Back from a vacation to Florida

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.

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.

It's been ten days since my last post!

I finished that plumbing project. Nothing like necessity to speed things up, eh? I've now snaked the drain a few times and it appears happier. One of these days I should probably get a real plumber in here to auger the whole underground pipe. But why pay for something now that I can to get much worse later?!?

Well I had a pretty uneventful week up until Thursday night when my mom and Holly flew in. We hung out for the whole weekend and it was fun. Emily and I introduced them to Top Gear and they thought it was hilarious, as all real human beings should. We ate lots of yummy food. We went to Ackbar's for dinner Friday night (their first Indian food, I believe). We ate at Red Canoe for lunch on Saturday, Indian food (leftovers) for dinner Saturday. Sunday we amazingly got up the energy to go into DC, walk to Georgetown from the Foggy Bottom metro stop, explore the cozy expensive neighborhoods, and went to Dumbarton Oaks (definitely a worthwhile trip, especially during flowering season). After that we had some much needed ice cream based food-like things. Then we stopped at Metro Center and ate at Chef Geoff's again. Sadly mom thought the bun on her crab cake was stale, which was certainly very disappointing. I ordered the same thing I did last time (basically Indian-style chicken) and it was just as good.

Didn't do much in the way of work or exercise by virtue of all these things.

Last Friday I had appointment with Dr. Kasamon (just a regular one). Mom and Holly came along. I was going to have them sit in with me, but he was running unusually late by 10:30AM so I decided against it, he came out and said hello at the very end though, so at least they know what he looks like or something. Another reason is that I didn't want crazy questions from mom getting in the way of my pre-prepared list of questions and concerns. My mom had pointed out (first thing upon seeing me at the airport) that one of my pupils was hugely dilated compared to the other. That's generally not good and nobody has ever pointed it out to me nor have I ever noticed it myself. But it's definitely true. So Friday Dr. Kasamon had me go to a STAT brain MRI. (MRIs are neat). Apparently there isn't anything seriously wrong. At least no masses or edema or blood clots. I haven't seen the MRI report yet so don't know if contains any other little notes. I have persistent headaches that occur right behind my right eye (the screwy pupil one), nosebleeds in my right nose, and earaches in my right ear. Something seems fishy. I kind of thought it was some kind of new found allergy, which maybe it is. I am going to see a neurologist recommended by Dr. Kasamon some time though, so maybe we will sort out my crazy brain.

I had another treatment on Monday. I didn't feel too hot at first, but not too bad. I slept marginally better than the week before. My brain wasn't running at a million miles an hour, but I kept waking up some rather bad acid reflux which is quite painful. I still haven't quite mastered the right cocktail of drugs to try and bring that under control. Then I just felt awful for all of Tuesday. I can't put my finger on it, but it wasn't right. I had a big headache and my stomach just felt bad. I took an Ativan (along with an Aspirin) before bedtime and I slept like a baby. I feel pretty good right now.

I put a feeler out to Pat to see if he wanted to do something this weekend. I kind of want to do something outside involving hiking and/or camping. I was looking at kayak stuff too. Emily seems pretty keen on kayaks though I've never really been in one. Not sure we want to blow a substantial amount of money on yet another hobby that we'll indulge in once in a blue moon ;) Though I think hiking might be all we accomplish (this weekend at least). Biking would be good too, but I'm the only person with a bike so meh.

We're back in St. Augustine from August 8th through August 16th. We're certainly looking forward to it!

This is me hiding in some bushes at Dumbarton Oaks.


How is it that chipmunks are so cute?


A bird of some sort hopping along a water feature at Dumbarton Oaks.

Stuff

So another week has gone by. It was a chemo week. I had fewer side effects this time around than before. I still couldn't sleep very well on Monday night and had some pretty bad stomach acid in spite of the Protonix. I actually suspect it is the Aloxi (anti-nausea) that is giving me the most problems. I don't think I really need it but they seem to continue to think so. I will discuss it with Dr. Kasamon at my next appointment. I slept a decent bit on Tuesday and didn't feel so hot, primarily thanks to the night before. Wednesday I had the port out and, well, that was about it. The hand and foot syndrome was not as bad this time around as last.

We still don't have any furniture for our porch and Emily is getting a tad cranky about it. I'm not paying $100 to have $120 worth of flat-pack furniture delivered though. We are both sitting out on the hammock now. Emily is reading a book and I am obviously on the laptop.

Still no forward progress on that workbench.

