Meningiomas: A Patient’s View

Published on 26/03/2015 by admin

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CHAPTER 61 Meningiomas

A Patient’s View

Liz L. Holzemer

All things have second birth;

The earthquake is not satisfied at once

—William Wordsworth

WHEN THE BIG ONE HITS

When I was growing up in southern California, my parents always had an earthquake survival kit on hand. It was imperative to know where to locate the stash of bottled water, canned goods, can opener, flashlight, and all the other necessary essentials. I also remember all too well the earthquake preparedness drills in school. Duck. Cover. Hold. The trial runs were always the same whether it was in elementary or middle school. The goal was to prepare for the Big One were it ever to strike.

Meningiomas and earthquakes share similar characteristics:

• An earthquake silently pushes at tectonic plates for months, years, even decades, becoming an insidious force that unleashes its unexpected and ferocious devastation without fair warning—in the same vein, the majority of meningiomas grow slowly and by the time of discovery, they can cause serious and permanent life altering deficits. By the time I was diagnosed on February 3, 2000, neurosurgeons estimated my meningioma had been growing for at least a decade, yet I had no symptoms until its size and pressure was so great it had shifted my brain to its mid-line.
• It is virtually impossible to predict when and where an earthquake will strike—a meningioma also strikes indiscriminately and at any age.
• When an earthquake hits, others experience it with you—a meningioma diagnosis shocks not only the person receiving the news, but also loved ones around them.
• The magnitude of an earthquake does not matter. Whether it’s a small trembler or one registering 7.9 on the Richter sale, its aftermath can be devastating—a meningioma diagnosis is earth shattering. When you’ve been told you have a meningioma, everything shifts under you, destroying your world and your life as you once knew it.

When I was diagnosed with a massive temporal lobe meningioma at age 32, it felt like the mother of all Big Ones had finally struck without any warning. I was a freelance writer, happily married to Mark, a major league pitcher. We called his native Colorado home for a few months; the rest of the year was spent living out of Samsonite suitcases. I can vividly recall the shock of that diagnosis as if it was still that morning. A Colorado winter morning to be exact. The sun had yet to stir me from sleep. Instead, the high pierced shrill of a phone performed the sun’s daily ritual. An unfamiliar voice greeted—if you could call it that— me and matter of factly delivered a fate I will carry until my last breath. It only took four words.

“You have a meningioma.”

It then felt as though the line went dead, but surely it was me who was dead. My life shattered into a million little pieces that day.

Now, looking back and having pieced together all the clues, I realize there were warning foreshocks—I just couldn’t interpret them.

Foreshock number one was my altered state of reality, which was later explained as déjà vu or aura epileptic seizures. I would experience temporary imbalance, lose my footing, or have a brief dizzy spell. Typically it happened if I’d been gardening too long in the sun or got up too quickly. Other times, I’d have an episode where I had a skewed sense of my surroundings— people whizzing by at the speed of a bullet train; patterned clothing taking on a life of its own; colors and shapes becoming more vibrant and defined. It was as if I was taking a 30-second tour through a Fun House and then it would pass, followed by extreme fatigue. I chalked up these infrequent episodes to some inexplicable occurrence.

Foreshock number two was my inability to become pregnant. Five years into our marriage, Mark and I decided we wanted a family. We were ready to trade in our nomadic baseball life for a little league of our own. However, months after ceasing the pill, my monthly cycle still hadn’t arrived. My doctors told me my body had yet to rebound from a decade’s worth of taking the pill. I was labeled impatient, overly anxious and sent home. I accepted the news as much as a period-less woman could.

Over the next nine months there were a succession of foreshocks, too many to count. Numerous blood tests—I now have collapsed “junkie using” veins—ruled out every suspected affliction, disease, or condition. On paper, I looked great—good diet, daily exercise—everything healthwise checked out. However, my personality took a nose dive. Loved ones noticed a clouding in my usual sunny disposition, but couldn’t quite put their finger on it. I totally lost interest in my interests. I grew a shorter fuse. Snapped easily. To put it mildly, those around me walked on eggshells, mindful of my unpredictable mood swings. Tears gathered, streamed, ceased to stop. Crying over what, I couldn’t tell you. I grew increasingly depressed, frustrated, and couldn’t understand why I wasn’t being taken seriously by my doctors. The reflection in the mirror had become a lackluster shell of the former me. All that remained was a hollow exterior that was once home to a vivacious, easygoing woman.

The litany of labels continued:

“You’re depressed.”
“Hormonal”
“Stressed.”
“Female.”
“It’s all in your head.”
I was bluntly told my capacity to produce eggs no longer existed.
Cashed out.
Discarded.
No ka ching for me.

In vitro fertilization and adoption were mentioned as my last two possible options for ever becoming a mother.

Then finally, the cure for my blues—Prozac.

I was instructed to go home, pop it, and then I’d perk up.

But there was no percolating. I spent the next several days curled up in my bed like the embryo I was told I had little hope of creating on my own. I was devoid of all feeling. What the hell had happened to me? I was on a downward spiral. I failed to understand how a woman who had so much purpose and zest for life—and who wanted to create a life—no longer possessed the desire, let alone the energy, to face a new day. Was this really a case of depression? The very notion of it paralyzed me with fear. Sure I had my “down” days, who doesn’t? But was medicating my moods the magic elixir?

Eventually my journalistic instincts came to life and kicked into overdrive. My inner gut was telling me there was more to it than the “It’s all in your head” diagnosis. Yes it was in my head, but not in the way others meant. I needed the proof and I finally convinced my exasperated doctors to schedule that MRI.

AFTERSHOCKS ABOUND

Just hours after receiving my meningioma diagnosis, Mark and I met my neurosurgeon for the first time. It wasn’t until the formal introductions were over that I noticed my stark MRI pictures illuminated on the wall—snapshots of my brain. Located in the epicenter of my control center was an unwelcome guest staring back at me in defiance (Fig. 61-1). Stunned but attempting to sweep up those million little pieces, I mustered up some semblance of my trademark sense of humor.

image

FIGURE 61-1 The right temporal meningioma that once occupied my head (transaxial MRI with contrast).

“Well, my husband is a pitcher, but as much as I love him, I never dreamed I’d grow a tumor the size of a baseball to prove it!” I struck out with my weak attempt at a joke.

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