Tuesday, October 8, 2013

Turn the Tables

What if it was like this?



The man, sweaty and cramping, groaned as he woke with a start. He was, once again, lying in his own mucusy shit. He painfully turned to his wife and gently woke her. On shaky, weak legs, his heart racing, lightheaded and wheezing,  he stumbled to the bathroom, leaning on the furniture to rest as he made his way to wash up.  His hands were trembling so much that controlling the shower head was difficult, and it felt heavy - he had trouble directing the spray. His sleepy wife stripped and remade the bed, wearing gloves she kept by the bedside, throwing the dirty bedding in the wash. Filth washed off, the man reluctantly put on a diaper to save his wife more interruptions and weakly returned to bed, feeling like he'd climbed a mountain.  He was embarrassed at being unable to control his own bodily functions and being as weak as the baby he felt he'd become.

Four years ago, he'd been a healthy athlete, an Ironman competitor. 185 pounds of pure, rock solid muscle, strong and fit.  His life had focused around athletics. His body was a highly-tuned machine, one he had taken for granted; one that would do as he requested as long as he took care of it. Now, he was wasted and withered, 120 pounds at 6'2", muscles hanging from his joints like fraying twine, unable to reliably control the most basic of bodily functions. Even a port-a-potty at the bedside didn't guarantee a night of no accidents. Breathing required oxygen. Eating was painful, each bite of food hit his stomach like a punch. Not that he had any appetite, he ate only a few bites a day and that was to satisfy everybody who was nagging him. He knew they wanted him alive, but they didn't understand what it took. Sometimes, he felt like he was the only person who knew what was going to happen.

Four years ago, he'd sat in a brightly lit medical office and, stunned, heard the words "You have testicular cancer, and it is incurable". The athlete in him denied this, focusing on what the doctor said next, "but we can treat it for some time, there is lots we can try." Hell, he was an endurance athlete, this would be easy compared to that, he thought. He was a winner, this was no different. Just look at Lance.  He would not only be treated, he would thrive.

Four years later, he knew differently. Enduring a 100 mile run or 140 mile triathlon was difficult, but it ended. You prepared, you built up to it, you fueled your body properly. Once the day came, you powered through cramps, pain, exhaustion, but you knew it would have a triumphant ending. When you finished, you then rested, you recovered, you treated your body right, and if you wanted to, you did it again.

What he didn't know was that treating end-stage cancer was like the run that never ended. When you stopped, you died.

He recovered well from his first surgeries and initial chemo was a breeze; his pain was minimal. He was able to keep working, keep exercising, although he grew increasingly tired and weak.  "Peace of cake", he thought.  "Doable."

48 months later, on constant chemo, cancer continuing to grow, subsequent surgeries, septic infections, hospitalizations, it had all taken its toll. 500 appointments later, hundreds of scans and tests, on his 11th chemo, tumors taking over, pain his constant companion, he'd had to quit the job that gave him satisfaction, quit the competitions that were his love, go on disability to help his family, become a drain on society rather than a contributor..

Him.  A former triathelete, successful in his career, successful in supporting his family. Disabled.

He now shuffled through his days, often pulling an oxygen cart behind him, lungs too filled with tumor to go without supplementation for long. No more romantic nights with his wife, no more taking care of her.  Quite the opposite.  His wife, his pretty wife, had to do everything, down to cleaning his soiled bedding, and he no longer felt like a man. She hadn't signed up for this and he felt guilty.  She went to work, she drove the kids to school, to events, she did the shopping, she took the animals to the vet.  She even coached the kids' games. There were days he mustered the energy to watch, sitting on the sidelines with a blanket around him and a stadium pad protecting his bony butt. He cheered the kids on and shivered in the 80 degree cold.

He was always cold.

And yet he wanted to live. His wife, his children, they were important to him above all. He learned to give up the things that formerly had given him a sense of completeness and success - races that made him powerful, weightlifting that made him strong, a job that supported his family, and learned to became satisfied with what was left: his kids giggling, playing a simple board game, laughing over a TV show, an hour or two without pain, sleeping through the night.

