INSOMNIACS place to talk in the wee hours
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Hi Everyone! Sorry I've been MIA. Had a lot going on but was lurking.
Wedding ceremony was very laid back. DD's style and I must say I liked that. Wedding reception was the most fun I've ever had at one. Young crowd, good DJ, non-stop music (nothing slow other than DD and SIL's first dance and the father/daughter and mother/son dance). Hubby said he didn't recognize any of the music. I chuckled at that since he listens to talk radio and when I'm with him we play the oldie stations since as a compromise. He's not into current music. Bartender's commented it was one of the best ones they've worked. Pictures are in my iPad. Will post a couple of them later. DD decided two weeks before the reception that she wanted flowers for the tables (thank goodness she nixed the mini pumpkins idea). My job was to search for reasonably priced arrangements and send her links. Went with Telefora and their bulk order department. She can fall into a pile of manure and come up smelling like roses. Pulled that one off without a hitch.
After a busy two weeks with the wedding, went right into Christmas shopping mode. Needed to get gifts for son and family in Japan. That took me a couple of weeks shopping, wrapping and getting the boxes mailed off. They have arrived in time for Christmas! Yay I've missed a few times. Never send your husband with the packages to the post office when doing international mailing. One year, birthday gifts ended up going space available instead of first class. Ugh DS isn't happy when that happens but DDIL tells me not to worry. The children like getting the gifts regardless. Will even get DGS's and DGD's birthday gifts off in plenty of time.
Had a couple of health issues come up. Latest is I have Sjogren's syndrome. Need to make an appointment with a rheumatologist. Worst part is the dry eyes which makes it hard for me to read from the monitor.
Smaarty, I've been flat from the beginning. Caught a few stares but once people realize I'm looking back at them they look away. My mantra is, "It's all in the flatitude!" It's never bothered me and is quite liberating. Check out "I look for other flat chested women. A rant." https://community.breastcancer.org/forum/82/topics/789067?page=1
Lover, thank you for the b-day wishes. Very kind of you. You are such a sweet person. Always have the right thing to say. Have fun in Hawaii! How did DD1 do her first semester?
JunieB, can't wait for you to get Kirby! Boo on the delay but on the bright side he's getting closer to be house trained.
MammaRay, totally understood your needing to get away. I did that a couple of years ago. It was like a pilgrimage. The most refreshing thing I ever did for myself. Made up my mind and booked a flight and hotel for the next day.
Mommy, congrats on the A. Worked in an academic office at a university within walking distance from me. I so admired the older students and the younger ones with families. Not easy.
Shep, glad FoFF is doing so much better. You're a wonderful DIL.
Spookie and Chevy, so glad to see you back. I've missed you both.
Love the pictures of Evie and Elena!
WildT, the picture of you and your children with Santa and his Elf brought a smile to my face. Lovely family.
Happy Belated Birthday to those who have had them come and go.
Oh dear, I've gone on way too long and have missed so many of you in my post. Please forgive me.
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Susan, Sorry you're feeling so yucky, and with so much to do.
Hi Sensi!
Loverly, Have a great time on your trip!!
Mags, sorry you are in so much pain.
Smaarty, I had delayed reconstruction, so was flat for over a year and I didn't like it. (Some of the time I used a prosthesis, and some of the time I didn't.) I found it difficult to find clothing that I like and fit. Women's clothes are made for boobs. But, it's a very personal decision and I know some are happy with being flat. Will you share why you want to have your implants taken out? (You can say no..) My DD is about 4'7", I'm about 5'1" and my DS 5'5"-5'6", so yes, he has passed me up! DD has a short stature dx and will not grow anymore. Due to prematurity she had an abnormal puberty, so she's done growing. She didn't have genetics on her side either! I'm feeling pretty good from EX..one area is still pretty tender where the PS did the IMF. I'm a little concerned I did too much too soon that first week (hoping I didn't mess anything up inside), but there's nothing I can do to change that now.
Sleep well everyone.
