In response to a question from my mother here is a little more information about what a stent is and some other stuff (and another update on my status):
A stent is kind of like a metal Chinese finger trap. They insert it into various canals in the body and expand it in some clever way. It forces/keeps various pathways open. There are lots of reasons why something like this may be needed. In my case it is likely a lymph node that was compressing my left ureter, causing my left kidney to enlarge and not drain properly (and thus also impairing my overall kidney function). A ureter is a very thin (and apparently normally almost invisible) canal that connects the kidney to the bladder, which is in turn connected to your "output" by the urethra. My left ureter is very obvious right now because is has a 24cm metal thing snaking through it keeping it open, from the bladder all the way to the kidney. Bacteria love foreign objects and thus they are known to cling to these things. Having it out as soon as possible in order, but since that's not an option yet we just have to keep a careful eye on it. I hope to get the most recent images from my last PET/CT scan and put them up. I will have lots of glow-in-the-x-ray bits (my new port and ureter, and some tumors... hopefully not too many of those). They are waiting for bacteria culture results from my urine to make sure that whatever I have will respond to the cipro, but I certainly feel better today than I did earlier... so that is a good sign in my book.
I worked 6.5 hours (well, 7 with a government mandated half hour "lunch"). I left the house around 9:30 and got home at 6:30, so it was a pretty long day for me as far as things have gone recently. I am pretty tired now, but it was a good productive day. I am going to go in late and work a short day tomorrow I think. I'm not falling into the trap of trying to have two full days in a row. If I do I'm sure come 2:00 tomorrow it will feel like someone has hit me with a ton of bricks.
My mother has said several times that I must be frustrated with things and that she feels upset reading about my trials and tribulations. Similarly when another person I know heard about my most recent malignancy she asked "Are you angry?". I thought it was an interesting question, because the answer is decisively no. Anger isn't an emotion that has even come across my mind since this all started happening. At what am I supposed to be angry? I will say that I was upset, in a sad way, as news of this started to trickle in. I know when things are not right though and I had suspected cancer for quite some time. Having some confirmation just cemented my belief. Being told that in fact I have stage IV metastatic colon cancer (as opposed to stage 1 colon cancer and recurrent Hodgkin's Lymphoma) was in fact the worst news I think I have ever received. I'd say you could probably have called me depressed about that news for at least a couple of weeks. But I was certainly not angry about it. It was depressing initially trying to come to terms with news like that though. I have come to terms with it though and it's not depressing anymore. It's just a fact and it doesn't really alter my situation or what I have to go through or what I am willing to go through and do. Hopefully I respond well and go on to live a longish and fruitful life. I don't think it's under anyone's control though. Not myself, not my oncologist, and since I'm an atheist not God. (note that you are still more than welcome to pray for my health though!) Only time will tell how I fare. I have a positive outlook though and until I am presented with a lot of evidence to the contrary that's how it's going to stay. Being young and invincible (hah!) has to count for something, yeah?
Monday, February 23, 2009
Sunday, February 22, 2009
UTI
Yesterday turned out to not be a very good day. Emily went to go visit a couple of prospective farms to move Addy to. I didn't go to the first one (too early in the morning!) but did go to the second. It was quite far away. I didn't feel all that well by the time we had left and it didn't get any better. By the time we got home I was sure something was wrong. I was pretty sure I had some sort of urinary tract infection, likely related to the stent I have in my left ureter.
We went to Patient First, a kind of walk-in clinic which is better than an emergency room. They took some blood and nothing looked bad there (which is good news) and looked at some pee. Sure enough there were bad things in my pee. So now I'm on cipro, an antibiotic, for the next 10 days. Hopefully that clears things up a bit. I'm going to talk to Dr. Kasasmon and perhaps the urologist who put the stent in and see if there is some coordination or something that needs to be going on here. I think the plan is to keep the stent for a while, until they are sure the lymph nodes that were (probably) obstructing the ureter to begin with have shrunk.
It seems like I wake up in the morning (or whenever) and feel fine for about 3-4 hours, then I start to feel worse until I finally fall asleep. Right now I don't feel too bad. I think I'm going to go to Scittino's Italian Market and get some lunch meat for the week and maybe a turkey sub for Emily and I.
Last night, after Patient First, for some strange reason I was craving Domino's Pizza, which I haven't had in a long time. Some time when I was in college was the last time, I'm sure. So it's been more than a couple of years. Well we got a medium cheese pizza. A "medium" pizza is essentially a small. And a "cheese" pizza apparently means a sauce pizza with a very conservative smattering of cheese here and there. It was easily the most disappointing part of my whole day... or perhaps the whole week. Needless to say I do not have a craving for Domino's anymore and likely never will. I almost want to buy a pizza from Scittino's, since I know it's very good. But I think two days of pizza is a bad idea.
