Destination CHICAGO

Can you believe it, I actually took vacation time from work to actually go on vacation!!!

August 2004 is the last vacation I have been able to go on.  That was a memorable trip as it was to Egypt for a month to meet my now Ex family, but I got to see all the fantastic places I dreamed about for many years.  Since then, my vacation time ends up being extra sick days cause when the brain tumors want the day off ….. they get the day off LOL

We realized this year that my time off wasn’t the right amount and I got some days added. WooooHooo and yippy skippy for me!  The blizzard that took place in January sealed the deal and where I’ve wanted to go for some years now was becoming a reality.

Y’all have read in my previous blogs how much I love my family and I’ve got Three Great Big Brudders.  Well the youngest of those 3 is Kevin and he lives nearby so we see him when he stops by with the kids.  Big brother John is down in Florida and though it may be a few years, we’ve been lucky to drop in and visit.  He’s in Orlando so there’s Disney World, Yankee’s Spring Training and I even got to catch Elton John and Billy Joel’s dueling pianos concert.  But Steve, well he’s been in Chicago since, hmmm many years, and when he comes home for Christmas weekend it’s s the only time we get to see him.

“Suz, when are you coming to visit?”  He even gave me a plane ticket gift card for Christmas one year.  I kept trying to explain, that I’ve learned the hard way to listen when I wake and “the body” says ummmm No, you’re not going anywhere today.  So unless it’s Friday Night to Sunday Night, vacation hasn’t been possible.  I have found places to go and people to see on the weekends,  Philadelphia Sci-Fi (PhilCon).  Although most of my weekends now are with Mom and Dad, checking up and keeping them moving around.  Lots of Laughs too.  But no trips to Chicago till Now!

When we worked out my correct time off I smiled and said, I know where I want to go this year!  I even hummed Chicago Chicago It’s My Kind Of Town LOL.  The question became when, when is the best time for work, best time for mom and dad?  Then it happened,  I was supposed to go to the Heroes & Villians FanFest at the NJ Meadowlands Expo the weekend of January 22-23rd.  FanFest to meet the stars of TVshows Arrow, Gotham, Legends of Tomorrow and The Flash.

However, Mother Nature had other plans and the Blizzard happened.  Mind you that I was not sad about the snow, being winter girl and it was the weekend before my birthday, you can read all about my love of snow in previous blogs.  But, it did screw up plans for the FanFest, although many of the stars were there and lots of people were in the hotels around, it was fun to watch the postings on Facebook.

I was a tad bummed about missing the HVFF until I went to the website to see where would they be next……. Chicago March 12-13!!  A quick text to Steve, “Hi Steve, just wondering, how is the weather in Chicago in March?”  I explained why and he told me to think it over and get back to him.  The plan was in motion, in my head at least,  FanFest 12-13 and how great because Steve’s birthday is on the 10th.

A few days of thought, and planning with Work and Mom/Dad for the time away and things were set.  Of course, what do I wear, had to get some new things because I didn’t want to look bad for Steve and his friends.  I actually wasn’t nervous, of course I do my best planning and thinking at the last minute.  Including repacking 3 times, I was worried about the 50lb weight of the bag (it only came in at 29lbs).  Last minute trip to Best Buy for a charger to go in my purse to make sure the phone stayed ok every day.  I was excited, visit with Big Brudder Steve, FanFest (Colin Donnell, Oh My) the Sears Tower and meeting Steve’s friends.  Oh My I’m actually taking a vacation!

Well the plan and vacation sure did come together and I arrived on March 10th staying till the 15th, and what a Great Time I Had!  I went to so many places, so many things to do and see,  such great food and tons of photos.  They can’t fit in 1 blog LOL. I’ll let you absorb this one, feel free to read it again or look back to previous posts.  I’ll be blogging about the Destination Chicago Adventures over the next few days, including new friends, the H&V FanFest, scrumptious food, the cute cat, museums, views from rooftops and a very memorable cab ride.

