Friday, November 13, 2009

Friday afternoon

Well, in the end I got out of bed last night and spent time here adding a post, and then hunkered down on the couch and read for a couple hours and ended up back in bed about 4:00 am. Then David came home, early. I was able to go back to sleep and slept until 7:30, late for me. But I think the interrupted sleep - 5 hours on the couch and 3 in bed - wiped me out a little. I haven't done much today. I didn't take Jessie to the park because it's cold and overcast and it was too late to get there and have a good walk and get home and eat something before I had to take the Emend ($100/anti nausea) and steroid pills. So we went for a walk in the neighborhood, then I got coffee and had breakfast and took my pills. So far no side effects from the NuLasta shot that I can pin down. I mean I feel achy in my hip joints and shoulders, but that could be 5 hours sleeping on the couch and the overcast weather or general age and decrepitude.

Apart from reading (I'm re-reading "In the Country of Illness" by Robert Lipsyte; I learned about this book from H. a woman I met through my ex-husband S, who was in his cancer support group; it was incredibly helpful to me then as a caregiver; now I am reading it from the perspective of a cancer patient - sobering; one interesting thing is how far treatment standards seem to have come since the book was written - about 10 years ago I think), I spent most of the day on the phone - calling the disability insurance carrier several times, and being called back by them eventually; calling my employer's employee assistance unit and being called back by them, calling Kim and talking to her about all this (and other stuff), calling Dr. M to try to speak to his office manager who handles the paperwork for disability claims (she had left for the day; I was told to talk to her on Monday). So many details, requirements, forms, questions, restrictions, rules, inquiries, hand-offs from person to person. I mean I am feeling pretty well and had some difficulty dealing with it all. I can't imagine what it would be like for someone really in pain or otherwise dealing with significant physical problems (like how would you talk on the phone, take calls, answer questions, if you had to park yourself over the toilet to throw up all day?) At any rate, it appears the process has been started by which I may go back to work part-time next Thursday, from home (although getting approved to work from home longer time as part of short-term disability appears more complicated; well - one thing at a time).

Now we're waiting for UPS to deliver the "new" bike David ordered on eBay, a vintage Raleigh, which he will begin anew the process of making his own. It is supposedly in the area, and to be delivered today.

Since I brought up H above, as having given my ex-husband S, and me, the book I mentioned, I want to say something more about H - may she rest in peace. She like S was a retired teacher, originally from NY or NJ, I forget, relocated to Atlanta like S. They met in the support group. She was older than he; in her late 60's when we met her I think. She wrote poetry. She was caring and kind. After the first chemo protocol given to S gave him TB rather than curing his bladder cancer, he had to undergo a major operation in which they removed his bladder and built a new one from a piece of intestine. He was in intensive care for 7 or 10 days and in the hospital at least 2 weeks. And every single day he was in the hospital over that time, he received a card in the mail from H. Sometimes with a separate note, sometimes just a card with a brief message - kind or funny, some times a poem would be enclosed - but a card arrived for him every one of the days he was in the hospital. I will never forget how much that meant to S. I was there every day, of course, and others visited. But something about H taking the time to write to him daily - that really touched him, and in turn, me. H. was in remission at that time, but sometime during the next 18 months of S's follow up chemo and radiation treatments, her cancer returned and she died. She was a wonderful person; I feel lucky to have met her - may her memory be a blessing to her family and to all whose paths crossed hers.

Peace.

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