Rigors, Mouse Power, and the Cloak of Immunity Immunotherapy

Once again, yesterday was a day that was both beautiful and scary.
I have anxiety every time I go for treatment, so add on a new therapy in a new place and without rob by my side and everyone in masks because of a pandemic that they say could kill me if I get it so stay isolated…
Deep breaths going in.


The Southampton Phillips Family Cancer Center is beautiful. I had my own cubicle with a skylight and glass wall dividers with a scene of beach grass.

It turns out that my nurse knew a friend from high school, one of my secret nurses, a mom of a young man who both helped with my fundraiser at Jeni’s Main Street Cafe, as well as my sorority sister who gave her a heads up I was coming.
God always puts people where and when I need them.


It started out smoothly, we accessed the port, and waited for labs to begin the infusion. I walked to my window and there was rob in the parking. I called him, he got out of the car and sent me an air hug and love.
Every girl who grew up in the eighties wanted a John Cusack moment from Say anything where he holds the radio up.
That was my moment.


The situation was not one I ever dreamed, but let me tell you, seeing him in the parking lot and as what I needed to breathe.
The herceptin was administered over an hour and a half. I did a Facebook live video to show my friends I was ok. I sent a video to two friends.

I called another. I spoke to my mom and dad. My four year old niece snuck a call to me in her bedroom, and we giggled together.
It wasn’t too bad.
Then?
The perjeta was administered and when it was almost done I felt like I was going to die.
I had spent most of the day feeling warm, so warm that I didn’t take a blanket and took off my sweater. Suddenly I started to get very cold and put on my sweater. It didn’t help. Then i asked for a heated blanket and my nurse Laura looked at me shivering and said she was just going to sit and watch me. Then I asked for another and another blanket.
Then?
I could not stop shaking. My whole body was out of my control. Laura got another nurse and they stopped the infusion. I was 95% done with it. They decided to give me steroids. That didn’t help quick enough so I got 25 dose of Benadryl right into the port. Usually I would get it piggybacked with saline because it hits you hard when administered alone. Then they gave me another 25 of Benadryl. They tried to get me to drink hot tea, but by the time my shakes subsided enough it for them to hold up to my mouth it was cold.
I thought I was dying. That an allergic reaction was going to kill me and I was alone without my family. I tried to call rob but couldn’t figure out my phone. Finally I got hold of him and Laura explained I was having a reaction.
Imagine how rob felt knowing he couldn’t be with me.
They kept monitoring my blood pressure and it had spiked high, and they kept the oxygen thing on my finger. I worked and worked to get the shaking under control, but couldn’t. It lasted a long time, about forty minutes. They called my doctor and she said i would not get the rest of the dose. My breast also started throbbing, so badly that I wanted to cut it off.
They need to watch me for an hour after my body calmed down, and since I was the only patient left in the place, and because it was so severe, they let rob up with precautions.
I was so out of it they had to use a wheelchair to get me to the car.
I cried all the way home.
Apparently what happened is called “Rigors”.
The perjeta has mouse protein in it and my body may have recognized it as an invader and reacted. Spider man got bit by a spider and got spidey powers… I wonder what will happen to me? Will I like cheese more?
Immunotherapy also revs up your immune system. My immune system has not been able to see the cancer cells so they kept in growing. Yesterday the Harry Potter cloak of invisibility was ripped off the cancer cells and I am saying the immune system began to unleash full force and fury at the cancer invaders.
Like…”What the bloody hell? How did those guys get in? ATTACK!!” All the pain in the breast was my immune cells kicking the crap out of the cancer cells.
The hardest part was walking into the house all drugged up and out of it. My kids saw me like that, Maddie went to her room, Quinn looked scared and went to his room, and Morgan stayed on the other couch by me. Rob went and explained to the kids I was ok and had a reaction and just was drugged up.
Seriously. Today starts distance learning for them, I have to start distant teaching and we all just had a traumatic day… during a pandemic… after being isolated for weeks now and still have weeks to go.
The Benadryl wore off hours later but then the steroids kicked in around 11 and I had some more side effects.
I also spent last night praying so hard for a riverhead police officer who was in a horrible car accident while in pursuit of a criminal . Please continue to hold him, his family, and all of the officers and first responders who went to the call as well as know and love him.
My sister had been in an accident years ago and her patrol car flipped. It brought me back to that moment. I texted her late into the night as she stayed with her officer that I loved her.
It was not a stellar day for the women of my family.
Today the distant learning plan is being released. We were given two days to prepare a plan and handed it in a week ago. Today parents will see it. Please be patient. It may have been “spring break” since Thursday, but my whole school has been working long days trying to teach ourselves learning websites, contacting families, and so many zoom meetings and texts and emails that I have lost count.
I was in a zoom last night for an hour and half with my colleagues. I was still out of it, but I can tell you there isn’t anyone working harder than the teachers. We are the invisible ones lately, but I’m taking off the cloak of invisibility and telling you… we have been working non stop to track down families, making sure they are getting food, and wondering how this will all work while working blindly and remotely.
I love my colleagues, and we are fighting for the ones who don’t have access to technology, the ones who will be left behind in all of this mess. Education in America means a fair and equitable education for all. FOR ALL. No matter your skin color, income level, language, or ability.
Even during a pandemic.
Today it begins.
The distant learning.
The homeschooling or “crisis learning” as I call it.
I’ll be dealing with side effects and trying to teach my own kids and keep track of their learning while also working and doing the same for 23 other children.
Pray for us all.
And please… stay inside. I wore an N95 mask yesterday for my own protection and now know why medical staff have bruised and red faces. It hurts your ears with the band, it hurts your nose where it is fitted.


And feeling like you are dying and knowing your loved one is in the parking lot is an experience you never want to have. Trust me.
So stay home. Stop the driveway drink hang outs. Stop letting your teens get together. The sooner we do this, the sooner we get back to our lives, and the medical staff and first responders can rest.
They are all heroes. My nurse knew I was religious, and when I was shaking and crying and wrapped in a blanket cocoon she held my hand and prayed over me.
Thank you, God, for sending me Laura yesterday.
I’m going to try and sleep another hour or so before getting the kids up and ready for school and myself ready for work.
May it be a peaceful day.
In Jesus’s name, amen.

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