INSOMNIACS place to talk in the wee hours
Comments
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3rd timer,
Tell us something about yourself. Married ? Kids ? Grands ? Hobbies ?
Are you still getting radiation or is that done?
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Hey peeps thanks...no Cammie they didn't but since I took myself off of chemo I am assuming it is the cancer in the lungs. thanks for asking...
Nettie whine all you want...I get it, so sorry, what pain meds are you taking..
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Hi Holeinone, I have been married for 42 years, we have two children a daughter and son, both are married with two children each. We are very fortunate, they live nearby and are the light of our lives. My husband is semi retired, he runs a small company from home. I retired 7 years ago, to help our daughter with her special needs son. We just celebrated his 7th. birthday today and he is doing great. We also are caregivers for our mom's 91 and 99 who live near by in elder care facilities. Thanks for asking.
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Wow 333 u have u'r hands full all the time--u must be a very patient and caring soul.
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Blondie, did I read it correctly, you just went off chemo (today)?
3TN, you have a busy full life, lucky everyone is close by. I feel busy like the sandwich generation between kids and family, you have another generation too. Take it easy, friend.
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Chevs- love the statues your neighbor gave you. YOur garden looks great! You are so nice to help her through everything, and I am glad that she will be taken care of. Plywood floors can look really good- after you clean them up, if you still want to see wood, a couple of good coats of poly can make them look great, esp if you add stain.
PattyP- I hope your pain is lessening.
Enerva- beautiful boating photos! I want to live where you do! And that cat is gorgeous! Your pups are adorable. Good to hear that your sister is doing okay.
Cami, I cheat- I use a little application that is like postit notes for your computer. It makes this much easier! Do they still have 1-900 numbers? Your boss sounds pretty fantastic. Joey sounds like such a sweet kid.
Susan-
I hope that this new round of treatment is gentle on you, and allows you many good years ahead. You have an amazing outlook on life, and you inspire me. Anyhow, we are all here for you and are glad to hear you vent. And take all the drugs you need
PawPrint- thanks for the app info and the tip on Kohls having fitbits on sale! Is the iron helping at all?
Sas- how was Disney? sorry you got soaked by the dealership, but knowing your back will be better is what matters.
Luv, we only got about 3 inches over 3 days at my place. Needed, and certainly not enough. Hoping for some more this week.
3x- glad you have decided to stick around! Sounds like both you and your DH have tough moms- hope we all live to 99!
2nd- yes that is me - super into vintage. and I do collect vintage sewing everything! patterns, notions, fabric, spools, you name it! I hope your mom and dad are adjusting. I know it is hard on everyone.
Smaarty- you are incredibly nice for helping your son's friend get his place cleared out. That quilt is lovely! and Bradley is adorable!
Blondie- I think most of us are medicated
Spookies- "Bless his/her heart"- can be both sweet and evil. that is the beauty of it
Holein1- that dog with the coffee- so cute! i'll PM you for FBB's address. Ice deliveries??
FBB- Fight! You can do it! They better be taking good care of you there at he pokie.
Tang- pancakes sound so yummy right now! Glad you are doing well. Keep the aloe handy. Also- i can't believe you are old enough to have a 21 year old. Fingers crossed that whatever happens works out.
Badger- you did some serious catching up! that is how I felt the other day. - and the south has great ways of telling you off without being rude, right? It is always so polite!
Blessings- I hope your husband is feeling better. peeing on your beard? what? I missed something somewhere.
Nettie- you and your grandbabies are adorable.
Wren- I hope you are able to find a way to get some rest.
Dutch- good to see you! how are you feeling?
Got so busy today I forgot the date- my mom's bday! I am a terrible daughter!i feel like such a jerk! I never miss it. I just can't believe I did that.
Having my 6th month check up with my MO. *fingers crossed* nothing shows up on my blood work. I hope I can get some sleep at some point tonight.
alright- turning off the computer and Gregory Peck (something about a dancing caterpillar?? )
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Today is July 21st....National Junk food day....we all like something, that we know we do not need...
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Did you see THAT? I mean she named each of us, just like normal people do, and even commented to us! Individually! That is so cool JWow!
So I could read what SHE said, and know again who & what we were talking about! She is our little "condenser".... Ha! And here I ramble on about usually nothing, and think I'm really "with it."
Cammi.... Why aren't you up yet?
