Headnote
It’s been a year. And the help from the posters here has been immeasurable. I want to keep my original posting of the events of that time available - mainly for selfish, personal reasons. But also to tell my story. So I’m going to repost a few threads from the old boards.This is partly a memorial and partly a tribute to those who helped me though probably the hardest couple of weeks of my life. So pretty please treat it as such. I don’t need further condolences - the time for that has passed. But I also don’t want to forget these events. Hence, the reposting to hopefully keep these writings for posterity.
There is no reason to respond, although further responses are welcome. My only request is that you read through all of these reposts before responding to any of them. Lots of questions were answered, some in the thread and some in later threads. I’m not sure how many there will be, but there will be several.
There are also several side issues brought up. I’m leaving those in place as originally posted. If you want to discuss one of those side issues, I’d ask that you please start a new thread.
Author: ptheland
Subject: Tuesday update
Date: 11/2/2021 6:05 PM
No. of Recommendations: 7
I’ve finally been fever-free for 24 hours, so could get in to the hospital to visit DW. She was resting far more comfortably, with the aid of the in-hospital only pain meds. After this morning’s rounds (which I missed), her Dr. is having her transferred out of the ICU into the telemetry floor. She’s been stable since admission, so the probability of severe adverse effects is now low enough to get her into a less-restrictive setting.
She recognized me right away, and was clearly happy to see me. Did a quick facetime call with DS so she could see him as well. I’ll bring her phone to her on the next visit so she can communicate with us. The mental stimulation of playing her games might also help. So far, it’s been pretty much sleeping, so the phone didn’t matter.
I had a pre-op appointment yesterday for my upcoming hernia surgery. The first questions posed by the staff were the usual covid screening questions. Of course, I answered truthfully about having a fever and a cough recently. That bought me a private waiting room, a consult with the Dr. (who is also DW’s PCP, which generated a couple of questions about how she’s doing), and yet another covid test. A throat swap this time. So instead of triggering sneezing and coughing, it triggers a gag reflex. I’m not sure which is better. When can they create covid test by urinalysis? If there’s one thing us older guys are good at, it’s peeing. Not a lot at a time, mind you, but we never turn down the chance to go.
And I got a deferral of the pre-op exam. Can’t blame the Dr. for wanting to be sure I was covid-free before letting me run around the office for a battery of various tests. He’s got to keep his staff safe as well as his patients. That test is already back. Negative again. So I’ll see him tomorrow and we’ll try again.
It’s not just the fever that is gone. The sore throat is improving as well. Still a bit of lingering cough, though. That is a relief.
Bottom line, DW is stable to improving. Moving to less-restrictive environment soon. If they can manage her pain without the IV painkillers, I suspect she’ll be heading back home. Again guessing, probably a day or two minimum on the telemetry floor, which would put her discharge on Thursday at the earliest.
–Peter
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Author: jrdown
Date: 11/2/2021 9:04 PM
No. of Recommendations: 0
This is great news all around!
Robyn
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Author: 1poorguy
Date: 11/2/2021 9:50 PM
No. of Recommendations: 2
FWIW, 1poormom cracked her hip (not an actual break, just a crack). She was in the hospital for a few days, and then they moved her to a rehab facility (SNiF). She was there for at least a couple of weeks.
I would assume they won’t be sending your wife home, but to a SNiF for rehab and PT. If they aren’t doing that, I would wonder why. Maybe there is a good reason, but pro rehab people likely would be of benefit to her.
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Author: ptheland
Date: 11/2/2021 11:55 PM
No. of Recommendations: 1
I would assume they won’t be sending your wife home, but to a SNiF for rehab and PT.
I hadn’t thought about that as a possibility. The nursing staff has been great so far, but I really need to talk to the Drs about her treatment plan and where we go from here.
I’m sure a bit of PT would help, but she’s been horribly non-compliant with it in the past. She does a session or two, then starts complaining that it’s too hard, or that it hurts, or that she’s too tired, or that she can’t go on days that end in “y”. (OK - that last one was made up, but is a rough approximation of the problem.) She’ll find any excuse to avoid exercise, which is how she got into the condition she’s in.
So a bit of time with people that aren’t softies like might get her actually doing the PT she needs and could be quite the benefit.
