We haven't been out to see a lot of movies lately. First there's the issue of being new parents. We took Dylan a couple of times to a show at the Cerrito (a theatre that has inherited some of the attributes of the old Parkway, with its couches and beer and pizza, although that has since closed but is struggling to reopen in a new location), where once every other week they have shows that welcome babies. The idea is that it's okay if your baby starts screaming in the middle of the movie, since you're surrounded by a bunch of other people who are either in the same position, or at least can understand. I think the last time we went may have been for the first half of the last Harry Potter movie. He actually sat there and watched the movie for a large part of it. Dylan has, however, outgrown this activity. Not only is I believe the official cutoff at 12 months, but I don't think he would just sit still long enough anymore. He'd probably be roaming about all over the theatre. And given that it's in the early evening, he'd probably be tired and grumpy.
We recently started in theory doing a babysitting swap with another couple. It's a pretty convenient arrangement. Let's say we want to go out. One of the people from other couple comes over to our house, hopefully late enough that Dylan has already been put to sleep. Then we go out for a few hours. The person at our house doesn't in the common case have to do anything, assuming that Dylan doesn't wake up (and can't get himself back to sleep).
In practice, we just did it once for them, and then my health started going downhill fast, so we kind of stalled. I was coughing at least somewhat almost all of the time, which didn't really make for a very good movie going experience. And overall I felt just bad enough that I didn't really feel like going out, even without having to pay for child care.
Now the coughing has subsided, but I'm mildly nervous about being in an enclosed space for 2 hours with so many strangers, given my weakened immune system. Isn't it always in a movie theatre that they illustrate some disease spreading in bio disaster movies? Maybe I'm being overly paranoid, esp. if we're now considering having a meal out at a restaurant. Regardless, it had been many months since we had seen any movie in a theatre.
Our friend Kim is the assistant manager at a movie theatre in downtown Berkeley. She volunteered that if there was a movie we wanted to see, she'd be willing to do a private screening for us. The theatre normally doesn't open until the evening during the week, but she was willing to come into work a few hours early and load up a film on the projector for us. So that's what we did today. My Mom stayed home to take care of Dylan, and we saw The Artist. It was great to get out and see a movie. Thank you Kim!
And since the rain has subsided, and it wasn't too cold today, and the ride between our house and downtown is fairly short and relatively flat, we decided to bike there. Normally this wouldn't be a big deal -- it's the main way we would travel for such a trip. I hadn't been on my bike at all in a few months due to my health, so it was a bit of an experiment. I did get a little more winded than seemed appropriate on the few tiny uphills we traversed on the way back. This may have, however, simply be the result of being out of shape from lack of exercise, as well as from losing a lot of muscle mass in my legs. Seeing the movie was great by itself, but being able to bike again was such an added bonus. Life felt normal again.
Except for the part about there being nobody else in the theatre. That felt a little bit weird. Somehow we still felt compelled to whisper if we wanted to say anything.
Tuesday, March 20, 2012
The end of an era
And not just the transition from winter to spring.
Every Monday night we put out our dirty cloth diapers for pickup Tuesday morning, along with a delivery of fresh clean ones. Today was the last time, pickup only, no delivery.
We had a few reasons for using cloth diapers. The main one being that I think it's better for the environment. Although that's somewhat of a gut feeling. It's very difficult to actually prove that statement one way or the other, because you have to make so many assumptions. My feeling is that it's probably better if you're using a diaper service, due to the economies of scale, but I suspect if you're using your own water and energy to wash them (esp. if you don't have a front loading washer), that you're probably better off with disposables. And although plenty of people do it, I think given all of the things you need to deal with as a new parent that you're kind of crazy to add washing dirty diapers to the mix.
There's also the theory that disposable diapers have gotten *too* good. For any of you that haven't changed a diaper in a number of years, you might be surprised at how ridiculously absorbent they've gotten. They expand like crazy when inundated with absurd amounts of liquid, but they don't actually get wet. It's pretty freaky. Anyway, the theory goes that because babies don't actually feel the wetness, they don't get the feedback needed to learn what's going on as easily, and you end up toilet training later. Although, as my Mom has pointed out, early toilet training is a mixed blessing. There's a wonderful convenience of diapers, and having to suddenly deal with finding a bathroom for your toddler every moment he needs it (which inevitably will be immediately after leaving some place that had an easy bathroom, like your house) doesn't sound like it's necessarily the best tradeoff.
The cost was fairly similar (when compared to an unbleached, unscented disposable brand like Seventh Generation) when we started out, but over time cloth diapers became relatively much more expensive. The issue is that we're using less, but to a first order you pay for the service, not the number of diapers. You only save $0.50 for having 10 less diapers a week delivered. And we weren't using exclusively cloth anyway. We've always used a disposable at night, and as we've wanted to be able to be out of the house for longer periods of time without having to change Dylan, we started using more disposables during the day as well. I'd imagine we're way in the minority for sticking with it for 17 months. Add the fact that Lorien is still breast feeding, and probably even more so. (Although there's perhaps a bit of a correlation.)
So we decided that it was time to simplify our lives somewhat, especially given the unexpected complication of dealing with cancer. (Okay, it was mostly Lorien that decided, but I went along without protesting.) It's part of a series of small steps at simplifying things in our life. We started composting soon after moving to our house in 2005, but back then the City of Berkeley wasn't yet doing it. When they did start a number of years later, we still kept it up. But we were somewhat picky, and didn't want any animal products (except for egg shells) in our garden compost. So now we had two different composts, city compost and garden compost. Lorien's been bugging me about the absurdity for a while, but finally declared a few weeks back that everything was going into city compost. Which I suppose I have to reluctantly admit makes sense, especially when neither of us has had much time for gardening. Not to mention the fact that as Berkeley residents we can get compost for free once a month if we're willing to pick it up.
Not that our waste stream is yet entirely simplified. There has been another recent casualty in the waste separation, though. Given the philosophy that re-use is better than recycle, we also save some items for eventual donation to The East Bay Depot for Creative Reuse. That included empty egg cartons. I gather that they're in high demand by schoolteachers. Nevertheless, the last time I went to drop off a lot (and I mean a lot -- they pile up a bit), they said they already had too many. Lorien thought I was crazy, but I responded by putting an ad on craigslist. I was astounded at how many responses I got. Indeed, egg cartons are in high demand. Regardless, the refusal by the East Bay Depot led to another item not making the cut. Now the egg cartons go into mixed paper recycling.
But our system is still a bit complicated to explain to visitors. There's compost (no longer city vs. garden); mixed paper; mixed recycling (generally glass and metal, but also plastic but only if it's #1 or #2 and narrow neck only); and landfill. And even though egg cartons now go to recycling, we're still saving corks and empty CO2 cartridges (even though they never seem to believe me that they're not all N2O cartridges) for the East Bay Depot. And empty strawberry plastic bins get turned in at the Farmers' Market.
Geez, sometimes we're such hippies. I guess there's a reason we live in Berkeley.
Every Monday night we put out our dirty cloth diapers for pickup Tuesday morning, along with a delivery of fresh clean ones. Today was the last time, pickup only, no delivery.
We had a few reasons for using cloth diapers. The main one being that I think it's better for the environment. Although that's somewhat of a gut feeling. It's very difficult to actually prove that statement one way or the other, because you have to make so many assumptions. My feeling is that it's probably better if you're using a diaper service, due to the economies of scale, but I suspect if you're using your own water and energy to wash them (esp. if you don't have a front loading washer), that you're probably better off with disposables. And although plenty of people do it, I think given all of the things you need to deal with as a new parent that you're kind of crazy to add washing dirty diapers to the mix.
There's also the theory that disposable diapers have gotten *too* good. For any of you that haven't changed a diaper in a number of years, you might be surprised at how ridiculously absorbent they've gotten. They expand like crazy when inundated with absurd amounts of liquid, but they don't actually get wet. It's pretty freaky. Anyway, the theory goes that because babies don't actually feel the wetness, they don't get the feedback needed to learn what's going on as easily, and you end up toilet training later. Although, as my Mom has pointed out, early toilet training is a mixed blessing. There's a wonderful convenience of diapers, and having to suddenly deal with finding a bathroom for your toddler every moment he needs it (which inevitably will be immediately after leaving some place that had an easy bathroom, like your house) doesn't sound like it's necessarily the best tradeoff.
The cost was fairly similar (when compared to an unbleached, unscented disposable brand like Seventh Generation) when we started out, but over time cloth diapers became relatively much more expensive. The issue is that we're using less, but to a first order you pay for the service, not the number of diapers. You only save $0.50 for having 10 less diapers a week delivered. And we weren't using exclusively cloth anyway. We've always used a disposable at night, and as we've wanted to be able to be out of the house for longer periods of time without having to change Dylan, we started using more disposables during the day as well. I'd imagine we're way in the minority for sticking with it for 17 months. Add the fact that Lorien is still breast feeding, and probably even more so. (Although there's perhaps a bit of a correlation.)
So we decided that it was time to simplify our lives somewhat, especially given the unexpected complication of dealing with cancer. (Okay, it was mostly Lorien that decided, but I went along without protesting.) It's part of a series of small steps at simplifying things in our life. We started composting soon after moving to our house in 2005, but back then the City of Berkeley wasn't yet doing it. When they did start a number of years later, we still kept it up. But we were somewhat picky, and didn't want any animal products (except for egg shells) in our garden compost. So now we had two different composts, city compost and garden compost. Lorien's been bugging me about the absurdity for a while, but finally declared a few weeks back that everything was going into city compost. Which I suppose I have to reluctantly admit makes sense, especially when neither of us has had much time for gardening. Not to mention the fact that as Berkeley residents we can get compost for free once a month if we're willing to pick it up.
But our system is still a bit complicated to explain to visitors. There's compost (no longer city vs. garden); mixed paper; mixed recycling (generally glass and metal, but also plastic but only if it's #1 or #2 and narrow neck only); and landfill. And even though egg cartons now go to recycling, we're still saving corks and empty CO2 cartridges (even though they never seem to believe me that they're not all N2O cartridges) for the East Bay Depot. And empty strawberry plastic bins get turned in at the Farmers' Market.
Geez, sometimes we're such hippies. I guess there's a reason we live in Berkeley.
Monday, March 19, 2012
Hair today, Ne'er tomorrow
After a bunch of days of cold, wet weather, the sun is back out. So I'm back to sitting on the front porch. I don't mind the rain, though. We've had a very dry winter, and as our water supply depends on snowpack in the Sierra, we really need it. And it made for some epic skiing and snowboarding for some people (I'm looking at you, Brendan), even if we've had to miss out on that this year.
Most of the past few days we've spent hanging around the house, trying to get out for at least one excursion with Dylan (sometimes squeezed in between the rains), so that he doesn't (and we don't) go too stir crazy. Yesterday, our excursion was a trip to Telegraph Ave. (and Willard Park for Dylan), including a visit to the Berkeley Hat Company.
It's an awesome store. A fairly tiny shop, but packed into their minimal square footage is a vast menagerie of hats. Big hats, small hats, paper hats, furry hats, serious hats, silly hats, and everything in between. Given that it's very probable that all of my hair will be falling out sometime in the next few weeks, and that I don't think I'm the kind of guy that will look good with a shaved head, I wanted to make sure that I was all set in the hat department. I have a number of hats from them already, including a wool fedora for cooler weather; and a straw fedora for warmer, sunnier weather. I was looking for something in between. Lighter than wool, heavier (and less delicate) than straw; more fashion than function -- sun protection not being the main purpose.
I went in there thinking I wanted a purple fedora. I had found some online, although many of those were either a bit too girly, or too pimpin'. And fit is such an important factor, that I'm not sure if buying a hat online is the best idea regardless.
I didn't see anything in purple that I liked, but I did end up with this awesome one that's blue, with a red band. It's probably a more versatile color than purple anyway. I thought about buying a purple beret while I was there, but for some reason all of the purple ones were just a bit too small, despite the fact that they were all supposed to be the same size, and some of the other colors fit me perfectly. And when am I really going to wear a beret, after all?
While I was there, I also happened to spot this amazing wide brimmed panama hat. It's not at all what I came in looking for, but a sun hat that provides enough protection that I can get by without sunscreen and not burn my face and neck is something that I could use. Plus, it fit me perfectly, so I decided to get it as well, even though it was kind of pricey. What sealed the deal was that they were willing to put a leather chin strap on it for only $5, and they did a pretty good job. Now I can use it for serious sun protection even in a windy environment. Not that I'm sure that I want to be taking a $60+ hat to Burning Man. Not that I'm sure that I'm ever even going to go to Burning Man again.
I'm starting to build up a fairly decent hat collection now, and most of them are from the Berkeley Hat Company. I think I may be up to 8 just from this one store -- including serious hats (the 3 fedoras, the panama hat, and a newsboy cap); silly hats (a silver Mad Hatter'ish top hat, and a purple glittering witch's hat); and one (a bowler) which I suppose is technically a serious hat, but is kind of silly in a context of being worn today. But there's still room for more -- I can see sometime wanting to own a formal top hat. And maybe someday I'll get that beret after all.
They also had some really cute toddler sized knit hats done like various animals, but like the rain boots that Lorien recently convinced me not to buy on clearance, it's probably a better idea to wait until next fall before we buy any cold or wet weather gear for our fast growing little boy. Not that we've had any problem in the past finding a .. really .. good .. selection .. of .. cute .. hats .. for .. Dylan. Or just outfitting him in one of Mommy's or Daddy's hats.
Most of the past few days we've spent hanging around the house, trying to get out for at least one excursion with Dylan (sometimes squeezed in between the rains), so that he doesn't (and we don't) go too stir crazy. Yesterday, our excursion was a trip to Telegraph Ave. (and Willard Park for Dylan), including a visit to the Berkeley Hat Company.
It's an awesome store. A fairly tiny shop, but packed into their minimal square footage is a vast menagerie of hats. Big hats, small hats, paper hats, furry hats, serious hats, silly hats, and everything in between. Given that it's very probable that all of my hair will be falling out sometime in the next few weeks, and that I don't think I'm the kind of guy that will look good with a shaved head, I wanted to make sure that I was all set in the hat department. I have a number of hats from them already, including a wool fedora for cooler weather; and a straw fedora for warmer, sunnier weather. I was looking for something in between. Lighter than wool, heavier (and less delicate) than straw; more fashion than function -- sun protection not being the main purpose.
I didn't see anything in purple that I liked, but I did end up with this awesome one that's blue, with a red band. It's probably a more versatile color than purple anyway. I thought about buying a purple beret while I was there, but for some reason all of the purple ones were just a bit too small, despite the fact that they were all supposed to be the same size, and some of the other colors fit me perfectly. And when am I really going to wear a beret, after all?
