Wednesday, November 01, 2006

A crazy Wednesday

Hi everyone:

Today was a rollercoaster of a day for our patient. First, we started the day with a trek down to University of Chicago Hospital for another round of plasmapheresis, and to hand in some vials of blood to test Patty's PRA once again. We should have results by Monday; I hope so much the results are better than last time around, although we're a bit pessimistic. I offered to donate blood while I was there, since the donation area is in the same place as where Patty was undergoing treatment; I thought it would help fill the time. Unfortunately, my allergies were acting up this morning, so I was given the thumbs down.

Patty had a bit of a hard time with plasmapheresis today; for some reason, it gave her abdominal cramps, chills, a reddish hue to her face, a pounding headache, nausea...and a par-tr-idge in a pear tree. Okay, maybe not the last part. That really was a bad joke, although the symptoms I describe are accurate. I hope there's no meaning in this, but of course anything new now seems like a threat.

Kelly and Connor braved the cold last night for a long round of trick-or-treating. Unfortunately, their "take" for the night did not include a lot of my favorites, so the overall experience was a bit disappointing. They had a great time, though, so I guess there's something in that. Okay, that may have been an even worse joke...guess my sense of humor is a bit awry today. Patty and I are actually feeling a bit guilty about Halloween this year, because so much of it seems to have been an afterthought. I think it's important to try to pluck some semblance of normalcy out of the general hustle and bustle; sometimes, though, stuff falls through the cracks.

MaryKate brought Emma (a.k.a. the cutest baby in the history of mankind) to Kelly's school today for a class event. Patty and MaryKate visited later in the afternoon while I ran errands. I went to fill one of Patty's prescriptions and instead of being charged the $5.00 co-pay I expected, I was told I would need to fork over $265, because Patty "no longer had coverage." I'm pretty sure this was the first time in my life I nearly swooned. I called Patty, who called her benefits advisor, who informed Patty that for the next two weeks we would need to pay up front, collect receipts, and then submit them for reimbursement. Fortunately, we had just filled a fresh month's supply of Patty's most expensive prescription drug, which runs about $3,000 per month.

Of course, this news was really hard for Patty to tolerate, and she again had a bit of an emotional breakdown. In our lighter moments, we treat all of this as a huge comedy of errors, but when these surprises are fresh they're a bit hard to swallow. Patty has become much more distraught about things that would have previously left her unfazed, and this makes me worry. I do, of course, understand, but I just don't want to add too much anxiety to the burden she already bears. I don't want stupid and, ultimately, insignificant things like broken car windows, flying trampolines or anything else, taking even a moment away from what we've come to love about our life.

I wanted to thank all those who have written or called lately with words of support, including my parents, our friends Shari and Ron, our neighbor and dear friend Denise, and so many others. I also feel gratitude and adoration toward Patty for her kind words about me the other day, although I feel a bit embarrassed, for some reason. I did want to clear the air about something, though, in case there's been any misconceptions. Patty said something along the lines of, "Brian worries that people might misunderstand his intentions," in reference to the nights out I've tried to put together. Please understand that this worry is not based on any actual situations we've encountered during this health struggle of Patty's; this is just the richly neurotic side of me demanding an audience from time to time. Having said this, I appreciate and agree with the comments people have shared. I will keep doing what I can to try to help make this whole bizarre experience a great memory some day, even if we need to beg and borrow (sorry, not steal) to make it happen. Not to sound too sappy, but please pat yourselves on the back for everything you've done to make Patty feel special.

Tomorrow is family night #2. Connor has picked chili, hot dogs and mac-and-cheese, followed by a family game. I'm looking forward to it.


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