It's snowing in Houston!
(of course the ground is too warm so nothing will stick, but it's still snow!)
10 December, 2008
06 December, 2008
Updates
Ok, here are a couple of posts--just keep reading until you hit old stuff...
Getting back to Normal
Life has pretty much gotten back to normal. (whatever that is) I’ve just been keeping myself busy, trying to catch up on what I think I missed out on for 6 months this year. It’s all self-imposed stuff, but that means I haven’t taken any time to put much up on the blog. I haven’t really been doing much that’s blog-worthy. (e.g. stuff that wouldn’t bore the crap out of you)
Health Stuff
Ok, I’ll keep this short. I wouldn’t keep posting about this stuff, but people ask.
I had my most recent follow-up last week and my cancer markers still look good. My oncologist seems to still be happy with things. I’m scheduled for more blood work and CT scans sometime in Jan/Feb.
I’ve been getting lots of compliments on the hair. It’s still fairly short, a slightly darker shade of brown and really soft. (and, perhaps a bit thinner) I’m not sure if people are commenting on it because it actually looks good or if it’s just because they were accustomed to seeing me bald. Or it could just be that people don’t know how to express “I’m glad you’re not sick and maybe even dying.”
In any case, I’m probably going to keep it like this for a while.
Traveling
In the last month, I’ve made two trips to Oklahoma with a total of over 2,500 miles driven. I also flew to Indiana for an extended weekend. I’m really glad I’ve had the opportunity to get in some travel and see some people I haven’t seen for a while. (even if I’m really starting to hate that drive to Oklahoma) It will be nice to be at home for the weekend.
But that only lasts for a little while. Soon the Christmas travel begins. Again, I love to travel, but it’s been a lot of driving lately and that gets kinda old.
Car
Ok, I’ve got to make a decision soon. I started to crave the Altima Coupe again. I was at the Nissan dealership the other day to get a faulty sensor replaced and I took the opportunity to get a close look at the ‘09 model. I even took a couple for a test drive. That V6 is damn fun to drive: 270 horses and the new continuously-variable transmission. That means that you can just put your foot down—it puts the RPM’s at 4K and keeps it there until you let off the gas.
I’m going to either buy this thing or forget about it. I’m giving myself until the end of next weekend to make a decision. Either way, at that point it’s done.
Getting back to Normal
Life has pretty much gotten back to normal. (whatever that is) I’ve just been keeping myself busy, trying to catch up on what I think I missed out on for 6 months this year. It’s all self-imposed stuff, but that means I haven’t taken any time to put much up on the blog. I haven’t really been doing much that’s blog-worthy. (e.g. stuff that wouldn’t bore the crap out of you)
Health Stuff
Ok, I’ll keep this short. I wouldn’t keep posting about this stuff, but people ask.
I had my most recent follow-up last week and my cancer markers still look good. My oncologist seems to still be happy with things. I’m scheduled for more blood work and CT scans sometime in Jan/Feb.
I’ve been getting lots of compliments on the hair. It’s still fairly short, a slightly darker shade of brown and really soft. (and, perhaps a bit thinner) I’m not sure if people are commenting on it because it actually looks good or if it’s just because they were accustomed to seeing me bald. Or it could just be that people don’t know how to express “I’m glad you’re not sick and maybe even dying.”
In any case, I’m probably going to keep it like this for a while.
Traveling
In the last month, I’ve made two trips to Oklahoma with a total of over 2,500 miles driven. I also flew to Indiana for an extended weekend. I’m really glad I’ve had the opportunity to get in some travel and see some people I haven’t seen for a while. (even if I’m really starting to hate that drive to Oklahoma) It will be nice to be at home for the weekend.
But that only lasts for a little while. Soon the Christmas travel begins. Again, I love to travel, but it’s been a lot of driving lately and that gets kinda old.
Car
Ok, I’ve got to make a decision soon. I started to crave the Altima Coupe again. I was at the Nissan dealership the other day to get a faulty sensor replaced and I took the opportunity to get a close look at the ‘09 model. I even took a couple for a test drive. That V6 is damn fun to drive: 270 horses and the new continuously-variable transmission. That means that you can just put your foot down—it puts the RPM’s at 4K and keeps it there until you let off the gas.
I’m going to either buy this thing or forget about it. I’m giving myself until the end of next weekend to make a decision. Either way, at that point it’s done.