We went to Patient First, a kind of walk-in clinic which is better than an emergency room. They took some blood and nothing looked bad there (which is good news) and looked at some pee. Sure enough there were bad things in my pee. So now I'm on cipro, an antibiotic, for the next 10 days. Hopefully that clears things up a bit. I'm going to talk to Dr. Kasasmon and perhaps the urologist who put the stent in and see if there is some coordination or something that needs to be going on here. I think the plan is to keep the stent for a while, until they are sure the lymph nodes that were (probably) obstructing the ureter to begin with have shrunk.
It seems like I wake up in the morning (or whenever) and feel fine for about 3-4 hours, then I start to feel worse until I finally fall asleep. Right now I don't feel too bad. I think I'm going to go to Scittino's Italian Market and get some lunch meat for the week and maybe a turkey sub for Emily and I.
Last night, after Patient First, for some strange reason I was craving Domino's Pizza, which I haven't had in a long time. Some time when I was in college was the last time, I'm sure. So it's been more than a couple of years. Well we got a medium cheese pizza. A "medium" pizza is essentially a small. And a "cheese" pizza apparently means a sauce pizza with a very conservative smattering of cheese here and there. It was easily the most disappointing part of my whole day... or perhaps the whole week. Needless to say I do not have a craving for Domino's anymore and likely never will. I almost want to buy a pizza from Scittino's, since I know it's very good. But I think two days of pizza is a bad idea.
Saturday, February 21, 2009
Last week
So it's been a bit since I've posted anything on here. This week was a decent week I suppose. I'm still not feeling totally normal.
Tuesday I went to work for like 7 hours I think. That was exciting.
Wednesday I had an appointment with Dr. Kasamon (more on that later), then went to work. I got to work around noon and nearly immediately felt tired. I left at 4:00, got home at 4:30 (and was still extremely tired), and passed out asleep basically until the next day.
Thursday I went to work (at like 2PM) and worked for 4.5 or so hours, didn't feel too bad... but a little tired by the end of it.
Friday I had a PET scan (no results yet), which was at 1:30PM and lasted until about 3:00PM. Then I ate some food I had brought with me (since you have to fast before a PET/CT I was rather hungry). I decided it was too late to bother going to work for just a couple of hours and came home. That was a good decision because I felt pretty terrible shortly before getting home. I went to bed at like 5:30 or so and slept for a couple of hours, then got up and felt decent later at night.
Today I am feeling pretty good so far.
One of the suggestions I had from the pharmacists at Johns Hopkins was to take colace and senna to "stimulate the bowels". I was using just colace mostly. I used colace and senna on Tuesday and Thursday night. I will say that it certainly opened my bowels up, but I think it upsets my stomach... a lot. I'm not going to take any senna anymore and see how things go naturally and hopefully I don't get the stomach pain I had been having.
A friend at work (Dave) astutely observed the mostly likely reason I have been so cold lately: I've lost a lot of weight. I weigh 153 pounds right now, which is about 30 pounds less than what I consider my "normal" weight.
As to the meeting with Dr. Kasamon, it went well. I will be using him as my primary physician for treatment. Unfortunately, the Columbia office where I see him doesn't have facilities for instant blood tests. If I wanted to be treated at the Columbia office I would have to come in (or go somewhere) the day before and have blood drawn and tested. That is a huge pain. So I will likely be going to the Tate Center, which is a big cancer center attached to Baltimore Washington Medical Center. Dr. Kasamon works out of there as well. They can do instant blood tests there. It's only about 3 miles farther away (but in the opposite direction as the Columbia office). My first treatment is Monday, March 2nd 2009. I have to go back on Wednesday to have my portable pump removed (which is also sort of annoying, but I guess chemotherapy isn't supposed to be a stroll in the park).
Emily and I are coming back to Florida from March 12th-March 15th. We're going to Gainesville this time to spent it with my family. We're hoping to come back again in the near future for the same set of days (Thursday-Sunday) and go to St. Augustine to visit all of Emily's family. Emily hasn't seen a lot of her family in a long while. I'm trying to conserve what leave I have so that I can take both of those "vacations", because after I'm out of leave I have to use this "leave bank" thing where I can still be paid even though I'm not working 40 hours a week (because of the treatment). Problem there is that I then have no leave for personal purposes, so I can't just take off a couple of days and visit Florida. *sigh* I'm sure we'll get it worked out though.
