My blogging has been getting more and more infrequent it seems. Mostly because there isn't a whole lot to report. All the exciting stuff happened months ago, and I would be perfectly fine if no more exciting things ever happened to me.
Emily and I spent the last eight or nine days in Florida visiting relatives. We rented a condo on (well, near) St. Augustine beach. My family had a condo in the same building for a few days overlapping as well. So on Saturday night we had a big family-family get together and a faux, belated wedding ceremony.
We spent the rest of the time just doing not much of anything and eating. I spent a total of about two hours on the beach. I really just don't like it all that much. It's really hot and the sun is beating down on you, and I dislike putting on lots of sunblock over and over again. Emily had a good time though. We went out at night once and watched a storm over the ocean which including much lightning. I like that. No sun.
It was excellent to see all of my nieces and nephews, and everyone in my family again as well. It would be great if we could make a habit of it but I just don't see it happening. Neither of us can plausibly get enough time off every year to take a week in Florida and do something else (and there is a huge list of things we want to do). Oh well. We also went to Gainesville for a day to see Dragon's Lair farm again (and Randal and Celia and all the pets). Later that night we caught up with Chelsea and Steve and ate dinner at Satchel's Pizza. Even though I grew up on the east side of Gainesville and remember Satchel's opening and thinking "what a weird place to put a crazy pizza place", I never manged to eat there until now. It was great. Emily took about a thousand photographs over the course of the trip. Sometime I'll put some highlights on here.
Today was a chemo day, though we were only at the infusion center for about an hour. All I received was an Avastin drip. This morning and evening I took my first dose of Xeloda. The pills aren't too big, but I get to take seven of them. It's still way more convenient than the alternative. It's still way too early to tell how I'll tolerate it. Right now I feel fine. I even went for a 15 mile bike ride this evening, which was nice. My feet are peeling, which is part of hand and foot syndrome. It's probably from all of the walking and sand I encountered in Florida. It doesn't hurt, but I can easily see how if it keeps up it could. I didn't know how I'd feel for the day, but it ended up being very good.
I got a call from my boss while I was on my bike ride about payroll for the week. My "vacation" is at the moment an unpaid one it seems. I suspected this was going to happen, and it did. "They" (work in the big sense) think I don't have any annual leave to take, which I don't according to the system. But my understanding of the sort of disability system I'm on is that out-of-band from that I can accumulate 40 hours of annual leave and then use it accordingly. I thought I coordinated it with the leave people, but apparently they don't think so. So it's entirely possible I took a one week unpaid vacation, but it was worth it. It would be nice if in the end I get paid though.
Oh and one more thing. This morning we bought tickets to see Thievery Corporation play in Baltimore. They don't have concerts all that often and I seem to miss the ones around here. But not this time! We got excellent seats (second row from the front, dead center) since we bought them about 30 seconds after they went on pre-sale. We almost got the first row, but they were sniped out from under us! They were expensive too, but we never go see concerts anyway so it's okay (way to rationalize!). The concert is the day after my birthday, so maybe it's a birthday present to myself.
Monday, August 17, 2009
Sunday, August 2, 2009
Been a while
It's been a while since my last post. Not a whole lot has been going on. Just normal "life" things.
Last weekend Emily and I went out to Frederick and ate at a Cuban place for lunch (which wasn't altogether impressive). Then we drove up to Catoctin Mountain Park and hiked around for a couple of hours, nothing too serious. Though it was good to get outside. We missed a turn or something and ended up on a mountain road and had to walk a few miles back on it. The route was supposed to be a loop through the woods. Oh well. The original plan was to drive back to Frederick, waste some time, and eat dinner at Nido's, a nice Italian restaurant. It seemed a little silly to eat out twice in one day, but whatever. We were still quite stuffed, and I honestly wasn't feeling all that good, after our hike so we just came home.
I continued to feel worse and it culminated with some stomach emptying in the wrong direction in the middle of the night. I felt pretty terrible on Sunday as well. I thought I might have been constipated, because when you get really constipated your tummy rejects more stuff being put into it. I took several methods to alleviate this which eventually worked, but honestly I'm not sure I really was all that constipated. I didn't see it coming and usually I can. I think I just got a stomach bug or the Cuban didn't agree with me. I went to work on Monday though.
In fact I went to work all week long and it was mildly eventful. I finally finished my "performance review" documents that one must fill out to theoretically get promoted at some point in the future, though I am under no pretensions that I will get a promotion this year. I felt like just putting "Got cancer, had chemo, un-got cancer" on it, but refrained.
