“Sometimes you need a second chance, because you weren’t quite ready for the first.”     – Unknown

Hello.  

It’s me.  

I was wondering if after all these years you’d like to meet.  

Is anyone else obsessed with the new Adele song?!

It’s been a while again.  Like a year.  I’d really like to get back into posting on a regular basis because I truly do enjoy writing.  I’ll do my best.  Here’s what’s been going on…….

I’ll bounce around a little bit in this post.  Sal and I just returned from a visit to Penn a few hours ago.  We saw Dr. DeMichele (my out-of-town oncologist) and Dr. Czerniecki (my breast surgeon and the researcher who heads the clinical trial that saved my life) for 6 month follow-up appointments.  Things with me are GREAT!  Knock on wood – I very rarely even get a cold and when I do it’s not like the colds that I used to get.  They last for about 2 days.  I look and feel healthier than I ever have in my entire life.  And I’m not just saying that.   My weight is healthy, my diet is healthy and I feel strong.  I exercise regularly, I lift weights and I’m planning on returning to work on February 8.  I’ll still be following up with all of my doctors – and I have a slew of them!- on a regular basis.  I see 2 oncologists, a radiation oncologist, a breast surgeon, a plastic surgeon, a cardiologist, an endocrinologist and a family physician.  And an eye doctor, a dentist and an OB-GYN!  I think that’s it.  I’m sorry if I’ve missed anyone!  I know – I sound like a train wreck!  But, seeing these doctors on a regular basis is so important.

I’ve decided that I’m not going to die for a very long time.  As Edie Brickell once said, “You’ve got a lot of living to do.”  That was right after she sang about the same girl “shooting up junk in the bathroom” so it’s like comparing apples and oranges, really!  I’ve decided that I want to be like Forest Gump.  “It was August when Barbara got the cancer.”  No, not like that!  Forest Gump was one of the coolest movies because of all of his very random accomplishments.  I want my life to be like that.  So far, we’re on a great track.  I have a lot of really cool things that I’m planning on bringing to fruition – a non-profit organization that’s on the rise, a lot of fundraising, books, lectures, CDs, raising 3 great kids and growing old with my husband.  Oh, and I’d really like a sandwich or a pizza named after me!

I told you that I was going to jump around a bit and now I’d like to talk about the clinical trial.  (Clears throat)……Dr. Czerniecki checks my bloodwork every 6 months.  He believes that what he checks is 98% accurate in detecting cancer versus an MRI that is 60some%.  He monitors my immune response rate and knows that if the immune response rate drops then the patient is at risk for recurrence.  Vaccines are the future of cancer prevention and treatment.  And they don’t cause autism for Christ’s sake.  I’ll post more about the vaccine in another post.   There is a lot of information that I’d like to share.

We are currently amping up for a Thanksgiving visit to see my sister in California.  The 5 of us are beyond excited.  My Mom and Aunt will be meeting up with us as well.  We’re planning on doing all of the touristy things because I don’t know when we’ll get back there.  Chase is excited for LegoLand and Jameson and Cameron are excited for Disney Land and the San Diego Zoo.  Mom and Dad are excited to relax by the pool…..and invade my sister’s apartment with a family of 5!

We took the kids to Disney World last December and I’m not sure if I’m mentally prepared for another Disney visit so soon.  Let me fill you in.  Disney is defined by Webster’s as the most magical place on Earth; a judgment free zone.  I’m not sure if I speak for parents everywhere but Disney is defined by Sciandra, a mother of an 8, 7 and 3 year old, as a mostly magical place that was created to test a parent’s endurance, patience and will; a place filled with judgment by other parents (and definitely by the 70 year old grandparents who were drug along by their 35 year old kids who can’t manage their own kids); a place where only the strong survive.  The watching, the judging – look at the baby, look at the baby:  Yes, this kind of judgment.  For example, just as we were getting off of the plane and heading towards the magical express (because what isn’t magical in Disney?!) Sal pinched Cameron’s finger in the stroller.  By her screams, you’d swear that we had just kidnapped her.  The perfect lady in front of us gave us one of those, “my family is so much better than your family grins”.  You can picture it, I know you can.  We happened to sit right across from the perfect family on the “magical” bus.  I grinned back at her when I noticed her 6 year old still sucking a binkie.  This is the kind of shit that I’m talking about!  By the end of the week, everyone is a bit tired and a little cranky.  I found myself ready to kick Mickey Mouse right in the privates for being so damn happy.  Still, despite all of this, Disney World really is the most magical, happiest place on the planet and I’m happy that we’re fortunate to be visiting Disney Land in a few weeks!

We had a lot of exciting things happen this year – mostly all good stuff!  We had only 1 trip to the ER, I believe.  No, 2 trips to the ER.  I’ll fill you in on the episode I like to call, “Tuesday Bloody Tuesday”.  Chase, my tough guy, had a little accident at the park after school and put his teeth through his bottom lip.  The big man looked pretty bad for a few weeks and did need stitches.  He was so brave.  He didn’t even cry.  Considering I’m prone to passing out with this kind of stuff (ER visit #1 – long story!), I was happy that I didn’t hit the deck when he ran over to me at the park covered in blood.  Really.  He was.  Hence the name taken from U2’s, “Sunday Bloody Sunday”.  He didn’t damage his baby teeth and they fell out on their own a few months later.  His adult teeth came in and he looks perfect.

Besides my kids and my husband, what I’m most proud of in 2014 and 2015 is Paint Pittston Pink.  Thanks to Qiana Lehman, we became a registered 501c3 organization.  In 2014, we were able to donate $30,000 directly to breast cancer research at Penn.  In 2015, we were able to donate $50,000 to Penn.  $80,000 for a brand new organization in 2 years is something that I’m so excited about.  We have great things in store for the future and have a fundraising goal of $100,000 for 2016.  Qiana and I have a fantastic committee and a great group of volunteers that work with us – Kara, Chris, Lisa, Joleen, Jay, Melissa, Kristina, Cindy, Meredith, Erin and Bob.  Qiana has become a great friend and business partner and I don’t know what I would do without her.  We compliment each other nicely.  We’re planning on doing some really amazing things in collaboration with one another.

There’s nothing more humbling than being recognized by your community.  Paint Pittston Pink was the top news story by The Sunday Dispatch in 2014.  I was extremely honored and totally taken off guard to be named the 2014 Person of the Year by the same paper.  The community’s embrace of our events has been beyond amazing.  I think that we’re supported by so many because I’m living proof of Dr. Czerniecki’s successful research.  Donors know where their money is being sent.  This clinical trial costs $30,000 per patient and we’re so happy to be paying it forward.  I hope that one day when my children receive a preventative vaccine they can be proud in knowing that their Mom contributed to the funding of it so that others don’t need to endure chemo, surgery and radiation treatment.

In another post, I’ll attach the links to the newspaper clippings for 2014 and 2015.  Some really great stories were written about Paint Pittston Pink.

Listen, you know that we go big or go home!  Well, I guess that I needed the full cancer experience.  I developed lymphedema in my left arm, mostly in my fingers in the spring, and I’ve been receiving treatment from a physical therapist.  What a pain in the ass.  Anyone who suffers from a bad case – God bless you.  Seriously.  The compression wraps can not be hidden and the sleeves are U-G-L-Y.  I’m hoping to get the swelling completely under control soon.  It’s really not that bad as it’s mostly in my fingers.  Sadly, I won’t be wearing any jewelry on my left hand.  I’ve moved everything to the right hand in case anyone is wondering what’s up!

So, the title of this post.  It’s pretty accurate.  I’ve given up a lot of stuff in trade for something that’s more important.  I can’t remember the last time I got drunk.  I honestly can’t remember.  Once in a while I feel like it would be fun to go nuts again!  But it’s not good for me.  Does this make me a dud?  Probably!  I don’t smoke, I really try to limit sugar, I eat very little red meat and mostly only organic fruits, vegetables and white meat.  BOOORRRING!!!!  I have discovered Nutella and Middlesworth Kettle Cooked BBQ chips, however!  Truth be told, I still feel as though I’m alive for a reason and I don’t want to blow it.  When Dr. Czerniecki emailed me after my very last vaccine 1 year ago, he said that my immune response was back to normal – use it wisely.  So that’s what I’m doing.

It’s been too long since I’ve written it…….

LIVESTRONG and God Bless!

“Dear past, thank you for your lessons.  Dear future, I’m ready.  Dear God, thank you for another chance.”  – Unknown

Wow!  It’s been a LOOOOOONG time since I’ve blogged.  I wanted everyone out there to know that I’m back!  I’m going to start taking the time to do this again.  All is going well.  I have so much to fill you in on – all good things, all good things!  I’ll get my shit together and will pen something exquisite this weekend!  Stay well, my friends!

Thank you, Lois Grimm, for the amazing pictures of my family and for the well-written article.

http://m.citizensvoice.com/arts-living/fightingback-1.1791097

I apologize for not writing in a while.  Now that I’ve joined 2014 and am an official member of Facebook, it’s just so much easier!  Here’s what’s new…..

I realized not too long ago the purpose of all of this – my purpose.  It’s crazy to know that at the age of 36 which I think is pretty young.  Right now, I’m exactly where I’m supposed to be, doing exactly what I’m supposed to do.  Everything in my life – grade school through high school through college, making friends, learning how to network, cancer, this blog, everything thus far has prepared me for this.  What you’ve been bearing witness to since August 17, 2012 has been the start of my own non-profit organization called Paint Pittston Pink.  Let’s back up…..

