It’s been 50 days since we found out Beau relapsed. Well, I mean, really it’s been closer to a couple of weeks since the game plan changed to a relapse roadmap. But it’s been 50 days since the phone call about “cells the look off” and as far as history will retell it, that was the moment it all changed.
I put it out there, into the Universe, that I thought I was doing a good job. Well, really, I just put out the retelling of a conversation I’d had with my therapist where I had mentioned that I was doing said good job. But it seems even the public retelling of that conversation, well, that was enough. The retelling of confidence, enough to spiral me into the thick muck of wading through insurmountable grief. As though the moment those words posted to the interwebs, the claws came out of the dark forces and sunk into my back. Reminding me, or was it, demanding to tell me, that I would not be able to skate through this unscathed. Pinning me down to whisper that being tired would only scratch the surface of the inner turmoil.
The feelings were back. The feeling like you have all the time in the world and no time at all. The feeling like you are starving, and can not even consider eating a single thing. The feeling when the texts start to pile up, of friends that truly and innocently care and you start to suffocate under the weight of not perhaps why so many people care, but why you have to be the one that needs their caring. The feeling that you want every single person who has ever crossed paths with you to offer you a heart and a comment on caring bridge, and the feeling that every.single.comment rubs you raw because no one, NO ONE! has any idea what this is actually like. The feeling of escape when you start to mute notifications because even the ding of a new message makes you anxious. The feeling that comes after you make a plan for full time childcare, then stare into nothing for hours on end because even though you have no obligations, you can do literally nothing except sit in the shower and wonder why this is all crashing down. The feel of wanting to punch her in the face when she comments that “God has a plan”, and the feeling that comes right after as you desperately pray she is right.
Yeah, the feelings surely are back.
Yesterday the nurse team from the aphaeresis center at the hospital called. I wasn’t expecting the call. I mean, I was really hoping they would call, and knew that, in time, I’d hear from them, but yesterday at 3:47pm, it felt out of nowhere to start talking about the advantages and costs to a pic line being placed un-sedated. I hurried into Josh’s office and asked if he could manage the kids while I took this call. He was also not expecting and also hoping for the call and as such took his work into the kitchen.
The weird thing about cancer doctor conversations is…. Well, actually I guess it’s more accurate to write, “there are so many weird things about cancer doctor conversations…” The first that comes to mind is how casual the conversations always seem. It always takes a minute, sometimes not even occurring until after I hang-up, for the reality to sink in of what is actually being discussed. We use lots of words, but after I end the call all I can think is, “Really…. we are going to take his blood out and then put it back in….. what the……”
The other interesting part of these calls is that the nurses understand so much minutia about the process and procedure, but then when I ask a question like, “So, after the collection is he left with any t-cells? Like, does his body start making more? Does he have a single t-cell in him that afternoon?” And I don’t know if it’s that they don’t know, or they aren’t allowed to talk about those kind of medical details, but they transform from being the gatekeepers of all information to replying, “You’ll have to ask the doctors about that.” And suddenly I am flashed back to the early morning hours of March 16, 2011, in the dimly lit ultrasound room at Boulder Community Hospital, when an ultrasound tech said more or less the same thing, but we both knew that the baby was gone.
Because Beaudin does his Lumbar Punctures without sedation, the team had a working idea that they would place his pic line without sedation. Ummmmm. I frantically texted my friend who has a chronic diseases and has had her fair share of every medical procedure under the sun. She is tough as nails, but also loves happy medicine and pain killers. She also knows Beau well so I knew she’d be a good judge of this.
“Can Beau get a line without sedation? On phone with docs….answer asap”
“I’ve had it without sedation just numbing and probably one of the more traumatic experiences of my life but that was a pic line…
“That’s what I’m asking, a standard pic.”
“Um, yeah, no.”
I explain to the team that while Beaudin does do a multi-inch needle into his spinal column with ease, it is not to say he can handle a bedside pic administration. The unsedated LP is born out of heaps of lidocaine cream and, most of all, a real aversion to how the sedation meds make him feel following the procedure.
“Oh, ok, we figured that since he did LP’s, he could do the pic. There is a lot of pressure and discomfort, but some kids can handle it.”
I keep trying to finish this story. Typing, then deleting. I can’t get the feelings into words. I’ve spent two years watching my son go through pain and discomfort in a way that no one would every wish on their child. And I have seen him grow in his strength and bravery in a way that fills me to the brim with mama bear pride, until I step back and consider why such bravery has been required and just like that the wind is taken from my prideful sails. I walk the line, am I protecting Beau from a medical procedure that could be unnecessarily traumatic, or am I limiting him in his capacity to be brave beyond belief, yet again, because I am scared. Because I am stuck in January of 2019 when we had to hold him down with such agonizing force for even an IV. Is the trauma mine or his?
I explain his aversion to needles. The trauma around IV’s. The reason his does LP’s without sedation. I explain that just today I casually asked if he though that now, with all he has learned and with how many times his port has been accessed, he thinks he’d be ok with an IV, and he adamantly replied, “no way!”
“Oh, ok, thank you for telling us this. I am so glad that you shared those details of Beau with us.”
Gah. They are always so nice.
I remember that for the first handful of days in-patient at diagnosis, I would always genuinely try to answer the question that everyone asked before leaving our hospital room, “Can I get you anything else?” because it felt like such a genuine offer, like a life-line, like these people were just so nice, I had to take them up on their offer. I’d look around and wonder what we needed. Was it more ice water? A new pillow? This person was offering to help, WHAT DID I NEED!!!! And it wasn’t until a week or so in that I realized it was a script. Plain a simply. Because every single person who stepped foot in our room (doctor, nurse, PT, CNA, social worker, housekeeping, anyone.) would say it, almost like saying, “goodbye.” It didn’t make me love them any less. It just felt like an awakening, like the moment you realize that everyone is there to help, but really you are still alone on cancer island.
It’s the same kind of life-line that theses nurses are kind. That they thank me for telling them about my child, the details of his needle aversion. And yet, here we are, kind or not, deciding the best way to place a central line and take out his blood for modification.
What the hell.
The convo went well, and I still felt like I had been hit by a truck. It wasn’t helpful that the call came right before we were going to finally make it outside for time on the trampoline and now, instead, my kids had been sent to their rooms to play quietly because I was “on the phone with doctors” and Josh was trying to take calls from the kitchen island without a computer. Jude complained, “You’re always on the phone when we are suppose to be outside!” Which was 100% inaccurate, and I pondered in that moment laying in to him that I have been waiting on a handful of phone calls for WEEKS! and so excuse ME! if I just unexpectedly got one because I don’t WANT to have to have any of these calls, but I DO because that’s LIFE! SO GET OVER IT!
Instead I replied, “I’m sorry, bubba.” and swept him into an annoyingly long bear hug that he finally extracted himself from with shrill, silly, screaming.
1 thought on “Relapse- Day 50. kind apheresis nurses and trauma.”
My heart is so saddened to think of Beau enduring this. No words…just sending love and prayers. ❤️🙏🏼