That Festive Time of Year
I want to tell a little story. Bear with me here a bit.
When I first started my chemo treatments, my doctors wanted me to check into the hospital for the first week to make sure I was able to tolerate all the meds. Luckily, my system seemed to handle them very well. Actually, I felt really good for that first week. That means that I was bored as hell sitting in that tiny little hospital room.
So it didn’t take me long to talk the nurses into letting me leave the floor whenever I wanted—as long as I was back in time for treatments. On the third day—with IV in tow—I headed up to the pediatric floor of MD Anderson. They have a heck of a nice setup there. A full kitchen and dining area so parents can cook familiar meals for their kids. Computers with Internet access. A two-story gym with all sorts of toys. A “craft” room. They even have a classroom where kids can keep up with their schoolwork.
After playing catch with a little 4 year-old boy, I met Shannon. (not her real name) She was the cutest 12 year-old girl you’ve ever met. Tall and thin with the signature baby-smooth bald head that left no question as to whether she was a patient or guest. She had a type of bone cancer and she and her mom had temporarily moved from out of state for treatment. She recently had her right tibia (shin bone) removed and replaced with one from a cadaver. At the time, she was in the middle of yet another round of chemo.
But, like a lot of kids in that situation, she was tough. After talking to her a bit, I could tell that she knew exactly what was going on. She knew things were going to be rough for a while. She even seemed to have processed the idea that her situation might not have a positive outcome. But instead of shrinking into a well of self-pity (as she had every right to—her doctors were starting to think that her body wasn’t accepting the new bone and that they would need to try the surgery again) she was up and doing crafts with her mom and helping to plan how to juggle the rest of the family’s schedule.
And Shannon was independent. When she wanted something to drink, she got up and got it herself. That may not sound like much, but realize that she was on crutches with a big IV pole to drag around. That was an impressive balancing act.
While her mom was in the kitchen area cooking some dinner, we were talking and she said that she really missed playing dominoes. As well-stocked as that floor was, there were no dominoes to be found. So, while Shannon and her mom ate some dinner, I snuck out and found the last box hiding in the back of a gift shop.
You should have seen her face light up when I walked back in with that box. We spent the next couple of hours playing dominoes with her mom. I finally had to leave to start my treatments, but for those couple of hours it seemed like it took a little of the burden off her mind. Maybe that’s just what I wanted to see. But if I was able to put a smile on her face and help her have a few laughs with her mom, that seems like a well-spent effort.
The Child’s Play banner is back up. You know what to do.
When I first started my chemo treatments, my doctors wanted me to check into the hospital for the first week to make sure I was able to tolerate all the meds. Luckily, my system seemed to handle them very well. Actually, I felt really good for that first week. That means that I was bored as hell sitting in that tiny little hospital room.
So it didn’t take me long to talk the nurses into letting me leave the floor whenever I wanted—as long as I was back in time for treatments. On the third day—with IV in tow—I headed up to the pediatric floor of MD Anderson. They have a heck of a nice setup there. A full kitchen and dining area so parents can cook familiar meals for their kids. Computers with Internet access. A two-story gym with all sorts of toys. A “craft” room. They even have a classroom where kids can keep up with their schoolwork.
After playing catch with a little 4 year-old boy, I met Shannon. (not her real name) She was the cutest 12 year-old girl you’ve ever met. Tall and thin with the signature baby-smooth bald head that left no question as to whether she was a patient or guest. She had a type of bone cancer and she and her mom had temporarily moved from out of state for treatment. She recently had her right tibia (shin bone) removed and replaced with one from a cadaver. At the time, she was in the middle of yet another round of chemo.
But, like a lot of kids in that situation, she was tough. After talking to her a bit, I could tell that she knew exactly what was going on. She knew things were going to be rough for a while. She even seemed to have processed the idea that her situation might not have a positive outcome. But instead of shrinking into a well of self-pity (as she had every right to—her doctors were starting to think that her body wasn’t accepting the new bone and that they would need to try the surgery again) she was up and doing crafts with her mom and helping to plan how to juggle the rest of the family’s schedule.
And Shannon was independent. When she wanted something to drink, she got up and got it herself. That may not sound like much, but realize that she was on crutches with a big IV pole to drag around. That was an impressive balancing act.