My neighbor is leaving today.... we are going up the alley this morning to have that last cup of coffee... I just hope she is still alright with it all, and not refusing to leave... We will go visit her though... supposed to be a nice place... Did I tell you what her DH said when they told him she would be moving there too?
He said "SHE WON'T BE STAYING WITH ME, WILL SHE?" Ha, ha! We all just laughed. They LOVE each other, but rather tired of it all! She will be 2 doors down... so they will have their own peace and quiet... She says "he couldn't do anything anyway".... and I said, "yeah, but I'll bet there are a lot of younger guys around there!"
In their 90's, but at least she still laughs about everything!
So nice to get to "know" you 3333333333! Your life sounds pretty peaceful! Glad your Mom's are still close by! You must be pretty "young!' My Grand-sons are 26 and 28!
Okay gals... have a peaceful Monday
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good morning ladies.
Jwoo - wow. Thanks for the update. I can't believe you actually responded to all individually. You rock. Sure makes it easier for me to remember. Hope your 6 mo checkup goes well.
Chevy - I always love your morning update. Update with flair and laughter. Thanks. Definately "you are with it". Makes my morning. So today's the big dhs for your neighbor. Has to be very hard for her and I bet you'll secretly miss her too. Love what her dh said. Too funny.
333 - nice to meet you. You sound like you have a wonderful life. To have so much family around sounds wonderful. All of our blood family is spread out and my sister is the closest at 8 hours away. :-(. We have lots of friends here which we call family.
Smarty / I love the quilt. Such talent. Amazing. I have many of my ds clothes and blankets from infants and toddlers. Would love to make a quilt out of the scraps one day. Would be so cool. Sounds like more of s project than I up for right now.
Nettie - love the pic of you and grand kids. What a beautiful family. Hope your back is feeling better.
Fbb. ( hugs)
Holeinone - national junk food day ? Never heard of that but any excuse to eat some chocolate right? I have cut most sweets from my diet but when I get a craving I just eat it. No worries. Think I'll have dh bring home something sweet for the holiday. Maybe ice cream sandwiches, or rootbeer float , or doughnuts or hmm can't decide. Hope you are getting a lot of pm's for fbb address. How very sweet of you to do this.
Cami. - I love your morning updates as well. You have your own spin on them. How old is Joey? My guess is young like a toddler?? He is very lucky to have you.
Susan - hope this new chemo kills those dang cancer cells with minimal side effects.
Tang - well we gotta know. Is your dd pregnant ?
SAS. Hope you loved Disney and are enjoying your new car. I love to read anything you post. So knowledgeable.
Maddie/2nd - hope things smooth out for you soon. What a great daughter you are. Wish this could be easier for your dad. I am sure he is very thankful you are there with him.
Blondie - did I read right, you just quit chemo ?
Well I am sure I still missed some people even with the great update to look back on so I hope everyone has a great day.
One more day Til my rfa. Hopefully some relief from this crazy pain. :-)
Hootie hoo
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So nice for all of you to take an interest in my story. It is nice to have all of the family near by. Life is pretty stressful though, MIL has alzheimers and my mom is pretty demanding and very unappreciative, so we do the best we can. The grandkids keep me going and put a smile on my face. My one grandson with special needs can only be cared for by my husband or me, when the kids need help, as he has heart problems and a trach so he can't be left with a babysitter, so when my doc says avoid stress, I laugh, easier said then done. Oh yeah holeinone, you asked about hobbies, who has time for hobbies? LOL Seriously though I am trying really hard to make time for me, I know my life may depend on it. I'm getting to the gym, reading and getting back to scrapbooking, which I love and my hubby has planned a short cruise for us with great friends in Sept.when this is all over. Thanks for listening, Stephanie
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wow....jwoo and peppermint...you guys r great......I need paper and a pencil to take notes to look impressive like you guys ...good job
Happy week to all...painfree, and full of energy for all !!!!!
New chemo starts Wednesday.....happy there is still something I can go on....not happy with list of se's. Have to switch my work schedule around to account for some bad days. Of course not sure how I will react from treatment, but I am m going to give myself a break and not work the week of chemo. It's one week on two off. Luckily I have control over my work schedule...got to have control over something ha.
