Pink is NOT a cure

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.

Planting seeds.

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.

Words matter.

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.

It… never…went…away.

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.

Overall survival.

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.

Period.

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.

Xoxo

Keri

Oh, Johnny Appleseed

I just spent an hour and a half typing my daily post furiously on my phone.

Then sent it to someone to publish.

Then deleted it.

Hopefully you’ll get to read it soon.

If not, I’ll publish it here.

As for me, I’m writing my second post of the day.

Alive.

Grateful.

Blessed.

Exhausted.

Yesterday, I took off my shoes and acted like Johnny Appleseed while my kinders giggled and belly laughed while I pretended to plant seeds and took a pot off my head to cook.

We made applesauce and ate it outside, just like Johnny.

We promised to be kind likeJohnny, who took the shirt off his back and wore a bag with holes cutout if someone else needed clothes.

The true story is he knew that law stated that if you planted fifty acres, you could claim it. So he planted fifty acres of apple trees all over and became wealthy.

But he also spread his faith, and lived by it.

A seed spreader.

He just used apple seeds instead of mustard seeds.

Then I came home and did a three hour interview with a reporter from the Patch, along with darla, from Kaits Angels.

Turns out not only did I receive profits from the yard sale, but the other recipient donated some of his profits.

On top of that…

The north fork breast health coalition finally found a way to give me their donation.

They give $1,000 grants to breast cancer patients. I’ve never applied. I’ve always felt there were women who could use it more than me, and I’m ok.

I never sent in the form.

My husband and dad have said women have told them , “TELL KERI TO SEND IN THE FORM!” . But part of me felt if I did, I would die.

Oh, the crazy cancer thoughts we have.

So they found the way around it , and added it to the Kaits Angels check.

I was telling the reporter that over the summer I listened to Oprah and her super soul sessions podcasts. I play the manifestation game of “I always get the best parking spot” whenever I go shopping. This summer I manifested money coming to ease us as we kept up with this treatment.

God provided in a big way, with both the Kaits Angels as well as the RunIVMore. I’m set now for seven months to pay for my supplements and complementary treatments.

Thank you all so much.

To be honest, I was manifesting and praying for $13,000 to go to Disney for Christmas… but all funds we get will go to my health. I’m now manifesting Disney just giving us a week or two. Disney is magic, and a dream is a wish your heart makes…

It can happen.

Today I’m hoping to start to make more ribbons for the RunIVMore on October 22. It’s an event to cheer on and support the Riverhead High Cross Country Girls team. It will be at Indian Island at 4:00. This team and coach has supported and loved our girl these past three years, and this race they will run is to raise awareness stage four research.

No pinkwashing.

Just Research.

I’ll be there with ribbons to hand out to spread awareness with the metavivor colors.

If anyone wants to help, I’ll be making them this afternoon around three or so at my house.

May today be beautiful and full of laughter and healing for everyone.

In Jesus’s name, amen.

Finding the Magic in Mums, Daisies and Applesauce

I’m up and in the detox bath.

I am feeling a bit better than last night, and today is applesauce day. It’s one of my favorite days of the year. If you ask my former students what their favorite lesson was, they might not remember.

But ask them about their favorite memories, and applesauce day always comes up. We can teach a lot through cooking, like measuring, solid to liquid, the five senses, math and counting, sink or float… and the hallway smells pretty darn good.

Kids always seem to try food when they’ve had a hand in cooking it too. I went and got organic apples yesterday so I fee good about what I’m feeding them. It’s going to be great.

Then?

I’ll come home and rest. My friend darla is coming over to present the proceeds from the Kait’s angels yard sale. A reporter from Suffolk Times called me for a follow up, and the poor woman had to hear me cry and break down again. She was the one who called and told me I was the recipient last month as I had no idea. Yesterday she told me the other recipient, Nick Coutts, has decided to give half of his gift over to me. He was in a horrible motorcycle accident and I remember praying so hard for him, but have never met him. He told the reporter he has been reading my

Blog and feels I need it more than him. It broke my heart to hear how someone who is also in a challenging period in their life feels I am worse off than him, as it hit me with the reality that he is right. But it also filled my heart that this young man has come through this challenging period with even more gratefulness and goodness.

