Sunday, March 24

[Othersharon]

Good morning! Finally the sun is shining again even though it’s still in the 20’s! So hopefully after yesterday being a no walk day we can get out today for one. The wind has been crazy, reports of lines and trees down all over the place. Coupled with the wet it’s been a mess. Beth, good luck with your surgery tomorrow. Bet you’ll be glad when that’s behind you and you can get moved to the other location. Velda, good that your son is doing better and has a target date to be released. We are definitely going to get out and have a nice walk today. With all the rain we’ve had and the wind I haven’t gotten out for walks the last couple of days. Still working on the treadmill situation with Buddy. We have several more days forecasted for rain in the 10 day forecast but temps supposed to start at least getting into the 50’s during the day. The snow went north of us but I think I’d rather deal with snow than rain! Or at least this cold rain. Not much else happening here. I just need to get some housework and laundry done today since I didn’t really do much yesterday. Hoping everyone has a good day today.

[JudyJB]

Windy here also. No chance of putting up awning in last few days, but today is the worst. A big sailboat moved from the hookup boat docks here to tie up in the river right opposite from me, and he has two heavy bow lines and a rear line attached to pilings that are about 20' out in the river. They are there for boats to tie up to when the locks are closed, as they are from 4:30 pm to 7:00 am each day. I saw a tugboat pushing a barge that tied up the other day on these heavy pilings.

Left arm is a bit sore from my COVID shot yesterday, but I was glad to get it. I have been in remission from CLL for four years, which is longer than a lot of people, so I am cognizant that one day, my blood numbers will change, and I will need treatment again. Over time, it is also likely my immune system will weaken, so need to make sure I keep up with screenings for other cancers and vaccines for diseases. Next time for treatment will be easier because I will almost certainly not be part of a research study, and thus will not have to follow their strict schedule as I did last time. I still want the same drug combination, however, since it worked so well for me--only side effect was lowered platelets and higher potential for bleeding, but i have mostly recovered from that. And I will have to get the monoclonal antibodies via infusion, but after that I can get the pills from a specialty pharmacy. Have no idea what that will be like, but Medicare will pay for most of the cost, and I can get money for the rest from various cancer organizations. And maybe I will be really lucky and go for another 4 years or so in remission!! No evidence on how long you can expect treatments to last until more years and more people under treatment.

[Bethers]

Judy I'm so glad you've had such success and hope it continues for you.

Sharon and Judy, it's really windy here also. I felt like it was going to blow me over walking Ty through the cg a couple times our last time out. I'm hoping to see it calming down some soon because I'd like to get Ty out for a better walk soon. I want to go to bed early since no food or liquids overnight.

I stopped at the managers site and told them I'll be leaving either Wed or Thursday depending on how I feel and the weather. I have everything on the RV and car ready to be connected to each other. It's all easy, but I'm not supposed to lift much or bed over, especially in the first days after the surgery, so want to follow the rules best I can. I will dump thanks and fill my water tank before leaving but that's easy. I'll be using the tt, so this will be ready for when I get on the road.

[OregonLuvr]

Good afternoon. Much better weather today, yesterday BIG winds and kept blowing things over on my deck so had to go out and put the plant pots it blew over upright, recover the chairs, sweep up the dirt from the pots. Chase a few things down. Today just a very light breeze. We have rain predicted off and on for the next week but looks promising for next weekend.

I have spent most of my afternoon in IRS hell. Decided today was the day I would do my income tax. Been putting it off as I sold some stocks this year and thought I would take it in the shorts. But luckily enough the stocks I sold were poor performers anyway so glad I sold them when the stock market was still down. Thought I would owe a bundle but I dont YIPPEE I had umpteen 1099B forms to fill out tho and a couple of 1099R forms. All those financial forms are the ones that always confuse me but think I did it right. I still owe Oregon even with the kicker but it would have been much more except for the $400 kicker. Getting a refund from Federal so will still be $1100 to the good. I was honestly shocked. I was prepared to pay much more. I always have to pay Oregon so wasn't surprised.

Making a pasta dish for dinner with some garlic Texas toast and then will just soothe my aching back from sitting so long at the table. Just feels good to get those damn taxes done. Think I will celebrate with a Baileys and coffee later.

[JudyJB]

The really hard thing with a chronic form of cancer, like mine is, is that you are always waiting to get sicker. I participate in a forum with very knowledgeable patients and a few caregivers. They are knowledgeable because most of them have been getting one treatment or another for a long time. One, for example, was diagnosed in 2008 when the life expectancy was only 4-7 years, on average. She was on watch and wait for a couple of years, but then had chemo, which was only mildly effective because she had an aggressive version of CLL, based on genetic tests of blood cells. She later had one of the first semi-effective treatments, and lived long enough to get the then newest targeted "pill" drugs in 2017. That eventually failed, and she has had two even newer targeted drugs since then. Doing OK for now.

I have a slightly more aggressive version than most patients, but taking advantage of the research study in 2018-9 that enabled me to get one of the newest drugs at the time had helped me. Except no one will know the long-term survival rates for any of these drugs until a lot of us die. My Oregon oncologist is a research physician and says he is confident that I will have a normal life expectancy, but there is still this thing hanging over my head all the time. The really, really good news is that this CLL forum is very quiet these days and almost no one posts about failing treatment or someone else dying. That means the several new drugs are working, but there are occasional scares when someone with the same CLL genetic ID as I do, and having taken my same drugs, is needing to switch treatments to a newer version.

The other good news is that there are a lot more targeted drugs being developed for tumor cancers like breast and lung, so things are getting overall better for all cancers. And even if I do have to get more treatment, it will be mostly pills, and I can handle that because I had almost no side effects last time. Did you know childhood leukemia once had only a 20% survival rate, and now has over an 80% survival rate??

[Acadianmom]

I went to my hospice lunch and finally had some good Mexican food. I remembered to ask for a cheese sauce instead of that yucky red sauce they are using now. There were about 30 people and it was very noisy. The lady next to me ordered a Margarita. On Sunday they only serve medium and large Margaritas. She ordered a medium and it was still big. When the bill came it was almost $18. I'm glad I didn't order one, it would have cost more than my food. When I was getting dressed I was looking for spring clothes. When I went outside it was cold and I had to find a jacket. When I got home I put the heat on. Air conditioning one day and heat the next.

Judy, I'm glad your treatments are working for you.

Karen, my IRS hell was yesterday. I agree, it feels good to get the taxes done. Because of the farm, last year my return was 17 pages long. No way am I going to attempt that.

I have to pre-register for my colonoscopy on the 2nd. Hopefully I can do it by phone. I'll call them before I bring my tax papers in case I have to go in.

The wind had gotten here, I can hear it. I went to let a cat in and the wind tried to take the storm door. We are suppose to get more rain tomorrow.

Martha