While I was there, I also happened to spot this amazing wide brimmed panama hat. It's not at all what I came in looking for, but a sun hat that provides enough protection that I can get by without sunscreen and not burn my face and neck is something that I could use. Plus, it fit me perfectly, so I decided to get it as well, even though it was kind of pricey. What sealed the deal was that they were willing to put a leather chin strap on it for only $5, and they did a pretty good job. Now I can use it for serious sun protection even in a windy environment. Not that I'm sure that I want to be taking a $60+ hat to Burning Man. Not that I'm sure that I'm ever even going to go to Burning Man again.
They also had some really cute toddler sized knit hats done like various animals, but like the rain boots that Lorien recently convinced me not to buy on clearance, it's probably a better idea to wait until next fall before we buy any cold or wet weather gear for our fast growing little boy. Not that we've had any problem in the past finding a .. really .. good .. selection .. of .. cute .. hats .. for .. Dylan. Or just outfitting him in one of Mommy's or Daddy's hats.
Saturday, March 17, 2012
Mom, Music, and insoMnia
Sorry, I couldn't come up with a legitimate third word to continue the alliteration.
My Mom arrived a few days ago to visit for a couple of weeks. The visit had actually been planned since before I got diagnosed, but she decided to come early after it turned out I had cancer. My Dad will also be coming, mid next week. It's good to have her here. And she's getting an opportunity to see how much Dylan has grown since Thanksgiving. Skype is nice, but it's not quite the same as being there.
This past week was the last session of a music program that Dylan has been participating in, Music Together. It's a nationwide franchise of music classes for infants, toddlers, and preschoolers. I have to admit that I was a bit skeptical of it at first. Maybe part of it is that I'm reluctant in the long term for Dylan's life to be too overly scheduled with organized activities -- I want him to have plenty of open, creative free time to play and do whatever he wants to and just be a kid. And maybe part of it is that although music is a part of my life, it's not exactly the kind of sitting around singing campfire type of songs that I pictured the music class might be. But it turned out that I really enjoyed it. It's very participatory, it's very active, it's got a decent amount of variety, and it was a lot of fun. Each 10 week session has a set of songs, and you get an accompanying CD and songbook with lyrics and sheet music. And the music is actually kind of interesting -- I genuinely like listening to the CD (and playing some of it on the piano). And they cleverly set it up so that if you want to repeatedly sign up, it's not just the same old thing, since the next session will have an entirely new set of songs. I think there are something like 9 different song books, so you could if you wanted to sign your kid up for a few years straight before repeating. Anyway, if anyone out there has a young child, and some interest in music, I definitely recommend it.
Although Lorien was the one that found the program and convinced me that we should sign up, going to Music Together with Dylan had been my thing. We picked a time slot early(ish) in the morning so I could go before work. And I liked having a regular activity with Dylan and other kids -- as the primary caregiver, Lorien had a lot of other opportunities for that that I didn't. But it was getting a little bit harder on me as the weeks progressed. Some of it is pretty physical (dancing around, and sometimes having to pick up Dylan as needed depending on his mood), and my energy level was gradually decreasing. Not to mention that I was downing antacids and cough drops like crazy and especially trying to be in a reasonably normal condition with as little coughing as possible for the classes. Then I had to miss one week because I had a cold, and soon after that came a whole series of instances of Lorien going instead of me. I think one week was the CT scan, then the next week was the biopsy, and then by the next week I was in the hospital getting chemo. It was especially disappointing because it sounded like Dylan was getting more into it and getting more out of the class as time progressed. In the time slot we were in, he was I think the second youngest kid in the class, and although sometimes he was into the music, often his attention seemed elsewhere. I think the initial timing was especially poor because he had started to walk very shortly before the first music class, so in the beginning he was often more interested in running around the room than sitting down in a circle, if that's what we were trying to do.
But I really wanted to go with him to one more session before it was over. So yesterday I did, and took my Mom along as well. It was perhaps a poor judgement call and a little bit risky -- my immune system is compromised, and a large gathering of toddlers is a bit of a collection of germs just waiting to be spread. Hopefully I won't get sick and regret it. I did very much enjoy going and participating. And as with our excursion to the food trucks the previous week, it injected a bit of normalcy back into my life. I was fortunate to be feeling pretty good for the class (even if I overdid it a bit once tossing Dylan around and then had to rest somewhat), which was good timing because I was feeling pretty damn bad later in the day. Nevertheless, I think we'll be skipping the next couple of sessions. I do hope that we can do it again once I get better, and that Dylan will be able to get even more out of it once he's a little older.
I figured there was no way that I was going to have the energy for a 9:30 AM class (yeah, I know, plenty of you are at work way before that and probably think I sound pretty damn lazy considering that time to be "early") unless I got something resembling a decent night's sleep. So, the night before (right after my previous blog post), I tried taking some Ambien, which had been my previous sleep remedy for occasional use. In better days I could get by with only 5 mg, or sometimes even 2.5 mg. I started with 5 mg, but after a while concluded it wasn't doing much, so upped it to 10 mg. Thankfully, it did the trick, I got to sleep, and made it to class. Hopefully as long as I reserve it only on an as needed basis, and not for regular use, it will continue to have some effect.
Which meant that I took nothing the next night. And it was hours before I got to sleep. I'm thinking that maybe it's time to get a clip on reading light so that I can easily read in bed into the wee hours without disturbing Lorien.
I'm also wondering if maybe my policy with respect to food might need some tweaking. Back when I thought I had GERD, I tried very hard to arrange my schedule so that I didn't eat anything within 2 to 3 hours of going to sleep. And I've been trying to keep that up. But I've found myself repeatedly lying in bed, unable to sleep, thinking of food, and what I'm going to eat the next day. Last night I finally gave in and got up out of bed and had a few pieces of bread and butter. (OMG have I mentioned how amazing the rye bread from the Cheeseboard is? Not at all like New York deli Jewish rye, which I think is what they're trying for, but delicious nevertheless. But I digress...) Lying down back in bed right after eating did indeed have a few negative effects, but they were actually fairly minimal. Did it ultimately help me get to sleep? Hard to say. I think I ate around 1:30 AM and finally got to sleep sometime a little after 2:00 AM. Not great, but better than being up until 3 or 4. And I didn't get up again until Dylan awoke a little bit after 7. Of course, 5 hours sleep is pretty damn inadequate, especially for a body under so much stress and trying to heal. I think naps are going to have to be a regular part of my schedule for the forseeable future. But the bottom line of all of this is that the next time I'm at all hungry at night, I'm *not* going to do nothing because it's too close to bedtime. I'm going to eat something.
Come to think of it, I'm hungry right now. Time for some dessert. I think I'm in the mood for some form of chocolate. You know, doctor's orders. :)
My Mom arrived a few days ago to visit for a couple of weeks. The visit had actually been planned since before I got diagnosed, but she decided to come early after it turned out I had cancer. My Dad will also be coming, mid next week. It's good to have her here. And she's getting an opportunity to see how much Dylan has grown since Thanksgiving. Skype is nice, but it's not quite the same as being there.
This past week was the last session of a music program that Dylan has been participating in, Music Together. It's a nationwide franchise of music classes for infants, toddlers, and preschoolers. I have to admit that I was a bit skeptical of it at first. Maybe part of it is that I'm reluctant in the long term for Dylan's life to be too overly scheduled with organized activities -- I want him to have plenty of open, creative free time to play and do whatever he wants to and just be a kid. And maybe part of it is that although music is a part of my life, it's not exactly the kind of sitting around singing campfire type of songs that I pictured the music class might be. But it turned out that I really enjoyed it. It's very participatory, it's very active, it's got a decent amount of variety, and it was a lot of fun. Each 10 week session has a set of songs, and you get an accompanying CD and songbook with lyrics and sheet music. And the music is actually kind of interesting -- I genuinely like listening to the CD (and playing some of it on the piano). And they cleverly set it up so that if you want to repeatedly sign up, it's not just the same old thing, since the next session will have an entirely new set of songs. I think there are something like 9 different song books, so you could if you wanted to sign your kid up for a few years straight before repeating. Anyway, if anyone out there has a young child, and some interest in music, I definitely recommend it.
Although Lorien was the one that found the program and convinced me that we should sign up, going to Music Together with Dylan had been my thing. We picked a time slot early(ish) in the morning so I could go before work. And I liked having a regular activity with Dylan and other kids -- as the primary caregiver, Lorien had a lot of other opportunities for that that I didn't. But it was getting a little bit harder on me as the weeks progressed. Some of it is pretty physical (dancing around, and sometimes having to pick up Dylan as needed depending on his mood), and my energy level was gradually decreasing. Not to mention that I was downing antacids and cough drops like crazy and especially trying to be in a reasonably normal condition with as little coughing as possible for the classes. Then I had to miss one week because I had a cold, and soon after that came a whole series of instances of Lorien going instead of me. I think one week was the CT scan, then the next week was the biopsy, and then by the next week I was in the hospital getting chemo. It was especially disappointing because it sounded like Dylan was getting more into it and getting more out of the class as time progressed. In the time slot we were in, he was I think the second youngest kid in the class, and although sometimes he was into the music, often his attention seemed elsewhere. I think the initial timing was especially poor because he had started to walk very shortly before the first music class, so in the beginning he was often more interested in running around the room than sitting down in a circle, if that's what we were trying to do.
But I really wanted to go with him to one more session before it was over. So yesterday I did, and took my Mom along as well. It was perhaps a poor judgement call and a little bit risky -- my immune system is compromised, and a large gathering of toddlers is a bit of a collection of germs just waiting to be spread. Hopefully I won't get sick and regret it. I did very much enjoy going and participating. And as with our excursion to the food trucks the previous week, it injected a bit of normalcy back into my life. I was fortunate to be feeling pretty good for the class (even if I overdid it a bit once tossing Dylan around and then had to rest somewhat), which was good timing because I was feeling pretty damn bad later in the day. Nevertheless, I think we'll be skipping the next couple of sessions. I do hope that we can do it again once I get better, and that Dylan will be able to get even more out of it once he's a little older.
I figured there was no way that I was going to have the energy for a 9:30 AM class (yeah, I know, plenty of you are at work way before that and probably think I sound pretty damn lazy considering that time to be "early") unless I got something resembling a decent night's sleep. So, the night before (right after my previous blog post), I tried taking some Ambien, which had been my previous sleep remedy for occasional use. In better days I could get by with only 5 mg, or sometimes even 2.5 mg. I started with 5 mg, but after a while concluded it wasn't doing much, so upped it to 10 mg. Thankfully, it did the trick, I got to sleep, and made it to class. Hopefully as long as I reserve it only on an as needed basis, and not for regular use, it will continue to have some effect.
Which meant that I took nothing the next night. And it was hours before I got to sleep. I'm thinking that maybe it's time to get a clip on reading light so that I can easily read in bed into the wee hours without disturbing Lorien.
I'm also wondering if maybe my policy with respect to food might need some tweaking. Back when I thought I had GERD, I tried very hard to arrange my schedule so that I didn't eat anything within 2 to 3 hours of going to sleep. And I've been trying to keep that up. But I've found myself repeatedly lying in bed, unable to sleep, thinking of food, and what I'm going to eat the next day. Last night I finally gave in and got up out of bed and had a few pieces of bread and butter. (OMG have I mentioned how amazing the rye bread from the Cheeseboard is? Not at all like New York deli Jewish rye, which I think is what they're trying for, but delicious nevertheless. But I digress...) Lying down back in bed right after eating did indeed have a few negative effects, but they were actually fairly minimal. Did it ultimately help me get to sleep? Hard to say. I think I ate around 1:30 AM and finally got to sleep sometime a little after 2:00 AM. Not great, but better than being up until 3 or 4. And I didn't get up again until Dylan awoke a little bit after 7. Of course, 5 hours sleep is pretty damn inadequate, especially for a body under so much stress and trying to heal. I think naps are going to have to be a regular part of my schedule for the forseeable future. But the bottom line of all of this is that the next time I'm at all hungry at night, I'm *not* going to do nothing because it's too close to bedtime. I'm going to eat something.
Come to think of it, I'm hungry right now. Time for some dessert. I think I'm in the mood for some form of chocolate. You know, doctor's orders. :)
Thursday, March 15, 2012
Two steps forward, one step back
Digestive issues have been improving over the past few days. Not perfect, but I'm feeling much more functional, and I'm able to eat a lot more freely than I was a few days ago. Maybe I can even start putting some weight on, although that hasn't yet materialized.
But now I'm worrying that I'm going from just having a little bit of trouble falling asleep to more serious insomnia. Two nights ago it wasn't just trouble falling asleep -- I also woke up in the middle of the night and then had a lot of trouble getting back to sleep. So I'm feeling in general a lot more tired during the day. Late this morning we basically had a family nap -- Lorien and I both slept some while Dylan napped. It was awesome. Maybe it's a little weird to think about some daytime sleep being one of the highlights of my day, but hey, I'll take what I can get.
Perhaps this is the routine that I'll be settling into. A week of feeling good, a week of feeling bad, a week of feeling okay? Repeat for 6 months. (Ignoring for a moment the radiation that's going to follow, which for some reason scares the hell out of me more than the chemo, but think there might not be a rational basis for that. I'm not sure, I still have to make an appointment with the radiation doctor, and I don't yet know the details.)
I met with my oncologist today, and he assures me that everything looks great as far as my blood tests go. And that if what I describe to him as my feelings and side effects are as bad as it gets for me, that I should consider myself very lucky.
So I probably should just do my best to enjoy life when I'm feeling good, and deal with it and lay low when I'm feeling not so good. And things really were going pretty good before, which I now think is probably mostly from the Prednisone. Last Wednesday in particular was just a really wonderful day. Becca and Mikey were visiting from Portland with their son Ollie; the weather was beautiful; we had a wonderful picnic lunch (from Slow) at Totland, which was especially great because I had been a little wary of restaurant food where there might be more unknowns; we hung out at our house for a while and the kids played; and then, emboldened by the lunch experience, we had a pleasant walk to and from the weekly food truck gathering of Off The Grid in North Berkeley for dinner. Not exactly an elaborate night on the town, but for a brief moment everything felt normal. Maybe even better than normal, since I didn't have to work. :) Being able to enjoy meals out was I think a big part of it. As much as I kind of hate the word, I guess I am a bit of a foodie, and having eating directly leading to discomfort and having to be so careful about what I eat for so much of the past many months has been a huge downer.
And maybe next time I want to blog about a really good day, I should do it before I have a bad day.
Time to go to sleep. Or at least try.
But now I'm worrying that I'm going from just having a little bit of trouble falling asleep to more serious insomnia. Two nights ago it wasn't just trouble falling asleep -- I also woke up in the middle of the night and then had a lot of trouble getting back to sleep. So I'm feeling in general a lot more tired during the day. Late this morning we basically had a family nap -- Lorien and I both slept some while Dylan napped. It was awesome. Maybe it's a little weird to think about some daytime sleep being one of the highlights of my day, but hey, I'll take what I can get.
