HuCART Boost- Pre-chemo Part 2

Part 1 can be found here.

My mind feels foggy. Like I have a hyper focus on the smallest of details, and yet the inability to focus on anything. I turn on the tv and watch endlessly while I can’t connect with caring about anything that I see. Should I change the channel? Meh. Apathy. Exhaustion.

I have no motivation, understanding that the motivation to go outside in blustery cold wind isn’t just normal motivation. I don’t have any. I am hungry, but nothing sounds good. I want to eat, but can’t muster getting up to make something. I scroll Grub Hub and then set down my phone because there are too many options and nothing sounds like it’ll be worth the wait.

In the chaos of planning the trip, I found small moments to daydream about empty days away from family commitments. I packed books I’ve been meaning to read and thought of all the blog posts I would finally get around to writing.

When we arrived Sunday I stopped at Whole Foods and loaded the cart with the things I knew would serve us- fresh vegetable juices, organic produce, and the like. Yet daily I find myself chugging my 4th mug of cheap coffee and munching donuts and crackers while vaguely wondering when I will pull it together.

The whiffs of effort I do have I spend preparing snacks for clinic for Beau- fresh berries, cucumbers, snap peas, meat bars. I relax as he plows through them and I eat a greasy croissant from the hospital cafeteria. As long as he survives…. as long as he survives…. I feel the relentless drum on my psyche.

I can’t hold it all, so at the least I will hold him.

The days are long, and the nights longer. Beau’s internal clock is off, so he is up until after midnight and sleeps in until close to noon. His body tired and sore, he doesn’t feel up for anything aside from couch laying, and I haven’t got it in me to convince him of anything else. I ask multiple times a day, in case anything has changed, “Beau, do you want to go down to floor 28, watch a movie?” and he answers multiple times a day, “No, I’m good.”

The weather is miserable, COVID is everywhere, and Beau has no immune system… there aren’t many options of things to do. I’m bored, but he is good. As long as he survives…. as long as he survives….

We are on floor 30. Everything seems small out the window. The distance to the car, parked in the building next door feels invincible. After clinic yesterday, I left my phone charger in the car, but down the hall, down 28 floors, out the lobby, across the drive-way, up the stairs, and through the garage for it’s retrieval seemed aimless. I suppose it would be something for us to do, but I didn’t want to do it.

I update instagram, more often than ever. Feeling the connection to a meaning bigger than what’s in front of me. It feels creative and fulfilling and robust on the inhale and on the exhale…utterly aimless. I watch back my stories and ponder deleting them, deleting it all.

What’s the point. Of this. Of any of it. Of showing you my serene skyline morning view when really I’m just worried this won’t work. As long as he survives…. as long as he survives….

I wade in and out of creativity then melancholy and back again.

So much has happened this week and I feel like I can’t put words to any of it. But not communicating it may drown me.

On Monday, the nurse casually said that Beau’s b-cells had declined to 2.1% and were below the threshold for reinfusion. I stared out the hospital window and etched every detail into my memory, wondering if this would be one of those moments where everything fell the fuck apart. The hours followed in a slow drawn out way, where I felt like every movement I made was through thick muck.

We had already started the pre-chemo, it was very much too late to turn back. The pre-chemo would obliterate any t-cells in him, making a boost imperative. The train had left the station, and I wasn’t sure we should be on it. As long as he survives…. as long as he survives….

A boost is required if b-cell levels are above 3%. And they were, last week. When we measured. When we planned this. When we upended everything and moved back to this stupid town. And now the level was at 2.1%. Did we even need to be here?

The slow drip of wisdom filled, ever so slowly, my capacity to hold loosely to the details. By evening I was explaining to a dear friend who had told me I sounded unreasonably calm, “Well, I really just don’t know what it means, but if I have learned anything in the last 3 long, impossible years, it’s that nothing is EVER as it seems.” I didn’t explain to her that I had spent a couple hours paralyzed with panic in the hospital after the nurse explained the 2.1% level, sure as shit they we were making the biggest mistake of our lives.

