This Ain’t No Party

A friend emailed a video about cancer, depicting the equivalent of a party scene in the chemo room with kickin’ it song and dance. While my initial response was yes, how awesome, it didn’t sit well with me. The more I thought about it, the more I found it off-putting. I’m not turned off by any patient who utilizes an upbeat spirit to tenaciously cling to hope. We all survive as best we can and I certainly had my own tools to keep me afloat. Dig Pink

Maybe I’ve just had my fill of pink confetti. No matter how pretty cancer looks in pink, until I see a cure, you won’t see me pop a cork or wave a victory flag. In the words of the Talking Heads song, “This ain’t no party…” And while we’re on the topic, it’s not sexy either. If you follow popular cancer sites or read the books, you know what I’m referring to. Let me add that I like and respect the good work this person is doing, including having the marketing savvy to know that sex-y sells. Many have benefited and that’s what matters.

I have a problem, however, with the inadvertent message that glamorizes cancer to the uninitiated. The face we show to the world often depicts the pretty-in-pink Wonder Woman who stares the monster in the face, one stiletto heel on its chest, while waving a fist in victory. Is it any wonder some people don’t understand why we can’t make it to their backyard barbecue? “What do you mean you can’t come? You had chemo two days ago. The barbecue is today!” This actually happened to a woman in my support group. Her friend was so miffed, she wouldn’t speak to her for days.

I’m a cup-half-full person who’s also a realist. At the risk of sounding negative, I feel it’s important to affirm the reader and acknowledge the dark, dreary days because cancer has a lot of that kind of weather. It’s like Alaska in winter except not as pretty.

While I soothed myself through music, nature and spiritual practice, I certainly didn’t feel like a prize fighter. I went into treatment shaken but with a strong spirit, and came out bent over as one who’d become cancer’s bitch – physically, emotionally and financially battered. While I may be deemed cancer-free, truth be told, cancer kicked my ass. It didn’t kill me, but it whipped me.

At one point, my white blood cell count was a “1.” I had a fever for more than a week, mouth sores, and more. The mouth sores were so painful, I couldn’t talk or eat for days and lost too much weight. I was in so much physical pain that in my delirium, I begged God to take my life. I’m grateful I wasn’t taken seriously and am still here because I love my kids too much to move on, not to mention this sliver of time is now nothing more than a dim memory. What remains, however, are some far-reaching ramifications that are the domino effect of illness.

Speaking of which, to my sisters who have been robbed of children not yet conceived, let me acknowledge that as one of the cruelest of cancer’s “charms.”

While many are fortunate to bypass complications and have all the right support systems in place, people don’t feel sexy with multiple drains hanging from their rib cage, loss of hair, or sporting a woolen cap in bed because no matter how much you rock the bald by day, the bald rocks cold by night.

If cancer is sexy, I guess I didn’t get lucky. Chemistry? Forget it. Cancer didn’t arouse me, nor did it romance me. Instead, it robbed my wallet, beat me to a pulp, and left me half-dead on the sidewalk of life.

For me, it was as though my house were on fire. Firemen came with their big trucks and hoses and extinguished the flames. A significant portion was burned and needed repair. I stared at the charred and damaged house while everyone cheered, “Hooray! The house was saved!” And I wondered why they couldn’t see all the loss and devastation or how long it would take to rebuild and restore.

After Hurricane Sandy, you didn’t spot any cheerleaders when people survived the damage to their homes. You saw hurting people who thanked God through their tears that they were still alive as the community joined together to rebuild. People don’t often see our damage because it’s mostly not tangible, but for many, the cessation of treatment marks the beginning of dealing with the fallout and slowly rebuilding their lives.

You can Photoshop and airbrush cancer all you want. At the end of the day, it’s still a stoned-ugly creep with a personality disorder. I wish it had been a hot, sexy time, but I don’t recall cancer’s sensuous lovemaking; only that I got screwed. If there were a shred of romance underneath its grotesque appearance, then it was a toxic, abusive whirlwind that left me with swollen eyes and bleeding lips.

I often hear the clink of glasses in the distance; toasts raised so high, they brush the steps that lead to God’s house. All the while I gaze at the rubble beneath my feet and the shards strewn across the floor. Little by little, I sweep the debris. Splinters of glass still pierce the soles of my feet.

Comments

  1. I always enjoy reading what you write. And your creative imagination is splendid. No question this hits the mark. Sort of odd, as I go through this process and have the opportunity to read the blogs of those who have gone before me, there are many highlights which make me realize I don’t necessarily appreciate what I’m seeing but, it’s easy to follow others indignities without realizing maybe that is not the best way to go about things. dd

  2. Thanks for the kind words, Diane. This writing was hard to post because I felt I risked sounding negative, which isn’t popular. I recognize the good in other approaches and nothing is black-and-white, but sometimes I feel in our attempt to show a smile and be positive, not only do the uninitiated miss an opportunity for understanding and compassion, but those afflicted may feel, “What’s wrong with me? Am I the only one…”

  3. Thanks for this very thought provoking post. I think this definitely needed to be said by someone in the know.

    I was wondering, too, how you feel about the many companies who put out “pink” products that ostensibly support a cure but (to me, anyway) seem to reduce cancer to another marketing ploy. Your thoughts?

