JE Day 4: A Bit Easier
Today pretty much HAD to be easier than yesterday; luckily, that was the case. We were very slovenly: got up at 7:30. Regular morning routine (I'll describe some of these things after I get home). We were both pretty tired and neither one of us was firing on all cylinders so we had a bit of miscommunication. A bit of frustration and worked through well and easily. Now I know what "sticky socks" means (socks with rubber bottoms for traction).
After breakfast we talked about my going to the Arizmendi bakery to get their amazing scones, especially the corn cherry (if you live in Oakland, they're not that good - if you live anywhere else, they are the best! Don't tell the locals - more competition). I figure I'll go get them during his PT. I'm standing there in my jammies and Chester says "Go quickly!" I stared at him, a bit confused. He's telling me to get the hell over there now? Uh, who died and made you queen? He saw my confusion; took a breath to add an important word: "They go quickly!" Ah, he wasn't being prescriptive, he was being descriptive. We laughed. So I went and got a dozen of them (about 2/3 of what was there - I was beginning to get looks).
That interchange is a bit descriptive of Chester's communication at this point. He's still working on the brain connection to the mouth, so leaves out some words or does other transmutations. Look at the word "statistics." If he doesn't concentrate, it comes out "stastistics." Tricky word, when you think about it.
Doreen came at 9 for PT. Chester wasn't as strong as on Tuesday, and with the grueling day we had yesterday, this was not a surprise. He still had a good workout. I worked on the computer, updating the schedule and making many phone calls for logistics, appointments, etc. Marilyn stopped by and we went outside for a chat. I had a good cry with her, and she gave me great support. We talked about logistics and plans.
Gil and JD dropped some sandwiches off. Chester had ST at 11. Chrys arrived. Marilyn came back with a new winged-back chair for Chester. (Are you getting that it was Grand Central here? It was, but now this seems quite normal.) Chrys and I had a nice chat. The day is clouding in my mind now... We are getting some systems in place for online calendars for the Healthy Chester team to coordinate, as well as a shared contact list, etc. There are a few more things I want to put in place, and it's a race against time. It literally still feels like Tuesday to me - it's gonna take a while to get back to my day-to-day life after this trip.
Chrys kindly warmed some of Gil's leftover cocque au vin for us, as well as the last of the wonderful homemade apple pie (I forgot who Chester said made it - THANKS!). Jaime dropped by with laundry just in time to see us off. Oh, he also dropped off the medicine to take care of the thrush that Chester has as a result of the chemo and/or radiation and/or steroids.
We went to Johnston Medical Supplies to get Chester fitted with compression socks. The kind he was wearing before are really for nighttime wear - they aren't tight enough. Terry, a wonderful older woman of Chinese descent, with a chipper, helpful air about her got him all set up. She told us everything we needed to know about compression socks, how to get them on, measurements, etc. We left knowing we got the best choice. I also picked up a liquid medicine delivery thingie, and only discovered it was made to look like an alligator when Chrys pointed it out. I should have gotten chester the eye patch - it would so have helped that "scare small children" look he's cultivating right now.
Marilyn called to say she got 4 body pillows that Chester wanted. Cool. We get lots done!
When I made that appointment I was told it would take 20 minutes. I added 10 on for buffer. Right. We were 15 minutes late for the Lovenox shot at Alta Bates, but it's not a biggie, since it's just a shot. We got some questions answered, primarily about the blood clots - is massage ok? (not on the arm) PT? (sure) etc. The level of service and competence at that place is just phenomenal. If I ever get sick I may move here (Leslie - I'm not asking for it!). My lesson for the day - add LOTS more buffer time for appointments when health care is involved. Hurry up and wait is the rule. Nay, it's the law.
We got home and did some straightening (if you will) before Joe and Jane stopped by for dinner. Chrys organized the sushi order, then she and Joe went to get it. Chester, Jane & I had a nice chat during that time. They brought back enough sushi to fit in a small dump truck. Have I mentioned that I've seen more sushi eaten this week than I have in probably the last six months? And Chester can put away enough to kill a horse. Am I mixing too many metaphors for you? Should I put them on the slow boat somewhere? Damn, another slipped out.
Joe took Chrys & Jane home. A bit of futzing with emails, etc., then we begin to figure out how to work with these big pillows. Marilyn was unable to get cases for them, so I put two regular ones on each - one on each end. Perfect. I acted as stunt double for Chester while the two of us figured out how these would work on the bed - the most important and fussiest part is figuring out how to get the legs elevated comfortably [I actually practiced having my right arm and leg be limp and moving them around. It sucks big time]. Great teamwork - we bounced it back and forth until we figured it out. How the hell did it get to be 10:30? It was just 9! We got ready and I helped Chester shave. I prettied up his mustache and goatee, too. Pretty dapper, if I may say. Doing this was a wonderful intimate time to spend with him. We were both pretty tired again so communication (on both sides) was a bit fuzzy. By this time looks and telepathy are completing many communications. It's odd that while I understood what he meant by a hand gesture and sound effect, I wouldn't be able to put it into words - I just understood what he meant. Does that make sense?