Perhaps this is the routine that I'll be settling into. A week of feeling good, a week of feeling bad, a week of feeling okay? Repeat for 6 months. (Ignoring for a moment the radiation that's going to follow, which for some reason scares the hell out of me more than the chemo, but think there might not be a rational basis for that. I'm not sure, I still have to make an appointment with the radiation doctor, and I don't yet know the details.)
I met with my oncologist today, and he assures me that everything looks great as far as my blood tests go. And that if what I describe to him as my feelings and side effects are as bad as it gets for me, that I should consider myself very lucky.
So I probably should just do my best to enjoy life when I'm feeling good, and deal with it and lay low when I'm feeling not so good. And things really were going pretty good before, which I now think is probably mostly from the Prednisone. Last Wednesday in particular was just a really wonderful day. Becca and Mikey were visiting from Portland with their son Ollie; the weather was beautiful; we had a wonderful picnic lunch (from Slow) at Totland, which was especially great because I had been a little wary of restaurant food where there might be more unknowns; we hung out at our house for a while and the kids played; and then, emboldened by the lunch experience, we had a pleasant walk to and from the weekly food truck gathering of Off The Grid in North Berkeley for dinner. Not exactly an elaborate night on the town, but for a brief moment everything felt normal. Maybe even better than normal, since I didn't have to work. :) Being able to enjoy meals out was I think a big part of it. As much as I kind of hate the word, I guess I am a bit of a foodie, and having eating directly leading to discomfort and having to be so careful about what I eat for so much of the past many months has been a huge downer.
And maybe next time I want to blog about a really good day, I should do it before I have a bad day.
Time to go to sleep. Or at least try.
Wednesday, March 14, 2012
Mmmm good....
To whomever is responsible for the delivery that just arrived from the Sweet Tooth Fairy, thank you very much. The "cakebites" are indeed quite delicious.
But I have no idea who sent them. There was no indication anywhere inside the package.
But I have no idea who sent them. There was no indication anywhere inside the package.
Tuesday, March 13, 2012
Fire (and water?)
I have noticed a *lot* of sirens from fire engines today. And not just ones that pass by. In two instances, the sirens stopped right as they approached. One was on the street just around the corner, and one was on the street just opposite from that.
I wonder why, and if it's all just a coincidence. Perhaps the sudden (and much needed) arrival of winter weather (for us, that means rain) has something to do with it? People are starting fires in their fireplaces after a long hiatus? One of them I did go outside to see what was up, and I think it may have just been for an EMT, and not an actual fire. Although I'm kind of confused why they would send both the ambulance and a fire truck in that case. I doubt just because the fireman were bored and wanted an excuse to go out.
As many of you probably know, but some may not, we had a house fire back in 2005. It started as an electrical fire. Thankfully it was caught fast and nobody was hurt and the damage was relatively minimal as far as fires go. But any kind of house fire can easily (and did) do some serious damage that becomes a significant undertaking to repair.
So I'm kind of especially sensitive and aware of sirens from fire engines. It's not something that I used to think about much, but after having a fire, I realize that behind every siren, there's someone with a story, and I wonder what's going on and sympathize with them. And hope that it's just a false alarm.
I also get just a tiny bit panicky when I do hear a siren that doesn't go on by, hoping that it's not here for our house.
I'm not sure if I had ever known anyone else that had had a fire. But somehow, as soon as we had a fire, I kept meeting all sorts of people with fire stories. As if I had somehow joined some unwanted club and was being drawn to like minded members.
Some time last week we were at a park with Dylan and ran into a friend who was there with her son, and I hadn't yet seen her since being diagnosed with cancer. So of course we got to talking about how I was feeling, etc. And she was there with another friend, and this friend of hers has a boyfriend who is currently battling cancer. So we got to talking, and it turns out that he has the same oncologist as I do. Which got me wondering how many oncologists there are in the East Bay, and how many people are currently fighting cancer. And also whether or not this was going to be like the fire, and if I was going to start suddenly meeting all kinds of people with cancer stories. And if so, maybe that's okay. Because maybe it's always been out there, and I just haven't known. And as I said in my initial blog about this, maybe it's not such a bad idea for people to share the bad things in life, so that when something bad does happen to them, they know they're not alone.
I wonder why, and if it's all just a coincidence. Perhaps the sudden (and much needed) arrival of winter weather (for us, that means rain) has something to do with it? People are starting fires in their fireplaces after a long hiatus? One of them I did go outside to see what was up, and I think it may have just been for an EMT, and not an actual fire. Although I'm kind of confused why they would send both the ambulance and a fire truck in that case. I doubt just because the fireman were bored and wanted an excuse to go out.
As many of you probably know, but some may not, we had a house fire back in 2005. It started as an electrical fire. Thankfully it was caught fast and nobody was hurt and the damage was relatively minimal as far as fires go. But any kind of house fire can easily (and did) do some serious damage that becomes a significant undertaking to repair.
So I'm kind of especially sensitive and aware of sirens from fire engines. It's not something that I used to think about much, but after having a fire, I realize that behind every siren, there's someone with a story, and I wonder what's going on and sympathize with them. And hope that it's just a false alarm.
I also get just a tiny bit panicky when I do hear a siren that doesn't go on by, hoping that it's not here for our house.
I'm not sure if I had ever known anyone else that had had a fire. But somehow, as soon as we had a fire, I kept meeting all sorts of people with fire stories. As if I had somehow joined some unwanted club and was being drawn to like minded members.
Some time last week we were at a park with Dylan and ran into a friend who was there with her son, and I hadn't yet seen her since being diagnosed with cancer. So of course we got to talking about how I was feeling, etc. And she was there with another friend, and this friend of hers has a boyfriend who is currently battling cancer. So we got to talking, and it turns out that he has the same oncologist as I do. Which got me wondering how many oncologists there are in the East Bay, and how many people are currently fighting cancer. And also whether or not this was going to be like the fire, and if I was going to start suddenly meeting all kinds of people with cancer stories. And if so, maybe that's okay. Because maybe it's always been out there, and I just haven't known. And as I said in my initial blog about this, maybe it's not such a bad idea for people to share the bad things in life, so that when something bad does happen to them, they know they're not alone.
Tolerance
And not the good kind, where I'm fortunate to live in a place where, if I wanted to, I could wear nail polish and a dress and high heels, and that would be okay. (Not that I would. I think heels are stupid.)
I'm talking about the bad kind, where after taking Ativan for only a week to help get to sleep, it pretty much no longer has any effect on me.
I suppose it's better than dependence, which is why I'm just giving up on it rather than starting to play the game of taking a little bit more. I'm pretty determined to never get physically addicted to any drug. That's one of the reasons I'm pretty against nicotine, except for maybe the occasional sheesha. I used to even view caffeine as a serious drug, although I've moderated my attitude towards that a bit in recent years. (Traveling to France will do that to you.)
I suppose it could be related to my ongoing digestive issues (which, sadly, continue to come and go), but I doubt it.
Not a huge deal, it's probably about time I started trying to just get to sleep normally anyway. And if it just means that I have to take a mid afternoon nap some days, I can deal with that too.
I'm talking about the bad kind, where after taking Ativan for only a week to help get to sleep, it pretty much no longer has any effect on me.
I suppose it's better than dependence, which is why I'm just giving up on it rather than starting to play the game of taking a little bit more. I'm pretty determined to never get physically addicted to any drug. That's one of the reasons I'm pretty against nicotine, except for maybe the occasional sheesha. I used to even view caffeine as a serious drug, although I've moderated my attitude towards that a bit in recent years. (Traveling to France will do that to you.)
I suppose it could be related to my ongoing digestive issues (which, sadly, continue to come and go), but I doubt it.
Not a huge deal, it's probably about time I started trying to just get to sleep normally anyway. And if it just means that I have to take a mid afternoon nap some days, I can deal with that too.
Sunday, March 11, 2012
Grrr, and yawn, ....
A few observations based on owning a scale for a few days:
1) My weight varies significantly over the course of a day
2) I'm already obsessive about checking it
Maybe I won't be so obsessive once I finally bottom out, but today I observed a new record low, 123.8#. I suppose it's all arbitrary and based on an antiquated system that nobody else uses, but still, dipping below 125# was a bit of a psychological disappointment. Maybe I should console myself and reserve true panic for if I ever dip below 50 kg. (I'm guessing we'd be talking about some serious medical intervention if I ever even got close to that.)
Nevertheless, I do wonder when I was last this light. It's gotta be way back into high school. But there's no way to know for sure. A number of years back, when I was an adult, I called my old pediatrician's office to get a copy of my childhood medical records, only to be told that they had been destroyed. Which kind of pissed me off. My parents were (and still are) at the exact same address and phone number (modulo the 215 => 215/610 area code split) that they were for the entire 18 years that I was a patient there. You'd think they could have made even the slightest effort to contact them before tossing all of the records.
Still not feeling all that great, mostly digestive issues. Although last night, despite my observation about Sudoku, I had trouble sleeping. I've been taking Ativan since getting out of the hospital, and last night it made me drowsy for a while, but then felt like it lost its effectiveness before I actually got to sleep. It had been also somewhat less effective (but still eventually good enough), the night before. I'm wondering whether I'm already developing a tolerance, or if it perhaps its just coincident with the stomach troubles. I've occasionally taken Ambien in the past (usually for either jet lag, or sleeping at altitude), but never for more than a few days in a row. So I'm not really sure.
And although there's kind of some stuff that I'd like to be getting done with my time at home, as Lorien keeps reminding me, I don't really need to be doing ANYTHING except for resting and recovering, not even blogging. So if I just want to take some time in the middle of the afternoon and sleep (which I did today), that's perfectly okay. Assuming that I can manage it with Dylan around. Today coincided with Lorien taking him to the park, which helped. Oh yeah, and thanks to Laura for the comfy eye shades -- they help too.
So things continue to be so so. Not quite as rosy as it was last week, but I didn't really expect everything to be all great all of the time. And frankly, if this is the worst that I experience, I should consider myself VERY lucky.
1) My weight varies significantly over the course of a day
2) I'm already obsessive about checking it
Maybe I won't be so obsessive once I finally bottom out, but today I observed a new record low, 123.8#. I suppose it's all arbitrary and based on an antiquated system that nobody else uses, but still, dipping below 125# was a bit of a psychological disappointment. Maybe I should console myself and reserve true panic for if I ever dip below 50 kg. (I'm guessing we'd be talking about some serious medical intervention if I ever even got close to that.)
Nevertheless, I do wonder when I was last this light. It's gotta be way back into high school. But there's no way to know for sure. A number of years back, when I was an adult, I called my old pediatrician's office to get a copy of my childhood medical records, only to be told that they had been destroyed. Which kind of pissed me off. My parents were (and still are) at the exact same address and phone number (modulo the 215 => 215/610 area code split) that they were for the entire 18 years that I was a patient there. You'd think they could have made even the slightest effort to contact them before tossing all of the records.
Still not feeling all that great, mostly digestive issues. Although last night, despite my observation about Sudoku, I had trouble sleeping. I've been taking Ativan since getting out of the hospital, and last night it made me drowsy for a while, but then felt like it lost its effectiveness before I actually got to sleep. It had been also somewhat less effective (but still eventually good enough), the night before. I'm wondering whether I'm already developing a tolerance, or if it perhaps its just coincident with the stomach troubles. I've occasionally taken Ambien in the past (usually for either jet lag, or sleeping at altitude), but never for more than a few days in a row. So I'm not really sure.
And although there's kind of some stuff that I'd like to be getting done with my time at home, as Lorien keeps reminding me, I don't really need to be doing ANYTHING except for resting and recovering, not even blogging. So if I just want to take some time in the middle of the afternoon and sleep (which I did today), that's perfectly okay. Assuming that I can manage it with Dylan around. Today coincided with Lorien taking him to the park, which helped. Oh yeah, and thanks to Laura for the comfy eye shades -- they help too.
So things continue to be so so. Not quite as rosy as it was last week, but I didn't really expect everything to be all great all of the time. And frankly, if this is the worst that I experience, I should consider myself VERY lucky.
Saturday, March 10, 2012
Empirical evidence ...
... indicates that Sudoku is much harder to play as sleeping pills are starting to kick in.
Ups and downs
I suppose I may have left my readership hanging wrt my reaction coming down of the Prednisone.
To a first order it was fine. I didn't experience any significant either physical or emotional changes. There's enough minor ups and downs that it's hard to pinpoint it in too much more detail.
And I've also now managed to have a day without morphine. Which I think may have given me a few issues in the afternoon, but I made it through them.
And I've had a few bouts of being more tired than usual and needing some more rest, and maybe it has to do with the medicines, but who knows. Maybe it just has to do with having cancer.
So I was all set to blog a bit last night about how relatively lovely the past few days have been, and how nice it's been to just relax and spend some time with friends and with Dylan enjoying the unusually warm and sunny weather.
But then last night I felt like crap, and I can't say that it's hugely improved right now. Basically I've got some digestive issues I need to sort out.
We did just get a scale, so now I can track my weight with however much obsessive compulsive detail I desire. And it's good to see that the water weight is gone. But it's also a bit shocking (assuming the scale is accurate -- I'm going to try to get a feel for that by comparing it with the balance at my next oncologist appointment) to see that I'm back down to about my low point. And this is even after having a few unexplainable bouts of the munchies over the previous few days, involvin ice cream and cupcakes, that I had hoped might have put a little fat back on me.
So hopefully I'll feel well enough soon enough to start eating normally again. Because I really could use a few more pounds, and right now the thought of eating much at all isn't too appetizing.
To a first order it was fine. I didn't experience any significant either physical or emotional changes. There's enough minor ups and downs that it's hard to pinpoint it in too much more detail.
And I've also now managed to have a day without morphine. Which I think may have given me a few issues in the afternoon, but I made it through them.
And I've had a few bouts of being more tired than usual and needing some more rest, and maybe it has to do with the medicines, but who knows. Maybe it just has to do with having cancer.
So I was all set to blog a bit last night about how relatively lovely the past few days have been, and how nice it's been to just relax and spend some time with friends and with Dylan enjoying the unusually warm and sunny weather.
But then last night I felt like crap, and I can't say that it's hugely improved right now. Basically I've got some digestive issues I need to sort out.
We did just get a scale, so now I can track my weight with however much obsessive compulsive detail I desire. And it's good to see that the water weight is gone. But it's also a bit shocking (assuming the scale is accurate -- I'm going to try to get a feel for that by comparing it with the balance at my next oncologist appointment) to see that I'm back down to about my low point. And this is even after having a few unexplainable bouts of the munchies over the previous few days, involvin ice cream and cupcakes, that I had hoped might have put a little fat back on me.
So hopefully I'll feel well enough soon enough to start eating normally again. Because I really could use a few more pounds, and right now the thought of eating much at all isn't too appetizing.
Thursday, March 08, 2012
Hospital recap
I suppose it's starting to get far enough in the past that if there's any things I want to comment about my hospital stay, I ought to do it before I forget about them.