–Peter
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Author: sheila727
Date: 11/3/2021 12:11 AM
No. of Recommendations: 2
I’m sure a bit of PT would help, but she’s been horribly non-compliant with it in the past. She does a session or two, then starts complaining that…
Have you ever been able to try doing regular gentle exercises with her at home? Working with the stretchiest therabands, based on guidance from a PT? I realize that this would be one more thing that you’d have to be responsible for. But if doing it at home, and with you, would be more appealing to her, and get her started doing more with her body—maybe it would be helpful. And have some value for you too.
What do YOU do for exercise? It’s so valuable psychologically as well as physically. And an irreplaceable way to get rid of tensions, even if it’s just temporarily.
=sheila
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Author: alstroemeria
Date: 11/3/2021 10:56 AM
No. of Recommendations: 0
I’m sure a bit of PT would help, but she’s been horribly non-compliant with it in the past. She does a session or two, then starts complaining that it’s too hard, or that it hurts, or that she’s too tired, or that she can’t go on days that end in “y”.
Just like my mom. And now she’s wheelchair-bound and was demoted from assisted living to nursing home a year ago (however, she is almost 96).\
My brother complies at every PT session (but cancels once in a while), but never continues to exercise at home. So he’s pretty much wheelchair bound at 70, even though PT gets him walking with a hemi-walker and his aide would love to help him do that 
I don’t understand this. Fear? Laziness? Resentment at having to make a hard effort? I’m as fearful, lazy, and resentful(!) as they come, but I’ve actually injured myself being too gung-ho exercising. I fear the wheelchair, especially so having been in one for months in 2020 (severely broken leg and torn ligaments). Maybe those who know they have live-in caregivers just push their self-reliance onto others. I have no-one to take care of me but me, so…even when I “just don’t WANNA” or feel I deserve a break, I do it. Heck, I did it this monring after wrangling the hubster into the shower (not easy, but now that he sleeps every night in his clothes, and wears the same underpants & everything for 2 whole days, he GOTTA wash all over! Hey, I sleep with him!).
I rode my exercise bike as usual as soon as I got dressed this morning and then did my cat-cows on the bed. If I don’t, my joints and back start barking at me after just a few days. Mom & bro refuse to exercise and treat the resulting aches & pains with drugs. Think pain-killers might relate to their falling periodically? Slippery slopes and all that… Bro is lucky he never broke anything when he fell…so far.
uh…sorry for the long tangent!!
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Author: bighairymike
Date: 11/3/2021 3:09 PM
No. of Recommendations: 0
If there’s one thing us older guys are good at, it’s peeing. Not a lot at a time, mind you, but we never turn down the chance to go. - ptheland
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LOL. Yep.
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Author: ptheland
Date: 11/3/2021 6:49 PM
No. of Recommendations: 0
What do YOU do for exercise?
Weightlifting. 100 lb deadlifts, for the most part. I usually do single lifts in sets of two or four, often with a carry of 10 to 20 steps for some additional aerobic work.
That’s more than likely how I got my hernia.
—Peter
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Author: inparadise
Date: 11/3/2021 8:00 PM
No. of Recommendations: 0
I don’t understand this. Fear? Laziness? Resentment at having to make a hard effort?
Depression?
IP
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Author: Howie52
Date: 11/3/2021 8:54 PM
No. of Recommendations: 2
"My brother complies at every PT session (but cancels once in a while), but never continues to exercise at home. So he’s pretty much wheelchair bound at 70, even though PT gets him walking with a hemi-walker and his aide would love to help him do that
I don’t understand this. Fear? Laziness? Resentment at having to make a hard effort? I’m as fearful, lazy, and resentful(!) as they come, but I’ve actually injured myself being too gung-ho exercising."
No two people will ever respond the same to pain. Routine pain can cause some folks to withdraw
from movement. Back, hip, knee, shoulder, neck or headache can cause one person to hide from
the world while another will try to fight through and against the world. What a person will do
with a therapist may not ever be possible to the same person on their own - or with family.
And then add in depression from having to always feel pain - always - even on the good days.
DW is working hard to lose weight right now - but she can’t see improvements she makes and I
suspect that is only because of pains she fights. Arthritis in the hips, deterioration in the
lower spine. She recovered from rotator-cuff surgery and went through the PT - and still does
a few of the exercises when she complains about shoulder or upper back pains - but only when
reminded. The idea of fighting pains through movement rather than through taking pills or
shots (with needles as opposed to glasses)just means more pain unless she thinks about what
she is doing and what the risks are.