Tuesday I went to work for like 7 hours I think. That was exciting.
Wednesday I had an appointment with Dr. Kasamon (more on that later), then went to work. I got to work around noon and nearly immediately felt tired. I left at 4:00, got home at 4:30 (and was still extremely tired), and passed out asleep basically until the next day.
Thursday I went to work (at like 2PM) and worked for 4.5 or so hours, didn't feel too bad... but a little tired by the end of it.
Friday I had a PET scan (no results yet), which was at 1:30PM and lasted until about 3:00PM. Then I ate some food I had brought with me (since you have to fast before a PET/CT I was rather hungry). I decided it was too late to bother going to work for just a couple of hours and came home. That was a good decision because I felt pretty terrible shortly before getting home. I went to bed at like 5:30 or so and slept for a couple of hours, then got up and felt decent later at night.
Today I am feeling pretty good so far.
One of the suggestions I had from the pharmacists at Johns Hopkins was to take colace and senna to "stimulate the bowels". I was using just colace mostly. I used colace and senna on Tuesday and Thursday night. I will say that it certainly opened my bowels up, but I think it upsets my stomach... a lot. I'm not going to take any senna anymore and see how things go naturally and hopefully I don't get the stomach pain I had been having.
A friend at work (Dave) astutely observed the mostly likely reason I have been so cold lately: I've lost a lot of weight. I weigh 153 pounds right now, which is about 30 pounds less than what I consider my "normal" weight.
As to the meeting with Dr. Kasamon, it went well. I will be using him as my primary physician for treatment. Unfortunately, the Columbia office where I see him doesn't have facilities for instant blood tests. If I wanted to be treated at the Columbia office I would have to come in (or go somewhere) the day before and have blood drawn and tested. That is a huge pain. So I will likely be going to the Tate Center, which is a big cancer center attached to Baltimore Washington Medical Center. Dr. Kasamon works out of there as well. They can do instant blood tests there. It's only about 3 miles farther away (but in the opposite direction as the Columbia office). My first treatment is Monday, March 2nd 2009. I have to go back on Wednesday to have my portable pump removed (which is also sort of annoying, but I guess chemotherapy isn't supposed to be a stroll in the park).
Emily and I are coming back to Florida from March 12th-March 15th. We're going to Gainesville this time to spent it with my family. We're hoping to come back again in the near future for the same set of days (Thursday-Sunday) and go to St. Augustine to visit all of Emily's family. Emily hasn't seen a lot of her family in a long while. I'm trying to conserve what leave I have so that I can take both of those "vacations", because after I'm out of leave I have to use this "leave bank" thing where I can still be paid even though I'm not working 40 hours a week (because of the treatment). Problem there is that I then have no leave for personal purposes, so I can't just take off a couple of days and visit Florida. *sigh* I'm sure we'll get it worked out though.
Monday, February 16, 2009
The last few days
It's been a few days since I've written any updates.
Saturday was an entertaining day. Patrick and Minh Chau came over around 3PM. We just hung out and talked about stuff for a couple of hours, then we took a trip to Ellicott City. They had never been. We went to the Bean Hollow and had coffee/hot chocolate, and Emily and I had some food as well. Then we walked around a bit and looked at the crazy old buildings. Once home, we ate some of the chocolate cake the Emily and I made earlier in the day. We did the whole thing from scratch, even the icing! Never done that before. The cake was really really sweet. The icing is like marshmallow. Then we watched S12E01 of Top Gear (UK), which Pat had never seen. Don't know if he liked it as much as Emily and I do! By the end of the day I wanted to die because of all the sugar I had consumed. Other than that it was a very entertaining day. I was quite tired by the end of it. I think it was the first time I had gotten up at a decent hour (8:30 I think), actually done things, and not passed out in a "nap" for several hours in the middle of the day.
Sunday was not a good day. I just didn't feel quite right for most of the day, which kept me in bed. Then I felt nauseous again around 3:00 and took a phenagran. By about 3:30 I was feeling a good bit better and finally got up and moved around. It was altogether not a very memorable day. I was very cold as well. Even though the house is somewhat warm compared to where he had it last winter (we're keeping it between 67-70 when we're home), it still feels really cold. That's another reason I just hang out in the bedroom and fall asleep: there is a nice electric oil radiator that makes the room feel so snuggly. I think my stomach problems are compounded by staying sedentary so long. I need to get up and move around, get those stomach muscles doing something. It's like a catch-22 though.
