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BarbStrong

Living…Fighting…Believing
Breast Cancer Ribbon

It Was Time

posted by:
Barb

So, we did it on Saturday afternoon!  I never thought I’d see the day when my husband would be using #2 clippers to shave my head!  There’s a first for everything, I guess!  God Bless Sal Sciandra.  He is a saint, really.  I know this isn’t easy for him, but he’s been so strong and has been handling everything with such grace and compassion.  I can’t sing Sal’s praises enough.

Here’s how it went down:  my sister, Ann, is visiting from California until this coming Wednesday.  She kindly asked to take Jameson and Chase to see Finding Nemo in 3D on Saturday afternoon.  I knew that my hair wouldn’t be able to take one more shampooing…..it was getting pretty bad……and I didn’t want the kids to come home to find me bald and risk the chance of scaring them.  I don’t want to say that I didn’t have a choice.  There is always a choice to make.  It just depends on if we make the correct one.  So, we decided to sit on our deck before the movie, put my hair into 3 pig tails – one for Jameson, one for Chase, and one for Cameron. Jameson and Chase each cut off a pig tail, Sal cut one off for Cam, and then he shaved it.

I’m feeling ok about it.  Actually, as Barney would say, I’m feeling AWESOME about it!  I’m happy that it’s finally over.  Having clumps of hair in my comb was turning into a stresser.  And, believe it or not, I’m actually happy that I have the creepy wig.  It’s going to take some time to get used to wearing it, but Jameson likes her Mommy better with hair and I want the kids to be comfortable.  I wear the wig out of the house and wear a hat around the house.  I actually need some more cool hats.  The one that I’ve been wearing for comfort makes me look like Voldemort from Harry Potter!

I’ve decided to share this with all of you, too.  Check it out.  GI Jane is much tougher than Barb Sciandra, so we’re fighting this correctly!  And, ladies, let me tell you……no hair totally cuts off on the amount of time needed to get ready in the morning.  I might opt for a bald head even when my hair starts to grow back!

“Out of clutter, find simplicity.  From discord, find harmony.  In the middle of difficulty lies opportunity.”  – Albert Einstein

LIVESTRONG and God Bless!

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Be Your Own Advocate

posted by:
Barb

Hey Everyone!  I hope that all of you had an awesome day today.  The weather here, in NEPA, has been beautiful.  I hope that each one of you are enjoying it.

I decided to write about being your own best advocate today.  No one knows you better than you.  If you don’t know enough to be your own advocate, find someone who can be your voice for you.  I’ve been hearing too many stories, recently, about young women getting swept under the rug with regards to lumps in their breasts.  Breast cancer strikes 1 in 8 women and does not discriminate based on age, race, color, etc.  Since beginning this journey, I’ve spoken with at least half a dozen women with stories similar to mine.  If something doesn’t seem right to you, please continue to pursue it.  Be persistent.  Don’t take no for an answer.  Because you know you best, if you think something is wrong it most likely is.  Women of mammogram age (between the ages of 35 and 40), GET YOUR MAMMOGRAMS!!!  See your OB-GYN on a regular basis.  Visit your family doctor yearly.  Get your blood work.  Take care of yourself.  You have too much to live for.

Also, our health care providers need to be aware of the fact that breast cancer can affect young, even pregnant, women.  This isn’t something to mess around with.  If a patient comes to you with a lump, follow up with this.  Women are putting their faith and trust in you.  This matter can’t be taken lightly.  Refer your patients out to breast care specialists even if you don’t feel as though it’s something serious.  You can never be too sure.  Specialists are specialists for a reason.  I wouldn’t trust an orthodontist to perform heart surgery nor would I trust a dermatologist to perform brain surgery!  Be a good quarterback.

Thanks to each of you for posting all of your comments.  I love reading what you write and appreciate your love and support.  Have a great start to the weekend!

LIVESTRONG and God Bless!

