INSOMNIACS place to talk in the wee hours

sas-schatzi

Maddy, Thyroid issue picked up as a goiter-enlargement last may in yearlies exam. 3 ultrasounds and a bx. I just can't figure out why this test thyroglobulin wasn't done before. I know Cea's arean't used for screening, only after cancer dx'd by pathology. But until I'm given a rationale why it wasn't done. I'll question it.. 

Both docs reacted to it immediately, changed oars. Well WTF then why didn't the order it earlier. I asked b/cI wanted Hashimoto's ruled out. if both would have been abnormal----hashi's. I had no clue about the neg anti's and positive tH being an indicator of cancer. Till I read. Poop.

Maddy read about the trapezeius(sic) muscle. it's the stinker for what you describe.

Cami I'm okay , no knives. Seriously, I want to retire from all this intense learning. I want to learn how to play. Got a book on it? LOL

Chevy-----sorry had a thought lost it---now I can add low cortisol to chemo/anestesia/drug brain. for memory loss

Chevyboy

Anonymous

Good morning ladies (or goils)! Just waking up. So happy it's Friday (need dancing smiley here)

Chevy, you are in good form already this AM, loving the 50 shapes of grey cartoon! Shouldn't have said anything, difficult time falling asleep last night. Oh well. Not sure I'd catch "2" meant for me, is "2nd" too much?

The much-talked rain we were supposed to have: disappointing, just a couple sprinkles. Much ado about nothing. 

Chevyboy

No, okay.... never mind the 2222222!  2nd is you gal!   No, maybe we shouldn't have talked about your sleeping.... It HEARD you! 

I slept better last night..... Just keep thinking about Lacee, and wondering if I "missed" something... like if I should have noticed she wasn't herself!   But she would always snap out of it....  So It's too late now....  at least she isn't having any more problems....    She's just asleep......

We got 7 inches of snow, and it is a HEAVY one..... another storm coming in.... I'm fooling around in my closet.... just organizing.

Anonymous

Chevy, please stop thinking you missed something. While we love our furbabies as our children, they can't tell us when something is wrong and we can't read their minds. A lot of things appear as againg, who's to know if it's normal aging or something more. The best thing I can do is tell myself I did the best I can at the time. I can't add the burden of thinking I missed something to my sorrow as nothing productive will come of it. 

Jazzygirl

Chevy- love that photo! My fantasy man comes with a hammer and mop!

Wren44

Cami, Just write stuff down while they're talking. That will get you back on track after a brain fart.

Holeinone

Good Morning all...home from rads..

Chevy, is DH a football guy? Is this a big deal for him? 

Smaarty, I am so envious of your sewing runaways.....the swap on Monday also, well not envious for that, but it gets you closer to the finish line, and that is what we want, to be done with all the bc bulls~^t.

Cami, our little one, I picture you being 5'1", why is that? Short and mighty...

Tangandchris, do you have one child? 4 yr. old, how fun...hope you have an easier day, get that pesky infection cleared up and on to chemo. Cami said it, try not to think! 

Sas, you had to buy a BOOK to teach you how to play? Yes, an intervention is needed here. I have spent the most of my adult life playing...taught my kids how to "play", maybe did to good of job on that. They both are compulsive about there sports.

Teka

Wavy hello to 2ndtime/Maddy, SweetPea, Enerva, Luvmygoats, Wren, Jazzy & all here

Anonymous

Aw, thanks, Hi1! 

Wish you all lived closer, we have a natural hot springs spa really close, then we all could play. Sassy, don't you remember how to play and have fun? We gotta change that.

** warning! whine and cheese (say the cheese for grilling) follows:

Thanks for making this a place to "just be." Don't have to put on airs or pretend I'm something I'm not. Ok, just gotta release this: there are times I just want to shout (at some people, not all of you, of course): No, I'm not ok and yes, I still hurt (way longer than I want! This isn't a ploy for attention), I've had cancer (not once, but twice, the first time I convinced myself I was cured, but sadly that isn't true). The smile I sometimes have is just a game because you tell me I should be happy. Yes, it's about my attitude, but what about yours that you just can't accept who I am?  Some people.... (End of rant, thanks)

TTFN (ta-ta for now)

Holeinone

2ndtime, natural hot springs are so relaxing, I love hot water! We have a hot tub, on our patio, I have not been in it since last spring, could not during chemo or now during rads, but once I have  healed, I am turning on Eric Clapton and having a adult beverage and let the relaxing begin

We could take Sasafras for a sunset walk on the beach, build a little fire ( is there places in S. Calif that still let you do that? )

I have lots of fun planned for next summer, hopefully my body & mind will cooperate...

stellina

Hello, fellowlettes! 

