Wednesday, January 28, 2009

Happy Birthday!

My brainchild, Meningioma Mommas is six today!

Hope. Friendship. Laughter.
Nearly 4,000 served and connected.
$145,000 of meningioma specific research funded.
Hugs. Tears. Fears.
Yes We Can.

Tuesday, January 27, 2009

Tube Thoughts...

You think I'd be used to this by now. After all, I've had more MRI's than I can count on two hands. I know for some it's easier with each passing year, but for me I think it's getting harder as I rack up the point of no return years. I can't help the fear that the longer I'm a meningioma survivor that one day my perfect record will shatter. I'm on a Cal Ripken Jr. streak if you will.

Enough of the doom and gloom!

Much earlier today, I underwent my nth date with the MRI tube. On the upside, the scans that used to take 45 minutes have significantly shaved off minutes--a bonus for the claustophobic. Call it the drive-thru MRI if you will. With that said, the sensations haven't changed or the newly added features I experienced for the first time today. Did someone say earthquake simulator?!

So in an INXS "Mediate" sort of way, my ruminations about my meningioma journey thus far from earlier today while in the tube and as I awaited my follow up report with everything crossed...

Various sensations.
Mixed emotions.

And then I received word from the oracle aka my brilliant neurosurgeon....

Actually his smile gave away the results before he uttered them.

"Perfectly clear." Then he flashed me two thumbs up.

My reaction aside from obvious relief?!

What a difference nine years makes.

Saturday, January 24, 2009

Oh No Not Again

Oh no, I'm not talking about already breaking a new year's resolution, but rather the looming doom I always feel during this time of year....the dreaded MRI.

Three days from now to be exact, I'll get strapped into that all too familiar hollow tube and get shot up with enough gadolinium to rival the Fourth of July. All in the name of ensuring my ex-roommate aka the baseball-sized meningioma brain tumor I had evicted nine years ago, isn't back and back with a vengeance.

Two years ago I had a scare—the suspected residual tumor or scar tissue—doctors still can't determine which it is—indicated change. Not enough for my neurosurgeons (never thought I'd say that in my life time, I have a team of neurosurgeons at my disposal.) to be concerned at the time. So I'm on WAW or Wait and Watch as us brain tumor survivors call it. On the upside of having a brain tumor, I’ve mastered an entirely new lingo.

Wait for what? For the ex-roommate to defiantly proclaim its presence? Watch it move its prized possessions back in and get accustomed to former cushy and comfortable surroundings? I certainly hope not, but it's not up to me to decide. I'm comforted by the fact that if my tumor ever decides to rally in cells and grows, I know what to expect. After all, I’ve read the Meningioma Master Plan Eviction otherwise known as my path report. I know how the doctors excavated my roommate.

Bipolar electrocautery was utilized as well as a large Leksell, Midas Rex, a 15 blade and for a lovely touch—a corkscrew to pop open my dura. The MMPE also states, “The CUSA (Cavitron Ultra-sonic Aspirator) was used to try to debulk the tumor but the tumor was so tough and fibrous that it would not adequately work. Using an attachment, a ring attachment on the Bovie, this was used to internally decompress the tumor.”

The first time I read those haunting words I had an image of the trademark mustard yellow Stanley Steemer cleaner vans delivering super powered vacuums to suck out my stubborn roommate.

And then…“At this point, utilizing the bipolar electrocautery, the biopsy forceps, several various-sized patties were taken of tumor.”

I couldn’t help but think of McDonald’s.

“Meningioma Melt and super-size the fries please.” I always knew there was a reason for my aversion to the Golden Arches.

“This tumor was hard, fibrous,” the MMPE made particular mention of a second time. Well, what did they expect—it had been adhered to my brain for the last 10 years. Why would it want to leave all the comforts of home—free room and board and a plentiful food source?

I further learned that I had narrowly escaped having a blood transfusion, and my bone flap was secured in place with three bone buttons. While that explained the three indentations I could feel in my head, similar to a bowling ball, it also raised more questions. Whose bone was now residing in my head—I certainly wasn’t missing any of mine that I was aware of—and what if a button gradually unthreaded itself? I’m not much of a seamstress, but I don’t like the thought of loose bone buttons floating around in a pool of cerebrospinal fluid.

