Searching for NED
As I write this, Alison sits outside talking to the baby.
A year ago around this time, she and I excitedly hopped a cab to the hospital a few blocks away to have our first child. This was after years of disappointments. That’s a picture of her above just before the big day.
Didn’t tell you all about her being pregnant because we’d been disappointed, oh, so many times.
Words can’t really describe how it felt during that time. To say that we were excited and happy doesn’t really doesn’t do justice to amount of joy we had.
Nate’s birth was, thankfully, quiet and uneventful. But Alison was…off.
She was clumsy, which has always been my role in the relationship. She was never clumsy. But we all just attributed it to her being a first time mother.
Five short days later, she said simply, “Something’s wrong” and collapsed, shaking into a terrifying full seizure.
The ambulance came and took her away to the exact same hospital that we were just at to give birth to Nate. I went with her. After several anxious hours in the ER, the doctor said that her blood looked “great.” We breathed a sign of relief.
But, there’s something on your CAT scan.
To this day, dunno why he didn’t lead with that.
A few anxiety and tear filled days later, another young doctor pulled me into his room and he pulled up her MRIs.
Even as a lay person, I immediately knew something was wrong. The cancer looked as it were half her brain.
Me: Is she dying?
Doctor: (coughing) Well…we’re all dying, aren’t we?
I wanted to punch him in his cowardly face. We weren’t getting the most emotionally intelligent doctors here. It didn’t matter anyway. I knew the moment I saw the picture. We only had a few months.
Got up and walked over and somehow told her what it was. She didn’t believe me at first. It must be some mistake, she said. But it wasn’t.
Words can’t really describe how it felt during that time. To say that we were anxious and terrified really doesn’t do justice to the amount of heartbreak we had.
Unbelievably, I had to repeat the process several gut-wrenching times over the next few months.
Dunno how much time I spent with her. Could have been an hour. Could have been thirty.
Then I told her that I had to go to the bathroom. Walked out the door and asked a nurse where the nearest one was.
Out the door to the right, and then another right. It’ll be on your left.
Thanked her, made a right, another right, and stepped into the bathroom on the left. Walked into the stall, and sat there by myself and said, “What the f___?”
Dunno how much time I spent there. Could have been a minute. Could have been thirty.
Afterward, got up, walked over to the sink, and told myself that I could do this. That she could do this. Splashed cold water on myself to make sure it wasn’t all a bad dream and I needed to wake up. It wasn’t. Repeated it just in case.
Nope, still in this goddamn hospital. So I went out, made a right, then a left, and then sat with her for another week in that goddamn hospital.
Alison cried every hour after that. I cried every night. At the time, it was the worst period of my life. Didn’t realize that there could be – and was – far worse to come. Said it before, there’s always more room for down (and the link before this comment is to an entry where we lost yet another baby).
Yet things have somehow improved, slightly. At least to the point where Alison is stable, for now. For some, this would be enough but it’s not for me. Like Bligh, I want us to go home.
Wish we could go back into time before she was brittle, or to the future, to see how she and the boy are.
Brain cancer is something so deadly that, unlike other cancers, there’s no such thing as remission. Instead, the best you can hope for is something they call NED: No Evidence of Disease.
We’re not there. There’re two small pieces of tumor still in her head. Like bullet fragments inching towards her soul. I’ll never sleep soundly again until they’re gone. Until we see NED. Even then, I’ll always be uneasy.
But the doctors didn’t think that she was going to last more than a few months. So we’re slightly hopeful.
And, as I’ve done throughout my life, I’ll struggle with whether or not the hope is a good or bad thing. And we wait for NED.
Her: (a year ago today, crying) Will I die?
Me: I won’t lie to you; it’s not good. But I won’t let you. Be strong, ok? We got a kid now. He needs you.
Her: (through tears) It’s not fair. I only had a few days with him.
Me: You’re right, it’s not fair. But you’ll get more days. I promise. I’ll do whatever it takes for you to get more days.
Location: home, waiting for more tests
Mood: pensive
Music: build time machines to go and get us back, back before we were brittle
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