Not Buying Into It

Lowrider- Great post, a HARLEY?? You go girl!!!!!!!!!!

Lowrider -  Like I'm sure everyone else would say ... I'd rather not be in this "breast cancer club", ;-), but your post sure lets me know that this is a club with some mighty strong women!

Heck, I was such a sissy that I felt like I needed to delete "my story" after a few folks posted they were ready for this thread to go away. 

I also wish you weren't in this "club" but I just wanted to let you know I think you are an inspiration!  Thank you!

I hope you understand what I'm trying to say.  I worry a lot that I'm going to say the wrong thing around here.

Pompeed,  I am glad to see from your latter post that you have met with your doctors and are at least considering options.  Your original post was very disturbing and certainly stirred things up.  When I read it I thought , boy this women certainly does have an attitude and I can understand why you got a lot of negative feedback.  Sure there are side effects...there are side effects with everything....and it is not a fun thing to have to go through, but it is not an automatic death sentence unless of course one chooses to do nothing .  And I don't think any of us on this board is deluding themself by thinking there is a cure.  If you have read anything about cancer at all, you know that there is no cure.  If found and treated early enough you can be NED or in remission or stable, but no one is actually cured because there is no cure.  And sometimes even though we have treatment, the cancer comes back as it did in my case.  I had my mastectomy, no nodes were involved, had immediate reconstruction, went for all my checkups and did what I was told to do and 8 years later found out it had recurred in my sternum, lung and liver....bingo, Stage lV.  Talk about depressing....after reading about Stage lV and the prognosis, I thought it was curtains for me.  But I did not give up and I never ever thought about not having treatments because I knew I wanted to live.  Believe it or not, I have never been depressed.....oh I did go though a period this year where I actually talked to a shrink and she had me trying antidepressants which I did not like at all so stopped, but it oddly enough had nothing to do with being Stage lV or cancer....well,maybe in a way it did since I got married so I would have insurance and really would much rather be single and have a hard time dealing with my husband and some of his habits.  So I guess cancer was an indirect cause of my unhappiness since if I didn't have it I would not have married for insurance, but as usual I am getting off the beaten path here.  I do not think I live anything other than a normal life....it's not even a new normal as a lot of women talk about....cancer has really not kept me from doing anything.  I have worked the entire time, I still travel and have a good time, I still work in my yard and enjoy cooking and decorating and go places with my friends and enjoy life.  There were times when I had aches and pains and times when I would come home from work and just fall into bed, but this may have happened with or without cancer since I am not exactly a spring chicken.  However a lot of my coworkers marvel at all I do in my time off and they will always ask Well, what are you off to do this weekend.  I am not a person who likes to sit around and do nothing and I made my mind up a long time ago, cancer was not going to take over my life.  It is part of my life, but it is not my life.  I miss my estrogen, I don't like having legs that look like road maps ( I am susceptible to blood clots and need to be anticoagulated for life) and am sure not all these wrinkles are just from sunbathing when I was young, my toes feel like sausages and my feet hurt due to neuropathy and I sometimes wonder if my fingernails are ever going to get back to normal, not to mention the fact I have to pluck out eyelashes every so often since some of them now grow inward after they came back, but at least the watering eyes are gone after I had the surgery to re-establish drainage after the chemo caused my tear ducts to close off.  I could go on and on, but I really don't mean this to sound like complaining, I am just stating facts and many, most of, these side effects go away.  You know that saying Shit happens....Well, that certainly is the truth.  However, the fact is, I am still here.  It has been 12 1/2 years since I was diagnosed Stage lV and I am very thankful they have been good years and I still love life and even though at one point the chemo SEs got so bad I quit that particular one, I went for another opinion and tried some other options because I was not about to say Ok, I am ready to give up and die becasue I wasn't and I am still not at that point.  I just got back from a vacation and am off this coming weekend to Florida with some of my girlfriends and am looking forward to meeting a friend I have made from these boards.  I am living, not dying, I am living with cancer.  None of us are saying it has been easy or something we have enjoyed, regardless of Stage.  Cancer is cancer and it's a scary thing and I can understand how hard it was to watch your father suffer and die.  I watched my mother on a respirator for 6 weeks and it was not something I would wish on anyone nor something I would want to go through myself.  Many strides have been made and treatments are much better than they used to be.  Yes, I gained a lot of weight on tamoxifen, but I also cried when my onco told me it was no longer working for me and yes, I thought reconstruction was a PIA.....mainly because it was an inconvenience going to get the expanders filled....same way with treatments.   I go every week for chemo and it doesn't make me feel sick or ill and I am happy to say this one has not made my hair come out and really doesn't cause fatigue....am not happy with constipation, but that can be dealt with.  The main thing about treatments is that they take up time and I find that the older I get the more precious time is and the faster it goes.  But my grandmother felt the same way, always told me time went by too quickly and she didn't even have cancer.  One thing cancer has done for me is made me appreciate things I used to take for granted...it might not do this for everyone, but it has for me.  I did not ask for cancer, I did not welcome cancer, but I have it and I am stuck with it so I am making the most out of the life I am still fortunate enough to have.   You are right a male surgeon does not know what it is like to live without breasts and he probably is not giving a lot of thought to that, he is thinking that he is doing his job by trying to save your life.  And so far as repulsing a man....if having or not having breasts, reconstuction or not, is going to affect the way he feels about you, Well, personally I would not want anything to do with that man.  I was 40 when I had my mastectomy and still dating.  I used to feel compelled to tell anyone I started getting serious with that there was something they should know about me before we got too involved....I think they always breathed a sigh of relief when I told them I had gone through reconstuction because of a mastectomy and did not have a matched pair.....they were thinking more along the lines that I had killed my last boyfriend or was HIV positive or something.  But you know what it never made one bit of difference and I certainly don't think I even repulsed anyone.  It used to be a hangup of mine, not anyone else's,   Clothes don't make the man, and breasts do not make the woman.

