Monday, August 18, 2014

I'm just a person

Here's the thing: I'm just a person.

Just like you. I have good days and bad days. Days in which I think I rock and days in which I wish I could crawl into a hole for a while. I try to be nice. Sometimes I fail. Some days I'm ready to face the world head on, and others I'd like to just lay in bed, reading a good book. Some times my smile just can't get any bigger, and sometimes I'm crying so hard that I'm on the verge of hyper-ventilating. Sometimes I'm so happy. Other times I feel the weight of sadness on my shoulders so deep I'm afraid it's going to push me into the earth and I'll never be able to climb out. I have good days. I have bad days. I mostly have somewhere in the middle days. Moments I doubt everything I've ever done as a parent and other moments I have confirmation that I must have done something right. Sometimes I'm healthy. And sometimes I'm not.

I'm just a person.

And yet, some times I feel like I'm supposed to be this warrior, this hero, someone you can look up to. I'm supposed to stay positive. I'm supposed to tell you that cancer was a gift. Somehow, after going through cancer, I'm supposed to come out stronger and bigger and brighter and more amazing than I ever was before cancer.

This is the cancer narrative I face almost daily. Did you cry as you were being wheeled in for your mastectomy? Oh, you should have danced! It would have gone viral on you-tube and facebook! And everyone would just be so amazed at your positive, up-beat attitude. (Never mind the fact that I couldn't have danced once I was wheeled into the OR if I wanted to because of how things were set up). {side note: I'm not saying dancing is wrong. If it makes you happy, than it is right. But someone not dancing, while not as video-worthy, is no less right or better}.

Recently, Amy Robach (whom I wish nothing but good things for and am not trying to single out per say, she just provides the most recent example of what I'm talking about) gave an interview. She says

There are nearly 2 million breast cancer survivors in this country, and we are thriving, excelling, living. Yes, it is a hellish journey through surgeries, chemotherapy, radiation, and drug therapy. But you will emerge a better person. I promise. You are stronger than you think, and you will find your inner warrior. Your family and friends will marvel at your strength, and they will weep with you on those days when you just don't want to get out of bed. It gets easier, and after this, there's nothing you can't do! (emphasis mine)
 Hear that breast cancer survivors: there is NOTHING, not a single damn thing, you can't do.

Well, except I can't lift over 5 pounds (which I mostly follow). I can't be outside for long in heat and humidity. I can't manage to stay healthy for very long. If the humidity is bad, I can't walk very well because my joints get inflamed and angry and don't want to move. I can't wear underwire bras anymore. Sometimes if I lay the wrong way, the pressure of the implants makes it hard for me to breathe. I can't feel touch on my chest (pressure, yes, but a light touch, you could do it and I'd never know unless I looked down and watched).

Oh, I know, I know what you are thinking ... Brandie, what she said, it's metaphorical, it's not literal. Stop being so darn literal!

Well guess what, there's a lot of things I can't do, metaphorically either. Sometimes I can't relax. I panic, positive the cancer must be back. Sometimes I can't shake the depression that I have. I just can't. I want to be happy. And carefree. But I can't. No matter how I try.

Here's the thing, when I had surgery, and chemotherapy, and radiation, and more surgery, and implants put in, it wasn't like I was Peter Parker getting bit by a radioactive spider - despite having undergone radiation therapy. No where during any of my treatment or therapies was I given a superhero cape "And now, Brandie, we your doctors, doth bestow on you, this cape. This cape will make you fearless and stronger. You will emerge better than you ever were before cancer. Wear it wisely though, for with great power comes great responsibility. You must always smile. You must now be ten times more interesting than you were before. After all, this is a mighty gift, bestowed upon the chosen few who have cells that grow in the wrong way. You are blessed among woman and will now live your life on a pedestal, where you must proclaim that all other blessed woman are blessed like you!"

Oh wait. That only happens in movies, in tv shows, and during interviews where people like to sugar coat cancer, especially breast cancer. As if it is this wonderful gift wrapped ever so carefully in a big pink bow and, hey, some days will be hard, but pshaw, most won't be and YOU'RE SO STRONG NOW IT DOESN'T EVEN MATTER!

Look, it would be great if this were true. But I am not the same person I was before cancer. Some things are better, some are worse, and some are just different. I am grateful to be alive, but I am still incredibly angry at what I had to endure, what my family had to endure. I've got a lot of anger that I'm still dealing with lingering side effects, that may continue to linger, forever. I'm sad when these side effects cause me to have to not do something.

There were days when I was able to dig deeper and find strength I never thought I had, but mostly, I just got through it a minute at a time. Sometimes, a second at a time. I put one foot in front of the other, they way we all do when we are walking through something that is taxing, hard, or difficult. We aren't consciously being strong, or brave - no, we are just doing the best we can with what we have. And sometimes that means staying in bed all day. 

Not to mention, none of this considers the women who are living with stage iv breast cancer. Or women who are in constant pain because of all the surgeries and treatment. Or the women who lose friends, family, and other people they thought they could count on because the cancer scared them away, or changed everything. Or the women who lost jobs because they just couldn't be well enough to get to work. The women who lose their children in custody battles, because they are not considered healthy enough by the courts to be a parent anymore. What about all the friends I had to say good-bye to because their breast cancer took their lives? What about them? What about the women who are struggling with depression, anxiety, PTSD, who have heart problems, lymphedema, get secondary cancers from treatment.

What about them?

40,000 woman die each year in this country from breast cancer. 400 men die each year.

Their voices deserve to be heard. Their lives deserved to be talked about, shared, looked at. They may not get the happily-ever after ending that will land them on commercials for some places that treat cancer. Their stories are not pretty. They are not always strong. There are plenty of things they can't do.

