Just wondering....

[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!
Sending loving energy to all my Sisters and Bros... ALWAYS, you amazing group of extraordinary people...
Andi

[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

[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

[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!!!

[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.

[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

[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.

[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..........

[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

[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!

[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.