February 2024 Chit Chat and Check In

[Smilyn]

I'm so happy to hear that you are better Margie! That pill issue is so scary. Yay good test results... I hope they all stay that way!

Grassy... I'm emotionally unpredictable but ok today. I see the oncologist tomorrow. I'm looking forward to the Full Moon tomorrow; it's an important one with Venus and Mars meeting up too!

I love typing with short nails and the look of longer ones (though not square nor pointed. Matching the shape of the cuticle line (in reverse) is what I prefer for shape.) I can't use Nailtiques though. I gave mine and the color that I used with it away back when my nailbeds began to burn after a couple of weeks using it/them. I have gone back to a product with less ingredients when I wear polish. I have a cream now that I try to remember to use to strengthen my nails, but my nail issues are hereditary. All of my current nail issues match what mom had. I'm currently investigating press on nails and natural nail dyes, like Henna.

Hope everyone else is OK. Huronna... Looking at you

[Flagryl]

That mixup w/meds is scary, so glad it's straightened out and you are on the right track Margie. Let us know how the appt w/oncologist goes Milyn. Sending you loving/healing vibes. Yea full moon. I need to call my cousin.

This sounds boring, but I am finally reorganizing and streamlining my lateral file system. John started using the hanging files over 20 years ago but I had lots of colored folders and was too cheap to change. Well. Hanging files fit better. I am also getting rid of all the folders from accounts that have gone digital. I've filled the recycling basket in my office twice. I'm paying the price for not throwing stuff out, but am rectifying the situation.

I'm still using Nailtiques and loving it. I keep my nails about 3/8 beyond my fingers. I really have to keep the thumb nails short because I tend to jam them and then the nail breaks below the quick. Then I have go to my nail tech and she applies some acrylic to hold it until it grows out. Pain in the....

[Huronna]

I feel like a nailtique spokesperson.
Right now mine are pretty short, they were perfect length when I left for the cruise, but then on one of Joe's mishaps one banged into something. I knew it was cracked, But because I have so many layers of polish and nautique I let it bee for about a week. The I just got out the clippers and cut them all down quite sort. They will grow.
Took Joe to his Psych appt yesterday. As soon as we got to the valet parking I got a wheel chair. and used that for safety.ALl went well and the psyche is getting the system rolling with Social worker getting into see his primary much quicker.
Out friends are leaving today as His brother in Ohio is in bad shape (alcoholic) and he wants to help to see if he can get him in rehab. I will miss them, but understand whythay are going to leave sooner than expected. I was just totally thankful for their being here when we got back.
Joe has another appt. Today, SO I'll be off and running again

[margie52501]

Thanks for all the kind words and prayers. Prayers for your husband Huronna.

[silk]

Margie...it's scary when the meds are not right. I am very glad it's sorted out for you.The doctor at the hospital told me that I'd been prescribed the wrong BP meds and it's caused damage to my heart and helped my kidneys to fail. As if I didn't have enough going on. I am trying a new GP this week. Thanks to the government.. GPs are leaving in droves here.

[Flagryl]

Oh My Goodness, that is awful. I think some heads should roll in Iowa and Australia.

[Huronna]

I'm sorry this has happened to both of you.There was a time when they made a change in my scripts, and I didn't agree with them, I refused to do what they wanted. But not everyone has the experience r knowledge of what certain drugs can do. And there have been time when I told my PA, that i needed something changed, I have done the same with Joe's Docs. I have been lucky that they have listened

[silk]

Huronna, I believe you have more knowledge than some of us. I hope Joe is beginning to feel better and that you are rested.

[Huronna]

He has a appointment Monday at 6 am for a CT scan because of all the fall he has i the past month….20 and they are also scheduling physical therapy inthe home . We have a lot of work to do to get him back where we can vacation anywhere. Again.
Our friends. Left this morning, my brother arrives. Wed for three days….nite now

[Smilyn]

Flagryl, that isn't boring to me at all. I would love to say I have been doing that - and I need to. Darn ADHD won't let my mind keep to the task. I'll be trying again soon though. I lost my medicare card and went through a panic not being able to find the original folder of Medicare data that has the full number not part blacked out. Made me realize once again how overstuffed my files are.

I'm sorry to hear about the meds and the damage Silk; especially those two things. Poor you! I hope the new GP is attentive to you and to detail. Personally; I fear that kind of thing a lot as my body reacts very oddly to many meds and substances - as did Mom's. (Hur; that may be why nail products are painful after a few uses.) I fought with docs about her meds a lot and we managed until the pandemic when I could not see what they were (or were not) giving her. Sigh. I am currently doing that in reverse as the things that have painstakingly been found to work for me have had to be halted for this oncology journey. I was really angry about that.

