Just wondering....

[PinkGirl]

Just wondering if any of you who do not have mets feel like you "somewhat" don't belong here, or maybe that you have not had to fight as hard as the others and shouldn't be complaining? I know we are all welcome here and everyone is amazingly supportive and helpful, but..... I often feel like a bit of an "outsider" because I am not on any treatments and I don't have to deal with stage 4ness, cyberknives, gammaknives, tykerb, vaccinations, clinical trials etc. Just wondering if any of you feel the same way.

[Brenda_D]

I'm somewhat "in between", even though I've been Staged at IV, and told I have bone mets (but post chemo bone scan says NED), I haven't dealt with much of what most others here have been through, yet.
I sometimes feel that I don't quite fit, because I may not have as much to say as the long timers here, experience-wise, but we are all HER2 positive, and that's what this forum is all about.
I read more than I post, but this is a great place to get good info, and support when needed.
I do kind of know what you mean though. It's just that we are kind of newly dx'ed, compared to others.

Keep hanging around though. I feel like this is the best place to be for Her2 positives.
We have to stick together!

[Andrea Barnett Budin]

That is an excellent question. I look forward to responses. My Stage fourness and my ongoing Vit H didn't totally do it for me at first. I felt like every one was ignoring me and busily interacting w/those familiar to them. Must have been my frame of mind. Like Havah, I felt like an outsider. But -- now I have settled and feel at home. And you, my Pink One, feel like I've known you forever, regardless of your med history. You are a Sister, my dear. I embrace you and your sense of humor. We need that around here midst all our intermittent dark thoughts.

Come to think of it, at one point on this board I felt scared away. My attitude was so peachy and I did/do coach those newly dx who are sent to me. Friends of friends who want to help but don't know how cause they've never been there. So I definitely have always felt I needed to share my viewpoints and my experience to give someone a hand up. And I often got such positive responses, and would keep up my relationship w/these newfound Sisters and fell in love a few times (you know what I mean). Some of the most incredible people I know I have found through bc, whereas our paths would not have crossed otherwise. So sometimes I'd log on here, way back when, and I'd feel myself being sucked in to the sadness vs what I felt when having a one on one conversation, which reinforced my thinking and elevated me, knowing I was helping another Soul.

My friends who knew of my *counseling* would lovingly tell me that I shouldn't let it drag me down. I've done so well and need to keep my health a priority. I would always tell them, I'm good, I feel wonderful serving this purpose. It actually motivated me to write the book I've been working on for 100 yrs. But for a while there, this board intimidated me and made me feel shaky, unnoticed, unanswered.

Much love,
Andi

[Margerie]

I have never felt I don't belong, even though I am Stage 3 and doing a tumor vaccine clinical trial ;)

I am grateful for everyone's input and discussions. I don't really think of people as their stage. Some discussions I don't have much to contribute- but general support.

I think all of us that have not been diagnosed Stage 4, know we could be next. That is just the facts until there is a cure.

Glad to know you Her2 sisters!

[Audrey]

Hi Pink Girl,
I've wondered, too, about whether I belong here anymore, since I was diagnosed in 2001 and am currently NED. I haven't been on treatment for years and am basically feeling good now and adjusted to my "new normal"--sometimes I ask myself why I still check this website so frequently when this is whole bc experience is supposed to be behind me... the reason I'm still here is because I haven't forgotten what a life-line this place was for me when I was newly diagnosed and didn't know much about herceptin or how to deal with any of this cancer stuff. Having cancer was a life-changing experience for me and even though many of my friends/family act like it's all behind me now for good, I know that recurrence is always possible and I like being able to come here and keep current on the latest treatments. Plus, I'm so grateful to still be here after such an uncertain prognosis, that it makes me feel great to be able to offer a little encouragement to someone newly diagnosed and say "Hey, I was in your shoes once and know how scary it is...I've been there, done that and lived to tell about it" -There is no expiration date on being a cancer survivor--I figure if you've been touched by this disease, you have most likely learned a few things in the process and have something valuable to offer others and pass on.

[Linda]

Thanks Audrey. I agree totally. Wisely written.
Linda

[Joannie]

I can honestly say I have never felt I didn't belong here. I am so incredibly lucky to have found this site and the support I have received here has helped me in so many ways. We all come to this board for different things. Some post a lot, some have great technical knowledge. Others just show the support by letting us know someone is always there. I am probably guilty of not posting as much as I could....I can tell you though, I visit this site 3-4 times a week for 4 years! I pray for all of you; for hope, courage, and faith.
It is difficult at times to read a post when we have lost a sister to BC or when everyone was getting Herceptin and I was ineligible because I didn't receive it during treatment....However, the information and support that I receive here on a weekly basis is a gift I truly appreciate. This website and it's members provide updates on "cutting edge" information about treatment, surgeries, doctors, etc. Thanks for all that you all do. I genuinely feel connected to all of you!
Joannie

[Mary Jo]

Hello,

First off, I hope and pray no one that visits this site feels as if they don't belong here. We are a family. Sisters in the fight AND brothers. As far as the journey goes, we are all at a different place. Just like life. Some of us are stage 0. Some of us are stage 4 and some of us are in between. We are all her2 breast cancer survivors and we are all important in this fight. We all have been blessed with different gifts of knowledge........different gifts of compassion............and different areas of understanding depending on where on the journey we are. We then can use those gifts we were blessed with to share and help those on the journey with us. At times we need to reach out for help and it is those times those "gifts" can then be shared with us.

Pinkgirl, you are important. You are a valuable member on this site and you're knowledge, compassion and understanding can be shared where needed to others along the journey.

