Cue the 2:30 am nightmares.
I was not expecting yesterday at all.
Confident little old me was like, “Easy peasy, Lemon squeezy, flush my port, stick my stomach, tell me my labs are good, I’ve got an open house to do!”
God said, “Here’s a new mountain for you to climb, but first go down in the valley.”
I taught in the morning, then ran to the hospital. It’s like a family there, and after three years, I get lots of hugs from everyone. I saw Pushpa from my clinical trials days last year and we caught up and hugged. I was like, “Love you, but hope to never need to see you again for cancer!”
The port worked great, I was injected in the belly with xgeva, then we waited an hour and a half for the 2:30 appointment. We got called in at 3:15, then waited another hour to see the doctor.
When we saw the tumor marker number go up, my heart sank. My doctor walked in serious, and I’ve seen that face before.
That’s when I go out of body.
She said she wants me to stop the chemo, because I’ll probably be changing treatments again. I said “Fuck”. She said it would probably be IV chemo. I said “Fuuuuuuck” again.
The Lord does not give me good words in times like this.
She said we would order a pet mri ASAP, insurance has to approve it, and probably one day next week we will scan me and get results.
But then I saw her mind spinning. You can actually tell when she starts to go out of the box. Her eyes widen a bit and she starts to talk and nod her head a bit as she begins to discuss some new options. She has an immunotherapy type trial coming in about six months and she said I would still be here.
That was a phrase that was both scary and hopeful. Think about that for a second.
There is also a mutation of an antigen that they are researching, and I signed off on a clinical pre trial test to sample my liver biopsy piece for this antibody. Should I have it, then there is a phase one clinical trial they are enrolling. She said my breast didn’t feel bigger and I look great, plus my liver markers went down again. Which is all good.
Then i told her about biking ten miles, and that I went and protested against the Susan G Komen Race for the Cure event, and she went “Yes! Good for you!” She said she knew how they only donate twenty percent to research and had actually seen an article on the protest. I told her it was me in the picture and showed her, and she couldn’t believe it. She asked me to send her the pictures.
She also told she and her colleagues keep discussing who would play her in the movie. I explained its a documentary, but we still Laughed about actresses to play her.
That actress would have big shoes to fill.
Enter Pushpa, who I had just hugged three hours earlier. Again, I was out of my body, hearing that they don’t know what side effects would come with this new drug because it’s so new, should i have the necessary antigen. I would also need another new biopsy.
Dr Stopeck said she has some other ideas, and let’s wait for the PET.
So here I am… dangling at the edge of another cliff.
Then we raced out of there because the appointment That I thought would be done by three was over at 5 and I was an hour away from school and hadn’t even had lunch.
I sobbed as I called my dad and mom, Jill and brother Rob. I couldnt catch my breath. My husband Rob kept telling me it will be ok. I still have time.
We still have time.
We got to school so he could help me set up quickly and I sobbed with my kindergarten team. My assistant penny said she isn’t worried and knows there are bigger plans for me. I told my new assistant principal that i plan on teaching through whatever comes.
I wiped off my face, had a moment in the bathroom where I talked to myself in the mirror, slapped on a smile and did Open House. My custodian Rose popped in, held my hands, and prayed over me like a woman on fire.
I’ve been surrounded by some amazing people.
I had eleven families show up out of twenty three, and we started to form our relationships. I was honest and let them know what is happening and that they will always be updated. They are all praying for me as well.
The video of me speaking at the board of Ed meeting was shared by the leader of the families who are being kicked out, and it’s at over four thousand views. All of the comments on the shared video by Rita Palma have been of more people now praying for me.
Thank you, Jesus.
My prayer army has grown on the day I needed.
I’ll work today, then try to clean my house quick.
I’ve got the film crew coming tomorrow and we begin shooting at eight in the morning at the yard sale that Kaits Angels is hosting. We will shoot all day, then Sunday as well. I had thought about going to church, but after a recent email, I’ll see if they just film me with my new fancy bible reading about Job.
Silver lining is I dont start chemo today.
My doctor looked at my hands and wants to do a trial with Donnie Yance so badly on this cream. Maybe I was meant to only be on this medicine so my doctor could find out about the cream to help other women.
Donnie got back to me last night. His assistant Erin, who I loooooooove, has such a good way with factual emails and research and giving hope. She said it may be possible that the cancer places everywhere are heterogeneous and some may react to the xeloda in a good way and others may be ramping up with the estrogen. That maybe I will end up staying on xeloda and adding more estrogen blockers.
My miracle maggie also sent me an article on fermented wheat germ extract, and that’s a new pill dr snuffleofogous told me about and I ordered $300 worth recently.
I also emailed my friend Jennifer Williamson. Yes, she is a light worker and has been spot on with everything. I asked her again about her seven years I’ll be cured vision and she said yes. I told her that I think God sent me a sign with my new head custodian Eric. He sang a NKOTB song in the morning with the words, “the right stuff”. When I messaged Jen, our last conversation in June referenced her saying NKTOB and the words “you’ve got the right stuff”.
What are the chances I heard that song in the morning of a hard day?
So here I am.
Now 3:30 am.
Listening to my husband breathe next to me as I pray to Jesus to let me love him for more years.
I got home at 8:30 last night and spent time with each of my kids. Quinn hugged me and told me I looked beautiful, and he wanted to eat me up… and we laughed, because I say that to him when he wears his scout uniform.
Morgan was in bed and is afraid she is getting a cold.
Maddie was in bed as well after a track meet. She surprised us all and tried out for the school play, “A chorus line”. She sang the song “Nothing” and even danced. She amazes me every day. We laughed when she said at least she didn’t sing the song tits and ass.
I went to bed and cried some more with rob.
It was a day.
It’s been a night.
I havent eaten since yesterday at 7:45 , so I guess I kickstarted a 24 hour water fast.
My friend rick Shapiro who wrote a book about hope messaged me as well. He is my guardian angel.
So, please pray for me that this is simply another hurdle for me that I will be able to leap over. My heart is still beating and my
life still has purpose. I dont know what or why God has this plan for me, but it’s a good one according to the Bible.
Good thing I got a brand new one this week.
Thank you all for your love and prayers.
Keep them coming.
And may God keep me here, laughing and healthy and loving my family, for years and years to come.
In Jesus’s name, amen.