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!