Not Buying Into It
Comments
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Stephanie:
Yeah, grad school. Once for three years for the first grad degree and then another year for the second. Four Chicago winters to get two grad degrees.
And if I had been smart, after the first three winters there to get the first one, I'd have found somewhere WARM to get the second.
What can I say? I was a glutton for punishment!
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What interesting women have come out of the woodwork! I'm so sorry, but I'm afraid many here and in the world in general cannot see beyond their own set of absolutes, seeming to find an open mind to be dangerous somehow. By being brutally honest in your anquish, you opened doors of fear, judgement, even heresy! Bravo! Personally, my beliefs might differ, but as someone once said, I will defend to the death your right to express them.
Perhaps I didn't read your words carefully enough. I didn't perceive any belittling. I perceived frustration of not being heard. I didn't see you proffering advice about what anyone else should do or believe.So much of what you said touched on the common expeirience of the newly diagnosed who must make tough decisions in a hurry under pressure. It made us all terrified and angry whether we admitted it or not.
I trust your decisions will be for the right reasons for you as an individual. I hope the few hostile attacks don't push you away from calm, careful consideration.You only get one chance and don't want to be second-guessing a few months down the line. I, BTW, chose to skip chemo for many of the same reasons you are considering and have been quite comfortable with that.
May the rest of your journey be a bit less rocky.
Judie
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Thanks, Judie --
I've driven nearly 1300 miles since last Saturday. That's a lot of hours alone in the pilot seat of a car in which to think and weigh and weigh and think and play out the various scenarios at 70 mph.
In hopes of achieving exactly what you advise: avoid, as much as possible, an "oh, sh*t!" self-flagellation scene a couple months down the road.
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Pompeed- I hope you dont leave this forum, there is still so much to learn and who knows you may help other woman down the road with this horrible crappity disease.
Lowrider- Love you your new aviatar!
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Pompeed ... I've been following this discussion since you first posted. And I've had you on my mind. I'm sorry you got some bad PM's, it's happened to me before too! Water on a ducks butt.
I honestly don't think there is an elephant in the room. I can speak only for myself. Much like your life with your horses as your life saver in a stressful world .. so was my gardening. My gardening consisted of putting up fences, mowing my fields and doing hard, physical work. It saved me sanity as well your horses do yours.
My treatment started in March 3 1/2 years ago and ended in July. I was a mess. The most stressful time ever and I couldn't do my physical stuff to feel better. I had a lumpectomy and radiation. I have some residual pain at times on the lumpectomy side, but I'm back to doing all the stuff I used to do. It didn't take long to get my strength back up.
I didn't think about giving up my sanity saver that summer .. I only thought about getting my treatment started and finished. In total, I think I was affected by it for about 6 months, then I was back to my old ways.
Wishing you the best,
Bren
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It is not making anyone happy that you will be leaving this site - I wish you wouldn't as there is so much to be gained by truly looking at this from every aspect and not totally with your own so tightly held personal reasoning. Granted, it is your life and it is your decision and yours alone and an extremely difficult one and we all get that. I am sorry for the nasty grams - it happens and I only find it upsetting that making the blanket statement concerning this entire place isn't at all comforting - it is what you take from it but don't attack it - these boards have been the sanity for so many, myself included. Don't judge us all in one lump.
Just for one moment - open yourself up to considering some of stories of the lives that have been opened to you to look at, to see, to aide in understanding that short term pain for long term gain is not so bad. Pompeed...you aren't even staged yet - what if it is so early that it can be surgically removed with clean margins? I may have totally missed something - you talk about surgeries as if you had them and then you state that you have done nothing yet - I am confused.
If it is the case I just decribed - that is the closest to 'cured' as one can get and you will live a very normal and long healthy life without ever having to face a recurrence.