Ta ta, for now
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Blondiex, I’m not on pain meds!! I was told to take Ibuprofen or Aleve, but it
doesn’t really help! This pain is so
weird and it’s so tiring to worry all the time!!I know all of you say I should insist on a scan, I’ve seen three different Drs. About it including my MO and they all agree that I do NOT need a scan!! I’ve even asked if I could have just for peace of mind!! They don’t think they can convince the insurance to pay at this point! As I sit and type this morning there is NO pain, but if I move or stand to walk, then it starts hurting! It is so hard to describe!! If I try to shrug my shoulders together in the back, NO WAY, pain is really bad!
333, you are a busy lady!! But having family close is awesome, even if it means we have to care for some of them!!
And Chevy, I’ve been keeping up with all the goings on with you and your neighbor, I bet in the long run, you are going to miss her once she moves to assisted living!
JWoo, I guess I’m just now reading your dx and tx byline! It seems to me that you had some aggressive treatment for only Stage 1!! Was this your choice?? Praying that you have a good check up!! I have my one year check up coming in August, one year from end of chemo that is!!
Happy Monday to all!!
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hey Susan. I'll be thinking of you on wed. How long does it take to administer it ? Do you take something with you to do ? Our chemo room had a tv attached to each chair with a remote. lol a remote is hilarious the tv is within arm reach. But I dont like much tv.
Hi again 333. Glad you are finding your place at home here. :-). Wow you take care of a lot of people. Who takes care of you ????
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I agree, Susan about jwoo and peppermint, I have to keep scrolling up and down to keep track of who said what. I hope you can get by without too many SE, some of these treatments are so harsh. I'm on #7 of 33 rad treatments, so far so good, but I have had RX twice before, so they've warned me of more potential complications, praying for the best. You ladies are great, I'm trying to keep up so I can contribute something meaningful, in the mean time, I wish you all well. Stephanie
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oh yeah Susan I forgot. So impressed your still working. You go girl !!
Nettie. I agree. You should insist on a scan. Never heard of an insurance company dening a ct scan for a cancer patient even if you are a year out. Probably is nothing serious but it slways better to Know it is not serious. If it is causing pain it needs to be checked out. I forget , how long has this been going on ?
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Good Morning all
Chit u guys know the computer or notes wht ever u do, by the time I get on I'm so confused as to who said what and where I jst wing it and yet when I read it I think Oh I want to talk about this.
Jwow and Patty very impressive how u talk to everyone, right now all I can remember is Stephanie--BTW Stephanie u made everything sound easy when u first started now we see the complications, please take care of u'r self first.
Chevy u'r going to miss u'r neighbor like crazy, but I loved what her husband said. LOL
Susan u are very caring to u'r customers, please don't overdo u seem like u would tend to do that.
Tang can u call u'r ins. Co. u'r self? or is that a no u can't thing. I don't understand especially since SE's from all this chit can do a number on u'r body and until u find out the reason for pain all u do is worry. Doesn't make sense to me.
Oh boy I make Joey sound like a baby, but he's my baby--he's 10 now and so loving and cuddly still nd I live with them or they live with me actually but I don't get involved in anything, I stay in my own space, which is fine for me I always liked being lone cuz I lived that way for so long--Joey is the only one tht can come in here anytime he wants, cuz he cuddles. LOL
Tang I'm back to u thinking about u'r back--now I'm not trying to make this about me, but I'm thinking about u--I have degeneration of 2 discs and lower vertebrae and sever Arthritus all rolled into one, I've done the PT which I still do and I think (my opinion only) that all homones and all the chemo I got sucked my bones dry and it happened within 3 months so if I don't move it's ok but as soon as I walk or do anything I'm in pain and sometimes spasms and then I can't move--it was almost funny the other day, I got a spasm when I was in Joey's room and couldn't move he said I lost all color and he stood there telling me not to move and brethe slowly with deep breathes, got me some water and said don't move at all until it passes and started rubbing my back til it left. here's a kid that has more sense than me sometimes--I also have a valve in my heart that got screwed up maybe from Herceptin who knows but u'r back should be looked at and treated as much as they can. They told me there is nothing they can do to help me but then again no one want to operate on me cuz of my anesthesia problem, that's why my flying organdas are still all over the place cuz no one wants to operate, but in u'r case maybe u can get some relief. Please do some research on it, maybe u can get help.
