After posting my dark room post a dear cancer mama friend asked how I was doing with the one year anniversary of Beau’s relapse coming up. At the moment, fresh off a productive writing session and post publication, I was feeling fine. But the audible pause before I answered her led me to wonder how I was actually feeling. I have always been one for dates and timelines and a one year anniversary seems of note. In the sea of chaos, the buoys of time felt like something worth clinging to. It’s been 1 month, we have 2 more weeks until the next whatever, we have 289 days left, and we have been doing this for 189 days.
I haven’t written much about Beau’s relapse. I mean, I have written loads about what came after the relapse. When he relapsed it hit so hard, so out of no where, that I had no poetic words to flow, no sense making to make, heck, I couldn’t even formulate the curse words necessary to express myself.
Yesterday a cancer mama friend got hit by the bat. The room had been getting darker for a couple weeks and she knew, but yesterday she heard the official results. Blasts in the peripheral. Her daughter has relapsed.
Acute Lymphoblastic Leukemia is touted as the “best” cancer to get because of its straightforward treatment and very high survival rate (>90%) What is less discussed is that 20% of patients, pardon me, of innocent kids burdened with cancer, relapse.
20%. That’s a bit.
The mama had commented on a post about my recent blog, saying their room was getting darker, and we (the cancer moms who follow the blog closely) all collectively held our breath for what that meant. Other friends texted me, “Have you heard any more from her?”
Last night I got an update, the relapse was confirmed. My heart sank. I laid in bed and considered how to reply, what to say. I quickly thought of all the worthy resources, the Facebook group for relapse, the group for CAR-T therapy, the websites for trials, the integrative practitioner for consult, the non-profits and grants for relapse.
And then I remembered the kitchen floor.
November 10, 2020
The day we got word of Beaudin’s potential relapse I remember almost everything as if it was burned into my memory in slow motion. Memories thick with trauma, it feels like I recall them as an on-looker from the outside of a slow moving film.
After a horrific phone call with our oncologist, Josh and I took Selah on a walk through the farmland south of our neighborhood. We needed to speak out of earshot of the boys. I don’t remember the conversation much, but I recall how to sun was setting, burnt orange over the mountains. I remember how Selah ran ahead of us down the lane. I remember thinking that her whole damn childhood was going to be mared by cancer.
When we got home, I laid on the kitchen floor. My heavy body held up by the hardwood. All that stood between the gravity of the earth opening up to consume me and my weary soul was some planks of stained oak. Hysterical sobs being held back morphed into disfigured gasps so that my kids didn’t see it for what it was. Our world was imploding, again.
I eeked out a couple of SOS texts. Dear Sarah told me dinner was on its way. I replied that I wasn’t hungry. I wasn’t sure I would ever move from the floor again, much less eat. She ordered it anyway. Fried chicken. Coleslaw. Mashed Potatoes.
“This is the best dinner ever!” Beau exclaimed as he loaded his plate. I looked on, or really, looked up, from the floor feeling the weight of entire world pinning me down.
“Why are you down there, mom?” Jude asked.
“I’m not sure. It’s just what I need.”
After fried chicken we watched Hamilton. Beau sang along, lyrics memorized, a confidant wry smile when he nailed a particularly quick moving verse. I watched Selah dance around his feet unsure if this was a dance party or a watch party. And all I could think was, “I can’t believe this is how it ends.”
While everyone watched Hamilton, I watched Beau. I stared at his face, the space between his front teeth, the cowlick in the back of his hair, the way his top lip curled when he was impersonating a Frenchmen. “I can’t believe we are going to loose him.”
After Hamilton, Joshua and I took the kids to Target. They had been asking for a new nerf gun and now felt like the time. We proceeded to spent approximately $300 on toys. That part wasn’t planned, but once we were there it felt impossible to say “no” to a single thing.
We strolled the toy aisles while our kids had a field day. They could smell the weakness, they knew this was their opportunity.
3 expensive nerf guns?
Yes, Jude, so much is about to crumble.
Mouse Trap and a $125 lego set?
Yes, Beau, it’s about to get so hard.
An over-sized Minnie Mouse Squishamellow?
Yes, Selah, we are headed back to the fire.
As we indulged every.single.request, Joshua and I kept looking at each other. We felt fully the insanity of trying to buy our way out of this and we didn’t care. For now, the only comfort was the toy aisle and we both knew it.
Within 24 hours we had booked a trip to an island in Florida where we would proceed to spend the month of November. I suppose next time I will tell you more about the time we spent on Denial Island.