INSOMNIACS place to talk in the wee hours

Spookiesmom

Hey Liverly, can you stop by Chevys next month and bring a few of those Cowboys or farmers or whatever's for SAS and me?

Marlene don't'cha hate when the dog has more hair than you do? But you still have brows and lashes. That's cool!!

Spookies bday is Halloween. She got her name for that, and I figured in full coat she would look like a small Cousin It, in white.

Jazzygirl

Patty- thanks for asking me about the steel drum video. Unfortunately, no one ever sent me one. Probably good to note for next time to be sure a friend is there to video for me. They told people not to come in until 8:30 p.m. and between that and the kids chairs at the school where we were practicing, I had no takers! Oh well, next time!

Marlanb- I love your sense of humor. The comparison to Uncle Fester with the lite bulb is hilarious.

Chevy- ride a cowboy? If you say so. Plenty of em around here. You can spot them by their "bowed legs."

Off to med apts today. Will be in touch later with updates!

Rosevalley

Love the wedding theme! Pretty cute. Marlana you have to tell that dog to move over.. I just got up 5:50am to let the dogs out. what do I find at the foot of the bed on the floor... a present from the cat! Emmy loves me. She knows I am hunter retarded so I was given a big fat field vole as a present. Breakfast is served! Everybody say awhhhh! To be loved by a cat is an experience, at least it was dead.

sas-schatzi

Good mORNINg Owlies I love it when someone does a catch up post on everyone. I've read them all, and then by posting time I forget if I haven't done split screen.

Patty, majorly glad they were good. The ones that I sent to Susan are in the fed-ex nether world. What a lesson. On your niece, Dear sister must have been following a plan. Will be interesting to see in the future if the plan worked. Steve only threw one tantrum as a toddler and one tantrum as a 16 y/o. Yes, I am proud-very. But I missed the lesson on how to learn how to relax. I see him stressing to much recently---couple three years. He's coming home Monday. Maybe we can have a pool chat.....On the troll. She blew in and made a big deal about everything was wrong on BCO and that the Mods should change it all. The folks that posted were very nice to her and she made out that she was lamblasted. The last post was mine, but I think Spookie's right she blew out of here before she read it. The bad part is she will likely bad mouth BCO which is a shame.

Spookie, sounds good. What 's the part about the boats mean?

Blondie, one of the best parts about meeting you is (hope this comes out right)---You are a strong gutsy lady. Oh, that was easy, been mulling it over. Over time I worried when you told stories about the kids. Not worried anymore.

Marley, you have a beautiful bald head. Took me awhile to get the analogy between egg and jelly bean. I'd forgotten I intentionally went sunning b/c my head was so white. Dear Greg shaved my head. Sounds crazy, but we had some good laughs. Still have strong memories of it.

Jazzy, I agree with Patty on the artichoke. Never considered anything about how it grew. Wonder how and when it was discovered to be eatable. .....Contract signed?

HI1, hate mold and mildew ugh. It's just so tough to get rid of. In Florida we have black mold that has adapted to growing in the sun which is opposite of most molds. Concrete and outdoor walls have to be bleached. Then I'm guessing it's a different mold that grows in the shade. In places that have mold on the concrete, it makes me crazy seeing people walking on it. Then thinking about it being walked in the house. Early on after moving here, I tried to make a rule that shoes had to be left outside. Didn't work. To many creepy crawly things. At the time, pine scorpions were common to the area. They're gone now, just as the tree frogs are.

Frenchfrye you coming? It'd be quite a trip from the Keys. About 6 hours? Florida is sooooooo big. 6 hours from my old place in Ohio would get me half way to Florida. Here it doesn't even get you half way through the state. You doing okay? Hands? How's hubby doing?

Rosie, you never answer me when I ask you something. I'll try one more time. I know nada about the chemo drugs except for what was used on me. What is it about Ibrance that you feel so strongly about? Why have the docs been so resistant? I know they're is a sequence etc, but it would seem that breaking the sequence would be appropriate here?