Well that sure seemed about me, didn't it? I don't know what answers anyone has but I do know nothing in me is the same as the woman who worked full time and didn't miss going out with everyone I wanted to spend time with. Everything has changed but I did meet all of u which has help me immensely with my attitude and I can vent, rant and be silly all in the same post and u gals never judge me. LOL
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Patty - way to long, problem is, it is not consistent, pain today, maybe tomorrow, maybe for a week, then it will be gone for a few days, then back again! And I can't correlate it with any certain activities! -
Cami, wow you could not say it better. CHEMO sucked the life out of me too. I know that if I had a choice I could have refused it
Not sure how they keep track of all we write even with notes I am always lost lol
I try to keep up, I am better now I think
333 so glad your moms are still around.
Bloody hope you feel better
Chevy I am sure you will miss your friend
Wish you all a great week, I will go for my usual nordic pole walk in the afternoon
I am loving that. Now wear a knee band and the pain it's under control
I never thought this could do so much for me.
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Enerva that's why if u never had it, u really can't understand it.--That's why I now understand the slash, poison and burn theory and I wonder if I had a choice what I would do. probably do chemo not knowing al this, but they didn't give me a choice and it was just u'll be with us every week for a long time. So I am greatful for saving me, but I really didn't think all these things were going to do what has happened. Well I had this month off of Drs. and start up again next month---but I'm sorry I'm really complaining a lot today--really I try not to, but for some reason I feel it more today---so u guys are stuck with me moaning like a baby. Bwhahahahaha
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For anyone needing a laugh today:
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Thanks Wren--I need one.
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funy you mentioned I also have those days. I am with you 100%. I love this tread cuz when we feel like that it's ok to vent
Plus when I did chemo I didn't have you ladies. It makes a great difference to just have a group of people who know exactly what is like.
Here is a note I found
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GOOD MORNING OWLETTESS IT'S 3:29 PM EST. THE DAY IS STARTING YAY.
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Susan good luck with this new chemo. Have faith ( as you've always had) that if this chemo stops working there will be another "something".
I talk with PhylisswhomImisssomuch almost daily, I have permission to update you on things when she's spinning to much to sit and post. With Phyllis that very "something" keeps happening. She's leaving Friday to drive to Houston for the assessment for the clinical trial.
Something unexplained happened to her last Monday a week ago. All of us have no idea about why all the troubles happen, but then marvel at other things. Last Monday she went for chemo. Her port was blocked. The nurse called for orders to unblock it. Declotting a cath takes several hours. Her doc came in towards the end and said she had just gotten off the phone with the Trial Doc Guy. Her doc said she fit the criteria.
Phyll's ddoc had made several calls the week before without success. Mid-morning Monday they finally connect.
The unexplained---the cath was blocked. If it had not been blocked, her doc would have done her pre-chemo assessment and the drip would have started. Had the drip started before the phone call, Phyliss would have been in eligible for the trial.
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33333333333333333!! Hi kiddo! So glad you "joined" us! We all have either Mom's or MIL that either ARE or were the same way. Can't talk about my MIL.... she was not nice even when we were all together... And she was even less of a Grandma ro our Daughter's.... Her loss!
My Grandma was VERY demanding.... so much so, that sometimes when I was taking her somewhere, she was always telling me HOW to drive, and how to get there, and this from someone who never drove!
Well she tried one time, but Grandpa said she drove into a Lake, so she didn't drive again. But she was such a CRAB! Sometimes I wanted to shove her out that car droor, and then drive back over her!
But it all changed when she had a heart-attack! I was the only one she remembered, and her Dementia came on so fast! So she was not mean or crabby any more~ .... just mostly helpless, and dependant on me! So I was the only one in her life.... And I would run to see her either at the AL home, or eventually to a few nursing homes.... She was like my little kid.... and it made her so happy just to see me! Amazing how your feelings can change completely.... I think it happened so I would be more patient with her, and I think God knew that I needed her in my life at that time.... My little grandma..... In fact she was my step-grandma, a little German woman, who thought she could rule the world, and every-one in it! And man, she tried!
Time and love changes everything..... right?
Peppermint! I miss her already.... But she was in a good mood this morning! She said she was probably pregnant, is why she was so dizzy all the time in the mornings!
I said Couldn't be Eddie's, could it? And she just laughed.... Then my DH was at her front door, and a guy came up, to inquire about an address in the next block! Theresa asked who it was, and he just said "some guy!"
And she asked if he was good looking? I said, "Oh give the guy a break, you are alREADY pregnant!" She told me I was her girl-friend! That made me so happy! Yes, we talk that way all the time... I just hope I have her sense of humor when I am 90..... shut up Cammi...! No I am not!
You guys, she is laughing her butt off.... I just know it.