It would have to be enough, and he wanted it to last.

One afternoon, he was home watching TV when the doorbell rang. He slowly got up to answer, pain in his back and stomach increasing, nausea beginning as it often did when he stood up.  He opened the door to find a perky, athletic looking young woman standing there in bike shorts. "Hi!" she said cheerily, barely looking at him. "I'm collecting money so I can ride in a 1000k bike race to support testicular cancer. It's a terrible disease, my good friend had it a few years back,  and now he'll be riding with me."

The man sighed wearily.

The girl continued, pony-tail bouncing,  "If I earn $3000.00, I can race for free and half the money goes towards my charity, which is the Tiny Balls Foundation.  They provide information to middle school boys in gym class so they can learn to 'check their balls'.  I have several levels of sponsorship you might be interested in. The first one," she paused and smiled big, "is the Nutsack Nipper, which is only a buck. For that, I will glance and point at your fly and give you a wink." She laughed and said, "I'm sure your package is worth it and we can support cancer for a $1.00!  I'll even let you take a picture of me pointing!"

He stared at her.

She continued. "Level Two is Nads No More. For $5.00, you get a squeeze ball to remind you of what some men can't do anymore,  and I will personally give you a shout out on YouTube as soon as the race is over."

He shook his head and tried to shut the door, but his oxygen tank got in the way. She suddenly seemed to take it all in, the tank, the bathrobe over his distended belly, beanie covering his wispy hair, his unnaturally thin body. He said to her, "I have advanced testicular cancer."

She went on.  "Oh, I hope you're okay.  Like I said, I had a friend who had cancer and he only has one ball and is fine now and his wife doesn't even mind,  so I know what you are going through!  He's such a hero!"

Confident, she said, "I'm sure you'll be fine, nobody dies of testicular cancer anymore,  and you must want to donate then, huh? You can really help cancer patients if give me $10.00 for the Hairy Cherry Package.   Hah, package, get it?"  she giggled.  "For that, I will give you a Red Solo Cup that you can use at my race to fill up with beer as many times as you want!"

The man said, "Aren't you aware that alcohol is linked to cancer? Besides, it's unlikely I'll live to see your race."

"Oh, sorry" she continued, as if she didn't hear. "My grandma died of ovarian cancer so I know all about it. Wow, she really suffered right before she went, I hear.  Okay, how about the Stolen Family Jewels level then? For $20.00 you get a Crotch Rocking Athletic Cup as well as a pack of condoms!   Or, maybe our corporate sponsorship would interest you, our Hanging Brain level. Your prize is an hour with a hooker!"

She handed him a flyer, which had a picture of a squirrel wearing a jock strap, colored purple, with a smiley face on the front above the phrase "Show your support, save the nuts" on it.  She had also included suggestions for ways people could show support for those with cancer, miraculously all of which also helped her:  cheering her on as she races, tweet her campaign to raise money, contribute extra to her so she could also buy a new bike and ride in more charity races.  There were, of course, incorrect statistics about cancer as well as an incorrect synopsis of Lance's story.

"Save the nuts," he thought wearily. "How about save the men?"

The disease that had taken him from a strong, athletic husband and father to a walking skeleton, which had robbed him of his future, would soon leave his wife a widow and his children fatherless,  was a now a method for everybody to make a dollar. The "Tiny Balls" Foundation, he knew, did nothing with the money they raised except print wristbands for teens to giggle over, and not a dime went to research to find a cure. Their popularity meant everybody and their mother wanted in on the action, hoping to prey on the sympathies of others.   Who says no to helping cancer patients?

This disease, the one that had amputated two of his body parts and taken his sex drive, that had taken part of his liver, colon, his lungs - his manhood - and soon will claim his life, was just a way for this young pony-tailed girl to make cutesy, immature jokes while trying to grab their piece of the testicle pie.

Of course, this wouldn't sink in to her if he explained it.   She wanted to run a race and had found a way to get others to pay her entry fee, no different than all the corporations hoping to up their sales by slapping a purple ribbon on a product and donating a few cents to the Tiny Nuts foundation.  Whether their product may cause cancer or not is irrelevant to everybody.  You can't keep the machine going if everybody is cured.

