It's lengthy (no surprise there, eh? ), so grab a beverage.
Cut to the chase: Tomorrow Jim is having an infusion of Opdivo, an immunotherapy drug. (I forgot to mention in my update thread that he had to fail two Chemo rounds to qualify for this drug. This makes NO SENSE!)
Thank you again for your continuing encouragement and kindness.
Prayers for all of you every day from us ~
Love & Light,
Rose
Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.
Rose, I hope that the drug will be the right thing. I agree that's it's shameful that he had to go through the chemo just to get on the drug.
You have truly been living on adrenalin, for it's the only way you could get through it all if you ask me. It's astonishing how our bodies can adapt to just about anything. I hope that you're able to treat yourself to a few moments of peace and rest at least at times during each day.
SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.
You have truly been living on adrenalin, for it's the only way you could get through it all if you ask me. It's astonishing how our bodies can adapt to just about anything. I hope that you're able to treat yourself to a few moments of peace and rest at least at times during each day.
Good advice. I'm not going through anything, but I've started having a "quiet time" each day. Not sleeping, but on the bed, eyes closed, and doing nothing. It helps rejuvenate me.
I bought some poster board so I can block out any light coming in over the AC. I can turn the lamp and TV off, and it's completely dark in here. Makes it easy to nap if I need to. If not, it's a good environment to just lie on the bed, and rest.
"Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."
I'm so sorry you have to go through all of that, Rose. As Jimmy Carter once said, "Life is not fair". I hope the new drug works for your husband, if only for awhile. But take care of yourself, too. You won't be any good to either of them if YOU get sick! Hugs to you and your family...
...I am not a doctor nor medical professional, and don't pretend to be one, here... :o
I am so deeply sorry Rose that things are not better. Reading your update, I just wondered at your physical strength. I think sometime we are at our best when we are so focused on someone else that we are unable to focus on ourselves. However, you are going to have to have some rest time at some point. When you do just remember you are doing it to keep going for Jon and Jim.
Another weekend is upon us. I've been up since before 5, but I napped so much yesterday. So at 7, I ran to the bank and store, and didn't make a list. I got back out to the car, and remembered cat litter was the main thing I went to the store for. I went back in and got two 14lb jugs, and came back home.
I'm in the process of completely changing the litter boxes. I have always just cleaned them and add a little more of the clumping litter. It looks like sand, and clumps great.
But Seven has now pooped RIGHT in front of two litter boxes. Well, I don't speak cat very well, but THAT message came through loud and clear. I've got one box done, taking a coffee break, then get the other two.
One reason I ran to the store so early is my new coffee maker is due today, so now I WILL be here when it comes. They (Amazon) may have sent it by mail, but I will get a message if delivered to the mailbox. That's one reason I like shopping with them.
Well, it's back to the litter boxes time. Have a great day everyone!
"Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."
I liked the clumping cat litter because the litter didn't need to be completely changed so often but every 3-4 weeks I did change it completely. That's an added expense but far better than having an unhappy cat.
Seven is better now, I hope?
SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.
I'll see if Seven has a smile on her face. If she's happy, I'm happy.
I'm having my first cup of coffee made by my new coffee maker. It was really packed well. But it's like Seven, if it's happy, I'm happy. I've already had 2 mugs from the other coffee maker today, so if I crawl out of my skin, help me get it back on.
And a Japanese monster movie is on TV. Somebody is livin' large!!!
Maybe by late tonight, after a few frosty ones, I MAY be able to...I hope. I just did a lights off/rest my eyes after a meal, so if I can't sleep later, so be it. Late night TV is really better than prime-time anyway.
"Given the millions of billions of Earth-like planets, life elsewhere in the Universe without a doubt, does exist."
I keep trying to write my post, but things are working against me. It's not even 9:30 p.m. and my body isn't happy. I have a rogue nerve issue in my left arm. Pain at the elbow and tingling in the palm. It's just weird. Maybe it's time to take some CBD oil and go to bed now.
s
Jendie
I've been a member of this forum during its different incarnations since I was dx in 9/98
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