What did I do during Pinktober, the worst month of the year?
Well, yesterday in my kindergarten class, one week after getting Adriomycin and Cytoxin for the stage four breast cancer that I was told would kill me in weeks or months… three years ago….I took my shoes off and walked around in my bare feet, pretending to stop, plant apple seeds, took a paper pot off my head, pretended to cook a meal and eat it, wash the pot, put it back on my head, pretended to sleep under the stars, pretended to take off my shirt and give it to someone who needed it, then pretended to cut holes in a bag and use it as a shirt.
Then I kept walking through pretend rain, snow, over rocks, and in the hot sun… all while barefoot and as the classroom filled with the aroma of fresh organic applesauce and laughter and giggles of twenty four little children.
I even did it twice, so both of my new principals could see. I figure better let them see the crazy real quick, so no surprises during observations.
Then we ate the applesauce outside just like the man we learned about.
Do you know why I took off my shoes and did all of that in my bare feet?
Because I was telling the true story of the life of a man who lived over two hundred years ago. Think about that. In a time of no tv or news that traveled in a nano second… we still talk about him.
John Chapman… Johnny Appleseed.
By living his life, planting orchards of fifty acres at a time, planting trees that grew apples for cider, and spreading his faith along with his seeds, we still tell his story today.
Sometimes we don’t get to see the fruits of our labor.
That’s like the metastatic patients.
We fight and fight for fair funding, knowing that we will probably die before the research comes that we need… but we fight for the future men and women who will be told the same words that rocked our world and stole our lives. We are planting seeds every time we rail and shout against the pinkwashing, the parties, the merchandise that doesn’t save lives. We are hoping to shame the companies that make a profit off the corpses of our dead friends, so they actually use the money where it will help…. research to prevent the metastatic spread of cancer.
That’s why I protested the Susan G Komen “Race for the Cure” in NYC last month. Go ahead and look up their salaries. See how much they spend on “the fixation and awareness”, when everyone I know is WELL aware of breast cancer. Then see how much they spend on stage four research, the ONLY place where your money will make a difference.
Let me save you a second.
In 2011, the CEO of Komen made over $400,000…. off pulling the heartstrings of the families who now had corpses of dead stage four patients instead of living and thriving family members.
50% goes to “education and awareness”. How many of you don’t know about pink ribbons? Feel educated enough?
A measly 19% goes to research. Only about 2% of that goes to the research that matters… preventing the spread of metastasis.
Feel good about pink now, Susan. Look up the hashtag #curekomen, and learn about the pinkwashing they’ve done. Yes, they’ve done some good. But until people stop dying… it’s not nearly enough. Flip the percent, give fifty to research and 19 to awareness.
That’s why I support Metavivor. 100% goes to stage four research. Don’t buy pink crap this month. Donate to metavivor.
We cringe when people say someone “lost the battle” when they die, and shout against media when they say someone died from “complications” from breast cancer.
Don’t make the person who died a loser. That makes it seems like they didn’t fight hard enough. Would you say that about a diabetic, a heart attack victim, a stroke victim, a car crash victim? Then don’t say it about cancer victims. They were murdered by cancer, and companies were complicit as they wore their pink shirts that said “Save the tatas”.
Dont say complication killed people. Metastatic cancer did.
Here’s a fun fact for you. Do you know data collecting stops of people with metastatic breast cancer who die after five years? They skew the data and stop counting us at five years and one day. Which is why so many women are shocked when they were told they were cured at five years, then seven years… ten years… twenty years… and suddenly they are metastatic, then die in three years.
Everyone has cancer stem cells. It’s just that you are lucky enough your immune system is able to keep it in check so it doesn’t grow big enough to be seen.
If you die in the first five years of diagnosis, they count your death. If you die the day after five years… your death doesn’t count in the data. Your life doesn’t count to them.
The data is skewed.
Doctors need to talk to early stagers about metastatic breast cancer recurrence. Yes, I know it’s scary. But have the talk and prepare them for what’s possible. Get them aware, so maybe they will fight for their sisters and brothers who are in the stage four fighting arena while they pray it’s never them. Talking to someone beforehand is like the flight attendants telling you the emergency procedure while you are still on the ground. But they don’t don’t do the scary talk, they say “You are cured!” and so when they are told it’s metastatic years later , it’s like the flight attendants screaming about the life preservers under the seat and the oxygen masks dropping down while the plane is doing a nosedive and everyone around you is in shock and crying and screaming they don’t want to die.
YOU need to be aware.
YOU have cancer cells right now.
Will you continue to pretend it will never be you? Look how that worked out for me, even when my dad had five primary cancers, his brother died of metastatic lung cancer, and their mom died of metastic cancer. My dad survived because it didn’t metastasize.
Mine did from the get go.
I put my head on the ground and didn’t want to think about it. So did my dads doctors. So did every one of my doctors when I told them family history. NOT ONE suggested I go for genetic testing.
Had that happened, I would have amputated my breasts in a heartbeat. And yes, it’s an amputation. If you remover a part of someone’s body, it’s an amputation. I’m disgusted when people are like…
“Hey! At least you get new boobs!”
The sexualization of breast cancer is horrible. Would you ever tell an amputee who lost their arm, “Hey! At least you get a shiny prosthesis!” Try telling that to a sarcoma patient.
Early detection does…not..save.. lives. It simply tells you earlier you have cancer. Until the research catches up, you’ll still die from it. Researchers are thrilled with data that shows progression free survival. PFS. “Patients showed ten months PFS over the four month PFS patients in the placebo arm.”
But we want the OS.