Today, Monday, I had my appointment at Johns Hopkins with Dr. Diaz. The drive there was absolutely terrible. We went through the city rather than "all the way around" on the beltway. The thing is about driving up here: it's often faster to go "all the way around" on the highway than to take the direct route. The roads are horrendous and you get to pass endless blocks of depressing dilapidated buildings. We finally got the hospital and then had to wait for a seemingly endless amount of time for a minivan to poke around an absolutely huge parking garage before being able to park. Then we had to make our way across the JH medical campus to the building where our appointment was. It was quite a process. But after it was all done, the meetings actually went well. I didn't get any sense of hubris from any of the people we met, which was surprising and refreshing. I met several pharmacists first, then a surgical fellow, then Dr. Diaz. Dr. Diaz was very amiable and pretty much reinforced and agreed with all the other advice I have had. He said they would be more than happy to treat me (obviously) and that now that I am "in the system" I can come back whenever I need to. I think the pain in the ass associated with getting to JH is enough to deter me from going there for treatment, at least initially. I believe I am going to stick with Dr. Kasamon, at least initially, and see how things go. I am meeting him again in a couple of days where I hope to work out some of the more practical matters of the treatment (when is blood work done, how long does it take, how am I going to deal with the portable IV pump, how will it be removed, etc. etc.). It was a federal holiday so I spent the rest of the day at home (but Emily had to go to work). Which meant I ate some lunch, got bored, and then fell asleep. (doh!) I'm up and moving around now though.
Tomorrow I hope to finally get back to work. I've been in a little bit of pain today for whatever reason. When I got out of bed and started moving a bit, around 4:00 I felt a bit of pain in my back/abdomen. The abdominal pain felt a bit like constipation but I do not actually think that is what it was. I took a Tylenol around 5:00, didn't feel a whole lot better around 6:00, then took 5mg oxycodone. That appears to have done the trick. So I'll be sure to have my full array of medications at my disposal tomorrow. But if I can get up and not feel sick to my stomach, I'm going to have a "normal" day, by god!
The surgeon at JH I talked to said that six weeks a good target for "normal" feeling recovery from such a big surgery. They were all not surprised to hear of my various gastrointestinal woes and said they should all clear up in time, but I'm not all that far out from the surgery yet. I'll buy that, I think!
Saturday was an entertaining day. Patrick and Minh Chau came over around 3PM. We just hung out and talked about stuff for a couple of hours, then we took a trip to Ellicott City. They had never been. We went to the Bean Hollow and had coffee/hot chocolate, and Emily and I had some food as well. Then we walked around a bit and looked at the crazy old buildings. Once home, we ate some of the chocolate cake the Emily and I made earlier in the day. We did the whole thing from scratch, even the icing! Never done that before. The cake was really really sweet. The icing is like marshmallow. Then we watched S12E01 of Top Gear (UK), which Pat had never seen. Don't know if he liked it as much as Emily and I do! By the end of the day I wanted to die because of all the sugar I had consumed. Other than that it was a very entertaining day. I was quite tired by the end of it. I think it was the first time I had gotten up at a decent hour (8:30 I think), actually done things, and not passed out in a "nap" for several hours in the middle of the day.
Sunday was not a good day. I just didn't feel quite right for most of the day, which kept me in bed. Then I felt nauseous again around 3:00 and took a phenagran. By about 3:30 I was feeling a good bit better and finally got up and moved around. It was altogether not a very memorable day. I was very cold as well. Even though the house is somewhat warm compared to where he had it last winter (we're keeping it between 67-70 when we're home), it still feels really cold. That's another reason I just hang out in the bedroom and fall asleep: there is a nice electric oil radiator that makes the room feel so snuggly. I think my stomach problems are compounded by staying sedentary so long. I need to get up and move around, get those stomach muscles doing something. It's like a catch-22 though.
Today, Monday, I had my appointment at Johns Hopkins with Dr. Diaz. The drive there was absolutely terrible. We went through the city rather than "all the way around" on the beltway. The thing is about driving up here: it's often faster to go "all the way around" on the highway than to take the direct route. The roads are horrendous and you get to pass endless blocks of depressing dilapidated buildings. We finally got the hospital and then had to wait for a seemingly endless amount of time for a minivan to poke around an absolutely huge parking garage before being able to park. Then we had to make our way across the JH medical campus to the building where our appointment was. It was quite a process. But after it was all done, the meetings actually went well. I didn't get any sense of hubris from any of the people we met, which was surprising and refreshing. I met several pharmacists first, then a surgical fellow, then Dr. Diaz. Dr. Diaz was very amiable and pretty much reinforced and agreed with all the other advice I have had. He said they would be more than happy to treat me (obviously) and that now that I am "in the system" I can come back whenever I need to. I think the pain in the ass associated with getting to JH is enough to deter me from going there for treatment, at least initially. I believe I am going to stick with Dr. Kasamon, at least initially, and see how things go. I am meeting him again in a couple of days where I hope to work out some of the more practical matters of the treatment (when is blood work done, how long does it take, how am I going to deal with the portable IV pump, how will it be removed, etc. etc.). It was a federal holiday so I spent the rest of the day at home (but Emily had to go to work). Which meant I ate some lunch, got bored, and then fell asleep. (doh!) I'm up and moving around now though.