This Saturday we went out to Red Canoe for lunch. I really like that place. I think it might be my favorite place to go eat in this area. It just exudes small-town local charm, even though it's square in NE Baltimore. The owners are extremely friendly too. I find myself wanting to go there and buy lunch, coffee, dessert, and muffins for breakfast all at once. (and I usually do)
I have chemo on Monday again. Saturday we leave for Florida for a whole week, which will be great..
I saw Dr. Kasamon again on Friday. I have a prescription for Xeloda (oral 5-FU) which we're going to try out starting with the next treatment. That means I will come in on Mondays for a 30 minutes infusion of Avastin and that's it. I don't have to take a pump home either. Because Xeloda works over a longer time they can take my blood on Mondays as well, rather than me having to go in on Fridays or to Quest on Saturdays for blood work. It promises to be a great way to transition back to more normal life. It is possible it will have worse side effects for me though. Won't know until I try. I know John S., whom some of you have seen in his blog, has had terrible problems with Xeloda. But he seems to have exactly the opposite sorts of problems as me. Anyway, like I said, I won't know until I try. It'll have to be pretty bad to get me to sign back up to a 4 hour injection, 46 hours of home-pumping, and constipating for the next 5 days.
Also, Xeloda is about $3,000 a month! The IV 5-FU (which has been off-patent since like 1960) is like $50/month (not including the cost of getting it into me via IV). I met my catastrophic deductible for the year long ago so I am in the strange position of not caring how much anything costs because it costs me effectively nothing.
Last weekend Emily and I went out to Frederick and ate at a Cuban place for lunch (which wasn't altogether impressive). Then we drove up to Catoctin Mountain Park and hiked around for a couple of hours, nothing too serious. Though it was good to get outside. We missed a turn or something and ended up on a mountain road and had to walk a few miles back on it. The route was supposed to be a loop through the woods. Oh well. The original plan was to drive back to Frederick, waste some time, and eat dinner at Nido's, a nice Italian restaurant. It seemed a little silly to eat out twice in one day, but whatever. We were still quite stuffed, and I honestly wasn't feeling all that good, after our hike so we just came home.
I continued to feel worse and it culminated with some stomach emptying in the wrong direction in the middle of the night. I felt pretty terrible on Sunday as well. I thought I might have been constipated, because when you get really constipated your tummy rejects more stuff being put into it. I took several methods to alleviate this which eventually worked, but honestly I'm not sure I really was all that constipated. I didn't see it coming and usually I can. I think I just got a stomach bug or the Cuban didn't agree with me. I went to work on Monday though.
In fact I went to work all week long and it was mildly eventful. I finally finished my "performance review" documents that one must fill out to theoretically get promoted at some point in the future, though I am under no pretensions that I will get a promotion this year. I felt like just putting "Got cancer, had chemo, un-got cancer" on it, but refrained.
This Saturday we went out to Red Canoe for lunch. I really like that place. I think it might be my favorite place to go eat in this area. It just exudes small-town local charm, even though it's square in NE Baltimore. The owners are extremely friendly too. I find myself wanting to go there and buy lunch, coffee, dessert, and muffins for breakfast all at once. (and I usually do)
I have chemo on Monday again. Saturday we leave for Florida for a whole week, which will be great..
I saw Dr. Kasamon again on Friday. I have a prescription for Xeloda (oral 5-FU) which we're going to try out starting with the next treatment. That means I will come in on Mondays for a 30 minutes infusion of Avastin and that's it. I don't have to take a pump home either. Because Xeloda works over a longer time they can take my blood on Mondays as well, rather than me having to go in on Fridays or to Quest on Saturdays for blood work. It promises to be a great way to transition back to more normal life. It is possible it will have worse side effects for me though. Won't know until I try. I know John S., whom some of you have seen in his blog, has had terrible problems with Xeloda. But he seems to have exactly the opposite sorts of problems as me. Anyway, like I said, I won't know until I try. It'll have to be pretty bad to get me to sign back up to a 4 hour injection, 46 hours of home-pumping, and constipating for the next 5 days.
Also, Xeloda is about $3,000 a month! The IV 5-FU (which has been off-patent since like 1960) is like $50/month (not including the cost of getting it into me via IV). I met my catastrophic deductible for the year long ago so I am in the strange position of not caring how much anything costs because it costs me effectively nothing.
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