INSOMNIACS place to talk in the wee hours
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My DD earned her bachelor degree in music performance. Mozart is her main man!!!! So there was a LOT of classical music going on. Her principle instrument is flute, and she is a Grade 2 bagpiper.
She now has her M MEd in music, and Mozart is still her main fav.
My Aussie that I talked about earlier, his registered name was Wolfgang Amadoggus. Call name Vulfie
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SAS I tried to call, call me back! I forget where you are, lunch at Cracker Barrel tomorrow? Close to Moffitt!!!! Unless DS has a place on Dale Mabry?
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Just wanted to check in and send love/support to all of you. I'm fighting the blues (no apparent reason) and trying not to share them, so trying to keep quiet. Which is not easy for me.
Chevyboy, your photo above was VERY therapeutic - thank you!
MammaRay - what can I say? My heart is filled with prayers and hugs and hope for you but it's so inadequate.
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Magdalene, I've been on arimidex for 3 years with very minimal symptoms. I have some tendonitis in my ankle that I'm blaming on the lack of estrogen, but that would be the same with any AI.
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Hopeful- sorry you are are feeling down. The blues sometimes have no rhyme or reason, they show up sometimes much later after things have been going on too. We are not always able to be strong forever. I hope you feel better and thanks for letting us know what is going on and if we can help in any way?
You are on the AIs too and it does not help our moods.
Mags- my doctors had me take a break for three weeks after rads and before I started the AIs. They know you need to rest and heal between these types of treatments. I hope the AIs are easier on you since chemo and rads have been tough. Okay, what part of any of this is not tough?
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This one made me laugh so hard, I got teary!
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Spookie. leaving her about 4 PM. I love cracker barrel, but I back to needing a soft seat. Since I'm hoping for a lunch and a couple hours of yakking. I can't find your phone number and I packed my cell. Will call you tonight.
Well isn't that fun 3 music fans finding each other. Special.
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Jazz- hilarious.. layered snow in New England and 50 shades of grey in a tour bus. perfect.
Spook- I love your dogs name! That's great. Have fun with Sassy.. hope you find a place to gab and all the news is good.
Hopeful -the blues are no fun. I am sorry. ((((Hugs)))))
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Imperial glass --candlewick--------------yesterdays thrift
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Not everybody "got"his name. It and he was a lot of fun!!!!
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Thanks you guys for your kindness. I really appreciate it.
Love the painting - and your candlewick find, Sheila.
Back to trying to focus on work...
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Thank you all for the wonderful welcome!
I've been reading the posts on the website since I was diagnosed in 2012 but finally needed to join because, like all of us, I need a community that understands what I'm going through from their personal experience. I wish I was so positive as I sound:) alas, that was true during the first treatments - I was the girl who was smiling during the chemos, shaved my head before hair fell out, and told my MO about the taxol that I could take this for the rest of my life if needed. After surgery they found cancer cells in the lymphatics of the skin so during radiation they literally burned my skin to get rid of it (I was on opioids for the pain) and I took xeloda for another year and a half to prevent recurrence. I was doing great mentally and physically. Then in September 2014 they found cancer cells in pericardial fluid and pleural fluid, so I'm now stage IV. I have many good days, and many bad days, but I'm trying to keep my eyes on the prize - every day that I'm still around and doing OK it's another day that I can be with my son (he's seven) who needs his mom, so I'm trying really hard.
I have found enormous support and encouragement in this community and I hope to be able to give back.
Btw - I love dogs and me and my DH used to watch all the dogs shows!!! So finally after my cancer diagnosis we got our own maltipoo (I'm allergic to hair) who is, of course:) a cutie. He and my son are best buddies
His biggest fan and the one that spoils him the most ? My hubby - who didn't even want a dog!!!!0 -
Ibgal- I am sorry you have had such a rough road. Sorry you ended up in Stage IV too. Glad you are here with us though. Hopefully we can help you along your journey and be a source of kindness and compassion to you.
No one understands this stuff unless you go through it. I always say most people I did tell acted like I had the flu and then got over it. Not quite that simple folks......
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Oh good! You came back! Nice to see you again Gal !! You have a 7 year old? Cammi comes around every once in awhile.... We really tease each other, for no reason, other than we CAN.... Ha! But she is living with her Daughter, and her little Grand-son who loves her to pieces! Little boys are just the BEST!