All of this started last May.  Paint Pittston Pink began as a very small idea. My initial goal in approaching the City of Pittston was to inquire about selling breast cancer awareness flags to line Main Street for the month of October, national breast cancer awareness month. Needless to say, this idea spiraled into something much larger than any of us could have ever imagined. Our flag sale turned into a 5K and Family Fun Walk which led to a celebrity bartending night which led to a silent auction/beer and wine tasting event along with a yoga class, spin class and zumba class. Many local businesses couldn’t wait to have their store front windows painted and planned their own events to raise money to support our efforts. It has been truly humbling to watch The Greater Pittston Area join together in support of such a worthwhile cause that has directly impacted my life.

And here we are.  The success of the weekend was phenomenal.  The outpouring of supportive was overwhelming.  I set a fundraising goal of $50,000 knowing that we’d never reach it.  I also didn’t think that we’d come close.  However, we did.  This weekend, checks totaling $30,000 will be sent to The Pennies in Action Fund at The University of Pennsylvania.  A formal check presentation will be done with Dr. Brian Czerniecki, Uschi Keszler, Marie Kromplewski, and staff members – Susan, Liz and Mike at the end of January – on the day of my last vaccine.  Unbelievable.  To think that 1 year ago I was begging to be accepted into this trial and now, together, we’re paying for 1 person to receive a life saving vaccine (it costs $25,000 per patient).  We freaking did it and I couldn’t be happier.  I’m pretty damn proud, too.  One person can make a difference.

As a side note, all of my numbers are almost back to completely normal.  My immune responsible has been phenomenal – even better than what Dr. Czerniecki expected.  I am fairly confident that if I did not receive this vaccine, I would be looking at a cancer recurrence for a type of cancer that is very difficult to treat.  I had zero antibodies for HER2 at the beginning of this trial.  None.  Zilch.  I count my blessings for this trial and this research nightly.

Back to it – like anything, there were some minor bumps along the way.  Many people didn’t think that we’d pull it off.  You know, though, after reading this blog that I’m motivated by naysayers.  I love showing people that I CAN DO IT after they tell me that I CAN’T.  Never say never to me.  Where there’s a will, there’s a way.

Our community pulled together to support something bigger than all of us; something that we truly believe in. These events weren’t about me. These events were about each one of us and how cancer affects all of our lives. It has been said that when a loved one has cancer, the entire community has cancer – because it takes a village – an army in my case. As an army of supporters, my area should be so proud for all that we’ve accomplished. For those of us who are lucky enough to have children, our legacy will live on through them. As a close-knit community, it is my wish that our philanthropic spirit will live on in events such as this.

Things got very busy with Paint Pittston Pink but not really until 2 weeks before the event.  I had a great group of people that I worked closely with.  My right hand lady was Qiana Lehman.  Qiana and I work very well together.  I also had a friend in Jay Duffy who was instrumental in making sure that the 5K ran smoothly.  Kristina McHale was responsible for anything fun that happened on race day – window painting, entertainment, etc.  My silent auction team consisted of Joleen Lazecki, Lisa Licari, Kara Martin and Chris Skibitsky.  They made everything pretty!  Erin Berlew was the lady behind the lens.  She took about a gazillion photos!  I couldn’t have asked for a better bunch of people to work with.

I’m proud that Paint Pittston Pink didn’t interfere with my daily life.  My kids always have and always will come first.  I worked on everything after my kids went to sleep at night.  Sal passes out on the couch early so it didn’t interfere with me serving him his dinner, ironing his clothes or rubbing his feet after work either.  Uh huh.  After he drew my bubble bath, massaged my shoulders, fed me Bon Bons and read me the latest US Weekly.  I just wanted to make sure that you were paying attention!  It’s not 1984.  And I don’t remember my parents ever doing those things, either, so give me a break.

To answer the big question – YES, this will be a yearly thing and I hope that it grows bigger and bigger year upon year.  Cancer is a part of my life and it always will be, unfortunately.  I hope, though, that cancer isn’t the scary diagnosis that it is today.  I hope and pray that a cure is found within my lifetime.  And if it doesn’t happen in my lifetime, then please, God, let it be within my children’s lifetime.

Here’s my rant for today:

Remember that time that I asked for your opinion?  Neither do I!

If you don’t like the way I’m living my life, that’s too damn bad.  If I’m doing something that you don’t agree with then be glad that you’re not me.  I don’t tell you how to live your life so you shouldn’t offer your opinion on how I live mine.  Until you’ve walked in my shoes you can butt the hell out.  And I mean it.  You don’t know what it’s like to be given a shitty diagnosis and undergo surgery after surgery and treatment upon treatment.  You also don’t know what it’s like to cry yourself to sleep at night worrying that you’re going to die way too early and your kids won’t remember you.  You don’t know what it feels like to carry a heavy burden worrying that you’re going to abandon your spouse left alone to raise 3 kids.  So, buzz off.  Right now I feel really good – physically and emotionally.  I also feel so proud about doing something philanthropic that means a lot to me – something bigger than me that I really believe in – and should be proud of it, too.

I’m not the type to sit around and watch the grass grow.  I’ll never take pleasure in sitting on the porch drinking lemonade and swaying in a rocking chair.  I’ve stopped to smell the roses……and they make me sneeze.  If that’s what you like to do, go nuts in your rocker.  I won’t judge you as long as you don’t judge me.  Each one of us is entitled to do as we please.  And I’m here to live – to jam pack my days with excitement and as much life as I can live because none of us know how much time we have so we should make the most out of every single day.

I’ve gotten to the point where if you have the nerve to ask me an inappropriate question, make an inappropriate suggestion or give me inappropriate feedback you will get an honest, inappropriate answer.  I don’t really give a flying YOU KNOW WHAT what you think about me.  I’ve worked too damn hard on every aspect of my life to allow room for negative people.

The haters gonna hate, hate, hate, hate, hate and the players gonna play, play, play, play, play!  Damn you, Taylor Swift!

Thank you very much!  I feel better now!

What else has been going on?

Ladies in Pink

I’ve never been a huge fan of public speaking, mostly because I get nervous.  I’m usually ok as long as I read from a prepared paper.  So, that’s what I did and I actually loved it.  I was invited to speak at an event called Ladies in Pink the weekend after Paint Pittston Pink.  It was an amazing event.  There were 600 women in attendance – those going through treatment, survivors, supporters, etc.  It’s a wonderful organization that helps cancer patients in our area.  I am so proud to be a part of this group and can’t wait until next year.

Halloween

We had a great time trick-or-treating with our friends.  You’ll never guess what the girls dressed as – Anna and Elsa!  I wanted Chase to be Olaf but he wouldn’t have it.  He chose Wolverine instead and I can’t say that I blame him.  He’s in kindergarten now.  Image matters!  If you haven’t heard of Elsa, Anna or Olaf then you’re either living under a rock or you don’t have children!  They’re characters from the movie, FROZEN.

Here’s my favorite pic from the past few months:

Cameron isn’t the best napper.  OK, she’s a terrible napper!  Cameron passed out right on the floor in the kids’ elementary school during their Halloween party.  I wish that I’d had yellow caution tape and a piece of chalk to draw around her!

A few months ago a grade school classmate of mine was diagnosed with Stage IV colon cancer.  I received the extremely upsetting news about his passing the day after Halloween.  He was 37 years old and leaves behind a wife and 2 children as well as many family and friends.  Cancer is a terrible disease and we need to find a cure sooner than later.  37 is way too young to die.

Disney

We’re being terrible parents and are yanking our kids out of school for 1 week in December.  I told the kids’ teachers that this is the closest to home schooling The Sciandra Children will ever get.  God Bless the teachers, God Bless the home schooling parents – I don’t know how you do it.  The puzzle was Sal’s idea!  I’m not sure who’s more excited – the parents or the kids!

Next on my list is to turn this blog into a book so if you know of anyone that would like to work with me, please pass my information along!  Go ahead – tell me it will never happen.  I dare you!

I promise to stay more updated with this blog.  Thanks for reading and have a great weekend!

LIVESTRONG and God Bless!

This is the true story (TRUE STORY) of 11 family members picked to live in a house and have their lives taped to find out what happens when people stop being polite and start getting real.  The Real World.  Beach Week!

Now that I’m on Facebook, this would be considered, I believe, a TBT – throw back Thursday – or a FBF – flashback Friday!  Yes, you’re reading correctly.  Barb Sciandra is on Facebook!  Never say never, right??!!  I have a total ulterior motive, though.  It’s called Paint Pittston Pink.  There is more on that – keep reading.

First, we were invited to the beach with Sal’s brother-in-law’s family again this year.  It was a great time.  The kids have instant friends on the beach since there are between 75 and 100 family members that attend.  The ages range from a few months old to over 60ish.  Everyone can find someone their age to play with.  And the 11 people in our house had much less drama than what’s seen on MTV’s, The Real World!  Except for when Audra found her laundry in the middle of the sunroom floor.  WTF?!!  I’d still love to know how Jameson or Chase did it!  That WASN’T. NOT. FUNNY!

Here are a few of my favorite pictures from the week:

Cameron loved the ocean.  She called it the pool all week!  And wasn’t afraid to run in as fast as she could!

