Meningioma Monday...

8-9-99--6-11-12

In honor of my boy...

"A dog doesn't care if you're rich or poor, educated or illiterate, clever or dull. Give him your heart and he will give you his."--John Grogan

It is with a heavy heart that I share my Koufax passed away peacefully today. 

I was lucky to have such a wonderful big lug of loyal love enrich my life for the last 12 years & 10 months.

Koufax was a companion and my champion canine caregiver encouraging me every step of the way during both of my meningioma recoveries.

He was an easy subject to often write about with his quirky ways.

http://www.lizholzemer.com/upload/Koufax%20My%20Crutch.pdf

http://www.lizholzemer.com/upload/Healing%20Hound.pdf

http://petphotographerrowe.com/doc-koufax-reunion/

I always appreciated your support when it was my turn to take care of him the last several years when diabetes and blindness throw a few more curve balls our way.

We both were damn lucky to get second chances.

Meningioma Monday...

What's in a name?!


Many of us like to name our meningioma invaders; others not so much.
I have always referred to mine as the uninvited roommate overstaying its welcome. 


For some, bestowing a name upon their tumor has given them a sense of control. 
For others, a few choice words is what's needed most.


Over the years, Meningioma Mommas' second family members have shared the following:


Fred
Monster
Spike
Draco
Fat bastard
Tina Tumor
Mini
Puffed up muffin
Get the fuck out
Spot
The Toad
Squatter
PITA
Willie because he's always on my mind
Maleficent
Bug
Rock
Minnie me
The Beast
Little hitchhiker
Martha
Fred  I want you dead and out of my head
Airhead
Dopey ,Sneezy, Happy, Sleepy, Grumpy, Bashful, Doc--yes, there are seven
Freddy the Freeloader


How about you? 


To name or not to name?

Meningioma Monday...

It's easy to let all the accompanying baggage of a meningioma bog us down so I thought I'd pass along an exercise one of my Meningioma Mommas shared with me. No heavy lifting to worry about--this one allows you to release mental steam. Enjoy and if you have a chance, share yours.






WHAT A MENINGIOMA CANNOT DO!!!!

It cannot cripple _________________.

It cannot shatter__________________.

It cannot corrode__________________.

It cannot destroy___________________.

It cannot kill_______________________.

It cannot suppress___________________.

It cannot silence_____________________.

It cannot invade______________________.

It cannot steal_______________________.

It cannot conquer_____________________.

Meningioma Monday...

Just because we have a meningioma doesn't mean it has to quash our creativity. 

Try your hand at a meningioma inspired haiku.

In case you don't remember, a haiku is 5 syllables, 7 syllables, 5 syllables.

OK, I'll start:

Uninvited guest
Celebrating twelve years clean 
Dusty welcome mat

Meningioma Monday...

Now that we've sprung forward, that's one less hour to deal with a meningioma--the diagnosis, recovery, ongoing journey. 

With spring quickly approaching, how do you plan to further advance your healing and new lease on life?

Don't be shy, share.

Thank you!

Meningioma Monday...

"Self-sacrifice is the real miracle out of which all the reported miracles grow."--Ralph Waldo Emerson

I have no idea what it's like to be one, but I do know my own meningioma recovery wouldn't have been possible without the many who took care of me. They shoulder our burdens, take on our worries, toss and turn on our behalf, advocate when we're unable to and so much more.

When was the last time you thanked a caregiver? If you can't recall, how about now?

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!

Meningioma Monday...

"You have a meningioma."

"A wh-what?" I stuttered.

"How do you even spell that?"

"Men-in-gioma sound more like a group of guys test-driving the latest foreign import with all the bells and whistles, not to mention the 8.9 percent available financing option."--From intro to Curveball: When Life Throws You a Brain Tumor (Ghost Road Press)

So what exactly is this tongue twister that also happens to be the most common primary brain tumor?!

Today's Meningioma Monday features an excellent primary on meningioma. Now if I could just pronounce it properly after all these years!

Thank you to Brigham and Women's Hospital.

What is a meningioma?



A meningioma is a type of tumor that develops from the meninges, the membrane that surrounds the brain and spinal cord. There are three layers of meninges, called the dura mater, arachnoid and pia mater. Most meningiomas (90%) are categorized as benign tumors, with the remaining 10% being atypical or malignant. However, the word "benign" can be misleading in this case, as when benign tumors grow and constrict and affect the brain, they can cause disability and even be life threatening.