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The Letter

posted by:
Barb

Dear Cancer,

I’m sorry to do this in the form of a letter, but I don’t want to speak your name or have to look at you anymore.  I wish to no longer be associated with you.  I feel like a coward writing to you, but you haven’t been very considerate to me.  Really, it’s not you, it’s me.  This relationship has become volatile; it’s just not healthy for me.  I actually needed to seek treatment because of you and the treatment is making my hair fall out.  You’re making me physically ill.  Please, don’t contact me or anyone in my family, especially my children.  Kindly leave everyone I know alone.  Don’t bother any of my friends either.  None of us want anything to do with you.  You can have all of your things back, too.  I don’t want any reminders of you lurking around for fear that you’ll be back to bother me in the future.  Rest assured that we’re never getting back together.  We’re finished. We can’t be friends; it simply won’t work.  I’ve decided that I need to focus on me and my family right now.  I have to be completely honest with you.  There’s someone else.  His name is Life.  And, as it turns out, he’s been right in front of me this entire time but I never took the time to really notice him.  We’ve decided to go on living happily and healthily together.

Regards,

Barb

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Round 2

posted by:
Barb

Hey Everyone!  I had chemo treatment #2 today!  It went awesome.  My sister joined Sal and I today, too.  I actually feel better after this treatment than I did after the last round.  I feel terrible about something, though.  Sal and I met with Dr. Saidman today.  Remember a few posts back when I wrote about telling Dr. Saidman to give me a real dose of chemo, not the sissy kind?  The poor guy pulled my chart after I spoke with him to make sure something wasn’t wrong.  He worried that there was a miscalculation regarding my dosage.  I’ll be seeing Doc quite a bit…..for the rest of my life, actually.  He’ll have to learn quickly that I can only be taken seriously 10% of the time!

All’s going very well.  Dr. Saidman spoke to Sal and I about my treatment plan.  After I complete the Adriamycin and Cytoxan cycle (2 more treatments), I’ll have 2 weeks off and will begin Taxol and Herceptin every week for 12 weeks.  I’ll finish up with chemo in January and will move on to the next thing…..surgery.

I’m still obsessing over my hair.  I ordered more hats from Urban Outfitters last night and put a rush on the shipment.  The hair – it’s going.  I can’t bring myself to shave it just yet.  I’m worried about 2 things:

1.  Denial!  I keep telling myself that maybe I won’t lose ALL of my hair.  Why shave it off if there’s a chance that ALL of it won’t go?!  Dr. Saidman and Lisa (our cool nurse) assured me that ALL of my hair WILL fall out….probably within the next few days!  I’m having a tough time coming to terms with this.  Once my hair is gone, it feels too real.

2.  My kids – I’m worried that they’ll be afraid of me.  As much as I try to prepare them for what’s going to happen, I’m still scared that they’ll be scared.

Sal said something really funny yesterday.  He said, “Barb, think about the leverage that this gives you.”  I said, “What are you talking about?”  He said, “I can just picture you not seeing eye to eye with the girls as they get older.  Jameson and Cameron will come whining to me about – Mom won’t let me wear makeup or be friends with so and so or ride in the car with this boy, etc.  I’ll simply say – Girls, do you really think you stand a chance of winning an argument with your Mother?  She beat cancer, remember?!!!!”

LIVESTRONG and God Bless!

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Giving

posted by:
Barb

“You will find, as you look back upon your life, that the moments that stand out are the moments when you have done things for others.”  – Henry F. Drummond

I added this quote, to begin today, for a few reasons.  First, I believe that health care providers are incredible people.  If not for their intelligence, research, motivation, and calling to help others, we would not be where we are today as far as advancements in medicine go.  Doctors and nurses are such special people.  We left the University of Pennsylvania at 7pm last night.  Dr. DeMichele was the person locking up because everyone else had already left for the day.  When we met with Dr. Saidman a few weeks ago, he stayed after hours to meet with us.  He was late for dinner with his family and was also the last person in the building.  My cousin, Dr. Blaum, calls to check on me after hours and on the weekends and has helped me with every arrangement made up to this point.  Why do they do what they do?  Because they really and truly care about the well being of their patients.

