Hello, everyone. This has been a crazy summer.....end of June and all of July were "ups and downs". Low platelets, low white cells, blah, blah. No clinical trial treatment, just lots of "keeping an eye on things". We did have plenty of good days....went to the beach at least three times (used the handicapped placard and special needs wheelchair to full advantage ). We also had several very good lobster rolls (Thanks especially to Pat Marwell!) and visited the Franklin Park Zoo with Carrie and the girls. We had a fun birthday dinner for my sister and I got to see all my siblings and a few cousins, too. The last week-end in July, we took the first "getaway" we'd had since last year and went to Maine to stay with friends for two nights. We had a lovely, relaxing time and came home on Sunday afternoon. The next day, August 1, all hell broke loose.
I ended up late in the afternoon with an emergency trip to Norwood hospital ( had a temp of 104 and bleeding). They stabilized me, started some IV's including a super-antibiotic since they suspected I had a penicillin-resistant blood infection. Then I had a wild ambulance ride from Norwood to Bostom Medical Center (up the expressway with lights and sirens......I hope never to be repeated! ). There I spent 4 days in ICU with the BEST bunch of nurses and doctors ever! It was a hellacious four days....no sleep or food(just ice chips), lots of tests and IV's. Then I was finally moved to a medical floor for another 5 days. I was "neutrapenic" so I had a single room with a fantastic view of the Boston skyline.
So, now I am home...gathering my strength and recuperating. I don't know when the Amyloid Center will start up my treatment cycle again. I've already been back for a visit to the clinic since I got out of in-patient, so I imagine I'll be going back again soon before any decision is made.
My family was fantastic. I was never alone in the ICU...always had Steve, Carrie, Sarah or Alan keeping an eye on things. Casey sent in a beautiful picture of the beach (sans ocean!) that he did for me and Charlotte and Elizabeth made me beaded necklaces. My wonderful "in laws": Paul, Brooke and Matt, came to visit, too. I am SO lucky to have such a beautiful and fabulous family. And even MORE lucky to have them within driving distance. I so appreciate their presence. XXXXX
The whole time I was in the ICU I kept repeating the words of a favorite hymn that I had just heard up in Maine "Jesus calls us o'er the tumult of life's wild and raging sea.......". It kept me focused on God, my church and "getting through" the tumult. We never know when our calm seas are going to turn raging and being able to focus on a hymn or a prayer really helps.
Bye for now. I hope everyone enjoys the last couple of weeks ot the summer. We hope for one more trip to the beach if all goeas well!
