May 16, 2014

The Binder

The binder
The day I got engaged was one of the best of my life. Not only because of the engagement, that came at the end. The whole day was beautiful and loving and warm and sunny and spent with my favorite person in the universe. And then he ended the day by proposing, which was a cherry on top of the enormous chocolate fudge banana split that had been my day.

The next day was the third worst of my life. Within a week of getting engaged, and experiencing the second worst, I was learning a whole new world of vocabulary. "GBM," "glioma," "intrusions."

I was already pretty brain tumor aware. I'd been misdiagnosed with not one, not two, but three brain tumors. Of course, each time a doctor bullied me into getting an MRI or CT scan, the answer was the same. I did not have a brain tumor. I had painless ocular migraines, or synesthesia, or dysautonomia. All neurological problems without tumors to blame them on.

So when, in the winter before we got engaged, my future husband complained about problems with his left arm and leg, I worried.

"You should see a doctor," I said.

"It could be neurological," I said.

But of course it wasn't, he replied. He'd pinched a nerve. Or he'd forgotten to stretch properly. Healthy, strapping, brilliant, baseball playing engineers in their early twenties didn't have neurological problems.

He was happy. He was active. There was nothing wrong.

It took me months to convince him to see a doctor. I wasn't really worried. I mean, he was right, wasn't he? We were living together by then, and I saw him every day. I didn't see anything wrong with him. But when he came back from softball practice and complained that his left leg just didn't quite move the way he wanted it to when he was running bases... I worried.

So he saw the doctor. The doctor performed what were no doubt the standard tests. And at the end of the exam, he shrugged away M's concerns.

"You're a healthy guy. I'm guessing you have a pinched nerve. We could do a neural pathway test, just to be sure where it is, but really what you need to do is stretch better."

"That's what I figured," M no doubt replied, and they agreed the neural pathway test was a waste of time, energy, and money.

Of course, what the test would have found was that the thing blocking his neural pathways was in his brain. And that probably would have let to a CT scan. And that would have shown what we found instead the day after we got engaged.

Don't get me wrong, I'm not complaining about this turn of events. Because M was tied into a terrible HMO, having the opportunity of an emergency surgery to change medical teams got him superior care. Because of M's absurd ideas about honor and nobility and commitment, he would not have proposed to me if he thought he was about to die. Because our engagement was followed by trauma and chaos, our families never had the opportunity to doubt us as a couple, despite our differing religions, lifestyles, and backgrounds.

We were lucky. Unfathomably lucky.

Hardly anyone is ever so lucky.

So for Brain Tumor Awareness Month, I'd like to share something with you. A little piece of what it means to be aware of brain tumors. So aware that they swallow your entire life and become the one thing, the only thing, you are certain you understand anymore.

This is The Binder.

That week after our engagement, when I was learning to speak Brain Tumor-ese, my future mother-in-law started taking notes on a legal pad about what was happening. Recording it, in case the information would come in handy.

I rolled my eyes at her, I'm sorry to say. Or I would have if I wasn't trying so hard to be compassionate and understanding of everyone else's feelings at the same time as my own. I was angry at everyone, I thought their acceptance of M's prognosis would effect him like a contagion, and if he caught even a hint that they expected him to die, he would. But taking notes seemed harmless enough. They might even come in handy.

I had no idea how handy they would be.

Before M even began treatment, the legal pad had morphed into an enormous binder. Everything we could need, anything anyone could need, it was there.

It's still there.

It lacks a table of contents, and the past seven years have faded the labels on the tabs,
but I know what's in there.
Every six months, we go back to the hospital for another set of MRIs. And every month, I lug this enormous thing with me.

Those pink spots are bits of tissue from M's brain tumors.
Hard to be more aware of something than when you're literally holding it in your hands.
It's both an organizational nightmare and wet dream.

Every doctor, pharmacist, therapist, social worker, nurse, patient liaison, insurance representative, etc. we ever
needed to interact with or ask something of, ever.

It still has everything we could ever need, all the information we've ever collected. All the data. All the forms. All the files. Everything.

Every medication, every dose
It's not just the technical details, either. That legal pad of Grandma's became my confidante. M never read the binder- so I was more honest with it than I was with him. If I thought he was depressed, or struggling, or weakening, it went into the binder. And then I could bring it up casually with the doctor, M never being the wiser for my worries.

Reams of pages of the journal, dates and times of seizures, appointments, what we talked about, mental state,
And it was more than that. It was a constant reminder of everything we had to do, and of everything that Brain Tumors mean. Lab reports. surgical reports. MRI reports. Doctor's notes on official hospital documents. Discs of MRI images of white shapes inside my husband's brain.

Booklets titled, "A Patients Guide to Understanding Brain Tumors," and "Temodar: Your Questions Answered." As time wore on and the binder became heavier and heavier, changes had to be made.

I got a second binder.

I still live with these. And in a few weeks, when it's time for M to go back for his every six month check up, it will come with me. Just the one- the second binder is full of information either for only our references or that has outlived its practical usefulness. Until, as his doctor likes to warn,  "when" his tumors grow again.

Personally, I like to believe "when" means when he's ninety, dying from something totally unrelated, and his weakened immune system allows new tumor growth.

I could live with that.

This is what Brain Tumor Awareness is.

Click here to read about my engagement and what came after.
Click here to read more about "when."


  1. Wow. I don't even know what else to say. Love to you, lady.

  2. So interesting. We started a similar folder when we found out Henry had the 'Bif. Now it's kind of morphed into a filing cabinet, but all our resources are in there. It helps SO MUCH to be organized. AWESOME idea about keeping all the business cards in those little baseball-card-holding-binder-page-thingies :) I just transcribed all the info into my address book, because I am dumb. :)

    1. It was one of those moments of clarity that came while I was shuffling through a giant fistful of them, getting them organized to copy the info down. I had a lot of moments of clarity that year. >.<



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