Love & God's Peace I send,

Mary Jo

[Sheila]

Pink Girl
As so many others have said, the stage doesn't matter...we are all here because we ARE survivors, or caregivers, or those who have lost a loved one to this disease...each of us has something to give, a way to help someone else...we share a special bond, and the gift to help others through what we have been dealt. There are many early stage breast cancer survivors that can help latter stage ones....I have learned so many things from others here....We are all in this for a better future...for us and our loved ones. The one small bit you share today may change a persons life.

[kcherub]

I agree that we are all in this together, no matter what our "stage".

I have sometimes felt that I didn't have the "right" to complain, or that I didn't have enough to contribute here! However, I have found that everyone here is SOOO helpful and caring and that I can contribute--even if it is just to lend an ear...

Hang in there!

[BonnieR]

I belong to another support group where people sometimes use the term "it hasn't happened to you YET" (meaning "you're elegible too"!). The context is different but it can apply here. None of us knows what the future may hold with this disease. But meanwhile we all share the diagnosis and can support each other. Offereing a sounding board and a shoulder. I am grateful beyond words to have found all of you...

[Bev]

I was intimidated at first, lurked lots. I was so anxious and uninformed. Knowledge is some sort of comfort. I have a little bit of guilt being a II, as we have lost some personal friends as well as many cyber friends, but I can't stop checking in. The benefits far outweigh the negatives. Hang in there, you'll be able to sort out how you feel as time goes on. Bev

[Believe51]

I can express the thoughts that you feel like an outsider because there have been times that I have said outloud that I am not the one suffering from breast cancer, thus made me view myself as an outsider. Of course my girls made me know this is not the case and I am here to say the same to you Darling!! I may not be the patient and you may not have stage IV, yet we are still on this journey and it is important that we all come here. You do belong my Pinkgirl and your journey is still important to us. We are all needed here to discuss our fears, share our joys, ask our questions which may I add helps others when we find the answers. We come here to cry and to triumph, to support and to love, to pray and to conquer. Also we can rant and rave if we needed to. We are a family and you are a great part of that family and surely we cannot be so without you.

So my Love please take my words into consideration. I want you to know that we are all this incredibly important family with bonds that can never be broken. Smile My Pinkgirl and know that you are loved!!

>>Believe51

[PinkGirl]

Hi everyone
I have definitely felt welcome here from day one. It was AlaskaAngel who recommended this Board to me and I am very grateful for that. I am learning so much from all of you -- it has hugely helped me to know other people who are Her2+. I was being honest not critical of anyone. Maybe my "roll" on this Board will be to keep the Chinese Hamster Ovary thread going :) :) :)
Thank you to all of you. I very much appreciate all of the comments from my brothers and sisters.

[tousled1]

No one should ever feel that they don't belong here just because of their stage of disease. It's not staging of the disease -- it's the knowledge and support we get from the amazing women on this website. No matter what stage you are or where you are in your treatment plan this site offers so much. Also, each and everyone of us has a right to complain. We didn't ask for this dreadful disease but we must deal with it. This board is about so much - knowledge, support, compassion, empathy, a shoulder to cry on, a place to complain, a place to share both good and bad days, a place when you need comfort -- just a place where you can come and be 100% yourself. Each and every woman/man who comes to this site has something worthwhile to offer and should never, never feel that for whatever reason they don't belong here. We are here for each other no matter what!

[Andrea Barnett Budin]

So true, Sheila, You may feel like one small person in the world, but what we say and do can make a world of difference to someone else... Isn't that mindblowing???
Andi

[AlaskaAngel]

I have spoken here about intimacy issues, which are no where near as high on the critical list as the issues others face, and in that sense recognize that "complaining" is relative. But I feel that not expressing feelings about it is also a way of avoiding dealing with a genuine problem that doesn't just exist for those who are diagnosed early stage, or are NED. This is also why I think it is so important to be accepting of anyone's choices in pursuing treatment, not pursuing treatment, and palliative care.

The forums are an exchange of information and we all pick and chose what threads we relate to or can contribute something to. The inclusiveness of this site is a testimony to the efforts of Joe and Christine.

AlaskaAngel

[tricia keegan]

I've never felt I don't belong, or an outsider although there's still so much I don't understand that I love to come here and applaud the knowledge everyone shares here.
I'd like to think herceptin has done the trick for me and I'll never get mets but if ever I do, I know I won't be half as scared since knowing some of the brave ladies here who continue to live life and be happy while still in treatments for stage iv. You've all taught me this need not be a death sentence anymore and I recommend this site to anyone just starting out.
Hopefully one day I'll even understand some of the scientific detailed posts which right now just leave me in awe and feeling pretty dumb!!

[mom22girlz]

I always felt like I belonged, but I often feel like I don't have much to offer since I am Stage 1. But, I want all the Her2 ladies to know that I read here often, think of everyone, and pray for all. Even though I do not post, I always pray. I am thankful for all the support and knowledge I receive here. susan

[chrisy]

Hey Pink,
Interesting question...I have often felt like I don't belong because I DO live with Stage 4-ness! Even so, there are things that are less, or more relevant to my situation and I learn from everyone - sometimes even by the questions people ask. You never know how many people YOU may be helping here, just by your presence and participation. Even beyond hamster ovary enlightenment!

[StillHere]

Hey Pinki
I know sometimes I do not chime in when everyone is doing the you rah rah thing. It seems the mind set on this site is that you must fight to the very end, no matter what. I am much more orientated to the high quality of life vs the long quantity. Of course my children are both grown and on their own. I know if I had young children, I would do everything in my power to hang around to raise them. I just want everyone to know that I support you in whatever way you choose to live your life, be it with numerous treatments, or if you decide enough is enough. I reserve the right to change my mind if and when I happen to develope mets. That being said, I will be forever grateful for all the helpful information and warm responses sent my way. For now, I just want to try to live life to it's fullest (yes, that is why I look like a chipmunk with cheeks full of sunflower seeds - I am going to eat what I enjoy and travel as much as I can possible afford) while I am realatively healthy and have the stamina to do so.