I guess the best thing I can say is that it was short. Shorter than expected. As much as I guess it wasn't so bad as far as hospital stays go (thankfully I have very little experience), it's hard to say too much good about any hospital stay.
Overall I think I got fine medical care, but I have a lot of little complaints about things, mostly with respect to communication. I've been playing phone tag with a nurse from the hospital for the past few days -- hopefully I will have a chance to voice some of my concerns. And while my oncologist finds it somewhat amusing how many people I managed to piss off in a short amount of time, the more I think about it, the more that troubles me a bit. I realize that I am probably a more demanding and vocal patient than average. Nevertheless, I realize the real world constraints of providing care in a hospital, and that the nurses and other staff are often overworked, understaffed, underappreciated, and underpaid. I went out of my way to be constructive in any criticism that I offered, and to be as polite as possible, and not just a complaining whiner.
I think the one episode that annoyed me the most at the time that it happened had to do with the scheduling and implications of the chemo. As I mentioned before, I've got this port installed in me (it still kind of freaks me out that there's this thing in me) where they give me the chemo drugs. So the chemo couldn't start until that got done. And that's a minor surgical procedure, which meant I couldn't eat or drink anything until that got done. And that was originally scheduled I think around noon on my first full day there, but it kept slipping, and they didn't really give me that much feedback about timing as it was slipping. So once it was finally done, I was really kind of desparate to eat, but wanted to take it easy, esp. given the issues that I've been having with respect to eating (especially in situations in which I had gone too long without eating). So once I was done eating, I wanted a little time for my body to recover and digest. Not to mention that I had no idea what might happen with appetite and nausea, so I felt it was extra important to get some serious nutrition into me while it still had some reasonable guarantee of being possible.
But then on the flip side was the question of sleep. I had been having increasing trouble getting sleep at night, and that was another worry of mine. So I was hoping to do my best to get some decent sleep before whatever side effects of chemo might kick in, and to have this all scheduled in some reasonably sane way. But even once I had eaten and digested some, there were other various medication prereqs that had to happen before the chemo could start. So it's starting to approach midnight (I believe this is late on the first), and I'm having a discussion with my nurse trying to time the best time to take a sleeping pill relative to all of the other stuff that's going to happen to me, although my specific concern at this moment is the fact that they're going to want to weigh me and draw blood sometime around 5 or 6 am. Another nurse (I think perhaps the head nurse for the floor) happens to be in the room at the time, listening to this conversation, and she turns to me like I'm crazy. Finally she makes it pretty clear, "You're not really going to get any sleep tonite", and proceeds to explain to me what's really going to happen, and how intrusive it is, and how there's this strict protocol, and things happened at a measured pace, and they're constantly checking my vitals, and gradually upping the pace (and the intervals of checking), but if something goes wrong that that can be rolled back, etc. While I was very thankful with her for her honesty and forthrightness, I was kind of stunned that none of this was explained to me earlier. So I turn to the woman who is my nurse and is standing right there, and say somewhat incredulously to her, "Why didn't you tell me any of this?" To which her response was, "I did." Which is total and utter bullshit. The closest I can come to unraveling this miscommunication is that when she had previously said "You can sleep", she meant that if somehow I manage to doze off briefly between periods of being poked and prodded, that nobody is going to forcably awaken me. But that's pretty damn different from the impression that she had given me that periodically people would be coming in quietly to change IV lines and keep an eye on me, but that I'd be able to a first order to get something somewhat at least resembling a night's sleep.
So it ended up being a long night. A very long night, because things didn't go 100% as had been hoped for. They start the first chemo drug at a pretty slow rate, I think 50 ml/hr. They start out checking your vital signs every 15 minutes, and gradually ease up on that as they gradually increase the dosage to I think a target of 400 ml/hr. But I never made it that far. Sometime I think around 200 or 250, I started to develop a rash. So they put the chemo on hold and get a doctor. They gave me some cortizone, which thankfully had a very rapid and complete effect on the rash -- the next time I checked, there was literally no trace of it. But the downside is that they dialed me back to 50 ml/hr, and kept it at that rate for the duration. So at this point it's the early hours of the morning, I still have something like 7 or 8 or 9 (I forget how many now) hours to go on this drug, and this is just the first drug.
Anyway, enough complaining about that. I got through it fine, and in retrospect my body's reactions to all of this has been as positive as I could possibly expect, that it's not as big of a deal anymore. (Although I was pretty pissed off at the time.)
While I'm on the topic of chemo, here's a copy the glossy brochure I mentioned before for the Power Port (tm). So what is the probability that the woman on the front actually has this device implanted within her? Am I the only one that is somewhat disgusted by the notion of booth babes for medical devices?
I'm VERY glad that I brought my laptop to the hospital, and that I was able to overcome the wifi annoyances and communicate with the outside world. I also really appreciated having the laptop for music. What got me through the late night hours of chemo, when I couldn't manage to get any actual sleep, was Dr. Toast. I tried listening to some other stuff, but I eventually found myself just coming back to this. It was just so perfect. Thank you to whomever turned me on to this -- was that Brendan? And if anyone has any suggestions for any other music that I might similarly like, please do share. (I probably should pose this question to a larger audience.) I suppose in general what I'm looking for is something somewhat mellow but with somewhat of an interesting beat. Electronic or -ish without being a bunch of crappy repetitive techno. If any of my readers remember bianca's from Burning Man in the late 90's or early 00's, I guess anything kind of "shackgroove" may be what I have in mind. But back to Dr. Toast -- want to know what he sounds like? Go download it yourself and try it out. It's freely available online with a "name your own price" policy. I wish more musicians would do this. Also, while I'm on the topic of music, perhaps my all time favorite ambient CD is "Archive Volume Two - Ambient 1994" from Dubtribe Sound System. It's a 2 CD set, but sadly I lost disc 2 years ago. If anyone out there has this, I would love to get a copy. (FLAC preferred, but I'd settle for a high quality AAC or MP3 encoding.)
I was very glad to have a private room at the hospital. Not just for what it meant to me, but I would have felt pretty bad for someone else having to share a room with me. The main reason I chose this hospital vs. the other Alta Bates campus (in Berkeley) was because all of the rooms were private ones.
And in retrospect I'm really glad that I went somewhere close by. Having Lorien be able to regularly visit, and bring me food, meant so much. I would have felt a lot more lonely had I been over in the city.
And one last little story about a comfort from home that meant a lot to me. Dylan has a security blanket -- literally. It's a light blue fleece blanket, with blue, white, and brown colored dots, and a brown satiny border. He calls it Bop. Thankfully we've managed to set some boundaries with Bop (no Bop at the dining table, no Bop in the bathroom, Bop doesn't leave the house), and it's not always with him in the house all of the time, but he definitely derives a substantial amount of comfort from Bop, and he always sleeps with Bop. And I can sympathize with him, and here's why.
When I was very young (I believe this was a gift from birth), I had a stuffed Snoopy. I called it Teddy. I was very attached to it. Besides last week, I've only been hospitalized one other time. I was born with crossed eyes, and at 18 months old (close to Dylan's age now), I was hospitalized for surgery to correct my eyes. Apparently when I came out of surgery, I kept calling out for Teddy. The nurses misunderstood me and thought it was so sweet how devoted I was to my Daddy. (Sorry, Dad.) Apparently over the years I eventually chewed off all of the fur on Snoopy, and he became kind of a nasty, dirty mess, and my parents were concerned that I was a bit too attached to it. So somehow they managed to convince me to part with Snoopy, and they threw him out. Despite having no memory of any of this, I never really forgave them, and it's something that I kept coming back to time and time over the years, how could you possibly have thrown away my Snoopy? In retrospect maybe I was overreacting a bit (I suppose they could have just never told me about any of this), but it did kind of upset me somewhat.
Many years later -- I believe it may have been as a 30th birthday present -- my parents got me a new Snoopy. It was a very touching present that made me very happy.
Obviously, upon my return to the hospital, it was essential that Snoopy accompany me. A mild panic set in (which delayed our departure to the hospital somewhat) when Snoopy couldn't be located, but he was eventually found (I suspect Dylan may have relocated him), and he came with me.
I had been hoping for a cute picture of me snuggling up with Snoopy in the hospital bed. Trust me, it did happen a lot (he absolutely slept with me and was a comfort to me during the chemo), but it just didn't work out to ever get a picture of it. Nevertheless, I present to you the best that I can do, me and various Snoopy's over the ages. (I was a bit chunkier in the middle pic.) I'm especially thankful for the first picture, as it is one of the few childhood pictures I do have. And no, Mom and Dad, I'm not saying that to try to make you feel bad -- I realize that it's a lot easier to take pictures now than it was a generation ago, and I also realize the reality of trying raise 3 kids. I'm not at all bitter about the lack of photographs. I genuinely am expressing appreciation for what I do have.
I guess the best thing I can say is that it was short. Shorter than expected. As much as I guess it wasn't so bad as far as hospital stays go (thankfully I have very little experience), it's hard to say too much good about any hospital stay.
Overall I think I got fine medical care, but I have a lot of little complaints about things, mostly with respect to communication. I've been playing phone tag with a nurse from the hospital for the past few days -- hopefully I will have a chance to voice some of my concerns. And while my oncologist finds it somewhat amusing how many people I managed to piss off in a short amount of time, the more I think about it, the more that troubles me a bit. I realize that I am probably a more demanding and vocal patient than average. Nevertheless, I realize the real world constraints of providing care in a hospital, and that the nurses and other staff are often overworked, understaffed, underappreciated, and underpaid. I went out of my way to be constructive in any criticism that I offered, and to be as polite as possible, and not just a complaining whiner.
I think the one episode that annoyed me the most at the time that it happened had to do with the scheduling and implications of the chemo. As I mentioned before, I've got this port installed in me (it still kind of freaks me out that there's this thing in me) where they give me the chemo drugs. So the chemo couldn't start until that got done. And that's a minor surgical procedure, which meant I couldn't eat or drink anything until that got done. And that was originally scheduled I think around noon on my first full day there, but it kept slipping, and they didn't really give me that much feedback about timing as it was slipping. So once it was finally done, I was really kind of desparate to eat, but wanted to take it easy, esp. given the issues that I've been having with respect to eating (especially in situations in which I had gone too long without eating). So once I was done eating, I wanted a little time for my body to recover and digest. Not to mention that I had no idea what might happen with appetite and nausea, so I felt it was extra important to get some serious nutrition into me while it still had some reasonable guarantee of being possible.
But then on the flip side was the question of sleep. I had been having increasing trouble getting sleep at night, and that was another worry of mine. So I was hoping to do my best to get some decent sleep before whatever side effects of chemo might kick in, and to have this all scheduled in some reasonably sane way. But even once I had eaten and digested some, there were other various medication prereqs that had to happen before the chemo could start. So it's starting to approach midnight (I believe this is late on the first), and I'm having a discussion with my nurse trying to time the best time to take a sleeping pill relative to all of the other stuff that's going to happen to me, although my specific concern at this moment is the fact that they're going to want to weigh me and draw blood sometime around 5 or 6 am. Another nurse (I think perhaps the head nurse for the floor) happens to be in the room at the time, listening to this conversation, and she turns to me like I'm crazy. Finally she makes it pretty clear, "You're not really going to get any sleep tonite", and proceeds to explain to me what's really going to happen, and how intrusive it is, and how there's this strict protocol, and things happened at a measured pace, and they're constantly checking my vitals, and gradually upping the pace (and the intervals of checking), but if something goes wrong that that can be rolled back, etc. While I was very thankful with her for her honesty and forthrightness, I was kind of stunned that none of this was explained to me earlier. So I turn to the woman who is my nurse and is standing right there, and say somewhat incredulously to her, "Why didn't you tell me any of this?" To which her response was, "I did." Which is total and utter bullshit. The closest I can come to unraveling this miscommunication is that when she had previously said "You can sleep", she meant that if somehow I manage to doze off briefly between periods of being poked and prodded, that nobody is going to forcably awaken me. But that's pretty damn different from the impression that she had given me that periodically people would be coming in quietly to change IV lines and keep an eye on me, but that I'd be able to a first order to get something somewhat at least resembling a night's sleep.
So it ended up being a long night. A very long night, because things didn't go 100% as had been hoped for. They start the first chemo drug at a pretty slow rate, I think 50 ml/hr. They start out checking your vital signs every 15 minutes, and gradually ease up on that as they gradually increase the dosage to I think a target of 400 ml/hr. But I never made it that far. Sometime I think around 200 or 250, I started to develop a rash. So they put the chemo on hold and get a doctor. They gave me some cortizone, which thankfully had a very rapid and complete effect on the rash -- the next time I checked, there was literally no trace of it. But the downside is that they dialed me back to 50 ml/hr, and kept it at that rate for the duration. So at this point it's the early hours of the morning, I still have something like 7 or 8 or 9 (I forget how many now) hours to go on this drug, and this is just the first drug.
Anyway, enough complaining about that. I got through it fine, and in retrospect my body's reactions to all of this has been as positive as I could possibly expect, that it's not as big of a deal anymore. (Although I was pretty pissed off at the time.)
While I'm on the topic of chemo, here's a copy the glossy brochure I mentioned before for the Power Port (tm). So what is the probability that the woman on the front actually has this device implanted within her? Am I the only one that is somewhat disgusted by the notion of booth babes for medical devices?
I'm VERY glad that I brought my laptop to the hospital, and that I was able to overcome the wifi annoyances and communicate with the outside world. I also really appreciated having the laptop for music. What got me through the late night hours of chemo, when I couldn't manage to get any actual sleep, was Dr. Toast. I tried listening to some other stuff, but I eventually found myself just coming back to this. It was just so perfect. Thank you to whomever turned me on to this -- was that Brendan? And if anyone has any suggestions for any other music that I might similarly like, please do share. (I probably should pose this question to a larger audience.) I suppose in general what I'm looking for is something somewhat mellow but with somewhat of an interesting beat. Electronic or -ish without being a bunch of crappy repetitive techno. If any of my readers remember bianca's from Burning Man in the late 90's or early 00's, I guess anything kind of "shackgroove" may be what I have in mind. But back to Dr. Toast -- want to know what he sounds like? Go download it yourself and try it out. It's freely available online with a "name your own price" policy. I wish more musicians would do this. Also, while I'm on the topic of music, perhaps my all time favorite ambient CD is "Archive Volume Two - Ambient 1994" from Dubtribe Sound System. It's a 2 CD set, but sadly I lost disc 2 years ago. If anyone out there has this, I would love to get a copy. (FLAC preferred, but I'd settle for a high quality AAC or MP3 encoding.)
I was very glad to have a private room at the hospital. Not just for what it meant to me, but I would have felt pretty bad for someone else having to share a room with me. The main reason I chose this hospital vs. the other Alta Bates campus (in Berkeley) was because all of the rooms were private ones.
And in retrospect I'm really glad that I went somewhere close by. Having Lorien be able to regularly visit, and bring me food, meant so much. I would have felt a lot more lonely had I been over in the city.
