Thursday, May 13, 2010

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."

Monday, April 5, 2010

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.

Friday, March 12, 2010

Sometimes you just need a photo...






or several to best express what you're trying to articulate.

Brother and sister reunited. Lab lovers and dog owners alike will understand by the expressions in their soulful brown eyes and happily panting faces right down to their nearly identical matching black birthmarks on their tongues.

Meet Koufax and Doc, a brother-sister reunion at its best.

Monday, March 1, 2010

Canine Connections


I love the first day of a new month because it's a chance to start over and set new goals for the next 30 or 31 days. It's also a reminder to slow down, reassess and ponder this existence called life. Like Forrest Gump once professed, some days you just don't know what you're going to get.

Today was one of those such days.

The encouragement of a friend led me to enter a canine contest describing my dog's inner self in 100 words or less with an accompanying photo for a chance to win a photo session. Hey what did I have to lose? After all, I've penned many a thought about my 10 1/2 year old yellow lab, Koufax. I've been taking more photos of him than unusal ever since his diabetes diagnosis six weeks ago to capture, well the obvious.

So entered away I did.

Jaime, the contest sponsor followed up with an email noting how she was a lab mom as well and the uncanny resemblance of her dog to Koufax. Of course, hers was also 10 1/2 and wow, wouldn't that be weird of her Doc and my Koufax were from the same breeder.

Nah. What would be the chances?

Well that led to a flurry of emails inquiring about the exact location of breeder, Doc and Koufax's birthdates, shared health ailments...

I sensed a huge discovery just moments away from being revealed. I was giddy with excitement over the prospect that Koufax had a long lost sister he could reunite with.

We both unearthed the pedigree paper trail we'd held on to all these years.

The flurry of back and forth emails continued.

Would you believe, they both in fact had the same breeder.

Mismatched mother's names though.

Jaime emailed back, "So close."

Wait. Hold on.

Sire.

Rascal.

A playing-the-field-busy rascal indeed.

BINGO!

We have a half-sibling match.

And a ten and a half year reunion in the making already planned.

Thursday, February 11, 2010

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.

video

Wednesday, January 27, 2010

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.

Monday, January 18, 2010

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.

Thursday, January 14, 2010

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.