How do you survive being a survivor?

bfbear said:

I wish...
Hello all,

I wish I could feel like you, Claudia.
I was depressed before my dx, and that hasn't changed since the dx a month ago. Yes, I'm on antidepressants, but they weren't working great before and even though we've doubled the dosage, I still wouldn't mind if I just happened to die on the operating table next month during my dbl. mastectomy.
I don't care about the boobs as much as I just don't care to live...it's too much of a battle. I really don't know how so many of you have kept going. I'm already totally fed up with all the care and concern of others and the thought of the burden I am going to be for awhile after the surgery, disrupting my family's schedule, making things difficult for my sister and older daughter who are taking time out of their busy lives to help after the surgery.
I am tired of answering the phone, reading emails, talking in general. I guess I'm just plain tired...sorry to be such a downer...
D

Not a downer
D, you are just being honest. And that is OK here. Listen, if you don't want to answer the phone or emails, don't. There are weeks when I don't. People understand. And if they don't, so what? You need to practice extreme self care right now. At this moment of your life, it's all about you. And your family is there to help. None of us can live our lives completely independently. We all need help and sometimes a lot of it. What do you have to be ashamed about? You got sick and you need help. This will happen to almost everyone on this planet at some point. I know you don't feel like it will, but your treatment will end, D. Life will stabilize. You are very new to diagnosis. It's natural to feel that this is a never-ending stream of suffering. But you will get out on the other side. You don't have to believe me. Just wait it out. And forget the pressure of talking and being with others. Right now, you think about you.

Kristin N said:

Doesn't breast cancer
Doesn't breast cancer "usually" go to your breast, bones, liver or brain, if it comes back? That is what I have read. And, that is why my oncologist ordered a bone scan and a liver scan. Anyone have those after breast cancer? The scans? And, I agree with both of you. Our/My life is defined by cancer and I doubt I can ever change that. And, I don't consider myself a survivor. I consider myself a victim and always will. I hate that word survivor.... Cause how can you be a survivor when chances are..it will come back.

chances are...
Kristin,

Yes, cancer can go to those organs. But this is not inevitable. In fact, in most cases, chances are that it will not come back metastasized. There is no pre-ordained path that your cancer will take. I have an aggressive cancer and the chances that it will come to those organs is still not high. And there are many things I am doing to further reduce those odds: surgery, chemo, radiation, zometa, experimental vaccine, exercise, healthy diet, stress-reduced life, purpose-filled life (still working on that one). I'm not saying you have full control over this. Part of the scary thing is precisely how out of control one feels. But, a bad outcome is certainly not inevitable. Not even close.

mimivac said:

Hi Mitz
Mitz, first off congratulations on being 5 years out of treatment. I can relate to your story, even though I just finished chemo and still have radiation to do. I also was diagnosed at age 34 -- when I felt at the peak of my life. I saw things fall apart in front of me as well. I don't know where the old me is, either. I guess we have to build new lives after this beast -- or at least new perspectives. I'm sorry you lost so much at such a young age. But I do know that the one thing about tackling this young is that we have many years to slowly build back our lives. I think it's great that you have goals -- getting fit is a great one. I have that goal, too. With the weather becoming nicer, I have all sorts of plans of what I will do. Are you a list maker? Studies have shown that people who write down their goals and write down what life will look like once they've achieved them are more likely to carry through. Sounds trite, but I have found that it works. We are all searching for ourselves, I think. Good luck and keep writing to us.

Good morning Mimi
It makes my heart happy that you are coming around good after chemo. Your words give me hope and joy. It sounds like you are doing all the things you need to do to reclaim your life. Making plans and looking forward to some fun back in our lives is what keeps us going. I know i have so many things i am looking forward to doing again. Maybe some of the plans aren't quite what they were before..but hey they are my plans and each one I get to do will make me happy!! Be sure to keep us on your list (i know you will)! i sure have enjoyed all your uplifting and informational posts, my friend..and am wishing you sunshine and good days always.
Happy Easter
Jackie

mimivac said:

Hi Mitz
Mitz, first off congratulations on being 5 years out of treatment. I can relate to your story, even though I just finished chemo and still have radiation to do. I also was diagnosed at age 34 -- when I felt at the peak of my life. I saw things fall apart in front of me as well. I don't know where the old me is, either. I guess we have to build new lives after this beast -- or at least new perspectives. I'm sorry you lost so much at such a young age. But I do know that the one thing about tackling this young is that we have many years to slowly build back our lives. I think it's great that you have goals -- getting fit is a great one. I have that goal, too. With the weather becoming nicer, I have all sorts of plans of what I will do. Are you a list maker? Studies have shown that people who write down their goals and write down what life will look like once they've achieved them are more likely to carry through. Sounds trite, but I have found that it works. We are all searching for ourselves, I think. Good luck and keep writing to us.