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Nettie it'd take many questions re: your pain and the W's related to laying and standing. But I can react right away to the " If I try to shrug my shoulders together in the back, NO WAY, pain is really bad!". The Trapesius muscle attaches on the thoracic spine, the shoulder blade(scapulla), and the back of head(occiput). It's a bugger of a muscle when it's unhappy. It'd take forever to explain why. The standing and sitting thing are very significant too. The overall problem is twofold or perhaps three maybe more. But I'm on a flow of thoughts.
There are two separate issues. The fear, and the physical pain
1. You're scared of mets. Your posts clearly communicate that you think you have mets. No one's listening to your complaints(medical usage) to verify mets, and why you are having pain. The fear, you need a counselor. This is a long road. You need a plan to help with the fear related to cancer. Next.......
2. Physical pain: With Breast Ca met'sing to the bone because of the cells growing from the same germ cell (all cells arise from either the endoderm/ectoderm/or mesoderm), why your docs aren't responsive to your complaints is unusual. When four doc's don't want to order tests is unusual. It could be that the referral from the MO has written or said something in it, that makes the referral doc consider that your complaints aren't real.
The MO could have ordered the tests needed. Referrals out to consultants aren't a requirement, because a test related to the skeletal system would fall under the scope of practice of a MO, for this disease of breast cancer. Please, make sure you fully understand that sentence. Very important to your situation.
Asking the MO two blunt questions. Basically, "Do you not believe I have bone pain?" " Have you communicated verbally or in writing anything to the referral docs, that you think my complaints aren't real?"
The reasonable sequence for complaints of bone pain after a diagnosis of breast cancer can be the following. BUT, BIG BUT-- it doesn't have to follow this sequence. As you know insurers want the cheaper tests done first. BUT with a cancer, jumping to a higher level test is done everyday in the USA. Canada is quite different, there approval system has different controls.
Sequence by cost: local xray> ultrasound> MRI> PET. CT scan is better for soft tissue, and MRI is better for solid organs and skeleton. BUT all the tests are being used in new ways as the equipment and the radiologists, become more sophisticated(better).
Your complaints encompass most of the spine and the pelvis. Plus, you have concerns about nodes. There is a communication problem.
What scans have you had after dx of BC? I'll make a further comment after I see that.
HUGS sassy
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Chevy u have a camera in my house Ahem----Oh I don't want to hear about u Grandma and how u gre close to her--u were lucky she even talked to u. Remember when I told u gals I had one Grandma and she didn't like me and told me so. So she was mean, that's mean--when I'd be in a room it was why r u here--I'm with my mommy. All because I didn't speak Italian to her and I looked more like my mom. who she didn't like--my mom would talk Italian to her but didn't pay all this mighty attention to her and my dad said u don't speak Italian to anyone not even her. (He didn't care who she liked) Obviously I didn't see a lot of her It's funny now when we talk about it LOL--So who's grandma was worse? LOL
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That stupid priuspain starter. It's fine, but the pain party keeps going. It's like a bunch of drunks at a party that you can't get to leave, or they leave and come back for one more drink.
Chevy loved that from the husband "she's not coming here?!!!!".
Cami, HUGS, Always love when you talk about Joey. Did you ever notice your quote that I put in the topic box?
Wren That's a keeper. I love the Internet. Can't imagine the days of waiting for Readers Digest, Playboy, the funny papers to get our laughs. Now the world is open to use by plugging a few words into Google.
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Cammi! Damnit, I'm sorry! Some people are just born crabby! They have their own set ways.... For SOME reason, maybe she didn't like girls? When I was little, a neighbor gave my Brother a QUARTER, when he mowed the lawn.... But since I was a little girl, I only got a dime and I trimmed the edges with those grass shears! ! So see? He hated women.
I didn't like my Grandma .... for the longest time... but I don't think she had any use for us kids either... But it was after she sort of lost her mind... that her whole personality changed....! It's so hard to explain... She wasn't the same person.... but she was the person I grew to love, and could care for her.... so it almost doesn't matter that she turned her whole family away..... in the end, she had me.... Funny how I changed too!
Sas! So good to hear from you! You always make so much sense! I don't understand a lot of it, but I know what you are trying to say.....
You know Nettie.... Maybe make a copy of what Sassy wrote, and take it with you.... Or high-light some of your concerns, and ask them point blank, What the Hell! It IS your life.... your body.... If you are afraid, I would make sure those questions got answered.
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