Bottom line—I'm a brain surgery veteran with 15 hours of grueling and delicate surgery under my thin-skinned skull. I have the upside down question mark scar to prove it.

Oh no not again is right and hopefully next Tuesday will yield two pieces of great news--my ex is obeying its restraining orders and I'll breathe easier.

Tuesday, January 20, 2009

For You Dad

I know too many people whose parents have passed away. I’m lucky to still have mine. In honor of my father who turned 78-years-old this week, what I love most about you...

1. You’re the smartest man I know.
2. I could always come home after college and did!
3. I love being your “daddy’s little girl.”
4. You’ve always supported my decisions even if you didn’t always agree with them.
5. You taught me how to ride my first bike—the cobalt blue one with the speckled banana seat.
6. When I had the chicken pox in 2nd grade you bought me a music box that played “Love Song.”
7. You shared the beauty of the ocean with me early on in my life.
8. You’re a great story teller.
9. I never got tired of hearing the tale about the “One-eyed Cyclops” at dinner time.
10. You taught me to appreciate culture even though I hated PBS as a child.
11. You helped me buy my first car after I signed your 13-page payment agreement with my brothers as witnesses.
12. You tell great dirty limericks and jokes.
13. You got me to eventually enjoy milk.
14. The great vacations to La Jolla and Big Bear.
15. Instilling the value of a college education from an early age.
16. You and mom giving me three younger brothers.
17. You love to take walks.
18. We can both say we are UC Irvine graduates.
19. You let me drink coffee-milk on Sundays.
20. You have patents.
21. You remained patient when I struggled to solve algebra and geometry problems—not an easy thing to do since you’re a mathematician.
22. Your New York accent.
23. How excited you get when the Oakland Raiders score a touch down even if they didn’t much do that this season.
24. How you called Elliot, Josh, Jonathan and me kiddley beans when we were kids.
25. Taking us on picnics at Aldrich Park.
26. The cup of always freshly sharpened pencils on your desk.
27. I learned to drive in your avocado green Pontiac.
28. You gave me the “rings” from the cigars you used to smoke.
29. Treating me and my best friend to the Bouzy Rouge Café for my 16th birthday.
30. When you gave me my first cat, Natasha, for my 8th grade graduation present.
31. How you tolerated my wearing-all-black-to-go-dancing phase in high school.
32. You save everything like I do.
33. We both like Heineken beer.
34. You always helped me write and proofread my English papers.
35. You didn’t get too upset when I double-pierced my ears in 9th grade.
36. You made it possible for me to attend college(s).
37. You fostered my interest in photography.
38. Your great bear hugs.
39. You’re sentimental.
40. You have the most extensive book collection of anyone I know.
41. You’re patient.
42. You cross your z’s and 7’s like me.
43. You’re right and left-brained.
44. You love Woody Allen films and I do too because of you.
45. I’m always proud to say “My dad attended M.I.T.”
46. You never told me how you really felt about my boyfriends until after we’d broken up.
47. Your handwriting is easier to read than mom’s.
48. You let me try Cognac when I was a toddler and I haven’t tried it since.
49. You always say “I love you” before hanging up the phone.
50. You and mom still live in the same house I grew up in.
51. Our summers spent at Shaw’s Cove.
52. You and mom getting silly on New Year’s Eve after one glass of champagne.
53. Not complaining about the huge mess my brothers and I created in the kitchen after making you breakfast in bed on special occasions.
54. You always count the number of candles on our birthday cakes to make sure they’re accurate before we make a wish.
55. My first outing to Disneyland was with you.
56. The sound of your deep voice when you sing the Sabbath blessings.
57. Taking us to Baskin-Robbins for ice cream cones.
58. Not getting too mad at grandma when she gave us chocolate buttons and candy cigarettes from Zucky’s deli.
59. You let me celebrate my birthday for three days when I was growing up!
60. The fun we had playing Careers.
61. When you used to carry me fireman-style.
62. Swinging with you in our backyard hammock.
63. Letting us play in your’ 56 Chevy in the carport.
64. Memories of you reading Twas the Night before Christmas as we gathered around the fireplace on Christmas Eve.
65. How your eyes light up when you smile.
66. You took me to my first drive in—Pinocchio in your Chevy.
67. Your eclectic tie collection, which you still have.
68. Our friendly Labyrinth competitions.
69. Sharing cream cheese and olive sandwiches and pink lemonade with you at the beach.
70. Your contagious laugh.
71. Your threadbare green and white terry cloth robe.
72. When you share the story about how you and mom met at a graduate school mixer.
73. You separate the Sunday paper into each section before you read it and so do I.
74. You and mom are still married.
75. Your sister is a great aunt.
76. You're incredibly healthy eater.
77.Your amazing memory.
78. That you’re my dad.

