It’s fine, I’m fine, everything is fine.
No, really. I want to write about this and I also can’t bare to have you read along and worry that we got bad news. All the news we have so far is good- results that we have so far are good. Exhale. But to tell only the good news would leave out a good deal of the story.
We met a new attending yesterday. The Car T team at CHOP has six attendings, resulting in us seeing a different one at every appointment. He was the first male. My age. Kind. Well dressed. We spoke before the procedure about some of the details of what the results would mean. It’s kind of like understanding a road map that has 100 different “if, then” forks in the road. I walked alongside the stretcher as they wheeled Beau to the procedure room. He was already antsy.
The night before he told me why he hated propofol. Years after he asked not to take it, I finally got to the bottom of it.
“It’s just like dying.”
“That feeling right when the marshy goes in.”
“Oh… How do you know? Like, how do you know that that is what dying is like.”
“I am just sure of it. It’s like the moment it goes in, I freak out, like, ‘oh! I am dying!”
“Beau, is that what you feel like every time you get marshy… like you feel like you are going to die?”
“No, mom, I don’t feel like it, I am going to die. It’s just somehow they bring me back.”
“Oh. ok. Would it help you for me to tell you more about propofol, about how safe it is?” If I’ve learned anything in parenting, in grief, in cancer, it’s that asking if someone wants to know another narrative option is a better way than just launching in to why they are wrong.
“Meh, not really. You’ll tell me it’s safe. I still feel like I’ve escaped death.”
My father in law and I sat in the waiting room. I don’t understand why they move us from the pre-op room which is also the post-op room, but they do. The fire alarm sounded, lights flashing, a recorded message on repeat informing everyone of an emergency in zone 8. I explained that last time we were here and this happened that the nurse promised it was nothing. I imagined the doctor with a needle in my son’s spinal column; an alarm sounding, lights flashing and wondered if I could get a refund.
“Hi, we’d like to come back tomorrow and exchange this experience for one where the emergency signal isn’t blaring during our procedure.”
He checked his watch and noted that it had been 30 minutes, which was the far end of the 20-30 minute window they had promised. My father in law is a man of few words, so I wondered if this observation made him worry like it did me.
The attending didn’t make a lot of eye contact as he walked towards us. When he took his seat he shifted in his chair. I wondered why he came out to update us and not the doctor who had performed the procedure. Last time it was that doctor. Where was she? What had happened that she couldn’t come give us an update, on the far end of the 20-30 minute window. He circled back to a conversation about Zyrtec and the eczema on Beau’s skin. It was clear he was delaying talking about the results. I felt the feeling rise in an instant. A palpable slowing of my heart. It started between my shoulder blades and quickly flushed up my neck.
An anxiety hot flash happens due to the “fight, flight, freeze, or fawn” response, which is the body’s way of preparing for perceived danger. The body releases stress hormones that send blood to the muscles and increase circulation, which can contribute to feeling hot. -WebMD
I was hot, clammy, my skin was tight. I felt like I couldn’t breath, not in my lungs, but my neck. I wondered if my face was red, flushed. ‘Betsy, it’s fine. We can deal with whatever he is about to say. It’s ok, we’re fine. It’s fine. It’s ok.’ I tried to talk myself back into focus so I could hear what he was saying.
I wondered if this was why my father-in-law had pulled the trigger to come visit. A nudging from God, who knew I would need him here when this happened. We sat next to each other, eyes burning holes through the attending.
“So…. we got back his labs from today…..” he drug the sentence out. They always drag the sentence out when the results change everything.
“…ok….” I stared through him. I wondered if this was the moment I’d write about later, just like I wrote about the buttercream yellow room of January 2019. Now I’d capture the mural on the wall behind him, his tailored shirt and dapper loafers. This was it, my brain seared with new memory.
This was the moment where my whole body flushed with adrenaline to flee, and my whole soul opened and inhaled the details, driven by primal reaction that I’d need them later.
“They (the results)….all look…. good,” he said without emotion.
The air trickled back into the room.
‘But?’ I thought to myself and waited, staring, memorizing the room. He was handsome, unmarried. His hair recently cut. He had a logo on his shirt that wasn’t Ralph Lauren, but another I should recognize. He had mentioned he was from Chicago earlier and I wondered why he was here. What brought him to Philly? why was he here? Where was the doctor who had performed the procedure?
He continued on about the Zyrtec and reminded me that if I chose to move on to topical steroids I needed to get the 1% hydrocortisone and make sure to call the nurse and let them know when we start applying it.
I nodded. He asked if he wanted me to have him call in the meds, even though they were over the counter. I shook my head, “No, we can grab them.”
