I bet that headline for your attention.
I dont even like writing it because words are powerful. But let me explain that hashtag…here is my Facebook post today.
And so it begins.
Hand foot syndrome.
I was hoping it was just blisters from walking three miles day lately, but after posting in the private support groups…
This are the letters that stand for hand foot syndrome in the groups.
I say it stands for holy f*cking sh*t.
There are blisters on the sides of my big toes and feet, my feet and hands are turning a red color and tingling, and they look swollen like they are sausages ready to pop out of their casing.
So what do I do?
I just got a special cream from Donnie Yance that I slathered all over my feet and hands. (And no, it doesn’t smell like lavender. )Some of the women suggested I put band aids over the blisters to help them stay safe.
I’m going to up my water intake, and maybe take more detox baths. The last thing you want to do in a 100 degree weather is take a bath, right? But I’ve got to get the toxic chemicals out.
Instead of “sweating to the oldies”, I’m “sweating to get old”.
I’m still going to walk, because my skin is the biggest organ. Sweating is detoxing, so I’ll throw on extra socks and sweat away as I walk and listen to podcasts. I’m finding I love it. Music is ok to listen to, but man… Oprah has some amazing podcasts that are about thirty minutes long. I get inspired and calm and find clarity from some awesome spiritual people who have done the work. You may be walking by yourself, but you’re not alone. Kris Carr has a good one that felt like she was telling my story. I also see people I know every day as I walk. They drive by and honk or wave. I feel like the “Keri is walking for her life”’parade and I wave back. I used to be self conscious. Now I’ll get up, throw on a hat, not even worry about making my eyebrows fleek, and hit the road. I love this body, fifty extra pounds and blisters and cancer and all. This body is still working for me, and has been the “home of my soul” for almost 37 years.
Thank you, body.
Keep f*cking going.
I love you.
You’re the best!
Now let’s see if we can clear out the cancer.
I have three days left of chemo for this cycle. I can still walk and will be more mindful to put my feet up whenever I can to reduce swelling. This is where I learn to start to plan my day out better.
When can I sit and when can I stand.
According to the ladies on the group, every cycle is different. I’ll see what happens the next three days. Then next week I see my oncologist and if we have to lower the dose or change the frequency from two weeks on and one week off to one week on and one week off, then we will. I am on a really high dose right now because of all the pesky cancer. Not many women are on 4,000 mg in my groups. Most are 2,000.
That always take my breath when I see how much lower their doses are.
When you are diagnosed with stage four cancer, it’s like a trap door has opened up and you freefall. The thing is, there is no bottom to land on until you hit the coffin. Some women fall a few months, others fall for years.
But we are all falling… all the time… down, down, down.
The choice is where do we look as we fall.
Looking down paralyzes you. All you see is darkness. Then you can’t breathe and wonder how long the scary fall will be, and as scary as is it is, you don’t want it to end.
So you look up.
You look for the light that is still there, sometimes bright and sometimes small.
You keep looking for the rope that will drop for you to hold onto or the ledge that you can rest upon for a little while until it gives way. You think about the ladder that is trying to be built that might someday help you climb up out of the hole and then you can close the trapdoor forever. You pray the ladder gets built quickly because the ledge is small and cracking and your hands and feet hurt and the rope burns are stinging.
That’s stage four.
MetUp is an advocacy group that ran a social media blitz yesterday. Deadline2020 is a group run by the NBCC (National Breast Care Coalition) that’s states they are dedicated to ending breast cancer by January 1, 2020. But… they dont have Metavivor or MetUp representing stage four patients on their board. Not only is stage four considered the pink elephant in the room, they won’t even let the elephant IN the room.
Pink is NOT enough.
The bulk of the funding goes to to telling women to eat right, exercise, and get mammograms. ONLY two to five percent of what is raised by all that Pink… that freaking pink… goes to research for metastatic breast cancer.
The only stage that kills.
So while everyone is all pink, pink, pink, save the tatas, squish those boobies…
They all ignore stage four because we are the scary women already falling down the hole from the trap door that suddenly opened up and swallowed us whole, dragging our families and friends over to the edge to do their best to give support, and we are the women the lesser stages never want to be.
So no one looks at us.
No one listens.
We just hear other women from their own trapdoor hole in their freefalls yelling tips and tricks on branches that hurt as your fall down your own hole and how to make it suck less.
But here’s the thing.
Research has started to extend lives. Where women used to get diagnosed then spend the little time left preparing to die, with short falls down the hole. women are now living longer and speaking up.
Raising our voices and getting loud.
Well behaved women rarely make history, right?
I liken it to the AIDS movement. It was when the AIDS patients started shouting and yelling that they were heard.
Breast cancer patients are usually women, and in the past, older women. Moms, grandmas… women who would rather go and choke to death in a restroom than make a scene in public and ask for help.
It’s men AND women. Men can get breast cancer too. Women are being diagnosed younger and younger.
It’s not just breast cancer either.
Lung cancer, prostate, bladder, brain…
We are all fighting for our lives.
But stage four is ignored.
So yesterday we were loud, and told deadline2020 that without adding metavivor or MetUp representatives to their board, they should switch their name to deadby2020. The women who initially came up with this idea?
So we pick up the flag and carry on down the field, making noise and not making nice, while riding on our elephants and saying, “SEE US! HEAR US!! HELP US!”
Screw the pink.
Get color blind and begin to see all the colors.
*stepping off soapbox*
I had a lovely night despite the HFS and threw a party for my dad. (Sometimes the trap door has an elevator for people to come down and visit and remind you of life before floor dropped out from under you). We had a beautiful night and the kids all had fun. Birthdays are important.
Each one I get to have will be cherished by me.
May I have forty more.
In Jesus’s name, amen.