Friday, January 16, 2009

Blonde & Brain Impaired

Just some brain tumor schumor for the weekend...

To all those women feeling blessed, er, or rather cursed at times with being a true blonde, I can relate. I entered the world as a towhead, but not even sun and saline summers I spent year after year along the Pacific coast could preserve what Mother Nature had bestowed upon me. At nearly 42, (ok, only 41!) it’s actually sandy blonde and I have to pay what freelancing income (rather pittance) I don’t have, to achieve the gorgeous caramel and honey hues my 7-year-old daughter was naturally blessed with.

Lest I digress, I’ve had my fair share of “Dumb Blonde Jokes” sent to me. You all know the ones I’m referring to like “How can you tell if a blonde's been using the computer? There's white-out on the screen.” Or “Why do blondes take the pill?So they know what day of the week it is.”

And if being blonde wasn’t bad enough, nine years ago I discovered I had a brain tumor—a baseball-size tumor known as a meningioma, which shockingly had occupied my cranium for well over a decade.

So large was my uninvited guest that, like a schoolyard bully, it had actually shoved and pushed the right side of my spongy brain into its hemispheric left-sided counterpart. I’m convinced--or at least I tried selling this argument to my parents for years--this is why I wasn’t granted admittance into Columbia, Northwestern, CAL, (it’s too painful to name the rest), prestigious journalism programs.

Within days I was scheduled for surgery to remove the roommate that had invaded my brain and my life. I was told at the time that had my neurosurgeon not already been booked (I thought you only booked airline tickets and fancy dinner reservations), my half day surgery would have taken place within 24 hours.

It’s a miracle I survived considering how life threatening my blood thirsty tumor was and the fact that it was so tough and fibrous (as noted in my play by play path report) that in order to extract it, it was thinly sliced like deli meat.

Not long after my surgery I became more aware of how people reacted when I proclaimed I was a brain tumor survivor. Inevitably, the common reaction was, “You look too good to have had brain surgery.” Translation—why didn’t I resemble Herman Munster? OR people nearly gave themselves whiplash wondering how and where my tumor was removed. It didn’t take long before I offered an automated response, “Yes, the entire new line of Home Depot Dual Bevel Slide Miter Saws and DeWalt 18 volt compact drill drivers were demoed on my head!”

In fact, it’s become one of my many favorite mantras, which I don’t hesitate to share—the world needs to know that you can survive major surgery--including brain surgery. If you can’t talk about it and laugh at yourself, then this scary life altering subject will only continue to be shrouded in secrecy. And I’ve noticed that when I talk openly about not only being blonde but a brain tumor survivor as well, people lose the nervous laughter. They usually move in closer, cautiously inch by inch, curious about the bowling ball grip (courtesy of neurosurgeon drilling and tumor excavation) I point out beneath my highlighted hairline.