But I know when that feeling surfaces, when it feels like life or death is in the decision, that nothing is as it seems.

And sure enough it wasn’t…wasn’t as it seemed. We were in fact on the right track, despite the data changing. Even with levels dropping back to 2.1%, they had been above the 3% threshold (all the way up to 6% to be exact) and as such, the booster route was secured. Once I finally heard that from his doctor, 48 hours later, I felt peace, and pride, because I could see the progress that my own psyche had made in not being completely flattened by the unknowns. Or at least not being flattened for more than a couple hours.

The winds are shifting, and still, we sail.

Beau was hysterical after he was accessed on Wednesday, gasp crying that his port hurt. Completely uncharacteristic. The nurses didn’t move quickly to do anything about it. One just looked at me, looked at me like I should have the answers to what was happening. “I don’t fucking know,” I screamed, “you’re the fucking professional.” and by that I mean that I said, “Well, I don’t know, what do YOU think we should do?!?” But no one was moving to do anything. He just cried, hysterical. It was his turn to be the soundtrack of the clinic, the background noise: a child undone.

As long as he survives…. as long as he survives….

He recovered after 20 minutes of the adults in his life standing around and staring at each other and I wondered if he just needed the moment to loose his shit. I don’t doubt it hurt, but aren’t there times where our physical pain triggers the release of our emotional pain? Where you tell people you are in pain and they just look at you with looks of confusion and so the only way out seems through a solid cry?

So perhaps it was my tenderness for him, for this, for us, for the space that is feeling like we are making actual life or death choices that allowed my heart to take in the information the doctor gave us. The assurance that we were on the right track, that this was exactly what needed to happen. If he can do this, so can I. As long as he survives…. as long as he survives….

And then the doctor casually added that our chances here, of the boost working, are 50/50. It’s a flip of the coin if these cells take. So casually the statistics are given.

I’ve seen better odds. I’ve also seen worse. As long as he survives…. as long as he survives….

My son recovered from hysterics, my heart open to the doctor’s assurance, terrible statistics. This is a day at clinic.

We discussed with his nurse if Ativan (an anti-anxiety med) would be the best way to get through the last port access of the week the next day. I wasn’t sure, after the screaming, if I’d be able to get him here for the final day without some kind of pharmaceutical help. But just as we were discussing how much Ativan to dose him I had strong deja vu, realizing we’d had this exact conversation on the last two Day 3’s of pre-chemo, March 2021, August 2021.

Day 3 is when it all just seems too much to bear. Knowing we’d been here before, and gotten through before, I knew we could do this again.

Memory. Memory of getting through. It’s exhausting to survive. As long as he survives…. as long as he survives….

In the end, Beau agreed to stay accessed overnight Wednesday. This is available to him for the entire week, but he doesn’t like to go home accessed because he is a stomach sleeper and that’s not possible with the port accessed. He prefers to limit the time by which he has a 2″ needle in his chest which is fair enough. He also can’t use his left arm when he is accessed. I think technically he can us it, but it feels weird in his chest, and so he just doesn’t. As such, a port access does debilitate him. But the trauma of his access on Wednesday was fresh and so when they offered for him to stay accessed overnight he, surprisingly, agreed.

The gift of not having to access Thursday morning was palpable. I walked down the clinic halls and felt, dare I say, light. The long pre-chemo week was almost over. We had a simple 30 minute drip chemo today and then a long weekend of nothing.

We had done the hard thing, yet again.

As long as he survives…. as long as he survives….

As long as he survives…. as long as he survives….

As long as he survives…. as long as he survives….

As long as he survives…. as long as he survives….

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4 thoughts on “HuCART Boost- Pre-chemo Part 2”

  1. I just love you. And that time was so so terrible. I hate it for you.
    Love and miss you…eager for your next update…curious how the current watch and wait is feeling/going.


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