(Sorry if that sounds too weird, but it seemed more practical than fellow owlettes...)

Anyways, the herceptin made me very drowsy, I sleep very much, so less present around here, which is not a good idea because there is so much encouragement and understanding here.

I feel quite low today, not because I had the second herceptin treatment. But because my "lovely" onc wants me to have hormone therapy, even though until now she was averse to it since the tumor showed responsive toless than 1% of both ER and PR. And she said it must be 0% in order to be negative. 

I really feel reluctant to the hormone therapy because of my age and even more because of the side effects of the tamoxifen. She wanted me to have zoladex as well, but a fellow onc she consulted told her that tamoxifen would do given my stats.

I want to refuse the tamoxifen, but I'm worried the onc might get furious and what if she stops the herceptin? Can she do that? Do I risk a change of oncs? 

Sorry for this drop of desperation, maybe I'm having the wrong attitude in feeling little enthusiasm about hormone therapy. Maybe the fellowlettes can lead me on the right path if I stray?

Thank you.

May the force be with us!

Wren44

We celebrated our wedding anniversary (observed) by going to a hotel that had what they called a soaking pool heated to 102F. It was 3 feet deep, huge, and had islands in the middle. The weather was in the high 30's and the pool created steam that made it seem otherworldly. We stayed one night and managed to soak twice. It was saltwater with very very little chlorine. We both really loved it. DS has a hot tub that we enjoy when we visit, but I don't think we would use it enough here to pay for heating and the work of cleaning.

Where is the hot springs? SIL lives in So Cal (Claremont), so if it's close to her it might be worth a visit.

Enerva

Sas, Cami Chevy pls never leave us, i need you lol I am slow to keep up but this is one of my favorite forums lol

I am down cuz one of my sister may have bc. We dont have the biopsy results yet. We were to get them today and some as s ho le doctor went home and didnt sign the report so the lab refuses to give my family any info. ;( i am very upset cuz i dont want any body to get bc. Also i was the only one in my family and now there could be 2 of us. ;( 

Holeinone

Stellina, there is no way she could or would stop your herceptin. I know so little about this, but with your dx, and the fact you had chemo, your potential benefit is not as large as a more involved dx,  (positive nodes ) as mine. I do not know if I am explaining that properly but I'm sure you get it. 

Lots of ladies on this board are very well informed, they will have some good advice for you. You can think about it all, if you do decide to give it a try, you always have the option to quit. That is common.

My SIL tried for a few months, then stopped, I was shocked as she had 16 nodes (?) with cancer, cannot remember the exact #, but alot. I start Arimidex in 2 weeks, keeping my fingers crossed for few SE..

Chevyboy

GolfGirl!  You mean the Super Bowl?  I guess we really like the Bronco's, because they ARE in the Super Bowl... but we don't really sit and watch the games! 

I don't even sit and watch Nascar, even though I listen, and have the TV on.... and then I run in the room when I hear something going on...Ha!

And Sass needs an intervention? Or is it you?   What "game" is she playing?  What am I missing here?.....  do I have to go back even further?

2ndTime....  You know, actually I don't know how you guys do it....  Especially you, that have already gone through this once.... Then to face it again!   And to get tubes, and implants, and  go through chemo?  I don't know how you gals can even get out of BED, much less try and be strong!

You don't have to be happy..... not all the time.... maybe just once in awhile....  Nothing wrong with your attitude....  YOU have been through more than most women that I know!  

Sometimes ..... like today, my attitude just sucks!  I get so mad at DH, for just acting stupid!   I mean I don't MEAN to, but today I just can't help it!  So today is not a good day for me.   And it's just stupid things!  Maybe when he gets back, I will be more patient....  My nerves are just shot...  and I don't want to listen to any chit....   So how's THAT for an attitude! 