Like most things in life - getting a person to think about their own situation is difficult
and not the first choice that comes to a person in pain.
Howie52
Helping people is hard - helping oneself is even harder - but recognizing what might be a help
versus what might be harmful seems to be a struggle for a lot of folks.
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Author: ptheland
Date: 11/3/2021 9:19 PM
No. of Recommendations: 1
I don’t understand this. Fear? Laziness? Resentment at having to make a hard effort?
To oversimplify, there are two kinds of people in the world.
No pain, no gain! – And – No pain, good!
Those who are motivated by a bit of discomfort believing that there will be a long term benefit are self-motivated to work at exercise, and probably get a bit of endorphin rush from that exercise. Others may know that exercise is good for them, but simply don’t get enough endorphins from exercising to offset the pain of exercise, or to give them the motivation to exercise through the pain they’re feeling before even starting exercise.
My wife is firmly in that latter group. When she’s in pain, she sleeps. She doesn’t want to exercise, as that makes the pain worse.
I’m kind of the counter example to my oversimplification. I fully understand the long term benefits of exercise and know I need to do more. But I don’t get any good feelings from the exercise, so I have to use logical willpower rather than the more immediate pay off of an endorphin boost to motivate my exercise. I don’t find it painful, but I don’t enjoy it, either. And it takes too much consistent work over at least a couple of weeks to start seeing the benefit in my weight, which is my main goal. So I tend to run out of will power before I start seeing what I really want from exercise - weight loss.
–Peter
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Author: sheila727
Date: 11/3/2021 10:10 PM
No. of Recommendations: 2
but simply don’t get enough endorphins from exercising to offset the pain of exercise, or to give them the motivation to exercise through the pain they’re feeling before even starting exercise.
When you mentioned “endorphins,” that gave me a thought. Endorphins are endocannabinoids. The endocannabinoid system involves a bunch of neurotransmitters and receptors on pretty much every organ, especially the nervous system. The function is to keep things balanced. CBD oil—a cannabinoid—is able to normalize such a variety of phenomena—anxiety, panic attacks, stage fright, depression, epilepsy, concussion damage, pain, etc, etc—because it acts through this system. And when you said endorphins—and remembering that DW is suffering brain dysfunction from the brain cancer and chemo that occurred when she was a child…I wonder if a good CBD would be helpful for her. If you think iti might be something worth trying, I’ll give you a recommendation for several excellent companies to look into.
Re your mechanical, pleasureless feelings about your own exercise…have you tried alternatives? Exercise bike? Treadmill? And do something simultaneously—audio or visual or both—that you enjoy?
=sheila
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Author: inparadise
Date: 11/4/2021 8:47 AM
No. of Recommendations: 1
But I don’t get any good feelings from the exercise…
I find exercise for the sake of exercise to be super boring and requires a will of iron to do. Pleasurable exercise, like the 2 hours a day I play of pickleball, or hiking with DH, is fabulous. A day without pickleball is a day you don’t want to be around me. I need my endorphin fix. Pickleball players for the most part joke about their “addiction,” but there is a significant basis in fact with those jokes.
my weight, which is my main goal
What you put in your mouth is more important for controlling weight than exercise is. Important beyond calories in calories out. Go to the Low Carb Way of Eating board if you want to have a discussion on that. Since you say your wife is also needing to lose weight but doesn’t want to move, her way of eating may have a bigger impact on her success. The term diet with low carb is a misnomer…it’s a lifestyle change and one that I’ve been living for more than two decades. You will see some of the same posters as here. Not a lot of action on the board since most of us have been doing this for a long time, but we are always happy to answer questions. https://boards.fool.com/low-carb-way-of-life-115811.aspx?mid…
IP
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Author: 1poorguy
Date: 11/4/2021 11:50 AM
No. of Recommendations: 0
I’m with you. I hate exercise for exercise’s sake. It’s one thing to hike to a scenic waterfall. I like that. I’ll load my camera pack and walk 3 or 4 miles to get there. But hiking just to hike, with no pay-off (scenery) at the end? I have a lot of trouble motivating for that. And a gym? I was only successful at a gym when I had a personal trainer, and an appointment with that trainer. That made me show up. But exercise is mind-numbingly boring. I’d rather watch NOVA, or read TMF (including Saul’s board), or almost anything else.