Thank you, Nick.

The reporter and I also discussed the pinkwashing of October. I’ve been asked and this weekend I will be writing a guest column for Riverhead Local, as well as get interviewed by the riverhead patch. There is so much education that needs to be done about this month and how pink is not a cure. I’ll have three platforms to spread awareness about the failure of the awareness campaign and how enough is enough. We are all well aware that 116 women and men die ever die from stage four breast cancer. How about we spend money to cure or make it a chronic disease? Even the football teams get in on the act, with pink jerseys and goat yoga. How about every football player and team saves the money on the pink crap and goats and donates 2% to stage four research?

Is it that people want to LOOK like they care and are helping…. or do they REALLY want to make difference?

Reading the email from Donnie shook me a bit that the pain could be the tumor growing, but keep envisioning it is shrinking. Thursday will be a big day, as we will closely look at the tumor markers and pray they drop drastically. I spent the evening on the couch with Kasha the wonder dog, and rob and the kids around me.

I received a sweet email from Quinn’s teacher about what a kind boy he is. Quinn donated a bunch of books to his classroom and felt good doing it. That’s what we need to teach kids. Do good because it feels good and is the right thing… not because you can film it and get acclaim.

Morgan has gotten the theatre bug as well, and came into the car yesterday excited to be holding a script for Frozen. She will be a background actor, sing one or two songs, as well as be stage crew. Something to look forward to at the middle school in December.

Maddie got her camouflage cargo pants and went to a meeting about her ROTC weekend. She is becoming a leader and will train new recruits. We also signed her up for the SAT, and I still can’t believe my little girl is this big.

I’m hoping to have a crafting afternoon tomorrow and make metavivor ribbons and bead bracelets. I want to hand them out at the run and anywhere I go to raise awareness.

Think before you pink.

My life depends on it.

God knew I needed strength yesterday and sent me two people who hugged and hugged me in BJs. I never see these people out, and then there they were, one at checkout and one as I walked out. It’s all in God’s timing when you see someone if you think about it. One stop light… one more minute in an aisle… and you would never cross paths.

We started writing in kindergarten, and that’s a magical time if you can figure it out. I’ve decided to not teach the program, but instead…decided to teach the children. What a difference. We have to meet children where they are and know enough to say… this isn’t working. I think THIS will.

Then?

Watch the magic happen.

It’s beginning to feel a bit like fall, finally. My friend Emilie from Jamesport Greenhouses donated 24 mums for our kindergarten courtyard. I’m hoping to make it into a beautiful place for the kids to play and read and write. She also gave each child a Montauk daisy plant to take home and plant to make a memory with their family. You should have seen my kinders carrying their “Daisy Babies” home on the bus. A true Montauk parade. One mom sent me a video of her little girl telling her that you had to plant it that day and your dreams will come true.

Montauk daisy magic.

That’s what life is all about, if you think about it.

Finding the magic in every day makes even the hardest of moments more bearable.

So today, let’s all find some magic.

Mine will be in the applesauce, the flowers in our courtyard, the love from Darla and her angels that follow her everywhere, and in my heart.

In Jesus’a name, Amen.

Xoxo

Keri

Thank You, Good Morning America

Yesterday was interesting.

My flashlight shines on many things that are wrong lately.

Pinktober.

Forced vaccinations.

Our overcrowded schools and the issue of people just saying no with no other solution to overcrowding that will ease the congestion. NOW.

Here’s another.

We will have a MAJOR teacher shortage in five to ten years. How do I know?