As you are in contact with Dr. Weiss, why not just wait until there is a conclusive determination before you commit yourself to the grave - it would be a horrid waste of a wonderful life and I am sure that there are many in your life that would much prefer to watch you grow old than to see such a young woman lying in a casket when it didn't have to be that way.
I indicated in a previous post that I was similarly attacked at my first joining of these boards - I didn't let it chase me away - this place wasn't here at my first encounter but it was my lifeline once I was dx'd with mets - it still is and likely will be for the duration. You have made some friends and as in the real world - not everybody likes everyone all the time - it is no different here. We all hear you about it being your life and no two lives are the same but it is all we have to offer you - ourselves - to share our stories, our experiences, what it was/is like 'in our shoes' in hopes that you may take something of it with you when thinking of what you could decide. Please don't just toss in the towel - perhaps you might find something on the alternative forum that might be more in line with your thinking. Since the medical community seems to have become your enemy - try talking with the natural girls - they will surely understand your feelings about the world of traditional medicine.
I honestly wish you the best - there is no happy wonderful world of breast cancer - it is awful, ugly, painful, demeaning, beastly...just nasty and it does more than affect the patient but each and every person in that patient's life - in some cases, there are those who find that it has opened their eyes to the value and joy of life but in no way is the disease 'joyful' - it sucks. And there is no 'right' thing to post here - no absolutes - only opinions and life examples and while there can be those that judge, it is usually in response to cyber-finger pointing - when one points a finger, the others are pointing back at themselves. You kinda did open yourself up for it with the very first post and I am not blaming you - it came from your feelings and your anger and we all have been there - especially in the beginning where we are most scared and don't understand why this has happened and the world sucks and so does everything in it. Like I said in a previous post to you - I wish you could believe me when I say that you will come out the other side but I didn't believe anyone either so I can't expect you to. Here I am - out the other side without the anger anymore - I know I have a terminal diagnosis and have reached a point of acceptance - please wait to make any decision until you have a confirmed diagnosis before electing to do nothing.
This is only my story, my life, my shoes - I offer it not for you to walk in my shoes or to pass judgement but simply to perhaps let you see a different outcome from the one you now envision for yourself. That's all. No advice, no judgement, no belittling - just a tool that you might be able to use in making your very own, personal determination as I had to make my own.
LowRider
PS - Thanks debbie - I tried to get the entire costume up but it looked so tiny so I just cut out my head...boy, that doesn't sound good...LOL
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LowwRider, As always a very good post. You are my inspiration.
pompeed, I've been reading this post over the last couple of weeks. I had really nothing to say since I am also early in this process. As you the frist time the BS didn't get the margins, so I had to have a second to "get the margins right". It was very hard to have to do that, but I did it, and am glad I did now.
I decided to chime in now, because I hate to see you leave because of a few people who are making you feel unwanted. We all come to this place looking to be accepted for who we are, and with our fears and concerns. Many of your questions were questions I had at the beginning of this process as well. In the end all we can do is decide what is right for us. IMO no one can totally understand where you are coming from, because no one else has had your experiences accept you.
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Don't run from the boards. remember you have 60,000 women here. Of course some won't be the ones with whom you want to associate. Just ignore them. Please also don't let your dad's dx and tx rule your decisions. What he went through is not the same. It really is different in the BC front and it really is even different from two years ago. You have to do what is best for you but realize that you only should make that decision when you are sure you have truly accurate info. I hope all goes well for you.
If you ride, you understand, sometimes you just have to kick on.
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Pompeed I hope you don't leave. If you do stay please block the people that are making you upset. So far I have only had to block one person but I will block more if and when the time comes.
As I mentioned before I respect what ever decision you choose to make.
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Thank you: Debbie, Bren, Flash & Lago.
Lowrider: Thanks for your long note and espeically reference to alternative treatment topic. I had not noticed that.