Tomorrow I hope to finally get back to work. I've been in a little bit of pain today for whatever reason. When I got out of bed and started moving a bit, around 4:00 I felt a bit of pain in my back/abdomen. The abdominal pain felt a bit like constipation but I do not actually think that is what it was. I took a Tylenol around 5:00, didn't feel a whole lot better around 6:00, then took 5mg oxycodone. That appears to have done the trick. So I'll be sure to have my full array of medications at my disposal tomorrow. But if I can get up and not feel sick to my stomach, I'm going to have a "normal" day, by god!
The surgeon at JH I talked to said that six weeks a good target for "normal" feeling recovery from such a big surgery. They were all not surprised to hear of my various gastrointestinal woes and said they should all clear up in time, but I'm not all that far out from the surgery yet. I'll buy that, I think!
Friday, February 13, 2009
More information that you perhaps wanted...
So a rule if you're reading this blog is not to be squeamish about anything related to medical conditions.
On that note, I think I've been constipated for the last day or two. It's actually pretty hard to tell when you have "abstract" pain in your abdomen and back. Is it the normal chronic pain, or is it your gut telling you that it is brimming over? I haven't had a good bowel movement in about 1.5-2 days now, which in "normal" circumstances wouldn't be a big deal. But my bowels still haven't really returned to normal since being hacked apart and put back together. My stools have started to harden up, which I think may be slowing things down again. I've been told by my surgeon to switch from my no-fiber diet to a high-fiber diet (now that things have healed enough). I haven't done that yet, so that's the next step. I've been taking milk of magnesia and colace in the hopes of getting things moving normally, but no real luck so far. On Wednesday I had quite a bit of narcotic pumped through me (from the anesthesia and then to dull the pain from the incisions. I think I took about 30mg of oxycodone throughout the day on top of whatever they gave me in the anesthesia). Narcotics have a way of stopping you up. So perhaps that's what is going on too.
In any case, I didn't go to work yesterday, like I said, because I was trying to stay home and heal. Well later in the day I started to feel pretty shitty. It continued through to this morning, where I felt even shittier. I got out of bed and took a shower around 8:30 with the hopes of getting in to work around 10:30-11:00. Well, I took a phenagran (anti-nausea) and 20 minutes later took 2 tbsp of milk of magnesia, then ate a couple bites of a bagel of a bit later. Then I threw it all up. That was about the end of my ambitions for the day, and I just went back to bed to try and settle my stomach down. Which is unfortunate because I was actually look forward to going into work and to not continue to hemorrhage whatever leave I have left.
When I finally got back out of bed around 3pm I felt a little better. I managed to finish the bagel and it's still down, so that is good. I called Dr. Kasamon's office and asked them to fax whatever records they had to Hopkins. I decided that I'm going to go see Dr. Diaz after all, and I'll just bring what I have and whatever he has, well hopefully it's sufficient. I think it should be for an initial consultation. We'll see how it goes. Emily has this complication of her horse's feet are being done at the same time and she already told her farrier that she was going to be there, so I don't know what will happen with that.
Patrick and Minh Chau are coming up to visit tomorrow. I think we're planning to do nothing and just watch TV and play video games. It will be a grand old time.
Also: cars. Emily and I have been idly tossing around the idea of getting a new (well, most likely a used, but new to us) car for a while now. While my mom was up visiting, my car's coolant light came on and was making one hell of a racket. She thought it was normal, which is perhaps understandable since I have been driving it around. It was making some noise which didn't sound good, but I hadn't had it looked at. But when I went out to take a look, the coolant reservoir was basically empty and the noise was like 1000% worse. Turns out the water pump was giving up the ghost. I drove it to British American auto that morning to get the noise checked out, and about 1 mile away the water pump completely failed. The car was in the red by the time I got it parked. The quote for the repair was $640 (to replace the water pump and belts, and then to see what else might be wrong). This was unfortunately within my bounds of how much I was willing to spend. They fixed it, and didn't find any other major engine problems. So I now theoretically have a working vehicle again (though I haven't driven it since).
