INSOMNIACS place to talk in the wee hours

Anonymous

Beautiful song, beautiful message.........sooo wish it could be.......

JunieB

Hello Ladies!

After much, much PIA confusion/miscommunication I made it to the SNF. Same one I was at in 2013.

Despite the first case manager saying what she did in regards to how far I'd walked, they finally came to their senses once they took into consideration my co-morbidities and weakness on my left side from my hip reconstruction for the chondrsarcoma, living alone, etc.

Also, in mid-afternoon Monday, the infectious disease doctors said I would be on the Cipro. Then at 5:00 p.m. I was told that I wouldn't be using the Cipro.

Their thoughts were that since the bacteria only grew on one of the 7 specimens, and I have no evidence of an active infection, they determined that taking a wait and see approach would be best at this time. I am glad not to have to take an antibiotic I don't absolutely need. Especially because of the SE' s of tendon problems, etc. As well as the overuse of antibiotics today and drug resistant bugs.

Now on the brighter side! I checked Facebook this evening and found a "friend request" from my half-sister. Yeah!

Smaarty - Very cute pic of Evil & chicks.

Shep - Thanks for the cyber-hug & the precious pics of the little Cairn. Do you know the owner of that gorgeous baby or are they pics you've found on-line?

Feline - Thanks for the encouragement.

Loverly - Ouch! The dentist is never fun and even less so when you get the bill. Hope you're feeling better.

Sas - Do not berate yourself. All of your advice is a blessing, but you aren't supposed to carry so much responsibility for us every minute of they day. During all the confusion at the hospital, I stayed particularly calm, because I am of firm belief that God IS in total control and he does take care of us every second of every day. As you can see all has worked out well and I'm working on headed home from here. Yeah!

Thanks for your concern.

When I got to the SNF yesterday, I got to speak to a young woman who was one of the CNA' s here when I was here before. It had been nearly 3 years since we'd last spoken. Well come to find out, in the last 1.5 years she had been dx with Triple Negative BC. She is 28 years old and has a 3.5 year old son, plus miscarried a pregnancy just before she started chemo. So majorly SUCKS! I told her about these threads, but she's part of a Facebook site for woman with her dx.

Guess that's all for now. Will check back again soon.

Anonymous

Sensi ~ Hoping all went well with your MO appointment. Not knowing what to expect is stressful. Sending "happy thoughts" your way. Will Chance have your roommate for company when you go back to work? Maybe you could call him and "talk" to him when the answering machine picks up? I actually know people who have done that! Even worse, I worked with a girl who had a herd of house kitties. Her friend would call and taunt the cats when when she knew she wasn't home. Those cats would be bouncing off the walls by the time she got back!

Loverly ~ Ouch! I hope the rubber thingie wasn't stuck to the inside of your cheek, or your lips or gums....that would have hurt ! I think I would have been having a full on panic attack. Hope you mouth isn't sore

Wenchie ~ Mowing 3 acres? You're riding a lawn tractor, right? That's a whole lotta lawn!

Sas ~ I was starting to write something reassuring about our JunieB and she just popped in as I was typing! Yay! I had a follow-up with my PCP yesterday. He's the one who ordered the Genelex testing. He was so excited that my new Neuro/Spine team is using the results. I had printed some of your info about Dr. Retsky and Dr. Forget and the Toradol studies. He was very interested and asked to keep the printout. I'm still waiting on my surgery date and was glad I could talk to my PCP about anesthesia options. I also mentioned the beta-blockers. Doc took notes and is doing some research. Most doctors do not like when the patient does too much research on their own. PCP was delighted that I was learning so much. He loved the idea of these boards bringing so many people together to share ideas and educate each other. Doc strongly feels that knowledge is power, helps to lessen fear and gives the patient more control over treatment decisions. I am so blessed to have him.

Susan ~ Hoping your treatment week is going well. How is DH? Any test results? Fingers crossed that he is an "easy fix" or needs no fixing at all.

sensitivehrt

Shep-Meeting with MO was just ok.  Trying to process it all right now.  She is recommending 10 years of Tamoxifen, and said I would not be considered a TN.  Without Tamoxifen I have a 10-15% chance of reoccurrence.  With it drops to 5-7%.  I guess I went in blindly and really didn't expect what she recommended.  I'm still trying to do some research and questioned her about the Tamoxifen, because I have read with my NF, it might actually be resistant. I really don't want to take a med, that may not even make a difference. She said she had not heard the information on the NF, and would look into it.  I'm also having a harder time with the 10 years, since my ER+ is only 8%.  She says the current guidelines are even if you are 1%, you are considered ER+.  While I know I should be thankful that I can take the medication, it's had me more tearful than my BMX (maybe it's just the next step of it all).  She also stated that my tumor does qualify to be checked thru the Oncotype test.  But she will only send it if I'm open to the idea of chemo.