The best part about being a brain tumor survivor is being alive and reinventing myself. So without further adieu and in hopes of catching David Letterman’s attention, I present…

Top Ten Brain Tumor Survivor Benefits

10. Botox injections are painless if your face is numb like mine. I actually look forward to them, well that's if I did Botox.
9. My brain was occupied by a roommate, which explains why I wasn't accepted into an Ivy League school.
8. It's a great conversation starter: “I survived a brain tumor.”
7. It makes for really cool show and tell. I have an upside-down scar that resembles a question mark along my right ear.
6. I have a legitimate excuse for misplacing my keys, putting milk in the pantry and forgetting where I parked my car.
5. I’ll be on drugs for the rest of my life and am privileged to carry a dog-eared Walgreens frequent RX punch card.
4. I’m on a first name basis with the MRI techs at every hospital in my vicinity.
3. I love to gauge strangers’ reactions when I tell them, “I’m blonde; I don’t have a brain.”
2. I get my kicks when my titanium screws set off airport security alarms.
1. I’m waiting to get pulled over for speeding so I can say, “But officer, I’m blonde AND brain impaired!”

Wednesday, January 14, 2009

Welcome to Wacky Wednesday!


I’ve had it. I’m done. I wish I could quit you all, but the sad reality is I can’t. I’m only 41. Aren’t I still considered too young for all of this?

It all started my senior year of high school when I acquired the first of the ologists. My gynecologist— my mother’s to be exact. Dr. Feldman. I didn’t think it proper to have a man touch me in places no other man had before. I found my own—a female— when I left for college.

I was safe for a long time and could deal with the cold stirrups on an annual basis. I pretty much was ologist-free in my 20’s. The trouble all began as soon as I hit my 30’s or what I refer to as my mid-life crisis years. Thankfully, I finished with them a few August's ago.

After a routine visit with my gynecologist, she noticed blood in my urine and referred me to an urologist. What was he going to feel when I coughed? A misdirected urine stream? I endured tests and was told nothing was wrong.

Nothing wrong that is until my years of Southern California sun worshipping urged me to seek an ologist on my own—a dermatologist. My body checked out fine except in places where the sun had never set its eyes. Two office visits later, my ass resembled Swiss cheese. I only shudder to think how the rest of me will look as time marches on.

Not many months after the Swiss cheese episode, I discovered a lump in my breast during an early morning shower. Back to the gynecologist I went. Days later I saw a radiologist. A week later, my breast tumor was removed. Back to the gynecologist for a post-surgery follow up. I think you get the drift of how I spent my early 30’s

Hold on, I’m not done yet.

Nine years ago, I began having seizures, migraine headaches, infertility issues. I just wanted to become a mother and I went from one puzzled doctor to another. I had an MRI. A radiologist read my scans and less than 12 hours later, I was assigned a neurosurgeon. I had a baseball-size meningioma brain tumor, which required immediate surgery.

I survived the surgery, but my drilled-into psyche didn’t. I added a fifth doctor, a neuropsychologist, to help me cope. He didn’t offer ologist coping strategies though, which in retrospect, would have been helpful.

I healed and life went on. I bore the daughter I was told I couldn’t have. Her arrival brought great joy, but not in terms of the seizures I started having again.

I added neurologist to my growing list of ologist docs. This one gives me drugs and they don’t come cheap.

Five years ago, miracle child number two came along and with that, a knock-me-down fatigue I’d never experienced before. Back to the gynecologist who makes referral to expert endocrinologist. I donate vials of blood and am diagnosed with funny sounding disease—Hashimoto’s—to be exact. My thyroid is slower than a turtle’s pace. More drugs, but these come much cheaper.

And even though I do have hemmorhoids—a lovely souvenir two pregnancies gave me—I don’t think I’m quite ready to go down the proctologist path.

I am now on a first name basis with my pharmacologist. My yearly planner is pre-booked with annual visits to gynecologist, dermatologist, radiologist, neurologist, and endocrinologist.

Luckily, I was able to break up with the neuropsychologist without any hard feelings.

Sunday, January 11, 2009

Mind Over Meningioma

This entry is in response to KiwiGirl's query about any healthful changes I've implented in my life since meningioma excavation as I like to refer to it. Naturally one would think I'd jump right back to my normal routine after brain surgery. Of course that's easier said than done.

