Before the Sun Rises...

Ex-roommate!

It was 12 years ago today, but it still feels like that morning. A damp, cold, gray, Colorado winter morning when the sun had yet to rise and peak through my shutters stirring me from sleep. Instead, the high pierced shrill of a phone performed the sun’s daily ritual.

With receiver pressed firmly against my ear, an uneven, sterile voice greeted (if you could call it that) me. The unfamiliar, gravelly voice delivered a fate I still carry to this day and will until my last breath.

It only took four words.

“You have a meningioma,” the hollow voice uttered.


“A whaaaat?!” I stuttered back.


“A BRAIN TUMOR,” the voice continued, sending chills down my spine.


How do you even spell that I wanted to know as I desperately rifled through my nightstand drawer in search of a pen, a pencil—ah, heck my Mac Spice lip liner would do.


Men-in-gioma sounds more like a group of guys test-driving the latest foreign import, with all the bells and whistles, not to mention the 2.9% available financing option.


If only it could have been that simple.


The line went dead.


But surely it was me who was dead. I had become that damp, cold, gray Colorado winter morning.


Just hours later, I sat in horror as my newly appointed neurosurgeon explained the MRI I’d had the night before. Never-before-heard terms soared over my head.


Middle third sphenoid wing meningioma.

Cavernous sinus.


Lateral ventricular compression.


You’d have to be a brain surgeon to understand any of this stuff. Thankfully, the man in the overly starched, white lab coat standing in front of me was.


I forced myself to look at the snapshots of my illuminated brain. Images of a baseball-sized mass glared back at me in defiance. My husband was a major league ballplayer at the time, but I never imagined I’d be looking at the equivalent size of one in my head. Surely there had been a mix up. I was healthy, only 32 and trying to start a family. Maybe this explained my struggles to become pregnant the past year.


“You’ve probably had this tumor for over a decade,” my neurosurgeon solemnly announced.


“A decade!” I choked. I had had a “roommate” living inside of my head for 10 years? The only roommates I ever recalled having were back in college and graduate school, who shared their English Lit notes with you and gave you aspirin and a glass of water after a night of one too many beers.

I couldn’t get out of my head the Kindergarten Cop scene in which Arnold Schwarzenegger shouted, “It’s not a tumor!” I so wanted to believe this. But this wasn’t a fictional movie.

It was real life and it was mine. Surgery would be long and risky, but I didn’t have a choice. In just 8 days I would have a word I never thought would be in my vocabulary--a craniotomy.

To be continued...

p.s. And instead of a damp, cold, gray morning....we're in the middle of a blizzard!

On My Mind...

It wasn’t until a doctor matter-of-factly informed me I was incapable of having children that the desire to become a mother took a deeper hold. Apparently, growing a massive meningioma brain tumor for a decade--if not longer—was the source of my infertility during my early 30’s. Even after the successful removal of the tumor, doctors maintained their diagnosis. But I was even more determined to have the title of mom bestowed upon me despite having two craniotomies.

Miraculously, nearly a decade ago I proved the medical profession wrong when I finally became a mother with the arrival of my daughter, Hannah. Then, 2 ½ years later my son, Hunter completed our family with his early, but thankfully healthy debut.

Ever since I became a mother, I’ve made it my personal mission to increase meningioma awareness and fund research, especially since meningiomas are the most prevalent primary brain tumor with the majority of them affecting women. However, just like other incurable diseases, men and children from all walks of life aren’t immune from brain tumors. And when someone is told, “You have a brain tumor,” it could be an astrocytoma, glioma, medulloblastoma, or schwannoma to name just a few of the more than 120 brain tumors.

Most are familiar with the more prominent people who have fortunately survived a brain tumor like actors Elizabeth Taylor(RIP) and Mark Ruffalo and recognize the names of those who have sadly lost the brain tumor battle including Ted Kennedy, Tug McGraw and Gene Siskel.
But what about the names you don’t read or hear about like your neighbor or the younger sibling your son plays baseball with unexpectedly stricken and often in the prime of their lives?

Sadly, this insidious disease doesn’t get the press, awareness nor funding it merits. Brain tumors are the leading cause of death in children under 18 and 190,000 children and adults will be diagnosed with one this year alone.

However, hope is on the horizon. The formerly celebrated National Brain Tumor Awareness Week during the first week of May has now merited an entire month to further advance its educational reach while remembering lives lost.

This Mother’s Day not only will I celebrate a decade of raising a healthy daughter and son, but I will continue to have hope that there will no longer be the need for an awareness month or even day for any type of brain tumor.

Simply Remove Meningioma=Cure!

Dear Dr. Sanjay Gupta,

I take great exception to your recent Twitter tweet.

"this is a meningioma, a benign brain tumor. once removed, patient is cured."

Who knew it was that simple?

I've responded to your blog, but my letter must still be under moderator consideration as it has yet to post. Allow me to share with you now.

I shouldn't even be writing to you today. Ten years ago, my neurosurgeon informed my husband and me that my baseball sized meningioma should have already put me in a coma and killed me.