He thought sadly that without even realizing it, this woman was using her friend's pain as a tool to get what she wanted, and the suffering of others was just an abstraction to her, even when right in front of her.  Her grandmother had died of cancer?  A story she could use to make her greed okay.

It seems the only people who recognize the fraud this type of fundraising is and how much pain it can cause are the ones who die of the disease.  And, they don't complain for long.

The man gently shut the door, slowly pulled his oxygen cart back to his chair, sat down, shut his eyes and waited.





What if there was a month for men's cancers? Would it be treated with the same childish focus on body parts and the same disregard for human suffering as breast cancer is in October?  Would everybody try to make a buck?  Would we have tee shirts that say "Save the hard-on?"  Would men walk around in shirts that say, "Yes, my balls are gone, the real ones tried to kill me?"   The shameful part of all of this is that women started it, and women perpetuate it. 

This disease has nothing to do with breasts. It's about having cancer.  In some of us, it becomes a fatal, incurable disease. And, those of us who do have advanced cancer suffer in unimaginable ways that changes our perspective.  Even a women with an earlier stage cancer can't understand it - unless it happens to her, of course.   October and its focus on breasts and cutsie-pie pink and selling products is demeaning to woman who are going through unimaginable struggles.

Would men let it happen to them?  






35 comments:

  1. Great blog! Ironically, a man of my acquaintance was just complaining on FB about how unfair it was breast cancer had a whole month of attention and prostate cancer almost no attention. I agreed that we need to be working harder for cures for all cancers. Then I pointed out to him that not all the money raised for breast cancer goes into research, much is for "awareness." And I asked him, if he were a prostate cancer survivor or patient, would he really want a whole month of reminders everywhere he went at the level it is for breast cancer. His answer was quite emphatically, "NO!"
    Elizabeth J.

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  2. Wow, Ann, what a powerful post - well done and very thought provoking. I am so sick of walking by boxes of "pink" endorsed food in the supermarket, everyone just trying to make a buck. Why do we put up with it??
    Jill

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  3. Oh my gosh, Anne. This is pure excellence!!!!! I'm posting a link.

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  4. Here by way of Debby's link - how prescient a post - I just hit the little x on a blog I like because she had a great perky post about her friend the survivor who was going through her last chemo and she has kicked it to the kerb - and having recently witnessed a good friend have her life take a major left curve due to bowel cancer - well, this post is a panacea.

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    1. I just did the same. I can't take any more "support the pink" from people who should know better. Of course, the ones I removed are also trying to make a buck so there you go.

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    2. if not for your blog, I'd never have changed my outlook on the "pink" thing and a certain organization. I tell anyone who will listen! I rattle off the whole rant. What an eye opener. I found your blog when my mom was diagnosed with Stage IV (my brother was DX with testicular 6 months before).

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  5. Powerful message. Well done.

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    1. Yes, pointed and incisive as always Ann! Thanks so much for sharing your gift with us.

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  6. http://allsquaredup.blogspot.com/2011/10/think-before-you-pink.html.

    October has become the Month of Ugly. Now mixed in with all the disgusting Halloween yuck is the unhealthy food with pink ribbons. Orange and Pink. Pink and Orange. October is a great month to only shop at Trader Joes, they don't put pink ribbons on all their junk food.

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    1. What happened to your blog post? It's gone...

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    2. http://allsquaredup.blogspot.com/2011/10/think-before-you-pink.html

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  7. Wow. What a great message. You go girl!!!!!

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  8. Absolutely excellent. You nailed it PERFECTLY. *APPLAUSE*!!!!

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  9. Well, there is Movember.org, which strikes me as rather silly, but at least it seems to be more balanced than the whole pink thing.

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  10. Brilliant post, Ann. My husband thinks that men would be the same, because they're all just out for a buck.

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  11. Between your posts and some other articles I've read, I look at October and the pink ribbons in a whole new light.

