Meningiomas: A Patient’s View

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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:

“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.

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.

This wasn’t Leno or Letterman material; it was serious brain business. I was told clinically and matter-of-factly that I didn’t have cancer. A relief, yes, but I was still hung up on that dreaded “c” word. I was also told that meningiomas are mostly benign and the episodes I’d been experiencing were simple partial epileptic seizures. Then the bombshell dropped—it was sheer luck I’d even walked into his office. The size and seriousness of my tumor was so great it was nothing short of a miracle I hadn’t already slipped into a coma—quite possibly for good. My only option was surgery and the tumor had to be removed as soon as possible. I wasn’t a candidate for less invasive procedures like CyberKnife or radiation. We were talking major excavation all the way.

After a crash course on craniotomy and all the gory details and risks it involved, I was instructed to return in a week’s time for my own craniotomy lesson.

As well, I was prescribed a cocktail of antiseizure drugs to control the seizures and steroids to prevent brain swelling before and after surgery.

In the days leading up to my surgery, it felt like I was struggling through a slow moving fog. Foggy from the diagnosis. Foggy from the meds I’d been prescribed. Foggy from trying to make sense of it all. I was on autopilot—incapable of expressing anything comprehensible. How do you make sense when a senseless anomaly has overtaken your control center and shoved it to the far recesses of your mind? I didn’t have the answers.

Finally, it was time to crack me open and perform a search and rescue mission unlike any other. I was under, but hopefully not under and out. Twelve hours later, that mission was miraculously and successfully accomplished.

I was tumor free and discharged only six days later to start my life over as a meningioma survivor. I wondered how I would rebuild my life as I once knew it? My craniotomy excavating team excelled at removing the meningioma, but recovering from the aftermath of their work was my burden.

Even with a fantastic support team, recovery was far from a walk in the park. I longed to return to my life as I once knew it—writing, traveling, not giving a second thought to whether I or not I should indulge in a walk or hike, training my new yellow Labrador puppy, scheduling activities with family and friends. However, I lacked the physical energy. Concentrating long enough to engage in my favorite activities such as reading and writing—passions and work that defined my very existence—was far too overwhelming. For months I avoided both.

I grew tired of being told:

“You’re still healing.”

“Give it time.”

“You’re putting too much pressure on yourself.”

Sound advice maybe, but I desperately wanted to be restored, whole, the person I’d known and liked all my life—ME.

Like a city after an earthquake where all traces of disaster are swept away and discarded, the true rebuilding had yet to begin. Physically, I was healing:

My upside-down question mark scar—less noticeable day by day.

Swollen shut eye—slowly reopening.

Postsurgical swelling and bruising—diminishing and fading.

Sluggish gait—picking up the pace.

However, my broken spirit had yet to be repaired.

SEISMIC SHIFTS

Before rejoining Mark, who was now playing for the Phillies’ organization, I asked for a final clearance from my neurosurgeon before heading east. My postop MRI indicated all was looking good and I took comfort from his words, “In only one percent of cases is there ever a setback.” As well, I only had a few more months to go before I could permanently bid adieu to my antiseizure regimen that left me lethargic and hungry. I was finally healing and moving on with my life. My tectonic plates were slowly shifting back into place with my brain reacclimating to the space formerly occupied by my tumor.

However, just a month after reuniting with Mark in Pennsylvania and four months into my recovery, I became that “one percenter” when I literally sprung a leak from my incision site. Great, now my newly rebuilt infrastructure was already showing signs of weakness.

Once again, everything shifted under me. How was it possible to be struck by lightning twice? Even with the unlikely chance of something going wrong, I didn’t think it could happen to me. Seriously, there’s a warning label on everything these days:

Starbucks coffee—may overstimulate you.

Blow dryers—may fry hair.

Comedy Central—may offend your sensibilities.

But none of those had ever happened to me and in any case, there wasn’t a stamp on my half shaved noggin’—may require further excavation.

Mark rushed me to a neurosurgeon in Philadelphia who immediately suspected a cerebrospinal fluid (CSF) leak. Sounded like a simple plumbing job to me—plug the hole and be done with it. But it was far more complicated than that. I totally cracked when I was told I couldn’t accompany Mark on the road, but instead had to be admitted into hospital to have surgery the next morning. All I could think about was the child I wanted to have and that there was no way I could possibly endure another craniotomy. Unlike Nike, I just didn’t want to do it, but I had no choice—the plumbing had to be fixed.

Thankfully, this time round, the surgery to drain the excess CSF wasn’t as invasive as the first and I was discharged the next day. Emotionally though, I was fried, toast, done—stick a fork in me. Just as I thought I was getting me back, I was blindsided by this unforeseen setback and I’d felt like I’d been kicked in the guts twice now. Loved ones reminded me how strong I was, but this had nothing to do with inner strength. You can replace a shattered window, but all the spackling in the world or a trip to Home Depot can’t patch up a damaged psyche.

