Two weeks later
Two weeks ago was my last chemotherapy infusion. I went one more than I thought I might because the week before was tolerable. But the next week was all "WARNING WARNING you're walking wobbly! your neuropathy is creeping up your legs! your hands and feet feel weird ALL THE TIME!" So we agreed it was time to stop. Supposedly I'm starting radiation real soon now.
So--neuropathy has subsided a little but if I walk for half an hour it gets worse in my feet and legs, so exercise takes some determination. I learned yesterday how to sidestep the need for determination. This is what you do:
1. Go to a network of trails that all loop back to the same place so you can't get truly lost.
2. Conveniently forget the "STEEP HILL" designation on the map posted at the other trailhead (it helps to choose the trailhead without the sign).
3. Blithely decide to walk a loop instead of going out a ways and turning back.
4. Blithely forget/downplay the length of the trail so you think you've gone more than halfway before you get to the "STEEP HILL." (which is actually in the moderately steep category, not the needs-walking-stick category) So when you get to the "STEEP HILL" there's no point in turning back.
5. Now you are stuck walking the rest of the trail, no matter how much you'd like to quit.
Actually this was the Red Trail behind Chaminade, which is only a mile and a quarter long, but it took forever (that means a bit over an hour, honestly) to walk it because Zluta had to sniff everything and hello, apparently I have breathing issues again after years without (damnit), so I had to take the upward part a little slower. It wasn't bad but it was dumb. I guess I should get an inhaler again, though I didn't need it yesterday, I just wasn't at peak performance. The good news! is that my knees continue to be excellent and I only even thought about them later and it was "huh, downhill, no problem!"
It was lovely though. Saw a huge cottontail and several brilliant scrub jays, and heard a woodpecker and some other bird which I guess I should call familiar-unknown, in that I've heard that bird a lot around here but I don't know which one it is. The trail goes through a pine flat, a meadow, and a redwood ravine, so most of it was shady. That's why we went there. It was only ten but it was already hot and I had enough self-preservation to avoid sunny exercise.
I already know I don't feel the heat reliably, so I have to hydrate & protect myself based on other information.
Other post-chemotherapy observations:
At some point where I didn't notice it, the rest of my eyelashes and most of the rest of my eyebrows fell out. This is still due to the adriamycin/cytoxan treatments which ended about three months ago, the taxol doesn't do that. Also my nails are still playing out their destiny. My thumbnails are loosening from the top down so they have these giant unreachable pockets that fill up with debris and I can only get them partly clean which is sufficiently gross. I keep experimenting with new methods, but they continue to look like they are bruised (honestly I did think it was bruising at first so my intense efforts to clean them started late). My toenails are working their way off altogether, but it's really slow and the new toenails are already completely formed before the old ones fall off. I've lost three so far, and there's another four or five looking like they'll come off in the foreseeable future, and a couple that look like maybe they'll just be weird forever.
My tastebuds are returning to normal but not as fast as my taste. That is, I want to eat some things that don't yet taste good, so I have some disappointments. My perception of salt which some people already thought was pretty odd is utterly hopeless now. I mean, most things taste to me like the salt got up and walked off the job in protest, but if there's enough salt for me to notice it's there it tastes poisonously oversalted. Normally I mostly don't salt food but enjoy the occasional pickle or pretzel. Now I want to eat some salty food but I'm disappointed every time. Otherwise, most food just tastes a little bland now, and the pervasive plastic taste that ruined everything is mostly gone. For a while water tasted really foul because of it, and I had to force it down to keep from being dehydrated.
You know how there's been a backlash against the hydration obsession fad? Articles everywhere telling you that you don't need eight glasses of water a day? Now I get people trying to tell me I in particular don't need to drink as much as I do (I drink between two and three liters, usually two and a half). They are wrong when they speak of me in particular, though. I know from years of natural experimentation (that is, days of not being able to drink as much as I need), that if I drop much below that level, especially if I do it more than one or two days, I will be terribly thirsty, get headaches, muscle cramps, and cognitive impairment. By the last I mean: if I haven't had enough water to drink, don't let me drive.