We got him undressed for bed. The new compression socks are AMAZING. His left (more useful) leg is pretty darn near normal. The right leg is a LOT better. Still some swelling, and so much better. Walking will be much easier, which will lead to more walking, which will lead to less swelling, etc. It's wonderful to have some things that cascade for the better. When we put the AFO (ankle brace) on this morning, two of my fingers fit in snugly. Tonight I could put most of my hand in by the calf, and four fingers in at the ankle - that should give you a sense for the improvement.
I heard Chester's snores before I even started this entry. Man, after midnight again - how did that happen? Oh well, we are REALLY going to be slovenly in the morning - we just need to be ready for a rehab team meeting at 9 am by telephone.
I am in this moment sitting here in awe of the people who surround Chester and are creating the container that is making it possible for him to have what is really a remarkable rehabilitation. I don't want to name names because there are too many and I don't want to leave anyone out - and I know I haven't met but a fraction of the larger team that supports him! The primary care folks you know because you've been hearing about them in here. As I look at each person it's a bit like watching a movie (a B-movie actually) where a team is made up of JUST the right people with JUST the right combinations of skills and attributes so that their strengths and weaknesses (hey, we all got 'em) match up in JUST the right way so that later in the movie the heart-rending music can have everyone in the theatre balling their eyes out while the montage happens of the training and health, etc., etc., etc. I think you get what I'm saying. And right after that amazed feeling comes a feeling of deep sadness for all the people in the world who do NOT have this type of network, who do NOT have this container so they CANNOT have an amazing rehabilitation. Would that one day everyone gets what they need. Hold that vision with me, huh?
OK, enough of my philosophizing and fantasizing. Off to sleep. Please keep the communications coming in. Chester is not able to respond to them all - literally too busy believe you me. Also, he's not tracking details/memory stuff at 100%. He opens and reads his own email - we don't help him with that. As has been described by others in here for months, his primary care team is taking care of most of the details/memory stuff so he can focus on recovery. Like right now he's focusing on sawing down another of those trees. I hope the foundation of this building is firmly seated and they screwed in all the screws tightly... As I said, he does read all of his own emails, and when there's time dictates responses to one of us (there has literally not been enough time for one response while I've been here). He has a one-handed keyboard on order, and that will take time to learn. I have no idea how proficient he'll be at it. And again, I hate to sound like the broken record (damned metaphors just won't quit), there isn't enough time for lots of communications from him. I'm being repetitive. Edit psychosis mixed with fatigue - my apologies.
OK, I'm shutting up now. Good night.
After breakfast we talked about my going to the Arizmendi bakery to get their amazing scones, especially the corn cherry (if you live in Oakland, they're not that good - if you live anywhere else, they are the best! Don't tell the locals - more competition). I figure I'll go get them during his PT. I'm standing there in my jammies and Chester says "Go quickly!" I stared at him, a bit confused. He's telling me to get the hell over there now? Uh, who died and made you queen? He saw my confusion; took a breath to add an important word: "They go quickly!" Ah, he wasn't being prescriptive, he was being descriptive. We laughed. So I went and got a dozen of them (about 2/3 of what was there - I was beginning to get looks).
That interchange is a bit descriptive of Chester's communication at this point. He's still working on the brain connection to the mouth, so leaves out some words or does other transmutations. Look at the word "statistics." If he doesn't concentrate, it comes out "stastistics." Tricky word, when you think about it.
Doreen came at 9 for PT. Chester wasn't as strong as on Tuesday, and with the grueling day we had yesterday, this was not a surprise. He still had a good workout. I worked on the computer, updating the schedule and making many phone calls for logistics, appointments, etc. Marilyn stopped by and we went outside for a chat. I had a good cry with her, and she gave me great support. We talked about logistics and plans.
Gil and JD dropped some sandwiches off. Chester had ST at 11. Chrys arrived. Marilyn came back with a new winged-back chair for Chester. (Are you getting that it was Grand Central here? It was, but now this seems quite normal.) Chrys and I had a nice chat. The day is clouding in my mind now... We are getting some systems in place for online calendars for the Healthy Chester team to coordinate, as well as a shared contact list, etc. There are a few more things I want to put in place, and it's a race against time. It literally still feels like Tuesday to me - it's gonna take a while to get back to my day-to-day life after this trip.
Chrys kindly warmed some of Gil's leftover cocque au vin for us, as well as the last of the wonderful homemade apple pie (I forgot who Chester said made it - THANKS!). Jaime dropped by with laundry just in time to see us off. Oh, he also dropped off the medicine to take care of the thrush that Chester has as a result of the chemo and/or radiation and/or steroids.