Like you, I have to force myself to do it. Lately I’ve been trying to walk most mornings with a small pack on my back to increase my bone density. Problem is that the neighborhood is boring. Especially when you see the same things for the 20th time. I haven’t gone yet this week (though, in my defense, we had early morning appointments every day so far).
I don’t fear the pain at all. I know it will pass if my exercise is moderate (i.e. I’m not doing damage).
1poorguy
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Author: 1poorguy
Date: 11/4/2021 12:02 PM
No. of Recommendations: 0
Hey, sheila! You should watch a recent NOVA. It dealt with cannabinoids, and the entire system. It was very interesting. Turns out you CAN get addicted to cannabis, but it’s symptoms/withdrawal are different. It’s also very bad for developing brains (i.e. children). But appears to be very beneficial for some specific things. Including autism.
They’ve had trouble studying it because of the “war on drugs”.
Also, while it’s now “legal”**, it’s very difficult to obtain pharmaceutical grade product that would have a tightly-controlled strength. Right now people are volunteering for studies, in effect, because they really don’t know. So people try stuff, report whether it works, and try other stuff. Not even close to a double-blind. Though they are doing a blind study for autism.
I think you’ll find that program interesting.
1poorguy (full disclosure: 1poorlady had CBD oil during chemo; it did help take the edge of the nausea, but wasn’t a panacea)
**Not really…still a controlled substance by the feds, so they can arrest you even if it’s “legal” in your state.
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Author: sheila727
Date: 11/4/2021 1:47 PM
No. of Recommendations: 0
a recent NOVA. It dealt with cannabinoids, and the entire system. It was very interesting. Turns out you CAN get addicted to cannabis,
I think you’re making a mistake here. I was talking about CBD—cannabidiol—which IS NOT CANNABIS. Cannabis is marijuana. Cannabidiol is one component of marijuana, and is taken from the hemp plant, not from the marijuana plant, and contains only the barest trace of THC, which is what provides the psychoactive properties of marijuana. Long-term marijuana use is associated with various negative changes, including increased anxiety and anger.
In terms of 1poorlady’s disappointing experience with CBD oil during chemo—do you know what brand she was using? There is a huge range of adequacy.
=sheila
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Author: 1poorguy
Date: 11/4/2021 4:11 PM
No. of Recommendations: 0
Watch the program. Trust me.
They were isolating specific chemicals for different purposes, though mostly they talked about CBD and THC. And they discussed the endocannabinoid system, as you did, though in more detail (with fancy graphics).
No, I’m pretty sure I’m not making a mistake. Perhaps I’m not communicating it well, but the program is relevant.
…do you know what brand she was using? There is a huge range of adequacy.
That was also a point made in the program. There is not uniformity, in general, among products. And no dosage instructions. I believe there was a factory in Britain that was making pharma-grade product; consistent in strength and purity. Not so much here. But most product you don’t really know how strong it is, or if it’s even consistent from bottle to bottle.
I’d have to drag out the bottle. As I said, it did take the edge off. So it was beneficial. She took it for the few months she was on chemo. She hasn’t touched it since.
We really need to ramp up the studies on the uses of cannabis oils. Figure out what is real, and also what dosages should be applied. They mentioned autism, PTSD, and some other ailments. But without studies and regulation, it is the wild west out there.
1poorguy
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Author: sheila727
Date: 11/4/2021 4:49 PM
No. of Recommendations: 1
Watch the program. Trust me.
They were isolating specific chemicals for different purposes, though mostly they talked about CBD and THC. And they discussed the endocannabinoid system, as you did, though in more detail (with fancy graphics).
No, I’m pretty sure I’m not making a mistake. Perhaps I’m not communicating it well, but the program is relevant.
My introduction to all of this was at a medical meeting, at a talk given by a neurologist who uses CBD a great deal in his practice. And he had given dosing instructions. Cannabidiol is not addictive. Cannabis is. Trust me. 
Brands that you can trust here for quality and uniformity are Plus CBD, Charlotte’s Web, Ojai Energetics. And I’ve very recently learned that Ojai Energetics has a minute fraction of the trace THC that Plus CBD has, so I will be trying that. Hopefully it’ll reduce or eliminate the miserable pain I have now in the ankle that will be replaced early next year.