Another reason for adding this quote is to encourage each one of you to give of your time, talent, or treasure.  It’s so important and it will make you feel so good about yourself.  Find an organization that you feel passionate about and give to them in one of those ways.  My friend, Nicole, says that, “Those who have – give,  and those who need – get.”  Be a giver.  I learned a lot about this during the past year through an organization called Leadership Wilkes-Barre.  Trust me….once you start giving of yourself, you’ll find a new sense of you.

The most important gift that we can give to each other is our time.  Time is valuable.  Spend it wisely.  I’m trying, myself, to be more selfish with my time.  Of course, we all have commitments and some things we wish we didn’t have to do.  Unfortunately, having dinner with (insert name here) is a part of life, but these commitments shouldn’t consume our lives.  I want to teach my kids to be responsible and respectful, but I also want to encourage them to live their lives in such a way that makes them happy.  Life is too short to spend one second being unhappy.  Enjoy your family, your friends, your relationships, and your work.  And, if you don’t enjoy any one of these things, find a way to enjoy them or be more selective with how you’re spending your time.

So, I mentioned Penn.  Sal and I had an awesome visit with Dr. Angela DeMichele at the University of Pennsylvania.  She was so kind and encouraging.  For the first time since this journey began, I have peace of mind.  Dr. DeMichele told me that my cancer is 100% CURABLE.  My chance of recurrence is 10-20%.  And, if it does come back, we simply treat it.  Like I said, the research and advancements from even one year ago are amazing.  Cancer treatment isn’t the same as it was 10 years ago and I’m not stuck with a death sentence, by any means.  One day, we’ll talk about “that time that I had cancer” like it was no big deal.

To end today, let’s do it with a laugh!  I’m obsessed with my hair falling out!  Really.  Ask Sal and my sister.  It’s all I can talk about.  I’m in partial denial, partial procrastination.  The process started happening today which means that I will likely be sporting a cool beanie cap by the weekend.  Hair is overrated anyway, right?  I’m worried that losing my hair might be more traumatic for me than the actual diagnosis……and I don’t even particularly like my hair!  The good news:  I’ll have one heck of a Halloween costume this year!  Oh, a big, huge, shout out to my cousin, Jim Pat.  He shaved his head in support this past weekend.  Check out my photos tab – he’s the cool bald guy standing next to me!

Round 2 of Chemo tomorrow.  Sorry, cancer.  You’re going….wait for it….DOWN!!!!

LIVESTRONG and God Bless!

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Fight Like A Girl!!!

posted by:
Barb

Hey Everyone!  I hope that all of you reading this are having an awesome weekend!  I have a few updates for all of you today.

First, Sal and I received some great news on Friday.  My genetic testing for the BRCA1 and BRCA2 gene came back negative!  This means that there is no genetic component to my breast cancer.  It’s just a crazy, fluke thing.  Thankfully, this means that my Mom, sister, and children are not at an increased risk for developing breast or ovarian cancer.  It also means that I might be able to hang on to my ovaries.  Maybe – we’ll see.  Just to be safe, they’ll be running what’s called the BART test to be doubly sure that nothing is going on, genetically.  Things are looking up!  I constantly remind myself that it can always be so much worse.

Quick wig update:  The creepy wig is sitting on a creepy mannequin head in my upstairs hall closet……just in case anyone reading this plans on breaking into our house and stealing it!  I’m convinced that the head and the wig come alive at night and float around my house!!  After picking it up on Thursday, I called my friend, Nacole, who has been styling my hair since I was 20 years old.  She is an absolute doll and had me come right in to the salon to see her.  I know that she stayed after her shift to help me out even though she has a family – a wonderful husband and an adorable 1 year little girl waiting for her at home.  She made me 110% comfortable, put me in a private room, trimmed the wig, and got it looking pretty damn good.  I appreciate the kindness and compassion of other more than anyone knows.  And, truth be told, the wig is nicer than my real hair!  Whether or not I’ll actually wear it is another topic for another day!

