Saturday, May 14, 2011

Breast Cancer and Loss of Control

I know this comes as a big shocker, but there is yet another organization interested in breast cancer awareness for the 40-and-under crowd. Founded in 2001, ironically, the same year I was diagnosed, this entity's goal is to "infuse sass and style into the cause" and say "Adios [to] fear-based campaigns."

I was younger when I was diagnosed, but I didn't feel sassy nor sexy. My world was too busy spinning out of control. 

OK, I'll say it ad nauseum: Breast cancer is not sexy, cute, fem, sassy, and stylish. No other disease is associated with these terms. And I take offense to this because such levity toward breast cancer shows disrespect to people afflicted by this disease.   

The authentic breast cancer experience is one of absolute fear, chaos, anguish, and loss of control.

Here are just a few ways we in the breast cancer world have lost control of our world:

Body Betrayal, Part I: Our bodies have betrayed us. We are in the prime of life -- until we find out that something has gone awry and now threatens our lives. We have cancer. 

Body Betrayal, Part II: Treatment causes the body to betray itself -- from hair loss to vomiting, from fatigue to intestinal and bladder problems. I'll spare you all my details, but suffice it to say, rather than feeling sexy and sassy, I was beyond ill, even though I didn't lose my hair. I had chemotherapy and radiation simultaneously and could barely function.

The chemotherapy caused cognitive dysfunction. I used to take my brains for granted, until my brains turned to mush from treatment. Depression and anxiety set in. To make matters worse, my white blood cell and red blood cell counts ran amuck, another thing that was out of my control. 

One of my best friends whom I met through a breast cancer support group was Stage IV. I took her to many of her chemo treatments. Turns out the chemotherapy was hardly therapeutic: My friend's bones would break and the cancer raged on. I got to see firsthand how much she suffered before she died. I will always miss her. 

Medical Schedule Syndrome:  One of the hardest parts for me was shelving my life to fit in all the medical scheduling. It didn't matter whether I had a meeting or deadline at work; I was to drop my entire work and personal life to come in for chemotherapy and radiation and for bloodwork and doctor's appointments. My life was no longer my own and centered around the monthly medical calendar the oncology nurse gave me.

Rejection Syndrome: Oh, and while we are going through the hell of being diagnosed and treated, some of our friends decide to reject us. They forever leave our lives, just when we need these people the most. Most of my friends were wonderfully supportive, but I experienced the heartache of people rejecting me. I remember thinking at the time that the rejection was worse than the disease itself.

Body Image Syndrome: The lumpectomy is designed to conserve breasts, but too often, the lumpectomy disfigures them. That's what happened to me. Truth be told, I wasn't feeling too sexy about my body. Eventually, I got a preventive double mastectomy with reconstruction. Some individuals were more than envious that I would get "a boob job and tummy tuck" at the same time. A few insensitive idiots jokingly asked if I could get an upgrade.

After spending hell in ICU, I had a long recovery process. In fact, I am still in constant pain, and even though my doctors did a great job at reconstructing my torso, every day my scars remind me of cancer. Oh, and our breast-obsessed society reminds me, too.

Mind Games: Whatever the medical outcome, mind games and triggers continue to plague us, where we wonder whether any ache or pain is due to cancer.

I don't think any of these "infuse sass and style into the cause." Yet society keeps telling us otherwise.

This posting is an excerpt from my upcoming book, Calling the Shots: Coaching Your Way Through the Medical System. To obtain these excerpts regularly, please subscribe to this blog by clicking the orange subscribe button. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com. Photobucket

24 comments:

  1. I too, lost (what I thought was) a very good friend once I got diagnosed. She just 'couldn't handle' me being sick.

    And I often have to defend myself against the choice I made to not have reconstructive surgery after my double mastectomy (People ask "why not take the free boob job?" - so infuriating, uneducated and insensitive)

    Today, on my blog, I posted a small rant, about 'the cure'. I'd love to know if you've heard about it? It's apparantly significant progress in the cancer curing but the pharmaceutical companies won't back it up because it can't be patened?? What happened to 'supporting research'?

    ReplyDelete
  2. I'm so sorry you lost a friend because she couldn't handle your illness.

    It's ridiculous that you have to defend your medical decisions. Reconstruction is not the right choice for everyone. People can be very insensitive.

    I've read the rant on your posting and followed the links. I hadn't heard about this before, but I am not surprised the pharmaceutical companies are dragging their feet.

    I'll leave a comment on your posting soon. Thanks for commenting on mine!

    ReplyDelete
  3. Rock on, Beth!

