INSOMNIACS place to talk in the wee hours

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.

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?

This one made me laugh so hard, I got teary!

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)))))

Not everybody "got"his name. It and he was a lot of fun!!!!

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!!!!

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!

For those who may have known Deliurim Pie from other threads, she got her wings tonight. She was 33.

DAMN Cancer.

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))))

Patty Peppermint, I hope you are feeling so much better, and I hope the room service was great! Stay warm, and get better soon.

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.

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.

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!

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!

Rose- it seems like your onc answered the question about why different people with cancer given different answers about treatment vs. the REAL question you had, which was "why do you all give me a different answer about MY cancer?"

I saw an MO about eight years ago related to another issue and he said something to me which had remained with me for years. His comment to me around the issue we were looking at (the possibility of a gyn cancer) was this "we do our best to take the data we have to provide you with an opinion about what is going on with you and the best course of action to take. You need to know medicine is not an exact perfect science." He hit the nail on the head for me as I am trained as a scientist and things can be very black or white to me most days. But medicine is filled with those grey areas......

I have seen gyns, MOs, ROs and other specialists for "opinions" around different issues related to possible cancer or diagnosed bc that have gone on with me. Because I know these docs are going to offer you WHAT they know based on their education, research, experience with other patients. I think cancer treatment is a very trial and error type of thing. Because cancer is not one disease, but many diseases. I think if one thing worked, we would all be getting that one thing and get cured.

I just don't expect to get the same answer from my docs, even those in the same specialty, but am always listening to what they say that feels right for me. At the end of the day, they don't have to go through the treatments, live with the side effects, and oh yes, pay for any of this stuff, WE DO!

I hear your concerns about the drugs we are taking too that can damage our hearts and our bodies in other ways. I have read too many stories about women who have ended up with congestive heart failure from chemo, women who have blood sugar issues after cancer treatment (I have), and then there is the osteoporosis from the AIs issue (my current worry). Is a heart attack, diabetes, or a broken hip a good outcome from cancer treatment? I think no. We all have to ask the risks vs. benefits of these treatments and to say "hey, this may not be on the list of SEs, but I have it going on!" My MO actually encourages that and says every patient should be asking a lot of questions.

So I guess I wanted to say, just remember that doctors give you their opinion vs. it being the god given truth about anything. You have to decide what is right for you. I have made it clear to my docs I am more concerned about quality of life than living to be 90 years old.