid (Prednisone) appeared to be working but they felt that I was going to need additional help to bring the counts down to a reasonable level. This new drug (Mycophenolate) is even more powerful than the Prednisone and packs some not so pleasant side effects, so the past few days have been difficult. The combined effect of these drugs is similar to the sensation of drinking 20 cups of coffee per day, so I am constantly tired, yet cannot sleep... a vicious cycle which I hope will be short term. I have a follow up appointment tomorrow and we should learn more. The hope is that the counts continue to go down, so they can wean me off of these drugs as soon as possible.
Additionally, the symptoms of GVHD have continued. The original rash on my chest and back has improved, however it has really escalated on my face and head and so the net effect is about zero. Specifically, the skin on my face, ears and eyes has turned bright red (looks like I have been enjoying a vacation in the Sahara Desert, and forgot my sunblock) and I have what Mai affectionately refers to as "elephant ears", as my skin has really thickened and dried out. This is all pretty standard stuff for the skin version of GVHD, and again the hope is that it stays localized on my skin and does not progress internally.
At 33 days, I am exactly one third of the way through my first 100 days. The 100 day mark is significant as many of the restrictions I am presently subjected to will be lifted. I will be able to start eating a more normal diet. I'll be able to spend some time in public, which opens the door to restaurants, movies, supermarkets etc... all simple activities that I have taken for granted for the first 45 years of my life. Now, a simple dinner and a movie with Ha, or a visit to the aquarium with Mai and Tal, are completely out of the question, and so these are things I think about and really look forward to. How my life has changed in such a short time.
Everyone in my house is now healthy, so I have been able to spend more time mingling with Ha, Mai and Tal, which has been nice. I have learned that Mai is pretty good at Sesame Street Rumba (a card game we play often and she beats me regularly). And Tal, at the age of 2, has learned the full alphabet, and so he can now successfully complete his alphabet dinosaur puzzle with very little help from Dad, which he does several times per day. Ha continues to amaze me with her ability to keep things going and provide support to me in ways neither one of us ever considered 9 years ago, when we recited to each other "in sickness and in health". My only fear is that I am setting myself up for a lifetime of doing laundry and cleaning dishes, based upon the inequity of our situation right now. I am going to need a strategy for this later.
I hope you are all enjoying the snow and I will report more when we hear.