And one last little story about a comfort from home that meant a lot to me. Dylan has a security blanket -- literally. It's a light blue fleece blanket, with blue, white, and brown colored dots, and a brown satiny border. He calls it Bop. Thankfully we've managed to set some boundaries with Bop (no Bop at the dining table, no Bop in the bathroom, Bop doesn't leave the house), and it's not always with him in the house all of the time, but he definitely derives a substantial amount of comfort from Bop, and he always sleeps with Bop. And I can sympathize with him, and here's why.
When I was very young (I believe this was a gift from birth), I had a stuffed Snoopy. I called it Teddy. I was very attached to it. Besides last week, I've only been hospitalized one other time. I was born with crossed eyes, and at 18 months old (close to Dylan's age now), I was hospitalized for surgery to correct my eyes. Apparently when I came out of surgery, I kept calling out for Teddy. The nurses misunderstood me and thought it was so sweet how devoted I was to my Daddy. (Sorry, Dad.) Apparently over the years I eventually chewed off all of the fur on Snoopy, and he became kind of a nasty, dirty mess, and my parents were concerned that I was a bit too attached to it. So somehow they managed to convince me to part with Snoopy, and they threw him out. Despite having no memory of any of this, I never really forgave them, and it's something that I kept coming back to time and time over the years, how could you possibly have thrown away my Snoopy? In retrospect maybe I was overreacting a bit (I suppose they could have just never told me about any of this), but it did kind of upset me somewhat.
Many years later -- I believe it may have been as a 30th birthday present -- my parents got me a new Snoopy. It was a very touching present that made me very happy.
Obviously, upon my return to the hospital, it was essential that Snoopy accompany me. A mild panic set in (which delayed our departure to the hospital somewhat) when Snoopy couldn't be located, but he was eventually found (I suspect Dylan may have relocated him), and he came with me.
I had been hoping for a cute picture of me snuggling up with Snoopy in the hospital bed. Trust me, it did happen a lot (he absolutely slept with me and was a comfort to me during the chemo), but it just didn't work out to ever get a picture of it. Nevertheless, I present to you the best that I can do, me and various Snoopy's over the ages. (I was a bit chunkier in the middle pic.) I'm especially thankful for the first picture, as it is one of the few childhood pictures I do have. And no, Mom and Dad, I'm not saying that to try to make you feel bad -- I realize that it's a lot easier to take pictures now than it was a generation ago, and I also realize the reality of trying raise 3 kids. I'm not at all bitter about the lack of photographs. I genuinely am expressing appreciation for what I do have.
Tuesday, March 06, 2012
So far so good
Today I had my first appointment with my oncologist since being discharged from the hospital. They took my vital signs, took some blood, and looked over test results. Basically, so far everything is going as good as could possibly be expected. The bottom line is that I have a tumor in my chest that the chemotherapy will try to reduce. They've done all sorts of other tests trying to find any sign of the cancer spreading anywhere else, and everything has come back negative.
So my schedule for the next 24 weeks is that every week I have blood work done, and every third week I have a day of chemo. 8 cycles planned. If I recall correctly (not looking at my notes right now), halfway through we take more scans to see how I'm doing. Once the chemo is done, then I move on to radiation. I don't really know much of the details of that yet -- that will involve another doctor, but for now that's in the future.
While I'm feeling far from perfect, things continue to go pretty well with my body. There are hour by hour ups and downs. I'm tired a bit, so I'm trying to take it easy and get plenty of rest. (Although I probably should start blogging earlier in the day, but Dylan has this way of not wanting to leave me alone when I'm trying to type on the laptop). I'm still coughing somewhat, and in pain somewhat, but WAY less than a few weeks ago.
I'm still trying to figure out just what's up with my diet and how I ought to be eating. As I think I mentioned before, I started out before all of this at about 149#, and bottomed out around 126#. They pumped me way full of fluids in the hospital, and in one day I shot up from 127# to 134#, and then the next day to 144#. I came in looking emaciated, and soon was looking bizarrely bloated and puffy. (I even had a little trouble getting my shoes on to leave the hospital.) Since then I've dropped to 136#, and I'm starting to look a little bit more normal. So I've got these conflicting desires going on. I want to lose all of the ridiculous water weight, but I also really need to start consuming more calories and trying to put back on some fat and muscle mass. But eating is still causing some issues (although again WAY less than a few weeks ago), so I'm trying to take it easy and not overdo it too much. But I basically have permission from the doctor to do whatever it takes to put on some weight in a way that my body agrees with, whether that's eating my fair share of sweets and fatty foods (hopefully I can feel good enough to resume my on-hiatus enfatuation with David Lebovitz), or smoking pot (although echoing jg's sentiment from his cancer recovery, I'm not really sure if I'm in the mood to be stoned all of the time).
I'm down to just a single morphine pill a day, which may be partially what's contributing to my overall good spirits, although that's also I believe likely a side effect of the Prednisone.
Only a little bit more time to go (I'll have to check the meds, but I think just one more day) before I'm off of the Prednisone, and I suppose that's when I'll be able to better evaluate how I'm really feeling. Hopefully the crash won't be too bad. What the doctor wants to do is this time just stop cold turkey and see how my body handles it. If it's not so good, then next time we'll try a more gradual weaning off.
So my schedule for the next 24 weeks is that every week I have blood work done, and every third week I have a day of chemo. 8 cycles planned. If I recall correctly (not looking at my notes right now), halfway through we take more scans to see how I'm doing. Once the chemo is done, then I move on to radiation. I don't really know much of the details of that yet -- that will involve another doctor, but for now that's in the future.
While I'm feeling far from perfect, things continue to go pretty well with my body. There are hour by hour ups and downs. I'm tired a bit, so I'm trying to take it easy and get plenty of rest. (Although I probably should start blogging earlier in the day, but Dylan has this way of not wanting to leave me alone when I'm trying to type on the laptop). I'm still coughing somewhat, and in pain somewhat, but WAY less than a few weeks ago.
I'm still trying to figure out just what's up with my diet and how I ought to be eating. As I think I mentioned before, I started out before all of this at about 149#, and bottomed out around 126#. They pumped me way full of fluids in the hospital, and in one day I shot up from 127# to 134#, and then the next day to 144#. I came in looking emaciated, and soon was looking bizarrely bloated and puffy. (I even had a little trouble getting my shoes on to leave the hospital.) Since then I've dropped to 136#, and I'm starting to look a little bit more normal. So I've got these conflicting desires going on. I want to lose all of the ridiculous water weight, but I also really need to start consuming more calories and trying to put back on some fat and muscle mass. But eating is still causing some issues (although again WAY less than a few weeks ago), so I'm trying to take it easy and not overdo it too much. But I basically have permission from the doctor to do whatever it takes to put on some weight in a way that my body agrees with, whether that's eating my fair share of sweets and fatty foods (hopefully I can feel good enough to resume my on-hiatus enfatuation with David Lebovitz), or smoking pot (although echoing jg's sentiment from his cancer recovery, I'm not really sure if I'm in the mood to be stoned all of the time).
I'm down to just a single morphine pill a day, which may be partially what's contributing to my overall good spirits, although that's also I believe likely a side effect of the Prednisone.
Only a little bit more time to go (I'll have to check the meds, but I think just one more day) before I'm off of the Prednisone, and I suppose that's when I'll be able to better evaluate how I'm really feeling. Hopefully the crash won't be too bad. What the doctor wants to do is this time just stop cold turkey and see how my body handles it. If it's not so good, then next time we'll try a more gradual weaning off.
Monday, March 05, 2012
My lovely little boy
It's been unfortunate over the past few months, even before I was diagnosed with cancer, as my ability to parent to Dylan was gradually affected (Lorien's recently posted photos notwithstanding). We converted part of our basement into a bit of a home office, and sometime in January I started working from home most of the time due to my declining health. One particularly sad part for me was when Lorien pointed out that whenever I started coughing in the basement, Dylan enthusiastically said "Daddy!"
I'm not sure whether on the whole it's good or bad how young Dylan is right now as we're going through this. On the one hand, he's too young to know what's going on, which means that he doesn't have to worry about me, and assuming that I pull through this, he probably won't remember a thing. But sometimes I wish I could just explain things to him, esp. on days when he's not being the easiest to care for.
But maybe deep down he somehow knows that I need a little bit of extra love. The day I was admitted to the hospital, I was running around trying to get a bunch of errands done before departing. I was standing at the door, getting ready to leave, and totally unprompted he came running up to me and put out his arms and wanted to give me a hug. And then waved me goodbye. I've gotten him to do that before when I initiated it, but I think it was the first time he ever did it totally on his own. It brought me tears of joy. Really, the worst possible outcome of all of this would be if Dylan had to grow up without a father. And I'm determined that that's not going to be the case.
So on a somewhat brighter note, here's a post-processed drawing of a photograph of my lovely little boy. It's a little bit dated -- I think it was taken when he was about 12 months old, and he's pushing 17 months now. (My audience will hopefully forgive me for falling behind both on Dylan picture taking, and on editing and posting of the most recent sets of photos that we do have.) Photo is courtesy of my mother-in-law Judy Fono, post-processing courtesy of Patti Scafidi.
I'm not sure whether on the whole it's good or bad how young Dylan is right now as we're going through this. On the one hand, he's too young to know what's going on, which means that he doesn't have to worry about me, and assuming that I pull through this, he probably won't remember a thing. But sometimes I wish I could just explain things to him, esp. on days when he's not being the easiest to care for.
But maybe deep down he somehow knows that I need a little bit of extra love. The day I was admitted to the hospital, I was running around trying to get a bunch of errands done before departing. I was standing at the door, getting ready to leave, and totally unprompted he came running up to me and put out his arms and wanted to give me a hug. And then waved me goodbye. I've gotten him to do that before when I initiated it, but I think it was the first time he ever did it totally on his own. It brought me tears of joy. Really, the worst possible outcome of all of this would be if Dylan had to grow up without a father. And I'm determined that that's not going to be the case.
My husband is a total badass
Here's Rich carrying Dylan on a hike on Mt. Tamalpais in January, while (unbeknownst to him) growing a grapefruit-sized tumor in his chest.
This lymphoma is messing with the wrong guy.
Why do I even bother ...
... calling the health insurance company when I know I'm not going to get any adequate answers.
My favorite discovery during this morning's phone call -- the phone number for urgent requests for prescription preauthorizations is staffed M-F/8-5. Clearly it's your fault if you have an urgent medical need outside of normal business hours.
Perhaps I'm a little harsh to the people on the phone, but they are the public face of an evil industry. Hopefully some day this country will have a sane health care policy and all of these companies will go out of business.
My favorite discovery during this morning's phone call -- the phone number for urgent requests for prescription preauthorizations is staffed M-F/8-5. Clearly it's your fault if you have an urgent medical need outside of normal business hours.
Perhaps I'm a little harsh to the people on the phone, but they are the public face of an evil industry. Hopefully some day this country will have a sane health care policy and all of these companies will go out of business.
Sunday, March 04, 2012
First day back home
At home now, sitting outside on the front porch. Trying to enjoy some of the beautiful weather we're blessed with. It feels really good to be able to be outside after having been stuck in the hospital for a few days, even if the hospital experience was relatively short. Spent some time earlier relaxing on our back lawn. Yes, we have a lawn now! It's tiny (like so much around here), but Lorien and I spent Labor Day weekend digging up our old (mostly weeds) lawn, installing subsurface irrigation, putting in freshly delivered soil, and seeding a new lawn. We did it all by ourselves, all by hand, and it was a crazy amount of work. (And in retrospect, I probably had cancer at the time.) And I was kind of disappointed, because it came in kinda spotty, and our attempt at eliminating all of the weeds by removing the top 4" or so of existing soil was, shall we say, less than successful. Nevertheless, in the interim when I've been feeling too crappy to worry about the lawn, it has filled quite in a bit [in the American sense, not the British sense, thank you Roger I believe for pointing out the difference]. And Lorien mowed last weekend, which has removed some of the most visible remnants of the weeds. And as long as we can keep the dandelions in check and pull them before they flower and go to seed, even the clover ought to be dormant come summertime. So I'm willing to call it a qualified success.
I'm feeling kind of tired now. Still kind of bloated with water weight, hopefully that will diminish soon and I can start worrying about putting on some real calories. I really ought to buy a scale for home so that I can track this.
[... long pause, various visits from friends, it's evening now, Dylan is getting ready for bed ...]
I kind of lost my train of thought, although sometimes it's more of a clouded fog. Maybe this is chemo-brain, or just plain old tiredness.
Feelings are kind of up and down. I may have given an overly optimistic view of my condition in some of my earlier posts, esp. "I'm happy". I am doing in general very well, and as good as can be expected given the circumstances. But now that I examine the past few days from a bit of a distance, and with some more objectivity, the happiness may have also been a little manic. And I suppose I tend to blog more when I'm feeling more like that. Some of it is genuinely feeling better, but some of it is probably the drugs. And not just the morphine (which I'm trying to cut back on, so far just 1 dose today). Most of the chemo drugs are given in one long IV session (did I already cover this? I'm not sure), but I'm still on Prednisone (in pills) for a couple of more days, and it's very likely that I will feel not nearly as well and may have more side effects once that stops.
I'd also like to once again thank you all for the wonderful wishes that we continue to receive. I do read each and every comment on the blog, and each and every personal email. But please understand that I just can't respond to each and every one personally, at least not right now, and please don't take it personally. I started to mark emails that I wanted to personally reply to, but I realized that the list is getting longer even as I do respond to some, so it may take me quite some time to make it through the queue. And even if I specifically say to you that I will email or chat or call on some particular day, you probably shouldn't hold me to that. It was quite a relief to have a whole day today with no medical appointments or discussions with doctors. My initial thought was that I could devote the day to communications. Lorien reminded me that perhaps I should primarily devote the day to getting some rest and taking care of myself. And yes, even for my immediate family members, I'm sorry that I'm not able to get back to you all as promptly as I would like.
In terms of what people can do to help, still the main thing we've set up organization wise so far is the mealtrain mentioned in another post. Although we're starting to get a little bit of a backlog, and my mother will be coming to help out soon, so we may do a little management with that tonite to try to spread out the effort over time. As someone else (forget now who) said, this isn't a sprint, it's a marathon.
As far as other things that we need help with, so far we've been kind of dealing with it on an ad hoc basis, but I'm thinking of setting up something a little more formal (maybe a wiki, maybe a google doc, hopefully something that non-tech people can deal with without too much trouble). Nothing yet, I'll post here if something like that happens.
And finally, I'd like to single out my loving wife Lorien who is working so hard to take care of me and take care of Dylan and take care of the house and hold everything together. Besides me, she's really one who needs a lot of support, because I couldn't be doing this without her. Thank you Lorien, and I love you very much.
