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. :)
Saturday, March 17, 2012
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.
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