Jameson needs less sleep than Chase.  If Chase doesn’t get a full 12 hours, he’s shot.  We kept Jameson out until 11 one night.  We put her in her PJs and took her for ice cream.  She LOVED it!  These are the kinds of things that kids remember…..I think!

Jameson couldn’t have ice cream without Chase keeping track of it.  So, the next day, I believe, Sal took Chase for a bike ride (in his PJs) and they stopped for ice cream on the way back!  Let’s go Irish!

These last 2 pics are my favorite.  Being at the beach reminds me of my Dad.  As Jameson was learning how to jump the waves and dive under them, it brought my mind back to the Jersey shore when I was her age.  My Dad used to take me out a little farther every time.   There is something very calming about being near the ocean.  I think I like the constant reminder of being surrounded my something mysterious and much, much bigger than me.

We also met up with the Darmstadters again.  The carnie games were a bust this year and Chase was over tired and freaked out on the Ferris Wheel!  Lee saved the day by hooking Chase up with a basketball – that he’s been bouncing non-stop day and night preparing for basketball camp next week.  Thanks, Dad!  Haha!  😉

I had a rough week leading up to our beach departure.  Dr. Penugonda dropped the bomb on me during Cam’s 2 year well visit.  Please keep in mind that Dr. Penugonda was my pediatrician growing up.  I love her and trust her more than anyone in the world.  She had a health issue and is thinking of retiring at the end of the year.  FYI:  I am a “normal crier” – weddings, funerals, graduations, movies, television commercials, etc.  Sal says that motherhood softened me!  Let’s just say that I cry even more now.  I thought Doc was going to have to give me smelling salts because I was on the verge of passing out!  I was bawling!  Maria, thanks for talking to me on my way home.  You’re the only other person who understands!  Imagine what an ass I looked like walking into the gym after this appointment.

• Gym staff:  Barb, what’s wrong?  Are you ok?
• Me:  Yes, I’m ok.  It’s just that……my kids’ pediatrician is retiring!!!  Whaaaaaahhhhh-Bah-ha-ha!

OMG!!  Crazy lady right here!!  Honestly, Dr. Penugonda is such a wonderful person and is a terrific pediatrician.  I don’t blame her for thinking about retiring.  She deserves to relax and enjoy her life, too.  If this does come to fruition, I am really going to miss her.

As a side note, Sal had a field day with this and continued to call me Ross Gellar for the rest of the week.  Look it up if you’re not a fan of Friends.

So, Netflix was ruining my life for a while.  Now that HIMYM is no longer on, here’s what I’ve watched:

• Girls (HBO series – you can bang out 2 seasons in less than a week – HBO on demand)
• House of Cards (Netflix series – again, you’ll bang out 2 seasons in a week or 2)
• Breaking Bad (this show was awesome!!  My sister nicknamed Cameron, Pinkman, because she’s pretty sure that Cameron is going to start calling everyone, BITCH!  Really, if you have the time or are bored at night, tune into this series.  There were 5 seasons, I believe – one better than the next.)
• Orange is the New Black (Netflix series – awesome!  You’ll watch both seasons in a week if you’re a binge watcher like me!)

Seriously, it was becoming a problem!  I was like a crack addict!  I was up until 2 or 3 in the morning watching “just one more episode”.  I have trouble sleeping to begin with and Netflix wasn’t making it any better!

Here are some updates on the kids:

CHASE:  Some funny things have been coming out of Chase’s mouth lately:  True story; that’s how we do it; lesson learned; and my all time favorite – remember, you’re a champion!  You all know where true story came from, but the other ones – I have no idea!  He’s a piece of work!  Chase also scored his first real black eye – from his big sister!  We have Sal to thank for this one, ladies and gentlemen!  Sal taught Chase how to punch properly which in turn led to Chase teaching Jameson how to punch properly which led to Jameson missing Chase’s hand and popping him in the eye!  I had to reschedule Chase’s 6th birthday pics!  Chase will be entering kindergarten in the fall.  We were worried that we made a mistake in having him do an extra year of preschool this past year but I think that Sal and I are realizing that it’s the best thing we ever did for Chase.

CAMERON:  Cameron has been wearing a vest around the pool like a pet who has just been spayed or neutered.  That kid is unbelievable.  She is non-stop.  I often think about my friend’s sister who has 4 kids (now older) and traveled all over the country by herself, usually, when the kids were small due to her husband’s job.  I have no idea how she did it.  I can barely manage 3 kids in one town with a husband whose job allows him to be present!  Cameron is a really special little girl.  She really and truly is.  She’s very well-behaved as long as she’s occupied 24/7.  She always has to be doing something – a true gal on the go!  We are working on getting a bed for Cameron being that she refuses to stay in her crib.  She’s totally over it and climbs out every chance that she gets.  Her bedroom window overlooks our deck and pool so we often find her knocking on her bedroom window, waving and yelling ME POOL as loud as she can!  Her favorite word right now is BOLDIE which we’re trying to stop her from saying!  She says it with her whole body – very Italian!  She throws her right arm and points to strangers at the grocery store – YOU, BOLDIE!

JAMESON:  Jameson is doing very well.  She is really coming into her own.  She has quite the opinion on her hair and attire.  She had her first art class and really loved it.  She loves to read and play the piano and her favorite movie right now is The Princess Bride.  At the moment, she wants to be an orthodontist when she grows up.  Jameson really and truly is the kindest and most thoughtful child that I’ve ever met and I’m not just saying it because she’s my daughter.  She amazes me every day.  I’m not sure how I lucked out.  I’m going to thank Sal for this one!

The days in our house are beyond crazy.  They are exhausting and sometimes very frustrating but I am thankful every day that I’m here, doing exactly this.  One day I know that I’ll wish that my kids were 7, 6 and 2 again.  I’m grateful for my health and I feel so very fortunate to be alive.  I feel as though my life has a purpose beyond what I realize it to be at this very moment and I’m doing my best to fulfill whatever that may be.  Paint Pittston Pink seems to be a step in the right direction.  At least that’s where I feel as though I’m being led.

So, I am on Facebook.  Welcome to the 90’s, Mr. Banks!  I’m on Facebook to promote Paint Pittston Pink – a 3 day community event to promote breast cancer awareness and to raise money for breast cancer research.  Please, look up the page on THE book!  Like it and Share it!  Apparently, it’s THE thing to do!  All I wanted to do was set up a page for Paint Pittston Pink.  I created my own page first because I am clueless.  I had no idea that I needed my own page to create an event page.  Nonetheless, it’s pretty cool connecting with people who I haven’t seen in a really long time.

Here is some info on Paint Pittston Pink:

• It’s a weekend long event that is sure to be a ton of fun!
• All proceeds will benefit Dr. Brian Czerniecki’s breast cancer research vaccine through the Pennies in Action Fund at The University of Pennsylvania.
• Friday, October 3, 2014:  Celebrity Bartending Night at The Red Mill on Main Street in Pittston from 7pm-9pm
• Saturday, October 4, 2014:  5K Race where we’ll throw pink cornstarch at you while you run followed immediately by The Caped CURE-Sader Family Fun Walk (kids 10 and under will receive a Pittston CURE-Sader cape)
• Sunday, October 5, 2014:  Silent auction, beer and wine tasting event at Arts on Main and Callahan’s on Main in Pittston sponsored by the Susquehanna Brewing Company and Bartolai Winery

We have 2 fundraisers underway right now.  We are selling t-shirts and flags.  The t-shirts are $15 for sizes YS to 3X.  Checks can be made out to, Paint Pittston Pink, and can be sent to 70 Pinewood Drive in Laflin, PA 18702.  The ordering deadline for shirts is August 5.  Flags are $150 and will line Main Street in Pittston for the month of October.  Checks can be made payable to, The Pittston Downtown Improvement District, and can be sent to 70 Pinewood Drive in Laflin, PA 18702.  We can sell a maximum of 100 flags and I know that these will sell quickly.  The Pittston Downtown Improvement District is a registered 5013c so you can use this purchase as a charitable tax write off.  Take advantage of this opportunity to support this worthwhile cause!

No names will appear on the flags, but Paint Pittston Pink plans on running a full-page ad in our local paper, The Sunday Dispatch, with the names of those who have purchased flags.  You are welcome to purchase the flags in honor of someone, in memory of someone, etc.  All of that information will be listed on our ad in The Dispatch.  I am also working on another way to commemorate the first of what will hopefully be many Paint Pittston Pinks in the city!  Stay tuned!

So, if you choose to purchase a flag, I need your name, how you would like your name to appear in the paper, if you are making a donation in honor of or in memory of someone and your check for $150 made payable to The Pittston Downtown Improvement District.

I need to thank Qiana Murphy Lehman who has been my right hand lady through all of this planning.  Qiana has been awesome.  I’m not sure if I should call her The Don or Tom Hagen!  I think that what all of you are witnessing right now is the start of our own 5013c.  Qiana has applied for an EIN# which will make Paint Pittston Pink a non-profit.  We will most likely be filing as a charitable non-profit next if these events are a success so we can continue knocking it out of the park year after year.  Thanks, Qiana.  I couldn’t have done this without you.  You’re the best!