Because on the day I returned to school after getting a chemo named “the red death”… my TA was pulled yet again to sub. It happens waaaaay more than you all think. Ever try to teach kindergarten with 24 kids of all different backgrounds and languages by yourself … while on the heaviest chemo they’ve got?

It’s exhausting…. and unfair.

I’m not blaming the school district at all. This is yet another crisis they are facing due to the state. I actually feel for the administration, as the state seems to be puking on more and more and saying “Good luck! You’re on your own!” All as the state accepts millions from vaccine companies, mandates ridiculous tests, and unfounded mandates.

You see, the state has made teaching a job no…one…wants. Young kids see the common core and the state testing and how teachers are treated and think…”No thanks! Not even summers off are worth that crap”.

When I was a young teacher starting out, getting a sub job was near impossible. The market was saturated, even here on the isolated north fork. Now? I rarely see young people subbing. Most of the time it’s retired people from other walks of life. I used to leave detailed plans with expectations of everything I taught being taught. Now?

Please make sure they eat breakfast, lunch, don’t get hurt, and get on the right bus.

That’s one of the reasons I dont want to take off more time that I need to. My TA can be my sub for a day here and there, but any longer they would need a replacement, and there is only one or two people I would choose. They’ve also changed the certification for teaching. I’m certified pre-k through sixth, and special ed K-12. Now? It’s birth through K, and 1-6. NO ONE is going for the pre-K certificate if they want to teach in elementary, which means when my generation of kindergarten certified teachers retire? Good luck finding certified K teachers.

You can’t run a smooth program when your assistants are pulled all the time. But we have no choice. So pray for Kindergarten teachers everywhere on days they are left by themselves… especially when the lessons plans call for glitter.

I didnt sleep at all last night, in case you can’t tell. The night sweats are horrendous, as well as this new fun cold and cough I seem to have picked up which I now have to watch carefully.

But here’s the beautiful part of the post.

I made it through the day yesterday.

I’m waking up alive today.

We gardened and pulled weeds and used farming tools and looked at animals we found.

We blew bubbles and used hula hoops and danced with ribbons. We laughed as we yelled “Go away, big green monster!” In English and Spanish… “Vayate!” is fun to yell.

I am getting a bunch of mums donated by a former parent. My friend and former parent Emelie has eight boys that went through our school and used to invite the entire school to do a field trip to Helen’s Farm Stand for corn maze, pumpkin picking and tractor fun. I miss the old days when we could have more than one field trip. Emelie is coming through big time and delivering mums to my school for us to plant and beautify our little home away from home. There are still beautiful people on this world, and they all seem to cross my path.

I brought my ribbons to school and started to hand them out. I’m going to run out, so we went to michaels and bought a bunch more supplies. If anyone is interested, I’ll do a craft party this weekend and we can make more.

Madison has her potluck dinner for ROTC last night and once again I’m amazed at the kids. This program is a gem in our district, and I wish more parents would utilize it.

Wish me luck today as I teach while sweating profusely and tired. I’m glad it’s a three day week. Donnie’s assistant Erin agrees it may be the tumor shrinking causing the pain, and will talk to him today.

My stage four thriver sisters have become very vocal and I’m so proud of them. However, this brings out the ugly. Many are being attacked for being truthful while being called depressing. Sorry if our life truth scares you, but 20-30% of you will be where I am. Fight now while you are healthy with us so when you end up here, there will be treatments to keep you alive. Some man on twitter said breast cancer is caused by abortions, implying its Gods will as payback.

Don’t worry, my thriver sister’s and I handed him his tin foil hat back…. and where to shove it.

But that’s what we face, while dying and fighting for our life.

Good morning America shocked me as they did a segment on male breast cancer. Beyoncé’s dad said he was just diagnosed and had a mastectomy. As he discussed how African American men are more likely

To get it, michale strahan said HIS brother had male breast cancer. Then? Robin Roberts said HER brother had it.

