I’m still here.
Turned 48 yesterday.
Still teaching full time, virtually, out of a small room in my house with puppets and 27 amazing little souls that keep me laughing all day long.
I almost died this year. But I didn’t.
A worldwide pandemic, my own children pivoting every day between virtual and hybrid learning in a district with a failed budget is hard. Throw in a senior who has no senior year memories now while trying to apply to colleges… it’s hard.
I’ve had so many more people sent to me it’s a bit overwhelming and I stopped blogging. I hope none of you went searching obituaries. If you miss me, think of me living and dancing. I found tik tok, and now do tik tok videos during chemo. My nurses think I’m nuts, but sometimes they dance with me.
Even when it’s hard, we keep dancing.
My husband …
All of us.
Someone asked me the secret to not going down the wormhole all the time after a terminal diagnosis.
Here’s the secret.
Some days you are the starfish, gasping for air, having been suddenly thrown out of your life and thinking death is a breath away.
Some days, you are the person walking the beach, seeing the thousands of starfish, knowing you can’t save them all, but even just picking up one, putting them back in the water and whispering, “Keep breathing, keep swimming…” makes a difference.
When I got the call four years ago today, I was totally the starfish. I didnt even know it was stage four, just the thought of chemo and surgery and radiation had me sobbing all night for weeks once we put the kids to bed. Once we heard the words from the first doctor that it was terminal, and time was now measured in weeks or months, a year or two if I was lucky, there was no peace.
But then people started coming… or I went and found them.
People who told their story, and by telling their story, they gave me hope.
It wasn’t easy to find them. Many want to forget about the issue, and by taking about it, it stays in the mind.
But I found them.
Ann Fonfa was my first lighthouse. The annie Appleseed foundation is amazing, and she is amazing, and because of her and my miracle maggie, I still drink three packs a day of brown muddy tasting Chinese herbs from my secret chinese herbalist, one of the most brilliant herbalists known in the world. Dr Snuffolufogus as I call him, as we meet in the alley like big bird and snuffy in Sesame Street.
Rick Shapiro is another. He went out and wrote a book called Hope Never Dies, and it’s full of people living for years and years with a terminal diagnosis.
The Mederi center and Donnie yance, one of the most brilliant minds you’ll ever find, who have always kept pushing me and educating me on supplements, chemo, targeted therapies.
All of my nurses and medical team who never gave up on me. This spring I had doctor after doctor in the hospital look at me with the death look. When my own doctor came in the fourth day, I cried and told her about the looks. She said if she didn’t know me, she would also feel death was coming, but she knows me, and has faith I would somehow make it through.
I’m the only one if her patients to ever live through that crisis.
I’ve made amazing friends, women I’ve never met… and then spent nights crying when they passed away, full of grief at the loss, fear I would be next, and guilt it was them and their children who lost a mom instead of me.
Stage four survivors like me who advocate carry an invisible backpack all the time, and inside we hold the memories of the ones we’ve lost, as we pick up their flame and keep going.
My backpack is so heavy some days.
I get whispers from God. Either you think I am a whack job or you believe, and I’m finally at the point in my life where I dont care. Another gift from age and a terminal diagnosis.
I got a big one yesterday.
It literally woke me up on my birthday. I had someone sent to me recently who was an early stage breast cancer survivor who has suddenly found herself in stage four land. She has been waiting and waiting for a clinical trial to start, and I get the anxiousness to just begin, yet it’s an unknown. I kept seeing her face and a clip from a kelly Clarkson show. The clip was the man who invented herceptin and perjeta twenty five years ago. Then? They had a woman stand up in the audience and introduce herself. She was told she had stage four breast cancer, mets all over the liver, and go home to make final preparations. She found this trial… and she is still kicking it twenty five years later.
That’s the thing.
We never ever know what coming, and we tend to believe the worst is on its way.
What kind of life would that woman have lived if she spent twenty five years of this amazing gift crying every day it would stop working?
I was busy yesterday . Literally nauseas and live all day long, but that clip kept coming to my mind and her face, so during my fifteen minute break I sent it to this new friend/stranger a month ago that I get God whispers and here you go.
She literally just heard.
The trial is beginning.
There you go.
Listen, it’s not easy. On top of stage four denovo, I’ve got a rare mutation which makes me a unicorn in the cancer world. I cant have radiation. I’ve had multiple biopsies, appendix removed, spent weeks in the hospital, almost died twice, been on eleven therapies, lost my hair three times.
But I work every day to not waste a single day.
I’m on a new drug. I mean… just approved. I’m following scientists in twitter and also clinical trial phase one patients who are sharing their story. One woman is now on treatment 38 of a once every three week cycle. Why can’t that be me? And why can’t I become like the twenty five year survivor from kelly Clarksons show?
That’s how you keep going. And if you find yourself gasping for air, stranded in the beach, hang on. Look for the ones who will run to you and put you back in the water.
Just keep swimming.
Thank you everyone for the beautiful birthday I had yesterday. You ALL helped me get here, by throwing me back in the water every day by praying for me, sending me love, and believing in the hope that this story will go on for a long time.
Here to many more years of believing the good story is coming, and that no matter what, we are going to be ok.
In Jesus’s name, amen.