I also need to once again thank Liberty Tax – Mark and Jeanna Mihalka, Joe and Amy Mihalka and Bob and Christy Savakinas.  Because of you and the events that you held last year, I have enough money saved to get the ball rolling with these events.  It takes money to make money.  Thanks for being awesome.

I do have to vent about something Facebook related right now.  Mean people suck!  In less than a month, Paint Pittston Pink has gotten almost 900 likes which I’m told is pretty damn good.  Out of those 900 people, I’ve only received negative comments from 2 people who I can’t help but take to heart.  Someone wrote that this is a corporate slam and to save your money.  He also said that cancer loves and thanks us.  Nice.  It’s a crappy feeling when someone you don’t even know is questioning your integrity.  I don’t know this jackass personally, but his FB page shows his business name which, ironically, I’ve utilized.  I am very supportive of freedom of speech but I do not appreciate ignorance.  Think before you speak and be educated before making hurtful remarks.  This asshole doesn’t know what the hell he’s talking about.  Oh, and YOUR means something that you own and YOU’RE means you are.  THERE is a place and THEY’RE means they are.

I hate the word, boobies.  I also hate the words, tits, milkers, tatas, etc.  They’re derogatory and I find them to be very offensive.  Save the tatas is the most ridiculous campaign that’s ever existed.  How about don’t save the tatas??  How about cut the tatas off??  Breast cancer isn’t cute and it’s not funny.  This is a disease that 1 in 8 women will be diagnosed with.  I’m all about having a sense of humor but try to be a little more sensitive.

Thank you!  I feel better now!

I had my first booster shot last Friday.  We took Jameson and Chase (and my sister, Ann, who was nice enough to spend 2 weeks with us.  Some vacation, Ann!  Nice and relaxing, right?!!  You need a vacation from the vacation!) with us.  I hate that cancer is a normal thing to these kids.  But, what are we supposed to do?  Hide it from them?  I know for a fact that when you do stuff like that or try to shelter your kids from real life stuff, it will come back to bite you.  It’s not pretty.

The restaurant on South Street had their menu on Viewfinders!  Talk about TBT or FBF!

Anyway, Dr. Czerniecki is so excited that we’re raising funds for him.  Vaccines are in the works for ovarian and esophageal cancer utilizing the same concept.  HER2 cells are also present in these types of cancer and the research results have been very promising.  Keep your fingers crossed.

Speaking of sheltering the kids….Jameson and Chase attended their second funeral ever two weeks ago.  I don’t think that they’re too young to experience this.  Death is a part of life.  They attended their first funeral last year at exactly the same time.  They have a lot of questions that we answer the best way that we can.  I heard something pretty smart.  The funeral director said that kids are like a chalkboard.  They start off with a clean slate and aren’t marked with anything until we choose to imprint on them.  We project our fears onto them.  Sal and I try really hard not to do that.  As a morbid side note, I can’t help but worrying that I’m preparing my kids for my own funeral someday.  Well, I actually hope that I am.  I hope I die before my kids.  But I hope that it isn’t for at least 60 years from now.

To end tonight, because now I’m starting to ramble, I encourage you once again to support cancer research.  Know where your money is going.  There are websites available that allow you to see if the CEO draws a salary, what the non-profits net income is, etc.  Not only were these facets important to me, but I also wanted to support an organization that was working to eradicate the disease and wasn’t just treating the patient.  Do your own research, though.

LIVESTRONG and God Bless!

……and please like and share Paint Pittston Pink on Facebook!

We’ve had a busy couple of days.  Cameron turned 2 on May 29.  I can’t believe it.  I have no idea where the time has gone.  The past two years are such a blur – I am so thankful for pictures.  We celebrated Cam’s birthday with a party at our house on Memorial Day.  We couldn’t have asked for a nicer day.  The weather was beautiful and the kids had a ball.  And we didn’t hit our gas line this time!

Chase graduated from Pre School on Friday morning.  Again, I can’t believe that he will be starting kindergarten next year.  Time really does fly!  Below is a picture of Chase with his teachers – Mrs. Miller, Mrs. Loftus, Mrs. Simkulak and Mrs. Lee.

I’m not a big fan of public speaking.  I dislike it almost as much as I dislike running without a purpose!  I usually do ok as long as I have a paper to read from.  However, I was a blubbering idiot yesterday.  I honestly don’t know what came over me.  Keep in mind that I’m normally a pretty emotional person – I cry during movies, graduations, weddings, television commercials, after I read the newspaper, etc.  It’s ridonk.  And now, I don’t even have hormones to blame.  Anyway, I was asked to speak at the Greater Pittston YMCA’s Healthy Family Day to talk a little bit about how the YMCA has helped me post cancer diagnosis and treatment.  The beginning part is much of what you’ve heard 500x.  How many different ways can you spin a cancer diagnosis and treatment?!  I’m not sure how I made it through the entire Relay for Life talk without shedding a tear – especially when I talked about my husband and my kids – but I fell apart during this one.  What the hell is wrong with me?!!

Thank you, Mr. Sowinski, and thank you, Mary Ann, for inviting me to be here today. It is an honor and privilege for me to speak to all of you.

Before I share with you how the Greater Pittston YMCA has impacted my life, I need to tell you a little bit about myself. As Mary Ann stated, my name is Barb Sciandra. I am a 35 year old wife and mother, most importantly. I am a sister, daughter, niece, friend and neighbor. Looking at me today, thankfully, you would have no idea what the last 2 years of my life have been like – that I started chemotherapy treatments one day after my eighth wedding anniversary, during the same week that my oldest child started kindergarten and my middle child started preschool.

I felt a lump in my left breast at the beginning of my last pregnancy but it was not seen on an ultrasound and therefore, went undiagnosed throughout my pregnancy. I had a difficult time breastfeeding Cameron, my youngest of three children, and I knew that something was not right. After being very persistent and undergoing many ultrasounds, biopsies, mammograms and MRIs, I heard the 3 words that no one wants to hear. YOU HAVE CANCER. A light was finally shed on the issue that had presented itself nine months earlier. I was diagnosed with bilateral breast cancer on August 17, 2012 at the age of 34 – just 3 months after the birth of our third baby and two weeks before I was scheduled to return to work as a retail pharmacist after my maternity leave.

My left breast was diagnosed as Stage III locally advanced cancer and my right breast was diagnosed as Stage II cancer. I was as aggressive as possible when it came to treatment because I want to live a full life. I have too much to live for. I had a port surgically placed less than a week after my diagnosis and started chemotherapy treatments to shrink the cancer on my left side. After 5 months of chemo, I underwent a double mastectomy with immediate reconstruction. I had an oophorectmy a month later, not because I am BRCA+ – I am actually negative – but another type of genetic blood test indicated that my body might not be able to metabolize the drug, Tamoxifen, which is the standard of care after chemo for the type of cancer that I had, to its active form. Next, I underwent radiation treatment for 6 weeks as well as a year’s worth of Herceptin. Herceptin is an infused drug that is used to treat HER2+ breast cancer – part of which my cancer was. I currently take an oral medication called Femara because I am considered post menopausal.  I was fortunate to qualify for a vaccine clinical trial at the University of Pennsylvania which will conclude in January 2015.

I’m a big believer in the YMCA and the programs that are offered and I have been since I was a child. I attended pre-school at the YMCA in Wilkes-Barre where my family lived at the time. I can remember having and attending many, many birthday parties at the Y. The YMCA enhanced my love of swimming and being active and it has done the same thing for my own children.

The Greater Pittston YMCA has played a very important role in my overall healing process post cancer diagnosis and treatment. Because I am now considered post menopausal at the age of 35, I am at an increased risk of osteoporosis as well as an adverse cardiac event. So, exercise and healthy living are even more important to me now than they were previously. Two employees of the Greater Pittston YMCA, Brandon Whipple and Sally Dietrick, have helped me to change my life.

Because of the type of the surgery that I underwent in February 2013, I felt as though the range of motion on my left side was somewhat limited. I also have numbness on both my left and right side due to nerve damage caused during surgery which is typical after the type of procedure that I had. I am happy and proud to say that my range of motion has increased tremendously and I am regaining feeling where it was lost. I attribute this success to weight training with Brandon Whipple.  Brandon is a positive person and is truly an asset to the YMCA organization. Because of Brandon’s assistance, I am getting stronger every day. I feel better than I have in years. I believe that Brandon and I get along so well because we both feel that what the mind believes, the body achieves. Exercising with Brandon reminds me of a poem that my brother-in-law was kind enough to share with me shortly after I was diagnosed with cancer. I’ve read it many, many times since then. The poem is by Walter D. Wintle and it’s entitled, “Thinking.”

If you think you are beaten, you are

If you think you dare not, you don’t,

If you like to win, but you think you can’t

It is almost certain you won’t.

If you think you’ll lose, you’re lost

For out of the world we find,

Success begins with a fellow’s will

It’s all in the state of mind.

If you think you are outclassed, you are

You’ve got to think high to rise,

You’ve got to be sure of yourself before

You can ever win a prize.

Life’s battles don’t always go

To the stronger or faster man,

But soon or late the man who wins

Is the man WHO THINKS HE CAN!

Brandon pushes me harder than I can push myself and he helps me to recognize my full potential. We both believe that you get what you give and on the days that I meet with Brandon, we both give 110%.