I had a kind of depressive episode the first week or so off chemotherapy. For months the infusion center has been the center of my life. Three times every two weeks, and then twice a week, I went there and chatted with the staff, got myself monitored, got myself cared for. I had no idea how attached I was until it ended. I'll be going back there from time to time for monitoring, but it's still an abrupt change. It got better as soon as I realized why I was wanting to sleep all day.
The other medical thing I'm doing is getting used to the BiPAP machine. I love the delicious air coming through the mask but I'm having trouble adjusting in some other ways. I have two masks. I thought I wanted the nose pillow because it was more comfortable than the nose mask the sleep tech offered me at the time of the study (at which it was revealed I was having 90 events an hour and desaturating to 83%). But my nose is a bit stuffy currently and so it is hard to breathe with my mouth closed, which with the nose pillow mask leads to a drowning sensation as the air goes the wrong way. And also the nose pillows kind of hurt my nose. I suspect the pressure on the machine is set too high too. When I use the full face mask the incoming air forces my lips open even if I'm trying quite hard to keep them closed. Even with the attached humidifier going I get pretty dried out too. And I'm having trouble with leaks. All of this will get worked out in time, but it's a lot of adjustment. Currently the longest I've kept the mask on is five hours, but I've also only had it for four days.
Of course I found an apnea forum. There's some true-believerism going on there, but the best thing is that somebody there wrote a nice piece of software to read the SD card from the machine so I can see the full record. Right now I'm finding that endlessly fascinating. I've learned that I do in fact have some possible central apnea going on as well as the obstructive kind, which was my belief from the beginning. It makes little difference in treatment, and the difference is already what the doctor prescribed. That is, he put me on the automatic bi-level machine, which adjusts the pressure so that the body is stimulated to exhale better. There are shenanigans to be done with carbon dioxide, but those aren't warranted unless the BiPAP machine doesn't work well enough. It looks like it will. But I think it will be a while before I am better rested and make more sense.
So--neuropathy has subsided a little but if I walk for half an hour it gets worse in my feet and legs, so exercise takes some determination. I learned yesterday how to sidestep the need for determination. This is what you do:
1. Go to a network of trails that all loop back to the same place so you can't get truly lost.
2. Conveniently forget the "STEEP HILL" designation on the map posted at the other trailhead (it helps to choose the trailhead without the sign).
3. Blithely decide to walk a loop instead of going out a ways and turning back.
4. Blithely forget/downplay the length of the trail so you think you've gone more than halfway before you get to the "STEEP HILL." (which is actually in the moderately steep category, not the needs-walking-stick category) So when you get to the "STEEP HILL" there's no point in turning back.
5. Now you are stuck walking the rest of the trail, no matter how much you'd like to quit.
Actually this was the Red Trail behind Chaminade, which is only a mile and a quarter long, but it took forever (that means a bit over an hour, honestly) to walk it because Zluta had to sniff everything and hello, apparently I have breathing issues again after years without (damnit), so I had to take the upward part a little slower. It wasn't bad but it was dumb. I guess I should get an inhaler again, though I didn't need it yesterday, I just wasn't at peak performance. The good news! is that my knees continue to be excellent and I only even thought about them later and it was "huh, downhill, no problem!"
It was lovely though. Saw a huge cottontail and several brilliant scrub jays, and heard a woodpecker and some other bird which I guess I should call familiar-unknown, in that I've heard that bird a lot around here but I don't know which one it is. The trail goes through a pine flat, a meadow, and a redwood ravine, so most of it was shady. That's why we went there. It was only ten but it was already hot and I had enough self-preservation to avoid sunny exercise.
I already know I don't feel the heat reliably, so I have to hydrate & protect myself based on other information.
