Friday, August 20, 2010


This has been an oddly difficult week for me and I'm not sure exactly why. I have felt tired and somewhat sad.

The remembrance for my Aunt Barbara was this past Tuesday at her home in Indianapolis. I was able to switch my chemo from Tuesday to Monday so that I could attend. It was the first week of a new session so it included the IVIG as well. My creatinine was at 3.4 up from the past 2 times where it was at 3.1. The week prior was my "week off" from chemo so while I still take the steroids during that week, I take less. 3.4 isn't a terrible number but because it did pop up it does make me feel like my kidneys are steroid dependent. I hate the steroids but I hate the idea of dialysis more. Or do I?

Went to the salon this week to have my hair color touched up. For those who haven't seen me in a while I'm blond. 3 hours later I emerge looking pretty much the same as when I went in. No unsightly roots but still short curly hair and a face and midsection distended by steroids. I hate that I look like I do and I hate that it bothers me so much even more.

It's almost been a year since my BMT. While I definitely feel better than I did a year ago I was expecting or hoping that it would be more successful. So to find myself almost a year later on chemo with more treatments to come is a bit depressing.

Ben and Declan had a wonderful time at Windell's, a freestyle skiing snowboarding camp but Ben over rotated on a flip and came home with a pretty severe concussion. He's had an MRI and an EEG both thankfully normal but his neurologist would like him to take it easy for another month which means no water skiing, tubing, skateboarding or Fall Ball Lacrosse. He is healing well but still has memory loss for about 4 hours of that day. It's hard to tell an active young boy that he needs to take it easy when he looks and feels fine but more and more research is showing that repeated head injuries (he had a slight concussion last May) are much more damaging than we used to think.

School is starting which means summer is ending, my favorite time of year. We've made it up to Green Lake a lot in spite of chemo (me), summer school (Ben) and Drivers Ed (Declan). It feels like it's been a sort busy summer. I'm not ready yet for the early mornings, mounds of paperwork and homework issues.

As I mentioned in my previous post my Aunt Barbara passed away and her remembrance was on Tuesday. It was a beautiful and loving tribute to an extraordinary woman. I'm sure that is part of what has me feeling down as well. I find it incredibly painful to see people I care about in pain.

So here I am feeling worn out and sad and feeling a little like amy (amyloidosis) has gotten the better of me this week. But maybe it's just life and amy and after a good lie in tomorrow morning I'll feel more like myself. After all, I'm still here. I still feel better than I did last year. My family is awesome and my friends are a godsend. Boo fricken hoo. It's time for a cocktail!


  1. It's 5:00 somewhere and time for a cocktail... Loved having Dad's special Manhattans with you at the lake this summer and miss it. So, I'll pour a glass of wine, drink a toast to us, throw mud in amy's eye, and look forward to the next time. Widdley wah!