I had... well I mean I still do, 2 little Grand-sons, who are 29 and about 27.... but the years I was with them watching them grow up, were just the most treasured years of my life! I still talk to them every couple weeks.... but we would LOVE to hear about your Son..... What's that kids name? And your dog's name?
Sorry you have been on such a long road..... but maybe we can help? We'll try to answer your questions, and listen to you! But we'll occasionally make you laugh, and that's more important!
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Welcome lbgal!
Rose, we had Snoopy up til after my dad passed away when I was three. He had been part of the family since before I had come along and by the time we had to put him to sleep not long after my dad's passing, he was pretty old and getting pretty sick. He was one of the gentlest dogs I've ever been around.
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For those who may have known Deliurim Pie from other threads, she got her wings tonight. She was 33.
DAMN Cancer.
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hi ladies. I think y'all are slowing down on posts. Everyone frozen ? Only 3 pages behind , that's unusual.
Oh yeah talking about funny names and initials , in junior high we had a pe teacher named Richard ( went by dick ) Harry long. So very funny. He got fired for inappropriate behavior with the young boys. Couldn't understand a parent giving that name. Wish I could take noted to respond to all but unfortunately Iam in the hospital AGAIN since yesterday with raging uti. Uncontrollable vomiting Major dehydrated. Ugh. Feeling much better tonight. Amazing what some fluids will do for feeling better.
So hugs to all esp mammaray.
Hootie hoo
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Raro- Rebecca got her wings yesterday. Fly free! She was so miserable the last couple of months. I feel badly for her kids but sweet release for Raro. Cancer sucks.
Patty I just saw your post. Having a bad UTI just sucks. Being dehydrated sucks. So I am glad you are in getting fluids and antibiotics. Hope you feel better soon. This has been some year for you. (((hugs))))
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Dmn cancer.
lbgal, welcome to the most prolific, varied, kind and supportive anywhere on the web - and probably in real life, too. I hope we can add something good to your life, although with a seven year old son, a dog and a husband I'm not sure where you'd find room...but then, we are open 24-hours...0 -
Patty Peppermint, I hope you are feeling so much better, and I hope the room service was great! Stay warm, and get better soon.
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MammaRay, I hope you are comfortable tonight, and sleeping! Everyone here wants the best for you, and I hope you visit here often. There is so much love and support. And hopefully the information you seek will be found among the most amazing women here on the boards.
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I am sorry to hear about the two women who lost their battle with cancer the past few days. One was very young and the other (or perhaps both) with young children.
May our sisters who have left us rest in peace on the other side now. Peace to all of you who are feeling this deep loss too.
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Ibgal, Welcome......jump in anytime...
MOSTLY MOM, woo HOO ! Good to see YA, great photo. Sounds like you & Smaarty would make quite the sewing circle.
PattyP...... Sorry they wrangled you back in the hospital, but glad you are getting the fluids you need. Hope you can bust out soon. Rest for now....
MammaRay, lots to process. Hugs friend...
Sas, I love that pattern. I have been looking for some more of these....
I have 6-7 which is plenty, but they are so versatile. They are sherbet cups.
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I need to bounce this off you all. I saw my local onc today. I asked him why none of the oncologists I have seen seem to agree on a damn thing. They are similar in that all dismiss every side effect and any damage done by chemo, radiation or drugs as from another cause or issue... or a sweeping dismissal of "all drugs have side effects can't be helped." Still one doc does tumor markers and most don't, some do labs - some not, some scan- some no scans. Most all expect you to prove progression, pain or change with magic and no matter what you say- "you look good!"
Anyway my onc said every cancer is different and requires a different approach to the circumstances, pathology and physiology of the cancer and the host (you). You don't want a cookbook recipe approach of first this, then that, then ... no deviation- right? I can appreciate this, except that I am the same patient with the same pathology of ILC etc. So would it not stand to reason if there were accepted standards of care to attack ILC receptor positive ER/PR Her2 Neg- that what I get told would be somewhat similar since the patient is exactly the SAME in every visit? Why is there such enormous variation in what I am told and am expected to believe? I mean they just have no credibility in my eyes because there is zero agreement. Makes me wonder how much of this is just made up, just a lot of BS. It would be rather easy to just prescribe anything on the list and suffer through the side effects for pretty much no gain and a lot of suffering. Back to the Emperor's New Clothes... I don't see it.
