It Makes My Head Spin

It beats the alternative

It’s Sunday, 21 July, 2019. For this posting I’m going to set aside the cancer shit and start talking about some other shit. Aging. Specifically health and aging. I remember when I was in my 30s, I was in the navy and we were required to have annual physical exams. I’d always come out of there thinking about how boring I was. Never anything wrong. No problems. No conditions. I didn’t even wear glasses then. Now, look at the picture of what I face daily, only one month into cancer treatment. Mind you, a couple of the drugs I was already taking for previous issues, which I’ll explain.

My Daily Regimen After Only One Month

In my case, I don’t think youth was all that it’s cracked up to be. I have no complaints about aging, in general. I’m happier with the myself. I’ve had a couple of rewarding careers. I’ve travelled. I’ve gained a bit of wisdom, I think. And as they say, it beats the alternative. But I miss boringly good health. I retired from the navy at 38 and went on to work for the Department of Defense. Things were going pretty well when, in my early 40s, I had a couple of episodes of vertigo. Short and scary. So, like anyone would do, I went online, researched, and self-diagnosed. I visited my doctor, reported my symptoms and made my diagnosis – Meniere’s Disease. Boy, was I wrong. Luckily my doctor didn’t pay attention to me. Instead, he scolded me for self-diagnosing and sent me for an MRI. He called me at work a couple of days later with the news.

I remember him telling me to sit down. That can’t be good. That’s never good. I was sitting. Then he said it. “Brain tumor.” You know, those two words are almost as scary as the C word. I don’t know, maybe scarier. Mine was a benign tumor called an acoustic neuroma. He was quick to clarify that it was not cancer but it was serious and it had to be dealt with. He gave me the name of an oncologist and a couple of weeks later I was in it. Tests. Waiting. Bad news. You know the drill.

They found this pea-sized tumor sitting there, just behind me left ear. Amazing. So small but such a trouble maker. They explained that I had a couple of options. I could have it surgically removed. Brain surgery. God, again, two scary words. Or, they could use radiation to shrink it and hopefully render it harmless. It’s important to understand that while the tumor was not cancer, if it continued to grow it would eventually grow into my brainstem and I would quit breathing in my sleep. Now I’ve grown quite fond of breathing and I didn’t want to stop. So, between the two options, radiation was the least dangerous. I actually don’t remember a lot of discussion about it. We just did the radiation.

I named it Junior

I won’t get into a lot of details. Frankly, it was a long time ago and I don’t remember the details. Radiation, Monday thru Friday, for eight weeks. After a couple of weeks my brain began to swell and I was put on steroids. Killer. It’s awful what those things do to you. I barely slept for weeks. And in the end the tumor never actually shrank. But it did stop growing and ultimately, given that its growth was the danger, that was good enough. So there it still sits today. By the way, I named it Junior. My friends would call and ask, “How’s Junior?” when they wanted an update on my condition. Things went OK but after I resumed my life the vertigo attacks didn’t stop. In fact they worsened, both in frequency and intensity.

At first the attacks came every couple of weeks and lasted for two or three hours. But over time they came weekly, even twice weekly. And the length of the attacks increased. Four hours. Six hours. Eight hours. The longest attack lasted 18 hours. I had seizures during that one. I didn’t know what the seizures were and I thought I was going to die. That’s not an expression. I actually thought I was dying. I remember thinking about my daughters. How sad they would be. Would they be ok?

For a decade vertigo ruled my life and robbed me of my independence. I saw neurologist after neurologist. Nothing. No ideas. No solutions. A couple of them didn’t even bother to get up from behind their desks to examine me. I didn’t know what to do. I couldn’t give up hope that somehow, somebody would find a way to stop it. But nobody was really trying. I was in hell. Literally. I was in hell.

An odd thing happened

I’d been seeing a particular neurologist for some time. One day I called his office to make an appointment as he’d to told me to see him every six months. When I spoke to his assistant, to make the appointment, an odd thing happened. She said, “Mr. Marulli, you’re still seeing him?” I said yes, that nothing had changed. She asked why I had not gone to see Dr. Zee. Huh? Dr. Zee? Who is Dr. Zee? She said he was Johns Hopkins Hospital’s expert on vertigo. WHAT?! There was an expert on vertigo and nobody had referred me? Or even told me? What the hell? She gave me his contact information and I called his office immediately. I introduced myself to his assistant and gave her my background. At first she seemed to be trying to discourage me, explaining that Dr. Zee only sees patients on certain days because he teaches. She said it would be at least six months before I could get an appointment. I told her I wanted to make an appointment, even if it took a year. It didn’t take a year.

When the day of my appointment arrived I was all nerves. This was it. He was my last hope. He was, as I had been told, “the expert on vertigo.” If he wasn’t able to figure it out, nobody could. My god. Then what? When he entered the examining room he had two or three medical students in tow. I filled him in on my history. I told him, “You’re my last hope.” And then I cried. I mean I wept. Like a baby. That was unexpected and I was embarrassed. 10 years of hopelessness poured out in that examining room. He gave me a tissue and told me, “We’re going to figure this out. We’re going to try something and if that doesn’t work, we’ll try something else until we solve it.” My god! No doctor had shown me that kind of concern. And I believed him. He was going to end my hell.

Very quickly Dr. Zee surmised that the nerves in my head were having seizures, like epilepsy. He prescribed an anti-seizure medication given to epilepsy patients called oxcarbazepine. I began taking it immediately. And you know what? Sure as shit, I had one or two more episodes, and they stopped. The vertigo stopped! I had a follow-up appointment with Dr. Zee six months later. Guess what I did. Yup. I fucking cried again. Tears of joy. Years of hopelessness had been washed away. I had my life back. I could move on. Thanks to my hero, Dr. David Zee, at Johns Hopkins Hospital in Baltimore, Maryland.

I’m the freakin’ evidence

I continue to take oxcarbazepine daily and I see a neurologist every year or two. I regularly have MRIs to measure the tumor, to ensure it’s not growing again. So far, so good. Oddly, sometimes these neurologists will tell me there’s no evidence that oxcarbazepine has any affect on vertigo. Yeah? Bullshit. I’m the freakin’ evidence!

And with that, there is another health issue that resulted from that little pea-sized bitch of a tumor. I lost the ability to hear clearly in my left ear. But, that’s another story for another posting. I don’t want to lose you.

Importantly, there is something significant about this experience. I believe the struggle gave me the strength to cope with anything. For over a decade I woke up every morning wondering if the day would bring another attack. If the world was going to spin around in my head for hours and hours. And when it did, I’d throw up, go to bed, and wait for hours for it to stop. Then, after it did, I’d get up and do it all again the next day. And the next. And the next. And while I did this I continued to live my life as positively and normally as possible. I never gave up. I guess I didn’t know how. And I still don’t.

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