Heads Up!
If you notice increasingly impaired thinking and behavior in someone you love, have them checked for a frontal meningioma
Frontal meningioma bingo
I was diagnosed with a benign frontal meningioma on September 2, 2020. A lesion was found on the covering around my brain that was pressing on my frontal lobe, which governs personality, cognition, memory, communication and emotion. Often called a “silent tumor,” the neurologist said it probably had been there for years, growing slowly and causing gradual personality and behavioral changes over time. On either side of this intruder were two fluid-filled cysts, which doubled the size of the mass to 7.3 centimeters and caused my symptoms to accelerate through 2019 and 2020. I was becoming a shadow of my former self without the self-awareness to recognize it. Sadly, it led to the downfall of my relationship, a devastating blow less than two months before my diagnosis, and might have cost me my job had I not worked for an amazing, caring company.
That the tumor was discovered and successfully removed on September 28, 2020 is thanks to the close-knit circle of family and BFFs who recognized my increasing cognitive deficits and took action. They joined forces to get me to doctors and the all-important MRI and to shield me from undue risks. And not a moment too soon. Even benign meningiomas can be life-threatening if left untreated. It’s no exaggeration to say they saved my life.
I’ve never aspired to be a Cautionary Tale, but if sharing my story can help even one person avoid a similar nick-of-time fate, or worse, a too-late fate, then just call me CT for short.
Postcards from the abyss
My behavior and personality steadily deteriorated over the year and a half before my diagnosis. Zoning out during conversations and while driving. No sense of time or deadlines. A monotone voice and flat affect. A light-is-on-but-no-one’s-home vibe. Hell, the light wasn’t even on. Even my hairdresser Robert, a North Jersey smart-ass, noticed the alarming changes and shared his concern with my BFF Marianne. Since my surgery he has lovingly declared, “the bitch is back.” Damn right she is.
There were subtle everyday lapses (“I forgot” became my middle name) and spectacular scary ones, like going down the shore for a weekend in August 2019 with no money, change of clothes, toiletries…not even a bathing suit. Blanking out on the NJ Turnpike and driving 30 miles past my exit in the fall of 2019. Blowing past the Garden State Parkway ramp on my way home from the shore and driving aimlessly till I saw signs for the Turnpike, a 25-mile detour, in December 2019. Never in my life had I taken the Turnpike home from the shore.
Talk soup
The decline in communication was notable (only to others, not to me). Silence became my default state. I could answer a question, slowly and haltingly, but I couldn’t start a conversation. Trailing off mid-sentence. A dramatically diminished vocabulary. An inability to explain my increasingly illogical actions, both at home and at work. And my general demeanor, according to BFF Kevin, was “vacant.” Our once easy, flowing conversations had become like dental work, i.e., getting words out of me was like pulling teeth.
Twilight zone to danger zone
It got to where I would stand in the middle of a room and stare blankly out the window for minutes on end. I lost all concept of time and started routinely running up to an hour late, instead of my “usual” 10 minutes. I became near childlike in my reliance on others, and lost all ability to be proactive about any aspect of my life.
Also out the window was the care I always took with my appearance, an ear-splitting siren for my first-responder BFFs. Sweats 24/7. No makeup. Messy hair. A giant knot formed that neither I nor Robert could brush out; it had to be cut out. That I would let my crowning glory get to such an unkempt state was the clincher for Marianne. (I’m only half joking.) I gained 20+ pounds eating pizza and takeout every night, as I couldn’t get my act together to plan or cook a healthy meal, nor could I decide when to stop eating once I started. Once I regained my brainpower and willpower, I lost the weight within months.
I was also struggling at my job as a pharmaceutical marketing copywriter. I was not producing my previous caliber of work, couldn’t hit my project deadlines, and was so withdrawn I could not participate in meetings. I recall one tense conversation with a colleague in which I zoned out and just stared at the wall. It was suggested in mid-July that I take a personal leave of absence to sort myself out. I agreed. Little did I know it quickly would turn into a medical leave.
Looking back it was like I had amnesia for all of 2020 and at least half of 2019. After the surgery people would tell me I did and said things that wouldn’t even jog my memory a little. It was like they were talking about someone else.
Things got more perilous. Double vision. Passing out at my desk and smacking my head on the computer. Leaving the stove on after I finished cooking. BFF Cathy, whom I moved in with in July 2020, slapped notes all over the kitchen reminding me to turn off the stove. When Cathy went away one weekend, my sister Leslie came to stay with me. No one wanted me left alone. When I told Marianne I made plans for lunch down the shore, she alerted Leslie, who then secretly asked my cousin to cancel on me. Leslie had also told my son in Boston to say no to my visiting for Mother’s Day. No one wanted me driving alone. I had become a hazard to myself and others.
Let’s get clinical
According to the Mayo Clinic, the growth rate and location of a brain tumor determine the specific neurological symptoms. These can include seizures, headaches, vision problems or memory loss, to name just a few. However, because frontal meningiomas are typically benign and slow-growing, the early signs are more subtle, i.e., gradual cognitive and personality changes. This is why they are often called “silent tumors.” There was no before-and-after event; I wasn’t paralyzed in an accident or rendered mute by a stroke. I “just” declined cognitively over time; intermittently at first, more steadily in the last year and a half.
