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...

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!

SLIGHT SETBACK - AFTER BRAIN SURGERY

Okay, so I had a little setback today. Everything was going great. I seemed to be healing very well (my scar, that is.)  As I took a shower and washed my hair this afternoon, I felt some of the scabs coming off (too much information I know, sorry.) It was not a nice feeling. For the first time since the week of surgery I felt very faint as I showered. When I came out of the shower, I went straight to the mirror to look at my head. I wanted to see what it looks like after some of the scabs had come off. I had one stringy looking thing on my hair by my incision, actually on the right side of my scar, so I pulled it thinking it would easily come off. Wrong! My God! I saw the stars. Apparently, I pulled off the scab or what felt like a stitch, although I know it was not and I exposed part of my wound.

I freaked out and started to almost cry and say "Oh my God oh my God" because it was stinging so bad, and I could see my head, and it was slightly bleeding. Just like when you pull a scab off of your knee and it is not ready to come off (like when you were a little kid,) except this is my head! 

I had a towel around me and my kids heard me freaking out. My seven-year-old came running in and was threatening to call my husband at work and I was pleading with him not to because there was nothing he could do.  Defiantly, he went and got the house phone and called his father anyway. (Thank God!) Twenty seconds later, I had my husband on the phone asking me what had happened. At this point I was hyperventilating and almost crying again as I explained to him what had occurred.

Luckily, for me, he was not at the office and was already 10 minutes away and arrived home rather quickly. He took a picture of my head (open wound) and emailed it directly to my neurosurgeon. (Again, I am lucky I have a neurosurgeon who checks his emails all the time and is great about following up with patients.) He responded immediately and said that he wanted to see me and was afraid I might need another stitch, a butterfly stitch he called it. 

When I heard that I freaked again.  If the neurosurgeon was concerned that meant I should be worried. At this point, my kids started to freak out and were concerned that I would have to stay at the hospital. We live one hour away from where my neurosurgeon is, so we made arrangements for the kids to stay with my dad and proceeded to drive there.

After insane traffic in the city, we arrived at the emergency room in the hospital only to encounter a seven hour wait, as I told by the guy behind the counter. 

Well, my husband and I proceeded to act as we know how. He, with his feisty temper, was arguing and demanding we see the neurosurgeon, who had instructed us to drive down there and I, well, I casually "flirted" with the guy behind the counter. Actually, in my condition, I wouldn't even say flirted, I would say more like "obtained sympathy."  I was in no condition to flirt. The guy asked me why I was there, and I bluntly told him, "I had a brain tumor removed and now my head is open."  Umm, I think that kind of freaked him out. 

As I filled out the paperwork, he had asked me to fill out, he got up and went to talk to some people in the triage room. When he came back, he told me he had talk to someone and he would try to get me in as soon as possible. I told him I appreciated it and that my neurosurgeon was upstairs waiting for me.  He said he understood but that I had to go through the bureaucracy of the procedure like everyone else anyway. I also had faith that my husband would pull through. He got on the phone and emailed the neurosurgeon and let him know that we were downstairs. 

A few minutes later I was instructed by the head nurse (after she took my blood pressure) to wait in my car or wherever I felt more comfortable because it would be a long wait. We decided to wait outside the ER waiting room so that we would not be sitting in the middle of all those people with God knows what problems they had. Sounds mean I know, but my husband is a kidney transplant recipient, and I did not want him subjected to any infectious room.

Within less than 10 minutes of our waiting outside, I saw my neurosurgeon coming down the hallway with his entourage of other surgeons. With a little guilt (and excitement) at the same time, I quickly walked into the ER again and the head nurse signaled to me to come in. The neurosurgeons and the other surgeons (3 if them to be exact) hugged us and we said our "hellos" like old friends while everyone was looking at us. 

They took me to a back room.  They examined my head and poked and prodded me like a science experiment. They determined that it was not infected, and I did not need stitches. Whew!  I cannot tell you how relieved I was at that point! He gave me instructions on what to take: antibiotics, ointments and instructions not to wear my head scarves anymore, as they put pressure on the wounds. He said bandannas were okay if I must wear something.

In total, we were there about only one hour, and I was grateful that I was able to go home and not have to be admitted. I definitely got to thinking about all those poor people in the waiting room with no connections, no strings to pull, no doctors to call, just sitting there endlessly waiting until their name was called.  Again, I am grateful! 

Of course, I took a couple of pictures (in the car on the way to the hospital and as I sat in the waiting room in the ER in the back room,) for my children, so they could see me smiling and not all freaked out. I don't know why, even when I'm freaking out and in pain, I always fake it and smile. I guess it helps me to keep going! 

Me in the Emergency room waiting for neurosurgeon - 1/13/14

In the car on the way to E/R - smiling for my kids

And that my friends, is my story of my slight setback!

Today, I am moving forward! Like my best friend told me, "It's going to get worse before it gets better." And I have to believe that...

MY HAIR FALLING OUT AFTER BRAIN SURGERY

I know there are hundreds and hundreds of blogs out there, especially on people who like to talk about their life experiences, and I know that this one is probably not that much different from the next but somehow, it helps me and perhaps it may help or at least entertain someone out there as well, so I continue to write and vent and share and pass the time until "reality" again.  Whatever that may be.

Yesterday, as I finally got the "green" light to wash my hair after brain surgery six days prior, I stood in the shower pulling clumps of my hair out, thankfully.  Yes, thankfully appreciating that it was the mix of blood and iodine and whatever other disgusting stuff was in my hair.  Thankful for the 90% chance my tumor was/is benign.  Thankful that I escaped the horrific possibility of what could have been.  I am grateful that I have an opportunity to continue in my children's lives and in the lives of my family and friends. That I am blessed with another day, another week and however long this life gives me. 

I am blessed that I can write about this now.  That I can look back and see what it could have been.  It makes me look at what my mother went through with her "death sentence" (cancer diagnosis) and that horrific battle.  Like the millions of women and people out there fighting cancer and disease and constant battle on a day-to-day basis, my life lesson remains the wisdom of knowing there is more to life than the day-to-day silliness we stress out about.   

Life is way too complex to just be meaningless.  Sure, these experiences change you and I for one am glad my hair fell out because I was pulling it out, not because of a horrible diagnosis.  I was lucky.  I am lucky.