To clarify: first surgery didn't clear margins. Surgeon got the invasive out. But not the DCIS. No one knows how much of that is involved and won't know until there's more surgery. Of course, with cancer already in one breast, it's probably only a matter of time until a mammogram picks up invasive disease in the other one. Which is why it seems to me that "getting to the other side" of the needles and the time spent at appointments and the tests to arrive at a point of being "well" for years doesn't strike me as a realistic possibility. What I see ahead, if I allow myself to be too much influenced by the white coats, is a life in which the majority of my time and energy will be eaten up by procedures intended to not have cancer. But I already know damn well that I have cancer.
So that's the choice: spend the majoriy of the minutes between now and the date I die trying not to have cancer and the minority of my time living well. Or the opposite: spend the majority of my time living as well as I can for as long as I can and the minority of my time trying not to have cancer.
That reality is the elephant in the room. And my gut tells me that a whole lot of people ask themselves the same questions. In the privacy of their own minds if not aloud.
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Pompeed: I was dx in Jan. 2008 at age 54. Two lumpectomies did not get clear margins, so I chose a unilateral mastectomy with silicone implant recon. April - July - chemo every 3 weeks. Since my tumor was Her2+, I did an infusion of Herceptin every 3 weeks until April 2009. Even during that time, certainly the "majority of my time" was not occupied with cancer treatments. And since then, the majority of my time is certainly spent living well even though I have chosen to be in a clinical trial which requires more "white coat" time than I would be spending without participation.
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I guess the ? comes down to how badly do you want to live?? I was dxd at 37. I had a dbl mast & 6 months of chemo no recon yet. I then ahd a complete hystorectmy. I had port in & out surgeries too. The chemo damaged my foot so I just recently had foot surgery which I got a blood clot from & pneumonia from being under again with a partially collapsed lung. Would I do it all over again?? IN A FLIPPING HEARTBEAT. If it meant only seeing one more small, hearing one more laugh, consoling one more tear or nightmare, sharing in only one mroe triumph, with each of my kids or only one of my kids I would do it all over. I will have life long side effects sure & as a young wife sex is not the best. Do I care yes but in the bigger picture I am here for them they can tell me their dreams & fears & hug me & hold me & I them & in the long run.... THAT IS ALL THAT MATTERS!!!!! So if you have even one person at all who loves you which I am sure you do.... then I say FIGHT LIKE HELL & deal with it to be here for them. It is no longer a ME world for us it is an ALL ABOUT THEM world & I would walk to the depths of hell for my fmaily & kick the devils ass all the way down if that is what it took for even one more minute with my family,
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i second what lago said. stick around and just use the ignore feature on those that are being abusive. there's a lot of great info her and a lot of good people. you probably have already made an additional friend or two or more! it's all about what your comfortable with. we all face judgements from people all of the time in our lives, we certainly don't have to face those judgements here.
~M
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Pomp,
Not everyone is gonna like me but I can sleep at night knowing that I tried to do the right thing. I have been slammed pretty dang hard by a few of the "bullies"..those who for what ever reason think their opinions and beliefs are the soul of this site and that they have the right to scold and verbally attack anyone who dares to disagree. I even thought about leaving for awhile. But looking back it makes me kinda laugh. Think about it....they really have to be stuck on themselves to believe they harness some special authority LOL...When people act that way it is a sign of weakness...not strength. Personally, I think it takes a much stronger person to laugh at them than to argue with them. In case you havent noticed by now...we really do care about you...no matter what choices you make. If you choose no treatment..we are still here for you. Hugs, Mazy
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Pompeed, the final descision is yours and yours alone and what ever you decide IS the RIGHT descision for you because you have made it. Whatever you decide, we support you. We all have regrets at some point in this journey but the biggest one is always the fact that we had to make these descisions at all.