Wednesday night we ate at Akbar's, an Indian restaurant in Columbia. The food was excellent. I never knew I liked Indian food so much. Our server guy was hilarious but I think he forgot we were there for a while. I was in no hurry so I didn't care. There were very few people there.

Saturday we did absolutely nothing. We never started the cars, which was a nice change. Emily weeded and generally kept her gardens, I mowed the lawn. We both worked out later that night too. I've got some sore muscles around my dorsal area.

Today Emily went out to the barn and rode Addy and I went with her. But this time I brought my bike along and went for a ride from there. I have never explored out that way before so it was an adventure. I did a nice little 13 mile loop that wasn't overly hilly but plenty to give me a workout today. I'm pretty sure there is just no substitute for getting on a bike and doing hills. Lifting weights and cross training just doesn't equate. I can do 3 sets of whatever quad exercises, but climbing one hill I must do the equivalent of a 100 reps. It was a good ride. I felt stronger already than the week before. I also passed a house whose owner must be a Ham Radio guy because he had literally the biggest antenna field I have ever seen before. There were like 7 towers and at least 14 antennas. And the towers were not short. I wish I had taken a picture with my cell phone. Another time perhaps.

After we got home and cleaned up we went to Scittino's for some super yummy pizza. We skipped Opie's this time. But we did get some lunch meat for the week and Emily bought some canolis and canoli filling (her original reason for wanting to go).

Mom and Holly come up for a short visit this week. We'll be no doubt gorging ourselves on yummy food since it's about the only thing Emily and I know how to do.

edit: we have this annoying drain in our basement (for the kitchen sink and the utility sink in the basement and hence the washing machine as well) that clogs up. I have a snake and it has worked like a charm in the past, but there is no easy access so I have to disassemble things to get the snake in. I bought the PVC to put a snake entrance in, but haven't actually put the PVC in yet. I might do it tonight because it's clogged up again.

Also here are some pictures from recently:

Getting ready to ride out at the barn; notice the scrawny legs.


Off I go!


This isn't from this weekend but is typical weekend behavior for me. Notice Squirrely slumbering as well.

edit 2: I started working on the pipes, cut one in half and then realized I only have CPVC cement and this pipe is PVC. *sigh* Going to Lowe's first thing in the morning to buy the right cement and put it all back together permanently. Also, the reason it clogged is because the new lint traps we (were) using on the washing machine suck and were letting a ton of lint down the drain, so it all piled up and there is presumably some really nasty ball of crap about four feet down the pipe. I got it opened up to some degree I believe with the snake.

Three (six?) day weekend

It was a three day weekend (Friday) off. Maybe it's a six day weekend for me, though I'm not inclined to count M-W of this week as vacation.

Friday we didn't do a whole lot. I went for a bike ride, first one since the stent came out.

Saturday we had a 4th of July party/BBQ thing. Pat and Minh Chau came, as did Trevor and Dave. We've never had that many people over at once. It was nice to have people over. We're basically shut-ins the other 90% of the time. We had all sorts of food that my mother and sister wouldn't approve of. There were shrimp, a flank steak, hamburgers, and franks. I was the only one who ate franks because I wasn't really all about the rest. I hear it was good, though! Minh Chau is very good at cooking things. She was in charge of the shrimp (which I did have a few of) and the steak, which came out a lot better than the hamburgers which I was in charge of. It was good fun though. Amazingly Emily didn't take any pictures though, so nothing to share graphically!

Dave brought over his extra software-defined HF radio, the FlexRadio SDR-1000. I've got a stack of cables and stuff now. I need to fashion an antenna. I'm thinking a T2FD antenna, or perhaps an inverted V/sloper. I also need to open my computer up and install a card and get a bunch of software installed and working first. Dunno when I'll finally get around to doing all of that! I also am not allowed to transmit since I've never bothered to upgrade my Ham license above Technician. I've been reading the question pool for the General class exam so I'll probably take it at some point in the future. Then Dave and I can talk to each other without the use of any infrastructure, even though we only live about 30 miles away from each other ;)

John is a guy that I've never met, but Emily met his wife at a yarn store and it came out that both of their husbands are young and have colon cancer. He has a blog which I have been following. He's been dealing with it longer than I have, and his had metastasized to his lungs (and maybe some other stuff as well). I think I will have to do without dairy and start Xeloda eventually because I can't really return to a somewhat "normal" life if I have to spend half of every other Monday getting infusions and then haul a pump around for 2 more days, then go in and get it removed. Unless I take up working on Saturdays, I'll never be able to work full time again.

I wouldn't say that it was particularly painful (other than the last 2 seconds of it) having the stent removed. It was just very uncomfortable and after 10 minutes of it you get all jittery. My urinary tract has returned to normal though.

