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!

Monday, August 9, 2010


We lost a member of our family this past Saturday to complications associated with lung and bone cancer.

Our Aunt Barbara was my mothers only sister and last living member of her immediate family, her brother Jim and Mother Muggy having both passed away several years ago.

My mother and her sister were six years apart in age to the day. Barbara left home I believe at age 17 to attend college and never returned to live with her family again. My mother being only 11 at the time says she really only got to know her sister well as they both became adults.

To me Barbara was always larger than life. She was beautiful, accomplished, sophisticated, generous and brilliant. Barbara lived and traveled the world. She was 80 so it was not a short life but none the less a life cut short.

While we mourn for all of her family left behind I feel most deeply for my cousin Kaa and my mother.

Kaa lives overseas and for the last several months has put her life on hold to care for her mother. Obviously it's where she wanted and needed to be but through my own illness I have spent a lot more time with my own mother than I probably otherwise would have. I have gotten to know her better and appreciate her more. She has been a source of strength for me and so for Kaa, as a daughter losing her mother my heart breaks.

My sister Kate was just recently here for almost two weeks prior to moving her family to England. Kate was living in the Cayman Islands when I had my BMT and she came to Rochester and spent 2 weeks away from her family to help care for me. She put her life on hold for me. My mother has lost her sister and I was so sad last week just thinking I might not see Kate again for another year. My heart breaks for my mothers loss as well.

I have been blessed with many dear friends and my mother and my sister are not the only people who have selflessly put their own lives on hold for me but when you lose someone in your family it's your family you cling to. Only they truly understand your loss.

Barbara lived a rich life and next week we will gather to celebrate that. Sad for our loss but so much better for having her in our lives for the time we did.