Is it sometimes hard to hear about it? Yep. Imagine what is to live with it. To feel your story isn't being shared because it isn't deemed good enough, happy enough, perfect enough.

I have tried to not be shy about sharing the darker moments, the harder moments, the struggles. And I have been surrounded by some great people who give me the space and the time to do this. Occasionally, and never from someone who I'm that close too, will try to put me in my place. Occasionally I'll meet someone who tries to tell me that not-so-great parts don't matter because I should just be happy I'm alive. Someone, practically a stranger, once asked, straight faced, "Is breast cancer that bad, or are you just playing it up for sympathy?"

Yeah. Just let that sink in for a minute. For real. Can you imagine asking anyone with almost any other illness that question?

But are you really surprised someone could think that? No, I mean, really? Because, if all we hear is the pretty, pink, wonderful, cancer-changed-my-life message, guess what we are left thinking: well it can't be that bad.

Well it can be. Let's start talking about it all of it - the good, the bad, the in the middle.

Because women who have breast cancer, are just that: women. We are not superheroes. We don't get capes with our cancer. We get through the day one moment at a time. Side effects linger. Some days are better than others. Some days are worse than others. We are happy to be here, still alive. But we are also dealing with everything that comes along on this ride. We are mourning the loss of a part of our body.  We are happy. We are sad. We are angry. We wonder why us. We wonder, why not us? What makes us so special that we got this disease? And what makes us so special that we think we shouldn't have gotten this disease.

We are, after all, just people. And that's how we want to be treated. As people. 

Or I should say, I am after all, just a person. And that's how I want to be treated. As a person. Not a survivor who is now capable of doing all things. I'm just a person.

11 comments:

  1. Anonymous1:50 PM

    Your perspective is always an eye-opener. I love you to the moon and back!

    Sue Rylko

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  2. Thank you for writing this. I am so weary of the expectations placed on cancer survivors to turn their whole experience into a rah, rah kind of thing. You're so right. We're just people doing our best (most days) to get by. Well said.

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  3. Of all the idiotic heartless things to say to a person. *shakes head*


    Now then....


    *stands up and applauds*


    First, you're brave, and strong, and admirable, and human.


    No one in the media or entertainment business ever tells the complete truth about people living with cancer. They don't tell the complete truth about what it's like to survive cancer either. No one ever mentions the emotional and physical aftermath.

    I just shared a link from one of our local news stations on Facebook today. In the story a cancer and stroke survivor (a doctor no less) tells his story of having a good attitude through it all and how Robin Williams should have laughed his way through his depression. He asserts that Robin Williams would still be here if he'd just laughed his way through his depression. The media just has to stop writing stories like these, they give people warped ideas of what cancer and assorted other illnesses are really like.

    Oh and can we introduce your person to the person who asked me when my hair is going to grow back and since it isn't when I'm going to start wearing a wig?

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  4. Just because you can sometimes extract the good from a bad situation--a renewed appreciation for the gift of life, and so forth--doesn't mean that you forfeit the right that all people have to sometimes feel bad about things. I think you can't heal in any meaningful way unless you get to EXPERIENCE WHAT YOU ARE GOING THROUGH. And what you are going through sometimes sucks beyond belief. Other people get to have the full range of their life experiences. Why shouldn't you?

    Wonderful things, like being a parent, sometimes suck. Horrible things, like cancer, sometimes bring gifts and blessings. And you get to feel it all and express it all. I would actually enjoy smacking down anyone who tries to bully you into experiencing your cancer in a way that's most comfortable for them. If they want to be a superhero, let them go get their own damn cancer.

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  5. Ginnie10:19 PM

    GRRRR.... people are so crazy. I'm sue I've told you before but i HATE it when people tell me that I'm so strong or such a great fighter or whatever other BS they say...laying in a bed or a recliner letting my nurse/doctor team shoot me full of poison doesn't make me strong. If anything it makes me weaker and I resent that people ignore the real me and try to make me into something I'm not.

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  6. I love this Brandie.Not the pain and suffering, but the honesty.

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  7. Thank you for writing this, Brandie. Going to share it now!

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  8. I, for one, am glad to say I know you. I, for one, am able to say I'm glad you're here. I, for one, admire your honesty, your feelings, and regret that I may have been one of those people who might have forgotten that you're just a person - and Honest, Strong and Courageous person - and put you on a pedestal. Truth be told, I'm not sure I would be able to handle all that you have handled, and handled well. For that reason, I admire you.

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  9. Anonymous4:03 PM

    I would guess that for some people, the "rah-rah, you're a superhero" comes out of realizing how much cancer sucks. They want to be supportive. They recognize that someone battling such an illness may need more support than the everyday average. They mean well, they just get carried away.

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  10. I came over here from Nancy's blog and I'm glad I have found you. This is an excellent post. I am still quite new to the world of breast cancer ... I only got diagnosed in June ... but I'm learning all sorts of things, including how to deal with what OTHER people think and say about my situation. It's complicated and an emotional minefield.

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  11. As a fellow breast cancer survivor, I have to say kudos for saying exactly what I've been thinking but haven't necessarily been able to put into words. Just like you, I feel the pressure to be happy, bouncy and positive as report for radiation treatment 5 x per week. My husband started telling me, it's all over- as soon as I had my double mastectomy with my tissue expanders. Boy, how I wish that were true. I don't need to tell you that these expanders are anything less than pleasant, and undergoing radiation therapy while having hot flashes, it's no picnic. And the side effects of chemo are lingering, and now I've got lymphodema.... So, is it really over just because cancer is gone from my body? I think not! I have moments when I feel ashamed that I'm feeling sorry for myself, because after all, I am alive.

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Seeing your comments makes me smile! Thank you so much =)