Susan, good luck with Mom. You wrote sometime ago that the situation was getting worse, now even worse. Sorry. Also, sorry that brother is on a different page. Couldn't be easy that he was of like mind to your thinking. This is similar to what Maddy has had to put up with except they're two brothers. Both contrary....

MarlanaB

Rose--my smaller dog has a ridiculous prey drive and is lightning quick. I've had a few moles and gophers as gifts and even a roof rat. Ewwww.

Chevy--never been on Farmers Only but since I live in Ventucky, it's always advertised in commercials. Nothing wrong with a cowboy, though. And yes, I mean those fuzzy caterpillars. When I was 6, I was convinced my great-uncle glued them to his head. Little did I know that I would inherit those eyebrows in my teens.

Jazzy--what can I say, raised in a family full of twisted wackos, I never stood a chance!

Spookie--never thought of that breed as Cousin It but now I definitely see it. And I'm now missing about a 1/4" of eyelashes on my lower left eyelid so I try to use mascara to shove the remainders over like I'm a graduate of the Donald Trump School of Makeup Application.

PattyPeppermint

Sas - oh my. I had another sample last night around midnight. Very tiny bite. Oh my. Like manna from heaven.

Chevy. - you are too hilarious. Love your daily humor.

Blondie. - good morning. Hope you are feeling great after along day yesterday.

Loverly - again. Love the pic. Takes my breath away. Glad to hear how close you are to yours sis. I have always ad that too. Feel sorry for only children. Think they are missing something wonderful

Marla - you are beautiful! It took a minute but I see the uncle fester resemblance. I used to always say the same thing about myself when I was bald. You are rockin the bald look. Love it that you can find the humor in these hard circumstances. Always good when we can laugh at yourself.

All is well today. Feeling great.

Hugs to all I missed

Hootie hoo

Rosevalley

Sassy you asked- Ok last wednesday oncologist wanted to try Taxotere (most folks call it taxoterrible) I declined. It would probably work faster and more miserably. I already have neuropathy in my feet and no feeling in my bladder from Taxol. Not again. If your life expectancy is a couple of months why do that to yourself. I wanted to try Ibrance because it appears to have few side effects, low white count being the most common. It works in strongly ER+ patients (I came back ER+ 100% on the ascites fluid). The women who took the drug got over 2 years progression free- of course I was hoping to get a hold of the drug when my cancer was still in the bones. Now that it's out and everywhere in the omentum and peritoneum really nothing they do short of peritoneal chemo is going to work... and even that doesn't work very long. I haven't come accross a single case of malignant ascites that was stopped by any drug. So at this point nothing will work, all palliative. I figure I will try Ibrance but the opportunity for it to do anything for me realistically left in March or April. I have 3 spots on my spine that hurt so I have signed up for radiation and they want to do an MRI first before they zap. I hope that brings some relief or I will request a patch.. longer acting then the pills.

sas-schatzi

"OMG They Found A Cure for Stupid" the first 100 pages rivals Saturday Night Live from the early years. I joined it when it was in the 20 pages. Stayed up most ot the night reading the first 20 some pages. Spookies right, do it with an empty bladder. I made a tin hat. I would wear it when I was reading and posting. Inspiration . Steve came in one night and saw the hat. He quietly said "Mom, what's going on?" He was relieved when I said it was me just being goofy and not to worry.

Around page 42, a gal posted (paraphrase). "You will all go to hell for making fun of breast cancer, you are nothing but a bunch of cackling hens" That's when all the clucking started. Hard to believe it could get funnier. I was the Ombudsman.

One time someone posted that our stuff was appearing on fb. Verified it. You could almost see everyone flying around. Lot's of people had their real names and pics. Names changed and avatars. I looked around and Shats was on the floor next to me. That's when I became sas-schatzi.

