BRAIN SURGERY - AWAKE!

If you have been watching the news recently, you've probably heard that U.S. Senator, John McCain has been diagnosed with brain cancer.  He has a brain tumor called a Glioblastoma, which is the most aggressive type of brain tumor. It originates in the brain; it does not spread there from another part of the body. The cause is not known.

If you've read my blog previously or know me personally, you know that I am a brain tumor survivor. When I hear of a diagnosis like that of Senator McCain, it takes me back and reminds me of how blessed I am. Don't get me wrong, I am grateful every day for my health and my life but when you hear news like this, that can be rather devastating, it just makes you extra grateful. 

I am aware of just how lucky I was to have the outcome I did regarding my brain tumor, and for that I am forever grateful! I am especially grateful for the doctors who treated me and specifically, my neurosurgeon, Dr. Ricardo Komotar!

"Dr. Komotar is an internationally recognized leader in the field of brain tumors and performs nearly 700 procedures for these conditions each year using advanced cutting-edge surgical/radio-surgical techniques, making him one of the highest volume brain tumor surgeons in the world."  

Honestly, Dr. Komotar is not only a brilliant neurosurgeon, he genuinely cares about his patients and is passionate about what he is doing. I knew from the moment I met him that he was the guy for the job! He absolutely knows what he is talking about and is an expert in his field. There is an instant connection and good vibe when you meet him and you know right away, you are in good hands.  Hopefully, you will never have to go through any of this but in my experience, I could not have asked to be in better hands, or at least my brain anyway! LOL!

Below is a video of some amazing technology, where Dr. Komotar and his colleagues perform an awake craniotomy on a man diagnosed with a glioma. That is a general term used to describe any tumor that arises from the supportive (“gluey”) tissue of the brain. This tissue, called “glia,” helps to keep the neurons in place and functioning well.

(WARNING: If you have get queasy easily, do not watch video)

 Emmy-Nominated video on extracting a deadly brain tumor.

No matter what you have gone through in your life or are going through, remember to always have an attitude of gratitude!

Sources:

YouTube

UHealth Systems

CAN CELL PHONE USE CAUSE CANCER?

Be aware of the possible harmful effects of cell phone usage. 

I am a middle-aged mom who was diagnosed 2 year ago with a brain tumor.  They do not know what caused it or how long it had been growing, only that it was the size of a lemon and was causing massive swelling in my brain. The doctors did not know how I had been walking around with this lemon-sized tumor for so long.  I may never know what actually caused, but I can share some tips with you and this video is one of them. 

If you can do something to avoid unnecessary exposure, do it!  Especially with your kids!  Personally, I have to get my kid an earpiece, although, with teens it's all about texting.  We won't know the true harmful effects of cell phone usage until years from now.  Just be aware.

LIFE AFTER A BRAIN TUMOR

Let me start out by saying what I always say, "that I am forever GRATEFUL!"  I repeat, I am eternally gratefully that I survived a brain tumor. That is no easy task.  As many of my readers know, I was diagnosed with a brain tumor (*meningioma) in November 2013.  I was fortunate to have been blessed with a benign diagnosis.  Nonetheless, life changed.  Not many people can see it because, my scar healed and my hair grew back, but it is the little things, one must live with that change you.

Everyone expects you to go on as life was before, but that becomes difficult when little by little you realize, you do not remember things so well anymore.  It is not the normal "oh I forgot where I put my keys this morning."  It is the "Oh, I forgot to pick up my child at the bus stop today" kind of things, or not remembering if I showered or ate or having to ask for help to spell the most basic words, because my brain cannot momentarily remember.  I can only explain it in Spanish right now because you see, I can't come up with the phrase in English. The way I feel is "No cuadro los pensamientos."  Sorry - go to Google Translate -   I mean, yeah, sure, I can think and write, but my "agile" mind has slowed down a few notches and that sucks when you are still relatively "young!"

What really bothers me is not having the confidence to take on new tasks for fear of not remembering something or not be equipped to do my best.  It is having to stop and realize I have been in a "staring trance" for minutes because now my brain does that constantly.