Has anyone had the Oncotype test done, and then have their ER/PR score change?  I have a friend on FB who also has NF.  She stated after reading my post that she had heard NF breast cancer is resistant to Tamoxifen and that when she had the Oncotype run, her ER+ changed.

Any thoughts would greatly be appreciated. 

Happy Hump Day everyone.

Anonymous

JunieB! You're here! Great news that you are at SNF. ~ no worries about cleaning, shopping or cooking! Hoping your pain is low and your comfort is high Exciting news that you heard back from your half-sister! How much younger is she? Is she married or have children? You might be an auntie! You've won the hearts of all of us here, I'm sure she is going to love you

The puppy pics I found online. Those Cairns are such cute babies! Here's another one....

And here's Toto in 1938 with Shirley Temple in "Bright Eyes"

Sweet Dreams!

Anonymous

Sensi - ((hugs)) You've just been through major surgery and now are having to make treatment decisions. More ((hugs)) Being ER+ an estrogen blocker is imperative. If the Tamoxifen doesn't work there are other meds to try. It is worrisome that your MO is not familiar with NF; at least she is going to research it. ER/PR status can change at anytime. I was initially ER+ 93% and PR+ 81%. Two years later I had a "new" lymph node biopsied and it showed I was ER+ 94% and PR- 0%.. I had been on Tamoxifen for the first 2 years. After the new cancerous lymph node popped up I was switched to Femara. I didn't know about the PR status changing until I read in the lab report. My MO never mentioned it - I don't know if it meant anything or not.

I call BS on your MO toying with you about the Oncotype test. She works for you! Tell her you can't make a decision about chemo without being tested and that she needs to get it done! Telling you she'll only do the test "if" is wrong. I hope you can stick some chewed up gum on her chair or somethin' next time you see her.

You'll get better advice from the others. Don't forget the chewing gum though

Sending you thoughts of healing and comfort .........

feelingfeline

JazzyJune Thank God sense prevailed. Hope you get a good rest and recovery time there.

Sensi sorry cannot answer your questions but wishing you well as you gather information and make choices.

M0mmyof3

Week has been going okay here but pretty busy. Sunday hubby and I celebrated our 12th wedding anniversary. Monday his cast came off and he was given a removable brace to wear. Yesterday, he started PT for the wrist. On top of this I froze 10 pounds of strawberries.

Jazzygirl

Sensitive- I had the oncotype score done with my surgery in 2012. That is usually a one time deal though, not sure why it was retested unless the lab notified of an issue after the fact? I do know they keep tumors in a bank for 10 years in case they need to go back and do more tests on them. My MO told me that last visit.

WenchLori

Shepkitty, I do mow with a riding mower. When I took over the mowing chore from my DH I asked for a bigger mower and he got me one. He thought he'd come out ahead that way. Besides I love to mow, I guess that's because most of my days I spend "running" around in circles, with mowing I can clear my head and "ride"around in circles. It's much safer that way. My big mower (Brute) is in the shop, so I used my smaller one (Lil Red) and it has one of the belt guards missing. Soooo, I spent way to much time putting the belt back on so I could keep mowing. Once Brute is home Lil Red goes in the shop!

Anonymous

M0mmy has TEN pounds of Strawberries!!!!!! Ladies, we must immediately embark on a road-trip!

I make an AWETASTIC strawberry pina colada..... There was a Polynesian restaurant/bar my friends and I frequented. I devoted many, many hours of my youth studying just exactly how the bartender prepared this exquisite beverage. Who knows how many hundreds of dollars were spent, trying to dissect the ingredients. Took me twenty years to figure it out. I asked the bartender!

Strawberry fruit dip, strawberry cheesecake, strawberry shortcake.................yum!

Wenchie ~ you're so cool! So full of surprises, you talented gal

It's so quiet in here...............

Anonymous

Loveroflife

Working.

WenchLori

sensitivehrt

Ha Lover- We'll get along great . see you at lunch tomorrow

Anonymous

Has anyone heard from Patty? I don't "know" her but do keep her in my nightly prayers. She is such an inspiration with her sweet personality and warm heart. Hoping all is well with her and that she is just taking a break from the boards........

JunieB

Look I leave you girls to your own devices and come back a few hours later to find you embroiled in all kinds of mischief.

Shep - the 2 newest pics of Cairns are too fabulous.

Had O.T. & P.T. today. Hip is SORE! and I'm really struggling with fatigue, and S.O.B. from the fatigue.

Wenchie - Yeah for you! Riding your big zoom zoom mower. Sounds like fun.

Loverly, Sensi & Smaarty - Have a great time at lunch tomorrow. Wish I could join.

Although Sacramento is only a 6 hour drive from here. Maybe someday in the future.

Hey there Feline. How are you doing?

Sas - What are you up to?

MOMMY - So what's the plan for the strawberries? Shortcake, Jam, Beverages?