One segment opened many eyes yesterday. Hopefully Beyonce and GMA and her dad will pick this torch up and fight along with us.

Cure stage four, or make it chronic, and EVERYONE benefits. Keep your pink tutus and boxing gloves and goats and specialty drinks and pink shirts saying save the tatas…

And save our lives.

I’m up to get ready for the day.

I’m alive and grateful, even if I seem pissy.

Deep shallow breaths…

May this day bring more healing, more beauty, and more young people who want to become teachers.

In Jesus’s name, amen.

Xoxo

Keri

Starting superhero School

I’m off to work today.

What the WHAT?

Yup.

It’s good for my soul, and I GET to go to work. I may move a bit gingerly, not breathe as deep, and not give close face to face hugs while sitting down…

But I’ll softly talk. Read about telling a big green monster to go away, and discuss apples. I’ll sing a song about apples, count up to six, and maybe weed the garden if it isn’t too hot.

Yesterday was beautiful.

Danielle truly has a gift for massage and reflexology. I relaxed as much as i could while in pain and taking shallow breaths, and she worked her magic. I learned pressure points for my feet to help with liver pain. She said she felt me healing, and I stayed with that.

I came home to beautiful flowers from a woman I met through Facebook whose husband was in this arena with me for a while. She and her children have continued to live and laugh through their grief and sorrow, and are truly special humans.

I also received a bunch of ribbons in the metavivor colors from my friend Dienamarie. I’ll be handing them out and may run to michaels to make more. She also sent me a sparkly metavivor butterfly pin that I love. Pink, teal and green will be my colors this month.

The pinkwashing on the tv and in lesser stage groups is mortifying. All of my stage four groups are horrified with the glorification of the pink parties.A football team did goat yoga with survivors … the Philadelphia eagles. I commented and said we need research, not goats, yoga and pink merch. Tell me… which will help me more?

Another restaurant is marketing a pink drink. Save your money, spend the ten bucks and send it to metavivor. Me and our livers will thank you.

One woman said it’s like this big sparkly party that we weren’t invited to and will never get to go to because we were diagnosed stage four. Stop making cancer seem fun. “Hey! At least you get new boobs!” Actually, mine were never able to be amputated because it was “too late” for me. I’d give my boobs and my left arm to be cured.

Quinn went to a party and the mom tribe of friends were there for him. They all looked out for him and he had a great time. Mom tribes are amazing. If you don’t have one… count me in.

I got the email from my oncologist that perhaps this pain is the tumor shrinking.

Shrinkage.

I had visions of george costanza in my head screaming he was in the pool, and I thanked God for the pain. I’ll take it and breathe through it and use it to know where to send my prayers and energy.

Paula stopped by and dropped of my special juices. I’ve stayed away from a lot of friends the last month or two because it hasn’t been pretty at times here. Yesterday I looked a bit like a cancer patient, on the couch, heating pad on my liver, water nearby, my kids getting me what I needed as I was in the shallow area of breathing. I dont show you those pictures, because I want everyone when they visualize me to see me healthy. I even put on my ponytail extension yesterday I had purchased a month ago when I finally had enough hair for a nub. I wore it for a little while… then bought another wig on amazon. The juice was healing, as was sitting with a friend.

I’m in awe of the support that was given to my family with the running clubs go fund me. I now have five months worth of supplements and alternative therapies and special food we can get with the money.

Breathing room when you can’t take a deep breath means more than you know.

I’m going to start my “Superhero Teacher School” story today. I have never once told a child other than my own about the cancer. Some families in school told their children, but never me. I’ve been told the hair will fall out in a week or two, and I have this port that is pretty obvious on my chest.

So ….

The port is my magic flying button I press at night to help me fly and help keep the world safe at night.

Once I pass my flying test, they’ll start trying out superhero disguises. The magical hair fairies will come every night and try out different hair colors and styles to serve the assignment I’ve been given.