[hutchibk]

I like both mindsets, personally. I try to integrate them mentally and emotionally. I live the highest quality of life that I can possibly discipline myself to live, and I intend to live as long as possible. I don't know how my decisions to continue to fight might eventually be altered based on how treatments might play out, but that is not my worry today! My only worry each day, for now, is to nourish my body so I can continue to tolerate whatever treatments I need to try, and do whatever I must do to live healthy and feel good for as long as possible. I am aiming for another 50 years...

[PinkGirl]

Chrisy, That surprises me that you would feel that way because you are stage 4. It seems to me that the "major" contributors here are the stage4ers.
I like your photo with the glass of wine, which reminds me that Tiptoe the hamster likes wine and beer - she got hammered the first night here and I have the pictures to prove it -- maybe it was the jet lag.

StillHere, You mentioned something that I think about alot. I also don't get into the "rah rah, you go girl" stuff very much. I am very, very happy when someone gets good test results, but I often think about how this board would respond to people who are calling it quits with the treatments. Last year, two very close friends of mine died from cancer, one breast the other ovarian. One stopped treatments and the other did not have any options. I also have a problem with the "positive attitude" thing. I also had a friend who died from BC after a 3 year fight. She had the most positive attitude I have ever seen up close, and the disease took it's course and she died. I think of it as a way to blame the person for not healing themselves. And I think a lot of it is because people cannot handle the randomness of this disease. They are so afraid of having cancer that they find reasons why someone dies from it -- like she smoked, she was stressed out, she didn't eat well, she didn't have a positive attitude. I also don't think we know for sure what is keeping us alive. There are people out there drinking green tea, taking supplements, drinking olive oil, pushing the omega 3's and doing very well. But who knows why they are doing well? I am starting to rant....hope Andi doesn't read this or I'll get a 4 page lecture :) :) :)

[Mary Jo]

Hi Pink,

I'd like to comment on a few things you said........mainly, the positive attitude thing. I believe STRONGLY in a positive attitude but not for the reasons some may think. I don't believe a positive attitude can alter the length of our days anymore than I believe eating certain foods etc. can add years to our life. I believe that is in the Hands of our Lord and Savior. Afterall, we are all going to die at some point - whether we eat a cookie or not. That being said..........I believe STRONGLY that a positive attitude and how we nourish ourselves can play a HUGE role in the quality of our lives. I believe being a "healthy" person can play a huge role in the the quality of how we live - how we feel etc. I don't believe we can change the "date" our Lord is going to bring us Home to Himself but I do believe that the consequences of some are actions can play a role in how we "feel" as we walk through this life. Not always, I know.............there are always those who seem to do "everything" wrong and nothing SEEMS to touch them..................but for the most part I believe in the "reap what you sew" mentality.

Afterall, the Lord says these bodies of ours are His temple so by golly, we need to care for them to the best of our abilities.

I heard something the other day on a radio program I was listening too........................Pain or misery is inevitable............the way we handle it is optional!!!!!! My philosphy is this - live your life to the absolute fullest each day - MAKE each day great (if you can) - carry that positive spirit with you whereever you go and care for youself well as it's the only self you will ever have.

Half full - half empty - I prefer half full!!!!!!!!! :-)

Hugs to all,

Mary Jo

[PinkGirl]

Marejo
Hi, I agree with you. If you've got your choice between a good or bad attitude, pick good. I am not all doom and gloom - far from it. I actually have a positive attitude and a "strange" sense of humour. I agree with you that it gives us a better quality of life. When I was first diagnosed, I had so many people calling me and telling me to STAY POSITIVE !!! I got to thinking that if I had one "down" day, the cancer cells were going to gobble me up.
I thought I had enough problems to deal with - I didn't want to start worrying about putting a smile on my sad face. I think the positive attitude is one of the many things we can do to help ourselves have a better quality of life.
I'm still waiting for Andi, Andi, Sweet as Candy, to give me a blast of something. :) :) :)

[Believe51]

If you want to ponder about what people would feel about someone stopping treatment I will give you my opinion. My husband would be no less of a hero in my book if he chose to stop treatment. In fact, I have told him when he chooses to stop that I will accept the choice he makes. When he started this journey he was in the process of already dying and very quickly at that, and I did mention at that time he had the right to refuse treatment. This is a personal disease and we all have our own choices to make concerning the quality of life. I love all my friends here no matter what thier choices for treatment are. It is my nature to do the rah rah thing, which since I know this offends you I will refrain from doing so. Basically in a nutshell, I support my friends no matter what their choice is, just as most of the members here do. Support is unconditional just like the love I provide, it is me and always has been.

As for the rah rah thing I firmly believe in it and it has always been my nature in life long before breast cancer. It is not a blame game if someone loses to this battle whether they had a good or poor attitude. This disease has taken from me some of the most heroic heros, some positve, some negative, some religious, some not. We do not need to smile if we do not feel like it, breast cancer or not for it does not take breast cancer to make a person do that. As for people saying "Stay Positive" or "He will beat this, he is strong & healthy", sometimes people on the outside do not know what to say, just that they want to remain supportive. It is your job as a patient to tell them, "I do not want to smile today", if you do not say what YOU feel, it is all with you.

I am with Brenda, I like both mindsets because it is such a random journey. This is a disease none of us wanted in our lives, what we do to heal or how we go about it is totally up to us and how our bodies accept it. Sometimes that involves a positive attitude, sometimes someone is not religious. All I know is that I shall never know why or what helped my husband to get worse, then better, then worse, now on the up. I shall continue to Believe, I shall pray, I shall do the rah rah thing, I will research, I will shall be the best caregiver that I know how to be, we shall communicate. I know when to push him to eat or to let him sleep, that is from communication of what his needs and wishes are. So PinkGirl, I am sorry if I personally am one of those rah rah persons you mention but it is my means of support and certainly my personality.

