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Subject: Watched One #06 (26Aug00) Couch potato I'm forwarding to you all a big e-mail I sent to Andy my surgeon updating on the last week's trials and tribulations. To all of that I will add some nice news. Jen Litterick, my best friend from graduate school took Paige's place in the care-team this week and has been with me non-stop all week. She held my hand at the arsehole doc's office while he was prodding me, helped me meditate through the final CT scan, and has generally been a wonderful healing energy. If you are lucky, Karl will post a picture of us this week together. On Friday, the day after I saw arsehole (got the days wrong below), we realized that really, I have just been doing too much and not acting like a person whose had multiple surgeries, procedures, and emotional turmoil. In response to this realization, I have had an enforced three day weekend (now in process) of basically doing nothing except eating goop through a tube, sitting on the couch, and watching movies on DVD. Jen has threatened to Velcro me to the couch if I try to tidy the house or do almost anything, and has been like one of those Mexican jumping beans getting up to do things for me when they are not within the immediate reach of the little "Jen's world of always needed items" which are spread on the table in front of the couch. These items include FYI: a phone (duh), my Pal Pilot-can't use the phone without it, lip balm, cold water, vitamin E oil for scar massage, at least two remote controls (blame Karl), and my notebook for list making of things I think I should be doing. We have watched some really nice movies including Guinevere, A Walk on the Moon, Next Stop Wonderland, and Mansfield Park, all of which I recommend. And she didn't even need Velcro. I have had a few spoonfuls of Haagen Dazs chocolate sorbet, but haven't made much more progress on the eating front because of the peg infection (see below). Am a bit anxious about starting radiation and chemo, but have to take each challenge as it comes. What follows will hopefully make you giggle at least at some points... Dear Andy, Wanted to update you on my chemo/radiation plans, as they have changed since I saw you last Friday. After seeing you on Friday, I went for my radiation simulation (which went great - everyone was impressed with how much more mobility I had achieved and I was able to get into an optimal position - Dr. Quivey was really happy). The only problem is that they want to do the high-tech computer planned beam radiation, and that means that I had to get onto the MXE machine in order to check out the final plan. They were unable to book me onto the MXE machine until the 30th of August, so at this point I am starting both radiation and chemo this coming Thursday, the 31st. This is exactly the 6 week point, so Quivey stated unequivocally that she was comfortable waiting, as opposed to starting this week with traditional radiation and then moving to the beam radiation next week. I trust her, so it's been nice to have some more healing time. Well, of course there is never a friggin' (we're trying to run a family hospital here) dull moment in my treatment course. This is just complaining...all ended well. Right after last Friday's simulation, I was to have a routine CT to help in the computer planning. The darned machine was acting up, kept rebooting and then shutting down. I was there for 3 hours with 6 piece of cotton in my mouth ready at any moment to jump into the machine, and we didn't get it done. So over the weekend some technician comes to get it fixed, but of course doesn't properly check it out. Monday comes, we spend another 3 hours in the same situation waiting on pins and needles with the cotton and everything. At one point I even got into the mask the table started to move into the CT and it broke down! It took all of my deep breathing and meditation skills to stay calm, which I have to do in order to relax my neck muscles enough to get into the required position for radiation or the CT. A bit trying. Finally, we successfully got the CT done on Wednesday. I have my verify appointment on Monday, my MXE on Wednesday and they we start the real deal on Thursday. As I said never a dull moment. And NOW to add to the excitement. I ended up in the ER on Thursday night because of my G-tube peg. It started leaking profusely with a bit of blood in it. After spending 4 hours in the ER, some junior fellow basically said she didn't know what was wrong and said I had to see Corley, the attending who placed the peg (by the way my feelings about him make Dr. Kramer look like Mr. Rogers from TV fame - he is an arrogant ass, and if you can avoid referring other patients to him I would. He is unavailable, has rotten bedside manner and gives faulty information, and has lousy fellows). His office screwed up in three ways Friday morning trying to get me in to see him. I waited 3 hours in his waiting area to get to see him. Don't you love my bitching... (probably not) Anyway, turns out that there was a local infection at the site of the peg (only 5-10% of people get them, my dumb luck) causing a great deal of pain, but no systemic problems since we caught it early. He diagnosed it based on the increase in pain I had had since the placement of the peg. As you are aware, I have a high pain threshold and I was taking 2 Vicodin every 4 hours since the surgery, which is very unusual for me. He put me on Suprax (Cefixime) for 14 days 200mg bid. The pain has subsided significantly, and today I took a total of 4 Vicodin. Expect this will decrease even more shortly. I have appended a Word 2000 document with tables showing what Chinese herbs I am taking, for safety's sake I will also forward the e-mail from Broffman whose formatting was so bad I could barely understand the regimen. Just want you to know what's going on. Hope you had a relaxing time on the East Coast. See you next month. Wish me luck with the chemo and radiation... Best,
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