50 ft woman is right on target
Claudia,
You put that so well. It's so much how I feel. Something, someday is going to get me, but I don't know what or when and I can't spend the time that I have anticipating it or worrying over it. Then I will rob myself of today and today is a great day. It started when I woke up, just that I woke up. That's always the starting place and then it goes how it goes. Some days are fantastic, some average and some suck but I am here and I am going to live my life like I don't have an expiration date.
Unlike you, I am a bit of a pollyanna. I just seem to automatically try to find something positive in the stuff life gives us. Sometimes I can't. I couldn't when my father died in his sleep from a heart attack when I was fifteen until years later and I realized that it strengthened my bond with my mother. I didn't want all my various cancers but they have made me realize that I am tougher than I thought (although I would prefer to have been a cancer free cream puff). But I think life is a growing experience. We learn from each other, from ourselves, from all that life gives us (the good and the bad). I am so grateful for all of you on this board. I have learned so much from you and admire you more than you can ever know.
I feel deeply for those that have so much harder a row to hoe than I do and my heart goes out to those that are battling depression. I had a brief time (about 18 months) when I was on medication for depression. I wanted to crawl under a blanket and not emerge. I didn't want to kill myself but I would have been happy if something anything just happened to me. I don't even remember when I did emerge from that blanket but I did. It must be so painful to have this diagnosis when someone is already feeling at the end of their rope. I can only say go back to the doctor tell me exactly how you are feeling and ask for different meds or a therapist or something. And follow the advice of the rest of this group. Don't answer phones etc if you don't want to, tell people to back off, take as much control as you can of the situation becuase it is your situation not theirs. However well meaning, friends, family and coworkers need to understand that they don't understand.
And as for me, I intend to sit at the feet of the 50 ft woman and listen and worship and bask in her reflected glory because she is not only tall she is on target.
Love you all so much,
Stef

chenheart said:

Cancer or Cholera?
Well, I don't quite know...if we are all truly going to die of something~ what disease would I chose? Lou Gehrig's disease? Multiple Sclerosis? Alzheimers? Parkinson's? Cancer? I know I didn't want this diagnosis, but I can't think of too many life-altering diseases I would want.
Living in a third world country and dying of dysentery,cholera or starvation doesn't give me the warm
fuzzies, either. Barring any of that~ I could get creamed by a bus,a drunk driver, or get hit by a stray bullet while minding my own business drinking lemonade on my front porch. Living in California, I know there could be a 7 point earthquake tonight which might crush me to death in my bed.

I don't know if I am going to have a recurrance. What I am doing is this: Living my life! I go on picnics, I joined a book club, I walk 3X a week with a walking buddy, I keep abreast (no pun intended) of politics, both local and national, I invite people over, I say hello to strangers, I ALWAYS hug bald-headed women wearing bandanas, I paint my fingernails, I planted a garden. None of this is major, nor will it save the planet, much less my own life. But it helps me be Claudia. I decided a long time ago that Cancer is what I fight, NOT who I am.
And by doing the above-mentioned things, plus a few more, I also became Stronger Than and not Angry At.

I am not now, nor have I ever been a Pollyanna. I loved the mountains, sunsets, flowers, etc etc BEFORE cancer, thank you very much! I didn't "need" cancer to make me more aware of the fragility of life and that I should appreciate it more.

I simply can't turn back the clock to the days before dx. I don't forget that I am a survivor~ every day I am above ground I have survived something!!!

Sorry for rambling here...I love you all dearly and my heart aches for the desperate circumstances so many of us are in. If I had the magic I would change it all. Sadly I don't.

What I do have is this forum, and Kindred Spirits, and a safe place to land.

Hugs,
Claudia

Claudia, I enjoyed reading
Claudia, I enjoyed reading your uplifting post and agree with you. Life After Breast Cancer is different and I'm learning to live as if cancer will not return.

Marcia527 said:

I think what helped me the
I think what helped me the most was realizing what was important. My priority list.

I was scared at first that every little thing was the cancer returning. I've grown away from that now. Why waste today worrying about tomorrow? It may be better than today. I need to make as many good memories now as I can. For tomorrow I will be looking back at it. Although I've forgotten the treatment days for the most part. Maybe selective memory is the answer.