Still though, my cars has 120k miles and burns oil (and has a good deal of normal maintenance coming due). Emily's car has like 85k miles I think and is 10 years old. Neither of us trust our cars and neither of us have ever really owned a "nice" car. So the urge is there and strong to get another.
I very much like the 5-door hatchback body style, though it isn't all that popular in the U.S. I saw tons of cars like this in the U.K. Examples include: Honda Fit, Nissan Versa, Toyota Yaris, Mazda Mazda3 hatchback, Saab 9-3 wagon, and a couple of others. I also like the idea of nice comfortable heated seats, which typically means you're looking at leather upholstery. I dislike sunroofs/moonroofs. This is a very complicating factor because they are included on basically every model that is nice enough to have heated seats. Another issue is that most of the 5-door hatchbacks I listed there are the cheapest entry-level car made by the manufacturer. They get great gas mileage, but they are still "cheap" cars. If I buy another car, I want to be able to drive at highway speeds and not listen to 50dB of road noise while I'm doing it. It also makes it hard to get all of the options I would want.
I have found that the Mazda3 s Grand Touring hatchback model actually meets all of my requirements. It gets good gas mileage (29mpg highway), is available without a sunroof/moonroof, has heated leather seats. I don't know how the ride quality is, so I guess I'd just have to test drive one. But it is kind of expensive for what I was looking to spend. Another option is the venerable Honda Accord. It's not a hatchback, but it is a nice car and I know several people who own them and they are very nice. The V6 model, which while being more than I feel like I will need in an engine, has a lot of nice options standard. Problem with the Accord is that it's basically not available without a sunroof. I think my ceiling price is also about $20k, which puts new models of both of these out of my price range (not that I'm sure I want a new car anyway). And both of these models are very desirable and thus there usually isn't a huge static selection of used cars. I've been looking.
In any case, maybe in the coming months we'll get a nice shiny new car doodad. Then I won't feel like I'm taking some kind of chance by driving a few hundred miles away for a weekend excursion.
On that note, I think I've been constipated for the last day or two. It's actually pretty hard to tell when you have "abstract" pain in your abdomen and back. Is it the normal chronic pain, or is it your gut telling you that it is brimming over? I haven't had a good bowel movement in about 1.5-2 days now, which in "normal" circumstances wouldn't be a big deal. But my bowels still haven't really returned to normal since being hacked apart and put back together. My stools have started to harden up, which I think may be slowing things down again. I've been told by my surgeon to switch from my no-fiber diet to a high-fiber diet (now that things have healed enough). I haven't done that yet, so that's the next step. I've been taking milk of magnesia and colace in the hopes of getting things moving normally, but no real luck so far. On Wednesday I had quite a bit of narcotic pumped through me (from the anesthesia and then to dull the pain from the incisions. I think I took about 30mg of oxycodone throughout the day on top of whatever they gave me in the anesthesia). Narcotics have a way of stopping you up. So perhaps that's what is going on too.
In any case, I didn't go to work yesterday, like I said, because I was trying to stay home and heal. Well later in the day I started to feel pretty shitty. It continued through to this morning, where I felt even shittier. I got out of bed and took a shower around 8:30 with the hopes of getting in to work around 10:30-11:00. Well, I took a phenagran (anti-nausea) and 20 minutes later took 2 tbsp of milk of magnesia, then ate a couple bites of a bagel of a bit later. Then I threw it all up. That was about the end of my ambitions for the day, and I just went back to bed to try and settle my stomach down. Which is unfortunate because I was actually look forward to going into work and to not continue to hemorrhage whatever leave I have left.
When I finally got back out of bed around 3pm I felt a little better. I managed to finish the bagel and it's still down, so that is good. I called Dr. Kasamon's office and asked them to fax whatever records they had to Hopkins. I decided that I'm going to go see Dr. Diaz after all, and I'll just bring what I have and whatever he has, well hopefully it's sufficient. I think it should be for an initial consultation. We'll see how it goes. Emily has this complication of her horse's feet are being done at the same time and she already told her farrier that she was going to be there, so I don't know what will happen with that.
Patrick and Minh Chau are coming up to visit tomorrow. I think we're planning to do nothing and just watch TV and play video games. It will be a grand old time.
