RVInit wrote: ↑Sat Feb 11, 2023 4:27 pm
I've been getting supplies for mom's care from Carewell. They carry lots of brands of all of the necessary supplies. And their delivery turnaround time is very fast. I bought some reusable bed pads and then decided to buy waterproof fabric and make my own. I use a large and small bed pad and then double over a towel and her night time brief leaks enough that I have to roll up the pads and towel, but her sheets are dry. We bought an electric bed because she needed changing so many times per day and throughout the night that trying to change her in a normal bed just killed my back. The first bed we ordered was supposed to be here before she got home, but they kept giving up updated delivery dates and I finally asked them what the fuck bed can you ship out TODAY - just substitute. We ended up with a decent electric bed but my freaking back was just about gone by the time it came in.
I set up once a month delivery of briefs, gloves, large size wet wipes (they are much larger than what you buy at the grocery store, those are useless for serious care for incontinence). butt paste, and other supplies. She resisted every attempt to become more self sufficient, but I stuck with it enough to make very slow progress. Just this week I finally got her to be willing to get out of bed herself and get on her commode and then back in bed by herself. She resisted every small bit of progress every step of the way and can't believe I finally got her to that point. I'm pretty tenacious, though, and was able to out-stubborn her.
Kriselda Gray wrote: ↑Sat Feb 11, 2023 9:32 am
Are nitrile gloves stretchy? I know there's some kind that isn't, and neither of the guys can use those, but they've been using latex for years now without any problem, so hopefully that'll continue.
Not as stretchy as latex, I think, which probably means it's more important to work out which size suits you. It depends how picky you are and what you're doing: most of my activities don't require precision handling so I just grab gloves from the "large" box because they don easily whereas "medium" is better for handling small items.
If you're buying them off a shelf, there is often a size guide printed on the side that u you can hold your hand against.
D is still doing very well, his oxygen requirements have lessened over the past week and he's moving around on his own quite well. Saw the doc today and, as expected, his white count is dropping again due to the chemo regimen he just finished. Now he rests for a bit and we cross our fingers it rises back to low-normal so he can start treatment #4 in early March. Since said treatment is being managed by Moffitt in Tampa and administered through a local cancer clinic, when I asked the doc today how many treatments he could expect, she said it was up to Moffitt but she'd try to get a hold of him today and see if she can get an estimate. She said it could be as many as 6-8 more, two weeks on, two weeks off. D was not pleased. But he's almost back to his normal self personality-wise, thankfully. I can't imagine what he's been going through and I've been very patient, but sometimes, when someone is gravely ill and in pain, and you're the only one there, they can be a bit....short. Let's hope the worst of that is over. Let's hope the worst of all of it is over, (although when/if he gets a bone marrow transplant, it's possible he'll be miserable for a while with that. I guess I should read up on it so I know more.
That's mostly pretty good news. I hope the rest goes well. I understand the frustration, particularly when it all lands on you alone.
"Choose your leaders with wisdom and forethought. To be led by a coward is to be controlled by all that the coward fears… To be led by a liar is to ask to be told lies." -Octavia E. Butler
Slim Cognito wrote: ↑Wed Feb 22, 2023 5:27 pm
... I've been very patient, but sometimes, when someone is gravely ill and in pain, and you're the only one there, they can be a bit....short.
Guilty as charged.
... and us guys, honestly, we don't mean to be short. But it's hard.
Tell him Foogie understands completely, but it's something we both have to work on.
Ol' Wifehorn sends you sebenty thousand eyerolls to help you deal with your codger. (Don't worry, she has more where those came from.)
We went for a ride,
We got outside,
The sand was hot,
She wanted to dance ...
"Mickey Mouse and I grew up together." - Ruthie Tompson, Disney animation checker and scene planner and one of the first women to become a member of the International Photographers Union in 1952.
Slim Cognito wrote: ↑Wed Feb 22, 2023 5:27 pm
I can't imagine what he's been going through and I've been very patient, but sometimes, when someone is gravely ill and in pain, and you're the only one there, they can be a bit....short.
Foggy wrote: ↑Wed Feb 22, 2023 5:51 pm
Guilty as charged.
... and us guys, honestly, we don't mean to be short. But it's hard.
I understand Slim, and can assure you it ain't just a guy thing. My Mrs can be the same way. Sometimes even a little mean. What she says sometimes to me, the doctors, the nurses, and plain old people we walk past puts me back on my heels. Her filters just disappear. The shut-up switch is gone. Later on the Real Mrs emerges embarrassed by the memory and apologetic for what she said.
I've done my best to keep my can of emotional teflon spray nearby so what she says doesn't stick. But, sometimes I miss a spot, and get a little sting. I just tell her I need a break, and will be back in a few minutes. That usually gets her attention. It's my way of telling her "I am your lifeline. Don't make me your gator."