I especially wonder about their motives when after 5 months of afinitor (which did repair my bone marrow and improved my counts to normal) also caused enormous edema in my ankles and shins, arrythmias, sudden fast heart rate changes and drops in BP- all of which were dismissed. Here take lasix and carry on. I referred myself to a cardiologist who tells me my heart is the best it's ever been! Really? Then when I quit the afinitor, ditch their drugs I improve immeasurably? You are just as dead from heart issues as from cancer. No bargain to survive the cancer and croak of heart problems. So their utter lack of concern, dismissal of side effects and encouragement to carry on only makes me wonder just what is on the agenda? I don't trust oncologists. They can kill you with these drugs just as easily as help you. The reality is no matter what you take eventually it will stop working - all of it.
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Sick of the freezing cold! Supposed to see -24 tommorrow morning! May see 40 by Sunday, heck I'll even take 20s and 30s at this point!
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Morning gals! I just hate to hear that we have lost some of our friends.... Every night, and every morning, I just thank God that I got another day ...... I mean at MY age, it's all pretty iffy! Shut UP Cammi..... You too Spookie! You know what I mean....
And Rosie, all that you said is so true.... It's like WE think SOMEone would KNOW exactly what is wrong with us! And we get so frustrated when we TELL them, and like with ME, they look things up in a big book, (in front of me) when I ask them "Could Tamoxifen make me lose my hearing???" And they say," well, it doesn't say that here".... I mean HERE in that book that was written 50 years ago.
And we research ourselves, and ask questions to anyone that will listen, and then we continue banging our heads on the wall, and finally we find a clue, then an answer, then maybe SOMEone will listen and say, yes, that is possible.... But we are ALL so different.... different cancer types, sizes, our genes are all different, the grades are all different... along with the stages.... so that probably adds to the quandry all those guys are in.
They try to go along with protocol, with what they have learned, but they can't help all of us... Maybe someone else will.... but it is their patients who are out there floundering and suffering, and trying to hang onto "life"........
Sometimes I really DO make sense.... but it's hard.... And besides THAT, we are in for a MAJOR snowstorm Saturday & Sunday! Epic proportions they are saying! Can you IMMAGINE? My flower seeds, and herb packets, and vegetable packets are just WAITING to be planted in my planters!
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I think when we think about it, there was maybe a time, or we are going through something now, which makes us drop to our knees and feel so utterly hopeless...
But like my friend Jackie says, "give yourself 10 minutes.... then if you can get through that, give yourself another 10"..... If we can just hold on, work throuogh the worst part of every day, we can maybe come out on the other side, stronger than when we fell down....
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Chevy, you said it and then some. I thinkl our docs rely more on their book knowledge than listening to us, their patients!
Next storm we are to get is this weekend. Supposed to start as snow, change to freezing rain or plain rain and then back to snow!
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I must say I like my onc. I can fight with him about stuff and he will listen. Admits he doesnt know everything, and is very much a patient advocate. If I can't live and have some fun on a particular treatment, he cuts it back or takes me off and puts me on something else. We both know we are buying time, and we both agree it has to be quality time or we are done with this stuff. It will be 14 years for me since first surgery for all this in 3 weeks. 14 years of cancer drugs. 14 years of pretty good sometimes really great quality of life....actually mostly great....don't know why my body tolerates this stuff when others can't fare so well.. I wish they could figure that out. Maybe they do have a fact sheet in that, I don't know. My onc just says ...don't change anything you are doing....
Was at treatment yesterday and I told nurse I have been sleeping sooooo good lately...was interested in my blood count to see if hemp dropped...she said, of course all are patients are anemic ...ha my counts were perfect. The only time I was anemic is when I had some internal bleeding....nothing to do with cancer....so why don't I get anemic, yes, I will add, on all this stuff for all these years.....???? I will gladly take it, but I wish they old figure it out so they could help everyone else in treatment.
Was suppose to go visit my daughter in Michigan today for 5 days. That trip around the lake fom chicago to grand rapids is hazardous today. White outs till 7 tonight. Gotta wait till tomorrow. It's very cold here but looks beautiful , can't believe 1 hour away they can't see their hands in front of their face. Lake effect snow.ugggggggg. Well, it's not as bad as Boston. So sad for them.
Morning all
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