Tuesday, August 19, 2014

ALS Ice Bucket Challenge

Unless you've been stranded on a remote island, without access to TV, newspapers, radio, texts, phone calls, or internet access, you've definitely found yourself drowning in videos of everyone from your next door neighbor's kid to Oprah Winfrey dousing themselves in buckets of ice water to raise money and awareness for ALS, or Lou Gehrig's Disease. Of course, Charlie Sheen took the stunt to another level, dumping $10,000 in cash over his head, which he plans to donate to the cause.

From what I understand, if you're nominated by a friend or family member to take The ALS Ice Bucket Challenge, you either need to subject yourself to the torture of a freezing cold splashdown AND donate $10 to ALS, or keep warm and cozy and donate $100 instead. Somewhere along the line the terms have gotten confused and some accepting participants have come to the conclusion that, if they take the plunge, they aren't required to donate money. Tell me, how is this helping anyone? But, no matter. Obviously, the confused individuals haven't hurt the game much since over $15,000,000 has been raised for ALS in the last two weeks. 

Yes, you've read that correctly.

FIFTEEN MILLION DOLLARS.

Here's where my teeth begin to clench and my hands ball up into tight little fists.

Before I start my rant, I'd like to state, for the record, that I'm thrilled that a gimmick that was so simple took off and raised so much money and awareness for a great cause. ALS is a horrible, degenerative disease and anyone living with it, along with their families, deserve a cure that may come from the money that's been pouring in.

But...

As I watch one after another of my Small/Large Cell Neuroendocrine Carcinoma of the Cervix "sisters" suffer and die, the youngest being only 19 years old, I'm left to wonder what kind of internet sensation our small, yet mighty, group of women needs to create in order to fund the research to save our own lives. 

Where is our Ice Bucket Challenge?

Of the thousands of cases of cervical cancer each year, only 100 women will be diagnosed with SCCC or LCCC worldwide. Of those cases, only 15 will live to see their next birthday. Of those 15, half may make it another year or more. But this cancer is sneaky. It hides deep in the trenches like a great white shark and, just when you think it's safe to go back into the water...BAM! It shoots up and grabs you tightly in its jaws, shaking your body around like a rag doll until it can no longer fight the beast anymore and finally succumbs to the attack. Most of my friends and family assume that, since I've been seemingly cancer-free for three years, I'm out of the woods. They're wrong. 

You are NEVER out of the woods with SCCC/LCCC.

Regular cervical cancer has a clear-cut cause: HPV. There is a test for HPV and, now, a vaccine for HPV. And, when caught early, regular cervical cancer is a very treatable disease. Those rules don't apply to SCCC/LCCC. I've seen my "sisters," who were diagnosed at stage Ia, complete their treatment protocol and find out the cancer has spread throughout their bodies weeks later. No one knows the cause of SCCC/LCCC and they sure as Hell don't know how to treat it. My oncologist's exact words, when giving me the rundown of the hysterectomy, radiation and chemotherapy I'd have to endure were, "We need to throw everything at you and hope something sticks."

That was comforting.

So, why am I telling you all of this? What does it have to do with ALS and its brilliant fund-raising monster?

I don't want to watch any more of my friends die. Period. 

It's enough already. We need money for research; we need money for testing; we need money to raise awareness. We need money to let women know they don't have to have a positive HPV test to end up with a cervical cancer diagnosis. 

We need money to save our lives.

And here's what hurts. I've seen all of my friends and family who've posted their Ice Bucket videos and sent in their $10 or more, which is awesome. But how many of them actually know anyone suffering from that disease? Yesterday, I shared the link to the fundraising site for MY cancer on Facebook. The cancer my friends and family watched me fight while I tried so desperately to make it to my own wedding. The one that tore my reproductive organs out right before I planned to use them again. The one that left my kids terrified that their mommy was gonna die. I asked my 812 "friends", of whom, I probably actually know about 200, to please give just $10 and then share the link on their pages to help. Of the 200 people I know, 20 liked the post, 14 shared it, and 2 donated to our cause.

TWO.

Tell me, please, how does this make sense? Everyone and their mother is giving to a charity because it's trendy and they want to make a fun video, but do they even understand the disease they're supporting? Have they looked it up to find out what it's all about or are they just jumping on the bandwagon because everyone else is doing it? How should I feel knowing that my life means so little to my friends that they can't spare $10 to try and save it? I know I'm starting to sound a bit emo here, but, seriously?

Let me take this in another direction for a minute.

Robin Williams.

One week ago, a brilliant actor and comedian took his own life. He was suffering from severe depression and, as were were later told, Parkinson's Disease. I believe Facebook was filled with mental illness awareness memes for about a day before the ice buckets washed them all away. Shouldn't Mr. Williams have gotten the same attention and respect? Isn't mental illness a disease that deserves some awareness?

Look, I'm not bashing ALS here. As I've said, they deserve donations just as much as any other charity. All I'm trying to say is that there are other worthy foundations that need money to save lives as well. Can you find it in your hearts to share some of the wealth? Please click the link below.

Thank you.




9 comments:

  1. https://www.youtube.com/watch?v=ra0e97Wiqds&list=FLAKTrVV6OAUq1O1odxC1Bfw&index=8
    Hey Suzanne --> I'm a medical student from UWS Australia, I saw this through Nicole, a fellow warrior and sufferer of Neuroendocrine cancer.
    I know there currently isn't a known cure for the disease. And I know the rare nature of the diseases means it's unlikely anyone will step in and try to do it... without either huge donations as you say or without a new way of finding cures.

    That's what the video I linked is hoping to do. Basically, for people with rare diseases, instead of chucking random treatment protocols and seeing what sticks on real patients, it takes diseased cells from one patient and chucks any and every medical compound there is and sees which cause an effect!

    And it does it faster than any lab of reserachers can! I know it doesn't lead to more knowledge of the mechanisms and aeteology (cause and path) of NEcacncers but it can help find the cure, and maybe even, through a reverse-engineering like process, find out how it works too!

    I strongly urge you and your sisters to try and contact the doctor behind all this to get one of you to see if there's a cure already out there or in the pipeline which can help you guys out!

    As for the survivors of cancer and the crappy feelings you guys get - I'm a cancer patient who's lucky enough to have survived. I write a blog about my experiences and journey through cancer, and some of the stuff you've mentioned, I know I've gone through.

    Have a read of my story, at how I managed to stay happy and healthy through all the rough times of treatment, and how I dealt with other issues after that - I hope it helps (and feel free to drop in a line at any time too!)

    My story: http://nikhilthegrizzlybear.blogspot.com.au/2013/07/my-story-nd-how-it-can-help-you.html
    How being dissapointed or angry after cancer is not weak; it's normal: http://nikhilthegrizzlybear.blogspot.com.au/2014/05/im-not-brave-or-strong-because-i-beat.html
    How I dael with frustraation of this thing still affecting me: http://nikhilthegrizzlybear.blogspot.com.au/2013/11/frustration.html
    And how I dealt with the loss of some great friends to the same thing I had: http://nikhilthegrizzlybear.blogspot.com.au/2014/01/dealing-with-loss-survivors-guilt.html

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