If I get a chance, I’ll watch the show.
=sheila
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Author: 1poorguy
Date: 11/4/2021 5:32 PM
No. of Recommendations: 0
If I get a chance, I’ll watch the show.
You should. It wasn’t “anti”. It laid out the potential benefits, and how they likely work, but also cautioned that none of this is regulated, so it’s a lot of guessing (by lots of unqualified people).
I wasn’t aware our entire system is filled with receptors for several of the molecules in cannabis. Nor that there was some promising work with seizures and autism.
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Author: sheila727
Date: 11/4/2021 6:17 PM
No. of Recommendations: 0
I wasn’t aware our entire system is filled with receptors for several of the molecules in cannabis. Nor that there was some promising work with seizures and autism.
Yes—it’s fascinating. That talk had been a real eye-opener. And in terms of seizures, it’s already been FDA approved for pediatric epilepsy.
The company (CV Sciences) that manufactures the product that my husband used to use, and that I used once with stunning benefit (pain evaporated in 10 minutes and never returned), has a superb product and is very involved in research. They are not called CV. Charlotte’s Web is family owned—a whole bunch of brothers (in Colorado I think). They grow their own hemp so that they can control things from the very start. Among the top quality products. And Ojai Energetics.
=sheila
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Author: Howie52
Date: 11/5/2021 5:40 PM
No. of Recommendations: 1
“Brands that you can trust here for quality and uniformity are Plus CBD, Charlotte’s Web, Ojai Energetics. And I’ve very recently learned that Ojai Energetics has a minute fraction of the trace THC that Plus CBD has, so I will be trying that. Hopefully it’ll reduce or eliminate the miserable pain I have now in the ankle that will be replaced early next year.”
DW has used Medterra, TheSocialCDB (manufacturer/distributor is Sentia Wellness Inc) and one other
that she found did her shoulder and back pain some good.
She also has had some success with IcyHot Gel. She uses Voltaren for the arthritis effected joints
and seems to feel that she gets some relief.
I have used Biofreeze on muscle pains/stretched muscles with some success.
Howie52
DW has also had luck with 650 mg Tylenol - but you need to be careful about taking this
high a strength dosage.
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Author: Howie52
Date: 11/5/2021 5:59 PM
No. of Recommendations: 1
Also - forgot to post this link to the Mayo Clinic comments on CDB oils
https://www.mayoclinic.org/healthy-lifestyle/consumer-health…
“A recent study of 84 CBD products bought online showed that more than a quarter of the products contained less CBD than labeled. In addition, THC was found in 18 products.”
When dealing with pain, people try things. We talked to the pharmacist DW uses about this and
he was OK with only two of the items - and they were lower dosages of CDB oil rather than the
higher ones. I can’t say if there was really any basis for his recommendations - but DW does seem
to get some relief.
Howie52
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Author: 1poorguy
Date: 11/5/2021 7:33 PM
No. of Recommendations: 1
Exactly, Howie. It’s not regulated, and a lot of manufacturing is inconsistent. So it can vary from batch to batch, or even bottle to bottle. And no one is checking.
That point was made in the program also.
I get the pain (or other issue) problem. 1poorlady had never touched drugs (except alcohol) her entire life. She doesn’t even like taking Tylenol or ibuprofen. But she tried the CBD oil, and it did take the edge off so that she at least could eat and not always feel like she was going to vomit.
It was labeled “Select”, and apparently was actually 4:1 CBD:THC. She hasn’t touched the bottle since ending chemo. It might even be expired by now.
1poorguy
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Author: alstroemeria
Date: 11/8/2021 8:19 PM
No. of Recommendations: 2
I always read threaded so sometimes it takes awhile (if ever) before I get back to a long thread. Seems I missed some good stuff in this one!
I’ve never experienced the least bit of pleasure during any kind of exercise. The onyl “endorphins” I get re exercise is when I’m done and mentally pat myself on the back–and over time, feeling stronger/more flexible/less winded. As I ride my exercise bike, I’m thinking… 1/10th done, 1/5th done, 2/3 done, etc. I stop if it hurts too much as I’ve permanently injured myself by not doing so.
I think I get endorphins from cooking, listening to music, and reading