If it wasn’t for Sally Dietrick, I would not be able to exercise as much as I do. Sally is one of the kindest, most patient women that I have ever had the pleasure of knowing. She is wonderful with the kids. In fact, my two year old daughter, Cameron, won’t stay with anyone else in the childcare center! Many days, Sally is left alone with ten or more little ones. Her job at the YMCA is not easy yet she makes it looks like a piece of cake and takes care of the children as if they were her very own.

As you can see, the family friendly YMCA has a lot more to offer than just a basketball court. Life changing events take place within these walls. I can attest to that. I’m certain that there are many more individuals that have similar stories to tell about how the YMCA has impacted their lives in a positive way.

In closing, I would like to encourage you to donate generously to the YMCA. Your donation can possibly help someone that is unable to help themselves. Please also consider donating to cancer research for it is only through research that we continually inch our way towards a cure for this terrible disease.

Thank you for your time and enjoy this beautiful day!

I’m not a big fan of “Save the Dates,” but I need to make all of you aware of some pretty exciting stuff that I have lined up.  Please, mark your calendars for October 3 and October 4.  We’ll be hosting the First Annual Paint Pittston Pink Weekend to support the Pennies in Action Fund at the University of Pennsylvania.  Here are some details:

1.  Our campaign will start by selling flags that will line Main Street in Pittston.  There are 2 different breast cancer awareness flags – one with many pink ribbons and the other has only one pink  ribbon with the wording, “Pittston supports a cure!”  They’ll line Main Street by single ribbon flag, many ribbon flag, single ribbon flag, many ribbon flag, etc.  I’ll have the cost and the samples to post shortly.  They will be lining Main Street for the entire month of October thanks to the wonderful city of Pittston.

2.  On October 3, there will be a celebrity bartending Happy Hour at The Red Mill in Pittston.  Details to follow!  Get psyched!

3.  On October 4, there will be a 5K followed by The Pink Caped CURE-Casders Family Fun Walk.  Sounds fun, right?  It will be!  Details to follow.

Everything is in the preliminary phase right now and I’ll definitely be reaching out to more people for help shortly.  Thanks so much to Qiana, Brandi, Sara, Rose, Rose and Jay who have gotten on board so far.  Thanks also to former Mayor Mike and Councilman Mike who said yes without hesitation.  I appreciate it greatly.  My fundraising goal for these events is $50,000.  I know that it might be dreaming big, but I hope to well exceed it.  I’m working on setting up a website for online race registration as well as the acceptance of donations.

Many of you have asked how to help.  This is how!  Please try to attend and if you can’t attend, make a donation if you are able to do so – big or small.  Tell your friends.  All proceeds raised from these events will be going directly to Dr. Brian Czerniecki and the Pennies in Action Fund at the University of Pennsylvania.  I have benefitted directly from the help of this physician and this organization.  That will be my next post – all about Pennies in Action and the vaccine that I am so extremely fortunate to be receiving.  For now, take a look at the video that I was asked to be a part of.  You’ll get an idea about how important this research really is and the breakthrough that is being seen.

 https://www.sendspace.com/pro/dl/nlis8e

I need to give a HUGE shout out and thank you to Tyler Loftus who raised $400 by selling pink shoelaces to his hockey team.  How awesome is that???  Tyler is the son of one of Chase’s pre-school teachers.  I had the chance to meet him last week and he is such a doll – just like his Mom.  I asked Mrs. Loftus if I would be able to fix Tyler up with my sister (sorry, Ann, but he’s a cutie!) but she said that would make Ann a cougar!  I said that Ann lives in California so that’s perfectly acceptable!  Anyway, Tyler is only 20 but he has the heart of a 90 year old.  He is such a nice, kind young man.  I’m so happy to see young adults who want to help.  It inspires me.

That’s all I’ve got for right now.  Enjoy what’s left of your weekend and stay tuned!

LIVESTRONG and God Bless!

What is Relay for Life? It’s an event that benefits the American Cancer Society.  You celebrate, remember and fight back.  According to the website,

“At Relay For Life events, communities across the globe come together to honor cancer survivors, remember loved ones lost, and fight back against a disease that has already taken too much. The funds you raise truly make a difference in the fight against cancer – just ask one of the nearly 14 million cancer survivors who will celebrate another birthday this year!  Relay For Life teams camp out overnight and take turns walking or running around a track or path at a local high school, park, or fairground. Events are up to 24 hours long, and because cancer never sleeps, each team is asked to have at least one participant on the track at all times. ”

Cool concept, right?  I was asked to speak on behalf of cancer survivors on Saturday night at Pittston Area High School’s Relay for Life.  The high school students really did a great job and it seemed like they were having a lot of fun, too.  We weren’t able to stay for the Luminaria Ceremony but I’ve been told that it’s a really moving and lovely event.

I got to thinking.  Each one of us should try to attend as many community events/fundraisers as possible regardless of whether or not our hearts are really into them.  That’s just my opinion, though.  You don’t need to monetarily support the events – just give a couple of bucks and go have some fun.  So much time and energy goes into the planning and I’m quite certain that it means so much to the people organizing them when you actually show support.

As far as funding, I’m super careful about what organizations I donate whole heartedly to anymore.  Pennies in Action is my place right now because the organization works hand-in-hand with one doctor and a team of researchers who are working on something very specific.  Plus, I personally benefitted from this organization.  I received some good news on Friday evening from Dr. Czerniecki, himself.  The vaccine is working!  6 peptides are checked for an immune response.  The most important peptide, CD4, where my level started off at zero – literally, I had no antibodies – has skyrocketed!  My body will no longer serve as a petri dish for cancer!

Below is my talk from Saturday night.  I’m realizing that I’m running out of ways to get creative with telling this story!  If I made an impact on one student to continue giving back or one person newly diagnosed to not be afraid then it was worth it.  Thanks again Bob, Lizzie, Madeline and Mrs. Bauman.  Nice seeing you, Becca!

Thank you for the introduction, Lizzie. I’d also like to thank Madeline Moss for inviting me to be here tonight. It is an honor and privilege for me to be back at my alma mater. I have to admit – while I was a student at Pittston Area Senior High School, I used to dream about coming back as a commencement speaker. Never in a million years did I think that I’d be standing before you, instead, as a 35 year old breast cancer survivor!

Before I share my story, I’d like to thank the faculty, staff and students of Pittston Area High School for doing your part to aid in the war on cancer. Often times I find myself wondering if one person can truly make a difference. I hope that each one of you, especially the students, can see that one person can make a difference. I’ve been told that this particular Relay for Life – here at Pittston Area – started as one person’s idea and look at where you are today. You should be so proud of yourselves for all that you’ve accomplished through hard work and dedication. Pittston Area’s Relay for Life Group has been nationally recognized and that falls nothing short of amazing.

As Lizzie stated, my name is Barb Sciandra. I am a 35 year old wife and mother, most importantly. I am a sister, daughter, niece, friend and neighbor. Looking at me today, thankfully, you would have no idea what the last 2 years of my life have been like – that I started chemotherapy treatments one day after my eighth wedding anniversary, during the same week that my oldest child started kindergarten and my middle child started preschool.

I felt a lump in my left breast at the beginning of my last pregnancy but it was not seen via ultrasound and therefore, went undiagnosed throughout my pregnancy. I had a difficult time breastfeeding Cameron, my youngest of three children, and I knew that something was not right. After being very persistent and undergoing many ultrasounds, biopsies, mammograms and MRIs, I heard the 3 words that no one wants to hear. YOU HAVE CANCER. A light was finally shed on the issue that had presented itself nine months earlier. I was diagnosed with bilateral breast cancer on August 17, 2012 at the age of 34 just 3 months after the birth of our third baby and two weeks before I was scheduled to return to work as a retail pharmacist after my maternity leave.

My left breast was diagnosed as Stage III locally advanced cancer and my right breast was diagnosed as Stage II cancer.  I was as aggressive as possible when it came to treatment because I want to live a full life. I have too much to live for. I had a port surgically placed less than a week after my diagnosis and started chemotherapy treatments to shrink the cancer on my left side. After 5 months of chemo, I underwent a double mastectomy with immediate reconstruction. I had an oophorectmy a month later, not because I am BRCA+ – I am actually negative – but another type of genetic blood test indicated that my body might not be able to metabolize the drug, Tamoxifen, which is the standard of care after chemo for the type of cancer that I had, to its active form. Next, I underwent radiation treatment for 6 weeks as well as a year’s worth of Herceptin. Herceptin is an infused drug that is used to treat HER2+ breast cancer – part of which my cancer was. I currently take an oral medication called Femara because I am considered post menopausal.

I was fortunate to qualify for a vaccine clinical trial at the University of Pennsylvania which will conclude in January 2015. This vaccine trial is run by Dr. Brian Czerniecki and his team of researchers and is sponsored by the Pennies in Action Fund at Penn. Dr. Czerniecki’s vaccine results have been extremely promising in preventing breast cancer recurrence so it is imperative that his clinical research efforts are kept moving forward. I feel as though this vaccine is giving me a second chance at life. I perceive this clinical trial to be something that will, hopefully, aid in affording me many, many more years spent with my husband of ten years, Sal, and my three children – a seven year old daughter named Jameson, a six year old son named Chase and a two year old daughter named Cameron.