All of you dear friends are
All of you dear friends are so inspiring, which makes me want to go out there and inspire someone myself. Maybe this is what this whole board is about. Encouragement is a major part of survivorship, whether the encouragement comes from family, friends, or well meaning acquaintences. As always, I am encouraged by all of you having set a goal, and for working hard to attain that goal. I have posted this before, but it still keeps me going forward. A dear friend of mine brought a placque to me the day I finished chemo. It says, "Courage is not always a loud roar. Sometimes it is a quiet voice at the end of the day that says I will try again tomorrow." I read this every morning before starting my day, and every night before bedtime. Whatever tomorrow brings, I am going to accept it, take charge when I can, and let others lead when needed. No one knows how long our individual journey will be, but by golly we can bring light to those around us, no matter the length of time we have left on this earth. I am joining your ranks, have started a list of goals, and I will attain each and every one of them before I say "I give". That's a promise. Hugs to all.

Judy

chenheart said:

(((((((((hugs))))))))
Thank you Judy for your lovely post...I adore the quote and may I add it to my list words to live by??

Hugs,
Claudia

I would love you to add this
I would love you to add this quote to your list of words to live by......hot diggidie....my first inspiration! See what this board does to you. Thanks for the post. Hugs.

Judy

kbc4869 said:

Lots in Common
Hi Mitz -- like you, I finished TX 5 years ago this June, I was 34 at DX, and single at the time. I'll share how I've come to think of it . . . and I of course can't speak for all the girls but . . .

I don't think we're ever going to get back the life we had before cancer. I think we need to give up and let go of that life. What we can have is another life. Maybe it has some physical and psychological issues that we'd prefer not to have put in our laps. And dealing with those takes time and can be a challange. We all have to get there on our own terms and in our own time. But the new life can still be good. Like Chen says, there's sunsets and gardens . . . like Mimi says there's cats sunning themselves on the balcony. Maybe focusing on the small beautiful stuff more than the big scary stuff is what can get us through today. I try not to think of yesterday so much and minimize thoughts of tomorrow. When I focus on today, it seems manageable.

That's the secret I think.

You are so right
Kbc4869, you are so right whe you say we have to accept that we'll never get our pre-cancer lives back, but at the same time realize we can have a good, but different life. This is what happened to me about my hair thinning: I was tortured because I kept on expectig it to come back the way it did before. I am still upset about it, but less than before because now I have accepted that my hair is never going to be the way it was, and I just have to deal with it. Actually, a nurse I saw recently when I went to get my Femara infusion told me the same thing.

It's natural to want your 'old' life back, but at least for me personally, it has brought some level of peace accepting that this will not happen.

Ohilly

outdoorgirl said:

bfbear,
You've got a right
bfbear,
You've got a right for feeling the way you do.
I'm sorry that things are so bleak. I remember feeling bad that my husband had to take care of me and sometimes spend his lunch hours,and then part of his working days, taking me to chemo treatments. I was such a firm believer that I didn't want cancer to take over so much of our lives that it totally changed it! It was already trying to kill me,I didn't want it to have any more than it had to!
You know,I didn't have to have full mastectomies,only one partial where the tumor was,but I really admire you all who have to deal with that! I would think that you would have to be a very strong person to go through that!
Could you just take a break from all of that correspondence and just screen your calls? You know,I was usually like Pavlov's dog,and had to answer the phone everytime it rang,but I don't do that anymore. Since being diagnosed(especially then),I screen my calls and whoever I don't want to talk to-we've got caller id on our phone-I just let the answering machine get and then I either call them back or I don't! People are well meaning most of the time,but they have got to understand what you're going through and leave you alone sometimes!! Have you ever heard of Caring Bridge? It's a site online that patients and their families can use like an online diary. That way your only writing down all the information about how you are and how your doctor visits go once,and it's when you feel like it! And your friends,family,whomever can respond and send you messages! I wish I would have known about it when I was first diagnosed! But actually I found out about it when a friend from my church was diagnosed with bc and had to have a double mastectomy followed by reconstruction,and she had found out about Caring Bridge and used it. And she is honestly doing well today.
Bfbear,you've got your CSN network buddies who love and care about you. Let them gather round you and help walk you through-cause they will if you let them! And I am saying a quick prayer for you now! Try to hang in there!
Love,Patty

Thank you Patty, Lisa, Mimivac and
Thank you Patty, Lisa, Mimivac and all of you wonderful, courageous women for your words and the time you took to write them. I can't tell you how hard it is to write my true feelings, but I did last night, and you have made me feel hugged. I am seeing my therapist this week and I'll do my best to be honest with her about the gravity of the situation (it's hard to show vulnerability...I hate appearing weak even if I, supposedly, have a right to).
And today I hardly answered the phone at all, and it helped. All your advice is good stuff. This is definitely a lesson in humility and making priorities. But somewhere along the line, I really have got to find a reason to live, not just make it from one day to the next...I guess.
Thanks again to you all. I very much appreciate all the wise things you write and offer up.
D