Okay.... if you can shake it, let me know how you did it...  I'm going to go fix a chocolate coke.... 

Stellina!  You can be in a bad mood too!  I would not like to start anything new either!  My Oncologist wanted me to take Tamoxifen also..... So did I!  But after 14 months, it didn't work out.... So I quit it myself.  You can TRY it, or anything else....  Most women are normal, and have no problems...  but I'm not like the rest.  Some women take 1/2 the pill... or maybe every other day.... Ask your Doc.... See if she slaps you along side your head.   I felt that taking Tamoxifen would HELP me not get breast cancer again.... but we just don't KNOW that for sure.... NO-one does....

We just watch, cross our fingers, and HOPE that it never comes back, or starts somewhere new.

Cammi and I might lead you astray all on our own!    Just do what makes you comfortable....  start out slow maybe.... see how it goes.  

Wren, how fun!  You should have taken Stellina with you...!  And 2ndTime!  

Now Enerva!  Why would we ever leave?   Isn't that Owl upside down?  Or is it just me?   Ah man, don't worry about anything yet!  That A--hole!  See?  They just don't care!   And tomorrow is Saturday?  That jerk!   Call again tomorrow!    That would make me mad....  in fact it did.  I'm just generally cranky today.... And I hate this snow...  Okay, what else? 

Chevyboy

Anonymous

Blessings, you are in my thoughts.

Hi1, there are still beaches with fire rings, but that may change by summer. Beaches are trying to eliminate them.

Wren, she probably knows - it's Glen Ivy (less than an hour away I would think). Week days are best, less crowded. DD went last week - turns out it's free admission on your birthday. Wish I would have known that a couple weeks earlier. The main draw is Club Mud, fabulous on a hot day (but bring an owl swim suit)

Enerva,thanks for the wonderful photo.

I need to put down the iPad and get to some errands....

Holeinone

Chevy, sadly I might need an intervention, ask my DH, he might agree!  Sas said, did we have a book, that taught someone to have fun? I went back and read it again. I thought she said, she actually bought a book to teach her to have fun..

Grumpy days, ah sorry....It happens...

Oregon Coast, which is cold compared to S. CA,  allows fires...wonderful to build a fire, watch the sunset, listen to the surf, be at peace with the world...

Enerva

Cami   Oh i mean cuz Sass was saying she needs to retired lol I could not go on without all the information you guys provide here .

i just love it. 

2nd time here is another pic i like. 

Wren44

Enerva, I love the owl with the upside down head. Makes me want to investigate owl anatomy. Must have some swivel thing in their necks. Fingers crossed for your sister.

Holeinone, I've been on Arimidex for almost 2 years with few SE's. I have some hot and cold flashes but not major. I have a DEXA this afternoon, so we'll see what it's doing to my bones.

Stellina, You might give tami a try and see how it goes. Or ask for a second opinion. A lot of hospitals have meetings where all the oncs get together to discuss cases. Maybe you could get a lot of opinions that way.

stellina

Thanks for the replies !

@ Holinone: for the moment I still haven't "digested" the fact. After all, it was my onc who said that hormone therapy was not for me. And now the change and I'm expected to agree quickly! I can't handle it that fast, especially since I worry that menopause will strike in along with tamoxifen intake! 

Besides, another aspect that worries me is the effect on the eyes, since my father lost sight on one eye due to glaucoma and has the other eye with very weak sight!

@ Chevy: ah, my onc seems so adamant now about me doing the hormone therapy! With the low responsiveness to HR, I just don't feel very enthusiastic about piling other SE - and I'm thinking of the long term ones - to the threat of heart issues, blood issues and so on... And my onc is not a very treatable person. 

I will have tumor samples retested.

@ Wren: if the retest results give a higher percent of HR responsiveness, I think I'll be less reluctant to try... If the oncs all get their protocols from an established organization, wouldn't a second opinion amount to the same result? That's keeping me worried...

Enerva

here is another one  

i wish i could see it in person. I never saw an owl out in the forest. 

tangandchris

Hola!

