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 not related."

"You're just tired."
"You're over-reacting."
"You're hormonal."
"You're stressed."

Yes IT is and NO we're NOT!


 Enough already.

Meningioma Monday...

Supports Meningioma Specific Research

Still in time for May's Brain Tumor Awareness Month, Curveball:When Life Throws You a Brain Tumor is now available as an ebook on Kindle and the Nook! 


This is another way to donate even more funding to meningioma research while reaching those of you all around the globe.


http://www.amazon.com/dp/B0084K0FBM


http://www.barnesandnoble.com/w/curveball-liz-holzemer/1008218577?ean=2940014445788

Meningioma Monday...

"No person was ever honored for what he received, but for what he gave."--Calvin Coolidge 

Thank you to meningioma survivor, Tanya Stearns and Gene Wayland at a Cut Above Graphics for selecting Meningioma Mommas to receive 10% of all proceeds from the sale of beautifully designed Meningioma Survivor t-shirts and stickers. For all the information and how to order, go to:


https://www.facebook.com/#!/pages/A-Cut-Above-Graphics/230482353654084

Meningioma Monday...

Meningioma Monday...

"Creativity is contagious. Pass it on.” — Albert Einstein

I admire creative people especially those with an artistic bent. Being one who works with words, it was only natural to wonder if I would lose the ability to write after my meningioma surgeries. Thankfully, time and lots of healing proved my doubts and fears wrong.

Despite my meningioma, I'm still able to pursue my craft. Along my meningioma journey I've been fortunate to cross paths with other meningioma survivors who are still able to pursue their creative passions.

Today's Meningioma Monday "Creative Cranium" shout out goes to Jinx Garza, a meningioma survivor who is an amazing glass bead artist. You can own an original Jinx piece, which will also support meningioma research during Brain Tumor Awareness Month.

Check her craft out at:

http://www.ebay.com/sch/?_from=R40&_trksid=p3907.m570.l1313&_nkw=jinx+garza&_sacat=See-All-Categories


Jinx also blogs about her meningioma journey at:

http://www.jinxgarza.com/about

Meningioma Monday...

Meningioma on My Mind Revisited...


It's been four years since the following guest commentary ran in the Denver Post.


http://www.lizholzemer.com/upload/A%20tumor%20on%20my%20mind.pdf


What's changed? 


Thankfully, Brain Tumor Awareness is celebrated for the entire month of May instead of just a week. 


I personally believe there is greater awareness for brain tumors, but they still remain understudied and underfunded.


Unfortunately, what continues to remain unchanged is a cure for the more than 120-plus brain tumors. 


How do you plan to celebrate Brain Tumor Awareness Month?


As always, thanks for sharing.

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...

Cooking for a Cure!

Woo hoo, the Meningioma Match is back!!!

With National Brain Tumor Awareness Month kicking off May 1, Meningioma Mommas has a wonderful opportunity to further expand our meningioma research reach.

I'm currently in discussions with Dr. John Y. K. Lee who is an Assistant Professor of the Department of Neurological Surgery at the University of Pennsylvania School of Medicine and the Medical Director for Penn Gamma Knife at Pennsylvania Hospital.

Dr. Lee's years of research has resulted in refining an algorithm that could have the ability to predict higher grade meningiomas earlier and eventually lead to extending a patient's survival by giving doctors the opportunity to intervene when the tumors are smaller. This would also lead to significantly reducing wait-and-watch time or potentially eliminating it all together.

Needless to say, this is beyond exciting and the fact that Meningioma Mommas could be instrumental in funding this research is just as thrilling. Dr. Lee’s enthusiasm and passion for meningiomas is contagious. Not only is he brilliant, he has youth on his side to benefit us for a very long time.

Just a small catch--we need $$$ to kick-start this project. Fortunately, our Cookbook Meningioma Match is back. With meningiomas making the National and International news this week, one of our very own has offered to match dollar for dollar every time a Feeding the Mind Soul Cookbook is sold. We need to raise $5,000-$10,000 for seed money.  I'm convinced this is DOABLE. Let’s move these once and for all while making a statement to Dr. Lee Young during National Brain Tumor Awareness Month!

Finally, not to twist any one's arm or anything, but for those savvy social media types out there (yes, YOU!), please feel share to pass along. Let's join together to combat this misunderstand, easily dismissed, and poorly understood tumor that affects us all.