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  12. I don't know what to say Ann - this is truly brilliant. You really do deserve an award for your writing. This is pure class x

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  13. Ann, thank you for a satirical yet very serious look at late stage cancer. I am a Stage 4 metastatic colon cancer warrior (as some have called it), survivor (for now?), or patient (when I'm at the clinic). Whatever you want to call me. I have no idea, and feel like I need to apologize every time I try something. More important, I am a dad (6 year old boy, 20 year old girl), a husband, currently unemployed (technically on sick leave, but still not physically able to earn a living), a student (working full time on my second Masters degree), etc. I get it, I am active in a couple of cancer organizations. I also detest Pinktober, because I find it offensive to women with a serious illness. I also find that the claim of "awareness" is a joke. Maybe when the charity first started, but as you describe in your blog, awareness is not what is needed. I have met several people that can go towards making up the composite view of "the man". Please understand something. Not all men are tolerant of the capitalistic opportunism that is going on. Some of us are quite vocal opponents. I also have friends that I have met through this journey that are dealing with advanced breast cancer. Please know that as somebody who is going through a similar journey to yours I support you in your goal to educate others.

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  14. I work in the American Cancer Society building. The people that work for ACS are wearing shirts this year that proclaim "Finish the Fight". As if we are close to a "knock out" of cancer.

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    1. I know better than to hope the shirts aren't pink.

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  15. Ann-on the one hand I am utterly ashamed that even as a breast cancer survivor (for lack of a better word) I knew so little about the disease killing women like you, and know even less about prostate cancer. On the other hand I am educating myself as much as possible so that I can do my small part more effectively. Thank you for giving us the unflinching, glaring, ugly truth about cancer. One thing I already knew is that cancer doesn't just happen to "other people" We're all in this together. XOXOXO

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  16. WWWOOOWWW!!!!! No one has ever said it better!

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  17. My husband finished his treatment for (Stage I) testicular cancer just one year ago. His risk of recurrence is low. He doesn't know how to describe his journey. He doesn't walk around proclaiming that he is a survivor or talk about how he "beat" cancer because, while the treatment was hard, it was short. We know others are not so lucky.

    I hate cancer. I'm angry that cancer stole my 30-year-old husband's strength for months while we were also raising a newborn. I'm angry that our lives have fundamentally changed forever. There is no longer just a routine checkup or illness. Even those in stage I should know that there is nothing pretty about this disease.

    Thank you for your honesty; this is what drew me to your blog last year while we were still trying to navigate our cancer journey.

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  18. Ann, thank you so much for taking the analogy to its absurd and obvious limits!

    I've coped with Pinktober by avoiding all things commercial, but that isn't an option for most folks.

    Included a link to your blog post at my blog today
    www.mylifeline.org/stephaniesugars

    Ann, thanks for being one of many voices speaking out against the pinkification of breast cancer.

    You must have read Barbara Ehrenreich's 2001 essay
    Welcome to Cancerland
    http://www.barbaraehrenreich.com/cancerland.htm

    A little before your time, but very powerful and, sadly, still pertinent.

    Warm healing wishes,
    Stephanie

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  19. Well stated. I'm tired of the pink. I'm tired of corporations making money off of people's pain.

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  20. Your blog is sharp and true. I so appreciate that you take some of your precious time to share with us.

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  21. Ann, your writing just gets better and better. This post made me cry, then laugh then get angry. People have no idea about the big business of cancer because it is easier to go pink for a month or a day and then forget about. The beauty of your writing is people who read it won't forget what they read and won't forget you, so thanks a million!

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  22. I wish the whole world had to read this post. Every time I see a "Save the Ta-Tas" or similar tee shirt, bumper sticker, etc. I feel angry and disgusted. There is nothing funny or cute about breast cancer, or any kind of cancer, and as you say, the childish focus on body parts is insulting and beyond inappropriate. We as a society need to do better.

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  23. Hi Ann. What great writing! You should submit this to a national editorial.

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  24. I saw a football game the other day. All the players had hot pink gloves and socks. I couldn't figure it out then I realized it's October. Glad to see your story.

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  25. Thank you for your thoughtful and well-expressed comments. I wish you your best possible best,
    -Debra

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  26. Seriously excellent.

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