  4. Melissa, without targeting specific groups and certainly excluding the many ethical organizations who work hard to help others, I abhor the marketing of breast cancer for the most part. We already have awareness, but nothing seems to change in terms of the brutal treatment, let alone a cure. Too often, I feel like breast cancer women are riled up toward excitement and activity while their illness and vulnerability are used as money-raising pawns. I used to know someone who worked in fundraising and have been privy to more than I wish I knew.

  5. Eileen your writing leaves me drained – that is a good thing. I feel everything you put on paper.

    I never had chemo. I was one of the lucky ones that had clear margins and no node involvement. I somehow feel guilty reading this. I had it easy. Radiation was a breeze for me. The diagnosis was not easy but my treatment and recovery was.

    I feel honored to be able to communicate with you incredibly remarkable women. Cream always rises to the top.

    • Radiation was a breeze for you? I’m glad it was. But for me, it was hell. I am 73 years old and had 28 treatments. Perhaps my age made a difference. My breast was on fire, with weeping sores, peeling skin. It was fire-truck red, and radiated heat. I finished in May, and am still trying to recover from the awful fatigue. I had clear margins and no node involvement, too. No chemo.

      • Linda, I’m sorry to hear you had such a rough time with radiation. I know you’re not alone. I’ve heard horror stories from others. Thanks for reading and commenting. You have my best wishes.

  6. Hi Eileen, I know what you mean about not wanting to sound negative. Like you, I consider myself to be a realist. Whatever works for someone is fine, but truth telling always trumps “positive spin.” Thanks for writing this. Thanks for telling your truth.

  7. Ellen, so glad I could drain you! That’s better than feeling guilty, which I don’t recommend, especially for one like yourself who does more good for the cancer community than anyone I know. I’m glad you had it easier than it could’ve been. If I wouldn’t wish it on an enemy, than certainly not on one as special as yourself.

    Thanks, Nancy. I was about to switch my posts to things like bunny rabbits, kittens and other fluffy subjects, but think I’ll stick to what I’m doing. I also enjoy your blog at http://www.Nancyspoint.com because it’s thoughtful and well-written.

  8. Amen! There’s nothing sexy or pretty about cancer. Inner strength is hot, but I didn’t need to be kicked in the teeth by cancer to get it,

  9. Pink: well said! Inner strength is hot, but we didn’t need cancer to find that out.

  10. glassflowers says:

    Yes! Yes! Yes! I am almost two years out (I spent Valentine’s Day 2011 in surgery- nothing says love and sexiness like having a very large lumpectomy) I still feel like I am slowly finding my way. Cancer kicked my ass too. I was not pretty. I was not particularly brave. And, I hate to say it I didn’t have some sense of clarity. At 57 I’d long since weeded out the good people from the bad in my life (having a child with a form of autism helped with that process – in that I already knew who I could or could not count on for support). Since my diagnosis I’ve also had a few (too many) scares that ended up being absolutely nothing. I remember someone (a friend? okay maybe everyone wasn’t weeded out) sharing stories of other women who were so brave. Role models. Blessed even. And I remember thinking (after PLEASE LEAVE) why I wasn’t feeling empowered by cancer. I felt (and still feel) that I too will cheer when a cure is found. I am thrilled to be here. But part of me will always feel terrorized by breast cancer. And that feeling isn’t pretty. Thanks for being someone who understands and writing about it.

  11. Glassflowers, while your friend meant well, the people who tell those stories are ones who don’t know the back story behind what they see. In effect, rather than feeling encouraged, we feel that our experience is discounted or, worse, wonder what’s wrong with us. This is why I started this blog, especially for those of us who’ve finished treatment and feel lost in the aftermath.

  12. Your quote: “This writing was hard to post because I felt I risked sounding negative, which isn’t popular… but those afflicted may feel, “What’s wrong with me? Am I the only one…”
    WELL, i have always said and still do each day, “Fuck being positive and fuck wanting to be popular.” Who cares at the end of the day. I’ve seen too many ‘positive people’ die and me being the realist that I am, didn’t. Being positive does not cure anyone. It just takes the burden of responsibility off of the medical profession and families responsibilities. Did being popular in life prevent anyone from getting cancer? NOPE! Eileen, you wrote what many cancer people feel deep in their heart. The reason why I do public speaking is so that someone out there in the audience doesn’t feel alone with their thoughts, their feelings. They feel understood and validated by my words. And your audience is no exception. Keep writing what you are writing and don’t give the popular way of thinking, another thought!

  13. Thank you

  14. Marla: Preach it, sistah! xoxo

  15. Thanks for telling the back story ( as you call it). You are right others will feel similar and will feel isolated by the worlds need to air brush or pink brush cancer. I was luckier in my treatment that you and that has always made me just talk about how lucky I am. But I know at some level it’s whipped me too. I also know I have done things I wouldn’t have done, learned things I would have been blind to and made me value life. BUT one doesn’t cancel out the other and that’s the point too. Great writing and truth telling. All my best to you, Audrey

  16. Audrey, if you were luckier than me, that makes me smile. You sound like you have a great attitude because you milked your cancer experience to enrich your life. I have done that as well because I regard the difficult things of life as our greatest teachers. Thanks for stopping by and sharing your thoughts.