When I was well enough to travel, Mark and I agreed it was best for me to be in the familiar surroundings of our own home back in Colorado. Thankfully, I hadn’t experienced another seizure postop so my doctor felt comfortable slowly weaning me off my seizure medication. Almost immediately, I noticed a remarkable change in my energy levels. The sluggishness dissipated and I started getting my mojo back. Then, after a year-long hiatus, my MIA menstrual cycle made a spectacular comeback. I never thought I’d welcome cramps into my life again. It seemed like the pieces of my life were finally falling back into place.

As the tumultuous year drew to a close, I underwent my routine ob-gyn annual exam. My stomach sank when my doctor called me later that day. I feared it was bad news again, but it was far from that—I was pregnant. And all achieved without medical intervention. I was ecstatic that I was going to be a mother after all. I broke down with tears of elation, joy, relief. I wasn’t overly concerned that, because of my history, I was considered high risk and would have to be closely monitored. I was also fully aware that the surge of hormones during pregnancy could further stimulate my progesterone positive meningioma, but having a child—especially one conceived naturally after what I’d endured—was a risk I was willing to take. I rationalized if it had taken at least a decade for my meningioma to announce its presence; another growth would surely be detected before it grew out of hand.

The following September Hannah arrived, followed two and a half years later by her brother Hunter—both miracles. Their presence reassured me that there was a rich and beautiful life to lead and enjoy after a meningioma diagnosis, especially as my surging hormones hadn’t messed with my upstairs furniture. However, there was the unexpected and unwelcome return of my seizures during that time. Hadn’t I endured enough already? When was this meningioma madness going to end? I was sick and tired of it ruling every aspect of my life.

I thought I’d come to terms with my diagnosis, but it was becoming increasingly apparent that I’d never afforded myself the luxury to truly assess the meningioma aftermath and accept the new “normal” me with life-long deficits:

Epilepsy

Chronic fatigue

Persistent and excruciating facial pain

Mood swings

I have now reached that level of acceptance. I can’t escape the fact that I had a brain tumor, which has irrevocably changed my life. Even though I am reminded of it constantly and live with the fear that it could return, I no longer allow myself to be owned by it. If the Big One should ever strike again, I know I am better equipped to handle the aftershocks.

Having said all that and physical challenges aside, the most difficult aspect of this journey is my perceived wellness and battling the benign meningioma stigma.

Some of the comments I have received and still do—even from those within the medical community who should know better—diminish what I’ve been through and continue to face:

“Gee Liz you look fantastic, everything must be fine now.”

“Meningiomas are very benign lesions.”

“You’re sooo lucky you got the good one.”

“You haven’t done anything all day, how can you still be tired?”

“Stop obsessing about it; you’ve had the surgery and it’s over.”

“Enough dealing the brain tumor card.”

Even though I am healed on the surface, I am far from healed underneath and doubt I ever will be. I believe my brain tumor has spawned an extended family of second and third cousins with interrelated health issues. For instance, within months after my son’s birth, I was hit with a knock-me-down fatigue, which I knew was something far more than being a sleep-deprived mother of two. However, once again I was dismissed as an overworked, overstressed mother, but at least this time blood tests were ordered. The results revealed I had Hashimoto’s disease and hypothyroidism. Whether or not it’s related to the meningioma, no one knows for certain, but I can’t help but think it has to be.

The rest of my life will be a never ending carousel ride of doctors’ appointments and follow-up tests. If my yearly data planner isn’t booked with the neurosurgeon or neurologist, then it’s the radiologist, endocrinologist, pharmacologist, gynecologist, urologist, and dermatologist. I’m ologist-outed.

Not only that, as each new year begins, there’s always the annual MRI to check whether the fault line is stable. I can survive the 45 minutes in the tube; the rubbing alcohol taste in my mouth courtesy of the gadolinium, and the jackhammer construction crew symphony. It’s the waiting game afterwards—until hopefully I’m told I’m clean, clear, and free to breathe again until next year—that I absolutely dread. Although I’ve learned not to obsess over it, that fear is always in the back—well in my case the front— of my mind.

Unfortunately, one year that fear proved valid when, due to an administrative bungle, I was faxed a copy of my MRI results before my neurosurgeon could discuss the report with me. As the pages spewed out of the fax machine, the words, POSSIBLE NEW GROWTH AND WORRISOME jumped off the page at me. Unbelievably, I couldn’t get into my neurosurgeon for a week. Those seven days dragged interminably—some of the worst of my life—until I was reassured by him that the report didn’t reflect what he’d seen with his own eyes and I was given the all clear.