I'm feeling kind of tired now. Still kind of bloated with water weight, hopefully that will diminish soon and I can start worrying about putting on some real calories. I really ought to buy a scale for home so that I can track this.
[... long pause, various visits from friends, it's evening now, Dylan is getting ready for bed ...]
I kind of lost my train of thought, although sometimes it's more of a clouded fog. Maybe this is chemo-brain, or just plain old tiredness.
Feelings are kind of up and down. I may have given an overly optimistic view of my condition in some of my earlier posts, esp. "I'm happy". I am doing in general very well, and as good as can be expected given the circumstances. But now that I examine the past few days from a bit of a distance, and with some more objectivity, the happiness may have also been a little manic. And I suppose I tend to blog more when I'm feeling more like that. Some of it is genuinely feeling better, but some of it is probably the drugs. And not just the morphine (which I'm trying to cut back on, so far just 1 dose today). Most of the chemo drugs are given in one long IV session (did I already cover this? I'm not sure), but I'm still on Prednisone (in pills) for a couple of more days, and it's very likely that I will feel not nearly as well and may have more side effects once that stops.
I'd also like to once again thank you all for the wonderful wishes that we continue to receive. I do read each and every comment on the blog, and each and every personal email. But please understand that I just can't respond to each and every one personally, at least not right now, and please don't take it personally. I started to mark emails that I wanted to personally reply to, but I realized that the list is getting longer even as I do respond to some, so it may take me quite some time to make it through the queue. And even if I specifically say to you that I will email or chat or call on some particular day, you probably shouldn't hold me to that. It was quite a relief to have a whole day today with no medical appointments or discussions with doctors. My initial thought was that I could devote the day to communications. Lorien reminded me that perhaps I should primarily devote the day to getting some rest and taking care of myself. And yes, even for my immediate family members, I'm sorry that I'm not able to get back to you all as promptly as I would like.
In terms of what people can do to help, still the main thing we've set up organization wise so far is the mealtrain mentioned in another post. Although we're starting to get a little bit of a backlog, and my mother will be coming to help out soon, so we may do a little management with that tonite to try to spread out the effort over time. As someone else (forget now who) said, this isn't a sprint, it's a marathon.
As far as other things that we need help with, so far we've been kind of dealing with it on an ad hoc basis, but I'm thinking of setting up something a little more formal (maybe a wiki, maybe a google doc, hopefully something that non-tech people can deal with without too much trouble). Nothing yet, I'll post here if something like that happens.
And finally, I'd like to single out my loving wife Lorien who is working so hard to take care of me and take care of Dylan and take care of the house and hold everything together. Besides me, she's really one who needs a lot of support, because I couldn't be doing this without her. Thank you Lorien, and I love you very much.
Saturday, March 03, 2012
I'm home
No energy for a huge post, need to get to bed, but I did want to share the news that I'm now home, and happy to be here.
In retropsect, getting discharged after 5 pm on a Saturday may not have been the best idea. Especially when they send me off with a laundry list of medications (some of which I needed tonite), but no actual supplies, in an area that isn't exactly the 24x7 bustle of activity that a place like NYC might be. As Lorien put it, "Just what every cancer patient needs - a quest."
A few phone calls to closed (or closing) pharmacies, followed by 3 trips to 2 pharmacies and a few more phone calls to try to deal with an error in one of the prescriptions, and I finally got (almost) all of what I was looking for. At least everything that I need right now.
Time for bed. I'm really looking forward to *not* being woken up between 5 and 6 AM to have someone take my vital signs, weigh me, and take blood out of me. (Unless Dylan has a acquired a new hobby in my absence.)
- Rich
In retropsect, getting discharged after 5 pm on a Saturday may not have been the best idea. Especially when they send me off with a laundry list of medications (some of which I needed tonite), but no actual supplies, in an area that isn't exactly the 24x7 bustle of activity that a place like NYC might be. As Lorien put it, "Just what every cancer patient needs - a quest."
A few phone calls to closed (or closing) pharmacies, followed by 3 trips to 2 pharmacies and a few more phone calls to try to deal with an error in one of the prescriptions, and I finally got (almost) all of what I was looking for. At least everything that I need right now.
Time for bed. I'm really looking forward to *not* being woken up between 5 and 6 AM to have someone take my vital signs, weigh me, and take blood out of me. (Unless Dylan has a acquired a new hobby in my absence.)
- Rich
Morning update
Although it could easily drag into the afternoon before the interruptions stop and I can actually get this posted.
It looks like I'm not taking on too much more water weight gain, still around 17# total. But at least it's leveled off. I slept okay last night but did need to pee a lot which kept waking me up. I should be off the IV fluids very soon, so without so much going on, maybe I'll start to get a net loss.
I am indeed still on target to leave today. It's just contingent on the MRI, which is still allegedly scheduled at noon. Although I'm mildly nervous about my oncologist's comment last night that I managed to piss off the MRI people (which he found somewhat amusing). The story is that the MRI was originally supposed to happen on Thursday, my first full day here. But it didn't, so it got rescheduled until Friday. After the experience of the chemo all night Thurs eve / Fri morn (which I will try to get back to), I desperately wanted my sleep, so my request was for as few interruptions during the day as possible, and scheduling the MRI as late as possible. Well by that time, the MRI had already been scheduled for noon. I said no way. I think they are used to being in the position of power and were shocked that anyone would have the nerve to tell them no, so they're pissed off at me. Although as it turns out in retrospect I don't think it was just my stubbornness that ultimately would have mattered here. The chemo went on for much longer than planned (also more on that later), and my memory (which admittedly was somewhat groggy and fuzzy at this point) is that the chemo didn't even end until around that point (after going on for something like 14 hours). And I HIGHLY doubt that the oncologist would have authorized me to stop and then resume the chemo just so that I could get an MRI which was not particularly time sensitive.
The other possible question here is the report. It's Saturday now, so staff is reduced and things move a bit slower, so it could take a little while for the radiologist to look at the results of the scan and generate a preliminary report. I was initially led to believe that I couldn't be discharged until the report was generated (assuming the results looked okay). And I even called Lorien and told her to postpone her arrival here today based on that. But now I'm being told that the discharge orders are only contingent on the scan itself happening, and I can go home even if the report doesn't get generated today. I'm not really sure who to believe. For the time being I'm not going to tell Lorien to rearrange her schedule yet again, and just do my best to press for the report being generated today, just in case.
And as far as my wondering how much the short term drugs are indeed helping with how I'm feeling, I do think that is partly responsible. My most recent morphine dose ended up getting delayed about an hour, and indeed things did start to get somewhat worse (but still not too bad) within that time range. The good news is that somehow as a result of that I ended up getting my dose upped from 2 mg to 4 mg. And is now what I'm at until I leave. Which I'm somewhat happy about, b/c I was kind of curious to see what 4 was like. No, I'm not a junkie, but I suppose I do have bit of a curiosity about narcotics. As Lorien noted with my experience with Vicodan after some relatively minor outpatient surgery a few years back (where a couple hours after being discharged I was bouncing around at home and wondering if we had ingredients so that I could bake chocolate chip cookies), it's probably a good thing that narcotics generally lead to constipation (which I really don't like), or I might be more tempted to explore them more. (Am I venturing a bit into TMI here, esp. in a public forum? Oh well, blame the morphine. And my general disgust at the DEA and War on [some] Drugs.) Now I'm pondering a graph correlating length of blog posts, or maybe words per minute, or perhaps just general verbosity and frequency of tangents and/or parenthetical expressions and run on sentences, vs. the amount of drugs in my system... But I digress. Yet again.
One more comment wrt chemo and side effects and the drugs... While the side effects continue to be extremely minimal (the hiccuping being the most annoying, which really isn't something I feel I can complain too strongly about), I'm still not technically done with the first round yet. The all night IV marathon is done, but I continue to receive Prednisone (the P part of RCHOP) daily in pill form for a few more days. And that is likely contributing to my overall feeling of well being, and I've been warned that when that stops, my general emotional and physical state could take a significant drop. So I'm prepared for that, and I guess I ought to just enjoy each day for what it is, and take things one day at a time.
Wow, another huge post. And I still feel like I have a backlog of things to ramble about. I hope I'm not starting to bore my readership. Time to take a bit of a break, and hopefully they'll be here soon to take me to the MRI. [They're here now...]
It looks like I'm not taking on too much more water weight gain, still around 17# total. But at least it's leveled off. I slept okay last night but did need to pee a lot which kept waking me up. I should be off the IV fluids very soon, so without so much going on, maybe I'll start to get a net loss.
I am indeed still on target to leave today. It's just contingent on the MRI, which is still allegedly scheduled at noon. Although I'm mildly nervous about my oncologist's comment last night that I managed to piss off the MRI people (which he found somewhat amusing). The story is that the MRI was originally supposed to happen on Thursday, my first full day here. But it didn't, so it got rescheduled until Friday. After the experience of the chemo all night Thurs eve / Fri morn (which I will try to get back to), I desperately wanted my sleep, so my request was for as few interruptions during the day as possible, and scheduling the MRI as late as possible. Well by that time, the MRI had already been scheduled for noon. I said no way. I think they are used to being in the position of power and were shocked that anyone would have the nerve to tell them no, so they're pissed off at me. Although as it turns out in retrospect I don't think it was just my stubbornness that ultimately would have mattered here. The chemo went on for much longer than planned (also more on that later), and my memory (which admittedly was somewhat groggy and fuzzy at this point) is that the chemo didn't even end until around that point (after going on for something like 14 hours). And I HIGHLY doubt that the oncologist would have authorized me to stop and then resume the chemo just so that I could get an MRI which was not particularly time sensitive.
The other possible question here is the report. It's Saturday now, so staff is reduced and things move a bit slower, so it could take a little while for the radiologist to look at the results of the scan and generate a preliminary report. I was initially led to believe that I couldn't be discharged until the report was generated (assuming the results looked okay). And I even called Lorien and told her to postpone her arrival here today based on that. But now I'm being told that the discharge orders are only contingent on the scan itself happening, and I can go home even if the report doesn't get generated today. I'm not really sure who to believe. For the time being I'm not going to tell Lorien to rearrange her schedule yet again, and just do my best to press for the report being generated today, just in case.
And as far as my wondering how much the short term drugs are indeed helping with how I'm feeling, I do think that is partly responsible. My most recent morphine dose ended up getting delayed about an hour, and indeed things did start to get somewhat worse (but still not too bad) within that time range. The good news is that somehow as a result of that I ended up getting my dose upped from 2 mg to 4 mg. And is now what I'm at until I leave. Which I'm somewhat happy about, b/c I was kind of curious to see what 4 was like. No, I'm not a junkie, but I suppose I do have bit of a curiosity about narcotics. As Lorien noted with my experience with Vicodan after some relatively minor outpatient surgery a few years back (where a couple hours after being discharged I was bouncing around at home and wondering if we had ingredients so that I could bake chocolate chip cookies), it's probably a good thing that narcotics generally lead to constipation (which I really don't like), or I might be more tempted to explore them more. (Am I venturing a bit into TMI here, esp. in a public forum? Oh well, blame the morphine. And my general disgust at the DEA and War on [some] Drugs.) Now I'm pondering a graph correlating length of blog posts, or maybe words per minute, or perhaps just general verbosity and frequency of tangents and/or parenthetical expressions and run on sentences, vs. the amount of drugs in my system... But I digress. Yet again.
One more comment wrt chemo and side effects and the drugs... While the side effects continue to be extremely minimal (the hiccuping being the most annoying, which really isn't something I feel I can complain too strongly about), I'm still not technically done with the first round yet. The all night IV marathon is done, but I continue to receive Prednisone (the P part of RCHOP) daily in pill form for a few more days. And that is likely contributing to my overall feeling of well being, and I've been warned that when that stops, my general emotional and physical state could take a significant drop. So I'm prepared for that, and I guess I ought to just enjoy each day for what it is, and take things one day at a time.
Wow, another huge post. And I still feel like I have a backlog of things to ramble about. I hope I'm not starting to bore my readership. Time to take a bit of a break, and hopefully they'll be here soon to take me to the MRI. [They're here now...]
Friday, March 02, 2012
Holy shit weight gain
In the long term, weight gain will be good. I dropped from about 149# to around 126#-127# over a roughly 8 month period. Not good. Losing a little bit of extra fat is one thing. But at that level, I was losing muscle mass, and starting to look seriously emaciated. (I'm 5'9") Potential further weight loss from chemo (and side effects) has been a big worry of mine. (Yes, I realize I'm currently very close to Oaksterdam.)
From early Thurs AM to early Fri AM (so including a good chunk, but not all, of the chemo), my weight shot up about 7#. I didn't believe it, as it was a different scale, so I said get the other scale. Same result.
The daily weighing (am I just a piece of meat?) isn't until the early morning hours (also the time of the daily blood draw), but I was a bit concerned about the weight gain, so I asked to be weighed this night anyway. So now it's been only about 17.5 hours, and I've put on *another* 10#. Again confirmed on both scales.
Obviously this is nearly all water weight. They're purposefully pumping me full of lots of fluids, partly to try to prevent kidney damage from the chemo drugs. But still, this is a HUGE differential. Have I really taken on 7L more of fluid than I've expelled? I suppose this can somewhat be calculated by looking at my charts, minus the unknown figures of how much I've eaten and drank, but that could be estimated. The nurse is contacting the doctor now to discuss further.
From early Thurs AM to early Fri AM (so including a good chunk, but not all, of the chemo), my weight shot up about 7#. I didn't believe it, as it was a different scale, so I said get the other scale. Same result.
The daily weighing (am I just a piece of meat?) isn't until the early morning hours (also the time of the daily blood draw), but I was a bit concerned about the weight gain, so I asked to be weighed this night anyway. So now it's been only about 17.5 hours, and I've put on *another* 10#. Again confirmed on both scales.
Obviously this is nearly all water weight. They're purposefully pumping me full of lots of fluids, partly to try to prevent kidney damage from the chemo drugs. But still, this is a HUGE differential. Have I really taken on 7L more of fluid than I've expelled? I suppose this can somewhat be calculated by looking at my charts, minus the unknown figures of how much I've eaten and drank, but that could be estimated. The nurse is contacting the doctor now to discuss further.
I'm happy
Maybe it's somewhat the morphine talking, but I do feel in a good mood right now.
I'll have more to post later complaining a bit about last night (which had a fair degree of suckiness), and other nitpicks I'm having with being in the hospital, but I think right now it would be nice to have a post that focuses on the positive.
First of all, thank you for the tremendous outpouring of emotional support from all of you (by blog, email, facebook, phone, and in person). While I don't have the time to personally respond to each and every one of you, please do know that it means a lot to both me and Lorien how much kindness and caring and love we're receiving from our extended community.
And offers of support. Lorien is coordinating babysitting help. I think Alicia set something up for meals, but I can't locate it right now. Lorien, can you elaborate?