Working today, so grateful that I work from home on days like today. Well, ever since10/24 when I was dx'd I've been soooo grateful! I'm tired today though, I think I'm hitting a wall of tiredness from not getting enough sleep.

I have a 4 yr old and a 21 year old....yeah, yeah...I started waaaaay over.

What's everyone got going for the weekend? We've got some company coming over...some old friends that we haven't seen in awhile. She is in disbelief over my cancer, I love her, but I hope I'm not trying to make her feel okay the whole time. Of course the game Sunday. thinking about making potato soup

Chevyboy

Stellina.... You are stage 1.... grade 3..... You also had chemo... And a mastectomy....  how old are you?  Ask that dink of an oncologist for another test.... Ask about a test to test your gene's.... for anything that MIGHT conflict with the effects of the chemo drug Tamoxifen.  I just hate when we can't talk to them!  Can you get another opinion, and telll THEM your worries?   

I metabolized the Tamoxifen well, they said, and had just the usual side-effects.... Except I lost my hearing..... BUT, the SE's that are on the labels CAN happen, I mean like stroke, cataracts, and that's why I say, a test will sometimes show what your response might be to it.    I don't really talk about what happened to me, because it is rare, but things do happen.    "Certain women with a certain gene, will react differently to the Tamoxifen."

I mean like Jackie, (Lilli).... she takes Arimidex, and is doing fine with it!  A LOT of women can take the SE's.    Some can't.     So you aren't alone in being worried about starting something new.  I wouldn't want to advise you...  one way or another.  But just remember, you can TRY it, and see what happens.... 

Anonymous

T&C, I have a 20 yo and 32 yo (stepson), I always get the look when people figure the age difference. Not their concern

Tomorrow, have special BC survivor event at a local amusement (not Disneyland, unfortunately). Only 50 picked, was on wait list till notified Wednesday I'm included. Free admission and parking, special breakfast, photo opp, hey, why not? Somebody has to do it. For fun and for free.

Enerva, thanks so much for the photos, in case I forget to mention it. You find beautiful pix, love the one with the owl having his/her head almost turned upside down. Crazy.

Sassy, how are you holding up?

Wren44

Stellina, It's not a standard organization giving out rules. It's more like a case presentation where everyone can ask questions and give ideas. I can see your point about not having a very high ER+. I don't even know what mine was.

gardengumby

hi ladies.  Well, we are back home now.  It was RAINING and 45 when we got home.  After seeing how dry it was in California, I wished I could send some of it there.  Hope they get some wet stuff soon!!

We're at the boat show now, and I'm planning to attend a day of the sewing expo next month.  The place I retired from just called and asked me to return for a week so that my former co-worker can take a vacation. Another company has asked me to do some contract work as well, but I don't know the particulars yet... so don't yet know if I'm interested.  I agreed to the week at my old place.  A little extra money will come in handy.

On the home front we are getting ready to watch the Superbowl Sunday and cheer on the Seattle Seahawks.  I want to complete the final settling into our house and break out my sewing machine.  I miss making stuff.  

My GERD/hiatal hernia has been causing me grief at night. I think I'm going to buy a 2nd pillow to keep my head/shoulders a little higher and see if that helps.

Nice to "see" you all.

stellina

Chevy, I'm 37. Well, I was told that oncs bend themselves backwards to ensure that the patient gets all possible treatment so they can't be blamed to have omitted anything.

I just wonder how much I still have to do, it seems to have no end. I'll have some tumor samples retested.

Chevyboy

Yes, I know Stellina.... they do what they think is best....  I was offered Femara, when I refused to take Tamoxifen anymore....  But they  just wanted to help all of us, I know.  But she was only doing what was expected of her.... and going with the knowledge, that those drugs will keep us from getting cancer again.... that's why you go back every 3 months, for more blood-work, to check the "markers."....... 

So far, I am doing good!  Been over 4 years....NED....  That means a lot.  I only go once a year for a diagnostic Mammogram, and blood tests for my annual physical. 

You are very young!  Man, I wish I were that age again!  Ha!  My Daughter's are much older than you!    I mean my Grandsons are only 10 years younger than you are!  You are just a puppy!   Ha, ha!  We will all take care of you....  We should know SOMEthing at this age! 

Teka

I'm 60+, and feelingwith diverticulosis!