We live in a wonderful community here, in the Greater Pittston Area. I felt the outpouring of love and support from my family, my friends and strangers who have since become friends since the time of my diagnosis almost 2 years ago. It is because of the overwhelming kindness of those in this community that have made my journey tolerable. My husband, my three children, my family, both immediate and extended, and my group of friends who are like family will never know just how much I love and appreciate them. If it takes a village to raise a child then it takes an army to beat cancer. I appreciate, so much, the many, many people who are a part of my army.

I need to thank 4 of my caregivers, in particular, who I am blessed to have with me here tonight. My husband, Sal, came to every single appointment with me, allowed me to cry when I needed to and still made me feel pretty in my darkest of hours. He took his marriage vows of “in sickness and in health” very seriously and I honestly don’t know how he’s done all that he has. Sal is my hero and my best friend.

You might be wondering how 3 little children can serve as caregivers – especially because they were 5, 4 and 3 months old at the time of my diagnosis. Jameson, Chase and Cameron are my reason for living, fighting and believing every single day of my life. They were my motivation to get up and get moving every morning. I never, ever felt sorry for myself because I knew that I was fighting to live for these 3 kids and that’s a lot bigger than me. I hope that someday all 3 of my children will be fortunate enough to experience the abundance of love that parents carry for their kids and the joy that children bring to their parents lives.

For some reason, part of my life’s mission has become sharing my story with others. I’ve blogged about my journey from the very beginning which I hope will someday serve as a useful tool for my children. Because of what I know today, I highly encourage each and every one of you to know your bodies – go for routine check-ups and take charge of your health. Be your own advocate! Women, please schedule your mammograms and be diligent in doing monthly self checks. Encourage other women in your life to do the same. If you feel as though something doesn’t feel quite right, be persistent. Keep using your voice until someone will listen to you.

I stress to physicians and those involved in patient care to please take the time to really listen to what your patients have to say. Allow your patients to explain themselves. Be attentive. Take your time when performing an examination or a procedure; follow-up with your patients. Do not dismiss any patient based upon age or pregnancy status or whatever the case may be. Your patients are entrusting their lives to you. It has been said that with great power comes great responsibility. Take this motto seriously every day as you practice your profession, whatever that may be.

To the students who are here tonight, one by one, you are making a difference. Please continue to do so. To the recently diagnosed, pay no attention to statistics. Statistics are just numbers and you are not a number. Never, ever give up hope or your will to live. To the survivors, keep up the fight and be proud of what you’ve overcome. Don’t forget the journey that you, yourself, have been on and look to help those around you who are suffering. Remember that you, too, once filled those shoes.

In closing, I would like to encourage you to donate generously to cancer research. It is through funding that we continuously inch our way towards a cure for this terrible disease. Thank you for your time and allowing me to speak to you tonight. Have a wonderful evening.

LIVESTRONG and God Bless!

“When you are a mother, you are never really alone in your thoughts.  A mother always has to think twice, once for herself and once for her child.”  – Sophia Loren

Happy Mother’s Day to all of the mothers, grandmothers, godmothers, sisters, aunts and those who are like mothers.  I hope that each one of you has a very special day tomorrow.  I’ve seen the following video quite a few times.  It’s awesome if you haven’t already seen it.  Take a look.

http://www.youtube.com/watch?v=HB3xM93rXbY

And lastly, some advice for my three children from one of my favorite HIMYM actors.  I love you, Jameson, Chase and Cameron.  Keep up the good work.  Thanks for making me a mom!  I’m proud of each one of you.

“My mother taught me to be nice to everybody.  And she said something before I left home.  She said, ‘I want you to always remember that the person you are in this world is a reflection of the job I did as a mother.'”  – Jason Segel

LIVESTRONG and God Bless!

Hey Everyone!  Did the Grateful Dead nail it, or what?!!  Well, they were talking about a different sort of trip, but still!  I hope that this blog entry finds all of you doing well.  I apologize for the length of this one, but it’s been a while.  Thank you, Nick Grochal, for backing up all of my information.  I apologize for the radio silence.  To be honest, I needed a bit of a break.  To be completely honest, I woke up really angry one day back in October and needed to shut it down for a bit.  I didn’t want to write something that I would regret.  One thing I’ve learned over the past few months is that knowledge is power, but ignorance is bliss!  Anyway, I thought about keeping this blog offline but I realized a few things:

1.  This blog has been very helpful to me in my healing process.  Writing makes me feel very free.  You get a lot off of your chest – ha!  and I don’t even have one!  Really, if you ever feel stressed, try writing everything down on a piece of paper and then burning it with a match once you’re finished.  That’s some advice from a very dear friend of mine.  It actually works.

2.  I think that this blog has been helpful to others, as well.  I’m not quite sure why or how, but I feel as though I’ve connected with people.

3.  I sensed that some people have been walking on eggshells around me wondering if I’m alright, wondering if am I undergoing treatment again.  Most people, I do believe, are generally concerned about my family’s well-being and are not being nosey.  This is my main reason for writing again.  I never, ever want anyone to feel uncomfortable around me or my family so I will, once again, give you a glimpse into our lives.

So, what’s been going on?  A LOT!!!

First of all, what is with the type of junk e-mail that I receive?!  What kind of websites am I visiting that I’m receiving messages entitled, Dirty Blonde MILF, Cougar Dating, and Sex Kitten?!!  You know what?  Forget about this.  Sal is an IT guy.  I’m sure I’m doing something that I’m not supposed to!

Alright, let’s rewind a little bit and I’ll take you through month-by-month what’s been happening in our lives:

OCTOBER

I wanted to share a picture of the 3 kids dressed in their Halloween costumes.  As you can see, we went with a Star Wars theme this year.  Jameson (6) was Princess Padme, Chase (5) was Chewbacca and Cameron (17 months) was Yoda.  I’m taking advantage of dressing the likes alike for as long as I can!  The run is coming to a sad end with Jameson and Chase.

The beautiful change of seasons and the turning of the leaves in NEPA always brings with it a whole lot of craziness.  By craziness I mean that I visited the pediatrician’s office once or twice a week for some sort of sickness!  Literally, I’m on a high-five basis with the nurses and the receptionists call me by name because they recognize my voice when I call.  I’m close to having a secret handshake with Dr. Penugonda, too!  With 3 kids, 2 of whom are school age, someone is always sick in the fall/winter months.  It begins with Chase who usually remains sick until the holidays are over.  I’m not exaggerating.

This year was the first time I was a complete maniac when it came to the kids.  And I mean bat shit crazy – like panicking in the ER and calling our pediatrician on her personal cell phone – which I later found out she only turns on to speak with her out-of-town daughters or to call India.  I almost drove to her house – which I’ve been to as a child – because I wasn’t happy in the ER!  Yes, I was nuts.  Anyway, Cameron ended up with an infection and was put on Amoxicillin – which she had once before.  No biggie.  This was her second antibiotic ever.  What could go wrong, right?  After 8 days worth of treatment, she ended up with hives that started off very mild and got worse and worse and worse.  If your child looked like this, you’d be flipping out, too!

THIS IS CAMERON.

 THIS IS CAMERON ON AMOXICILLIN.  

ANY QUESTIONS?!!

Trust me.  I wasn’t a negligent mom!  I had Cam seen on Friday by the on-call doctor when I noticed a few tiny hives, I paged a doctor on Saturday because her hand looked a little puffy and then I woke up to the above on Sunday morning which prompted me to grab Sal to rush Cameron to the ER.  Oye ve!  So, that was our October!  As a side note, the sickness with the kids lasted until after the New Year.  It’s ok, though.  We’re just building their immunity!  And, Cameron is more than fine.  She’s awesome!  After one dose of prednisolone, she was rockin’ the party again!

NOVEMBER

November started with a plastic surgery procedure combined with the removal of my port.  Whoo-hoo!  I was so happy to get rid of the robot part but I’m left with a huge scar to prove that it was there.

November also brought about my last Herceptin treatment.  I was lucky to be accompanied by Thomas Lee, the student who raised $1000 for the Medical Oncology Prescription Assistance Fund, as well as his mom, Mrs. Lee, who is the kids’ school principal.  Sal was also there, but that’s a no-brainer!  I have to tell you, every time I think about Thomas I just want to yell, TIMBER!

“It’s going down.  I’m yelling TIMBER!  You better move.  You better dance….”

Anyway, Thomas is the sweetest boy.  He drove with Sal and me to treatment.  After a hot chocolate and a donut to break the ice – don’t forget, Thomas is a fifth grader who was most likely pretty nervous coming to an oncologist’s office to watch an adult get hooked up to a machine – Sal asked Thomas about his favorite sports, his favorite subjects, what kind of music he likes, etc.  Sal is better at small talk than I am.  Thomas’ response for music was the following:  “Pitbull – he’s a classy rapper – and church music.”  I love Thomas!  I don’t know why but I got such a kick out of this.  Thomas is such a good, brave young man.

As always, the staff at MOA was so wonderful to Thomas and Mrs. Lee.  Nurse Lisa, whose daughter attends the same school as my kids and who administered my very first chemo, was my nurse for the last treatment.  I really came full circle.  Lisa rocks!  Lisa gave Thomas and Mrs. Lee a tour of the facility and explained everything to them.  The staff at MOA encompasses all very compassionate and extremely helpful people.  Unfortunately, Dr. Saidman was not in the office so Thomas will be meeting Doc in a few weeks for some pictures.  On my last day, all of the nurses wore pink and to say that I was emotional upon completion would be an understatement.  However, as much as I miss seeing everyone in the office – they really became friends to us – I’d rather see them out at a social gathering than to be chatting with them while being hooked up to a machine in the treatment area.