It faded right after the 100th page. Alyson and Veggy tried to revive it several times, but it had run it's course. Gals moved on and some passed. Konakat and Lowrider. Veggy later on.

puff, puff, pass

https://community.breastcancer.org/forum/102/topic/765586?page=1

sas-schatzi

Rosie, Thanks Sucks, that he wouldn't give it too you. How they can get away with denial of treatment. I know there is cost and other excuses. This a really rough analogy. But remember when Cat Scan was introduced in the 70's. Big deal when one was ordered. Same thing when MRI came in. Now they are ordered for a hangnail(facetious). Ibrance would seem such a logical choice if the affect is so dramatic and s.e.'s so few. Have they done anything with Dose Dense on it? I maintain I've survived b/c I got a single DD of Cytoxan and taxotere. My cytochrome 3A4(slow) and 3A5(fast) are abnormal. Forgotten what I had figured out exactly about the processing once those were tested. Anyhow, now it would be considered dose dense versus an overdose. Plus, the doc put me into renal failure by hanging the wrong IV fluids( they didn't tell me about the error till a couple weeks later). Asked the Mo if they're was anyone willing to figure out what happened. He looked out the window and said nothing. I said I wasn't willing to trade off all my organs when no one was willing to figure out what was different. Overtime as the errors and cytochrome abnormalities became known I pieced the scenario together. No clue if my assessment was right, but their was logic to it. Inadvertently lucky. Diverged there.

Patty, me too, I would always try to make them last as long as possible. Pretty hard when it's chocolate

sas-schatzi

Marley, Fun taking this out of context " Nothing wrong with a cowboy, though. And yes, I mean those fuzzy caterpillars."

They're was so much talk of marijuana, I took a pinch. Don't tell anyone, I might get in trouble Di is on her way to clean. It will be interesting to do side along cleaning..............

Freygea

Oh Sas, I would love to meet up with you one day. Maybe once I am done with these rounds of chemo we can plan a day trip down the road.

Oh Chevy- they still make corn cob pipes? I used to use those handy dandy toilet paper rolls with a bit of aluminum foil back in the day.

Marlana That is still a great pic. I sure have the Uncle Fester Look down right now.

A bit of peripheral neuropaphy but not bad. Had my Neulasta yest and still using lotion on my hands. so far no further swelling *knock on wood*.

Question- Tonight is 72 hours post chemo- you all think it is safe to let my chihuahua sleep with me tonight? I washed my sheets and all bedding. I keep the room cool and did not note any night sweat last night? I am thinking 72 hours is a decent time from my chemo day. I rreally miss her.

sas-schatzi

Frechfrye stellar. I'll start saving.

Rosevalley

Sassy- I have friend who innocently asked why can't you take these docs to court for blocking drugs that could help you? I told her as amazing as this will sound- There are no standards of care in oncology. There are no algorithms to follow, no sequence suggested to ensure good quality care, - it is all whim and very little science. They can cure you or kill you and there isn't anything you can do. No legal recourse. They can do nothing and order everything in the book. There are no references to check to see if this is a reasonable course of action. The patients are kept in the dark and the entire oncologist paradigm is set up to protect the oncologist not the patient. Name me another area in medicine where there are no standards of care? The doc gets a blank check to do as he pleases? I asked repeatedly for tumor markers because they correspond to my scans. I was denied. He doesn't do tumor markers, and told me all he needs in my H&H to see how I am. Well my H&H is great, my cancer has spread like a 4 alarm house fire and the game is over. That tumor marker test was $30 and he was too pig headed to use it. even the Mayo doctor couldn't figure out why they didn't run it. So he thought what he was giving me aromasin and whatever else was working. I couldn't even get enough information to know if what they were doing was working. I asked every visit to try Ibrance and every visit was told no. I asked why. He wouldn't say, only "no." Finally he wanted a bone scan.. I told him no more bone scans.. ok with CT scans. By then I had suffered all these GI symptoms for over a month but my fate was sealed the cancer jumped to lung, liver and gut. Anything they do now is squirting an out of control fire with a water pistol.