If you ask me about this journey I have said before that I view it as a circle. We get diagnosed, we learn, we give, we get the best medical team together, we support, we nuture. We look for the best medicine that suits our needs with this most personal journey. We give back to others who are affected now or maybe in the future to help them on this path. If something in the circle goes amuck, such as the medicine does not work, well, the circle is not complete. The friends I have lost had almost perfect circles, but the chemo stopped or they were weakened because they had no support team. I know this may sound crazy to you PinkGirl, but it is my visualization of this horrific journey. It is a combo of many things that gets us through, sometimes fate plays the part.

It certainly is OUR choice on our attitudes, treatment choices, or even the decision to stop that treatment. I Believe in the power of choice, positive thinking, prayer, some degree of nutrition (hubby was the healthiest person I knew BEFORE cancer so nutrition thoughts are quite different now). I think that quality of life is important whatever your choice and communication is key to obtain your desires of that quality. Again, I love everyone here the same, some women I know better than others, but the love remains the same. I remind you that these are MY feelings and I guess whatever gets me through the day. It is all I know. And I will always view my husband as the hero in my life no matter what. Let us face it, this disease WILL COME TO GET HIM SOMEDAY, just not now.

Believe51

[AlaskaAngel]

I am grateful for this discussion, as controversial as it is sometimes. Feelings can get hurt in such discussions but we all are welcome here whatever our position on this issue might be, and we do learn from each other.

As my contribution to it, I would like to point out that although this forum appears to be largely made up of those in the US, anyone worldwide is welcome. I just want to be sure we acknowledge that worldwide, the group of those who have little access to care is significant -- including a fair number even in the developed countries like the USA.

Acceptance of end-of-life circumstances and that philosophy can be based on something as simple as economics.

Again, I thank Joe and Christine for giving us this place to thoughtfully and politely air our concerns.

AlaskaAngel

[Believe51]

Controversial yes, but I do not think anyone's feelings are hurt ('course I cannot talk for everyone). We all have our views, different as they all may be but they are our feelings. We have the right here to express ourselves as we chose and our feelings are just that, OUR FEELINGS.

I am not hurt and I hope I have not hurt anyone here today or EVER!! I am a bit sensitive today and maybe that is why I appear to be paranoid...LOL!!, but just expressing myself as always.

And just because I may be a rah rah girl, I still get depressed and scared and sick of people saying that it will be alright. I have moments of feeling like 'doom', I get overwhelmed and anxious, with loss of appetite for days. So I am not always rah-rah-ing. There are times that I want to crawl in a ball and die. (How is that for honesty??).

.....but I do still believe!!

Unconditionally I Love You All>>Believe51

PS: Both of my posts are sent with love, no hard or negative feelings, and certainly just so I could get things off my chest.

[hutchibk]

I used to not be a fan so much of unabashed rah-rah, because I am more logically and pragmatically oriented by nature (and astrology, haha), but I feel a bit differently and am mostly grateful for it since my cancer dx 4 yrs ago. It inspires me to push through the tougher, darker days... to not give up now when physical and emotional b/c grind can feel like it's burning me out. This magnificent site and you lovely people remind me, when I need reminding, that a low day today is not the end of the world, but just a low day. This is an exhausting disease. Enough said. And when my partner is burned out by it and shuts down from time to time, I especially appreciate the rah-rahs from my Herceptin Honeys and Tykerb Tigers.

[Andrea Barnett Budin]

AN ESSAY ON *POSITIVITY*. I HAVE GROWN TO HATE THAT WORD! It's like being a *liberal* nowadays. Has come to sound like a dirty word. I am a cheery person by nature. I joke midst most ordeals. Pinkie, you label your sense of humor *strange*. Maybe that's what I love about it. I'm a bit strange myself! I just seem to put a positive spin on life's obstacles. Though I can't find one at the moment re my low HGB count. There's nothing funny about feeling like your life is in the toilet. I just post, and whine. So yesterday, I took the bull by the horns and called my cancer center! I spoke to someone who knows someone about my desperation for energy. Long story, won't bore y'all with right now. Only if you ask... Tehehe.

And no cheery side to losing a long list of loved people to bc, or ca in or anything for that matter. In the last 2 yrs I have lost dozens!!!!!!!!! I have wrestled w/my sorrow, my sense of loss, my consternation w/those who had The very best of attitudes, and a young child who passionately motivated her to stay here... What went wrong???? Surely she did her 6 verys best to hang in! This I KNOW and BELIEVE and feel blown away by, esp. It tampers w/my belief system.

I believe -- what you think about all day determines how you will feel. If you are wallowing in self-pity (like me midst my total lack of energy despite my supplements) and sorrow (that I can even pretend to be normal at this low level) -- I will feel MISERABLE. I think the quote is something like pain and suffering are a part of Life, but MISERY is a CHOICE! I am soooo aware of that. AND, I believe that what we occupy ourselves all day, what we dwell upon -- predicts outcome. I KNOW I can do this, I will survive, I will be victorious -- that's what every *winner* thinks and believes with all their heart, down to their core. It predominates their dreams and takes over their life in big and the tiniest of ways. And, this in turn, makes you feel in control, joyful and serene, KNOWing that you have the power to call what you want to you!