I, along with my family and friends, participated in the Susan G. Komen Race for the Cure Walk/Run this morning.  It was just awesome to be a part of this event.  I am blessed to have such a strong support system.  Many of my very close friends and family traveled distances to be here today.  It was so good to be with my sister who traveled in from California, my college friends, high school friends, Holy Rosary School family, immediate family, extended family, neighbors, friends, friends of friends.  Many people that I haven’t spoken to in years made very generous monetary contributions to help fight this ugly disease.  Thank you all for thinking of me!  I am blessed and truly humbled and can not even begin to express how fortunate I feel to have each one of you in my life.  And, as always, we don’t mess around!  Team Barb, in just 2 short weeks, raised more money than any other team participating today.  “Barb’s Army – We’ve Got Barb’s Back” – raised $4725 and is still going strong.  All of this money goes directly to breast cancer research and awareness.  I am so proud to have such amazing people sharing this journey with me.

This is because of YOU.  Check it out:  I have an awesome plaque to hang on my survivor’s wall!

I’m looking forward to a low-key day with my husband, children, sister, and family tomorrow.  Sal and I will be traveling to the University of Pennsylvania on Monday afternoon to pick their brains a bit.  I have my second treatment on Wednesday which I’m psyched for!  Let’s rock and roll!  Enjoy the rest of this wonderful weekend!

“Don’t divide your life into weeks, months, or years.  Rather divide your day into moments.  Then live each moment as if it were one full life.”                              -Author Unknown

LIVESTRONG and God Bless!

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Suit Up!

posted by:
Barb

I have a few thoughts from today.

1.  If you don’t watch How I Met Your Mother, you should start.  Granted, I only watch the re-runs, but the show rocks.  Barney Stinson is my favorite character.  Sal and I live by the following quote, “When I get sad, I stop being sad and be AWESOME instead.  TRUE STORY.”  I feel better today than I have in months!  Really.  Cameron is sleeping very well for us – 9 to 10 hours at night now.  She really is an angel.  Jameson and Chase are doing great.  They love school and are just two happy kids.  We’re the luckiest parents in the world.

2.  I’m going to be the first person, ever, who gets fat during chemotherapy!  Thank you all so much for the wonderful meals and gift cards.  You have no idea how much we appreciate the help.  My aunt told me that God sends us angels when we need them.  I truly feel surrounded.  I don’t know what I’ve ever done to deserve such kind people in my life.

3.  Can someone please write to Bobbi Brown and ask her if she makes a “chemo concealer”?!  I just don’t ever want to look sick while this is going on.

4.  Which leads into this topic – the wig!  I probably shouldn’t even be blogging about this but what the hell, right?  It’s a part of what’s going on.  I received the call yesterday that my cranial prosthesis is in.  Nope, I’m not kidding!  Some insurances pay for wigs so that’s how they refer to them.  What is this world coming to?!!!  Anyway, I guess I’m going to buy one, but I just can’t picture myself wearing one.  I have a bunch of funky hats that seem much more Barb.  Thoughts, anyone?  Please, don’t hold back!

5.  If anyone out there has any good music mixes, let me know.  I’d love a copy.  I listen to Pandora quite a bit and have been drawn to songs that get me psyched and in a good frame of mind.  I’ve also been listening to songs that have special meaning, too.  For example, I saw a Storytellers featuring Jason Mraz just days before my diagnosis, unbeknownst to me.  He wrote his song, The Remedy, for his best friend after he was diagnosed with cancer.  His friend is 10 years in remission!  Good Life by One Republic is the song that Cameron was born to.  The OB usually has music on in the OR during a C-section and this was Cam’s song.

I really feel so good today……like I can conquer the world.  I believe that cancer doesn’t stand a chance.  Sal and I discuss often how much of this is a mental battle, too.  If I believe it, it will happen.  Sal and I still have so much to teach our kids together that I WILL beat this disease.  I just keep picturing myself holding Jameson’s baby girl, dancing with Chase to Beautiful Boy at his wedding, and being there when Cameron wins the Nobel Prize for curing cancer.