Ironically I was in the best shape of my life prior to my tumor finally being discovered. I worked out, ate relatively healthy, got enough sleep...And who would have predicted that three months into my recovery I'd spring a CSF(cerebrospinal fluid) leak and require emergency brain surgery? Then there's my pregnancy (despite being told I couldn't conceive naturally) another five months later. Baby #2 followed by hypothyrodism diagnosis and what little energy I did have, I reserved for naps and napping. I think you know where I'm going with this.

My husband, a retired althete, reminded me how energized I felt after we used to work out together. But hun, I'd plead, how can I work out when I don't have the energy to in the first place?!

Not even turning 40 motivated me to step back into a gym. I guess you could say I was still haunted by the memories of walking the treadmill and lifting weights while unbeknownst to me, I was harboring a massive meningioma brain tumor. Yes, I could justify I was getting plenty of exercise chasing after two kids.

So what did it finally take?

The day before my 41st birthday I took a personal inventory of my physical health. I was tired of being tired--one of the permanent residual deficits from brain surgery as well as the medications I'll remain on for the rest of my life. The anti-seizure medication I take daily also compromises bone health so wasn't that a compelling enough reason on its own? Hello, osteoporosis. I was eight years out, what was my excuse?

Excuse no more.

The morning of my birthday I took a walk. Was I winded! I took another, followed by another... I'm proud to say that while I've never been one of those daily exercise junkies, I've stuck to a plan of improving my health for five months now. But's not just about breaking a sweat and firming up my floppy muffin top. What's worked best for me is the following simple plan:

Anyone can find 30 minutes in his or her day. Think about how much time you can spend mindlessly surfing the internet. Those minutes quickly add up! Pen it in like you do your TO DO LIST. Grocery shopping, pay bills, fire up your heart...

I've never been one to diet and am thankful for great genes, but I know that I can't eat my favorite food group--cheese--six meals a day! Instead, what I've done is swap out chips for almonds or walnuts. What a boost in the afternoon when that proverbial slump hits. I also don't believe in restricting favorite foods. In fact, two of my eating goals for 2009 are to eat dark chocolate every day and enjoy a glass of red wine (which for some uncanny reason is the only elixir that eases the daily facial pain I live with. More on that in another post!) with dinner. So far, so good.

The most important change I've implemented since kicking-meningioma-to-the curb is simple even though it took me years to accept and fully embrace:

I've learned to tune into my body and accept my newly defined limits as frustrating (not feeling up to walking my kids to the park, which is heartbreaking) as it is.

Those who know and understand me accept that when I make plans for any future date they are always followed by the caveat of SUBJECT TO BEING CANCELLED. And many a last minute cancellations I've made.

I nap nearly every day and research has proven that even a 12 minute nap can reset your sagging productivity levels.

Speaking of sleep, I require at least 8-9 hours to function the next day. And timing matters for some inexplicible reason. For example, nine hours from 10:30 p.m. to 7:30 p.m. is more restorative than say sleep from midnight to 9 a.m. Just another one of those post-surgery quirks I guess! I used to have the stamina to pull all nighters, but it is no longer to be. Thankfully I finished college before I was even aware of my unwelcome upstairs roommate.

Finally, what works better than any ellipitical session or decadent chocolate is unplugging my mind. Losing myself in a foreign film, visiting my favorite beach during a visit home, hiking a new trail...all on my own.

Mind over Meningioma.

Thank you for this thought provoking quest for healing. Would love to hear what works for you!

Saturday, January 10, 2009

Meningioma on My Mind...

No this isn’t a Willie Nelson reprisal of “Always on My Mind” but it could be. Rather it’s an ode to an issue that is very dear to my heart and literally on my mind every day.

Nine years ago, I was on a mission to find out why I couldn’t become pregnant and have the children I so desperately wanted. Instead, at age 32 I was diagnosed with a baseball-size brain tumor called a meningioma and underwent life saving surgery eight days later.
Meningiomas are the most prevalent primary brain tumor and of those diagnosed, 65% are women.

