Pinktober and Voldemort

Chemo brain, whack a mole, pinktober.

I totally forgot about my echocardiogram appointment at Southampton hospital yesterday.

Yup

After scrambling so hard to get an appointment on my day off.

So now we see if we can schedule one the next time we go to the hospital.

As for whack a mole….

The nausea let up yesterday and bone pain became manageable.

The liver pain that radiates to the shoulder and makes it hard to breathe decided to show up in full force again. Ive never been stabbed, but I think it would feel like that. All night I kept a heating pad on my side and shoulder and took shallow breaths.

Makes for a good night sleep…(*in a sarcastic voice*).

Today also starts Pinktober.

Please… I’m begging you… don’t post on my wall pink ribbons, or videos of people wearing pink, or sports teams wearing pink.

I will throat punch you….in my mind.

Pink is not a cure.

All those sports teams? They’re just trying to look good. How about they save the money on the merchandise and put it to research?

“No more pink merch! We want RESEARCH!”

Mammograms do…not…save…lives.

They simply tell you that you have cancer.

RESEARCH saves lives.

I seriously need to take deep breaths despite the liver pain every time I see people in pink and tiaras and throwing parties. How did breast cancer become a party?

All month long, stage four breast cancer patients are assaulted and are pink everywhere. You cannot get a mental break and pink pops up all over and vomits all over you. People say, “You’re my hero…, God gives battles to the strongest…You’ve got this!” While oncologists are like…”We still have some options left before you die.”

All the slogans too…”Save the Tatas!” Actually, i would gladly amputate my breasts to be able to live and see my children grow up.

“Squish those boobies!” Squish all you want, but for those of us diagnosed stage four denovo, we are stamped with the terminal stamp immediately and sent into the corner with the other pink elephants in the room. Don’t make too much noise, or else you’ll scare all the other women who think they are free and clear and never want to talk about it again.

“Don’t be a Debbie death downer. Be a positive pink pattie! You’re scaring the others!”

But thirty percent of those women will end up in the corner with us, crying, “What the hell happened? I was five…ten…fifteen years cancer free?”

Lesser stages treat us like Voldemort, from Harry Potter. “He who shall not be named.” Listen, not saying “metastatic breast cancer/stage four” wont make it go away.

Say the words.

Even the media makes it too scary.

“Died from complications from breast cancer” MEANS “murdered by metastatic breast cancer”. But you go and keep on making it light and breezy while men and women drop like flies around us.

116 a day.

And that’s right… men have breasts too. It’s even more devastating for them. Which is why I despise the sexualization of the disease. We don’t make men with prostate cancer wear “Save my balls”. Would a man wear “Save my tatas?”

Don’t even get me started on how the survival rates for minority women are so much lower. Their lives are just as valuable and precious as mine. Period. Cancer is apparently more advanced than us in that it doesn’t see skin color. Everyone is fair game, but if your skin is darker than mine, we probably won’t get the same care in many places. That is so wrong. We all deserve the same care.

Companies like Avon, Susan G Komen, American Cancer Society… they will all vomit pink over everything this month , and people will feel good buying their pink crap. They’ll think…”I’m helping!” No… you’re gullible.” And just spent twenty bucks on useless crap. You’re actually paying for MORE pink crap and salaries. Only 2-7% of funds raised goes to stage four metastatic research…. the only stage that kills. The bulk goes to “education and awareness”. I’m well aware, thank you. I’m well aware the profit that’s made off of the corpses of my friends. I’m well aware this is a terminal disease. I’m well aware it’s NOT chronic. I’m well aware that when the treatment options run out… so does my hourglass with my grains of sand.

Susan G Komen uses the slogan “race for the cure”. But you’re not. You’re racing for more pink parties. Think about that.

Lets break down the metastatic research trials. There are three different kinds.

One is prevention.

Two is the mechanics of the disease.

And three is the treatment to stop the spread of the disease once it has already spread.

Door number three is what stage four thrivers need. But that door has to split the measly tiny amount of funds given to stage four , and ends up only getting 2%.

How do you feel about all that pink now?

Black would be better.

Until we fund research to save lives…. people will keep dying.

Don’t buy a pink shirt. Send a donation to Metavivor, which spends 100% of donations to research to save our lives.

Don’t buy a pink ribbon. Send a dollar to metavivor.

Don’t do a pink walk. Send your registration fee to metavivor and walk elsewhere and thank god you or someone you love haven’t been told you have stage four cancer.

My friend Lisa, who was killed by metastatic breast cancer, appeared on my Facebook wall yesterday. My heart leaped for a second, then I read it was her husband bill, letting us know he and the kids are doing their best to move on in this life without her.

That’s what I see on my wall.

Death notices, updates, scan day anxiety, and we all pull together and comment with prayers and encouragement. I’ve become the poster i used to look for.

“Keep hope! I’m on my seventh line! There’s more out there!”

DO pray for me.

DO pray for my family.

DO become an ally and spread awareness.

Thank you to everyone who has donated to the go fund me that the Riverhead Running Club set up for my family. All of the money is going to help us with the medical expenses…. because while everyone is buying pink crap that means nothing, I’m spending thousands on trying to actually live.

There is now enough to help us with four months. Now research needs to keep up.

I was afraid of speaking up and becoming a voice or face of stage four. I would look up who did that and then see their death notice. I was afraid if I spoke up, people would one day look me up and see the same.

But I’m not afraid of Voldemort anymore…. or saying the word metastatic.

I’m saying the name because my life depends on it.

Some day, yours might too.

So please, no pink. Become an ally of stage four. Even if you don’t have cancer, stand up for those who do.

Demand research, not ribbons.

And may we get the breakthrough we all so desperately need before we die.

In Jesus’s name, amen.

#pinkisnotacure

#stagefourneedsmore

#faithoverfearheal

#metup

#metavivor

#dontignorestagefour

#curekomen

#saytheword

#metastatic

#pinktobersucks

I’m posting the link again because people keep saying they can’t find it.

Thank you… every penny will go to my treatments.

https://www.gofundme.com/f/riverhead-run-iv-more?pc=fb_dn_postdonate_r&rcid=r01-15697675778-4b9a511475e0476d&utm_source=facebook&utm_medium=social&utm_campaign=fb_dn_postdonate_r

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