Type "Amen" if You Like Exploiting A Sick Person

Facebook. My friend for the last...13 years? It has become more of a content feed than anything else. I like to check out what people post- funny videos, cat pics, a meme or two. It can also be infuriating. "What did this jerk say about gun control / abortion / transsexuals in toilets?! Ohh he's gonna get it!"

But the thing that is bugging me to no end are these "Type Amen" posts. They post pics of extremely sick adults and children and read "Type Amen" or "1 like = 1 Amen" and idiots comply. Don't get me wrong, this isn't a rant against prayer in any way. Even as an agnostic, I see prayer as a sweet and caring gesture on behalf of the believer. But, typing 4 letters out is NOT a genuine prayer. It serves in no way but to make the typer feel warm and fuzzy for doing absolutely NOTHING. But, that's just the tip of this iceberg...

 It feels exploitative. The text never tells you who the person is, what they are suffering from, no context to the struggle they are experiencing. No true awareness. Just a startling photo of a person at their most vulnerable. If I ever got to such a state, I would be furious to know a photo of me was being circulated blindly. And circulate blindly it will.

But it's cute and sweet you say. Ohhh, no its not. Check out this article on CNN that discuses not only how one family has to deal with the constant circulation of their daughters pic without their consent (which is old btw, and the girl is now cancer-free) but also from the fact that these posts are SCAMS that can make scammers money. That's right, all your stupid likes are exploiting a poor person and making some asshole somewhere rich.

In researching this I am finding tons of stories of families devastated at having their loved ones photos stolen to create these meme's. Is that really what you want to contribute to?

At first I thought, these photos don't help the person. I'd say "Post a GoFundMe for them, spread information about the condition, etc." but now I see this is much worst than just that. These photos are being stolen and used by unscrupulous people. Manipulating the sick for their own gain- it is disgusting and I for one, want to see this stop.

Next time you see one of these things - hit report. And if you want to pray, do it for real.

GoFundMe

So far the GoFundMe has been an amazing help with medical bills and supplies. I appreciate all of those who have donated, however small. No one in this world is entitled to anything, so I take this as another little sign of love, support, and how awesome people are!

https://www.gofundme.com/45aa7tpw

I try to share other GoFundMe campaigns now whenever I can. It really makes a big difference.

If Your Sad and You Know It, Clap Your Hands

I try not to hide sadness when I feel it. I certainly didn't on my last post. It's because I want this to be an honest place. Pretending everyday is peaches hurts me, and it hurts others by perpetuating dangerous expectations. I dislike to be called positive, and prefer to be realistic. Realistic with hope firmly held in my hands. I don't deny the whirlwind of feelings inside me, but try (key word: try) to remain centered once I acknowledge them.

"Positive" can become an oppressive force when used recklessly. It asks a lot of human hearts. It's not just me, a lot of cancer patients feel they can't give in to being sad, disappointed, without letting down those around them. Being "positive" can crush you. In extreme cases, showing sadness means that you harm yourself physically.

"Cancer can hear your sad thoughts," we are told by society, "and it will grow stronger from them."

 That pressure doesn't help, that pressure brings tired bodies and tired minds into even darker spaces.

As I usually point out, this extends past cancer. When we go through tough times we feel we have to put on happy masks. We tell ourselves that this protects our family, friends, ourselves...but underneath we fester. Crumbling edifices can't support their own weight, much less others.

In our heads, unspoken pains twist and turn into terrible monsters that don't always reflect reality. Being honest about feelings of insecurity, fear, sadness and disappointment take strength. Sometimes just acknowledging those fears shrivels them up in the light of day.

I feel better today about where I am in treatment.

I have an analogy I think of often, odd...perhaps, but one of those bits that stuck with me from reading random books. I studied philosophy and history throughout my life. One book I read talked about how the devil, in the Old Testament, was still an angel of god. He caused bad things to happen to people to divert them from their path, and through that manifest Gods will. I don't believe in the devil now, but it made me think about how things that look terrible on the surface may not always be so. Tragedy allows new opportunities to present themselves. Stagnation lifts. On the wings of chaos, comes a bit of beauty.

I hold new hope that these new drugs will cause a good response. Had I hung around for another year on the old chemo regime, making small gains, I might come out on the other side with a body too weak and damaged to go into surgery, even if I did had clear margins to resect. After that scan, I assessed my situation, faced my fear and reticence, and decided to start over with the same mindset I had at the beginning: Anticipate for the best response, minimal complications, and forge ahead.

Set me on fire...

...I won't tell you it doesn't hurt, that I don't feel fear, or sadness, but I will not back down until I get this done.

The Iceberg: Update on CT Scan #3

Before the News...

Today was my third CT scan. I knew the drill...guzzle own two contrast-spiked Coka Colas for "breakfast", sit, wait, get jacked into the machine via my port (somedays, I pretend I am a cyborg), and get ready to pee my pants. They warn me every time that I won't, and I joke that I already have.

We have been trying not to break down as scans near. We have planned going out to eat, the movies...productive distraction. We try to mediate expectations. I watch them, like balloons, float into the sky. Aiming steady arrows - pop - pop - pop - to break them down so that they will fall closer to earth. If i don't sacrifice a few, all of them will burst in the end.

My biggest fear, to be honest, is that even "good" is not enough. That 30%, 15% reduction...they won't change my fate. I feel like I am chipping away at an iceberg. I am impatient, I want more, a clear path out.

I think we can all relate to the wait. The anxiety of much needed news. A few simple words that alter the course of your life forever. It is a powerful moment.

...After.

We have assumed that the exercise, the energy, the small liver pains were signs of good progress. Unfortunately, my scan came out worst. We haven't lost a lot of territory, so to speak, but the tumors were "more pronounced" this time, and a lymph node nearby showed marked swelling. We hoped to ride out the current regimen for some time, but no such luck. I am on a new drug now, full dose again, and I can expect the usual menagerie of symptoms, plus uncontrollably shitting my brains out. Yay. *sarcasm*

Luckily, we were able to catch it before much progress was lost, but it does put a dent into your moral. The vague delusions of control that you have...all my balloons sagged and dropped to earth. My husband and I try to deal with the irrational feeling of failure and chaos, wildly bouncing emotions back and forth between us. It's a sad day, I won't lie. But I still hold inside me a feeling of hope, the need to forge ahead. A bump in the road, sure, but at least we have an option available. And talks are starting about testing my tumor for possible future clinical trials.

I sit here, morose perhaps, but in a few days I will try anew to populate my skies with beautiful colors.