Today I saw the oncologist. He started by saying: "Why don't you tell me what you know about your diagnoses." I talked for 10 straight minutes about the percentages of DCIS that are inactive, the reason this can't bee depended on being stable, the survival rate and recurrence rate comparisons between inactive and invasive and why that is problematic, the 2023 international conference where renaming DCIS out of the Cancer family and lowering the aggressiveness of treatment was discussed, why and why nothing has yet happend on that, the various surgical treatment options with plusses and minuses - including chemo, radiation, and the cases where hormone blockers are appropriate, and the importance of the change (with specifics) that was noticed in the 6 month call back ending with my diagnoses. I finished by telling him that I hated having my hormone therapy removed and was more frightened of that than the DCIS (and I am.) I then asked him to fill me in on the things he knew about my diagnoses that I didn't. He literally said: "Well, you've done a lot of research! You've covered almost everything very accurately. I want to correct one thing about med duration post surgery and add some data about the benefit of an MRI and possible genetic testing, and that's about it. I'll see you after you meet with the surgeon if oncology procedures are part of your treatment plan post surgery. We chatted about some other stuff, he gave me an exam, and that was that. Monday I will see if the surgeons schedule has opened up at all. I'm a month out from the first appt with her. I was very emotional for the last two days, but I'm doing better now. One of the things I did to counter that was read everything I could find online and in the folders I was given. It pleased me that I understood it, retained it, and was able to repeat it clearly. Somehow that gave me confidence I had been lacking.

Huronna; I'm glad you are home and getting back into routines - especially with Joe's med appts. Next; the gym, right? I hope your friend's brother gets into rehab ok.

I have not been sleeping well and I'm tired. I will say goodnight and leave a wave and a hug!

[Grassy]

Hello everyone!

Not much is happening here.
A friend got me to try sushi. Totally life changing. I love it! So I tried some more and I love it even more! I love the California sushi the best. Yum Yum Yum! And I tried avocado toast. Yum City! So delicious! I am a big texture eater, so these new things are amazing to my tongue.

Margie, that is so scary about your meds. Silk, you too. I am glad they figured it all out, but yikes!

Huronna, love to you and Joe.

Milyn, it sounds like you've got it going on with your research and advocacy. Good for you! Knowledge is power. And confidence in your team is even greater.

Nothing much is happening around here. I discovered coloring as a way to relax. I enjoy it a super lot and that is what I have been doing. And watching women's college basketball.

I've got to make some tags for The Zone but my Mojo is on vacation. It's weird that I can color, but when it comes to making taggies, my Mojo is nowhere to be found. Go figure.

[Huronna]

Milyn, funny you should mention gym, I was thinking about it, but still haste unpack Joes suitcase and put everything away. Needed to do my pills as I only has two days left, wanted to play a little in PSP, had to do my nails (that makes me almost backto normal) then the day just went by…..tomorrow, I must get back

[Grassy]

How are you Huronna? Getting your routine back slowly?

[Huronna]

Slowly with a lot of exhaustion, and more to come. Joe has a CT appt on Monday at 6 am. Another appt on Tues at 9:30 and then my brother and wife are due that afternoon, I think they have decided to stay in a hotel, rather then with us. Not sure yet.

[margie52501]

Sorry you're tired Huronna. Thinking of you both right now. Take care of yourself please. Sorry about your mix up with your medicine Silk. Hope everything goes well with your new GA. Not sure if I will stay with the doctor I have now or look for a new one. Haven't make up my mind yet.

[panthera66]

Hi all, just popping in to say hello, been a few days.
Still have this cough and sore throat, but feel ok other than that, My Dr has said it is the 100 day cough whatever that means, i hope its not 100 days!!
Celebrated some birthdays the last few weeks with my son in law and oldest grand daughter, booked a few coach day trips, off to Scotland in March for 7 days break via coach which i so need.

Anyway hope everyone is doing ok and enjoys their week.

[Flagryl]

Tilly, I hope this thing you have doesn't turn into a secondary infection. I'm fairly sensitive and that happens to me if a cold lingers. My body usually gives me signals and my docs can intervene. John can't tell until something more dramatic changes. I have to watch him. We are fortunate to have a really good internal med doc who replaced our former doc who retired a few years ago at a fairly young age. Her husband was our dermatologist. They are enjoying life, skiing and traveling. Good for them. My endocrinologist was an internal med doc at the hospital before he went back for his advanced specialty. Huronna, I hope Joe's CT goes well. Good to have it checked.

Grassy, we have some decent sushi places here, I love sushi. Not so big on the Calif roll, but love to try all others.

Milyn, when is your surgery? Thinking of you!

I have a Pedi today, need to get my treadmill work done before hand...off to do some laundry!

[Smilyn]

Tilly... I visited Google about this. If you have the 100 day cough then this information applies. But even though your Dr says it is, it's possible you don't or won't have the complete run of symptoms. The best thing you can do is rest and take extra special care of yourself at this time, just in case. Hugs!