More then anything else in my life I would like there to be mandatory standards of care applied to oncology. I would like minimum testing on surveillence, algorithms for drugs given for different BCs. This is possible in BC as it is a common cancer and heavily researched. Did you see in Michigan how they sentenced that oncologist to 125 years in jail for hurting and killing over 500 people. He gave outrageous doses, made up cancers, inappropriate drugs and it wasn't until another doctor turned him in that anyone knew. He bullied his patients into taking chemo they didn't need and made millions. I am not suggesting that all oncologists are this way. Mine is very nice but he has his pet opinions and stubbornly sticks to them at my expense. If those opinions were based on science I might accept them, but they aren't.

Spookiesmom

Frey-you're in the Keys? How come I didn't know that? I always let Spookie around me during chemo. No banishment at all. The only time that sort of happened was during testing, had 2 radioactive tests, they said to stay away from babies and pets. We also adopted Kris during chemo.

I've been here 31 years, I always remember a Crabby Bills. In the early days, there were 3-4 restaurants here. They had their own boats to catch the fish to supply them. Then Bill died, and the kids took over. Lots of infighting, now the only one open is in IRB. FUNKY decor, but the menu looks the same.

MarlanaB

Sas--give a delirious insomniac a break! I'm rambling from a steroid induced psychotic break from sleep. But I would like to check Chevy's cowboys for any fuzzy-caterpillar-like growths.

And I've always said that when I retire from law enforcement and marijuana is legal in California, I'm going to open a bakery called The Hemp Cafe (THC, get it?!? I'm so clever!). And notice the clever use of a new paragraph to prevent any weird contexts involving Cowboys, fuzzy caterpillars and marijuana bakeries? I'm on a roll. But not a marijuana brownie. Since I'm now having the wheat issues, I'm going to incorporate the gluten-free fad and make a killing! My mother recently got a medical marijuana card and got some organic pharmaceutical grade ganja from my nephew that has a license to grow in AZ. My dad made some butter in the crock pot (no pun intended) with a half an ounce and a pound of butter that is so strong, a tablespoon knocked my mom into a weed induced sleep-coma for 8 hours.

I've only read the first two pages of the Cure for Stupid and I've reached the conclusion that if I ate everything suggested, including the banana from the stupid FB game, that I would need the coffee enema to combat the effects of cottage cheese and bananas and cover up the stinky pee. And I thought the tin hats were to keep the aliens from reading your thoughts?

MarlanaB

Rose--I can read your frustration and you are completely justified. But take a little comfort in knowing that you are educating some us Newbies in what to look for and what to fight for and even if you don't see standards of care in your time, you have passed the torch.

sas-schatzi

Rosie, every word you've written is so terribly true. The public is lead to believe that ASCO guidelines are the standard of care. If someone took your words and followed all the breadcrumbs and wrote an expose' of the reality, what would happen?. I don't mind their discretion when it benefits us, but when by denial that has such consequences, it's not right. Can't think of any other area of not only medicine, but of any type of work that has such uncontrolled power. Well, government.............

sas-schatzi

Marley, I was just enjoying the play on words out of context. It's like the strange stuff I hear with the hearing loss. Sometimes it's so funny and they're is no way it could be made up b/c it's so bizarre. like" We all stand up and fart" What was really said was "Any fireman respond". Who can make that up? When I'm straight remind me about the reflux.

Frechfrye, not sure on the time thing with the furbabe. I know what it was with RAI 131. Whatever they told me with RAI, I lengthened it allot. Spookie, just told me that at Moffitt a lady had her RAI given to her by a staff in Hazmat suits. Mine wasn't given that way.

Jazzygirl

Sassy- contract in progress. Been working on it with them this week. They said they are "revamping their subcontract" when I checked in on tuesday and then they asked for more info yesterday. So by poking them some more, I am moving them. It is in everyone's best interest we get this done so when the projects come (any time now), we are ready to go. I am pro-active and folks here are like "whatever."

MarlanaB

Sas--I knew you were goofing. I'm in my usual haven't slept so I'm way silly mood!

PattyPeppermint

fry - never heard anything about keeping our pets away during chemo ,hmmm HSS anyone else ?