My recovery, as Barney would say, “It’s gonna be legend…..wait for it…..and I hope you’re not lactose intolerant because the second half of that word is DAIRY!”

LIVESTRONG and God Bless!

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Life, in general…..

posted by:
Barb

Hey Everyone!

I hope that each one of you had a great holiday weekend.  We’re back in the swing of things at the Sciandra house.  We came off of a nice weekend.  I enjoyed seeing my family and friends so much.  Jameson had her first full day of kindergarten today and all of the kids looked way too cute in their school uniforms!

Sal and I spent some time at the oncologist’s office late this morning for a quick check-up and some blood work.  All is looking good!  The only “off” number was my platelet count, but it was minimal.  I kindly asked Dr. Saidman to give me a real dose of chemo next Wednesday instead of the obviously sissy dose that they administered last week!  We’re still waiting on the hormone receptors from my right breast and my left breast is different than I originally thought.  I am ER+, PR+, HER2+.  We spoke with Dr. Saidman about this for quite a while trying to calm my nerves.  Being HER2+ is a double edged sword.  It means that my cancer is more aggressive, but there is also an extra drug that can be used as a form of treatment.  Let’s face it.  My therapy wasn’t going to change.  It’s not like I was trying to save my breasts.  They’re going!  Both of them!  Gone!  But, I’m human – I’ve spent time researching, googling, reading, speaking to intelligent individuals, etc.  The great news is this:  the advancements that have been made with regards to cancer, breast, specifically, are unbelievable.  I strongly support the Susan G. Komen Foundation for shedding so much light on this illness.  I’m hopeful that advancements will continue to be made so that there are even more formulas that can be used to beat this terrible disease as soon as one or two years from now.

Any one who knows me knows that I’m competitive.  I love a challenge – mental or physical.  For this reason, it’s very difficult for me to put my life in the hands of others or to take the se la vie approach.  I’m a typical first born, type-A+ personality!  This journey, so far, has become very spiritual for me, as well.  I’m realizing that life, for the most part, really is out of our control so we should just live it.  I do not believe that God causes illness or suffering but that he can promote healing.  So, prayer does work.  Please keep me in yours.

I read a quote from Robert Frost a few moments ago:  In three words I can sum up everything I’ve learned about life:  It goes on.

Guess what?  It does and it will!

LIVESTRONG and God Bless!

P.S.  I love my husand’s wit.  He told me when cancer pulls a knife, The Sciandra’s pull a gun!  Hysterical!  He’s really a very calm and kind person.

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My Mortality

posted by:
Barb

We acknowledged each other this weekend.  I accepted his/her presence and told him/her to get lost for at least 50 more years.  I realized something.  I’m not scared of my treatments, of the surgery, or even of death.  I accept my mortality……just not yet.  I feel lucky to have been given this opportunity to take a much more introspective look at myself.  I’m trying to figure out how I can live a better life for my husband, my children, and me.  In just 2 and 1/2 short weeks, this experience has brought me closer to my husband, to my children, and to my family and friends.  For this, I will be grateful.

In thinking, I was reminded of James Valvano, known as Jimmy V.  Jimmy V was a basketball coach who became famous for leading North Carolina State to win the NCAA Tournament in 1983 against the odds.  Valvano is also famous for his ESPY Awards speech which he gave in 1993 just 8 weeks before he died of cancer.  His speech stressed the importance of hope, love, and persistence and included his famous, “Don’t give up, don’t ever give up” quotation.  I’d like to share part of his speech with you.

To me, there are three things we all should do every day.  We should do this every day of our lives.  Number one is laugh.  You should laugh every day.  Number two is think.  You should spend some time in thought.  And number three is, you should have your emotions moved to tears, could be happiness or joy.  If you laugh, you think, and you cry, that’s a full day.  That’s a heck of a day.  You do that seven days a week, you’re going to have something special.

Valvano’s ESPY acceptance speech became legendary, and he closed by saying, “Cancer can take away all of my physical abilities.  It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul.  And those three things are going to carry on forever.  I thank you and God bless you all.”