Sure, these are things that aren't really a big deal.  Everyone forgets things, but when you are accustomed to "sharp" thinking and being accurate about things all the time, it is hard to live with doubt.

Recently, I went on a 2nd job interview and forgot that I had already met one of the people there and re-introduced myself. Sounds silly, I know but it made me feel really stupid afterwards when the person said, "oh we've met."  Talk about a "Dory moment" from Finding Nemo! 

The only real comfort is knowing I am NOT alone!  Those of us out there who have had brain tumors removed, are forever grateful at surviving.  The outcome could have been much worse. Some people are worse off than others, some people go on with their lives and they are fine.  Some of us have real shitty days. (Sorry, I curse now more than ever...no filter.)

It is annoying to wake up on a perfectly sunny day with a big headache and a "mask" feeling over your face, knowing full well it will rain that day.   It sucks that my kids tell me things, and I don't remember sometimes having had a particular conversation with them, when before I definitely would have!  Like most moms, I want to participate in my children's school activities, but there are so many days I wake up feeling like a "mack truck" is literally on my face and head, that it just becomes depressing and I become a recluse.

It frustrates me to have more headaches than BEFORE my "M" but I keep trying to remind myself of how badly it could have gone. It is no fun to feel worse than before when everyone EXPECTS you to be "better."  On the outside "you look fine," they say.

Intellectually, I know what I have to do to get myself up and going, it's just the moments where I say, "Damn, I didn't feel this bad before my surgery. Why do I feel like this now?"

Luckily, I have learned and have become wiser with the challenges I have faced. This is where I am now and I will conquer the "bad days," especially for my children.

 I CAN DO IT! (as Louise Hay says.)  Sure, I will keep bitching and complaining, being a being a crabby bitch is part of my charm but in the whole scope of things, I see myself as very LUCKY!

No one wants a brain tumor, but I am lucky to have survived. We, (all of us who have survived) must find a way to fight the pain, go to the doctor and insist on help and try to live a more holistic life.

We have to adjust to the fact that our lives have a new reality.

We are all here for a reason and we are all MOMMY WARRIORS!  There is a group on one of the social networks that I am a part of, Meningioma Mommas that has been a life-saver and a sanity saver, for me. It helps  in knowing that I can vent and get advice from others on this topic.

If you are living with a brain tumor or struggling with the "after-life" of one, I wish you well!  You are not alone, there is life after a brain tumor, it is just a new reality!



* Ref.  
What is a Meningioma?

Benign

MY THROWBACK THURSDAY POST - BRAIN TUMOR SURVIVOR

February 27, 2014 at 11:19pm

So, it has been two months since my craniotomy, and I can honestly say I have come a long way both physically and emotionally!  As I celebrate my birthday TODAY, I am eternally gratefully to G-d, the Universe, whoever is in charge!  Even though I am not currently working, I am happy to have the time and health to have taken up my "mom duties" again!  Somehow, I had lapsed in this department.  Not only was I working full-time, an hour away, somehow, I had grown apathetic and aloof.  I don't know if I can blame it on my brain tumor but having survived one, I can definitely say, changed my life's perspective.

It is okay for now if I have to be in long car lines two times a day times two kids and it is okay if I have to go to the grocery store three times a week or pick up every shoe thrown around the house. I can appreciate those priceless moments, when my son tells me "Mommy, you are the best mom ever," when I know I am not.  I recognized that we don't have "forever."  I mean, I knew this as I experienced the death of my mom, many years ago but somehow, when you go through a life-altering experience, it hits home in a way that nothing else does.

I am also grateful to have found a (meningioma) group online of women (and some men)   https://www.facebook.com/groups/56743583446/  to ask questions when in doubt.  Things I wonder like, how long is my head going to feel numb?  And what others reactions were to steroids.  

P.S. I can honestly say that coming off of steroids was one of the worst experiences ever!