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WildT, I don't mind. They are hurting more all the time and I've had enough. I have an appt to see PS on Thursday and see what she thinks. If theyre encapsulated then I'll have to seriously think if I want a redo. I like having boobs! Probably not. I was mostly flat for 5 months at the beginning. I had skin sparing bmx. The problem I'm having is whether or not she can clean me up enough to be flat. Because I had a breast lift 15 years ago there's an anchor incision that was very wrinkled and pruning looking until I got the TEs. I know I'm being vain but I don't want to have to look at my chest if she can't make it right. Dumb but don't want to hide either. I'm not worried about what anybody else sees.
I can also modify my clothes so that will make it easier too. I'm worried about that iron bra feeling that some get
Lover, have fun and don't get a sunburn.
And I think the cold weather makes all this worse.
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Popping in and feeling so behind on here! Between the holiday stuff, residual doctor appointments, prostetic appointments, needy new kitty and throw in a root canal which ended up infected. Only time to lurk and send Merry Christmas and holiday good wishes to all.
Mags - Hoping for some ease to your pain. Even flat on your back you made me laugh about people not noticing the missing triple d's, very true
Loverly - So beautiful! Happy holidays ahead for you, see you when you get back.
Hi Sensi - Are you getting some rest and not working too much? Hope Chance and the new pup are getting along well.
Smaarty - DH is about the same, thank you for asking. He is having surgery in January that should help a bit. Gus is great, keeping us laughing. Call him Gassy Gus because he had a tummy thing going on, hopefully the medicine helps. Really sorry the implants are still giving you grief. I am feeling fine with the whole no recon thing but I wear foobs when I'm out and about so I'm not a going flat girl really. My surgeon got me flat and tidy which is what I wanted but honestly I dont go around nekid often enough that the scars bother me. Something weird happened though, when I was trying on the new bra and prostetics I had the strangest little feeling of guilt that I looked so good. Very strange, I dont understand why I felt that way. Anyway, hope your PS has some good news for you. You made me laugh, scheduling surgery around sewing events, now that I understand!
Oncology appointment tomorrow to discuss my positive PALB2 genetic test result. And follow up info after the BMX. Cant find much info about the PALB2 gene so looking forward to seeing what my doc has to say.
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Thanks Kath.
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Lover have a great holiday!
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In case I don't get back here before the weekend, I want to wish you all a safe, happy, pain-free holiday
Stay warm and behave yourselves!
-jeni
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Smaarty, if you're on FaceBook, there are 2 Flat & Fabulous groups. Here's the link for those who are flat due to BC; the other is for those who have had preventive mx.
And because we always need a laugh, here's this.
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thanks mags, I'll check those out.
Poppy, I used to feel quilty too. And there's a thread here for that. I don't any more. This will be #5 sx for this, I think Ive paid my dues now. I know others have it much worse, so no complaining there. I wish there was some way to know what would work best for us. Maybe some day in the future. I used to have a cat, his name was Windy. That's should tell you what his problem was! You could always tell where he was.
You guys be good out there.
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MammaRay, We're thinking about a movie and dinner out. DD who just got married is taking her hubby out of town for the weekend and will be back on Monday. I'm doing the holiday dinner then. It was either this past weekend, too early to feel right, or Monday. I chose Monday and am feeling very relaxed about it. I was 61 when I had my BMX. It's felt right for me from the beginning.
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Yay! Kath is back! Lookie was here! Eeyore blew in! Jwoo stopped by! 🎈🎉🎈
Kath ~ I had to look up Sjogren's syndrome. Dang. Why is it so many of us have autoimmune disorders? Like BC isn't enough? Hoping there is an easy way to get rid of the dry eyes - that must be sooo uncomfortable. I know there are drops, but I wonder if a humidifier would help? Anything to add moisture..... The wedding sounds lovely! And no pumpkins - woo hoo!