“So, can you tell me what his labs are?” I circled back. My body still wasn’t sure where it was in time and space. The immediate threat had resolved, I thought. The flush heat on my back receded down my neck to my shoulder blades and disappeared as quickly as it’d set-in, but I still wasn’t breathing fully. He said the labs were “…good..,” but why wasn’t he smiling? Why didn’t his eyes look light behind his masked face? Why was he speaking slowly with reserve?
“Oh sure,” he replied
Eosinophils are high from eczema.
Ahhh, there it is. His platelets are dropping. That’s it. That’s why his voice has been reserved this whole conversation. That is why he led with the meaningless Zyrtec details, why he didn’t smile when he walked toward us. He was hoping I’d over-look this, hoping I wouldn’t see that now, three appointments in a row platelets have been declining. I can’t believe he thought I’d miss it.
“His platelets, that’s lower than last time…” I threw him a bone. If he wasn’t willing to tell me that terrible things were coming, I would lead him through the door.
“Well, lets see,” he looked on his device for Beau’s past levels. “Um, yeah, they are lower than the last couple times. Though nothing concerning. Still well above safe. We normally don’t worry about platelets until they are below 30 for activity, or below 10 for transfusion. “
‘I know that, you idiot. Do you think that I don’t know that?’ my thoughts fired back and forth before I could remind myself that he was not, in fact, an idiot and actually, he was not trying to attack us such data on platelet transfusion protocols. He was kind, direct, and aside from speaking in a painfully slow, unemotional way, approachable. He listened to learn, answered questions as a member of our team, not as someone gracing us with his knowledge. He was one of the good guys. ‘Betsy, he is one of the good guys, lower your weapon,’ I gently encouraged myself.
“Ok, so there isn’t a concern there.” I stated, though he knew it was a question.
“Nope, not at all.” He agreed.
He confirmed the nurse would be out to get us shortly, confirmed our next couple of appointment times and then said goodbye.
As the he walked away, I stared at the seat that he had left. I causally said, “Gosh, I thought that was going to go a lot differently based on how he walked out.” I edged my way back to emotionally stable, by starting to play the tape in my head. The tape that says something along the lines of, ‘Ok, I very clearly over thought everything. I appear completely safe. I’m so stupid, I always prepare for something so tragic. It was nothing. I always over think things.’
My father-in-law, who is known by all to be rather even-keeled, agreed, “Gosh, yeah,” he shook his head as thought to release his own adrenaline, “…the way he spoke, I just kept waiting for the bad news.”
The nurse came out from the clinic, “Beau’s mom? He’s ready for you!” she called over with light in her eyes.
My dearest cancer friend’s son is in maintenance. His ANC has dropped to 750, lower than it’s been in months. They have a family vacation planned to the Upper Peninsula that they now have to reconsider as they figure out if his ANC is on the decline.
I watched the Philadelphia sunrise this morning as we texted back and forth.
“I both think you could make this work AND to be real clear, as though I am screaming outside your window: YOU ARE NOT OVERTHINKING THIS!!” I encouraged her as she told me she felt stupid for overthinking it, and stupid for thinking this could ever have ‘just worked out’.
“Sometimes I feel crazy-stuck in my own head. He hasn’t been this low since DI and he ended up in the hospital. Messing with my head.”
“Linds, it’s not messing with you head. Your very smart, and very in recovery from trauma, brain is noticing similarities and preparing you for danger. You are doing exactly what you should be doing.
Some times I wonder if the only reason to walk the trauma and grief road with others is that in encouraging them, you rewire your own messages. I see her worried for her son, embarrassed she thought things could “just work out”, sure that the worst is coming, again. And it’s easier for me to see it, without the umbrella of personal shame. To see, that her very smart brain is recovering from very real trauma. And someday there will be more time to move away from fight or flight, but in the liminal space between trauma and healing there is a very real need to be reminded:
You are doing exactly what you should be doing.
8 thoughts on “The liminal space between trauma and healing.”
I love your last line. “You are doing exactly what you should be doing.” So true. Thanks for sharing such vulnerable thoughts in addition to the updates on Beau’s health.
We are all fine here. Fine now.
This. “ In the liminal space between trauma and healing… you are doing exactly what you should be doing.” Thank you for this. I’m for you and with you. —May 4th is coming! ❤️
Thanks new friend ❤
Your blog is always everything I need to hear. Thank you for putting this wild journey of pediatric cancer into perfect words.
Awww wow. Thanks Jessica. I am so glad you can see yourself a bit in the words I write. Thank you for commenting too, sometimes I just feel like such a downer when all I write about it this melancholy chaos!
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