It’s a sad fact though that the annual “all clears” will never eradicate my fear of reoccurrence. Whether it’s a random ache or twinge, it’s a given that I can’t help but think, “Oh my God the tumor is back.” I thought the very same on one occasion when, for the first time since my surgeries, I started experiencing headaches on a frequent basis.

The irony of it was that I’d wished I could have blamed the usual suspects—PMS, stress, lack of sleep—for the headaches, like my doctors had previously done. But nooo, I convinced myself that the questionable area, which had been highlighted on previous scans, was in fact residual tumor and it was coming back with a vengeance. My annual MRI wasn’t due for months, but I couldn’t tolerate not knowing for sure. I had to have immediate peace of mind, which is priceless. My neurosurgeon recognized my need for reassurance and to rule out the “what ifs” and scheduled an MRI within days. The results were clean and clear—thankfully, in this case, it was the usual suspects and nothing sinister. Knock on wood that will always be the case.

During my own experience traversing the meningioma mine field, the meningioma survival strategies below have proved to be lifesavers for me:

• Research. Send a list of questions to doctors before the appointment as it allows them the time to prepare in advance. If necessary, enlist a friend to do the legwork and if possible, accompany you. The worst feeling in the world is to walk out of a doctor’s office and say, “I wished I had asked that.” Don’t leave that doctor’s office until all questions are answered to your satisfaction with a clear understanding of all treatment options and possible outcomes of those choices.

• Advocate and trust your inner voice. Don’t be afraid to ask for an MRI or any other tests if you are experiencing worrying symptoms. You may feel you’re a hypochondriac like a Woody Allen character, but the most important thing to have is peace of mind. In the same vein, ask for a second opinion if unhappy or unsure about what treatment path to follow.

• Find the right shoe size—seek out people who have traveled the same road. I can’t emphasize this enough. Patients cope so much better knowing others understand what they are going through. It is normal and expected that you will run the gamut of emotions from extreme highs to rock bottom lows. One day you can feel as if you’re on top of the world and the next, you want to retreat from that world.

• Chuck guilt out the window. Don’t apologize for the new you nor think you’re selfish if you put your needs first because you can no longer accomplish what you used to before your meningioma. There is an inherent learning curve adjustment period and it’s different for every patient.

• Don’t lament the “can’t do’s” but rather concentrate on the “can do’s”. Once I accepted my brain tumor reality, it freed me to focus my energies on what I could do, rather than waste them on trying to do what I couldn’t.

• Communicate with your caregivers—they are not mind readers. Let them know what you need to improve your care. Be up front. Share your concerns. If you need time on your own, rather than bottling it up and lashing out at them later, discuss expectations ahead of time. Articulate your needs. If a massage is going to help you sleep, ask for it. If you are tired of being doted on, say so.

• Laugh at yourself. Everyone can benefit from a dose of brain tumor humor. Don’t beat yourself up over the head when you can’t find your car in the parking lot or you make dinner only to discover the oven was never turned on in the first place.

• Listen to your body. I believe once you’ve had your upstairs furniture rearranged, it will never have the same look and feel. Think of it as Extreme Makeover: Home Edition for your brain. You have to listen to your body’s signals. If it’s screaming at you to slow down, then heed its call. Don’t try and push past your body’s limits, especially during recovery after surgery, chemo, or radiation. If you do, you’ll pay for it the next day and maybe beyond.

• Use any tools available to cope with deficits you may have and make no apologies or feel embarrassed for having to do so. For instance, I e-mail myself “to do” reminders. I have an overflowing inbox from myself.

• Vocalize. A meningioma radically alters your life and of course you have questions, fears, worries, concerns. Communicate these, especially with those who have already walked in your shoes.

• Finally, be prepared for relationship shifts, some not so good. Invisible deficits often erect insurmountable barriers, which can wreak havoc on relationships. I’ve lost friends because they can’t accept the new me or understand the daily struggles I face. Bottom line, don’t suffer in silence or allow others to minimize what you’ve been through.

Today, my life revolves around my family and my nonprofit organization, Meningioma Mommas—an online support forum for all those affected by meningiomas—and my writing and speaking career. My second chance has given me a voice to educate, empower, and connect patients, which hopefully softens the shock of their meningioma journeys.

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Meningiomas: A Patient’s View

WHEN THE BIG ONE HITS

AFTERSHOCKS ABOUND

SEISMIC SHIFTS

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Meningiomas: A Patient’s View

WHEN THE BIG ONE HITS

AFTERSHOCKS ABOUND

SEISMIC SHIFTS

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