All in all, I realized that I was extremely lucky in having the results be a Grade 1 tumor (benign.)   Although there is nothing "benign" in having a brain tumor.  Non-malignant is a better term because benign implies non-hurtful & friendly and any tumor is never friendly or non-hurtful!  

Something like this changes you.  Even though most people, (even my doctors ) are so non-chalant about it because it was benign, it is still life-altering, especially on an emotional level.

I remember standing in front of the mirror and seeing my head open the day my incision opened (during a setback) and crying, not only because it hurt, but because I imagined the heartache my
mom and so many others went through having the knowledge that they would die. (My mom died at age 50 from cancer.)

As a mother now, I understand the absolute grief of the thought of leaving your family behind. There are thousands of people each day who are faced with death, whether it be cancer or a tumor etc.. and I, well, I am one of the lucky ones. Truly blessed and grateful! And so are you, if you are reading this.  You have another day in your life to make a difference, to fight, to be a warrior.  Take it!

Thank you, G-d, & whoever is in "charge" up there for giving me a "break" and letting me go on enjoying my blessings just a little longer...

Meningiomas | Dr. Isaac Yang - UCLA Neurosurgery

WHAT I AM LEFT WITH AFTER BRAIN SURGERY

It is rather ironic that I spent the last four years of my life working for a low-income, senior citizen, housing community up until the month where I was diagnosed with a "meningioma" brain tumor - "M" for short.)  Actually, I think I know better than to think it was a coincidence. I am a big believer in the theory that "everything happens for a reason." I believe that every place and every person we interact with on a daily basis is put before to teach us a lesson in some way, even if at the time we do not comprehend the how or why.

There were over 100 elderly citizens living independently. I spent day in and day out watching some of these senior citizens literally "lose their minds."

For the most part, everyone was pretty alert and aware, but then there were those few that would forget things, they couldn't remember where their keys were or they claimed someone entered their apartment. They would forget what day it was or where they were going. And I use to think to myself, "Wow, does that suck to  lose your memory."

Here I am, 4 months later scared shi#*less that it is happening to me.  They say "short-term" memory loss is "normal" after brain surgery (well, fellow survivors say, not the doctors) but that is nowhere near comforting.

I forget if I took a shower, (um, that could be a problem!) I forget if I ate, I forget when my husband asks me or tells me something, I don't remember what I had for breakfast or what we did last week.  Sure, most women go through this because they have so much on their "proverbial plate," but not me, I remember EVERYTHING!  Or at least I use to! My dad suggested to me that perhaps this was happening from before. I don't think so!  Either way, now I say, "sucks for me!"  It is a very scary thought to not remember things and to feel like you are literally losing your mind.

I am grateful, don't get me wrong but there are moments I just want to scream!

I was age 45 at diagnosis...date of brain surgery was December 2, 2013.  My "lemon-sized M" was located in the left frontal lobe. I also donated my left kidney in 2008 (a little history there.)  I felt fine then, even after having an organ removed, no major after-effects.  I never had any head trauma, I did however, suffer from headaches my whole life. I was on birth control for over 10 years (including Yaz and Diane-35.) I wonder of course, did hormones play a role?  I only grew suspect when double-vision and ocular migraines started (although the neurosurgeon said not related! Really? I find that hard to believe!)  

What I am left with now after surgery: I am still trying to grow hair back in the incision area, but oddly enough I have lots of hair loss with the long hair I do have. It is crazy the way my hair is falling out!  I have a very bumpy indent (hard to hide) on the left side of my forehead. Sometimes I get depressed, no-good reason really, probably hormonal.  Yeah, add pre-menopause to brain surgery! Ask my husband what a joy I am to live with!  I have weight gain, probably from sitting on my butt all day blogging! LOL! I have prickly feelings in my head like needles being poked (or maybe, someone is doing "vodoo" on me!)  I have "staring spells," that I did not know was common until my meningioma group told me.) I still have poor eyesight in my left eye, and many times feel "drunk,' and like I have a mask over my eyes (the way I look lately, I should!)  I am super irritable, angry and emotional often...but hey, at least I have an excuse, right?  I'll keep telling myself that for a while!!