Only $15 each or 2 for $25, which includes PRIORITY SHIPPING and excellent customer service.

Order 2 ways:

Pay Pal:

Scroll to the bottom of the link to enter order

http://www.meningiomamommas.org/mommas-merchandise


Snail mail:

Meningioma Mommas
9249 S. Broadway Blvd.
Unit 200-PMB#240
Highlands Ranch, CO 80129

Meningioma Monday...

Words to inspire and live your life as you desire.

My meningioma journey has enabled me to embrace Sir Cecil's risk taking mantra. If I can overcome the fear of having a meningioma, I can face anything. 

"Be daring, be different, be impractical, be anything that will assert integrity of purpose and imaginative vision against the play-it-safers, the creatures of the commonplace, the slaves of the ordinary."--Sir Cecil Beaton

What risks and new endeavors have you taken since your brain tumor diagnosis?

Meningioma Monday...

No Foolin'! Hunter's early arrival on April Fools Day eight years ago is a medical marvel I am beyond blessed to celebrate.


Happy Birthday Triple-H!

Meningioma Monday...

"Creativity is contagious. Pass it on.” — Albert Einstein

I admire creative people especially those with an artistic bent. Being one who works with words, it was only natural to wonder if I would lose the ability to write after my meningioma surgeries. Thankfully, time and lots of healing proved my doubts and fears wrong.

Despite my meningioma, I'm still able to pursue my craft. Along my meningioma journey I've been fortunate to cross paths with other meningioma survivors who are still able to pursue their creative passions.

Today's Meningioma Monday "Creative Cranium" shout out goes to Barbara Conway, a meningioma survivor who is an oil painting genius.

Check her out at:

http://barbaraconaway.com/ 


Barbara also blogs about her meningioma journey at:


http://barbaraconaway.blogspot.com/ 

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..

 I want to combat meningiomas with the same ferocity my daughter displays during competition.

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?

Meningioma Monday...

Meningioma Mommas is making its mark toward their goal of donating one million dollars to fund meningioma research.

They have renewed their funding with Johns Hopkins University with a new $12,000 donation bringing the total tally to $192,000.

Thank you for celebrating this major milestone with Meningioma Mommas!

We are still far from a meningioma cure. Together we can bridge that gap.

Help us close it with a donation today!

http://www.meningiomamommas.com/donations

Meningioma Monday...

"A well-developed sense of humor is the pole that adds balance to your steps as you walk the tightrope of life."--William Arthur Ward

It hasn't always been easy traversing this meningioma minefield of a journey, but I've found humor not only helpful, but extremely healing.
 
Humor has numerous benefits. It's been medically proven to:

*Reduce Pain.

*Decreases Stress.

*Strengthen Immune System.

Humor also has a positive impact on emotional and intellectual functioning:

• Helps put life’s trials and tribulations into healthy perspective by making them seem smaller.

• Aids us in overcoming fear.

• Allows us to take ourselves less seriously.

• Triggers our creativity.

• Burns calories!

Humor is great health care. I still can't figure out why Blue Cross and Kaiser don’t pay for it!

I now share with a few of my favorite ways to add humor to your life:

*Pretend you are a humor columnist and have to report several funny incidents daily.
*Rent funny movies.

*Buy/check out from library comedy books & tapes.

*View your life as a sitcom. Who would you cast as your family, your boss, your nosy neighbor, yourself?

*Sing your biggest problem set to your favorite song.

*Imagine Woody Allen is filming and starring in your life.

*Give hugs and smile at a stranger—it’s hard not to feel good when you’re doing something that makes you feel good too.

How do you get your daily dose of brain tumor humor?!

Meningioma Monday...

"Creativity is contagious. Pass it on.” — Albert Einstein

I admire creative people especially those with an artistic bent. Being one who works with words, it was only natural to wonder if I would lose the ability to write after my meningioma surgeries. Thankfully, time and lots of healing proved my doubts and fears wrong.

Despite my meningioma, I'm still able to pursue my craft. Along my meningioma journey I've been fortunate to cross paths with other meningioma survivors who are still able to pursue their creative passions.

Today's "Creative Cranium" shout out goes to Linda Roman, a meningioma survivor who is the creative genius behind Solcreations for you. Linda also pays her talent forward by supporting meningioma survivors and research.

Check her out at:
http://www.etsy.com/shop/solcreator

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.