Also: cars. Emily and I have been idly tossing around the idea of getting a new (well, most likely a used, but new to us) car for a while now. While my mom was up visiting, my car's coolant light came on and was making one hell of a racket. She thought it was normal, which is perhaps understandable since I have been driving it around. It was making some noise which didn't sound good, but I hadn't had it looked at. But when I went out to take a look, the coolant reservoir was basically empty and the noise was like 1000% worse. Turns out the water pump was giving up the ghost. I drove it to British American auto that morning to get the noise checked out, and about 1 mile away the water pump completely failed. The car was in the red by the time I got it parked. The quote for the repair was $640 (to replace the water pump and belts, and then to see what else might be wrong). This was unfortunately within my bounds of how much I was willing to spend. They fixed it, and didn't find any other major engine problems. So I now theoretically have a working vehicle again (though I haven't driven it since).
Still though, my cars has 120k miles and burns oil (and has a good deal of normal maintenance coming due). Emily's car has like 85k miles I think and is 10 years old. Neither of us trust our cars and neither of us have ever really owned a "nice" car. So the urge is there and strong to get another.
I very much like the 5-door hatchback body style, though it isn't all that popular in the U.S. I saw tons of cars like this in the U.K. Examples include: Honda Fit, Nissan Versa, Toyota Yaris, Mazda Mazda3 hatchback, Saab 9-3 wagon, and a couple of others. I also like the idea of nice comfortable heated seats, which typically means you're looking at leather upholstery. I dislike sunroofs/moonroofs. This is a very complicating factor because they are included on basically every model that is nice enough to have heated seats. Another issue is that most of the 5-door hatchbacks I listed there are the cheapest entry-level car made by the manufacturer. They get great gas mileage, but they are still "cheap" cars. If I buy another car, I want to be able to drive at highway speeds and not listen to 50dB of road noise while I'm doing it. It also makes it hard to get all of the options I would want.
I have found that the Mazda3 s Grand Touring hatchback model actually meets all of my requirements. It gets good gas mileage (29mpg highway), is available without a sunroof/moonroof, has heated leather seats. I don't know how the ride quality is, so I guess I'd just have to test drive one. But it is kind of expensive for what I was looking to spend. Another option is the venerable Honda Accord. It's not a hatchback, but it is a nice car and I know several people who own them and they are very nice. The V6 model, which while being more than I feel like I will need in an engine, has a lot of nice options standard. Problem with the Accord is that it's basically not available without a sunroof. I think my ceiling price is also about $20k, which puts new models of both of these out of my price range (not that I'm sure I want a new car anyway). And both of these models are very desirable and thus there usually isn't a huge static selection of used cars. I've been looking.
In any case, maybe in the coming months we'll get a nice shiny new car doodad. Then I won't feel like I'm taking some kind of chance by driving a few hundred miles away for a weekend excursion.
Thursday, February 12, 2009
Day after the port
I stayed home from work today so that I could make sure I recovered well from surgery. I slept in, quite a bit. That was probably a good idea. I certainly feel less sore today than yesterday. But then I got pretty bored after being awake for only a couple of hours, and fell asleep again. Now I feel pretty crappy: too much sleep, I think.
I think I am going to cancel my appointment with Dr. Diaz at Johns Hopkins, mostly out of laziness on my part. I don't feel like going there all that much on Monday, and I haven't contacted any of my doctors to have my medical records faxed over there. I also don't have a copy of my most recent CT or PET scan, so I would have to go retrieve those myself tomorrow as well. I just don't have the energy or desire to deal with more health related things tomorrow and drive around and collate it all. I have quite a bit of the medical records that have been generated about me already, but I don't have an easy way to get them there ahead of time. I don't know, I really just don't have the energy. I am also not expecting anything exciting to come of the visit. There doesn't appear to be any real "super awesome" research or anything going on with this. Dr. Diaz is in charge of a clinical trial, which I took a look at. I might be eligible for it, but I might not (because of the Hodgkin's). It is a phase-II trial though, and I'm not sure I really want to be involved in a placebo controlled phase-II trial. And since the goal isn't "total cure", well I'm just not that interested. I'd rather just go with what has been shown to be effective.
I need to get back to work, I think I have exhausted my ability to sit around home doing nothing. I could probably find other things to do, but when you're sore and patched up... well there isn't much more to do.
Also, the wind has been hellacious over the last 24 hours. A huge piece of fascia board fell off the side of the house, again. It got mangled up this time too. I hate fascia board. This piece isn't getting replaced, since it's too big to buy another one to fit in my car and get it home. It doesn't seem to serve any purpose other than aesthetic and it's hard to get it actually attached to anything. Since this winter we've lost probably 25 feet of fascia board off various bits of the house and about 15-20 feet of siding off the very top-most part of the back of the house. We've got Tyvek showing. Some time I will have to get up there and put it back, with wood screws this time. (This particular piece has fallen down before, and been reattached with nails, which came out with it again.)