Busted moves
As the tumor and cysts grew larger I developed physical symptoms not generally governed by the frontal lobe, starting as far back as April 2018. According to Dr. Robert Palumbo, a renowned orthopedic specialist based in Allentown, PA who has diagnosed brain injuries in professional athletes, “Your brain accommodated the slow-growing tumor to a point, but there’s only so much volume in the skull. As your frontal lobe ran out of room it started pressing on other areas of the brain,” he explained. Yoga moves I had mastered became difficult. My balance was shot, my muscles weakened. I needed help getting out of a car. My double vision worsened. I had bladder control and digestive issues. UGH. I was more aware of these physical problems than the cognitive ones, but in my vacuous state I brushed them off to menopause.
When in doubt, check it out
Ladies, until you get a definitive diagnosis, DO NOT blame persistent physical or neurological problems on menopause. Middle-aged women are more than twice as likely as men to develop meningiomas. Evidence suggests that female hormones may play a role.
And don’t let your doctor dismiss them either. A friend’s neurologist recently refused to order an MRI to investigate her worsening migraines, saying, “Have you ever had an MRI? You won’t like it.” As if one gets an MRI for fun. No. If you, or your family or friends suspect cognitive deficits, insist on an MRI. The irony is you may not know you’re experiencing cognitive deficits, because — newsflash! — your thinking is compromised. That’s why your loved ones’ observations of you are so critical, as are yours of them.
Mirror, mirror
I had little-to-no self-awareness. When my boss told me that a colleague was having trouble communicating with me, I was puzzled; I had thought our interactions were OK. I sensed I was struggling though, and vaguely remember that my brain felt like a giant cotton ball. Cathy, a nurse, asked me what I thought was going on with me. “Maybe I have early onset dementia,” I answered without a trace of emotion. (Not sure I still qualify for “early onset,” but I digress.) When my yoga friends asked each week how I was doing, I would report “brain fog” in the same detached tone. Ironically, I was not wrong; I just had no idea how severe it was or how out of it I appeared to others. Two “friends” whispered behind my back that I must be on drugs. Kevin feared I would never be able to work again. I simply could not have pursued diagnosis or treatment on my own. I’m beyond grateful I didn’t have to.
Assess this mess
Once I moved in with Cathy in July 2020, she, Leslie, Marianne and Kevin conspired to get me well and within two months I had a diagnosis. They now had regular access to observe my behavior and a personal chemistry that facilitated their working together. They compared notes and brainstormed (so to speak). Was it Lyme Disease? Vitamin B-deficiency? Tests for both were negative. What else? Scarier possibilities: a silent stroke or progressive brain disease. Marianne told me, ‘We needed one another, no one could help you entirely on his or her own.” Each played a vital role and together they were more than the sum of their parts. As with everything else, I was unaware of their behind-the-scenes confabs. They researched, decided where I needed to go, and got me there.
Once I regained my faculties I asked them, “How did you know I needed a neurologist and not say, a therapist?” Answer: increasing bouts of uncharacteristic behavior and personality changes that evolved into a disturbing pattern. In fact, Marianne consulted a friend who’s a licensed therapist who advised taking me to a neurologist; that started the ball rolling. Everyone has “senior” moments, but when alarming patterns start to emerge, it’s time to check things out. I was lucky that I had amazing people around me, who knew and loved me well enough to know that I wasn’t intentionally being difficult, that something was seriously wrong, and who took swift action.
One for all and all for one
We have all since made a pact — we will keep a close eye on each other and look for signs of trouble. When you have cognitive issues, you may feel that you’re struggling but not understand why. And if it goes on long enough, you may lose the ability to do anything about it on your own. It takes a village. And don’t worry about offending your loved one by voicing cognitive concerns. If you see something, say something. You may be saving their life.
Headlong into life
I was very fortunate that I had a treatable condition and not a progressive disease. That said, there was a small shadow on my 6-month follow-up MRI, most likely scar tissue, a souvenir from my “trip” to the OR. My amazing doctors at the Gerald Glasser Brain Tumor Center at Overlook Hospital in Summit are keeping an eye on it; should it start to grow it could indicate residual tumor. Thankfully three subsequent MRIs have shown no increase; if 2024’s MRI is clean I will only need screenings every two years. It’s a concern, but also a reminder: Live life to the fullest. Every damn day. Don’t put off saying what you feel or doing what feeds your soul. I may have before, but I never will again.
Amazingly I’ve recovered beyond everyone’s expectations, including my own. In January 2020 I started reading a Patti Smith book, “Year of the Monkey” and couldn’t get more than 30 pages in. I couldn’t follow the narrative and blamed her writing. When I picked it up again a couple of months after surgery, I found it charming and enjoyable — an apples-to-apples comparison of how my brain function had improved.
Even those who have known me 20+ years say they’ve never known me to be as articulate, expressive, organized and present as I am now (OK people, don’t look SO shocked). I feel it too. And I’m grateful beyond words.
Yet here I am, writing words galore. Hey, I’m a writer, it’s how I process things. Plus I have my vocabulary and capabilities back, so now I’m able to. Like I said, if these words can help even one person avoid the ordeal that I and my loved ones went through, then here they all are, on a silver platter. Love, CT
