It’s been one blow after another lately in the arena.
Meg, who loved rainbows and messaged me about God, passed away last year. Every rainbow I see I hear her words, “God’s promise”.
Alycia, who traveled to meet my herbalist, planned a road trip with her children that never happened, and became my first soul sister, passed away this spring.
Leila, my west coast soul sister, force advocate for her little boy with Down’s syndrome and light of grace and grit, passed away two weeks ago. I have her key around my neck and can now explain to people what it means without crying.
Yesterday I saw my daughter’s orthodontist post something that took my breath. I had been invited to the North Fork Breast Health Coalition Gala in April and met an amazing and beautiful young woman. She was a keynote speaker, and was as gorgeous as she was strong. I went up to her and we spoke, and I was struck with how young she was. She worked at my daughters orthodontist office apparently. Yesterday, they posted she died.
Four months after I met her and she was so strong and you wouldn’t even know she had stage four breast cancer.
That’s how quick things can change.
This morning my dear Sophie Sabbage, author of “The Cancer Whisperer” and “Lifeshocks” has announced that her brain tumors are back for the fourth time. Sophie was a beacon of hope to Alycia, and Alycia and I would have a little book club as we discussed Sophie’s grace. Sophie gave a beautiful TED talk, and today in England they have a full article on her.
Reading about Nikki passing yesterday was a life shock. It reminded me how quickly things can go wrong. It also reminded me to make every moment count.
Rob and I walked three miles early in the morning, as the research has showed how important exercise is to help prolong stage four patient lives. Then we all got to work. Rob worked on the outside of the house, and the kids and I straightened up the inside a bit.
I made my smoothie from Donnie Yance and made a Facebook live video. I’ve got many cancer patients following me on Facebook. If I can share how sea vegetables, whey protein, mushroom powder, fruit extract, and coconut along with some other things can help fight cancer, I will.
Then, for the first time all summer, around three in the afternoon, we all went into the pool as a family. I had to be careful of the air quality and the heat, so we waited until later in the day. My brother in law brought my sisters girls over to cool down, and we all swam and floated for a long time with the “sprites”. We were supposed to go to a party but I was too tired to make the trip. (Another time, Leuly!❤️)
By 7:00 we realized we had no food for dinner, so we threw the kids in the car and went to dinner in Greenport. It was beautiful, we ate on a rooftop outdoor patio as the sun set, then Quinn wanted to ride the carousel. All three kids went on the carousel, and as they waited in line, I listened to the music, held robs hand and cried.
I want to live, damnit.
I want Meg and Alycia and Leila to be here to see their children grow up.
I want sophie and all my friends in this arena with me to live and not have to breathe underwater every damn day as we move from treatment to treatment while still doing our best to live our lives and hold on to every moment while not questioning our past or fearing our future.
I want scientists and politicians to find the funding to get the breakthrough needed for us all. I saw footage of the Apollo mission and fifty years ago they were smart enough to figure out how to monitor a mans heart as he took his first step on the moon in outer space. The steps we’ve made technologically since then are awe inspiring. How can we not have figured this cancer crap out yet so that women and men aren’t dying from it every single day anymore?
Despite the tone, I’m doing ok right now.
I’ve started week two of cycle two of this chemo. Either the CEA tumor marker is a really bad sign, a mistake, or a good sign that it’s dying off and cancer cells are floating around. In two weeks I go and get it tested again.
In the meantime, I breathe. The extreme fatigue that made me cry it wa so bad is gone. The other night we had a fire in the fire pit, and rob, Quinn and I laid on our backs with our feet dangling in the pool as we looked at the stars and the sparks floating up towards them. I held Quinn’s hand and told him to always remember that moment. It’s a summer memory in the making that he can tuck in his heart and hold onto forever.
As the kids got on the carousel last night, I took pictures of them. These three children fill my heart so much sometimes it overflows. Many of you don’t know them in “real life”, but those who do, know they are as kind, smart, and loving as I write about here. I’ve been an overprotective mom, and that’s ok. They’ve proven to be strong the last two years, and have faced the worst this world can throw at you. They continue to walk with humor and love and grace and grit and gratitude.
Rob held my hand as I kept wiping away my tears so the kids wouldn’t see as they got on the carousel and said I’m going to be ok because we have no other choice.
And we don’t.
His faith in my future keeps me breathing.
I was up a lot last night, researching new trials and therapies. I searched the comments of many groups looking for the women who posted they’ve been on this therapy for two to three years for hope. My last four therapies lasted three months only because that’s how long it takes to see if it’s working. I really need this one to work. Another friend, Lisa, just shared she is on her eleventh therapy in four years and research shows that the faster and more therapies you fail the worse the prognosis.
But a prognosis is not a fact, and we are all a statistic of one.
After the carousel, we walked by where I used to bartend in Greenport. I was the very first bartender at Crabby Jerry’s then went to the big time at Claudio’s. I spent a few summers working my butt off as a bartender before getting my public school teaching job. It was run by a family that I love, and we were all a family. My bouncer’s daughter is my daughters best friend. I taught the nieces and nephews of my fellow bartenders, and my chef and waitress have kids and nieces who I also taught and have grown up with my kids.
The new owners have changed it drastically, and it’s now an upscale modern looking corporate type of of feel restaurant and bar. The boats that used to park there when i was bar tending were day boats and families. Now? There are multi-million dollar yachts surrounding it.
We walked by and played the “which yacht would you own” game. If every yacht owner would donate to metavivor, I bet we could fund three trials. But instead women and men in the arena are doing walks and have kids selling lemonade to save their lives as they breathe while treading water and watch the yachts float on by.
I pretend the yacht owners come out of their yachts, hear my story, and donate millions to research. That’s the game I play quietly in my head.
As we drove home, I thanked the kids for the summer memory. It felt like was had traveled to some far off place and we were only twenty five minutes or so away from home. We promised we would go back, as there are so many new restaurants and stores. I love the little restaurants, and want to eat at the main lucharitos one day. I love the owner, and he is one of the small business owners who walks the walk. Support the small businesses and help the local families when you head out east.
Today is another hot one, and I have to be careful about the heat. I’m trying to drink a lot of water to stay hydrated, and stay cool as much as I can.
Today I praying for the family of Nikki, and all of her friends.
I’m praying for Johanna, who has now had her 101st brain surgery in her 23 years of life. It’s has been hard and painful. Eileen, her mom, is sharing information and pictures and we are holding them all in our hearts.
I’m praying and doing my best to imagine my body is healed and healthy, and will be here helping me to live and thrive for many more years, and that the Chinese herbs and supplements and sea vegetable and mushroom smoothies and three mile walks will help my body stay stronger and that’s what will make me different than what’s happened to my friends, so it can send the cancer cells gently off into the night, scattered like the stars in the sky, never to form another tumor again.
I’m praying for my children to continue to thrive. Madison was talking to us about maybe becoming a screenwriter, and we looked at some colleges online while at dinner. All of our money is going to my life, and there is no college fund. I’m praying for them to all get scholarships so they can go wherever they want to be whatever they want.
May today be a day where we all move a bit slower and see a little more clearly how precious our lives are. Hold onto it with both hands, and make summer memories today. A walk on the beach, laying down on the grass and looking at clouds, read a good book, sing or dance.
Life is for living.
Live a good one today.
In Jesus’s name, amen.