Where the new treatment helps us live LONGER. The OS hasn’t budged in thirty years. How’s that war on cancer working out for you, politicians?
They all show up in their pink ties and shirts at events in October, then go back and don’t do a dam thing. They buddy up with their pharma friends and make deals, but for the people who voted them in?
It’s all a pink show.
Ask yourself before you buy a pink towel or mug or shirt, or register for a race… “Will this save lives? Will the proceeds go to stage four research, when stage four is the only stage that kills?”
And it does kill.
116 men and women a day.
I’ve had three women who I met in chat groups die in the past year.
Meg, Alycia, Leila.
They all became friends who I prayed with and dreamed of growing old and seeing children grow up.
Then they all died.
My friend Lisa from my college days held my hand and got me through my early diagnosis days.
She died in July. It came back quickly and then she was gone.
Losing a friend is devastating.
Losing four in a year who were your secret confidants is traumatic.
Losing them all to the same disease you’ve been told will steal your life within three years if you make it that long keeps you up at night, crying to your husband you just want to grow old with him and see your children grow up.
Pink doesn’t save lives.
Awareness doesn’t save lives.
Research will save lives.
I actually went for a baseline mammogram at forty, then was told come back in five years, even though I was told I had dense breasts. What they SHOULD have done is said, “You have dense breasts, so you should get a mammogram AND a sonogram every year. Come back next year.” Instead, two and a half years later, I felt a lump, and the day after my birthday I was told it was cancer. The week before Christmas, only because I demanded a pet scan and biopsy, I was told it was already stage four.
I was just forty three years old.
I am friends with a girl who was told she was stage four and started chemo the day of her high school graduation. Brittney Beadle is one of my heroes.
Nalie Agustin and Stephanie Seban are also women who were diagnosed at a young age and speaking out.
Anne Fonfa is a force with her Annie Appleseed foundation. She is the modern day Jonny Appleseed, spreading awareness of complementary therapies.
The thing with stage four is by the time you settle down after the shock, start life changing and debilitating treatments, lose your hair, find out the truth, get angry and become an advocate then pick up the torch… you die soon after. Then another stage four person comes and honors you by picking up your torch and becomes your voice, until they die.
It’s how the cycle is now.
We hope to become the AIDS activists of the eighties. Be loud. Get attention.
Then save our lives.
All the while, we’ve got everyone else shouting at you what THEY think will help. Suddenly everyone is an expert and pushes their thoughts on how you should save your life. “Chemo kills!!! Don’t do chemo!!!”
“They are hiding the cure!!” Listen.. dead patients don’t make the pharmaceutical companies money.
Faith helps me get through my days. I have a new study bible and am underlining things that show me how much I am loved. I pray all the time and have my own relationship with Jesus. I believe God did not give me this cancer… but he is sending me so many people to help me through. But then I’ve got the “Christians” judging how I’m living and dealing and telling me I’m leading people astray by going to yoga, reiki, reading the works of Buddha which bring peace, seeing a Frenchwoman who does energy work, and talking with a medium who gives me such peace. So not only am I trying to find ways to keep breathing, I’m being told I’m going to hell.
News flash, judgy Christians.
Jesus is the only judge I’m concerned about, and he loves me. “Jesus loves me this I know, for the Bible tells me so.”
I’m going to heaven, and Jesus will be there to greet me and hold me and tell me He loves me, and that I am good daughter and did the best I could, and He is proud of me.
But not for forty years or so, I hope.
I’ll keep my dream team of my amazing oncologist from Stony Brook who continues to give me hope while being honest, my Chinese herbalist who sends me packets of brown liquid that tastes like mud but keeps my immune system strong, Donnie Yance and the Mederi clinic is Ashland, Oregon, which sends me nutrition, teas, lotions and supplements, and has me take seventy something pills a day. I’ll keep my French energy healer, Odile, who swooshes and tells me how she doesn’t know how I am still alive because of all the cancer she sees, but I am strong and not dying. My reflexologist, at the Peaceful Scorpion, who rubs my feet, massages my body and tells me pressure points to alleviate liver pain. The Giving Room and Paula, who makes organic juices and is the sweetest yoga community you will ever find. Chaga island, which gives me chaga mushroom from faraway forests to make teas with. My friend sarah who is in charge of a meal train so my husband has one less thing to think about.
My friends who organize fundraisers even though I am so uncomfortable about it. I now have enough funds that I don’t have to worry for another seven months on how to pay for everything I’m doing. My friends and my family who don’t say, “Let us know if you need anything…” , which means we’ll but puts pressure on the patient to have to actually ASK, but people who actually help, by loving my family and just showing up. My school district, which supports me with my
colleagues who love and keep eyes on my kids and me and makes sure we are ok.Jesus, who is with me all the time, and I can just say His name and feel better.
My dream team.
So… this is why I tell my story over and over.
Johnny Chapman planted seeds and he is still talked about hundreds of years later.
Every post of mine is a seed.
Every blog post on my website, (www.faithoverfearheal.com) , is a seed for people who are being told today about the cancer in their bodies that has woken up and spread. Follow the seeds, or don’t. Your choice, and your own path.
No judgement, just love.
Maybe someday in medical schools, doctors will learn about herbs and nutrition and ways to help patients live longer lives and thrive through a cancer diagnosis, just like now with HIV. Women and men will be told they have breast cancer, and then be told of a woman who used to take off her shoes on applesauce day in her kindergarten class while thriving with metastatic breast cancer and taking the harshest chemo they have, then continued to live a long life for years and years, and died in her sleep at 94 years old, after having changed the face of cancer treatment.
May it be so.
In Jesus’s name, amen.