To those who are curious and researching what it's like after brain surgery, know that it takes a lot of time to heal and even more time to adjust to the "new you."  I know that I will never be the same, but as I analyze the situation, I recognize that I am very lucky and that there are many people who have had similar surgeries and have much more severe problems.

I am alive and AM VERY grateful!!!

BE A WARRIOR!

So it has been two months since my craniotomy and I can honestly say I have come a long way both physically and emotionally!  I am about to celebrate my birthday at the end of this month and I am eternally gratefully to G-d, the Universe, whoever is in charge!  Even though I am not currently working, I am happy in having the time and health to have taken up my "mom duties" again!  Somehow, I had lapsed in this department.  Not only was I working full-time, an hour away, somehow, I had grown apathetic and aloof.  I don't know if I can blame it on my brain tumor but having survived one, I can definitely say, changed my life's perspective.

It is okay if I have to be in long car lines two times a day times two kids and it is okay if I have to go to the grocery store three times a week or pick up every shoe thrown around the house. I can appreciate those priceless moments, when my son tells me "Mommy, you are the best mom ever," when I know I am not.  I recognized that we don't have "forever."  I mean, I knew this as I experienced the death of my mom, many years ago but somehow, when you go through a life-altering experience, it hits home in a way that nothing else does.

I am also grateful to have found a group online of women (and some men)   https://www.facebook.com/groups/56743583446/  to ask questions when in doubt.  Things I wonder like, how long is my head going to feel numb?  And what others reactions were to steroids.  P.S. I can honestly say that coming off of steroids was one of the worst experiences!

All in all, I realized that I was extremely lucky in having had a Grade 1 tumor (benign.)     I remember standing in front of the mirror and seeing my head open (as my incision re-opened during a setback) and crying, not because of my scar, but because I imagined the heartache my mom and so many others went through having the knowledge that they would die. As a mother now, I understand the absolute grief of the thought of leaving your family behind. There are thousands of people each day who are faced with death, whether it be cancer or a tumor etc.. and I, well, I am the lucky one.  And so are you, if you are reading this.  You have another day in your life to make a difference, to fight, to be a warrior.  Take it!

YOU ARE CUTE (POST BRAIN SURGERY)

I was walking through the supermarket aisle looking for drinks on Super Bowl Sunday, looking lost and the guy who works there says to me, "Can I help you?" I said, "No thanks, I really don't know what I want."  He smiled and said, "You are cute."  I smiled, said thank you and walked away, in my Yankees cap and even though it made my day, I thought to myself, "Little does he know what's under this head!"  He wouldn't think it was so cute, if he saw it!

I am two-month post craniotomy and my emotions don't stop even after surgery.  I read a post from a fellow meningioma survivor, and I share the same sentiments:  

"I am in a place of absolute gratitude and I thank G-d (The Universe) every day and sometimes, even more than ten times a day.  Sometimes when I'm alone, I suddenly get emotional and it just catches up with me and say to myself "you had a brain tumor, you had your skull opened and your brain was rummaged in and you were blessed, you survived!!!"   

I wonder will these thoughts ever go away, or do they stay with you for your lifetime?  I do know that I am blessed! 

ROUGH RIDE

So, I am having some serious trouble moving on from the whole craniotomy thing.  It's been 3 weeks since my surgery to remove a (benign) meningioma.  Thankfully, I am much better, but now I am getting paranoid about having headaches and weird sensations in my nasal passages, the tightness in myskull: from the plates and screws holding the bone flap ( I guess!) It feels very tight like your skull is ridged instead of fluid feeling. (It is hard to explain but feels super weird plus continued poor vision out of my left eye.  The surgeon says that the vision problem has nothing to do with the surgery.  Hmm?  I know I am getting into the bi-focal stage (age 45 yr.) but I am very skeptical about that not being related.  The meningioma was the size of a lemon located in my left frontal lobe, so hmmm?!  I am also super freaked out about my scar and how big it is.  I was told by a massage therapist that I should massage it and put Vitamin E on it so that it doesn't remain hard and give me more headaches in the future.  Today, I looked at the actual entry point where the worst part of the scar is and I almost fainted.  Everyone tells me it's not so bad and that it is healing nicely, but I haven't shown anyone the ACTUAL entry point.  I know this is all superficial stuff  but it concerns me, nonetheless.  I guess I got worse because I started reading blogs about other people who have had removal of meningiomas and their stories are not all pretty.  Almost everyone says exhaustion is normal, so I don't feel so bad there but one person said it could take months even years to have your brain completely heal!  Wow!

