From My Bubble to Yours: the Anniversary of Mom’s Glioblastoma Diagnosis

It’s been a year since it all happened, my friends. Last year, a day after the sadness of 9/11, when we took a breath and gave our loved ones an extra-long hug and carried on, on until the next year, is when our story with my mom began. That phone call. That drive.

I finally told David, during a quiet moment last week, that I have flashbacks to that night, that car drive, my calls for help. I’m embarrassed by that admittance–I’m a grown woman, after all, and this happened during my grown-woman years. I asked him if he thinks they’ll ever go away.

I want them to go away. I want the moment that divided before and after to be erased. This is what weighs on me: if it had been a stroke instead of a tumor, my decisions could have killed her that night. Do you realize that? Because I chose to try to find her before getting help. Because I chose not to call an ambulance right away to meet me there. Because I made a decision to drive her to the hospital myself even though I realized, as it was happening, that it was the wrong decision. I didn’t know. I was a grown woman. I was supposed to know. That regret is seeping into every single judgment I have about how I’m doing now, how I’m supporting her. I could be failing. Because even though I have the support of my family–Paul and Sarah visit, we have others who are helping out financially, and my aunt is as physically in this with me as you can get–I worry about what my regrets will be afterward, if even now, while I’m still in it, I’m grappling with that guilt.

(That’s quite a lot to carry around. Do you like how I just tried to hand it all over to you? How generous of me!).

My aunt and I were both with my mom on the anniversary day—we didn’t mention it, of course (“Hey, Suz! It’s been a year since you scared the shit out of us!”), but got her out to a nail salon, followed by a lunch where a small army of uniform-clad soldiers helped us get her wheelchair into the restaurant—and afterward, Mary took Mom back to her house so that I could get to school for pick-up. I was early enough to peek into our church next door and take a seat on a pew in the dark. I do this often lately, because those moments of true quiet have become a way to reset myself in the thick of these days. But that day, as I sat there in silence, I found myself placing my head on my arms on the back of the pew in front of me. I wasn’t thinking about anything in particular. I wasn’t feeling anything in particular. But then I started crying. Out of the blue, hard. I was back in the car when I typed these words. I didn’t feel like I’d finished crying.

It’s been a year. So much has happened. So much bad has happened. The waves of this: how it affects each of us around her, how it impacts jobs and relationships and finances. How it tests our values and compresses our sense of time. There are so many layers to this I can’t begin to unfold it all. 

So I fold in. But I don’t want to be tucked in around myself anymore. I told David recently that I feel like a paper doll that’s being ripped down the middle–care and worry for my mom has ahold of one arm, and keeping my own family steady has the other. But there’s nothing left in the middle, where I’m supposed to be. I don’t know who I’m going to be after this. But then there’s this thought: I’m not special in this. There are so many others I know of who are struggling. (It almost makes it worse. Hurt and pain should be a sporadic thing, you know? It doesn’t seem right that there’s so much more of it out there.)

If you need me to find an upside, I’ll give you this: I’ve become maniacal about keeping the house tidy, the laundry up, the groceries stocked (Eureka, it’s happened!). But here’s my thought process: I have to be on top of it, because what happens when the call comes again? Will I be ready? I feel terrible that she’s there at her home with caregivers, that someone else is making her meals, that I visit and leave again. When I hear her laughing with one of her aides, I’m both relieved that she’s settled in with them and ashamed that someone else has taken my place. But she wanted this, I tell myself. She wants this.

There’s a sapling growing out of her top gutter. I had to call a company to come clean it out. One of her old cats is sick, too. I’m now making sure the both of them are up to date on their prescriptions, which is strangely funny when the caregivers call me to say that they’ve given both Suzie and Sparky their meds. When it rains, I worry about water in her basement, just like she used to. The irony that somebody like me, who could barely stay on top of her own life, is now in charge of two households, is not lost on anybody. But what if I screw this up? I already have.

I miss writing. I miss calling Mom to ask her to help me out with the kids’ soccer practices when David is away for work. I miss her blonde hair and her wave as she’d back her SUV out of our driveway after a visit. I miss not needing to keep my phone by my side at all times. I miss planning day trips or daydreaming about a vacation. I miss sitting in my mom’s living room to talk without someone else always there, or her booting me away from the sink with her hip so she can wash the dishes instead of me, or her perfect messages back when I texted her about some silly problem. I miss not having to wonder if a mood swing is just Mom having a bad day or the cancer spreading through her brain.

But, upside: I’m thankful for Mary, and for my brother and sister-in-law’s visits. I’m thankful for the family who is enabling us to keep the caregivers with Mom. I had a friend the other day ask me about my mom, and then just quietly listen while I filled her in on what’s going on, never mind how awkward I felt in the telling. It’s stuff like that that helps the bubble break. It’s stuff like that that forces me to unfold a bit.

David asked me recently to try to see more of the good (ha ha HA my mom is dying it sucks) in all this: that she’s still here. That she is able to do what she wants, which is be at her home. That I have the ability to be with her during the day. That’s when I told him about the flashes. That’s when I told him about the paper doll feeling.

It’s been a year.

Mom has an MRI of her brain tomorrow, the 18th, and we meet with her doctor right afterward to discuss the results. Every single one of her scans up to now has been good (I mean, other than the glioblastoma thing, but you know what I mean), so we’ll see what happens next. My stomach is in knots.

I’m in my bubble. If you’re in yours, I’m sorry for it, but know you are not alone.

My mom still talks about seeing plays and driving, and she really, really wanted to see Hootie and the Blowfish in concert when they were on tour this summer (she couldn’t have handled the late hour and heat, even for her boy Darius). She’s still very much alive in this world, brain cancer be damned. She’s fiesty. She’s stubborn. And she still cracks a really good laugh at one of my silly jokes.

It’s been a year. So we take a breath, we give extra-long hugs, and we carry on.

All of us.

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