October 6, 2017: Bingo

The next morning, the highway remained closed as clean-up crews worked to clear the fuel from the road. I battled rush hour traffic in the hopes of spending more time with Matt before I left to spend the afternoon with G and H, as I’d promised.

The promise was whispered sometime in the early morning hours. H had a difficult night. He’d been up countless times through the night, seemingly needing nothing more than the reassurance that I was home. When he left for school in the morning, I repeated the promise: I would be home no matter what. Matt’s parents and sister offered to stay the afternoon and evening with Matt so I could fulfill that promise. Again, with a fair amount of guilt, I accepted. I wanted to be two places at once: with the kids and with Matt. I wanted to be two people at once: a caregiver and a mother. I simply wanted to be more than I was.

Matt was awake by the time I arrived at Columbia, which was an improvement. But he wasn’t at all Matt. He was awake, but expressionless. The doctor used the term “flat” to describe his personality and it fit with a heartbreaking kind of accuracy. I told him about my night—the fuel spill and the hours parked on the highway—and he barely reacted. He didn’t tease me for following a stranger, or laugh about the Annie’s cheddar bunny packets I’d eaten for dinner, or rant about the inefficiency of traffic clean-ups. He said almost nothing and I found myself missing Matt, even though I’d just gotten him back. I remember worrying, once again, whether the flatness of his personality was due to tumor, side effect of surgery, or an emotional surrender. And was it permanent?

One year ago today, I saw a glimpse of Post Hope, of the precise pain that accompanies a funny story—or a stressful story or a ridiculous story—and the inability to share it with Matt.

The doctors started talking discharge into an acute in-patient rehabilitation facility. Everyone agreed I could not bring Matt home. Medically speaking, he was okay. His heart rate and breathing had stabilized. He required no specialized medical care. But physically and mentally, he was—

He needed two people to help him stand from the bed, a process that took the better part of fifteen minutes as he kept forgetting he was trying to stand. He needed help to walk to the bathroom. When an occupational therapist handed him a toothbrush, he couldn’t remember what to do with it. He needed to be reminded.

The shunt had successfully relieved the pressure in his brain, but it had warped his balance, his small motor functions, his memory, and his cognition. The doctors assured me a few weeks in an in-patient rehabilitation facility would help.

I couldn’t leave Matt, but I couldn’t break my promise to G and H. So, two places. When Matt’s sister arrived, I left to be home in time for the bus. I took the kids to a farm with their friends. As they ran through the corn maze and chose just the right carving pumpkin, I fielded calls from doctors and social workers and even, finally, from Duke, who agreed about the acute in-patient rehab and told me they would reconsider the wisdom of traveling for the October 15th appointment after viewing the most recent MRI from Columbia.

That night, I took the kids to Bingo at their elementary school. The moment we got into the car, my phone rang. Columbia’s phone number scrolled across the screen. I spent the next forty-five minutes on the phone with the doctor, crouched in a corner of the hallway just outside the school gym where I could see the kids and also hear the doctor (which, with a gymnasium full of elementary school kids playing bingo, was not easy.)

She wanted to delay Matt’s admission to the acute in-patient rehab. She was concerned by the sclerotic lesions on Matt’s ribs and with the way his third tumor had responded to the radiation. She told me Glioblastomas don’t disappear that quickly after Gamma Knife radiation, but Lymphomas do. And Lymphomas in the brain present very similarly to Glioblastomas in the brain.

In short, the doctor was concerned Matt had a secondary cancer. Lymphoma. As if one aggressive terminal cancer wasn’t enough.

I couldn’t quite believe that Matt would have a second cancer, but I agreed we needed to ask the question and complete the tests.

I hung up the phone and two thoughts overwhelmed me. One, I was comforted by the fact that we finally found a doctor who was asking questions, who was willing to think outside the box and look at Matt as an individual, not as another patient with GBM. I realized that’s what I’d been seeking from Duke all those times I’d hung up feeling disappointed by their answers. And two, as I walked into the gym to play bingo with G and H, and H clung to me and threaded his fingers through my hair like I might disappear if he didn’t, I wondered how much more we could all withstand.

This post ended up being heavier than I had planned when I started writing. I spent a long time trying to figure out how to turn it around. I couldn’t find a way, not one that felt genuine. And I think maybe that’s okay. After all, Glioblastoma is just vicious and cruel and heavy, and some days and weeks wore us down.

But there’s this to add. Last night, I once again took the kids to bingo at their elementary school. They played with their friends and didn’t cling to me like I might disappear. (H even arranged to go on his first sleep over!) I couldn’t help making the comparisons to last year, or recognizing exactly how much they’ve been able to withstand—more than I could have imagined.

And I’m left with this thought: our happily ever after may have broken, but G’s and H’s spirits remain, at heart, unbroken.

8 thoughts on “October 6, 2017: Bingo

  1. E, I can’t get over as I’m reading your blog, how often you describe that the post is heavier than you intended for it to be. It just seems like such a parallel to your role as the caretaker throughout this whole ordeal. It’s as though you want to protect all of us from all the pain and suffering that your whole family endured. It’s an incredibly large load to bare and I truly can’t imagine how hard that was for you. To always be trying to find the hope and the light and be positive. I’m amazed by you. I’m also glad that you are writing this blog because it’s allowing the truth to come out and be dark and be heavy. That’s a very healthy way to cope and get through the pain. I’m so inspired by your story. It’s an honor to be able to read it every day. You really are a true warrior.

    Like

    • Thank you so so much for saying that. I read your comment and was speechless. It’s just so kind of you to say. I still am speechless so I don’t know what to say besides thank you. And always thank you so much for reading. Getting this story out of my head and onto paper (screen) and making sure Matt’s battle isn’t forgotten really makes the days easier for me somehow. xoxo

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s