 In many cases, benign meningiomas grow slowly. This means that depending upon where it is located, a meningioma may reach a relatively large size before it causes symptoms. Other meningiomas grow more rapidly, or have sudden growth spurts. There is no way to predict the rate of growth for a meningioma, or to know for certain how long a specific tumor was growing before diagnosis.

 Most people with a meningioma will only have a tumor at only one site, but it is also possible to have several tumors growing simultaneously in different parts of the brain and spinal cord. When multiple meningiomas occur, more than one type of treatment may have to be used.

 Meningiomas vary in their symptoms and appropriate treatment options depending on where they are located.


A primary brain tumor originates in the central nervous system, while metastatic brain tumors spread to the brain from other parts of the body. Meningiomas account for about 27% of primary brain tumors, making them the most common of that type.


Who is at risk?


Meningiomas are most common in people between the ages of 40 and 70. They are more common in women than in men. Among middle-aged patients, there is a marked female bias, with a female: male ratio of almost 3:1 in the brain and up to 6:1 in the spinal cord. Meningiomas are very rare in children, with pediatric cases accounting for only 1.5% of the total.


How is the diagnosis made?


Meningiomas may cause seizures, headaches, and focal neurological defects, such as arm or leg weakness, or vision loss. Patients often have subtle symptoms for a long period before the meningioma is diagnosed. Sometimes memory loss, carelessness, and unsteadiness are the only symptoms.





How are meningiomas classified?


Meningiomas were originally classified into 9 major subtypes based on their structure and form. However, more recently it’s become more common to group them into three major classes, or not to distinguish subtypes at all. Multiple classifications exist today, but the most commonly used is the World Health Organization’s (WHO) "Classification of Tumours of the Nervous System," most recently updated in 2000. The WHO 2000 Classification of Meningiomas is located here.


What difference does the location of the tumor make?


Convexity meningiomas


These grow on the surface of the brain, often toward the front. They may not produce symptoms until they reach a large size. Symptoms of a convexity meningioma are seizures, focal neurological deficits, or headaches.




Falx and Parasagittal meningiomas


The falx is a groove that runs between the two sides of the brain (front to back), and contains a large blood vessel (sagittal sinus). Parasagittal tumors lie near or close to the falx. Because of the danger of puncturing the blood vessels, removing a tumor in the falx or parasagittal region can be difficult. Large parasagittal meningiomas may result in bilateral leg weakness.


Olfactory groove meningiomas


Olfactory groove meningiomas grow along the nerves that run between the brain and the nose. These nerves allow you to smell, and so often tumors growing here cause loss of smell. If they grow large enough, olfactory groove meningiomas can also compress the nerves to the eyes, causing visual symptoms. Similarly, meningiomas growing on the optic nerve can cause visual problems, including loss of patches within your field of vision, or even blindness. They can grow to a large size prior to being diagnosed due to changes in the sense of smell and mental status changes being difficult to catch.


Sphenoid meningiomas


Sphenoid meningiomas lie behind the eyes. These tumors can cause visual problems, loss of sensation in the face, or facial numbness. Tumors in this location can sometimes involve the blood sources of the brain (e.g. cavernous sinus, or carotid arteries), making them difficult or impossible to completely remove.


Posterior fossa meningiomas


Posterior fossa tumors lie on the underside of the brain. These tumors can compress the cranial nerves causing facial symptoms or loss of hearing. Petroclival tumors can compress the trigeminal nerve, resulting in sharp pain in the face (trigeminal neuralgia) or spasms of the facial muscles. Tentorial meningiomas or those near the area where your spinal cord connects to your brain (foramen magnum) can cause headaches, or other signs of brain stem compression like trouble walking.


Intraventricular meningiomas


Intraventricular meningiomas are associated with the connected chambers of fluid that circulate throughout the central nervous system. They can block the flow of this fluid causing pressure to build up, which can produce headaches and dizziness.


Intraorbital meningiomas


Intraorbital meningiomas grow around the eye sockets of your skull and can cause pressure in the eyes to build up, giving a bulging appearance. They can also cause an increasing loss of vision.


Spinal meningiomas


Spinal meningiomas account for less than 10% of meningiomas. They tend to occur in women (with a female/ male ratio of 5:1), usually between the ages of 40 and 70. They are intradural (within or enclosed within the dura mater), extramedullary (outside or unrelated to any medulla) tumors occurring predominantly in the thoracic spine. They can cause back pain, or pain in the limbs from compression of the nerves where they run into the spinal cord.


How common is each location?