When I have dark thoughts, and of course I have them, I experience them as quickly as possible and then move forward and upward. I made an appt for next yrs mammog and said a silent prayer that I should live and be well. My granddaughter will graduate from middle school in 20??? and I want to be there, but WILL I BE THERE POUNDS AT ME, intimidating me into submission. Then, I move on to, YES, I WILL BE THERE! I WILL BE STRONG AND HEALTHY. NO MORE CANCER. I say this to myself all day, every day. I remain on guard duty, trolling for the tiniest hint of darkness, I claim them as they are mine. I know they need HEALING. I experience the ugly ideas and the emotions that go along w/them and then I shove them over a cliff w/ev oz of strength I can muster (like lifting a car off your child IF GOD FORBID A HUNDRED GEZILLION TIMES SUCH A THING SHOULD HAPPEN). You could do it if you HAD to. That's how I see gloomy thoughts. They must go. I have no room in my life for them. They are poisonous and I will not allow them to pollute the blessing of my life.

I have gone deep within since childhood (when I lived in fear of the next, regular, uproar emoting from my father). I lived among landmines. I learned to be brave and strong. I would go, or run, to the bathroom, close and lock the door in one motion, and go within. I now know that what I was doing was connecting with my Spirit. It is wise and knowing. It wants what you want. It nourishes you and guides you. It has the power to instruct your mind to command your body to do its bidding. If you tell your body (even in whispers) that you can see the handwriting on the wall, that you know your time here is limited -- your body will accommodate that line of thinking. So we must be very careful what we feel our mind!

I, like Brenda, live each to the fullest, and that changes from day to day. The last few wks, since returning from NY w/a cold/flu, coupled w/low for ME HGB count, I have lived in a nightgown. A few days, I put makeup on. A few days, I pushed really really hard and went to see my grandkids, though I was sad that I couldn't bring myself to hug and kiss them for fear I would make them sick. I LOVE THEIR HUGS AND KISSES! They soothe my Soul and lift my spirits. I had to be content w/gazing upon them... Bummer.

I do believe that we are written in the Book Of Life, but that their are several paths we can take. We have been given the power of choice, and the power of our thoughts to call our desired destiny to us, even against all odds! Our faith must be strong and intense to achieve this, but it can be done. I, like Brenda (and I am a whole lot older than she) am on the 50 yr plan, regardless. I see myself far, far in to the future. My picture on the Schmucker's jam jar w/little old Williard Scott pronouncing me 101 or whatever. At my grandchildren's weddings (including the 1 yr old). A great grandmother (or *Mima*) as my grandbabies call me. I'm sorry but I do not relinquish what I see as my God-given powers to be the captain of my fate, the master of my soul (just as the poem Invictus suggests)! I'm no cutsy little cheerleader, I am an empowered Soul, full of the divine energy of my Creator. I am learning to evolve and grow, gleaning Lessons along the way, as I was always intended to do. Scientists tell us even geniuses use only 95% of their brains. Surely, we are meant to come out of embryonic phase of being and move to expand our awareness and our ability to control our lives with greater impact, to begin to utilize the unused portions of our brains and claim our truest destiny.

Sorry, if I sound like I'm lecturing. I am just so very passionate about my beliefs. I do feel more energized as I type these words! Thanks for hearing me out, and for the LIFT! Life is awesome...
Andi

[fauxgypsy]

I have never watched Dr. Phil on TV. I didn't even realize that he was the author of a book I bought recently at Goodwill titled "Life Strategies.' It just sounded interesting. I finally picked it up the other night and started reading it. Another time in my life I might not have picked up on this but that night it meant something to me. I quote "The fact that your problems aren't headlining the six o'clock news does not mean that your problems are unimportant, at least not to you. Believe me when I tell you that if you don't step up and fight for you, then no one else will.....Don't feel as if you should minimize your problems, or apologize for them. Our world has for too long conditioned us not to make waves.....If I've broken my ankle, and the guy in the next bed has just has his leg amputated, that's terrible but it doesn't make my leg hurt any worse." There is more to it but what it is saying that no matter how much we try, it is all relative. And if our problems are not important to us then they will not be important to others.
I have been so aware the whole time since I was diagnosed that there are so many people so much sicker than I am (and at this time who knows what stage I am.) I have worried about bothering the nurse or the doctor because everyone else "obviously" needs their attention so much more than I do. Even on this forum, there have been times when I have been almost reluctant to ask questions about what some times seem to be insignificant problems. Because I know that it can be so much worse. I finally told the oncology nurse the other day, when they had forgotten to schedule my herceptin treatment TWO weeks in a row ( and a couple of other things), that this was my life. I know I am not their sickest patient and if I have anything to do with it I am not going to be their sickest patient. But I am not going to feel guilty anymore because this is my life and I have to take care of me. I will not be passive. None of us on this forum who are not (or are? maybe?) stage four know whether or not we will become stage four. The stages are fairly arbitrary anyway, a division that may or may not exist on a microscopic level.

What we do know is that we have all been diagnosed with breast cancer or have loved ones who have and we all have the fear, the courage, and the need to know more about this cancer that has come into our lives and changed so much. I don't think that there is time to worry about whether we are sick enough to be sick. I think that any question you have is valid because it is important to you. Treatment related questions, intimacy questions, research related questions, emotional questions, someone here has been there. There are so many people here who are so wonderful and open about what they have gone through and some of them have gone through so much more than I have. I am thankful that they are willing to share their knowledge and coping skills. I would never have wished this on anyone but I am so glad that this forum is here for us all to connect with each other.

Leslie

[PinkGirl]

Hi Believe, I am, in no way, offended by the rah, rah, stuff. And if I was, it wouldn't matter on this board because it is full of rah, rah, people. :)
When I reached the 2 year mark, I posted about it and enjoyed all of the congratulatory responses. I'd say that's a bit of rah, rah.

You know that question: What do you know for sure? Well, when it comes to this discussion, I have lots of opinions, but I don't know much for sure.
I was just thinking out loud and certainly don't have a problem with any of the posters who pour out their hearts with exuberance and joy. It doesn't bother me one bit.