"The cough is caused by the 'pertussis' bacteria. An infected person will have repeated coughing that can last for three months or more, which is why it is being described as the 100 day cough. Cough infections have risen across the UK in the first four weeks of 2024.Feb 6, 2024"

and:

"The term "100-day cough" typically refers to pertussis, which is commonly known as whooping cough. Pertussis is a highly contagious bacterial infection of the respiratory system caused by Bordetella pertussis bacteria.Feb 6, 2024"

[Smilyn]

Huronna, a tag and your nails sounds like you are in the right direction. I worry about you with all you have to do for Joe, after all you have been through - so was glad to hear the gym isn't on the list yet. I'm hoping things settle down in your house very soon and the CT gives results that are helpful.

Flagryl; I don't know. Nor even what the surgery will be. Waiting for availability for the excellent Oncology surgeon and her advice to finalize that decision; hopefully soon. Currently the bigger issue is the return of all the dreaded symptoms my Bioidentical Hormone replacement Therapy (BHRT) has been holding at bay for over a decade. BHRT was halted nearly two weeks ago on the orders of the oncologist, and it's a return to the "instant menopause on steroids" I suffered in 2004 after my ovaries were removed; nothing like normal menopause at all. Gradually, with the help of a couple of dedicated providers (and a "Top Doc" expert consultation, ) the right combination of hormones to reduce symptoms to a manageable level was tailored, and I have been on them since. Stopping them all at once is a torture that will increase for months as they leave my system. But perhaps becasue of Long Haul recovery I am feeling changes quickly, and I'm afraid of those changes: inability to sleep, joint pain, cognitive loss, stuttering, balance issues, weight gain, and unstable emotions are part of rapid hormonal loss, and extreme fatigue very reminiscent of Long Haul. All very unhelpful facing disfiguring surgery with a feeling of relentless loss. And I know I should be grateful and optimistic and many are worse, etc etc... But the best comparison I can give is post partum depression; you can't just tell it to go away. Anyway; thank you for asking. I will post when I know more about a date. Stay well and enjoy your busy day. What color is the pedi?

Grassy: I have several coloring books. I love the black and white images so much I hate to color them. Maybe I will print some so I can change the way I color them. Maybe that will help. I'm always miserly with crafting materials. I wonder if it is because we were so poor. It was a big deal to use a resource that would cost money in our house; like crayons, or the rare bit of glitter. Coloring might help though. I'll try.

[Huronna]

Milyn, I must have missed something. You have whooping cough? Isn't that one of the bugs vaccination against when young DPT? DTaP vaccine can prevent diphtheria, tetanus, and pertussis. I can remember getting boosters a couple of times, I think I remember hearing about an uprise in Pertussis a couple of years ago.
Please clue me in on what's going on.

[Flagryl]

Huronna, Milyn was referring to Tilly's cough and sore throat, the 100 day thing to which Tilly's doc referred. I've had the DTaP booster as well.

So Milyn, you saw the oncologist first and you are waiting to see the surgeon to finalize matters. Yes, please keep up posted.

[Smilyn]

Thank you Flagryl. The pertussis based whooping cough resp infection is a serious problem in other countries atm, and is on the rise in the US. I had whooping cough as a college student. Not fun. I don't know what I had as a vaccine for that as a child - or if I had an an adult booster for that matter. I will be checking. I will also be masking again and using my hand sanitizer as I can't risk getting sick in that way when facing surgery.

Yes; I saw the oncologist first. It seemed odd to me, but that is how they did it. I will see him again two weeks after surgery - whenever/whatever that is. I will post when I know more.

[Huronna]

Thanks for the explanation, my head is still swimming with a bunch of things.

[Grassy]

Are you OK huronna?

I will be back later tomorrow to catch up. I had an EHD issue today. Tomorrow I see my oncologist to see how I am doing 7 years out from radiation and chemo. Can you guys believe that? It took a long time, but I feel great now. Milyn, I swear on everything that I love better days are coming. Sending love.

Sending love to everyone.

[Huronna]

I'm doing much better Grassy, things are moving along with Joe.He starts Physical Therapy at home today, that's something he really needs.
Results of his CT scan were completed yesterday AM and his PC called at 10:30 in the am to go over the results. He's being referred to a neurologist as there is some extra fluid in one of the ventricles. And this may be causing a lot of his problems, but more testing is needed.
My brother and SIL are coming this afternoon, they are not staying with us but in a hotel. Then they will spend tomorrow with us and on Thursday fly back to Oregon. They do this Fla visit friends once every couple of years, EVen before there was any problem with Joe they weren't going to stay her, because we already had Jackie and Rick here. DUH didn't make any difference to any of us, but my brother is a bit strange. In fact you would never know he was my brother if you met him, our personalities are so very very different. He's a bit staunch and straight-laced. Where I welcome everyone and hug the world. I still remember when Ms Kel PM's me and asked if I really meant that people could stay with us if they were in the area. Sure, of course. And she flew from Scotland to Tampa for her first visit to the US. What an amazing visit that was.