Sing along with Frank from Robin and the 7 Hoods ……. “My Kind of Town (Chicago Is)”

Go Grey In May! My Story xo

May is Brain Tumor and Brain Cancer Awareness Month!  This is one of MY Ribbons that I wear proudly and I know it shocks many people when I casually say yeah I have a brain tumor or 2.  Which I always follow up with, I always dreamed of living with a foreign body ….. I just figured he’d be French, Italian, Irish, Portuguese, or the like.  LOL

Y’all must know by now my theory on life is that Laughter IS the Best Medicine.  Meghan Trainer can tell you it’s “All About That Bass,” but I say It’s All About That Laugh, bout that laugh, Positive Attitude”

I thought about how to start this next part and just kept coming back to …… Here’s My Story, to which has caused me to turn on youtube to watch the Brady Bunch intro.  haha But seriously folks, this is my story and that of Bambi that saved my life

In 1995 I was working at the Warner Bros. Studio Stores in Atlantic City, NJ, just downstairs from Trump Plaza Hotel and Casino.  (the Raintree Forest Cafe is there now)  Assistant Manager, if you please, in charge of the backroom …. they did let me out on the floor too LOL.  In love with all the stuffed animals and Queen of Plush Mountain, think Elmyra from the “Tiny Tunes.”

September and we were moving the store around and doing inventory, long night and closing up the shop.  It was around 2am when I left and on the Atlantic City Expressway headed home.  Roads were quiet, hard to see and then just out of your worst nightmare ……… Deer In Headlights!

They say you should just go ahead and hit the darn animal, it’s usually more damage and problems when you swerve and they might be right about that.

However, I swerved, first to the right (and I wasn’t going that fast, yet) and down the side of the road I went. HOLY CRAP! Shaking my head and a bit freaked out I hit the gas to try to get back up the side and on the road and yeap, Suzie Lost Control of the car.

I ended up racing across the road to the center aisle to which my car did a lovely 180 turn on that now flattened grass and the tree helped me stop the car.  Thankfully, looks up to the sky, Not a single car was on the road during this nightmare.

My first car, a beautiful white VW Jetta, nice and heavy car and no there was no airbag then.  The seatbelt pulled tight and I would walk away with just a bruise from that seatbelt across my chest and a bit of a headache.  That’s what I thought is all I walked away with.

Then this nagging headache started, I’ve had them in the past here and there.  This one, well this was lasting for days at a time.  Trip home and to the Doctor in Sept., oh must be some stress let me do some manipulation and crack your neck.  Cool, and all gone.  Till October ……. same thing and Doc. same thing.  November, I’m seeing a trend and yes again that’s all the Doc did, but gave me some stronger pain pill.

~ Side note, with everyone I worked with being married with family I could only get either Thanksgiving or Christmas, I came home for Thanksgiving and will never forget because that was the last celebration I’d have with my Grandma. ~

Through Grandma’s illness, I tried to forget about my head, kinda hard to do that but there was important things and people to think about.  December’s trip the Doctor was much the same and the New Year came.  With 1996 brought a Blizzard and Grandma left us early January.  I will tell everyone and maintain for the rest of my life, that Millie left us so she could have a talking to God and shoo shoo me back in a little over a month.

With the loss of my Grandma and my birthday coming up, I was fed up with these headaches.  People would think get some rest it will go away …. NOT …. they only got worse when I would lay down.  A trip to the ER in the Atlantic City area, that doctor gave me a shot of some strong stuff, according to him.  That strong stuff did NOTHING for me.

~ Side note, love the movie, Kindergarten Cop, but got really sick of a couple of my friends telling me over and over ……. “It’s Not A Tumor”

Finally this trip to my Doctor and he’s going to do a Cat Scan, on my sinuses.  I told him that’s really nice but I want you to scan my entire head and neck.  Good thing too that I pushed because he would have treated me for a deviated septum and missed something much MUCH Bigger than that.

I didn’t get the call, it was left on mom and dad’s machine.  The call I got was from mom, trying to sound normal.  In the office at work, mom says to me, Suze you need to come home, Dr. L wants you to have another test.  My response, Mom it’s the yearly inventory and the other managers are off to the California conference so it’s all on me, can’t he wait.  Mom says no and finally she says, they found something.

MRI visit was an interesting experience,  a cross between what is going on and feeling like going into a torpedo tube.  Walking out of the room, there’s a whole hell of a lot of people looking at the screen.  I trip and then walk into the left wall (though I’m walking straight no turns) the one tech says, “Do you walk like that often?”  Me being me says nawww the wall jumped out.  Then I looked at all their faces and took 2 steps backwards and said, well actually lately I sure do.  He says, “well that would be expected, come have a look, you have a massive tumor growing in your head.”