PattyPeppermint

SAS - when you started this thread did you think it would one day have over 26,000 comments. Wow. Can't even begin to guess how many people made it thru treatments and it's horrible side effects and came out on the other side because they stayed sane by joining or lurking on this thread. I wonder how many people's lives you have touched and changed with your infinite wisdom. So very happy to have found you. Love ya.

sas-schatzi

Patty, way too much credit... just trying to stay sane. When I started it they're was no where to go in the middle of the night. They're were something like 14 pages in the first 36 hours. Certainly filled a hole. Sometimes they're was no one here. Those posts sounded like--- Well, I'll talk to myself for awhile. i'd wander on. That's when I got to meet the Southlanders. Chrissy, Alyson, Thatslife.

They're were times though that someone would come and we're distressed. Can't leave someone distressed in the middle of the night. I fell off posting here when I started sleeping better. Came back full time when I was being stalked. Figured my thread. My original topic box rule was no bullying and play nice. Mods kept the stalkers from coming here by threat of permanent ban.

I feel this is a very special family or tribe. Like the feelings I have for Thanksgiving. Great place to be and talk, wish we could share the food. LOL I just sent you food. See it is like Thanksgiving!. I've been privileged to have broken bread with Phyllis, Spookie, Chevy, and Blondie. Soon Loverly.

I'm the one that feels blessed that each chooses to be here, miss them when they leave, and the door is never closed.

Jazzygirl

All good on the 6 month mammo and ultrasound. I am celebrating with a root beer float at DQ😊

Spookiesmom

Yay Jazzy!!!!

Has anybody heard from Blondie? Hope we didn't wear her out and she is having fun.

Chevyboy

NO! I say No, those cowboys and farmers are for me to keep.... They said they didn't want to go no-where..... Just stay with ME! You know, we go on hay-rides, and to the saloons, and dance all night! We smoke and drink and even CUSS! Because we CAN!

You know, ONE time when our Husbands were hunting for about 4 days, me and some gal-friends went out dancin' to this fun bar.... Must have been in the 80's.... So we danced with these guys, and they sat at our table.... Well, we all had a few drinks, and they said, "I am the Pilot, and we are on our way to Las Vegas.... You want to go with us?" OMG I thought all my dreams had come TRUE! I mean to take off like that??? I asked?

I said "But I don't have any clothes with me!" And he said "I'll buy you some more when we get there!" Now DAMN! I mean HOW many women would turn that down? I ask! But I didn't have enough to drink to just throw caution to the wind, not to mention 30 years of marriage, so I declined his more than generous offer....! DAMN, I say again!!!

So we just danced, and laughed and had the BEST time ever.... NO, I didn't leave with him.... But I still smile when I think of that....GEEZ!

So what were we talking about? I COULD have gone for maybe 2 days.... WTH was I thinking? I am sooooooo chicken........ I deserve a medal.

PattyPeppermint

chevy. - great flashback. What do you get when you mix a pilot , a cowboy, and a hot married woman of 30 years ??????

Jazzy. - whoot whoot ! Doing a happy dance for you right now

SAS - I don't give you enough credit. I like the special family or tribe feeling. Wish we all could break bread together. Would be so much fun.

Spookiesmom

cell phone or camera to record the moment!!!

susan3

never heard couldn't be by pets or anything during chemo...my whole family would be in trouble. I am a couple a months away from 4 straight years on it. Poor family if that's true . I am not going to tell them shhhhhhhh


Pattt p...hubby pedals his bike. I think he and his friends are nuts. I like to ride for 20 miles.....not 80 to 100 a day. Nope...not for me. I stay home and he goes.


But I did put in 50 miles this week between walking and biking. This chemo I have been on I am handling well. Took awhile for me to recover from the taxoteredrug I was on last time, but I finally got back in gear and I am out having a blast again. Next week treatment, so it will be mostly nappy days...that's when I fall behind here.


When I see my onc I think I am going to kiss him. He is a great patient advocate. I wish you all had someone like that who listens so well and really cares.

Love that avocado . Never knew they could look like that. I do love them
Have a great evening all

PattyPeppermint

i would bring wine of course