There was a movie about a boy and his dad in the concentration camps, and his dad made up stories and a game to not make it scary.

“Life is Beautiful”.

And it is.

It can be heartbreaking and hard and painful and full of sorrow.

But we can also lift our eyes and find beauty.

Today, May we all have a beautiful life… for years to come.

In Jesus’s name, amen.

Xoxo

Keri

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

The Bus and Freedom and Finishing the Hike

Remember how people always say you can get hit by a bus at any time when you tell them you’ve been given a terminal diagnosis?

Then you tell them the bus actually has your face on the side and follows you everywhere?

Well yesterday, the bus hit me. It wasn’t fatal, just a sideswipe, enough to knock me on my ass all day long and feel like I’d just been hit by a bus.

The nausea, even with the compazine and zofran, reminded me of when I was pregnant. Constant.

Horrible.

And the taste in my mouth makes me want to puke all day too. Nothing tastes good.and everything leaves an aftertaste.

Even water.

But I still drank all day like it was my job in between sleeping and sweating.

Did I mention bone pain? I’m now adding Claritin and Tylenol to my list to help with the bone pain that comes from the neulasta shot, which is forcing my baby white cells to mature quickly. You all know that commercial, where the people look peaceful because they didn’t have to go back to the hospital the day after chemo.

Those commercials all suck.

I turn them off whenever they come on.

We all kind of hibernated. Quinn is coming down with a cold, which could be dangerous for me. He took an hour long bath and slept with rob during some nap time we all took. The girls kept checking on me and getting me water or an apple as I needed it.

I caught quinn staring at me a lot, and I know they are all worried. I’m praying this lasts for a short stretch, then I bounce back. I managed to get down the herbal teas and pills as well. It’s hard on a good day.

Pretty brutal on a rough day.

I also spent time looking at the chemo hair loss pages on Instagram to prepare myself again. I never fully lost all of the hair last summer, but apparently this one is the one that leaves you bald like an egg. I’ve been following Selma Blair, and she is showing such bravery through her hair loss.

I’ve done it once, but that doesn’t mean it will be easier the second time.

I had really hoped to be better by today, as it’s an important day for Quinn’s Troop. Today they finish the hike that they couldn’t finish last year because of a drunk driver… who still hasn’t been brought to justice. This man started drinking at 9:30 am, had several people offer to drive him or take his keys, and he still got behind the wheel. He then hit several scouts who were well supervised and hiking on a trail. One of them, a twelve year old boy, was killed.

He looks so much like Quinn. As I’ve read his mother’s posts and looked at her flashbacks, they are almost like the same kid. I cannot grasp the grief of losing a child, but just the thought takes my breath away.

So today, one year later, they are finishing the hike. We have to see how Quinn is when he wakes up, but rob and madison plan on going, as she knows two of the other scouts who were also hit by the drunk. If you are free, go to shoreham wading river high school, make a donation to the Andrew McMorris Foundarion, and say a prayer for peace… and justice.

I am also praying for so many parents on their way to Albany today to fight for their child’s right to attend school. It’s not about vaccinations, people. There is a bill now in place to force gardisil on every teen. A flu shot on everyone. Albany and Cuomo received $48 million-the day before this past bill was passed. Truth. It’s about money. Plain and simple. And once the bill is passed, the company is no longer held accountable for any complications or injuries. Think about that. They are going to force you to get your child a shot and then not be held accountable for anything that comes of it. Money and power rule this world. These parents today are fighting for you all and the fight you will have in three months. They deserve our support. It’s about freedom.

Pray for my healing as well.

I’m hoping to start my comeback today, which means I’ll know how many days I have to take off per cycle. We are overwhelmed at the sharing of the fundraiser. We’ve got now three months of supplements and alternative treatments to help me. You have no idea how humbling and grateful we are.

May today bring healing to everyone who needs it.

In Jesus’s name, amen.

Xoxo

Keri