Falx or parasagittal 25%


Convexity 20%


Sphenoid wing 20%


Olfactory groove 10%


Supresellar 10%


Posterior fossa (petrosal) 10%


Intraventricular 2%


Miscellaneous (e.g., optic nerve, clivius) 3%


What factors predispose people to meningiomas?


The only known predisposing factors associated with meningiomas are exposure to radiation, and certain genetic disorders (e.g. neurofibromatosis). Some have reported an association between meningiomas and the site of a previous injury (e.g. head trauma). However, the relationship with previous head injury isn’t well understood. Some have suggested that viruses may play some role as well, but this is unsubstantiated at this point.


Meningiomas are also more common in women than in men, and have shown increased growth during pregnancy. They have hormone receptors and progesterone and estrogen may play a role in their development, but that role is still unclear.


Previous Trauma


Meningiomas have been found at the site of previous trauma (such as near a previous skull fracture, scarred dura, or around foreign bodies), but the relationship isn’t fully understood.


Radiation


Exposure to radiation has been found to be associated with a higher incidence of meningiomas. For example, survivors of Hiroshima have an increased incidence of these tumors. The more recently developed methods of delivering radiation therapy that use focused beams help to limit unnecessary exposure to areas outside the target, and so are expected to be safer. Patients who have undergone broad radiation treatments in the past should take care to watch for symptoms and monitor themselves for meningiomas. Meningiomas caused by radiation exposure are generally more aggressive.


Genetic Predisposition


People with a genetic disorder known as neurofibromatosis type 2 (Nf2) are more likely to develop meningiomas. Of people with malignant meningiomas, a higher percent have mutations in NF2.


There are some genes that may act as tumor suppressors, and the lack or deletion of these genes may make people more susceptible to tumors. For example, patients with Nf2 are, unfortunately, more likely to develop meningiomas because they have inherited a gene which has the potential to cause normal cells to become cancerous.


Viruses


There is a possibility that viruses may be related to meningioma formation, but the relationship is not defined.


What are the indicators of a good or less good outcome?


Age


The age of the patient at the time the tumor is removed influences outcome. Younger patients tend to do better after surgery than older patients do do. However, older patients in otherwise good health should not assume that their chances of a good outcome are diminished.


Tumor location and accessibility


People with tumors that invade the brain tend to do more poorly than patients with tumors that do not invade. Similarly, people with tumors on the outer surface of the brain (convexity) tend to better than those with tumors that are difficult to access, like those on the undersurface of the brain, in regions adjacent to important structures like those needed for breathing or movement, or near large blood vessels. Incomplete removal of the tumor, which is usually due to limitations caused by the location of the tumor, is associated with a higher chance of tumor recurrence. Residual tumor cells are a potential source of new tumor growth.



Extent of removal


The major clinical factor in recurrence is the extent of resection/ removal. How completely the surgeon is able to remove the tumor is highly affected by the location of the tumor, whether it is adjacent or attached to anything else, and the age of the patient.


Survival estimates show a marked difference when grouped by type. Benign meningiomas have the highest survival rate, followed by atypical meningiomas and then malignant.


Age at the time of diagnosis is also indicates an increased chance of survival. The younger patients have better survival rates.


Brain invasion indicates an increased chance of recurrence. Brain-invasive benign meningiomas act like atypical meningiomas overall.




http://www.brighamandwomens.org/Departments_and_Services/neurosurgery/Meningioma/Meningiomafacts.aspxDiagnosis is made by a contrast enhanced CT and/or MRI (magnetic resonance imaging) scan. While MRIs are in some ways superior, the CT can be helpful in determining if the tumor invades the bone, or if it’s becoming hard like bone.

Location, location, location!

You've just been diagnosed with a meningioma and one of your first questions is how could my tumor's location impact me?

The following information will help! Thank you www.braininjury.com

A wide variety of symptoms can occur after "brain injury." The nature of the symptoms depends, in large part, on where the brain has been injured. Below find a list of possible physical and cognitive symptoms which can arise from damage to specific areas of the brain:


Frontal Lobe: Forehead

Loss of simple movement of various body parts (Paralysis).
Inability to plan a sequence of complex movements needed to complete complete multi-stepped tasks, such as making coffee (Sequencing).
Loss of spontaneity in interacting with others.
Loss of flexibility in thinking.
Persistence of a single thought (Perseveration).
Inability to focus on task (Attending).
Mood changes (Emotionally Labile).
Changes in social behavior.
Changes in personality.
Difficulty with problem solving.
Inability to express language (Broca's Aphasia).