Many misconceptions surround meningiomas, one of them being that they are harmless because 90 percent are classified as benign. In reality, they are often far from it, even deadly. Benign tumors can cause permanent disabilities and be life-threatening. Meningiomas have a 15 to 20 percent reoccurrence rate so survivors must be monitored for the rest of their lives and live with the fear that they may come back.

Preliminary research has indicated that meningiomas could be hormonally fuelled. I was constantly told it was all in my head, I’m female, hormonal, stressed out— the modern woman’s plague! They are also slow growing so as a result of all these factors many meningiomas are misdiagnosed, especially as some of the symptoms can be attributed to menopause, or are not detected until they start causing serious deficits or even kill.

When I was diagnosed I felt alone, isolated and frightened. I knew of no one who had survived a brain tumor let alone a meningioma. Those feelings were aggravated by the fact that they are often discounted by those in the medical profession and I was told I had the “good” brain tumor. Who knew I was this lucky. As far as I’m concerned, there is nothing good about any growth in your head!
I longed to connect with others who would understand how I felt. Rather than lament the fact there was no real support out there for meningioma sufferers and wanting to prevent others from feeling the same helplessness and fear I had, I created my own non-profit organization called Meningioma Mommas. We are a 24/7 online support group for all those affected by meningiomas. Today we have over 3,800 members worldwide with a handful of new members joining every day.

Providing a safe haven for people suffering from this devastating disease isn’t enough for me. I am deeply committed to raising money for meningioma specific research and hope to raise one million dollars in my lifetime. We’ve already raised $145,000 towards my goal.

My ultimate goal is to put meningioma on the awareness map and to eradicate this disease head on.

And Willie if you’re interested, “Meningioma on My Mind” does have a nice ring to it.

Thursday, January 8, 2009

The World is Less Wonderful Now

I dedicate this post to my friend, David Welch.

Even though we only met a few years ago at a brain tumor conference and spent a brief amount of time together, you left your indelible mark on me. I always looked forward to November when we would meet up again and share another laugh.

I already miss your contagious smile, strong hugs, sharing a seat with you, inspirational words, your daily writings...

There is so much to say, but I am not in the same league as you my articulate friend. I know you are entertaining the angels with your music.

The world is a less wonderful without you, but it is richer because of your gifts. I will continue the fight in your honor.

"Confront reality. Confront end."--David Welch, August 3, 1966-January 7, 2009

Now that I've Taken the Plunge!

Welcome aboard if you're reading this and thank you for stopping by.
Feedback is always a great thing for us creative types who mostly work in isolation. I have to admit it works to my advantage most of the time that both of my kids (who I do adore by the way!) attend school full-time, I have a workaholic husband and a very patient and understanding dog. When I hit that proverbial writer's block wall, a bit of ball time with my beloved Lab, Koufax, tends to do the trick.
I have many ideas about what I want this blog to be and pardon me in advance for I will ramble at times like misfiring neurons. So a few things about me to get started.

I am passionate about my family, friends, the beach, travel, photography...

I was raised near the ocean, but have called Colorado my home for nearly 16 years.

I'll often write about a funny sounding and difficult to spell and pronounce brain tumor called a meningioma here.

I survived a baseball-sized one 8 years ago.

I am on a mission to reach every person diagnosed with a meningioma and raise much needed and overlooked awareness and research for this disease. I founded my non-profit, Meningioma Mommas six years ago to provide support and to achieve these awareness and funding needs. I'm $145,000 of the way towards my $1 million dollar goal. Thankfully, I've had a tremendous amount of help and big shoulders to lean on along this ongoing journey.

On the lighter side, a few quirky things about me...

*I'm a stomach sleeper.
*I love eating ice cream when it's freezing outside.
*I nearly faint during blood draws, but somehow managed giving birth twice and having two brain surgeries.
*I prefer the smell of coffee over its taste.
What are your quirks?!

Wednesday, January 7, 2009

Off & Running!

So here I am finally hopping aboard the blog-bandwagon! Bear with me as I slowly master this new learning curve. Also, keep in mind I'm a virgin blogger. One, two, three, time to get my feet wet. JUMP!