I debated on starting this thread. I was going to add it into HavahJ's "Goodbye" thread or as a reply to Tousled's "thread lightly" in the thread about keeping in touch if we're too sick to get to the computer. I wasn't trying to stir anything up.

I gotta go now. I promised the hamster I'd take her on a walking tour of the town. Wonder if I need a leash..........

[Andrea Barnett Budin]

THE OPINIONS EXPRESSED IN MY POSTS ARE A REFLECTION OF MY STRANGE MIND. PLEASE DO NOT TAKE THEM AS FACT PROVEN IN A SCIENTIFIC LAB. YET... tehehe


PS My attitude may sound a bit bizarre, but I have known bc survivors who died of something entirely different 30 yrs later. My Aunt Bernice, Saul's mother and a # of others. These stories captivated. They are true. And they are lessons in and of themselves. My cardiologist (I have hi bp and a body that manufactures cholesterol, regardless of diet) told me yrs ago that it was his job to make sure I don't die of heart disease. He pointed to his many files. Every one of my patients has good bp, good #s in every way. I keep on top of them. Every one. And I thought, great. I figure for now Vit H and my oncs and my supplements and my prayers and my family's love have me covered re bc. So, I'm thinking I better watch extra carefully when I cross the street!

I once read that there's a village in Russia where everyone lives to be well over 100. They were formally studying the habits and genetics of this village, for all of us to benefit. One man, 114, died -- because he fell off his roof while repairing it! Isn't that crazy??

My friend Judy (the widow of a ca patient 1,000 yrs ago) is remarried to a widower (of a leukemia patient). They each lived on my block. Together, their families became one -- w/5 kids. She is wise and fun and one of my favorite pp in this world. She has always said that she just hopes when she dies that it isn't a joke, like choking on a chicken sandwich. She says she eats M&Ms all the time, when she's driving, and she often thinks that she doesn't want to die looking down to reach into the bag of candy and be found covered in M&Ms! Pinkie, my *strange* sense of humor calls that really funny!
Andi http://cdn-cf.aol.com/se/clip_art/gstres/thghts/smile

[fauxgypsy]

Okay, I read more and I have an opinion not a surpise, huh?) about the rah rah thing. I do believe that it helps to be positive. But it also helps me to be able to express my feelings which are not always positive. For me the idea of positive is to make plans for next year, for adding on to the house, for going back to work and being able to run my business and spend time with my family, for my husband and his wonderful support. For having a life during and after cancer treatment, not dwelling on what may happen and living in the now. But there are some days when I want to strangle the person who pops up and tells me to look on the bright side (and I do have much to be thankful for) when they don't have a clue as to what I am feeling or what a sense of loss I have. Or how much it would hurt to strangle them. Right now I am not so much grieving over the breast I lost, as over what right now seems to be lost opportunities; will I ever be able to do the pottery I was planning on, will I be able to help build the room using the nail gun like I did before?. On my good days I remind myself of everything I still have, on the bad ones I sit in my office and cry and have my tantrums because life is not fair, always knowing that it will pass and I will remember how lucky I am in my treatment and all that I am still able to do and all the people I haven't lost. To me being positive is being able to acknowledge all the bad stuff and then move on. Not to let it paralyze me. I am so happy and blessed by the people here who are positive but I know that they have come through this fire and that they make make a conscious choice daily to put the best face on things that they can. Go Andi Go! Believe51, keep believing. I don't mind cheering for you.

Leslie

[Andrea Barnett Budin]

Leslie, I am so busy typing, I just took a minute to read your post. It is so poignant and well expressed. Absolutely right -- THIS IS YOUR LIFE! Regardless of your sickness *score*.

One other point, over the yrs friends have expressed their upset about their health re an array of issues. They often say, I feel so stupid telling YOU about MY problems, after all you have been through. I immediately and always tell them, Don't be silly! YOUR problems are important too. Don't compare them. This is about your body and your life. It is no minor matter. I'm listening. I want to help...

I LOVE ALL YOU WONDERFUL LADIES ON THIS SITE. YOU ALL JUST BLOW ME AWAY WITH YOUR WORDS. Thank you Joe and Christine. This site is such a blessing in my life. I will be eternally grateful. I just shiver to think how much positive energy you have stirred up in the Universe! In accordance w/karma, Cosmic Law not yet codified -- *like* positive energy will be returned to you! I pray for that.

Every thought is like a prayer. Every prayer has the potential to be a miracle...
Andi :)

[PinkGirl]

Andi
I don't want to get hit by a car and die in a McDonald's parking lot with a large bag of Big Mac's in my hand.

[Andrea Barnett Budin]

I type. I stop. I read. I am just moved to respond. So, I just have to say -- Leslie, I know what you mean. Those who tell me, You'll be fine! I hope so, I respond on my weak days, as I'm working through the darkness. You've done it before -- you'll do it again. THAT'S when I want to strangle them. Like doing a triathlon every day for a year, or more. You did it before... They have no clue!

BTW, when I have those Will I ever again moments, I indulge for a while, feeling remorseful and miserable, then I wake up! I go right to I WILL do this or that again! With resolve. And passion. And stubborn determination. (I come from a long line of stubbornness...) Suffering comes when we struggle!, I have learned. When we consciously choose not to give in to the possibility of NEVER, we become filled with defiant energy vs defeatist energy. We gain some control over our lives. We breathe some life into hope. We dare ourselves. We set goals. We do not constrict ourselves to limitations. And we do that, one day at a time. One step at a time. Like if you were wearing a long really tight straight skirt that only allowed you to take baby steps. You just keep inching your way forward... I'M CHEERING for (and praying for and applauding) you LESLIE! You will staple gun again! I picture Scarlett O'hara standing before her burned house on the plantation, with a potato in her raised hand -- resolute and strong! http://cdn-cf.aol.com/se/smi/0201e05fca/08
Sending loving energy to all my Sisters and Bros... ALWAYS, you amazing group of extraordinary people...
Andi http://cdn-cf.aol.com/se/clip_art/gstres/celebrte/fists

[madubois63]

Cancer is cancer no matter what stage or type - it all SUCKS!!! I have never felt like I didn't belong here because of anyone. I've got plenty of experience to offer advice, so that's not my problem either. I have felt that there wasn't any information for me here. Even though I had stage IV Inflammatory BC, mets to the liver/lungs and I am Her2+, I had to put all the cancer stuff on the back burner and the leukemia became my main focus. Unfortunately, even the leukemia chat boards don't have much to offer..not many people dealing with my situation and the boards are very slow. Sometimes people don't post for days. So I come here for the love or support, check on everyone else and offer what I can, when I can.