We come to this board to share our experiences and for comfort and for understanding from others who have been though similar experiences.  And when you came on here and started talking about how we had false hope and how our treatments are pointless and that we are pretty much not facing the truth and just wasting our time with surgery and treatments because we are destroying quality of life and are going to die anyway.  Well, can you blame people for getting upset by this and not welcoming you with open arms?! 

The bickering and pettiness that goes on with some of these threads never ceases to amaze me.  I don't enter in because often the threads are political or about something I know nothing about and I don't feel like I should enter into something if I don't know what I am talking about.  But sometimes I read them daily anyway and it's sort of like entertainment because the arguing is almost laughable and I think Wow, this is a support thread.  However, this one I do know something about and I felt like I needed to add my 2 cents.  What you do is up to you....no one here is telling you what you should or should not do....what works for one of us, does not necessarily work for someone else....how we react to a treatment does not mean the next person is going to have the same SEs....we are all different and have different opinions.  That is what makes life so interesting.  Another saying Judge not, lest ye be judged.....or something along those lines.  No one is trying to tell you what to do so you also should not be telling us what we should be doing and that we are guilty of having false hope.  There is nothing false about our hope. It is real.  It is what keeps us going.  I myself feel I have been very fortunate and know I have not experience half the horrible side effects many others have.....I have been dealing this for a long time, but consider myself lucky in that it has not been all that bad and it sure beats the alternative.  We do have hope and that is why we are here.  I think the women who post on here are some of strongest bravest women I have even had the privilege of being associated with and when I need advice or support, this is the first place I turn to. 

As I said before I am glad to see that you are considering options.  You are new to this....you have every right to be angry and bitter.  Having breast cancer is a scary thing and perhaps the treatments seem barbaric to you, but don't lash out and criticize others for doing all they can to stay alive.  Not everyone is going to be Stage lV, but regardless of Stage, we are all in the same boat and it's swim or sink.  I choose to swim.

I am not trying to be mean spirited or trying to beat you up, I am just telling you how I feel.  We are all entitled to opions and choices and yes, hope.    I wish you nothing, but the best and think if you give the boards a chance, you will get a lot of good information and make some true friends on here.   Marybe

Agreed -- it is a hard process to make all these decisions - it can be lonely since ultimately it is just about you, no one else.  Take the time to mull over all the options and you will come up with the best one for you.  What is good for me, or whoever could be a crappy option for you, or vice versa.  It can be overwhelming but take your time and don't let anyone push you into anything.  I don't know if you've looked already, but maybe a browse of the forum that is dedicated to the type of BC you have might help assess the options.  Wishing you all the best,

Elizabeth

xox

((((((((((((((((((((((Group hug))))))))))))))))))))))))))).

This site has kept me sane thru all my ups and downs. I care about each of you with all my heart.

Carolyn...when Arimidex failed me, I had just gotten a refill just before it went generic...I sent it off to someone on here without insurance - thanks for sharing that - it made me feel like I could and it wasn't a big 'secret'. 

Thats what the spirit of these boards are like...

Pompeed - it is your decision and we can only share of ourselves to help you, guide you to be able to make the most informed and best decision for you - not one of us is the same or has had the exact same experience - this beast has as many faces as the number of people it picks - the fact that there is no 'one for all' treatment or procedure surely has a great deal to do with why we have no cure - it is not the same disease all the time in every person.

Oh, and on the subject of shoes...I don't think many of us walk in the same pair day after day so even within our own selves, we are not the same every day either.

This site has really been my sanity throughout this past year.  I am a rah-rah (fomer cheerleader) but don't let my light-hearted posts lead you to believe I don't have bad days - I do and I get really crabby when I try to do something and can't.  Sure, I give it a try - how else will I know if I can do it or not - sometimes I pay dearly for it - on the couch for a couple days (I don't usually let people know that part after the ride on my bike), unable to move but I did it!  Learning my limitations was the hardest part.  When I am feeling really good is when it is most annoying - I almost surely will confront something I can't do anymore and then I am pissed but...it passes. 