Each one of us could learn something from Jimmy V.

LIVESTRONG and God Bless!

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Wait for it…….

posted by:
Barb

So, apparently, chemo makes you tired!

I received chemo on Wednesday and slept for half of the day on Thursday and all day and all night Friday.  I started feeling “normal” again around 7pm on Saturday evening but didn’t sleep at all last night……probably because I slept more than I have in years on Friday!  All in all, everything is going well. Chase slept at Sal’s parent’s house on Friday evening. It gave Sal, Jameson, and I time time outside laying on a blanket in our yard watching the clouds go by while Cameron slept in her crib. We had a nice family lunch and spent time on the swings in our yard. In going through all of this, I’m realizing that I was living my life too quickly and taking small opportunities such as this for granted. Jameson and Chase, our 2 “big kids”, slept at Sal’s parents house again last night which gave Sal and I some quiet time with the baby.  What a blessing!  Last night was the first time in about 3 weeks that I felt like nothing was wrong in the world. It was nice having dinner with Sal, just the two of us, while the baby slept. Again, the little things in life are what count.

Now, let’s get to the Elephant in the Room. I’ve run into quite a few of you since this ordeal began. I know it’s awkward, but please just try to remember something. I’m still Barb. I just happen to have cancer at this particular time. It’s temporary, remember? Please don’t treat me any differently or look at me with pity. It’s ok to joke…..even about the cancer or my impending “boob job”. Remember, if you think it’s funny, I’ll think it’s hilarious.  Don’t be afraid.  My kids are obsessed with my hair falling out, so fire the jokes away!

How about a quick Q&A session today? Please feel free to ask me any questions that you might have about what’s going on. Let’s get started with some questions that I’ve already received:

1. Scott Frazier, I will try to mention your name at least once in every blog entry! Nate Berkus will definitely play you in the movie. That’s a no-brainer.  Like you, he’s handsome, smart, witty, stylish, and one hell of an interior designer! As we know, though, Fraz, the world of interior design needs me!

2. Colleen DeFrank and Kristin Lazevnick, I apologize again for the near Christmas Eve mishap of 1995. Let’s just consider it an extremely close call. That might be chalked up as the one true Christmas miracle!  God Bless us, every one, is right!  Apparently, The Sciandra’s enjoying stealing VHS tapes. Kristin, to answer your question, we would have watched Nestor had we known that we had it. Sal must have had your copy since 1985. I’m just thankful that it’s back in your hands 27 years later!!

3. It seems that this question has been coming up quite a bit. Many of you are wondering why I’m going through chemotherapy prior to the bilateral mastectomy. Here is the reason: The cancer in my left breast is pretty in depth. My skin is involved. Although only a small portion of my skin will be used during the mastectomy, our hope is to kill all of the cancer on the skin prior to the surgery. This gives me my best shot. Chemo is the best way to do that, followed by radiation after the surgery. Make sense?

I realized that I would be remiss without thanking my cousins, Emily Bradshaw and Karen Turi, for also working so hard to get things underway for the walk next weekend. As you all know, I’m not on Facebook, so I’m rather out of the loop. I still don’t even have 1/2 of my family’s e-mail addresses!  I know, I know…..and my husband is a computer guy!

The following is pretty difficult for me to discuss.  One major problem that Sal and I seem to be having is accepting help from others. There is no way that I’ll ever come close to repaying each and every one of you for your kindness and generosity. It kills me that all I can do is say THANKS from the bottom of our hearts. I feel the love surrounding me, I just hope that all of you can feel it being returned.  I’d much rather be on the giving end rather that the receiving end but we’re coming to terms with the fact that it’s just not possible right now.  I can’t thank you all enough for the outpouring of love and support.  It really does mean the world to me, to Sal, and to our families.

Well, hopefully, I’ve answered some of your questions. Shoot away. Don’t be shy. Have a wonderful day today and a great Labor Day tomorrow.

LIVESTRONG and God Bless!!

P.S. Scott Frazier – one more time for good measure!

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