Susan & Sensi ~ Sending gentle warm (((hugs))) to both of you. Slow down, rest and try to take it easy. Even an Iron Lady and a Go-Go Girl need a re-charge every so often 😴
Smaarty ~ So sorry you are having so much pain and discomfort. Hoping your doc can help you make the best decision for you. Cold does aggravate everything. I'm tempted to start tucking those little heat packets for cold hands under my clothing!
Loverly ~ Thinking of you and DDs and DH getting to spend Christmas in paradise. Pretty awesome! Have a fancy frozen cocktail with an umbrella in it for me 🍸
Feline ~ Still smiling thinking of your dad's magical Santa sighting 🎅
PeppyJean ~ Gassy Gus? Nooooo. Not that sweet little fuzzy wuzzy. I'm sure he is taking the blame for someone else. In your pocket for the MO tomorrow. Just 'cuz a genetic test might indicate something bad, it doesn't mean it will happen - my opinion. I had the cancer profile done last October.....I am zero risk to develop cancer! Tried to tell my MO I was not cancery but he didn't believe me 😜
M0mmy ~ What a nice early Christmas surprise - great grade and time off!
WildT ~ Are you on winter break with the kids too? I miss spending Christmas time with my kids when they were little. We'd go see light displays, visit Santa and stay up late snuggled with blankets watching movies on TV while pigging out on goodies.
MammaRay ~ After a lazy Christmas morning we would sometimes take the kids to see a movie after dinner. We also would play board games. How did your cookies come out? Yummm icing!
Mags & Spookie ~ Spine pain from mets/disc disease/arthritis/ect. big time suck. The challenge is to isolate what is causing the pain and then figure how to treat it. Is it nerve pain, bone pain, soft tissue/muscle pain? Rads, kyphoplasty, radiofrequency ablation, anti-inflammatories, Cymbalta, Neurontin, Tramadol, Robaxin, pain killers...... Usually a combination of stuff since more than one thing is causing the pain. All I can advise is to fight and be a pain in the arse to keep your docs working to find a solution.
Chevy ~ Hope you tossed your shovel out and are not feeling too sore. Have the squirrels come begging at the door yet? I/m going to Costco to get my ears tested again... I remember you saying they had good doctors and the best hearing aids. I had seen a ENT specialist the other week.....whatta dope! He told me that he had no knowledge of Tamoxifen or Femara causing hearing problems! His hearing aids were crazy expensive too.
JunieB ~ Hope you are safe n' warm at home. Do you have all your puppy proofing done yet? Next year you can take Kirby to have his picture made with Santa!
Good night to all and Good Morning to Feline!
Marti and I didn't go see Santa this year - this is from last year. Marti looooves Santa - my avatar is from 2007 when she was 4 - bigger pic below....
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SHEPPERS ! Same thing here..! My PC, Oncologist weren't any help! I researched it, and found LOTS of articles about hearing loss from certain ototoxic drugs ... like Tamoxifen... Chemo drugs cause hair loss...(So did Tamoxifen with me) And the insides of your ears have tiny hair follicles to help with transmitting waves.... When they are damaged, sometimes they just "lay-over" temporarily... But when they stay down, that is permanent hearing loss.
I took 5 pages of info to my Doctors'.... They didn't seem to even care. I sent the drug company samples of the pill I was taking... Never heard back.
YES it is possible, because certain women, born with a certain gene, are more susceptible to an "infarct" (stroke) near the 8th cranial nerve causing hearing loss.... Usually in older women. The SE's listed on Tamoxifen include, stroke, cataracts, and on & on.... But we never think of that! And not enough professionals are familiar with this happening!
There IS information, and I'll post some links.... And here on BC.ORG, a few of us were talking about it a few years ago!
But the bottom line is, most won't get their hearing back... I took Tamoxifen for about a year and a half... Then woke up one morning and my left ear could not hear... Then about a week later, my right ear. The PC thought it was maybe allergies... treated that for a month.... nothing helped bring my hearing back.