Peace, strength, Love n hugs. chrissyb
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Here, for what it's worth, are the d*mn elephants:
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Not sure why any of you think anyone is ebing bullied (but then I ahve not read thw whole thread) I have not been anything but supportive on this site ever. If my stressing my feeling that the desire to live is not about US but about those who LOVE US is being a bully. Well, sorry..... I truly feel this way though & I am entitled to my opinion to. I don't ahve to agree with hers. Does not mean I don't care or feel for her or that my heart does not ache for her. All of the above is true. Still leaves me being entitled o my opinion, and hoping she will see her way through treatment. In the end it is her journey & I would support whatever decision she makes as long as it is made in the spirit of what is best for her & in a manner that convinces me she is happy with her decision. I don't feel from the anger & anguish in her post that she is happy with her decision. That makes me sad & makes me want to change her mind.
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I just found this board tonight. I came looking to find others with similar diagnosis' and how they are coping with it. It is a confusing journey for me. There is no cancer in anyone in my family. I never would have dreamed cancer would be one of the illnesses on my 'plate'. However, I have been through the revolving door of the medical world since I have been three years old. I am somewhat jaded. I admit, often I feel like it is a big game between the Insurance companies, Pharmaceutical companies, and the Doctors offices/ Hospital administrations. That being said, I still appreciate the many brilliant medical professionals I have met. I have known people that have been blessed or lucky as some may say to have experienced true modern miracles.
Being new here, I somehow fell into this thread. I cannot appreciate Pompeed's comments. I myself have read them thinking why is she really here and posting. Not that that isn't her right. If I understand correctly, she is very unhappy with the way her medical life has gone. She is well educated, and seems to be of means- goodness in Paris when she had her unfortunate knee problem resulting in a replacement, and she has horses... certainly not a lower middle class life.It sounds like a very nice life inspite of her families illnesses. I can't appreciate her comments. They are all so negative...It takes much more energy to be so negative, than to look at things in a more positive light. Honestly, a person like this clearly eventually will wear others down if she is always finding fault.
OK what is my point- I have not walked in Pompeed's shoes, but darn tootin' I am sure there are many others here with crappy circumstances. Good lord, I thought I had troubles until my girlfriend's daughter and 2 grandson's were murdered in their beds by their father. Why would I want to come here and tell everyone that it is futile to waste time on frivolous cancer treatments without regard to their ways of coping with their diagnoses? It is a fact we are all born to die. I don't think anyone here thinks they can escape it. but they may choose to prolong their life, even in pain, if it means they can watch a beloved one grow up, or to help someone in their life that might happen to have worse health problems!
Sorry, but I think Pompeed rather rudely burst in here and then suddenly changed her tune and accused others of attacking her, when she was the original attacker. When I read others people's kind responses to her, I hoped her demeanor would soften. She should stay, It seems like there alot of wonderful, caring people here. Maybe some will think I am too critical, but my intent is to point out that life really isn't so bad. I love the "Life is good" motto.
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Scrappy, Some one correct me if im wrong but i think what most were talking about was the nasty pm's pomp was getting.
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Hopefortomorrow- Sorry for all you have gone through, All of our emotions have been swinging both ways on this thread, but in the end we just wanted to help her and was hoping she would see how precious life is and want to do anything she could to make sure she had a chance of a long and healthy life.
If you are not in cognito, then welcome and if you go to other threads on this forum you will see how supportive and caring all of us are here, where you will get lots of good advice or just a hug when you need it.
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No I have never been on this site. I can't sleep tonight. I was diagnosed with this the week of October 13- the actual date of my mamogram and ultrasound. My emotions are swinging around too, to be certain! I just found out two days ago that I face 3 (OOps-correction 8 wks) weeks of chemo and 33 radiation treatments. That sounds fairly standard? That is not set in stone yet however. I am wondering if I should go for a second opinion, but I already feel overwhelmed by it all. I am not even familiar with all the cancer terminology. In many ways I am already opting to treatment my physicians are suggesting and just continue on my current path. I live in the Chicagoland area, so I am secure in the specialists treating me. So please be patient with me too. I don't want to feel sorry for myself, though sometimes I do- I do feel like my history makes me stronger and the person I am today.