DECEMBER

December was an exciting month for a lot of reasons.  Anyone who knows me well knows that the Christmas season is my favorite time of year.  There’s something about the weather, the music and the decorations that warms my heart.    We were lucky to have my sister staying with us for the holidays which was just a blast.  A few stories from December:

Anyone with young kids probably has an Elf on the Shelf.  Talk about a genius, money-making idea!  Our elf’s name is Cloudy.  Give me a break – Jameson named it when she was about 3.  That God damn elf!  Do you know that I had to set a reminder on my phone to move the Fing thing before I went to sleep every night?!  Here’s the deal with the elf – it comes with a book so the kids know the rules – the elf is in your house to keep an eye on your behavior; it travels back to the North Pole every night to report to Santa directly; you can talk to it but it can’t talk back to you; if you touch it, the elf loses its magic and won’t fly.  So, since it flies every night it has to be in a different spot every morning and the kids find it when they wake up.  I was happy to put the Elf away for the season!  I did, however, use the threat of the elf on Chase to straighten out his behavior.  Long story short, but Chase was using the word, penis, in excess around the holidays!

Something really cute that Sal noticed was Jameson going to bed every night with a long, white button down sweater on and her slippers right next to her bed.  She wanted to be ready in case the Polar Express came for her.  How adorable is that?  Truly.  And that’s what makes the holidays magical.

We try to make it into New York City a few times a year, especially during the Christmas season.  We made it in with a bunch of our friends to see the Christmas show this year.  As always, it was a lot of fun.  I laughed when I uploaded the 2nd picture.  Ethan looks so much like a ninja that you can hardly even tell that he’s there!

We’re also fortunate to be invited over to our friend’s home every year for a Christmas gathering.  The real Santa always pays a visit.

Cameron really digs Santa – Part 2!

I started seeing a new OB-GYN in December.  It was the most thorough OB exam that I’ve ever had.  I had to have a repeat pap for the first time ever, I believe.  Receiving that phone call was a little nerve-wracking although the nurse assured me over the phone that all looked normal but the doctor just wanted to be sure.  He didn’t collect enough cells the first time to have the most accurate results.  Apparently this happens often in post-menopausal women.  Lucky us!

December 23 was a jam-packed day that went from one extreme to the next!  There were happy tears and sad tears!  So, let’s begin with Cameron.  I started to realize that I’m in an abusive relationship with my almost two year old little girl!  I find myself making excuses for her and saying things like, “She hits me because she loves me!”  Cameron, who was very appropriately nicknamed Camikaze by my mother-in-law because she is so nuts, is put to bed every night in onesie footed pajamas turned backwards.  Cameron likes to undress herself (diaper, too) as well as catapult out of the crib.  Anyway, on the morning of December 23, we made it downstairs in the morning before I could get her changed into regular clothes (which I do every single OTHER day) and Cameron face planted on our tile floor.  She chipped her 2 front teeth – her right front tooth down to the pulp.  To make a long story short, Cameron went in for a root canal on December 27.  She’s fine and her bonded 2 front teeth look perfect.  But, I was a mess.  I can handle blood, guts, surgery after surgery for myself, but if I see it happen to someone else, I pass out.  I braced myself as I picked her up and almost fell over when I noticed her chipped teeth.  Yes, that’s me crying as Cameron bites my face – because she loves me! – with Chase acting as a Jedi.  It’s ok to laugh!!  Sal wanted to capture this ridiculous moment!

Happy tears:  my sister arrived around lunch time on the 23rd and I received an e-mail from Dr. Czerniecki, himself, that I would be accepted into his HER2+ vaccine clinical trial pending future testing.  I’ll have an entire post about the process and the organization that I will be working to raise money for within the next few days.

I’m not sure what I was throwing away around the holidays, but Sal asked me about it.  I explained to him that I place sentimental value on very little.  I have a few pictures and a few keepsake type items that I hold dear, but that’s about it.  I feel as though all of the “stuff” that I own can be replaced.  My health, my family’s health, my husband and my kids are irreplaceable to me.  Everything else can get thrown out – and I really mean that.  Of course, some things I’d be a little upset about losing but I’d get over it.

Over the holidays, I recall being called a “miracle” by quite a few people.  My Christmas was pretty special this year.

JANUARY

On January 6, I had a CAT scan of my chest to follow-up on a spot that was seen on my lung way back in July.  Three doctors didn’t think that it was anything to be concerned about and, thankfully, it wasn’t.  Everything in my chest looked great!  Yeah baby!

I think January was pretty uneventful.  I did notice something a little weird while I was driving one day.  I drove past a woman who was sobbing in her car – literally weeping.  It struck me and will stick with me.  I don’t know who she was and we never made eye contact but it deeply affected me.  You just never know what someone else is going through and I try to keep that in the back of my mind always, especially when I’m close to losing my patience or about to say something that is unkind.

I did start back to the gym in January and I try to go twice a week now to get my strength back up, especially in my left arm.  From a therapists perspective my range of motion is fine but it’s not where it once was.   I go to our local YMCA and lift weights and use the elliptical machine.  I’m sorry but I just hate running.  I thought that I would sneak a 5K in at some point but I find it to be boring and torturous at the same time.  I opted out of the THRIVE program although our local Y does offer it.  I felt as though I was beyond the help that THRIVE offers although I do support the program 110%.  I would have been required to see a dietician and to also meet with a group of other women who were enrolled in the program.  This probably sounds pretty crappy, but I don’t have the time to commit to something like this.  I’m not big on group therapy – I don’t feel as though it would benefit me – and I’ve already met with wonderful dieticians as Penn.

FEBRUARY

I’m not going to lie.  February was a complete nightmare!  I was an emotional wreck trying to qualify for the clinical trial.  I had to have a CAT scan of the abdomen as well as two ECHOs.  The CAT scan of my chest from January was able to be used as part of meeting the inclusion criteria.  The ECHO came back with results stating that my ejection fraction had dropped to borderline normal.  This asymptomatic heart failure is a side effect of the type of chemo that I had as well as the Herceptin treatments and radiation therapy.  This just about pushed me over the edge.  I was walking a fine line between sanity and insanity at this point.  I had to have a repeat ECHO on the same day as the abdominal CT with contrast.  This made me want to throw up.  Oh, in fact, I did!  I made it to the bottom of the huge drink that I needed to gulp down for my abdominal CT and excused myself into the ladies’ room where I stood over the toilet in my hospital gown and barfed.  Sweet!

I cried all day at Penn worrying about the results of the CAT scan and the ECHO.  I felt like I had just gotten diagnosed with cancer again.  Being a part of the clinical trial was/is THAT important to me.  Now what?  The CAT scan looked good, thank goodness, and I was put in touch with an outstanding cardiologist who specializes in chemotherapy related heart failure.  This sounds worse than it really is.  I’m not in heart failure, per say.  I could live with the EF the way that it currently is, although the physicians “worry” because the vaccine works to increase immunity to HER2.  HER2 cells are also found on one’s heart which is why Herceptin can cause heart failure.  Make sense?  Anyway, long story short, I was started on a drug called Coreg and I now take that twice a day.

Luckily, I was accepted into the trial.  This is just a HUGE deal.  I’ll write more about this later, but basically here’s how it works:

Dr. Czerniecki checked my immune response to HER2 which was very low.  He said at one time, I could have had a normal response to HER2 but after my body fought and fought and fought the cancer, it wore my body out making my HER2 response next to nothing.  His vaccine works to increase the body’s immune response to HER2 so if cancer were to ever rear its ugly head again, my body would attack it before it got out of control.

I have a procedure inserting a catheter in my jugular just for the day.  Then, I’m hooked up to an apheresis machine for a few hours.  This process extracts my white blood cells which are used to manufacture a vaccine specifically for me.  I travel to Penn every Friday for 6 weeks and receive the vaccine.  After a few more weeks, another cath and apheresis to manufacture 3 more vaccines that I’ll receive in July, October and December.  My bloodwork will be monitored for years to check my HER2 immunity.  If my immunity every starts to decrease again, my doctor can petition the NIH to have me receive more vaccines.  These trials have had 100% success rate in the past.  No one has ever had a Her2+ recurrence and I’m not about to be a trendsetter when it comes to this.  If you haven’t heard the last name, Czerniecki, get ready to.  We talk about the C word with him – CURE.

The doctor that we had an apheresis consult with looked like he was about 10.  I wanted to squeeze his cheeks, give him a high 5, mess his hair and call him kiddo!

Having my jugular tapped was a little nerve-wracking!  I was awake for the 15 minute procedure.  I walked into the OR with my jeans, shoes and a hospital gown on and lied down on the table.  They covered me with blankets and asked if my hands needed a reminder.  I told them that I didn’t need the restraints.  I was asked to turn my head to the left at which point they pulled my gown down a bit, prepped me with towels and covered my entire face which freaked me out.  I felt like a dead person.  They cut holes out for my eyes and mouth.  Then, they scrubbed me with Betadyne.  The doctor came in next and numbed the area then inserted the line.  After I had the cath line placed and got up from the table, I turned around to see an entire room of fellows in suits looking into the OR from the window.  What did I do?  I waved to them!  A few minutes later, the mortified attending came in to apologize.  I’m having a procedure done at a teaching hospital.  I really didn’t mind in the least.