I am up for seeing visitors starting tomorrow if anyone wants to stop by the hospital. My only scheduled procedure tomorrow is an MRI, roughly between noon and 1pm, but I've come to learn how accurate hospital times are (not). Please coordinate details with with Lorien. I am officially immuno-compromised now as a result of the chemo, so I do make the following requests -- (1) Please wash your hands thoroughly immediately upon entering the room. (2) If you are sick in any way, even a mild cold, please don't visit.
That being said, I have some very good potential news to report. I spoke with my oncologist early this evening, and he thinks I'm doing very well (better than expected), and that there's a chance I might go home tomorrow. I don't believe it, and my guess is Sunday is more likely, but nevertheless, it's good to hear.
He also said that the preliminary results from the bone marrow biopsy are, if I recall his wording correctly, "grossly negative" for cancer. (That's good.)
Additionally, the side effects that I'm experiencing from the chemo are currently extremely minimal. Yes, I know that that could change, but right now I'm taking one day at a time, and rejoicing with what I do have.
And finally, my overall level of well being is significantly improved. I'm coughing much less, the chest pains are hugely decreased, the trouble breathing is hugely decreased, all the negative effects I was having after eating are hugely decreased, as is the pain in my right side. I'm still way far from declaring the way I feel "normal", but compared to how horrible I was just a short time ago, it's a wonderful differential.
And while I won't be posting all the time exactly what I'm listening to like jg does (OMG I'm so happy I have the laptop loaded up with music), I thought the following lyrics from Leonard Cohen, which were playing when I decided I wanted to blog and what the title would be, are applicable. This is from his new CD, "Old Ideas", which was a gift just sent by my sister-in-law Laura. It's the refrain from the lead track, "Going Home":
Going home without my sorrow
Going home sometime tomorrow
Going home to where it’s better than before
Going home without my burden
Going home behind the curtain
Going home without this costume that I wore
I'll have more to post later complaining a bit about last night (which had a fair degree of suckiness), and other nitpicks I'm having with being in the hospital, but I think right now it would be nice to have a post that focuses on the positive.
First of all, thank you for the tremendous outpouring of emotional support from all of you (by blog, email, facebook, phone, and in person). While I don't have the time to personally respond to each and every one of you, please do know that it means a lot to both me and Lorien how much kindness and caring and love we're receiving from our extended community.
And offers of support. Lorien is coordinating babysitting help. I think Alicia set something up for meals, but I can't locate it right now. Lorien, can you elaborate?
I am up for seeing visitors starting tomorrow if anyone wants to stop by the hospital. My only scheduled procedure tomorrow is an MRI, roughly between noon and 1pm, but I've come to learn how accurate hospital times are (not). Please coordinate details with with Lorien. I am officially immuno-compromised now as a result of the chemo, so I do make the following requests -- (1) Please wash your hands thoroughly immediately upon entering the room. (2) If you are sick in any way, even a mild cold, please don't visit.
That being said, I have some very good potential news to report. I spoke with my oncologist early this evening, and he thinks I'm doing very well (better than expected), and that there's a chance I might go home tomorrow. I don't believe it, and my guess is Sunday is more likely, but nevertheless, it's good to hear.
He also said that the preliminary results from the bone marrow biopsy are, if I recall his wording correctly, "grossly negative" for cancer. (That's good.)
Additionally, the side effects that I'm experiencing from the chemo are currently extremely minimal. Yes, I know that that could change, but right now I'm taking one day at a time, and rejoicing with what I do have.
And finally, my overall level of well being is significantly improved. I'm coughing much less, the chest pains are hugely decreased, the trouble breathing is hugely decreased, all the negative effects I was having after eating are hugely decreased, as is the pain in my right side. I'm still way far from declaring the way I feel "normal", but compared to how horrible I was just a short time ago, it's a wonderful differential.
And while I won't be posting all the time exactly what I'm listening to like jg does (OMG I'm so happy I have the laptop loaded up with music), I thought the following lyrics from Leonard Cohen, which were playing when I decided I wanted to blog and what the title would be, are applicable. This is from his new CD, "Old Ideas", which was a gift just sent by my sister-in-law Laura. It's the refrain from the lead track, "Going Home":
Going home without my sorrow
Going home sometime tomorrow
Going home to where it’s better than before
Going home without my burden
Going home behind the curtain
Going home without this costume that I wore
Quick update
Rich started the chemo last night. Other than sleep deprivation, he's doing fine so far.
Thank you and how you can help
First of all, I'd like to thank all of you for the outpouring of support. We've been overwhelmed by so much love and well wishes from everyone. We haven't been able to return every email, but we've read them all and they mean a lot to us. Several of you have tried to IM, SMS, or Facebook message me, and I apologize that I haven't been able to respond in real time (or sometimes at all).
Many of you have asked how you can help us out. I've got babysitting for Dylan lined up through Tuesday, and hopefully Rich will be discharged around then and we won't need intensive help with him every day any more. However, taking him off our hands for an hour or two so I can catch up on chores or spend some quiet time with Rich will continue to be much appreciated, so those of you who've offered - I will take you up on it.
For some reason I thought that I wouldn't need help with food. We really didn't after Dylan was born since Rich was off from work and our parents were here. I've been running around like a hummingbird on methamphetamine for the past two days, and last night I hit a wall, and took Alicia up on her offer to set up a Mealtrain account for us. Here's the link: http://www.mealtrain.com/?id=m6lyj3rhwqut. Rich can't eat spicy or acidic foods, but that's our only restriction. Thanks in advance - if I'm not visiting Rich, looking after Dylan or driving between the two, I probably want to be sleeping, so this sort of help would be wonderful.
Many of you have asked how you can help us out. I've got babysitting for Dylan lined up through Tuesday, and hopefully Rich will be discharged around then and we won't need intensive help with him every day any more. However, taking him off our hands for an hour or two so I can catch up on chores or spend some quiet time with Rich will continue to be much appreciated, so those of you who've offered - I will take you up on it.
For some reason I thought that I wouldn't need help with food. We really didn't after Dylan was born since Rich was off from work and our parents were here. I've been running around like a hummingbird on methamphetamine for the past two days, and last night I hit a wall, and took Alicia up on her offer to set up a Mealtrain account for us. Here's the link: http://www.mealtrain.com/?id=m6lyj3rhwqut. Rich can't eat spicy or acidic foods, but that's our only restriction. Thanks in advance - if I'm not visiting Rich, looking after Dylan or driving between the two, I probably want to be sleeping, so this sort of help would be wonderful.
Thursday, March 01, 2012
And here we go...
Well, almost.
So earlier I got the port in me. Specifically the Power Port (tm). I'm not kidding. They gave me this whole fancy color packet, with all of this schwag, and it's got a snazzy logo. (The schwag that is. I'm not sure if there's a logo on the port itself, although I can't say that I would be completely surprised if that were the case.) Aren't you glad your health care dollars are going towards marketing efforts on behalf of pharmaceutical companies?
I'm pretty much assuming that the MRI isn't happening today. Which isn't a big deal. Of all of the poking and prodding and scanning, it's the one that's not particularly time sensitive and can wait until after the chemo starts. And I think it's the one that's the hardest to schedule on a short notice.
The specific chemo regimen that I'm getting is known as RCHOP, where R = Rituxan, C = Cyclophosphamide, H = Doxorubicin, O = Vincristine, and P = Prednisone. Makes perfect sense, huh? And I thought CS acronyms were bad.
The basic premise of chemo is to load your body with nasty toxic chemicals that kill cells that divide rapidly, which tends to describe cancer cells. The problem is limiting the damage it does to the rest of your body, including cells that normally divide rapidly -- like hair follicles, which is why you generally lose your hair. And there are a whole host of other possible side effects. I'm not going to depress myself by trying to list them all here.
The good news is that most everyone seems to think that in the short term, it's going to make me feel substantially better. That I've got this huge tumor that's wracking the area inside my chest, and that as soon as we can make it start to get smaller, I'll start to feel better. Let's hope they're right.
So I'm not quite on the chemo drugs yet, there's first a few other pharmaceutical prereqs that have to happen first. But that's starting now, and the chemo itself will follow.
The current plan is for this all to happen every 3 weeks for about 6 months. Wish me luck.
So earlier I got the port in me. Specifically the Power Port (tm). I'm not kidding. They gave me this whole fancy color packet, with all of this schwag, and it's got a snazzy logo. (The schwag that is. I'm not sure if there's a logo on the port itself, although I can't say that I would be completely surprised if that were the case.) Aren't you glad your health care dollars are going towards marketing efforts on behalf of pharmaceutical companies?
I'm pretty much assuming that the MRI isn't happening today. Which isn't a big deal. Of all of the poking and prodding and scanning, it's the one that's not particularly time sensitive and can wait until after the chemo starts. And I think it's the one that's the hardest to schedule on a short notice.
The specific chemo regimen that I'm getting is known as RCHOP, where R = Rituxan, C = Cyclophosphamide, H = Doxorubicin, O = Vincristine, and P = Prednisone. Makes perfect sense, huh? And I thought CS acronyms were bad.
The basic premise of chemo is to load your body with nasty toxic chemicals that kill cells that divide rapidly, which tends to describe cancer cells. The problem is limiting the damage it does to the rest of your body, including cells that normally divide rapidly -- like hair follicles, which is why you generally lose your hair. And there are a whole host of other possible side effects. I'm not going to depress myself by trying to list them all here.
The good news is that most everyone seems to think that in the short term, it's going to make me feel substantially better. That I've got this huge tumor that's wracking the area inside my chest, and that as soon as we can make it start to get smaller, I'll start to feel better. Let's hope they're right.
So I'm not quite on the chemo drugs yet, there's first a few other pharmaceutical prereqs that have to happen first. But that's starting now, and the chemo itself will follow.
The current plan is for this all to happen every 3 weeks for about 6 months. Wish me luck.
Just say Yes
May Nancy Reagan be damned. I'll take my drugs and have no qualms about it.
Googling around, 2 mg does seem like a pathetically low dose. But it is enough to make a difference for what I need it for right now.
Googling around, 2 mg does seem like a pathetically low dose. But it is enough to make a difference for what I need it for right now.
The past few days
The past couple of days have been a whirlwind of activity. Thursday of last week I had some blood work, Friday I had a CT-guided biopsy, and Saturday I had a PET scan.
Then the waiting. I got the results of the PET scan on Monday, but the biopsy report didn't come until Tuesday. I had to postpone my oncologist appointment until later in the morning so that we had something to work with.
In little more than a day since coming out of that visit, I got a second opinion with an oncologist at CPMPC in SF, found time to get a haircut, and packed some things up and got admitted to the hospital.
Why a haircut you might ask? It does seem a little silly, since in a matter of weeks I'm going to lose all of my hair. But my hair had gotten so unmangeable, because I had been putting off a number of things that I really should have done (also going to the dentist) because of how bad I was feeling. So I think it is making me happier to have more manageable hair in the interim. And it will be a little less crazy when it starts falling out. I just went to a cheap place as a walkin and said part it on the side, very short. I think it's the fastest haircut I've ever had. Not quite a buzz cut, but not that far from it.
Last night was a bit mixed. Lorien came in along with Dylan to see me admitted, then went home to put him to bed. She came back later (sans Dylan -- thanks Erin for the babysitting!) to keep me company. I had been feeling okay, but then shortly before she was going to leave I had been trying to go to the bathroom and started to feel dizzy. Lorien was trying to help me back to the bed when I passed out. Which of course then led to a flurry of activity by the staff here, and both Lorien's departure and my bed time got pushed back quite a bit. Ultimately I got a decent night's sleep with the help of pharmaceuticals (probably the best sleep I've had in a while), but beforehand my chest was pounding, my heart was racing, I was having trouble breathing, and although I kept needing to cough, I could barely get anything out. It really sucked. The past couple of nights at home had been getting progressively worse. I'm beggining to think that I may have gotted admitted just in the nick of time.
Today overall has been much better. I've been poked and prodded and wheeled around for various tests. So far I've had a bone marrow biopsy, which was the worst part. Damn that was not pleasant. Jg, I can only wonder, is a transplant orders of magnitude worse? After that I had an echocardigram (I was wrong before when I said EKG), and an ultrasound. Later will come a portacath placement -- where they basically put a port in me that's going to stay in for the duration of treatment (so like 6 months) that they'll use to administer chemo (and I think anything and everything else they want to give me). The worst part of waiting for that is that it's a surgical procedure and I can't eat or drink anything until it happens. And the best time estimate I've gotten so far is 2:30 PM. So I'm sitting here watching the clock, blogging, and listening to Bob Dylan. (I'm so glad I loaded up the laptop with music.) Finally I'm also supposed to get an MRI, although I think that might be the hardest to schedule, and the least time sensitive, so that might get pushed to another day.
More on what's in store for me, like the chemo, later. I'm starting to get a headache and need to take a little break. I got a low dose of morphine earlier in the day. It wasn't really enough to get high off of, but it did take the edge off of things, make me relaxed, and best of all, the coughing was almost entirely gone. I'm trying to persuade them to give me some more.
Then the waiting. I got the results of the PET scan on Monday, but the biopsy report didn't come until Tuesday. I had to postpone my oncologist appointment until later in the morning so that we had something to work with.
In little more than a day since coming out of that visit, I got a second opinion with an oncologist at CPMPC in SF, found time to get a haircut, and packed some things up and got admitted to the hospital.
Why a haircut you might ask? It does seem a little silly, since in a matter of weeks I'm going to lose all of my hair. But my hair had gotten so unmangeable, because I had been putting off a number of things that I really should have done (also going to the dentist) because of how bad I was feeling. So I think it is making me happier to have more manageable hair in the interim. And it will be a little less crazy when it starts falling out. I just went to a cheap place as a walkin and said part it on the side, very short. I think it's the fastest haircut I've ever had. Not quite a buzz cut, but not that far from it.
Last night was a bit mixed. Lorien came in along with Dylan to see me admitted, then went home to put him to bed. She came back later (sans Dylan -- thanks Erin for the babysitting!) to keep me company. I had been feeling okay, but then shortly before she was going to leave I had been trying to go to the bathroom and started to feel dizzy. Lorien was trying to help me back to the bed when I passed out. Which of course then led to a flurry of activity by the staff here, and both Lorien's departure and my bed time got pushed back quite a bit. Ultimately I got a decent night's sleep with the help of pharmaceuticals (probably the best sleep I've had in a while), but beforehand my chest was pounding, my heart was racing, I was having trouble breathing, and although I kept needing to cough, I could barely get anything out. It really sucked. The past couple of nights at home had been getting progressively worse. I'm beggining to think that I may have gotted admitted just in the nick of time.