Other post-chemotherapy observations:
At some point where I didn't notice it, the rest of my eyelashes and most of the rest of my eyebrows fell out. This is still due to the adriamycin/cytoxan treatments which ended about three months ago, the taxol doesn't do that. Also my nails are still playing out their destiny. My thumbnails are loosening from the top down so they have these giant unreachable pockets that fill up with debris and I can only get them partly clean which is sufficiently gross. I keep experimenting with new methods, but they continue to look like they are bruised (honestly I did think it was bruising at first so my intense efforts to clean them started late). My toenails are working their way off altogether, but it's really slow and the new toenails are already completely formed before the old ones fall off. I've lost three so far, and there's another four or five looking like they'll come off in the foreseeable future, and a couple that look like maybe they'll just be weird forever.
My tastebuds are returning to normal but not as fast as my taste. That is, I want to eat some things that don't yet taste good, so I have some disappointments. My perception of salt which some people already thought was pretty odd is utterly hopeless now. I mean, most things taste to me like the salt got up and walked off the job in protest, but if there's enough salt for me to notice it's there it tastes poisonously oversalted. Normally I mostly don't salt food but enjoy the occasional pickle or pretzel. Now I want to eat some salty food but I'm disappointed every time. Otherwise, most food just tastes a little bland now, and the pervasive plastic taste that ruined everything is mostly gone. For a while water tasted really foul because of it, and I had to force it down to keep from being dehydrated.
You know how there's been a backlash against the hydration obsession fad? Articles everywhere telling you that you don't need eight glasses of water a day? Now I get people trying to tell me I in particular don't need to drink as much as I do (I drink between two and three liters, usually two and a half). They are wrong when they speak of me in particular, though. I know from years of natural experimentation (that is, days of not being able to drink as much as I need), that if I drop much below that level, especially if I do it more than one or two days, I will be terribly thirsty, get headaches, muscle cramps, and cognitive impairment. By the last I mean: if I haven't had enough water to drink, don't let me drive.
I had a kind of depressive episode the first week or so off chemotherapy. For months the infusion center has been the center of my life. Three times every two weeks, and then twice a week, I went there and chatted with the staff, got myself monitored, got myself cared for. I had no idea how attached I was until it ended. I'll be going back there from time to time for monitoring, but it's still an abrupt change. It got better as soon as I realized why I was wanting to sleep all day.
The other medical thing I'm doing is getting used to the BiPAP machine. I love the delicious air coming through the mask but I'm having trouble adjusting in some other ways. I have two masks. I thought I wanted the nose pillow because it was more comfortable than the nose mask the sleep tech offered me at the time of the study (at which it was revealed I was having 90 events an hour and desaturating to 83%). But my nose is a bit stuffy currently and so it is hard to breathe with my mouth closed, which with the nose pillow mask leads to a drowning sensation as the air goes the wrong way. And also the nose pillows kind of hurt my nose. I suspect the pressure on the machine is set too high too. When I use the full face mask the incoming air forces my lips open even if I'm trying quite hard to keep them closed. Even with the attached humidifier going I get pretty dried out too. And I'm having trouble with leaks. All of this will get worked out in time, but it's a lot of adjustment. Currently the longest I've kept the mask on is five hours, but I've also only had it for four days.
Of course I found an apnea forum. There's some true-believerism going on there, but the best thing is that somebody there wrote a nice piece of software to read the SD card from the machine so I can see the full record. Right now I'm finding that endlessly fascinating. I've learned that I do in fact have some possible central apnea going on as well as the obstructive kind, which was my belief from the beginning. It makes little difference in treatment, and the difference is already what the doctor prescribed. That is, he put me on the automatic bi-level machine, which adjusts the pressure so that the body is stimulated to exhale better. There are shenanigans to be done with carbon dioxide, but those aren't warranted unless the BiPAP machine doesn't work well enough. It looks like it will. But I think it will be a while before I am better rested and make more sense.