Well to say mom and dad were upset would be the understatement of a lifetime.  Me, I had one good cry, can’t say I was shocked, maybe a bit surprised by the size of it.  Mad as hell for sure because you see because my Oncologist KNEW this could happen.  At least 1% of children treated the way I was for Leukemia got brain tumors.  All the times she focused on my weight, don’t get me started on why I HATE the words Obesity and Thyroid, I was complaining about headaches.  I told you above I had them often, I’d see her, once a month, then every 3 months then every 6 months …… since I was 9.  “How are you this month Suzanne?”  Well, I’ve had headaches, I fell and sprained this ankle, I fell and sprained that ankle, I’m all bruised from walking into doors.  “Ok well I’m concerned about your weight.”

I won’t say she missed it, ok never mind I WILL Say She Missed It.  The part that pisses me off the most, is that she never warned us. never told me this could happen, never said a word about what to look for.  I will never name her in public, but I did put her out of business.  She never answered this simple question.  1% of all patients? 1% of that hospitals patients or 1% of her patients had this happen.  To me those are 3 very different numbers.  I wrote papers afterwards and it was totally confirmed some years later by St. Jude’s Children’s Hospital that Children with Leukemia (treated the way I was) get Brain Tumors.

The size of mine gave me no choices to look things up, no choices to ask around, we literally opened up my healthcare provider book and picked a name.  That Doctor tells me when I ask (because of work and wanting to donate my own blood)  Not to wait longer than a month for surgery.  I wasn’t scared, upset and pissed yes, but scared no, because it hit me as I saw a vision of my Grandma that she was gonna make sure it was ok.

Surgery was set, Mommy, Daddy, Stephen, John and Kevin were all ready to be there for me.  My brother, John, took me to the movies the Saturday before to see, “Mr. Holland’s Opus.”  Little did I know that would be the last time I would hear anything music or movies or TV again in stereo.  It’s a great movie and yes no doubt about it when those questions are on Jeopardy or the radio, I’m the first to answer what year it was released, who starred in it, what’s the name of the symphony.

As I am here typing this, that surgery went as well as it could.  It was a Meningioma a slow growing tumor that was there for at least 5 years, probably longer.  It took up all the empty space you see in photos of the head and brain, back by the neck wrapped around my brain stem.  Yes, I lost my hearing in my left ear, but most people don’t even notice, just don’t try to talk to me too much in noisy restaurants.  My eye likes to close and my smile is a little uneven, but ask my mom and she’ll tell you all the actors, new anchors and performers whose mouths are a bit off.

Sure there’s been other side effects including a second and third bought with my Grey Matter.  But I’ve met so many tremendous people along the way and some …. HELLO GORGEOUS, Doctors.

Life is roller coaster, ups and downs and we must learn to live with them and through them.  No need to look into the Why this happened to me, the What If’s, those will drive you crazy.  Yes get mad if you want, yell now and them (not directly at someone, I like to just yell at the ceiling) a good cry now and then won’t hurt ya either but Laugh and Live and Love everyone around you as much as you can whenever you can.

May Is Brain Tumor / Brain Cancer Awareness Month, Our Color Is Grey …….. Show Your Support!  You Can Wear Grey, Dye Your Hair Grey, Put On A Grey Ribbon, Share My Story ….. go ahead I dare ya LOL  I thank you for your support and for reading today’s blog post.  In the words of Forest Gump, That’s All I have To Say About That.

This isn’t a Scare You story, It’s not a Warning Story, It’s not even a Bashing Story …….

This Is My Story xoxo

Go Grey In May

Who I Am …

When you start a blog, Flickr, Tumblr, Facebook or anything in ‘Social Media,’ they ask you to fill out your profile.  Since starting this blog I’ve been staring at that blank page that is “About You.”  Wondering what should I put here, what should I say.  Should it be short or long, funny or straight, how much of a glimpse into me should I let people have.  Someone that replied to one of my posts told me to just let go and be myself.

I am many things and when I let go ….. long winded LMAO  Instead of just leaving it as my “About Me” page, I’m posting it here today, for all to read.

Here’s A Song To Play While You Read All About Who Is Suzie LOL

I am Suzanne, I am Suzetta, I am many things but most seem to remember me for my giggles.  I work during the day with numbers and thank goodness for my fingers, calculators and computers to help me count correctly.

I’m a Survivor of Childhood Leukemia, Brain Tumors, Skin Cancer and Uterine Cancer and I AM Fearless!  I wear my colors proudly, Gold, Orange, Grey, Black and Peach.