Today overall has been much better. I've been poked and prodded and wheeled around for various tests. So far I've had a bone marrow biopsy, which was the worst part. Damn that was not pleasant. Jg, I can only wonder, is a transplant orders of magnitude worse? After that I had an echocardigram (I was wrong before when I said EKG), and an ultrasound. Later will come a portacath placement -- where they basically put a port in me that's going to stay in for the duration of treatment (so like 6 months) that they'll use to administer chemo (and I think anything and everything else they want to give me). The worst part of waiting for that is that it's a surgical procedure and I can't eat or drink anything until it happens. And the best time estimate I've gotten so far is 2:30 PM. So I'm sitting here watching the clock, blogging, and listening to Bob Dylan. (I'm so glad I loaded up the laptop with music.) Finally I'm also supposed to get an MRI, although I think that might be the hardest to schedule, and the least time sensitive, so that might get pushed to another day.
More on what's in store for me, like the chemo, later. I'm starting to get a headache and need to take a little break. I got a low dose of morphine earlier in the day. It wasn't really enough to get high off of, but it did take the edge off of things, make me relaxed, and best of all, the coughing was almost entirely gone. I'm trying to persuade them to give me some more.
Another semi-random (non-cancer) question
I have a pair of eye shades, pretty cheap, just something I bought at a drug store. Useful when you're say trying to get some sleep in a hospital and lights keep going on and off.
The problem is they apply a bit of pressure against my eyes. Not enough to be uncomfortable, but enough that when I wake up my vision is all blurry and it takes a while to stabilize. (Which is why I'm typing this now in a huge font.) Is there any way around this? Are more expensive shades designed differently to take pressure off of the eyes? (And if so, any suggestions for where to pick up a pair? The Internet isn't very practical if I want them now.) Or is this all just a consequence of aging -- whatever the condition is called that causes your eyes to stiffen up I believe and need reading glasses?
Gotta go get an EKG. More later.
The problem is they apply a bit of pressure against my eyes. Not enough to be uncomfortable, but enough that when I wake up my vision is all blurry and it takes a while to stabilize. (Which is why I'm typing this now in a huge font.) Is there any way around this? Are more expensive shades designed differently to take pressure off of the eyes? (And if so, any suggestions for where to pick up a pair? The Internet isn't very practical if I want them now.) Or is this all just a consequence of aging -- whatever the condition is called that causes your eyes to stiffen up I believe and need reading glasses?
Gotta go get an EKG. More later.
Things that are happening other than Rich's problems getting hospital wifi
Rich, you're so funny.
Anyway, for those of you who'd like an update on what's going on other than Rich's connectivity travails:
Yesterday we went to CPMC in San Francisco to get a second opinion, which turned out to be the same as the first opinion. Apparently the regimen for this kind of lymphoma has been used successfully for decades and Rich would get the same treatment anywhere in the world. So we opted to go with treatment closer to home instead of in SF or Stanford, although if there are complications further down the line, we can always pursue other avenues.
Rich will be at Alta Bates Summit in Oakland until some time early next week. He's undergoing a battery of additional testing today and will start chemo today or tomorrow. My understanding is that it's just one day of chemo for this round, but they want to keep him around for a few extra days just to keep him under observation.
He will probably want visitors at some point, but not quite yet. Stay tuned.
Anyway, for those of you who'd like an update on what's going on other than Rich's connectivity travails:
Yesterday we went to CPMC in San Francisco to get a second opinion, which turned out to be the same as the first opinion. Apparently the regimen for this kind of lymphoma has been used successfully for decades and Rich would get the same treatment anywhere in the world. So we opted to go with treatment closer to home instead of in SF or Stanford, although if there are complications further down the line, we can always pursue other avenues.
Rich will be at Alta Bates Summit in Oakland until some time early next week. He's undergoing a battery of additional testing today and will start chemo today or tomorrow. My understanding is that it's just one day of chemo for this round, but they want to keep him around for a few extra days just to keep him under observation.
He will probably want visitors at some point, but not quite yet. Stay tuned.
Wednesday, February 29, 2012
Not in the mood to be a sysadmin
I'll write more later, but this gist is things moved very fast today and I was admitted to the hospital this evening to begin treatment tomorrow.
What I can't get over and wanted to rant about (and probably few of you care about it, but it's my blog and I want to rant) is the annoying redirection system they have here where you have to agree to some policy before general Internet access starts working. Aren't things just supposed to work on a Mac? Oh yeah, except when they don't.
I finally have things working on my laptop right now, but it required using both ConnectBot on an Android phone and looking at the network settings on an iPhone and some network fiddling on the Mac to get there. (How do non-tech people deal with this?) I was actually pretty damn floored when the doctor came in and asked if there were any other questions that I had, and when I responded that I needed to know the IP address of the DNS server that he left the room and came back with an iPhone on the network settings screen that answered my question. (And why doesn't the Android network settings tell you that? I should write a quick app for that...)
Anyway, I'll get back to more cancer news later tonite if I can. Right now I'm kinda starved and hoping that Lorien arrives soon with some food.
What I can't get over and wanted to rant about (and probably few of you care about it, but it's my blog and I want to rant) is the annoying redirection system they have here where you have to agree to some policy before general Internet access starts working. Aren't things just supposed to work on a Mac? Oh yeah, except when they don't.
I finally have things working on my laptop right now, but it required using both ConnectBot on an Android phone and looking at the network settings on an iPhone and some network fiddling on the Mac to get there. (How do non-tech people deal with this?) I was actually pretty damn floored when the doctor came in and asked if there were any other questions that I had, and when I responded that I needed to know the IP address of the DNS server that he left the room and came back with an iPhone on the network settings screen that answered my question. (And why doesn't the Android network settings tell you that? I should write a quick app for that...)
Anyway, I'll get back to more cancer news later tonite if I can. Right now I'm kinda starved and hoping that Lorien arrives soon with some food.
Tuesday, February 28, 2012
Some bad news
Since I have a bit of a tendency to be verbose, here's the tl;dr version:
I have cancer.
I guess that's starting to get a little bit easier to say.
The slightly longer version is that this is the only spam I will send about this, and if you want to keep up to date in the future, go to http://richandlorien.blogspot.com/
Now on to more details, for those of you who care to read further.
Specifically, I have mediastinal B-cell lymphoma. For any of you lacking basic Wikipedia skills, the mediastinum is an area of the chest.
There are two bits of good news to report. One is that the cancer has not spread to any other parts of my body. The other is that it is likely curable.
As much as I'm not particularly happy about a diagnosis of cancer, I realize that it could be much worse. And it's good to finally know what's wrong with me. I've been sick to some extent for 8 months now, unsure of why. I had been diagnosed with GERD, which obviously in retrospect was wrong. What's really going on is that I have a large tumor in my chest that's pushing on my internal organs and therefore leading to a lot of the same symptoms as reflux (including trouble eating, chest pain, and coughing).
I saw an oncologist today in Oakland who wants to begin treatment as soon as possible. Specifically, he thinks I should have chemotherapy, followed by radiation. Future chemotherapy would be on an outpatient basis, but he wants to initially hospitalize me for about 5-6 days. I was able to get another appointment with an oncologist at the California Pacific Medical Center (CPMC) in San Francisco for tomorrow to get a second opinion before starting any treatment.
You might wonder why I'm blogging about this, advertising it in such a public forum. One is just a matter of practicality. I'd like to keep whomever wants to know what's going on in the loop. But I won't necessarily have the time and energy for too many individual email or phone conversations. And while I'm initially also sending out this one post to a fairly large audience -- including family, close friends, work colleagues, people I knew well in the past but haven't kept contact with as much as I'd like, people that my relationship with is a bit more casual and/or infrequent -- this will be the last such spam. So if you want to know what's up beyond this, follow our blog at http://richandlorien.blogspot.com/
And I've already broken some of my basic principles of privacy (like not sending medical information over insecure email -- why after all of these years can't we have a commonly used means of secure communication?), and Google already knows so much about this, that there's really not much lost by being completely public about this, even to any total strangers who might come across this blog.
And maybe it's not such a bad idea for people to share the bad things in life, so that when something bad does happen to them, they know they're not alone.
And hopefully it will be a bit therapeutic to write about some of this. As well as a way to kill the time.
And I should confess that I might not have thought of it as an option had it not been for my friend jg, who was diagnosed with leukemia back in the fall of 2010, and has been blogging about it at http://www.jgwkia.com/ . I have appreciated reading his blog in the interim, and I really appreciated now being able to go back and look at some of his older posts. And although I may not have a catchy slogan (jgwkia stands for "jg will kick its ass"), his positive thinking throughout his ordeal has made an impression on me. He's also one of the first people I turned to last week when I felt that I needed to talk to someone about this. It reminded me a bit of when Brendan called me first after his house fire, since I had also had a house fire.
So I'll do my best to keep things updated on the blog, but don't expect any particular frequency of posts. Even in the best of times I sometimes have a problem with follow through, and I'm sure some of the times coming up will be a significantly harder times.
A lot of people have already asked how they might be of help. I don't have a lot of specific requests right now, but the main avenue of help (for those that are local) will be helping Lorien to take care of both me and of Dylan, who is now 16 months old.
That's it for now. Yup, I was right, that ended up being way longer than I had thought. Thanks if you actually managed to make it until the end.
- Rich
I have cancer.
I guess that's starting to get a little bit easier to say.
The slightly longer version is that this is the only spam I will send about this, and if you want to keep up to date in the future, go to http://richandlorien.blogspot.com/
Now on to more details, for those of you who care to read further.
Specifically, I have mediastinal B-cell lymphoma. For any of you lacking basic Wikipedia skills, the mediastinum is an area of the chest.
There are two bits of good news to report. One is that the cancer has not spread to any other parts of my body. The other is that it is likely curable.
As much as I'm not particularly happy about a diagnosis of cancer, I realize that it could be much worse. And it's good to finally know what's wrong with me. I've been sick to some extent for 8 months now, unsure of why. I had been diagnosed with GERD, which obviously in retrospect was wrong. What's really going on is that I have a large tumor in my chest that's pushing on my internal organs and therefore leading to a lot of the same symptoms as reflux (including trouble eating, chest pain, and coughing).
I saw an oncologist today in Oakland who wants to begin treatment as soon as possible. Specifically, he thinks I should have chemotherapy, followed by radiation. Future chemotherapy would be on an outpatient basis, but he wants to initially hospitalize me for about 5-6 days. I was able to get another appointment with an oncologist at the California Pacific Medical Center (CPMC) in San Francisco for tomorrow to get a second opinion before starting any treatment.
You might wonder why I'm blogging about this, advertising it in such a public forum. One is just a matter of practicality. I'd like to keep whomever wants to know what's going on in the loop. But I won't necessarily have the time and energy for too many individual email or phone conversations. And while I'm initially also sending out this one post to a fairly large audience -- including family, close friends, work colleagues, people I knew well in the past but haven't kept contact with as much as I'd like, people that my relationship with is a bit more casual and/or infrequent -- this will be the last such spam. So if you want to know what's up beyond this, follow our blog at http://richandlorien.blogspot.com/
And I've already broken some of my basic principles of privacy (like not sending medical information over insecure email -- why after all of these years can't we have a commonly used means of secure communication?), and Google already knows so much about this, that there's really not much lost by being completely public about this, even to any total strangers who might come across this blog.
And maybe it's not such a bad idea for people to share the bad things in life, so that when something bad does happen to them, they know they're not alone.
And hopefully it will be a bit therapeutic to write about some of this. As well as a way to kill the time.
And I should confess that I might not have thought of it as an option had it not been for my friend jg, who was diagnosed with leukemia back in the fall of 2010, and has been blogging about it at http://www.jgwkia.com/ . I have appreciated reading his blog in the interim, and I really appreciated now being able to go back and look at some of his older posts. And although I may not have a catchy slogan (jgwkia stands for "jg will kick its ass"), his positive thinking throughout his ordeal has made an impression on me. He's also one of the first people I turned to last week when I felt that I needed to talk to someone about this. It reminded me a bit of when Brendan called me first after his house fire, since I had also had a house fire.
So I'll do my best to keep things updated on the blog, but don't expect any particular frequency of posts. Even in the best of times I sometimes have a problem with follow through, and I'm sure some of the times coming up will be a significantly harder times.
A lot of people have already asked how they might be of help. I don't have a lot of specific requests right now, but the main avenue of help (for those that are local) will be helping Lorien to take care of both me and of Dylan, who is now 16 months old.
That's it for now. Yup, I was right, that ended up being way longer than I had thought. Thanks if you actually managed to make it until the end.
- Rich
Sunday, February 19, 2012
16-month stats
Dylan had his 16-month well check on Thursday. To our amazement, he's not such a little guy any more. He weighed 22lb 4oz (34th%ile), is 32 inches long (64th%ile) and his head circumference is 49cm (93rd%ile).
In other Dylan news, he's now walking like a champ (he started at the end of December), and is working on tooth #16, a particularly recalcitrant molar. He's also learning new words all the time, although it's often difficult to understand what he's trying to say.
Here's a pic from a couple of weeks ago on a hike up in Tilden Regional Park, where he did some of his own hiking for the first time.
In other Dylan news, he's now walking like a champ (he started at the end of December), and is working on tooth #16, a particularly recalcitrant molar. He's also learning new words all the time, although it's often difficult to understand what he's trying to say.
Here's a pic from a couple of weeks ago on a hike up in Tilden Regional Park, where he did some of his own hiking for the first time.
Wednesday, January 04, 2012
Festivals of Light
This holiday season has been packed full of bright activities. We took Dylan up to the Tilden Merry-Go-Round to see the lights.
Dylan enjoyed the candles, but I wasn't able to get a shot of him like last year because now that he's got motor control and other big-kid skills, he was hellbent on setting himself on fire.
We also participated in our neighbourhood luminaria Christmas eve display for the first time. We had some friends over and went for a stroll along the candlelit streets.
And Hannukah wrapped up a few nights later. I love it when Hannukah falls at the end of the solar year.
I baked some cookies.
Dylan enjoyed the candles, but I wasn't able to get a shot of him like last year because now that he's got motor control and other big-kid skills, he was hellbent on setting himself on fire.
We hope everyone who reads this had a happy holiday!
Tuesday, December 27, 2011
Thanksgiving in Indiana
Thanks to Larry and Galit for hosting the whole family in Indiana. We spent the long weekend hanging around the house, and going for walks.
Rich has gotten the entire photoset up on Flickr, which you can see here. Here are some highlights:
Rich has gotten the entire photoset up on Flickr, which you can see here. Here are some highlights:
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| On a walk with Larry, Dorothy, Lorien, Matthew, David, Laura, Steve and Dylan |
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| Dylan and Aunt Laura at Ball State University |
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| Dylan with cousins David and Matthew (Renoir, eat your heart out) |
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| Dylan with Grandmom and Grandpop |
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| All the Fromms (back from left: Larry, Galit, Dorothy, Eli; front: Rich, Lorien, Dylan, Matthew, Laura, David, Steve) |
Sunday, December 04, 2011
Dylan rides his trike
We have a gazillion pictures from our Thanksgiving trip to Indiana to sort through, but while you wait for those to be posted, here's a video of Dylan on his trike, taken yesterday.
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