Ed's Journal - Mar 26, 2009

2009 March 26

Created by Susan 14 years ago
Subject: week 5 (Ed wrote this on March 26) The saga continues ... Last Saturday, Susan and I went to the annual ball put on by the local country dance group. It was notable not only that I actually danced (twice) but that I had a long chin-wag with Steve. I met Steve shortly after moving here. He's a much better dancer than I, and when the spirit moves him, he'll even call a few dances. But it wasn't until recently I learned he had gone through exactly what I'm going through, Yup, bleeding tumour, unsuccessful surgery, chemotherapy, the whole nine yards. Except that he did it fifteen years ago. Those were the stone age days of chemo, and he was on it for a year, with horrible side effects, especially vomiting. I've escaped most of the side effects. They told me that between 3 and 4 weeks I'd see the hair loss, but it's been minimal, and it's now week five. Mainly it's been fatigue, but you know how lazy I am anyway, so several naps a day don't bother me. I spent yesterday in the hospital getting blood transfusions. Tuesday, my hemoglobin was 7.2, the lowest it's gone, but they went ahead and did the chemo first and then the transfusion. For those unfamiliar with the chemo process, I spend a day with IV tubes pumping the dangerous stuff into the port implanted in my chest in the "beauty salon." Photo attached. That's because if there's going to be a reaction, they want the patient right under their noses. This week, two patients had reactions, and immediately, there were two doctors and six nurses all over them. Then, they fix me up with a baby bottle to wear for 48 hours in a fanny pack. My body heat forces the chemicals through tubing into the port in the chest wall, The baby bottle is the biggest pain, especially at night, as you might imagine. I was disappointed in the hemoglobin count, as it seemed a step backwards, but the whole precess has been two steps forward, one step back; and sometimes, one step forward and two steps back. But as long as the overall direction is forward, I'm satisfied. Three more weeks of chemo before a CAT scan to see what the tumour has been up to. Then, win, lose or draw, we'll take a vacation. This weekend, there's a big seminar in King of Prussia, Pennsylvania on various aspects of the Revolutionary War, and we'll be going. There's too many lectures for one person to cover, so Susan will be in one hall while I'm in another, and then we'll compare notes. Sunday afternoon, there's a VIP tour of the Valley Forge museum, and we hope to flush out a friend or two from the Philadelphia area to join us. While we're gone, we'll have houseguests coming in who live up by the Canadian border, so they'll look after the house. So I'm keeping up a social life despite the medical problems. Not all problems are medical, though. I felt blindsided when I opened Saturday's mail. Blue Cross has this form they send me lots of - an "EOB" or "explanation of benefits," which I'm sure they're quite proud of, as they think it tells policy holders everything they need to know at a glance. Bull. After a couple of long phone calls to them, I'm only beginning to understand it. Anyway, I get one that shows some $66,000. and change in hospital bills, but the amounts are all listed in the "Not Covered" column. Naturally, I called immediately, only to be told by a recording to call back Monday morning. On Monday, I learned that they had ordered the medical records to compare to the bills and in the meantime they just deny everything as a matter of routine. So I don't have to eat my gun after all, or declare bankruptcy, or more likely, sue the bejabbers out of Blue Cross. Darn, that would've been exciting. Thank goodness for Lamb's Artillery, or I wouldn't get much of a dose of RevWar goings on around here. The local SAR chapter meets twice a year, and it's strictly knife and fork. No color guard, no 18th century dance, no History Day at the local schools, none of the stuff we worked so hard to set up for Riverside (well, others did, anyway, mainly Roger, Hal and Dave, I just tagged along.) The most participation I've had has been as editor of the newsletter for New York State, but I've resigned even that for obvious reasons, and will be putting my final issue together shortly. My efforts thus far, if you're interested, may be seen at: http://tinyurl.com/6vda9j http://tinyurl.com/dzc7em and http://tinyurl.com/cskqck