I find Hope and Strength in those that surround me….. my family and friends.  I do my best to Advocate and Educate, to Help and Inform people about the American Cancer Society and Stand Up To Cancer.

I do my best to make everyone smile, I love the sound of laughter and it does help to make things better!  Please don’t get me wrong, I do know how to be serious and get things done.  I’ve just learned that Laughter is the best medicine.

I enjoy movies and tv shows that aren’t called “reality.”  You can find me quoting lines from various movies all the time, I can’t help it, can you?  I admit, we’re gonna need a bigger boat and NEVER forget the cannoli.  There’s Breakfast at Tiffany’s, Cat Ballou, The Great Escape, Jaws, The Godfather, The Quiet Man, The Magnificent Seven add in for fun Caddyshack, Clueless, Legally Blonde, Clue, The Goonies, Animal House, Stripes we’ve also got Indiana Jones, Silence of the Lambs, Shawshank Redemption, Forrest Gump, The Matrix and so many more.

Yeah that looks like a lot of “guy movies” LOL.  I grew up in a very close family, 3 older brothers (Stephen, John, Kevin), Dad and Mom.  We LOVE to quote those movie lines, Dad and I are dangerous together and it drives Mom crazy hahaha.  I LOVE my family above everyone and everything else.  I miss them when we are apart and I carry them in my heart every moment of every day.  Those family members that have gone on to be my angels follow me and I can feel their love around me.  Grandma Millie, Aunt Kay, Cousin Jack, Aunt Betty, All the Byrnes and there are those that I never got to meet I do my best to make them all proud.  There is one special person that will always be ‘my friend,’ and his hand is forever on my shoulder, Msgr. Loreti.

Music moves me and there is a song for everything you are feeling.  Be it Glen Miller, Duke Ellington, Louis Armstrong, Bing Crosby, Doris Day, Dean Martin or maybe it’s Bon Jovi, U2, Cyndi Lauper, Wilson Phillips, ABBA, Def Leppard or maybe it’s Johnny Cash, Patsy Kline, Loretta Lynn, Kenny Rogers, Shania Twain, Martina McBride, Garth Brooks or maybe it’s Neil Diamond, Barry Manilow, Englebert, Michael Buble, The Carpenters ………… there IS a song for everything you feel and every experience in life.

I’m a big fan of art, museums and history.  I can get lost in the Metropolitan Museum of Art.  I was very lucky to visit Egypt and see all the places I’ve been dreaming of for many years.  I enjoy going to paint at our local gallery, Art & Soul Galleries, where my ‘sistas’ paint giggle and pour too xox

6 ½ years ago I found a new outlet for fun, friends, music, creativity on the internet, a Virtual World called, Second Life.  That’s where Suzetta Moonites was born and it is so much more than a game.

Second Life is where I laugh with my friends, explore some amazing buildings and artwork.  I’m able to attend a Live concert every hour of the day and many of these folks are singers in what we call RL (real life).  The sounds and music of my friend Bill Tigerpaw, a British fella who’s voice is lovely.  There’s also Hogan Bailey, Brett Hansom, MrMikie String, Elizabeth Wantanabe and many more.  Instrumental Musicians, Anj Gustavson, Torben Asp or Gootek, and if ya just wanna dance and sing along the DJ’s are in the house like my friends Shy (my BFF), Charity and Dione.

I joined SL for 3 reasons ~ 1) My friends were all into World of Warcraft and that was way to difficult for me to understand. 2) I saw an episode of CSI:New York and said that looks cool 3) I was on the American Cancer Society Website and saw they do a Relay For Life in Second Life

I landed in August of 2008 and I’ve really not looked back.  In SL I am a Singer, ok mostly they come to my shows to hear me tell corney jokes and laugh, doing their best to get me to laugh throughout a song.  I am a DJ, I told you I love music 🙂  I’m also a designer of clothing, SweetRed’s Designs.

I am a team captain of Rays Of Hope for the Relay for Life of SL.  They started the Relay in SL in 2005 and since then to the start of 2015 have raised 1.6 million U.S. Dollars.

We have teams like other Relays (158 teams so far this year), we hold a lot of fundraisers, we are Global as I Relay with friends in England, Germany, Holland, The Netherlands, Australia, Scotland, Canada, other parts of the United States and many more countries.  This is the ONLY Relay where you don’t have to walk a track, so patients going through their chemo can relay from their bed.  Oh, we are also ranked #17 in Relay For Life across the globe by the American Cancer Society.

