A few weeks ago I wrote about down cycles and upswings that came on so fast we were left with whiplash. June 9, 2016 was the first time we experienced one of those upswings.
It was our fourth day in the hospital and suddenly Matt was himself in a way he hadn’t been in months. The light in his eyes came back. All that the tumor had slowly stolen from him over the last months, his joy and laughter and good nature, seemed to have returned within hours of the surgery. The connection between brain and tumor and personality was now so obviously apparent that I didn’t know how I’d ever questioned it before.
The transition back to himself wasn’t as easy for Matt as I made it sound just now. He woke up the night of the surgery, post-craniotomy, understandably confused, completely disoriented, and strapped to a hospital bed in the ICU. This last detail was a fact he always enjoyed sharing with doctors and friends alike, showing the pictures he’d taken of the bruises on his wrists caused by yanking on the restraints as he fought to stand.
It’s a visual I can’t summon because I didn’t see Matt like that. Matt’s father shielded me from seeing my husband in that state and bore the impact of the scene on his own. A kindness and a strength.
But that was the night before. By the morning, Matt was back to himself. When the physical therapist came in to test Matt’s balance and coordination, Matt walked a lap around the ICU and then stood on one leg while he scratched an itch with the toe of his lifted foot. The physical therapist laughed and said clearly his physical capabilities had not been impacted by the surgery and he wouldn’t need to start a rehab program after discharge.
The physical therapist’s observation struck me because, in my mind, though I’d been warned of the complications that could arise from brain surgery (physical, cognitive, verbal), though worrying about those complications had kept me up for two full days, I didn’t actually expect any side effects. Any worrying was just me being overdramatic. Of course Matt wouldn’t have any long term effects from the surgery. Of course he’d return from surgery completely fine. That was the only realistic outcome.
The neurosurgeon visited Matt some time in the morning. Matt cracked a joke and the neurosurgeon laughed and said (something along the lines of): nice to finally meet you. He tested Matt’s cognition and verbal skills and beamed when Matt answered every question with a twist of humor. Then he told Matt what he’d told me the day before.
The surgery was successful. 99% of the tumor had been removed. Unfortunately, the 1% left was made up of microscopic cells hiding in the folds of the brain and there was no way to surgically deal with those cancerous cells. The neurosurgeon recommended we start a treatment plan as soon as Matt healed from the surgery.
My memory is (conveniently) a little fuzzy here because I’m not sure what Matt knew beyond that he’d likely need radiation and chemotherapy. I know I didn’t tell him the devastating statistics waiting at the other end of a Google search. I’m not sure anyone else did either. And I know Matt didn’t take to Google. I think, at this point, Matt simply assumed he’d be fine.
When friends checked in and asked how we were doing I told them we were great. And I believed it. I said I had Matt back and, together, we could handle anything. We’d made miracles happen in the past. Of course, we could beat 1% of a tumor. Matt’s amazing brain could easily destroy microscopic cells.
I’ve said before and it’s worth repeating: Glioblastoma is a vicious disease. We couldn’t know that, with respect to brain cancer, a few microscopic cells could still devastate with blinding speed. The swiftness with which the cells divide is unpredictable, how any single patient will respond to a particular treatment is largely unforeseeable.
As I wrote this post, I tried to figure out how two years ago today, after surgery to remove a life-threatening tumor–and even one year ago today, while undergoing an experimental treatment–we could possibly still believe we were immune from anything having to do with brain cancer. Why, when the physical therapist announced that Matt didn’t need rehab, was my first thought obviously rather than relief? Why did Matt assume he’d be fine that fourth day in the hospital? Why was it so easy to believe we’d be among the lucky few to defy the odds?
Was it denial or naivety?
Probably both. But hope needs to start somewhere.