While her mom was in the kitchen area cooking some dinner, we were talking and she said that she really missed playing dominoes. As well-stocked as that floor was, there were no dominoes to be found. So, while Shannon and her mom ate some dinner, I snuck out and found the last box hiding in the back of a gift shop.
You should have seen her face light up when I walked back in with that box. We spent the next couple of hours playing dominoes with her mom. I finally had to leave to start my treatments, but for those couple of hours it seemed like it took a little of the burden off her mind. Maybe that’s just what I wanted to see. But if I was able to put a smile on her face and help her have a few laughs with her mom, that seems like a well-spent effort.
The Child’s Play banner is back up. You know what to do.
23 October, 2008
Yep, that seems about right
Ok, so I promise that this blog will migrate away from my health-related, depressing posts very, very soon...
I read this article in the NY Times yesterday. Apparently the FDA is investigating if the drug I take for my Crohn's (and other drugs in that class) causes a higher rate of cancer among younger patients.
I'd never given much thought as to what caused my cancer. In general, the medical community doesn't know what causes it. There are a couple of lifestyle factors that they believe can contribute (being overweight and a sedentary lifestyle), but other than that they have no idea.
I can't say that I didn't give a little thought to my Remicade possibly being a factor. But it's the only thing I've found that keeps my fistulas in check.
Anyway, I'm not sure how I feel about this. What's done is done. Maybe it was a factor, maybe not. But unless something else comes along, I'll be on this drug for a long time yet. I guess it's time to start aggressively searching for alternative treatments.
I read this article in the NY Times yesterday. Apparently the FDA is investigating if the drug I take for my Crohn's (and other drugs in that class) causes a higher rate of cancer among younger patients.
I'd never given much thought as to what caused my cancer. In general, the medical community doesn't know what causes it. There are a couple of lifestyle factors that they believe can contribute (being overweight and a sedentary lifestyle), but other than that they have no idea.
I can't say that I didn't give a little thought to my Remicade possibly being a factor. But it's the only thing I've found that keeps my fistulas in check.
Anyway, I'm not sure how I feel about this. What's done is done. Maybe it was a factor, maybe not. But unless something else comes along, I'll be on this drug for a long time yet. I guess it's time to start aggressively searching for alternative treatments.
20 October, 2008
Boring...
I feel bad because I haven't put anything up for a while. Unfortunately there hasn't been anything too interesting that's happened over the last couple of weeks. Let's see what un-interesting things I can dig up... (hey, I'm sitting at MD Anderson and it's about 2 hours until my next test, so I need *something* to do)
- I'm feeling pretty much back to normal. I'd say 90% or so. Now I just need a way to deal with all the fatigue I've had for the past couple of years. I think I've got a possible solution, but I'll wait to blog about that until I can confirm it.
- I've been spending a lot more time with friends here in Houston. It's one of the things that I promised myself that I'd do. It's been cool, but makes for a heck of a schedule some days.
- I've got at least 4 trips (possibly 5) scheduled before the end of the year and not a single one of them are really planned yet. I need to get on that. But that also means if I haven't said something, I probably won't be by to see you this year. Sorry folks. (or "congratulations"--depending on how you see it...)
- I learned that if you don't play Rock Band for a long time, your hand hurts like heck when you try.
- I finally got the breakdown from my insurance company, so I can start the house repairs. One of the cool things is that they are paying to have my house completely re-roofed. I only lost 1/30th of the shingles, but they are paying to have the whole thing redone. W00t! (that makes for a good selling point)
Yeah, that's not much. Like I said, the fatigue really sucks and slows-down any progress I'd like to be making during the week.
But, like I've said before, if that's my biggest gripe then life just can't be too bad.
- I'm feeling pretty much back to normal. I'd say 90% or so. Now I just need a way to deal with all the fatigue I've had for the past couple of years. I think I've got a possible solution, but I'll wait to blog about that until I can confirm it.
- I've been spending a lot more time with friends here in Houston. It's one of the things that I promised myself that I'd do. It's been cool, but makes for a heck of a schedule some days.
- I've got at least 4 trips (possibly 5) scheduled before the end of the year and not a single one of them are really planned yet. I need to get on that. But that also means if I haven't said something, I probably won't be by to see you this year. Sorry folks. (or "congratulations"--depending on how you see it...)