As a 10-year meningioma survivor and the founder of the nonprofit, Meningioma Mommas, I can assure you that the thousands of patients we've provided support to would disagree with your inaccurate statement, " this is a meningioma, a benign brain tumor. once removed, patient is cured."

No wonder we have such a struggle getting media attention and funding for this most common primary brain tumor. Dr. Gupta, this is your perfect opportunity to feature meningioma on an upcoming show. I'll be more than happy to put you in touch with thousands of patients, caregivers and family members (and those who have lost a loved one to a so called benign meningioma) who are affected by this disease. I can't think of a better time to educate the world about meningiomas and the more than 120 brain tumors there still is no cure for than during the month of May, which is also the 2nd Annual Brain Tumor Awareness Month.

I also invite you to attend Meningioma Awareness Day in Boston on Oct. 2 where you can meet face to face with hundreds of "cured" patients.

It is a miracle I am alive, but I would hardly consider myself cured especially by the numerous deficits my meningioma has caused. And I am one of the lucky ones.

I look forward to your reply.

Sincerely,
Liz

p.s. If you do read my letter, I urge you to read the following feedback to your tweet from other "cured" meningioma survivors:


"My sister has had 4 meningiomas, I have only had one. Cured after one?"

"If he can't explain himself properly then he should not say anything as it is misleading at the best."

"My daughter has had 2 craniotomys and an additional surgery to implant a VP shunt due to getting Meningitis in the hospital?? We go every 3 months for an MRI. He needs to make a public correction!!!"

"Cured from what?? How unfortunate that he would state something so misleading and insensitive."

"So does that mean my second one wasn't real?? And when they say it will come back that its a lie??? Wow obviously this person has never had or had a loved one deal with this since he can dismiss it so easily!!"

"A prime example of why medical doctors should not use Twitter!!!"

"If I still have 30% of my tumor left and have to endure yearly MRI's would he consider that a cure?"

"How is it possible to be cured if they are unable to remove all of the tumor because it is on your brain stem. Why would we need MRI's yearly if we are cured? Is he saying then that all other doctors that are having us get the MRI's are doing so when there is absolutely no reason to do so (wouldn't that be against their oath?) If the deficits we have, the remaining tumors we have, the regrowths some have are his definition of cured I am afraid that he did not understand anything taught in medical school. The questions we all have when diagnosed and thereafter send us to the Internet in search of understanding. It is a shame that some very unaware and fearful people may end up linking to his FALSE information. I look forward to nothing less than his retraction and apologies for his grossly inaccurate statements."

"What an irresponsible statement for a physician to make. If I was cured 11 yrs. ago after my 1st craniotomy, why did I need Gamma Knife, then 5 yrs later IMRT, then last year a second surgery for three new tumors??? Glad he's not my doctor!!!"

"Why does my left side not work and I have seizures? Makes me angry!"

"Definition of Cure from medterms.medical dictionary

Definition of Cure

Cure: 1. To heal, to make well, to restore to good health. Cures are easy to claim and, all too often, difficult to confirm.
2. A time without recurrence of a disease so that the risk of recurrence is small, as in the 5-year cure rate for malignant melanoma.
3. Particularly in the past, a course of treatment. For example, take a cure at a spa.

The word cure comes from the Latin cura meaning care, concern or attention. The current use of the word cure is believed to reflect the belief that the right care, concern and attention were tantamount to a cure.

Me thinks the good doctor might want to reread his Latin definition for "cura".

"Strange that he thinks seizures, deafness, blindness, etc. etc. are not issues. Must have a 2 month online medical degree."

"Apparently this Dr. never had a family member have this experience..I am 20 months since surgery and deal with sensory and language issues that have completely turned my life in side out. still trying to figure out who I am."

"Really did he ACTUALLY type cured?????"

"I only wish that was true. I am still struggling almost a year after the mass was removed."

"I really wish that was true.. My surgery was almost 2 years ago , I am still having set backs!!!!"

"It is beyond irresponsible for a NS who sees himself as The Great Educator to spread this kind of misinformation when research on this incurable, unpreventable disease is grossly underfunded. To be honest, when I read his tweet I threw up a little bit, in my mouth.

The degree of ignorance about M's amongst NS's is just so frustrating. We see the results of it...day after day with patients being told their symptoms have nothing to do with their brain tumor. What is going on in medical schools? Are they using outdated textbooks? Is it because M's aren't sexy-exciting like lethal GBM's? Is it because they think it's "a women's disease" so they don't care? All of the above?

We have to fight misinformation at every turn, and with ignorance so prevalent it does get tiresome sometimes, but this one, (from the NS who almost became US Surgeon General no less!) is particularly egregious."

"Walk a mile in our meningioma moccasins."

I can finally say...

Whoooooooooooooooooooo hoooooooooooooooooooooooooooooooo! I'm a 10-year meningioma brain tumor survivor.

Ten years ago today I was granted a second chance at life. This sums it all up.