We went to Johnston Medical Supplies to get Chester fitted with compression socks. The kind he was wearing before are really for nighttime wear - they aren't tight enough. Terry, a wonderful older woman of Chinese descent, with a chipper, helpful air about her got him all set up. She told us everything we needed to know about compression socks, how to get them on, measurements, etc. We left knowing we got the best choice. I also picked up a liquid medicine delivery thingie, and only discovered it was made to look like an alligator when Chrys pointed it out. I should have gotten chester the eye patch - it would so have helped that "scare small children" look he's cultivating right now.
Marilyn called to say she got 4 body pillows that Chester wanted. Cool. We get lots done!
When I made that appointment I was told it would take 20 minutes. I added 10 on for buffer. Right. We were 15 minutes late for the Lovenox shot at Alta Bates, but it's not a biggie, since it's just a shot. We got some questions answered, primarily about the blood clots - is massage ok? (not on the arm) PT? (sure) etc. The level of service and competence at that place is just phenomenal. If I ever get sick I may move here (Leslie - I'm not asking for it!). My lesson for the day - add LOTS more buffer time for appointments when health care is involved. Hurry up and wait is the rule. Nay, it's the law.
We got home and did some straightening (if you will) before Joe and Jane stopped by for dinner. Chrys organized the sushi order, then she and Joe went to get it. Chester, Jane & I had a nice chat during that time. They brought back enough sushi to fit in a small dump truck. Have I mentioned that I've seen more sushi eaten this week than I have in probably the last six months? And Chester can put away enough to kill a horse. Am I mixing too many metaphors for you? Should I put them on the slow boat somewhere? Damn, another slipped out.
Joe took Chrys & Jane home. A bit of futzing with emails, etc., then we begin to figure out how to work with these big pillows. Marilyn was unable to get cases for them, so I put two regular ones on each - one on each end. Perfect. I acted as stunt double for Chester while the two of us figured out how these would work on the bed - the most important and fussiest part is figuring out how to get the legs elevated comfortably [I actually practiced having my right arm and leg be limp and moving them around. It sucks big time]. Great teamwork - we bounced it back and forth until we figured it out. How the hell did it get to be 10:30? It was just 9! We got ready and I helped Chester shave. I prettied up his mustache and goatee, too. Pretty dapper, if I may say. Doing this was a wonderful intimate time to spend with him. We were both pretty tired again so communication (on both sides) was a bit fuzzy. By this time looks and telepathy are completing many communications. It's odd that while I understood what he meant by a hand gesture and sound effect, I wouldn't be able to put it into words - I just understood what he meant. Does that make sense?
We got him undressed for bed. The new compression socks are AMAZING. His left (more useful) leg is pretty darn near normal. The right leg is a LOT better. Still some swelling, and so much better. Walking will be much easier, which will lead to more walking, which will lead to less swelling, etc. It's wonderful to have some things that cascade for the better. When we put the AFO (ankle brace) on this morning, two of my fingers fit in snugly. Tonight I could put most of my hand in by the calf, and four fingers in at the ankle - that should give you a sense for the improvement.
I heard Chester's snores before I even started this entry. Man, after midnight again - how did that happen? Oh well, we are REALLY going to be slovenly in the morning - we just need to be ready for a rehab team meeting at 9 am by telephone.
I am in this moment sitting here in awe of the people who surround Chester and are creating the container that is making it possible for him to have what is really a remarkable rehabilitation. I don't want to name names because there are too many and I don't want to leave anyone out - and I know I haven't met but a fraction of the larger team that supports him! The primary care folks you know because you've been hearing about them in here. As I look at each person it's a bit like watching a movie (a B-movie actually) where a team is made up of JUST the right people with JUST the right combinations of skills and attributes so that their strengths and weaknesses (hey, we all got 'em) match up in JUST the right way so that later in the movie the heart-rending music can have everyone in the theatre balling their eyes out while the montage happens of the training and health, etc., etc., etc. I think you get what I'm saying. And right after that amazed feeling comes a feeling of deep sadness for all the people in the world who do NOT have this type of network, who do NOT have this container so they CANNOT have an amazing rehabilitation. Would that one day everyone gets what they need. Hold that vision with me, huh?
OK, enough of my philosophizing and fantasizing. Off to sleep. Please keep the communications coming in. Chester is not able to respond to them all - literally too busy believe you me. Also, he's not tracking details/memory stuff at 100%. He opens and reads his own email - we don't help him with that. As has been described by others in here for months, his primary care team is taking care of most of the details/memory stuff so he can focus on recovery. Like right now he's focusing on sawing down another of those trees. I hope the foundation of this building is firmly seated and they screwed in all the screws tightly... As I said, he does read all of his own emails, and when there's time dictates responses to one of us (there has literally not been enough time for one response while I've been here). He has a one-handed keyboard on order, and that will take time to learn. I have no idea how proficient he'll be at it. And again, I hate to sound like the broken record (damned metaphors just won't quit), there isn't enough time for lots of communications from him. I'm being repetitive. Edit psychosis mixed with fatigue - my apologies.
OK, I'm shutting up now. Good night.
posted by Jay Edgar at 11:29 PM
0 Comments:
Post a Comment
<< Home