It’s been a while. I know.
So here is the update.
The CARIS testing came back and we met with my doctor Friday, as well as with Donnie Yance. We had a firm solid plan and we all felt confident and on the same page. I started tamoxifen to try and shut down the estrogen, fulvestrant to also address estrogen, and everolimus to address some mutation. I’ve got mouthwash to swish four times a day so I don’t het mouth sores.
Then the doctor from Boston called and said it was a dubious plan, and won’t work, and don’t waste time on it.
That single phone call sent me back into the dark place again.
Don’t ever tell words don’t have power.
So now it’s been days of no sleep and crying and emails and calls and praying all during the week before Christmas while teaching kindergarten and activities galore.
Yesterday I had parents in and had stations, all on about four hours of sleep, six total since Sunday.
Here is today’s Facebook post.
Thanks for checking in.
I’m still here.
At 3:30 I thought to myself, “Whew. Craft day is done. Success. My doctor was firm in the last email we stay the course and now have one more option should we need it. I’m off to Morgan’s volleyball game!”
Then I got my labwork. The tumor markers are creeping up again. I was single digit my last chemo session, and now it doubled. I quick researched my FSH and estrodial levels hormone values, and thank God I was next to my friend Amy who knows which numbers are liver panels. Those looked ok.
The MRI still hasn’t been approved by insurance so it’s tentatively scheduled for January 2. I really wanted it before the new year so i could close out this year with this whole issue done and start fresh.
Tabula rasa, blank slate.
Then I got Donnies thoughts and felt better. Both brilliant minds used almost same terms in sticking with a proven therapy over an unproven one.
The phone rang and the Boston doctor called. She immediately apologized to rob for upsetting me. I cant listen to her voice anymore. She has the sweetest tone, and hearing your death approaching in a sweet voice doesn’t make it any easier. She said my doctor agreed to change my course and stop tamoxifen. That was totally news to us.
She said again there are things coming out all the time and down the pike, and if I end up in her hospital someday, she would be more than happy to set me up with someone else if I am not willing to see her again.
I’ll see her in forty years.
So another sleepless night. Is tamoxifen stopping?
My doctor sent me an email stating she spoke to the Boston doctor, she seems very nice, she was fine with the plan, even had some future options, and also thinks we should stay with the MTor inhibitor until we see if it is working. What the heck?
So once again I was up all night, emailing questions.
That leaves me with about four hours of sleep, jus enough so I’m bright eyed and bushy tailed for a trip to the high school I’ve organized for the entire kindergarten called “Merry Monsters”.
We created monsters, sent them to the high school, art classes sewed them to life, and today the chamber orchestra will play holiday songs as we receive the merry monster gift.
Remember the book, “Where the Wild Things Are?”
I feel like Max. I want to go to my room and sail away, have a wild rumpus, and forget about everything for a while.
(Although, I’ve often wondered about his mom. While he is off having this wild adventure, she is probably wringing her hands questioning her actions and words.)
I want to sail away and have a big glass of wine, (I cant because the interaction with the mouthswish is horrific), eat
cookies and cake, dance, even roar and gnash my teeth.
Be the King of all wild things and no cares in the world. See my crown? I’m the daughter of a king. Let me straighten it a bit.
I cant stay on the island.
My sail goes back up and back adrift, in uncertain seas that have been throwing me around for two years, and I’ve been in a storm for weeks.
I want to take a break.
But I can’t. That’s not how stage four works.
I’m not max. I’m the mom, wringing her hands and questioning if every step she takes and word she says is the right one.
Do you believe in angels?
I do, because I’m surrounded by them.
One angels name is Paula. She brought me warm food called falafel for lunch and fresh juices because she knows I’m not sleeping and barely hanging on here. She ordered me special miso soup too, non gmo and organic.
Another is Ali Katz, who texted me last night and made me a vegan chili.
Another is my sister Jill, who is my opposite but loves me
Fiercely and can make me laugh with a single meme.
My friend amy who tells me in an auditorium things I need to hear about believing my intuition and looking at labs in a gym.
My brothers who keep texting me.
My friends at work who hug me.
My co-teacher Penny who I know I can make nuts and pulls together everything I need for a craft day effortlessly.
Donnie and his assistant erin, who released a blog about God.
My maggie, who sat and stuffed sock snowmen with me and sent me pictures of miso soup.
This is a season of miracles. I keep finding people who believe in Hope, deal in faith and walk in love.
I keep praying to God to take this away.
Jesus, heal me.
You can do anything! If you love me, you’ll do it.
Instead, they’ve given me more.
Grace doesn’t mean everything will be easy. It’s a net that God throws to us when we are in the storm, frantically bailing out water.
It catches things, shields us, scoops us up when we fall. He is grace and mercy and the net.
God lives in spirit. His promise is always there. Like the stars in the sky.
The stars are still there, even when you can’t see them.
So I continue to believe.
Believe anything can happen.
Believe that when I see madame Swoosh today for the third time this trip, a miracle happens.
Keep working on letting go of anger and forgiveness. Anger is like playing hot potato with a broken heart. I’m done passing the hot potato and not playing anymore. I’m forgiving the doctor from Boston but not going to play with her anymore…at least for a long time.
Today I pray for a safe trip for our kinders, the high school students enjoy the magic and remember the feeling of the season they had when they were five, I get a final answer on my treatment and an mri scheduled sooner, and Madame Swoosh gives me energy so I can sleep tonight.
Jesus. Take it away.
Take it away.
Take it away.
I am healed
Let the wild rumpus begin.
In Jesus’s name, amen.
2 thoughts on “Merry Monster”
May you find strength, hope and peace this Christmas season. Bless your family and all those who help you on this journey. I pray for you each night , and will add to those prayers you get a good night’s sleep.
PS I live in Nassau County if there is anything I can do to help.
You have blessed us with your unwavering belief in miracles, angels and the unconditional love Jesus has for all of us, and I thank you so very much for this gift. You will be healed, Be kind to yourself this time of year. You have worked so hard and now need to breathe and catch up on your sleep.
You are loved by all of us and we will continue to pray for your renewed good health and peace.
Merry Christmas to you and your family ❤️❤️❤️❤️
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