I am not a hero, brave or anyone of the many things people say. I am very selfish and do not want a world without me in it. As many times as I have been "sick," I never let myself actually believe it. I always try to laugh and live - going places I shouldn't be (according to everyone I should be in bed resting). The more I act sick, the sicker I get. The more I live, the better I feel, so I'd rather push myself and live every day as best as I can. Do I do the rah, rah thing - sometimes. But when I meet someone just starting out, I always offer real advice not the courageous/hero crap.

I have been on other bc boards where one or two people feel it is their duty to start fights and question peoples authenticity. That can make people feel that they don't belong. I have never seen that on this board and think that it is wonderful not having to add an Internet troll to my already huge problems (thanks to Joe for keeping these boards clean).

In my opinion, if you've been stage 0, stage IV or any where in between, if your a caregiver or lost a family member or if your just curious you belong here.

[Andrea Barnett Budin]

Stopping tx is a very drastic, gravely serious and personal decision. I have had to accept and respect such choices on several occasions, though it deeply pained me. I knew it wasn't *my* call. I gently rah rahed (as I could not stop myself) and then I quickly backed away and prayed for them. That is all you can do. I asked permission to pray for a miraculous outcome and received it each time.

Maryann, What is milk thistle? Thanks for all the things to look out for, as we must each learn from one another's experience. You've been through so much, honey, but there is no messing with YOU, that's for sure. You are one strong, determined, focused lady...
Andi

[hutchibk]

Maryann Madubois63 - "I always try to laugh and live - going places I shouldn't be (according to everyone I should be in bed resting). The more I act sick, the sicker I get. The more I live, the better I feel, so I'd rather push myself and live every day as best as I can."


Good for you girl and I so totally agree!!! That is how I approach everyday, too!

Rah-rah!

[Marlys]

I was diagnosed in March, 2005; lumpectomy x2 (for wider margins) in April; started chemo(A/C) on May2 every 3 weeks x4; started Herceptin July 19 every 3 weeks for 1 year; started Rads x30 August 19. Found this site in October of that year and truly began to know there was hope regardless of my stage (which was 1). I knew where to turn when I got the "crusties". I found a friend I could visit when my husband & I went to Phoenix for preseason baseball (Tricia K. who is as beautiful as her picture). I have cried tears of sadness when friends have died and of joy when friends have found reason to celebrate, (Just look at the pictures of grandbabies that some of our children have given us, how could we not be joyful?) I have asked questions and even answered some, like telling Tom that "jacketed potatoes" were baked. (Of course I would know this because I am from Idaho). I do not post as often as some but I do when I have a question or think I have something to offer. I have never felt less because I am Stage 1. I am also a member of a group of people who don't drink and go to meetings and have found friends here who love sobriety, God, as we understand Him, and know that nothing happens in God's world by mistake. So, PinkGirl, don't feel less than because you are not!
Love & hugs,
Marlys

[madubois63]

Milk thistle is a supplement supposed to help in cleansing the liver. I have taken it in the past, but when I had the bone marrow transplant, I had to stop all supplements. Since the liver failure, I have taken it religiously. Did it help?? who knows and who cares - I am better!

"Milk thistle ( Silybum marianum ) has been used since Greco-Roman times as an herbal remedy for a variety of ailments, particularly liver problems. In the late 19th and early 20th centuries physicians in the United States used milk thistle seeds to relieve congestion of the liver, spleen, and kidneys. Today, several scientific studies suggest that active substances in milk thistle (particularly silymarin) protect the liver from damage caused by viruses, toxins, alcohol, and certain drugs such as acetaminophen (aka - Tylenol) (a common over the counter medication used for headaches and pain; acetaminophen, also called paracetamol, can cause liver damage if taken in large quantities or by people who drink alcohol regularly.)
Many professional herbalists recommend milk thistle extract for the prevention and/or treatment of various liver disorders including viral hepatitis, fatty liver associated with long term alcohol use, and liver damage from drugs and industrial toxins such as carbon tetrachloride."

[Andrea Barnett Budin]

My nut/onc has me on ALPHA LIPOIC ACID 300 TWICE A DAY (supposed to detoxify the liver, acts as an antioxidant, neutralizes free radicals, protects cells from damage, can cross the brain barrier, boosts energy). I need all the energy I can lick up.

ANDI :)

[TSund]

You all have been a bridge to sanity for me. I will be forever grateful.

I find myself checking in so often, at first it was just desperately seeking anything that would help Ruth or make this journey easier. Now it's often to check on people that I've never met but that I have come to care deeply about. To see if anyone's come up with the magic cure. To do a little sleuthing in my moments when I "just have to do something". To ask the zillionith question. Yeah, sometimes I do feel like I "don't belong" but it means too much to me to give it up. :) Once in a while I hope I can offer a bit of help or a tidbit of info. That is what life is about; those small moments of making a difference. We all do it in different ways. Never underestimate your own power.

I hope that those of you that are doing well know how vitally important you are to those just beginning their journey, struggling with their journey, or anyone looking to the future.