If I could have an Internet meme named after me, it would be called The Unnaturally Happy Cancer Patient!  If I could have anything named after me, it would be a sandwich.  Then a building.  Yes, a sandwich then a building!

They yank this puppy out right at the bedside after the apheresis is complete!  This all sounds 100x worse than it actually is.  I was really freaked out thinking about having to get this procedure done, but the anticipation is always worse.

MARCH

March brought along the end of my favorite television show – How I Met Your (Dead) Mother. Not only am I going to miss the show, but I’m also going to miss the music from the show.  Don’t even bother talking to me about the last episode, though.  I’m so pissed!  If you haven’t heard anything about the show then you were living under a rock for the month of March.  Is the mother dead?  No, she can’t be.  The writers wouldn’t do that to us.  OMG!  She IS dead!  Look, the show had a great run and kept me very positive while I was undergoing treatment.  I’m so glad that the show wasn’t wrapped up last March instead of this March because if I saw the ending last year I would have gone into a full-blown depression.  As you can imagine, it just hits a little too close to home that Ted was telling his 2 kids the story of how he met their (dead) mother.  I also don’t like that Ted and Robin ended up together at the end of the show.  Yuck!  After telling us for 9 seasons how they weren’t meant to be and then, BAM!  A few people who know how pissed I am asked if I’m going to watch the spinoff series – How I Met Your Dad.  Of course I am!  And, I’ll buy the complete HIMYM series to see the alternate ending.  Bastards!  All in all, it was a fantastic series and I would highly recommend it to anyone.  Although I wasn’t crazy about the finale, they did pull it all together nicely.  And, it made me realize that the show was never really about the mother, anyway.  The show was about the journey not the destination.

I started the vaccine clinical trial in March.  For 6 Fridays in a row, Sal and I reported to Penn and signed in.  Then, we walked across the hall and got set up in a room for about 2 hours.  Here, I met with Marie, the awesome trial coordinator, and Susan, the wonderful and skilled ultrasound tech.  She’s right up there with Katie Murphy!  Susan would prescan me and mark me so I was all ready for Dr. Czerneicki to inject me.  Oh, by the way, I receive the injections in my groin lymph nodes – they have the most blood flow.

The injections are a piece of cake.  Really.  Compared to everything else, this is all easy stuff.  The riskiest part of the trial has been driving with Sal.  I told him it would be an awful shame to survive cancer only to die in a car crash on our way home from Penn!  He makes fun of my driving but sweet mother!

March also ended with Jameson’s 7th birthday on the 26th.  Instead of having 2 parties this year – one family and one kid – we opted to take the big kids into NYC to see the show, Wicked, and to have lunch at the American Girl store.  The four of us had a ball.  Sal and I feel like we’re reliving our youth through our kids.

APRIL

I met with Dr. Ky, my Penn cardiologist, and also had a repeat ECHO.  My EF bounced back up already.  Diet, exercise and Coreg did the trick!

April saw the disposal of a very dear friend of mine, Sugar.  I threw the damn thing in the garbage can, literally, on April 8.  That’s not a roll of toilet paper that you see below.  That’s the super creepy head that Sugar sat on.  I forgot to give Sal a heads up about this and happened to be out of the house with the kids when he got home from work on this day.  He texted me that a heads up would have been nice!  Imagine opening the garbage to find this!!  By the way, I’ve become very good at spotting wigs from a mile away.  It’s a new gift that I’ve been blessed with!

The kids had their very first piano recital.  Below is a picture of Chase, Miss Jean and Jameson.  Jean is awesome.  She is a great teacher and the kids love playing.  This year, Chase played Twinkle, Twinkle Little Star and Supercalifragilisticexpialidocious!  Jameson played Flippant Flea and It’s a Small World.  The kids did a great job and we’re very proud of them.

We also attended an Easter egg hunt on a beautiful, sunny Easter Saturday.  My kids used their Halloween pumpkins for Easter baskets because I didn’t have time to look for their little Easter baskets that morning!  Hey, it was either using the pumpkins or a Kmart shopping bag.  The pumpkins looked cuter!  Stay classy, Sciandras!

April ends with one of the biggest fundraisers for the Pennies in Action Fund at Penn.  Unfortunately, it seems to fall on the same Friday as the Father-Daughter dance at Jameson’s school.  Guess what we choose to attend?!  It’s ok, though.  I have some things planned to raise money for Pennies in Action on my own.

MAY

And today is May 5.  Happy Cinco de Mayo!  It’s a beautiful, sunny day!  Cameron will be 2 years old in a few weeks.  Where is the time going?

SOME RANDOM THOUGHTS

• Kevin and Cori, I love you two and had a great time at your wedding, but I’ve been cursing you since we made it back.  I put on 5 pounds that weekend and can’t shake it!  Damn you!  So, now I’m planning on doubling the amount that I need to lose by the end of June.  I’m back on weight watchers.  Son of a beech!
• In retrospect, the worst part about cancer was the freaking ear infection.  Do you know that my hearing is still not what it once was?  It’s so annoying.  I also noticed that I lost a bit of my sense of smell.  It’s really weird.
• Sal and I have already started talking to Jameson and Chase about smoking, alcohol and drugs.  We even started talking about peer pressure in the terms of a PreSchooler and 1st grader.  Chase, especially, is the cigarette patrol.  He calls everyone out on it.  Although my genetic testing was negative, I still feel like the kids are predisposed to developing cancer – really, we all are.  We all have cancer cells and just can’t pinpoint what makes them go nuts.  Anyway, we’ve been discussing how important it is to stay healthy by not smoking or drinking, exercising and eating right.  We are trying to encourage Chase to eat more vegetables because he really doesn’t care for them.  He needs to learn to like them.  All kids need to be encouraged to do the right thing and we’re really trying.  We keep reminding the kids that Sal and I are the examples to follow.  Scary, right?!!  If Mom and Dad aren’t drinking alcohol then they shouldn’t be drinking.  If Mom and Dad don’t smoke, they shouldn’t smoke.  If Mom and Dad exercise, they should exercise.  We are trying our best to lead by example.  It’s funny how you grow up as soon as you have kids.  We’re not straight edge over here by any means but we’re trying really hard.  A month or so ago, we were at a friend’s house for pizza.  The next day, Chase knew how many beers Sal had so we’re very careful about what our kids see and don’t see.  I haven’t had a glass of wine in a really, really long time.  My kids won’t see me with one, either.
• I have a pill box like an old lady.  It’s filled with AM and PM meds!  I never thought that my 35 year old life would be like this!!
• I can’t get a cancer recurrence for the pure inconvenience of writing thank you cards – which are still not completed, by the way.  I’m getting closer and closer everyday.  If my father was alive, he’d be having a stroke.  He is cursing me out of embarrassment from heaven as I write this!
• I bumped into someone the other day that I haven’t seen in a while.  I think that a lot of people need to be reminded that every day is a gift.  Every day – no matter how crummy of a day it may seem – is a good day.  So, smile!  Tell others that you’re having a good day and remember that it can always be worse.  Always.
• Something struck me yesterday as we were sitting in one of our favorite local restaurants having breakfast after Mass.  There was a table of about 10 people sitting behind our table of 5.  I’m so frustrated with other people’s behavior in public – how rude people are to waitresses, how people gossip and have no regard for others around them.  Look, we live in a small area and we’re all separated from Kevin Bacon by 5 degrees.  Look it up if you don’t get it.  This table of 10 behind us was talking about someone recently diagnosed with cancer – first and last name stated.  These rude people have the poor guy dead and buried.  My kids, as are all kids, are very observant and very smart.  They pick up on things.  I didn’t want them overhearing this trash talk.  Bottom line:  have better manners and be more considerate of others.  Back to kindergarten basics:  if you don’t have something nice to say, don’t say anything at all…..or at least wait to say it when you’re in the privacy of your own home.  Some people are just plain Assholes.

So, as you can see by everything that’s happened over the course of the past six months, we have been busy.  We’ve been busy medically but we’ve also been busy living our lives.  People have asked me quite often, actually, how we managed to deal with everything that life has thrown at us.  Honestly, I don’t really know how to answer that.  You play the cards that you’re dealt, I guess would be my best answer.  Sadly, I don’t remember much of Cameron’s first year.  Everything happened so fast – we were sleep deprived and extremely stressed out.  I’m thankful for pictures and this blog.  One day, in a long time from now, I’ll go back and read “my story”.  I still have a long road ahead of me, but I feel great and I’m happy and proud to say that I feel stronger every day.

In closing for today, I wanted all of you to know that I have a lot of exciting things lined up, especially for the month of October.  I will be reaching out for your help.  Thanks again for wanting to read about my family’s life and for all of your continued support and prayers.  I couldn’t have come as far as I have without you.

“The goal is to live a full, productive life even with all that ambiguity.  No matter what happens, whether the cancer never flares up again or whether you die, the important thing is that the days that you have had you will have lived.”  – Gilda Radner

LIVESTRONG and God Bless!  …….and TIMBER!

Thanks, Pandora!

I just wanted to let you know that my blog is back online.  I’ll do a real post tonight or tomorrow.

LIVESTRONG and God Bless!