I think I am going to cancel my appointment with Dr. Diaz at Johns Hopkins, mostly out of laziness on my part. I don't feel like going there all that much on Monday, and I haven't contacted any of my doctors to have my medical records faxed over there. I also don't have a copy of my most recent CT or PET scan, so I would have to go retrieve those myself tomorrow as well. I just don't have the energy or desire to deal with more health related things tomorrow and drive around and collate it all. I have quite a bit of the medical records that have been generated about me already, but I don't have an easy way to get them there ahead of time. I don't know, I really just don't have the energy. I am also not expecting anything exciting to come of the visit. There doesn't appear to be any real "super awesome" research or anything going on with this. Dr. Diaz is in charge of a clinical trial, which I took a look at. I might be eligible for it, but I might not (because of the Hodgkin's). It is a phase-II trial though, and I'm not sure I really want to be involved in a placebo controlled phase-II trial. And since the goal isn't "total cure", well I'm just not that interested. I'd rather just go with what has been shown to be effective.
I need to get back to work, I think I have exhausted my ability to sit around home doing nothing. I could probably find other things to do, but when you're sore and patched up... well there isn't much more to do.
Also, the wind has been hellacious over the last 24 hours. A huge piece of fascia board fell off the side of the house, again. It got mangled up this time too. I hate fascia board. This piece isn't getting replaced, since it's too big to buy another one to fit in my car and get it home. It doesn't seem to serve any purpose other than aesthetic and it's hard to get it actually attached to anything. Since this winter we've lost probably 25 feet of fascia board off various bits of the house and about 15-20 feet of siding off the very top-most part of the back of the house. We've got Tyvek showing. Some time I will have to get up there and put it back, with wood screws this time. (This particular piece has fallen down before, and been reattached with nails, which came out with it again.)
Wednesday, February 11, 2009
Had a port put in and some lymph nodes excisionally biopsied
This is my first post, and it's going to be short and have no background information. Maybe that will come later.
I had outpatient surgery this morning at St. Agnes hospital. Dr. Somerville performed this surgery as well. He placed a port-a-cath (a "Power Port") on the left side of my chest, and while he was at it removed two cancerous (well, most likely) lymph nodes that were right there. Interestingly, I already had a huge scar in this exact place from my biopsy three years ago for the Hodgkin's Lymphoma. He went through the existing scar and said he'd "clean it up" so it would look better that it used to. Gotta love surgeons. This port is on the opposite side of my chest from the last one, which I had removed in November 2007.
I haven't actually looked at my chest yet and it's all covered in bandages, but it feels pretty normal (as normal as surgery can be I guess) and it should heal pretty fast. No stitches, just steristrips, so that's cool too.
I should be good to go to start chemotherapy in a week or so.
This coming week I am seeing one Dr. Diaz at John's Hopkins hospital for a consultation. On Wednesday I see Dr. Kasamon again, and unless Dr. Diaz and JH blow me out of the water, I am expecting to tell him that I'd like him (Dr. Kasamon, that is) to head up my treatment. I imagine we will then schedule a PET scan for later in the week and then start chemotherapy the following week. If I stay with Dr. Kasamon the first line treatment is going to be FOLFIRI+Bevacizumab (Avastin).
More later, perhaps.
I had outpatient surgery this morning at St. Agnes hospital. Dr. Somerville performed this surgery as well. He placed a port-a-cath (a "Power Port") on the left side of my chest, and while he was at it removed two cancerous (well, most likely) lymph nodes that were right there. Interestingly, I already had a huge scar in this exact place from my biopsy three years ago for the Hodgkin's Lymphoma. He went through the existing scar and said he'd "clean it up" so it would look better that it used to. Gotta love surgeons. This port is on the opposite side of my chest from the last one, which I had removed in November 2007.
I haven't actually looked at my chest yet and it's all covered in bandages, but it feels pretty normal (as normal as surgery can be I guess) and it should heal pretty fast. No stitches, just steristrips, so that's cool too.
I should be good to go to start chemotherapy in a week or so.
This coming week I am seeing one Dr. Diaz at John's Hopkins hospital for a consultation. On Wednesday I see Dr. Kasamon again, and unless Dr. Diaz and JH blow me out of the water, I am expecting to tell him that I'd like him (Dr. Kasamon, that is) to head up my treatment. I imagine we will then schedule a PET scan for later in the week and then start chemotherapy the following week. If I stay with Dr. Kasamon the first line treatment is going to be FOLFIRI+Bevacizumab (Avastin).
More later, perhaps.
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