I wish you would believe me when I say you will be able to cope, you will reach a point of acceptance - but, I didn't believe that a little over a year ago either so why should I expect you to? I do now and it really was these wonderful folks here that got me through the process and helped me understand the treatments, the side effects, the road I was on and some real good guidance on how to navigate it and where to get help if I needed it.  It was my decision and only I could make it - but there is nothing wrong with asking for a little help - something I was most definately NOT one to do. 

The beginning of this journey is the hardest part - not that any of it is easy.  Trust that you will find the groove for you and once you start rolling with it - you will be of tremendous help to someone else new to this journey...

Ditto Mazy...((((group hug))))

LowRider

Cancer drugs are allowed to be shared - it not like it is put in the public eye but it is permitted.  I think I posted something like 'Arimidex failed, moving to Faslodex - just had my prescription filled - PM me' and the gal did.  I sent them off but never heard anything after that.  I know they were received but it was kinda sad that there was no thank you.  I am so sorry that happened to you - people should never jerk people around like that - geez, don't we have enough to deal with? 

Hope things are looking up a bit for you!

Hugs...LowRider

PS...it is rather openly shared on the bcmets.org site

I sent med to a very nice girl who gave me a very nice thank you.there are people who really need it ad do appreciate it.I was a little nervous at first but then i said hey you know what LET THEM THRO ME IN JAIL.LET THEM DEAL WITH ME.

As someone who has been through 12 surgeries in 2 years, plus chemo and radiation and now Femara ... I can honestly say that yes, it's been time consuming but BC treatment is not 24/7. I recover quickly from surgeries, so I may spend a day or two feeling badly but by day 3 I'm functioning pretty well. It's not all or nothing.

All I know is that if it does come back, I want to be at peace with knowing I've done all I can. And as far as the reconstruction, I want to get back to as close to before BC as I can. That will go a long way to helping me NOT have to think of BC every day. 

Pompeed - Your doing the best thing for yourself...VENTING, getting it all out, anger, resentment, fear, you name it...write, write and write some more...don't let it kill you inside...get it off your chest....we'll listen and support you no matter what!!! We all just want to be heard and recognized in one way or another....compassion, humor, insight, intuition, love, creativeness, hope and caring for another human being....we care, we're listening.....

I'm a PA gal too originally, Montgomery County.....in IL now...

I can say I have felt every word you listed, these are stages you go through, transitions...it comes and goes...once acceptance is achieved, then you'll have internal peace...trust me...

Stephanie, as much as I didn't want to go through the flap surgery, I can tell you that it hasn't been the least bit of a problem except for causing some very minor lymphedema. I was back doing things for myself within a week.

About a week ago, I cried happy tears because I was filled with a ton of energy and was able to help a friend with a big Halloween party. No signs of weakness or energy sags. I enjoyed myself, ate what I wanted and even had a few cocktails. It was like the last two years hadn't happened. Pretty terrific feeling!

 I have read all the posts and Pompeed, you are clearly an intelligent lady with some very good points. I too watched my father die from cancer. Oddly enough, it was male breast cancer in the same breast with the same mets as me. I was his caregiver for five years, and I was very angry with him for never questioning the doctors, never questioning the treatments, and submitting to everything without complaint. Watching it happen infuriated me almost as much as his cancer. Now, twelve years later, I find myself in the same position he was in and I'm scared as hell. The last 10 months have been a blur, and like my father I have submitted to everything my oncologist has suggested. Not without question, mind you, but always with an eye on the bigger enemy. It really is a question of what you think the bigger enemy is. Although I made a rather dramatic entrance into stage 4 and was nearly paralyzed, I am new to this game and don't plan on quitting anytime soon. I sympathize with all you have been through before your cancer diagnosis, and I respect your feelings. We are all just trying to make sense of this madness, and find the strength to endure whatever lies ahead... no matter the path we choose. I wish you the very best.    

You do all know that:

"When I saw Dr. Weiss, she suggested that I visit this site." from Pompeed's post. 

She is ranting against the entire heart of this board - I do take offense to that - we have all offered our own personal experiences to aide her in making a decision.  Some have been more touchy about it than others - the newly joined have decided to 'laugh it off' like our lives are meaningless, the mid stagers have opened their lives to this woman to show that you can get through this and were rebuffed, and we that are really fighting for every day of life have tried to show her that there IS living with this crap and to give up at an early stage - which we don't know what that is yet - would be a waste of a life...

I have already been there and done that and watched my dad die while I was doing chemo - that was 12 years ago.  I have mets now but I didn't lay down and let it take me back then, I am surely not going to now.  I had a pretty normal 10 years of really living.  How can this gal just throw life away?  If I could take what she is tossing out - I would - I know what is on the other end of those surgeries and treatments - life for a good while with no evidence of disease...and an end to treatment. 

While I just may end up NED (more likely stable will be the best outcome) - I will be treating for the rest of my life or until I choose to stop.

I have tried to approach this positively - it just isn't right to take Dr. Weiss's advice and then come on this place and belittle everything about it.