    KK, are you talking about DCA? They have gotten some public grants, but because drug companies can't charge a ton of money for a substance that is already around & can be made cheaply, they don't want to back it. Part of it is the FDA process, which is long & expensive. Part of it is just plain ol' stinky. I'm going to try to post a link about the mechanism of DCA: http://ajpheart.physiology.org/content/294/2/H570.full.pdf

    Beth, I don't know what it is these days with this veritable explosion of groups trying to make breast cancer 'sexy.' Some of these activities are started by survivors themselves, who don't see how whack it is to sexualize a disease. And recon is no walk in the park either, as I'm sure you could attest to. Sigh. We just have to keep hollering. xxoo Kathi

    ReplyDelete
  4. Beth I think you summed up the experience perfectly. Although the example site has some good programs for practical help and patient support, the education piece? I almost forgot I was on a breast cancer site. It almost seemed like it was written and illustrated for the Tween brigade. Young doesn't equate to stupid in my mind. And why are we trying to hide frm the fact that breast cancer IS scary? What's even scarier to me than breast cancer itself is how little progress we've made in the fight to eradication despite all this cute and obviously well-funded duplicative awareness.

    ReplyDelete
  5. Beth - you've touched on so many subjects which follow a breast cancer diagnosis.... basically your whole life is affected, I can remember thinking that and wondering if there was anything in my life that was not affected by cancer. But there wasn't. Everything is affected. And society's reaction? To trivialise it with a demeaning culture of the 'cause'. Keep telling the truth. Thank you.

    ReplyDelete
  6. Beth,

    Thank you for posting this. It's infuriating, people "reclaiming" breast cancer. If I could hand it over to them, I certainly would, but what they are doing is undermining our experiences and marginalizing us. On top of everything else, we get the message that we're doing it wrong. And why? All so they can continue an overly sexualized, feminine, childlike version of womanhood that is harmful to ALL of us.

    Katie

    ReplyDelete
  7. Rats, Blogger platform:)

    I've written two comments and lost them.

    The upshot: there'a significant generational difference in cancer perception. Damn. I never thought any of it, the surgery, the puking, the burned skin, the hormonal therapy was a bucket of laughs. I didn't find it funny when a 36-year old friend died of breast cancer, then another at 43. Gee, I have to tell you: they weren't laughing their way down the hall, either.

    We need to keep up the good cause: more solid information, reality-based hope, and advocacy for advanced disease, true prevention, and research to stop this illness in its tracks.

    Looking forward to your book, Beth. You're doing great things,
    Jody

    ReplyDelete
  8. Kathi,

    Yes, it seems an epidemic how many groups are trying to make breast cancer seem sexy and fem. It really boggles the mind. And, yes, the fact that many of the founders of these organizations have had breast cancer is really scary.

    Thanks for taking the time to post a comment on my site.

    ReplyDelete
  9. Anna,

    Yes, the site does seem targeted toward the tween market. And you are right: young people are not stupid; I wish organizations would stop treating the younger audience as if it were.

    Education and funding toward research are lacking, for sure, in our society.

    About the scary part -- cancer is scary, not sexy. Our society just doesn't put as much education and funding for research as they should.

    Thanks for commenting.

    xo
    B

    ReplyDelete
  10. Sarah,

    Thank you so much for your input. You are absolutely correct: cancer changes everything. I appreciate your kind words about my postings!

    ReplyDelete
  11. Jody,

    I'm so sorry for the loss of your friends and all you have been through. It is never fun or funny to go through all this and you've gone through a lot.

    I appreciate your taking the time to read my posting and to comment. The book is in progress and then I'll be seeking a publisher as soon as I can. Thank you for your support!

    ReplyDelete
  12. Katie,

    Bingo! You said it better than I could. We get marginalized and sexualized because it's breast cancer. No other cancer carries such marginalization as breast cancer.

    ReplyDelete
  13. Donna on the TNBC board posted a link to your site. I enjoyed reading it and found it refreshing. As a TNBCer, I wanted to share my experience with you, as posted on the TNBC site in response to your link:

    <>

    Sincerely, Belle_Laide

    ReplyDelete
  14. Beth,
    This is a superb post and the title, perfect! Loss of control, that's the feeling cancer gives you, at least at times. I am really sorry you lost that special friend.

    You describe so articulately what cancer is really like, and sassy and sexy it is not. And I agree with you about some of the campaigns being totally ridiculous and insulting to the young and old alike.

    You've made your points well here, Beth! Great post!

    ReplyDelete
  15. Beth, Here's my post, which did not come out in my original entry of 5/15:

    Thanks for posting this. It’s what we, in my experience, are not aloud to say, even to one another, because we are breaking the socially acceptable code of who we are, or I should write, what we accept being reduced to, marginalized and we are so grateful for it. We know our place in the universe, right?

    This is the disease of NO INDIVIDUALITY. I lost my humanity, my unique human imprint the day I found my lump, and was absorbed into the "Giant Pink Ribbon Mythology" (my term), where all women look alike, have the same cancer, have the same reactions, have the same physical/mental/spiritual/emotional needs and wants, the same intellectual capacity, the same understanding.

    I was disappeared. I became, in effect, my cancer. Just cancer. Am I no longer human? Do not I not have a soul? Do I not bleed when I'm cut? Nope!