A month of nothing helping, my Husband said it HAS to be something you are taking! All I was taking was the Tamoxifen.... I stopped that.... Then my Oncologist wanted me to go on Femara... I just was so afraid, I quit it all.
So I am going today.... just have so much trouble with my old hearing aids... (5 1/2 years) The feedback in my left ear is driving me nuts... I know they can adjust SOMEthing to help.... Then I'll get NEW ones! They are about $2600... not the $5000 that any ENT would charge! I go back to Costco occasionally for "cleaning" etc. and new little plastic "pieces"... I have the BTE kind....
You can get CHEAPER ones, online.... but I have never tried them! My Brother tried a different type, but didn't like the "extra" noise, because being around a lot of people talking , is sometimes a PITA....
Your hearing will never be the same as before... but you will get used to the hearing aids........I'm posting this before I lose it, but I'll post links.
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http://www.webmd.com/breast-cancer/news/20041011/t...
http://www.dartmouth.edu/~dons/part_1/chapter_6.html
http://www.yourlawyer.com/topics/overview/tamoxife...
https://www.vanderbilthealth.com/billwilkerson/279...
http://www.webmd.com/breast-cancer/news/20041011/t...
Maybe some of these links will help answer your questions?
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For Spookie... Steel capped thongs....
And for me..... but I don't care....
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sheps...the Iron Lady has melted down. Now I am an iron lump. Not sure how this lump is going to make it through Christmas
. Mammaray, was in femera a long time. I didn't have hair loss, so don't know if it's a side effect. Got a lot of hair loss now.
Off to work.....pain meds aren't helping theses days
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I am so tired of having things blow up in my face over the slightest thing
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there are a few threads here about hair loss, what to try, etc. Most say biotin? is good. I tried it but was too impatient. Others say rogaine. My derma said you must use it for life. I was afraid the dogs would lick the sweat off my face and injest it so never tried that.
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Mags, your weird friend beatmon loved that joke
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Have a great day all
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Chevy - OMD.....I'm printing up some of those pages you posted. Excellent, excellent stuff! Wish I had read this all before going to that dum-dum ENT. My birthday "surprise" from FartFace was a visit for the free exam at Sam's Club last month. (few days after my October B-day) The exam was sooo thorough and the tech was very nice and knew sooo much! The tech had me try some hearing aides in the store.....I could HEAR and the buzzing/ringing/clicking in my ears was GONE! I thought going to the ENT would be the thing to do to double check. His test was all of 10 minutes! Sam's Club was almost an hour. I want to see what Costco will find and then I'll decide between them or Sam's. Costco offers a way better deal with free insurance for lost/broken hearing aids and lifetime servicing. I'll have to somehow come up with $ out of pocket and get reimbursed through my Insurance. If I were to go to Beltone, they would bill my insurance and I wouldn't have to worry about paying for anything. There are some Beltone offices near - don't know anything about them though. THANK YOU for the info!
Susan ~ (((Hugs))) When pain meds fail I break out the Valium or Ativan to ease the panic and distress of hurting so bad. I should be waaaaaaay happy all the time! Thhhhp to yucky things that make us feel bad
MammaRay ~ My hair was damaged from years of thyroid meds that I didn't need - misdiagnosed - and then thinned some on the Tamoxifen. Femara can thin hair too; hasn't wrecked mine so far. I started taking Peridin-C a few years ago for the darned Tamoxifen/Femara hot flashes. 2 tablets, 3 times a day. It helps nicely and gives a mega boost to your hair. My hair is thick again and grows like crazy. Plus, the mega doses of that particular form of vitamin C are supposed to block or slow down cancer. Amazon or eBay usually have the best prices.
M0mmy ~ Hope your day gets better. No more explosions!
Spookie ~ Gah! What we do and don't do because of our furbabies. I always worry about what they might lick off my skin too. With all the literal crap doggies eat, maybe we shouldn't be so worried? Said the girl who has been cooking venison and potatoes for her dog all week..............
