Sorry I'm so late in posting a blog entry today. I was running some errands for part of the afternoon--groceries and the previously mentioned coffee-maker--so this is my first chance to devote time and thought to this.
Patty has had a pretty miserable day. She vomited early in the day, and has been fighting the urge for more of the same ever since. Typically, Patty improves as the day progresses; today was an especially unpleasant exception. As frustrating as her physical travails are, I am worrying more and more about Patty's ability to emotionally and mentally tolerate day after day without real relief. Last night, and for the first time, Patty admitted that she is becoming worried about dying. I had to admit that I had jumped into the lead on her behalf long ago. This is not to say we're convinced there's no reason to hope; it's just that we think there's a legitimate reason to worry.
We spoke to a doctor on the transplant team late this afternoon. The message we have heard now from two doctors is that they agree it's too early to presume none of these medical interventions will be effective. In each case, we heard, "You're only 45 years old; you're much too young to give up." We agree--although Patty has said, time and again, that she doesn't want to keep trying things that make her more and more sick, if the prognosis continues to fall between pessimistic and bleak. Again, we hope that these notes I'm writing will one day form the basis for a "boy, did I overreact" scenario.
We also heard that lupus will be explored in greater depth in the near future; Patty will soon see a specialist who is familiar with cases similar to Patty's. Later this week, Patty will have her PRA tested again; after this, doctors will have further conversations with us about future options. In addition, Patty will undergo plasmapheresis and IVIG infusion.
On the positive side of things, our family is experimenting with a weekly "family night" -- where we make dinner together, talk about some of our issues/challenges during dinner, and then play a game or watch a movie. We're feeling like we need to connect in a more deliberate, planned fashion. Family night #1 is starting, so I need to sign off.