I will tell you this, in the whole scope of things, right now , everything in my life makes sense.    If you have gone through this or any life change health-related event, I can tell you that the little things that bother you will fall by the way-side and you’ll just be really grateful to be alive, as I am! I am truly trying to enjoy that feeling (at least when I don't have headaches or when I am not being a referee to my two kids who are always arguing! :o)

It's a rough ride and very surreal and I know it will be a long road to full recovery but        I keep telling myself how lucky I am and trying to learn a little more each day.

TIME TO REST

I believe I have delved enough into the logistics of what I went through physically and hopefully I can help someone out there who may be in the diagnosis research stage of meningiomas as well.  I believe it is time for me to move on with some more venting, analyzing fun and photos! 

When I think about what I went through and my crazy lack of rest, I think I must really be nuts!  Two days after brain surgery I was with my family taking our 11-year old on a Friday night to a trampoline bouncing themed-amusement place!  Luckily, it was not mobbed.  The next day, I was "shooting hoops" with my 6-year old outside, a few days later, we were at our city's holiday parade standing in the streets waiting for our daughter to go by with her marching band!  Really? 

I guess, this is why this week, I sit quietly at home typing away and trying to rest.  Sooner or later it all catches up with you.  I am figuring it is the fear of not being around anymore that makes one want to live every moment with fierceness.   Gotta remember that feeling!

LOCATION OF TUMOR

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%



(ref.  http://www.brighamandwomens.org/departments_and_services/neurosurgery/meningioma/meningiomafacts.aspx#what_is)

THANK YOU!

Here I am one more time using my blog as a vehicle to vent and make myself feel better. Don't know how that really works but it does, for me! So, here I am at that middle age, more or less (45 yrs.) The age where I get really paranoid, not because I have ever cared about age or acted my age, but because it is around the same age that my own mother (G-d rest her soul) found out she had cancer the first time. You can see why I live with the constant fear that it will also happen to me? Maybe? I know better, especially since I know about the self-fulfilling prophecy, but deep down in my sub-conscious is that deep-rooted fear that I just can't shake.

Recently, when I started feeling "weird" I thought to myself "oh, oh, here we go!" I started having headaches, blurry vision, ocular migraines and an overall feeling of not "feeling right." I kept telling my best friend, I don't feel right. She kept telling me "you'll be fine." And I kept saying, "I know my body." I usually do not go to the doctor. Yea, sure I donated my kidney and all but that was enough for me, other than the basics, you know, the doctor for pap and mammogram. So, if you know me, you know I had to be feeling really weird to go to the doctor twice in two weeks and pursue an answer, which I got! I insisted on seeing the main doctor, not just the P.A's (even though they are good too) but experience tops it all and my doctor has just that. 

The doctor order an MRI for me. Two of them as a matter of fact. Once with contrast and one without. And "wala," my diagnosis. I never thought I would be grateful to have a diagnosis of a MENINGIOMA. I will let you Google that one.  You can do a little research as you read too!

For now, all I know is that 90% of the time it is benign and I am happy to take that. I do have to have surgery but I am fortunate that it is operable! All in all, if I have to have something, I'll take this.  I don't know what else life has in store for me down the line, but hopefully, it will be what I can handle. No matter what I have to go through, I am very grateful as this happens to me on Thanksgiving weekend 2013. I am grateful for my life, my kids, my family, my friends and all my experiences, good, bad and in between! Thank you!