Beatmon ~ Weird friends are the best! Especially weird friends bearing hair. Mags is so lucky to have you
......and yes, I "got" Mag's joke.....Just didn't know if I wanted it, ha!Edited to give a big (((WAVE))) to Sensi who just snuck in
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Oy, not so wacky with Loverly ditching us to have fun in the tropics..... So this week I say...
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No more explosions today. Everything is back to normal
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Glad to hear M0mmy. Sometimes killing them with love and kindness (even when you don't much feel that way) can help bring things back to a better equilibrium
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Yes.
In tears here at the moment. A dear friend from high school just honored people that he knows that are dealing with cancer, he included me in that group.
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Shep my daughter loved the happiness fairy and sent it to all her friends.
My Christmas wish is for all of you to have a pain free holiday.
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I think they should make winter start about 3 weeks ago!
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Prayers for everyone dealing w/pain, stress, hair loss (always distressing...), obtuse ENTs, and all the other crap that we have to deal w/when it comes to cancer. BIG FAT BOO!!!
I got my Pneumonia 13 immunization yesterday, and for some reason I simply COULD NOT SLEEP
. Finally got a couple of hours after the sun rose (from maybe 7am to 10 am). Thank God I don't have to go to work anymore, and kudos to all of you who still work while dealing w/the challenges we have. I'll have to get up early tomorrow to take our Sofia to the groomer....no one wants a stinky dog in the house with company at Christmas ;o).The diarrhea from the shot wasn't that bad (if you're getting the shot, be sure to look up the SEs on line). Geez, the drs and nurses don't tell you squat about this! All they say is, "Oh, your arm might be a little sore, and you might be a little sleepy..." Yeah, arm was a little sore when I tried to sleep on that side, so I slept on the other side. Sleepy? NOT!!! I have to get the Pneumonia 23 shot in a couple of months. Not looking forward to that. You have to get them when you are OFF cycle.
Tamoxifen and AI's....YEP, hearing loss can indeed happen. I swear, the MOs need to READ these posts, darnit! It's like we know way more than they do....so FRUSTRATING. Hair loss is also a big SE with some of the AI's, too. MO wants to switch me to one in February if my scans are good b/c she doesn't want to keep me on Xeloda for too long: cardio toxicity, etc. She says I can always switch back if the AI's aren't effective.
Well, got to pull myself out of the La-Z-Boy and go mail some more Christmas cards. More cookie baking tomorrow, and on Friday DH says he'll help w/getting the house a little tidier. OMG, it's a disaster area around here
.Hugs to all and Happy Solstice - the days will FINALLY start getting longer again...Yay!
Lita
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You guys, I went to Costco for that "extensive" hearing test! My hearing is just a little worse than it used to be.... Ordered new hearing aids....
Sheps...! I suppose Sam's club is about the same as Costco.... I just don't know... but I love they way you can go in if you ever have a question, or for cleaning the aids, and the batteries are a lot cheaper. I ordered Bernafon again.... just the newer up-graded kind.... "(Bernafon Juna Pico") I'm sure all hearing aids are about the same? I don't know, because I have never had any other.
I also ear-candle my ears.... have for years! I get a ton of soft wax out.... That has a lot to do with my lack of hearing, and the feed-back from my hearing aids. I order them from EarCandles.US.... the Paraffin ones... not the Beeswax, or the soy.... Only Paraffin.... They burn better. If you are interested, google how it's done.... The tech said my left ear had a lot.... I came home and used 4 candles....! I got so MUCH out! Probably about a Tablespoon ! I told the guy I would work on them when I got home... so I could get the test anyway!
I know ENT people just have a heart-attack when I talk ear-candles.... but I have had them flushed before, and it doesn't work. I use a mirror when I do a candle, to see how far it is burning down. I just know it works for me.
Sorry about the hair loss! I don't lose mine anymore.... or very little.... but any of those drugs MIGHT cause all kinds of problems!
Take good care everyone!
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Not much to do tomorrow so I think it will be an easy day for me
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