Parietal Lobe: near the back and top of the head

Inability to attend to more than one object at a time.
Inability to name an object (Anomia).
Inability to locate the words for writing (Agraphia).
Problems with reading (Alexia).
Difficulty with drawing objects.
Difficulty in distinguishing left from right.
Difficulty with doing mathematics (Dyscalculia).
Lack of awareness of certain body parts and/or surrounding space (Apraxia) that leads to difficulties in self-care.
Inability to focus visual attention.
Difficulties with eye and hand coordination.

Occipital Lobes: most posterior, at the back of the head

Defects in vision (Visual Field Cuts).
Difficulty with locating objects in environment.
Difficulty with identifying colors (Color Agnosia).
Production of hallucinations.
Visual illusions - inaccurately seeing objects.
Word blindness - inability to recognize words.
Difficulty in recognizing drawn objects.
Inability to recognize the movement of object (Movement Agnosia).
Difficulties with reading and writing.

Temporal Lobes: side of head above ears

Difficulty in recognizing faces (Prosopagnosia).
Difficulty in understanding spoken words (Wernicke's Aphasia).
Disturbance with selective attention to what we see and hear.
Difficulty with identification of, and verbalization about objects.
Short term memory loss.
Interference with long term memory.
Increased and decreased interest in sexual behavior.
Inability to catagorize objects (Categorization).
Right lobe damage can cause persistent talking.
Increased aggressive behavior.

Brain Stem: deep within the brain

Decreased vital capacity in breathing, important for speech.
Swallowing food and water (Dysphagia).
Difficulty with organization/perception of the environment.
Problems with balance and movement.
Dizziness and nausea (Vertigo).
Sleeping difficulties (Insomnia, sleep apnea).

Cerebellum: base of the skull

Loss of ability to coordinate fine movements.
Loss of ability to walk.
Inability to reach out and grab objects.
Tremors.
Dizziness (Vertigo).
Slurred Speech (Scanning Speech).
Inability to make rapid movements.

MIND OVER MENINGIOMA...

As a nearly 12-year meningioma brain tumor survivor, my motto and mantra has become "Mind Over Meningioma."

It is my goal to further increase meningioma awareness in 2012 via my 9-years-and-counting, nonprofit, Meningioma Mommas, www.meningiomamommas.org , our MAD ABOUT MENINGIOMAS Facebook Cause, http://www.causes.com/causes/242100-mad-about-meningiomasand through my writing, www.lizholzemer.com

I'm also hoping you'll help pass the mind over meningioma message. Feel free to chime in at any time to share your meningioma moments, milestones and musings.

Happy New Year!

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.

Meeting of the Minds...

"I've learned that every day you should reach out and touch someone. People love a warm hug, or just a friendly pat on the back."--Maya Angelou

Today I am grateful for:

*Connecting with inspiring meningioma survivors and their caregivers from the world over.

A Fresh Start...

I know the calendar says it's time to come off our post-holiday high of parties, presents and pounds and face the music in the name of New Year’s resolutions. Personally, I believe this annual, thinly disguised attempt to break bad habits and establish newer, healthier ones is doomed for failure.

We all strive to take better care of ourselves; be nicer, more tolerant people; vow to read New York Times bestseller books; take that trip we’ve been promising ourselves for years; but in reality, it never happens. So rather than share my previous resolutions I have yet to achieve, I resolve and propose we all take the time do perform the much simpler-easier-to-attain task of taking inventory of our lives on a daily basis. Giving thanks need not occur once a year in November.

After my first meningioma brain surgery I struggled with overwhelming feelings of depression often wondering how I would start life again. My childhood best friend suggested I keep a gratitude journal to focus on the "can dos" rather than the "can't dos" negative thinking I was consumed with. Initially I was skeptical about penning my thoughts on blank paper. I surprised myself when this regular act of taking just a few minutes or even longer on a regular basis created a shift in my thinking, not to mention the immensely huge difference it made in my healing and recovery.

To this day I still pull out that gratitude journal to remind myself that yes, I did make a fresh start and even if recording something as simple as "I walked around the cul-de-sac without any assistance" or "Sleeping through the night."

And so without any pressure (we all have enough daily demands in our life) I propose to share what I am thankful for over the course of 2011 and invite you to do the same. Ideally, it would be great to compile 365 days of gratitude, but hey I'm realistic that even the best intentions get sidetracked.

So here's to a fresh start beginning now.