I can be “long winded” when I’m passionate about something.  You will find me writing on my blog about my RL and SL, about Music, Art, History and Random things that tickle my fancy.  You’ll see stories about Snow and Daisies, Love and Dislike, My Friends and My Family.  You’ll learn much more about my cancer journey.  You will be a part of Relay For Life in No Time and perhaps come and explore Second Life with me.

I am Suzanne, Suzetta, Suzie, Daughter, Sister, Reds, SweetReds, Q, Mac, Loch, Sista, Gigz.  I am me and I look forward to reading your comments as you follow my journey and musings on Life.

Suzie in the Snow 2015Suzetta ROH Kickoff

Life Changes When You’re 9

Here’s the next post in my ~*~ Beginnings ~*~ It’s where my life changed and began again.  A realization kicked in as I approached my 9th birthday that Life Changes In A Moment.

Happy go lucky Suzie, had a great childhood in a wonderful small town where everyone knew everyone (many related to each other).  I did ballet, tap, twirling and still had time to play with my friends and get the homework done.  I was even the weather girl in the local newspaper hehehe just mood pictures of me to show if it was rainy or sunny.

Weather Girl Not A Fan Of Rain

Weather Girl Not A Fan Of Rai

Honestly, I don’t quite remember how it happened.  It’s not that I haven’t asked, when you are young things sometimes just blur together.  I don’t remember being tired, I can tell you what my 3rd grade classroom looked like but I can’t remember having to put my head down on the desk to rest.  I remember the 3 flights of stairs up to that classroom but I don’t remember not being able to walk them.  I remember the kids in my class, I remember going outside for gym, but I don’t remember not being able to play.  I don’t even remember being in the doctor’s office.

I remember being in school, I remember laying on the ‘love seat’ in our living room watching someone pace in the dining room, I remember the phone ring.  The next thing I remember is being in the car, Dad driving and mom upset.  We’re on the George Washington Bridge and Dad’s banging the wheel cause the directions were bad.

(side note, do you know if you take the GWB on the lower level in the right lane, it takes you to the Deegan Expressway, which takes you to Yankee Stadium)

NY Yankees Logo

Dad says, I’ve never been able to get to Yankee Stadium and there it is, to which I said, that means we should go to the game Dad.  We can’t , it’s January 😦

I don’t know how we got back on the right way, I remember being stuck at the light and the guy spitting on the windshield to wipe it off with newspaper for money.  We parked the car in the lot and walk, I remember looking at the walk up to the hospital, I could never forget that, it seemed like the sidewalk went on forever and it was almost a severe angle on a mountain hill.  Daddy carried me, with mommy walking next to us telling me it was going to be alright.

Trust me the angle of that hill was OMG steep

Trust me the angle of that hill was OMG steep

Asking Mom years later to fill in the blanks to kind of complete my memories, here’s what I was told.  As stated I was in 3rd grade and a vibrant sparkly tomboy.  Running and doing what I can always with the giggles.  Suddenly, I couldn’t walk the stairs, I kept putting my head down on the desk and sitting out of gym.  My teachers noticed, Mrs. Truncellito and Mrs. Elin specifically.  They were having the yearly parent teacher meetings, my third grade teacher, Mrs. T pushed up my parents meeting.  The day after that meeting mom had me at the pediatrician who ran some tests and told mom he thought he knew what it was.  The phone ring that night I remember was Dr. Poch, my parents met with him and he sent me to Columbia Presbyterian / Babies Hospital.

I will write more about my experiences during my 14day stay at Babies Hospital.

For now I needed to tell this start of the story.  This was the new beginning of my life when I turned 9 and found out I had Leukemia, A.L.L (Acute Lymphocytic Leukemia).

I found my heroes in life during this time.  Dad, Mom, My 3 Big Brothers, Mrs. T, Mrs. Elin and a few more.  Don’t be sad for me, don’t ever be sad for me because I live through laughter and love.  I have Hope and too many people in my corner fighting with me including those that are now my angels above!    I AM a Survivor and I’m Fearless!

Life is meant to be lived, there really is a reason for everything.  Plan for the future, for sure but Life Changes In An Instant, I’m living proof of that.  Laugh as much as you can, Love as many people as you can, Sing and Dance always as though no one is looking, be Happy that you’ve woken up to a new day and Live Each Moment.

ChildCancerRibbonMagnetLeukemia Be Strong