D had his labs drawn today locally and a zoom meeting with Moffitt. They're thrilled with how much better he feels, acts and looks, but his labs are slow to recover from the last chemo treatment so they're pushing next week's treatment back (at least) a week. Right now he's been on a two weeks on/two weeks off regimen but Moffitt is looking into one week on, three weeks off because it drops his WBC and ANC to dangerous levels. They expected them to drop, just not that much, and it takes a while longer than expected to recover so hopefully this will be a viable alternative. Right now he's the Boy in the Bubble, which wasn't as bad when he felt bad, but now he feels better and wants to do things, but the world is too dangerous for him right now. We asked how many more of these treatments he could expect and was told this is his life now. The treatment is what keeps the AML under control so there is no end in sight, just making sure he has a good quality of life.
Sorry to hear he's having to be so restricted. I know what it's like to feel good enough to go somewhere or do something and not be able to. I'm really glad, though, that he's doing better and that you're getting some good news, at least! to both of you!
Happy for the good news! Hopefully, there will be more of that with time.
"Choose your leaders with wisdom and forethought. To be led by a coward is to be controlled by all that the coward fears… To be led by a liar is to ask to be told lies." -Octavia E. Butler
I’m just a few years too old to have taken to video games. I assumed they were a technology for other people. I never played one before VR but now I’m playing. The immersion is a joy—escapism at its best. I like one in which I mow down malfunctioning robots. Since I think and write about robo-envy, the dangerous cultish know-it-all appetite to be programmed to run the muck of life smoothly, the game resonates for me.
My daughter and I have face-to-face visits by VR too. Last week, we sat together in a plush, gorgeous old-time VR living room with a fire crackling in the fireplace, wainscotting, and a cat playing the window. When we wanted a change of scene, we moved the conversation to some rocks in a river in springtime Yosemite and then to a cozy snow campfire.
... now he feels better and wants to do things, but the world is too dangerous for him right now.
Oh man, that's not a good place. I mean, it's good he feels better, but not being able to do anything is just the worst. He wants to be riding a motorcycle, and who can argue with that?
On the bright side, the world is waiting for him.
We went for a ride,
We got outside,
The sand was hot,
She wanted to dance ...
I’m just a few years too old to have taken to video games. I assumed they were a technology for other people. I never played one before VR but now I’m playing. The immersion is a joy—escapism at its best. I like one in which I mow down malfunctioning robots. Since I think and write about robo-envy, the dangerous cultish know-it-all appetite to be programmed to run the muck of life smoothly, the game resonates for me.
My daughter and I have face-to-face visits by VR too. Last week, we sat together in a plush, gorgeous old-time VR living room with a fire crackling in the fireplace, wainscotting, and a cat playing the window. When we wanted a change of scene, we moved the conversation to some rocks in a river in springtime Yosemite and then to a cozy snow campfire.
Heard back from (D's) top doc in Moffitt (Tampa). I'd reached out via email because early in the treatment process there was talk of him eventually getting a bone marrow stem cell transplant in hopes of curing him. It's been months and when I'd asked PAs and the local oncologist how many more chemo treatments he could expect, I was getting vague, general responses. Secretly, I feared, because of all his complications, heart attack, pulmonary emboli, pneumonia and 24/7 oxygen requirement since his treatment began, he was no longer considered a viable recipient, but nobody wanted to say it out loud.
Damn! Sometimes I hate it when I'm right.
Now it's just a matter of living a life of quality. Who knows how long the chemo will be effective. Maybe years, maybe months. He's having a really hard time getting his WBC and his ANC up into a safe range where he can actually leave the house and, say, go to a restaurant. We had a short period of two weeks during the last chemo treatment when he was able to be in noncrowded situations, but then the chemo did its thing.* His numbers dropped dangerously low and they are very slow to recover. His next treatment has now been pushed back another week, but hopefully by Wednesday, he'll have reached a low normal WBC and can start again.
(long sigh)
*Its thing being killing the leukemia but the process drops the WBC so low any little germ could kill him. It's literally cancer of the immune system. Whenever I enter a store, I mask up and openly use sanitizer and wipes while standing in line and after checking out. Occasionally, I get a dirty look but I've mastered the hairy eyeball and, so far, nobody has dared cross me. I have no fucks left to give at this point.
I should add that many people have cheerfully held doors for me so I didn't have to touch it. I don't know if that was their intention or they're just polite, but I appreciate them.
I'm sorry for the bad news it's good you got them to tell you, though they should have just been straight with you and not made you worry and have to ask
Hang in there - sending love, blessings and what healing energy I can
"Choose your leaders with wisdom and forethought. To be led by a coward is to be controlled by all that the coward fears… To be led by a liar is to ask to be told lies." -Octavia E. Butler
"Mickey Mouse and I grew up together." - Ruthie Tompson, Disney animation checker and scene planner and one of the first women to become a member of the International Photographers Union in 1952.
x4
We went for a ride,
I hope things get better and better for D and for you! 
it's good you got them to tell you, though they should have just been straight with you and not made you worry and have to ask 