I am thankful for:

*Ringing in the new year with board games, bad-for-you food & bed after the EST ball drop!

*Hannah & Hunter hugs

*Koufax is still managing well with diabetes and blindess and is determined to play ball every day!

*Snow--we finally got some!

*Home-made cinnamon rolls & chocolate truffles--the walking can wait!

Gradually Ascending the Mountain to Elevate Meningioma Awareness!!!

http://www.inspiremetoday.com/archiveDisp.php?type=0&ref=842

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."

Turning pennies into dollars...

It's not every day you can transform a lot of sense into donations. Thanks to GoodSearch, pennies will quickly add up to dollars--five thousand of them with just a few clicks and mere minutes of your time.

Starting today, April 6 until Thursday, April 9, GoodSearch will donate $1 up to $5,000 for every free toolbar that is downloaded.

Directions to Get Your Direct Toolbar Link (URL)

To generate your customized toolbar download page, please follow these steps:

1. Go to www.goodsearch.com
2. Enter Meningioma Mommas into the "Who do you GoodSearch for" box
3. Click on "Get the GoodSearch toolbar"
4. Copy the url from that page - that is your customized toolbar download page


By doing so, you'll be supporting a cause that is dear to my heart and mind, my nonprofit, Meningioma Mommas.

Remember, you must designate Meningioma Mommas as your selected charity for us to benefit.

Thank you in advance for your support of a nonprofit that has already helped thousands of patients, caregivers and family members soften the shock of their meningioma diagnosis.

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.

10x The Triumph

"Clean as a whistle."

That's all I needed to hear hugging Dr. Black. I've undergone numerous MRI's, but this one in particular had me especially on edge. The proof was before my eyes as Dr. Black scrolled past clear image after clear image on the computer.

Proof I still had nothing upstairs, well tumor speaking that is!

Meningioma-free.

Ten times the triumph.

Doggone It

Doggone it.

I'm reeling from another devastating diagnosis. Ten years ago it was my own--a meningioma brain tumor. Now it's my dog's. My firstborn. Koufax my crutch. The yellow lab who cheered me on and encouraged me during my brain surgery recoveries. He nudged me to get off the couch. Always reassuring me that I wouldn't be alone on this journey.

Three days ago I sat in the vet's waiting room doing that agonizing wait thing associated with all waiting rooms. Waiting for what? My world to collapse again.

The gut just knows when something's not right. Been there, done that too many times. With myself, my kids, now Koufax.

The long face.

Weight loss.

Insatiable thirst. In winter?

Such a sudden onset too.

I lost track of how many times I swallowed my heart. Eyes welling up over and over again preparing myself for the worst case scenario.


One word.

Diabetes.

Followed by another language I'm quickly crash coursing-- blood glucose curves, insulin, ketones....

What was that?

Needles?

Twice a day?

It's manageable.

So many questions. The answers are carefully explained, but I can't retain what I know I need to know. To remember.

How does a healthy eating and active dog get diabetes?

More common than you'd think.

For Koufax, simply a case of bad luck. That's the thing with Koufax and me, it's always been that way.

Meningioma.
Epilepsy.
Lipomas.
Thyroid.
Diabetes.

We'll stop now, thank you very much.

Now it's my turn to be Koufax's crutch.

Ten Times the Trouble...

Yes, it's that time of year again. Not the dead of winter during Colorado's known coldest month. Nor making only-to-be-broken resolutions. I stopped making those years ago. It's that time of year when I brace myself for the inevitable and pricey date with one very intimidating body of steel and magnets. An MRI.

People still ask if I get nervous even this far out from my ex-roommate's eviction and the answer is always yes. And perhaps even more so this time because when I take the strapped down plunge next Wednesday, I'll find out if I can proclaim I've been meningioma-free for 10 years.

Until then, this tenth MRI is ten times the trouble and...

Anxiety.
Angst.
Biting nails.
Butterflies.
Cold sweats.
Distress.
Dread.
Edginess.
Fidgeting.
Fright.
Goose bumps.
Hebbie-jeebies.
Ill at ease.
Jitters.
Killing time.
Kleenex.
Letting air out.
Misery.
Nail-biting.
Obsessing.
On pins and needles.
Panic.
Quivering.
Restlessness.
Strain.
Stress.
Suffering.
Suspense.
Tense.
Torture.
Trepidation.
Unease.
Upset.
Ventilating.
Vexing.
Waiting.
Worried stiff.
X-ray--clear?!
Yes or no in my head wondering about the results.
Zapped energy all the while waiting.