    My permission to be absorbed into the "Pink Ribbon Ether" (my term)
    was NOT asked, it was co-opted. Apparently, one loses all rights to exist as an individual. But then, since we no longer exist as individuals, only as nameless examples for "our betters" to use to assuage their "non-afflicted" guilt, what am I complaining about, right?
    Nonentities can't complain. They can't be heard.


    And I lost the right to complain about our erasure, to rage against the dying of our light as viable adult human beings too. Cause don't I know there are folk out there a lot worse off then I am? How dare I???

    If I demand respect from our culture, as a NON-PINK individual, I am "not a team player", I am "ungrateful" that I do not accept the "help" of my "betters" who condescend to buy fattening foods with a pink ribbon on them and do not ask where the donated money goes because they are doing something for the "cause" the "cure" and how dare I question? How dare I and any other Breast Cancerian DARE question anything our betters "do" for us even if we do not ask them for it?

    We are no longer individuals, we are reduced to a pink mass. We are reduced to children, no, we are PETS. We are property of a culture that needs us to make money and feel good about itself in the process and assuage it's non-afflicted guilt.

    If I don't call myself a "survivor" and fight the power on every bloody cultural stereotype I (we) have to endure, as well as all the other crap like dealing with my mortality, and loss of mobility, betrayal of friends and family members, treatment (the LEAST of my problems, though just as horrible and violating as everybody else's treatment, BTW)on top of it all, I have to deal with the rape of me by OUR CULTURE of complicity and all that other sh*t I've read on ***this board*** that many of us go through, have gone through, I am disappeared by my own kind because I broke the code!

    Because I don't exist unless I respond according to the RULES. And I say F*ck the rules.

    An EXCELLENT read on this _Pink Ribbon Blues_ by Gail A. Sulik, the tag line is "How Breast Cancer Culture Undermine Women's Health. I've read it and it's
    EXCELLENT.

    If anyone has had these experiences, if you feel this way, you are NOT alone. We are out there, we understand, and we will not longer be silent. We are Breast Cancer women, just like the pink perky folk and we want equal time.---

    Thanks for the bandwith, Belle Laide

    ReplyDelete
  16. Beth, this is one the best posts I've seen on why breast cancer isn't sexy, sassy or fun. Thanks for laying it out for all to see, and also thanks for including the unexpected, but equally upsetting friendship rejection. I was surprised when it happened to me. Not to mention hurt and a bit guilty as perhaps somehow it was my fault. Who needs that kind of worry on top of everything else cancer throws us?

    ReplyDelete
  17. Belle_Laide,

    Thanks to Donna for posting my link, and thanks to you for your sweet comment.

    I went up on the site and read your story. You have got it 100% right. The pinkification of the world is not allowing us to be individuals.

    I hope you visit my blog again!

    ReplyDelete
  18. Thanks, Nancy, for your nice words and your continued support and loyal readership. Cancer spins one's life out of control like no other. I remember not being able to focus on the simplest tasks because I was being controlled by so many people in the medical system and being betrayed by my body.

    ReplyDelete
  19. Stacey,

    Thank you so much for your kindness in discussing my blog. I'm so glad you found it helpful and am glad you visited and commented on my posting.

    I'm sorry you lost friends along the way. I guess that comes with the cancer territory. Oh well...they probably weren't true friends. You are right: it is devastating when they walk away from your life.

    ReplyDelete
  20. You're welcome, Beth. Thanks for doing the hard work on this. I was heartened when I read your comments and the comments of fellow bloggers.

    One thing I have found, across the board, no matter what kind of cancer it is, is that the--ahem--cancer "victim" does lose friends. The interesting thing for me has been, when discussing this, is that I, as the Cancerian, am supposed to feel sorry for the person who dumps their diagnosed friend, 'cause it's "hard to have a friend with cancer," doncha know. Misplaced sympathy and lack of understanding perpatrates itself with this creepy disease. But of course, we are not allowed to talk about it...too negative, lol.

    Keep up the great work and thanks again for acknowledging me as an individual. Belle

    I will be back, I assure you :-)

    ReplyDelete
  21. Thanks much, Belle. You are right that no matter the cancer, the person with the disease does lose friends. You make a good point about the supposed "friends" suffering because they have a friend with cancer.

    I haven't abandoned my friends who have had/have cancer. Maybe it's because I've been down that road, but I'd like to think that even if I never had cancer, I wouldn't abandon them.

    On a good note, people I didn't think would step up to the plate did an incredible thing for me: they supported me and lifted me up.

    ReplyDelete
  22. Beth, a superb post covering many aspects of the cancer journey. Having read it once through, and right on bedtime, I will be back tomorrow for a re-read.
    I remember saying to a friend that I felt I had lost my independence. She laughed, commenting, more likely I had lost control.
    Once again, I am back on the merry-go-round of appointments etc at thie moment.
    Thank you for your well written post. Food for thought.

    ReplyDelete
  23. Thank you, Chez, and I'm so glad to have you as my newest FB buddy!

    I'm glad you found my posting helpful. I have you in my thoughts and prayers always and will be reading one of your excellent postings soon!

    ReplyDelete