Check back later.

queenmomcat

i know you all aren't talking to me about the strawberries, but I put in a bid for simply eating them, frozen, like candy. I discovered, last year, that my husband LOVES LOVES LOVES home-frozen strawberries.

Not the store bought frozen ones, not even the incredibly high end ones from Le Snoot stores in Chicago. The 'factory seconds' eat 'em now once I get from the local farm stands, and freeze right away.

Wren44

We went to a music festival in Kerrville Tx, which is peach growing country. The farm stands freeze the peaches that will be too ripe to sell the next day. At the fair, they sold frozen peaches topped with whipped cream. The weather was in the mid 90's and nothing could have tasted better than those frozen peaches.

A chef from Seattle went to Paris with her daughter, who was modeling. She said she bought 2 peaches from a fruit store. They wanted to know if they were for tonight or in the morning. Now that's getting perfectly ripe fruit!

Lookforward

• we were away a few days and just got back, one of the places we visited was the the Royal Tyrrell Museum of Palaeontology, here is a selfie of me. This is a world class museum for dinosaurs enthusiast

Lookforward

Shep we had one of these slither in front of us when we were on a coal mine tour, I thought at first it was a rattlesnake, but was told by our tour guide it was a bull snake. It was over 4ft. This isn't the actual snake.

Lookforward

picture of hoodoos

Lookforward

Junie good to see you are at SNF and getting the care you need. It is also nice your sister made contact with you.

I hope the ladies have an enjoyable lunch, as well as a good time tomorrow.

I did have one ripe strawberry from my garden today and would like to have a yard large enough to ride on a mower like wrenchie.

M0mmyof3

The plan for the strawberries is to use them for topping ice cream, milkshakes or whatever when the mood strikes.

sas-schatzi

Hi, Been here a bit of time this morning. My favs were lit up like a Christmas tree. Most were my housekeeping threads. Here now.

Junie so happy, you are at the SNF. Please, do everyone a favor that goes through that hospital, write a letter to the Director of Social Services. Copy it to the CEO and Nursing VP. Identify all the confusion and resolution. You have a way with words. In general, nursing is partly to blame for the confusion too. Had nursing and the SW had a conference you would have had no confusion, b/c the nurse would have said "Wait a minute have you considered this etc.". It may have well played out that way, but it should NOT have been last minute.

Do you remember my suggestions about asking for orders etc. way back when. If you find that post again, you will see that it follows in the sense of trying to avoid exactly what happened.

On a surgical floor, this should not have been missed. It's what they do everyday. Hips and knees are rare not to go to a SNF when co-morbities are at play. Especially if the patient lives alone. Good Luck ))))))

sas-schatzi

On the bacteria thing. I did a thread last summer. https://community.breastcancer.org/forum/73/topics/832722?page=1

The thread was on a weight hypothesis, but primarily I got into reading about the Microbiome. The bugs that live on us and in us.

The study took off around 2000. It's exploding with research.in the last ten years. What science thought they knew about bacteria, fungus, mycobacteriums is setting the science world upside down. It's as if they are identifying a whole knew area of study. NIH has just completed a whole knew building and division within NIH

Yes, we have bacteria within our tissues. This was a major discovery.

In regard to BC a bacteria called S.yanoukiae was discovered in breast tissue. The fascinating thing is--------in the vicinity of the tumor S.yanoukiae was depleted. In tissues further away from the tumor was found to be in usual numbers. The hypothesis is that perhaps S.yanoukiae is protective against tumor cells and was eventually killed off by something from the tumor. Research is ongoing.

Many studies in the last 6 years of different parts of the Biome.

Junie, it was a good deduction to not treat, but you must be vigilant. Your eyes are the common denominator. Every time they change your dressing you look at the incision and the area. Incision should be without redness. Each day evidence of swelling will be decreased. There should be only minimal drainage after surgery. Shouldn't be any from about the 3rd day on. The area should not be warmer than the other skin. Temp shouldn't be elevated. Low grade temps should be handled by increasing fluids(dehydration), Cough/ deep breathing/ Insentive Sprirometer( lungs not expanding well). Urinating without frequency, burning, or pain. PLUS, the site being watched. Any spike over 100 should be investigated.

Off on a mission

Anonymous

Smaarty, Sensi & Loverly ~ Have fun

Loveroflife

Thank you, ShepK. Will be thinking about you ladies. Wishing you all could join us.

JunieB, I was looking at the map for the distance between Salem and Sac. Doable, but I need a buddy to keep me company. Maybe I will run away temporarily one of these days.

Anonymous

Don't forget to save room for dessert!

Anonymous

Wren and Queenie ~ Fresh frozen strawberries and peaches sound divine! I've had great success with my blueberries but none with strawberries or peaches. Too many sneaky wild critters!

This is my secret cheesecake dip recipe........shhhh! So yummy with any fruit. For parties, I buy the little shot glass size of Solo cups and fill 'em up with dip topped with fruit. Easy to serve and thwarts those nasty double dippers!