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.
|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.
|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|
|Reams of pages of the journal, dates and times of seizures, appointments, what we talked about, mental state,|
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."