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Hi Pompeed-
Don't let the bullies run you off!
I think you have written a very thought provoking post and I happen to agree with your logic. I don't buy into it either. That doesn't make us wrong, we just see things differently.
I am sorry that some of the others feel the need to bash you but I knew when I first read your post that you would get some harsh responses. I guess it is like politics....when people don't agree they get mad.
I care about you and I wish you the best.
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Hope: I understand your point of view. Among other things, there is always someone one can identify whose own circumstances are worse than our own. I'm sure there are people here who wouldn't want to trade places with me and live my life and others who would.
From what little I know, however, cancer is a non-discriminatory equal opportunity killer. It is no respector of circumstances of age, gender, family or educational or economic circumstances. So I do not understand how reference to my economic or educational circumstances is relevant.
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hopefortomorrow Money doesn't make you happy or guarantee a great life. I think we've all seen some very unhappy millionaires/billionaires… granted if anyone wants to offer me a million I'm sure it will make me a bit happier ;-)
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The beastly thing does not care one little bit who it picks, when or why - and surely not one of us raised up our hand to say 'Pick me, pick me!' Crappity crap.
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hopefortomorrow- I thought your post in here was quite good. However, may I suggest you try some other threads? This one is a real head spinner (even the elephants failed to lighten it up).
Being new to the subject you have enough to deal with without all the controversy of choices this one seems to stir up.
Good luck to you!
BTW, your name says it all. Good for you.
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Pompeed, I must confess I haven't read the whole thread. You joined last month. Have you been staged yet? I understand your feelings and reactions. I was 42 when I had my first diagnosis. They told me I would be lucky to see ten years. That was 14.5 years ago. I have had two completely different BC's since then, the third was last year. I do not regret one minute of the treatments and surgeries I've suffered through. I would do it again in a heartbeat. Yes there are long term side effects, and yes I will live with the 'shadow' looming over me. So what! I'm alive and I have a great life. Breast cancer is and was nothing more to me than a huge inconvenience. If you can look at it that way then the 'minutes' it takes for surgeries and treatments go by swiftly. When you view the 'minutes' in the perspective of your whole life span, cancer is only a small blip on the map.
I hope you are just venting your frustration. If you walk away from surgery and treatment before you really know what's going on you aren't making responsible, informed decisions. I bet the people in your life who love you dearly want you to live a long time.
We all react differently. Some get angry, some fall apart, some maintain complete denial. That's what's wonderful about this site. We are all different. (We also probably all have post traumatic stress.) Most importantly we (mostly) support, encourage and listen to each other. I hope you can move through your anger, fear and frustration. Being ones' own advocate is important, the more you learn about your cancer the more power you will have in making decisions on your treatment.
And yes, cancer is the most PC disease out there. In addition to all that it does, it does not immediately elevate any of us to sainthood!
All my best to you, She
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hopefortomorrow...I sent you a PM...its a private message and will show up at the top of the screen in pink...Hugs...LowRider
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I was just gonna pm hopefortomorrow too lowrider, but glad you did instead, because i know she will get the best advice
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Pompeed, reference to your economic and educational status is very relevant when it comes to counting your blessings in life. I thank God I have insurance, but my friend who died from lung cancer did not. She lived a very hard life. I felt very sorry for her, She had no choice but to work no matter how awful she felt. I am not a wealthy woman, and honestly I have been very stressed out the last year of my life trying to keep a roof over my head. I don't feel sorry for myself, and I find riches in my family, children and pets.Some people forget where they came, and a crisis for one might seem like a luxury to another. I am not saying you are like that. Pompeed, try to enjoy life more, treatment or no treatment, stop and smell the roses. Right now frankly it is my only comfort. I hope you understand what I am saying. I do not want to argue or pick on you.. Honestly, if I was in a wheelchair on vacation right now I'd be happy as a clam! Margaritas on the ramp to the beach anyone?
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