- I learned that if you don't play Rock Band for a long time, your hand hurts like heck when you try.
- I finally got the breakdown from my insurance company, so I can start the house repairs. One of the cool things is that they are paying to have my house completely re-roofed. I only lost 1/30th of the shingles, but they are paying to have the whole thing redone. W00t! (that makes for a good selling point)
Yeah, that's not much. Like I said, the fatigue really sucks and slows-down any progress I'd like to be making during the week.
But, like I've said before, if that's my biggest gripe then life just can't be too bad.
05 October, 2008
Quick Weekend Update
Not much going on this weekend. I still need to get a lot of my strength and endurance back. But I can't say that I've reached too hard for that goal over the last couple of days--I've spent quite a bit of it on the couch catching up on the TV and movies I've missed over the last month or so.
Not Your Typical Halloween Basket
It's nice to finally be able to put this basket 'o meds away. This was my side-effect-management stash.
Getting in the Spirit of the Holidays
Friday night, I did step out with some friends for a cool little thing put on by our local NPR radio station.
Sitting on an open-air theater with the skyscrapers of downtown Houston as a backdrop, they showed the silent film 'Nosferatu' with live music accompaniment by an Austin band. It was definitely cool.
Not Your Typical Halloween Basket
It's nice to finally be able to put this basket 'o meds away. This was my side-effect-management stash.
Getting in the Spirit of the Holidays
Friday night, I did step out with some friends for a cool little thing put on by our local NPR radio station.
Sitting on an open-air theater with the skyscrapers of downtown Houston as a backdrop, they showed the silent film 'Nosferatu' with live music accompaniment by an Austin band. It was definitely cool.
01 October, 2008
Probably. Maybe. We mostly think so.
Ok, so here's the slightly more detailed version of the previous post...
They *think* I'm cancer-free. Up until this point, I've been a textbook case of testicular cancer. My blood work, treatment and recovery has been exactly as the doctors have learned to expect after successfully treating thousands of cases of my cancer.
Where I diverged from being a typical case is my AFP count. If you remember, that's the protein they use to diagnose how much cancer is in my system.
In a typical adult, there is 0 to 5 ng/mL of AFP found. When I started all of this, my count was just under 1,000. But ever since round 2 of chemo, it's been floating around 10 ng/mL.
Normally this indicates that there is still some active cancer left. However, since that number hasn't moved during the last two rounds of chemo and the biopsy from surgery showed that the thing they removed from my lymph node was a mature teratoma (most likely benign), my oncologist believes that the slightly elevated AFP is normal for me. (much like someone who naturally has low blood pressure or has a normal internal body temperature lower than 98.6)
There is also a slight chance that my Crohn's is causing the extra AFP to be produced. It's been shown that Colitis (a very similar condition) can cause this.
So, the end result is this: they are pretty sure I'm cured. But the AFP number means that I don't have a 100% diagnosis. They will be re-testing my blood and giving me CT scans every few months for the next couple of years to make sure. (which was the plan in any case) If the AFP continues not to rise, we'll know that's normal for me.
They *think* I'm cancer-free. Up until this point, I've been a textbook case of testicular cancer. My blood work, treatment and recovery has been exactly as the doctors have learned to expect after successfully treating thousands of cases of my cancer.
Where I diverged from being a typical case is my AFP count. If you remember, that's the protein they use to diagnose how much cancer is in my system.
In a typical adult, there is 0 to 5 ng/mL of AFP found. When I started all of this, my count was just under 1,000. But ever since round 2 of chemo, it's been floating around 10 ng/mL.
Normally this indicates that there is still some active cancer left. However, since that number hasn't moved during the last two rounds of chemo and the biopsy from surgery showed that the thing they removed from my lymph node was a mature teratoma (most likely benign), my oncologist believes that the slightly elevated AFP is normal for me. (much like someone who naturally has low blood pressure or has a normal internal body temperature lower than 98.6)
There is also a slight chance that my Crohn's is causing the extra AFP to be produced. It's been shown that Colitis (a very similar condition) can cause this.
So, the end result is this: they are pretty sure I'm cured. But the AFP number means that I don't have a 100% diagnosis. They will be re-testing my blood and giving me CT scans every few months for the next couple of years to make sure. (which was the plan in any case) If the AFP continues not to rise, we'll know that's normal for me.
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