letting go

Saw Bill at the hospital in the 7th floor. He is doing better--alert and off ventilator and oxygen tube. I can't stop sobbing whenever I see him since the talk with the palliative care team last Wed. They were aggressive and unequivocal in telling Abby and me that he was going to die. One doctor said it was a matter of weeks to months and another said it was a matter of days. Both Abby and I were crying.

On Friday night I had a conversation with Abby about what to do. We considered Bill's wish to die at home in his medical directives. Knowing this, we both concluded that if Bill deteriorated significantly further then the best thing to do was to take him home. I feel certain that for Bill, being with Sophie and Olivia at home would be a most meaningful way to spend his last remaining days.

I got Sophie and Olivia a picture book called "Invisible String" to prepare them for Bill's death. The book talks about an invisible string of love that connects people even when they are not physically here. I've been talking to them about their dad being in their hearts, even if he is not with us.

I still hold out for a hope for an experimental drug for scleroderma. I am still talking to Dr. Luisiri about a drug Dr. Furst recommended called Rituximab. But I am beginning to realize that I might be clinging to an unrealistic hope.

I am heartened by Janet's research that shows Bill can still get dialysis with hospice care. Hopefully Abby will talk to the social worker tomorrow if Bill could continue his feeding tube at home.

Janet, btw, could you look into Rituximab? Anything you can find out about that would help us.

And Eve, it would be wonderful to see you, Arnie and your baby. Please visit us when you can.

Kris