On Sunday Emily and I walked the #9 Trolley Trail from Catonsville to Ellicott City and ate lunch at the Bean Hollow. Then we went home and both of us didn't feel all that well. She thinks she is sick. I just didn't feel good. Later that day I went out for another bike ride.

As to bike riding, wow, I've lost a lot of muscle. I pretty much lost most of the muscle in my legs and I especially feel it in my quads. On Friday I did about 15 miles and on Sunday about 8. Both times I averaged about 13 MPH, a cadence of 75, and a heart rate of about 150. My average heart rate is about 15 bpm higher than what I used to consider normal. Which is problematic because my max heart rate is about 178, so I don't have all that much wiggle room between maximum exertion and average. Aerobic fitness will decrease average heart rate though, so hopefully in time it goes back down. I also discovered that I just don't have any leg muscle every time I hit a hill. It wasn't so much an issue of being tired as it was just not having the strength to do it. Oh well, just have to stay at it. I remember it wasn't that long ago that I couldn't get up most of the hills around here thanks to my weak Florida legs!

I'm sitting at COHA now getting my infusions. It's a blast. I have all the wood I need, mostly, to make a big workbench. I just haven't bothered to build it yet. I also need to put in some outlets in the basement. I haven't done this yet either. I must have several hundred dollars of stuff just sitting around unused because I never feel like putting in the effort to utilizing it.

Stent removal (a.k.a holy crap)

Holy crap. That was not as easy as advertised. Next time they can knock me out, thank you very much.

It's out now though, so that's the important part.

It was harder and took a lot longer than they expected to get it out, of course (though it still only took like 20 minutes I think; feels a lot longer when you're laying on the table).

That is all.

Another week gone by

So it's been nearly a week since the last post. Like I said in the last one, the chemo went better, as in I didn't feel as bad. But I've had some crazy side effects (or just unlucky problems) this week. I couldn't sleep at all on Monday, literally. And I've had some crazy constipation and hemorrhoid-like problems as well. And lots of stomach acid. I have some other prescriptions now that help greatly with the stomach acid and apparently sleeping too. There's this somewhat new drug called Rozarem which is supposedly completely non-addictive (i.e. unlike every other sleeping medication in existence). I took it Tuesday night I think? I slept like a baby, but was totally groggy for basically the whole next day. I haven't needed it again yet though. It's possible the Decadron I get during chemo is what is keeping me up or it could be something else totally unrelated.

I worked out yesterday, first time in quite a while. I was exhausted afterward and took a nap. I mowed the lawn too. Later in the day we trekked down to Alexandria and met up with Pat and Minh Chau. They moved into a new place which we went to go see. It was nice. Their three cats are adorable. I am going to catnap them. We went to old town Alexandria and had a totally surreal experience. I wanted pizza so we found this one pizza place but it didn't look super awesome so we walked like 7 blocks back to where we started and went to an Indian place because naan and curry sounded awesome. So we went in and sat down. And we sat, for a long time. No food ever came. Sometimes we would get a drink refill maybe. After like 40 minutes two plates (there were four of us) were delivered, but no food. So we sat some more. Eventually Minh Chau took charge and we just left after wasting about an hour. There were at least three people who had been there longer than us that also had no food. Their chef must have had a seizure or something, but it would have been nice for them to share that information with us. I was still in a good mood, miraculously, despite being hungry. So we had a good hilarious laugh about the situation. Then I got cranky. We went to Dairy Godmother which is a neat creamery type place in Alexandria (I think that's where we were at least) and I got a shake, but I needed actual food. After that we went to a different Indian place, which is actually on the first floor of the apartment they used to live at. It was excellent. It was apparently Emily's first time ever having Indian food and she liked it as well. I'm pretty sure it was actually good food, but I would have eaten anything by that point in time. It was fun hanging out with Pat and Minh Chau. We really need to do it more often; too bad it's at least a one hour one-way drive :(

Today we might have a BBQ with Trevor.

Tuesday I am having my stent removed. I'm a bit apprehensive about it as there is no anesthesia involved, but I'm told by several doctors who have presumably never had anything 30cm long removed through their urethra that it is not painful and is a routine procedure.

I am looking forward to biking again and hopefully even going for another camp/hike excursion or two before winter sets in again.

Other than that I am planning to have a nice quiet week at work. We get Friday off for the 4th. We might go into DC for the 4th. The fireworks are nice, but that's about it. I just feel like there is something a wee bit special about being in "our nation's capital" for Independence Day.