  17. Powerful post. Thank you for writing and sharing.

  18. Cindy Kassales says:

    Oh, oh, oh…. this is one of the best descriptions I have read in ages! You hit the nail right on the head with this one.

  19. I always read these blogs and came away feeling like I was ‘doing cancer all wrong’. That was 4.5 years ago. I’m still finding my way, but it’s getting easier and easier. I quit listening to everyone else, and started listening to myself.

  20. Katie St John says:

    Great article, thank you! I have just finished treatment for my 2nd diagnosis of breast cancer in four years and, yes, cancer has kicked my butt, too!

    I will not wear pink or buy “pink” products because I am sick of pink – the “pink industry”. I am so tired of the message out there that I have to “be a warrior” because, it would seem, I will die if I am not, or if I am not positive enough in the pink society’s eyes! I read a great book about “pink” called Pink Ribbon Blues by Gayle Sulik! My next book is The Antidote – Happiness for People Who Can’t Stand Positive Thinking by Oliver Burkeman, which promises to be a great read!

    By the way, I am a wacky, 59 year old Brit, with a wicked sense of humor and yes, I can see humor in many places and while there is nothing to laugh about with cancer, on my days of treatment a I posted a “Creating Havoc in the Cancer Ward” cartoon – it was a metaphor for what cancer has done to my life – created havoc in so many ways!

    I am definitely a realist with a positive attitude about life in general, and I need humor to get me through many dark spots but if I hear “be positive” one more time from someone I meet, there is no telling what I will do or say!

    Thanks again for this article.

  21. Sally Gomez says:

    While all cancer patients get treated for cancer, not all patients have the same experience or attitude about it.

    Some want to dance….some want to cry….that’s their choice. I happened to be the “dance” camp, but I was always sensitive to those who needed a shoulder to cry on, just as they knew I wasn’t “making light” of cancer in their face when I “made fun of cancer”.

    There’s no “right” way to deal with this shit.

  22. I understand completely. It happens even when you have mets. I went back to work last month after brain mets put me in the hospital and 14 WBR treatments. Thankfully I’m currently NED, but everyone around me is so happy it’s over (it’s not, but they want to think so) and I’ve got a limitless future ahead of me (um…no) that I almost feel guilty when I have bad days because they seem so disappointed.

  23. This post is spot on about the truth when it comes to going through treatment. You expressed it so well and I am a half full glass person too. I am so glad I found your blog through Nancy. There is nothing sexy about this disease and your description of what you went through bringing the fire image in to it…. I can relate so well to my experience with this horrible disease.

    • Back in the ’70s we joked about how many of us hadnt lived in an “Ozzie and Harriet” type home that we as consumers had been spoon fed to believe was the way life was “supposed” to be. Funny thing is we’re still being spoon fed (albeit more trashy) types of “role models” for the way life “should” be.
      I dislike feeling as though there was some sort if “Cancer Olympics ” and I’d never “qualify” ;-/ ( insert snarkiness)
      Seriously, we all “do” cancer differently and turning off the “TV” and supporting each other is the only way I see us overcoming the pink washing.
      Enjoyed your posting very much!

  24. Wow, lots of new readers/commenters. Elisabeth, Cindy, Marcia & Susan, thanks for the kind words. Funny that I initially had some reticence about posting, but it seems many welcomed a candid take.

    Debby and Sally, I agree there’s no one right way. Everyone has a unique set of stats and outward support that all affect our experience. Cindy, I’m glad you were in the “dance camp.” I find most of us have a mix of good and bad days, but on my good ones, I’d sometimes have a private dance party. Literally. Moving to music felt so healing. As for the bad days, I’m glad I could write about it as well. My aim is to give voice and validation to the aspects that are most difficult. Those times in particular can be so isolating. In the blogosphere, we all find we’re not so alone.

    Katie, I don’t know how you got through this twice, except that you had no choice. Keep up the wicked humor. It’s a healer and anchors us.

    Acacia, so glad you’re now NED. People don’t know what to say and it’s not their fault, really. How could they, but that’s why we’re all here for each other.

  25. You bring back all the horrible memories of my own chemo experience – no anti-emetic the doctors prescribed had any effect on the crippling nausea and vomiting I experienced after each dose. I will never forget how sick chemo made me. But moving on from that, I love your seasons analogy – it’s one that I often thought of throughout my own treatment, especially as I was diagnosed in the dying days of fall, lost my hair in the depths of winter and saw it slowly grow back in spring. By the summer all my treatment was over – it really did follow the seasons perfectly!

  26. oops that comment was meant to be on your latest post Eileen 😉

  27. Marie, not a problem. The posts all blur together anyhow. Your input is always welcomed and valued.

  28. you are a cancer survivor
    and I am also a cancer survivor

    read about me, than we shall discuss

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