[hermiracles]

This thread just blows me away. Thank you so much for starting it Pink Girl ~ you are such a sweet heart.
I feel such love for each and everyone of you.
Thank you for being you.
Blessings all
Hermiracles

[goops]

I have only been here a short time but I do feel welcome. I agree with Margerie that all of us know that we could become stage IV at anytime. It is a club that none of us want to join but one thing I have learned since coming here is that there is life after a stage 4 diagnosis.

[BethC]

I feel like I belong here. I draw inspiration from all the strong fighters and survivors on this board. They all, including you PinkGirl, give me hope for the future! So thank you!

Beth

[Catherine]

I feel like you are all my buddies. When I talk to my friends at home, I always refer to "my Her2 site." or my friends on my her2 site. Love to log on and see what is going on. Wish I had more time and energy to read all the posts and respond appropriately. I truly feel like we are all swirreling around in the sky as a big group of special people. I feel connected to everyone....even if I can't remember all the names and all the stories. To be honest, sometimes I do feel just a little self conscious that I am finished with treatment and all is going well for me. But I do not want to disappear from the site....1. because I enjoy it and 2. I feel like you would miss me!!! How is that for being over confident?

Party on, Catherine

[Karen W]

I have always felt like I belong. This board is for information and support and we all benefit from it no matter what stage we are. I am so grateful for this board and the people who post here.

Karen

[harrie]

I have always felt like I belong here. Sometimes I get a bit paranoid when I read about the stages others are dealing with and I think that someday that may be me. That is when I know I think I may need to back off a bit from this site.
I know one thing, I would have felt very isolated if I did not gave this group. There is something about the support received from those who are directly connected with cancer in one way or another.
And.....you just never know when something you share or say can somehow help another.
Harrie

[suzan w]

I have always felt like I belong here!!! It is a wonderful place full of all by best buddies who understand everything, and NEVER question anything that I have asked!!!

[jaybt]

I am a HER2 newie and in remission and I joined this community as I identified with living with cancer and survival.
I have had great help from other member already and the information on new treatment strategies is invaluable.
For me its not a case of feeling whether I "belong"on this site but knowing I can share a journey.

[harrie]

What I really appreciate about this site is the variety of contributions, information, and experiences. So much so that no matter what, it is easy to fit in. Even the "rah-rah" stuff has its place!
On my last day of herceptin, I kinda wanted to go out to dinner and celebrate, but my husband had "plans". Dont get me wrong, he is generally a good supportive guy, but he just had his pre-arranged plans. So I was feeling a bit down....anticlimatic kind of feeling and Jean was nice enough to open a thread saying it was my day of completion for herceptin. I was SO surpised to see the response!!! I can't tell you how good it made me feel. I don't usually get a lot of responses to my posts, and I didn't really think there were many who even recongnized me at this site except for a few. BUT to see so many come out from around who knows where and give ME that rah-rah cheer of completion, totally made my day!!!
So the bottom line is no matter if you share a valuable medical information or just tell someone that you are happy for them, you just never know, it may touch a soul and mostly likely because it makes us feel that we are not alone.
Harrie

[janet11]

This has been the greatest board for HER2-specific information and support. I don't come often now because I don't feel I need any support any more. But I just come here from time to time to see what's new and see if there's someone I can help.

I find if I come here too often I do spend too much time (in my mind) thinking about what MIGHT happen. And life is too short to worry about what might NEVER happen. If it happens, I'll be back -- absolutely. There are super people here and I know I'll get good advice and support.

[harrie]

I appreciate what Janet just posted. I finished all the treatments I needed to do not that long ago. This whole past year, PLUS, has been very consuming for me in regards to breast cancer. It is good having everything behind me, but at the same time it feels a bit vulnerable. Maybe that is one subconscious reason why I don't leave the HER2 site along with wanting to help others with my experiences. I know I still spend a considerable amount of time reading a lot of what is posted at the HER2 site. I feel like i am in that transition period of freeing my mind of being so consumed with breast cancer and all that it entails, yet not quite ready to let completely let go, feeling very relieved that it is pretty much behind me, yet having an underlying fear of what may be in store for the future. I think as time goes on, I will be out of this "transition period" and things will feel more settled down.
Does anyone out there know what I mean?
Harrie

[Joan M]

Pink Girl, I visited this community often in the early days of my early stage breast cancer. I learned a lot. When my cancer came back, I joined. This community is like my other breast cancer support network, which I joined several years ago before my recurrence. It meets once a month. One member had stage 1 bc 10 years ago and still comes to meetings. Another member had stage 1 bc nine years ago and just had a recurrence in her other breast. Several members are newly diagnosed. Some have celebrated five-year anniversaries. Two were diagnosed with IBC. One had a bone marrow transplant in 1996, and is now looking forward to her daughter's college graduation, which she thought she'd never see. Then there's the incredibly sad part. My good friend Janet from the group became an angel in January leaving behind two college-aged children. And my other friend Fran is home from the hospital but on oxygen. But we all have breast cancer in common. Joan

[Joan M]

Pink Girl, I visited this community often in the early days of my early stage breast cancer. I learned a lot. When my cancer came back, I joined. This community is like my other breast cancer support network, which I joined several years ago before my recurrence. It meets once a month. One member had stage 1 bc 10 years ago and still comes to meetings. Another member had stage 1 bc nine years ago and just had a recurrence in her other breast. Several members are newly diagnosed. Some have celebrated five-year anniversaries. Two were diagnosed with IBC. One had a bone marrow transplant in 1996, and is now looking forward to her daughter's college graduation, which she thought she'd never see. Then there's the incredibly sad part. My good friend Janet from the group became an angel in January leaving behind two college-aged children. And my other friend Fran is home from the hospital but on oxygen. But we all have breast cancer in common. Joan