"Just Keep Swimming"

Update 07/16/13: "Angel's For Talia" Facebook Page:

"It is with a heavy heart that we share with all of you that Talia has earned her wings at 11:22am. Please lift her beautiful soul, her beautiful light to heaven and please send your love and prayers to her family during this most difficult time. God speed little one, may you be free from pain and suffering, may your soul feel the light and love that you brought to so many of us on this Earth during the short time you were her with us. We will miss you more than you will ever know baby girl."

(source: Angel's For Talia)

Talia - I am forever changed because of you; thank you for showing me how to be a true WARRIOR, not only with cancer but also with life. We will never stop swimming for a CURE. May you now dance with the angels. Rest easy  <3

-LISA

My original post:

     

     You never know where you will find a hero; for me it happened on an "ordinary" post-infusion chemo afternoon. I was lying in bed, still hooked-up to my 5FU, watching The Ellen DeGeneres Show hoping to catch a laugh or two to get me through the day. 13-year-old aspiring make-up artist, Youtube beauty-guru, & cancer WARRIOR Talia Castellano, danced her way to center stage. She was fighting not 1 but 2 incredibly serious types of cancer & had been since she was 6-years-old, but that didn't stop her smile from sparkeling from pierced-ear-to-pierced-ear. When asked how she stays so strong & positive, her eyes lit up as responded that a little fishy told her to "just keep swimming, just keep swimming", which refers to Ellen's voiced character Dory in "Finding Nemo". I immediately went to her YT channel & instantly fell in love with this girl who's motto is "Make-up is my wig!". Watching her videos & following her on social media soon became a part of my schedule &, at times, a lifeline. She showed me how to be a cancer warrior; she reminded me to dance when I hear the birds sing, to smile when I see the sun, & live every minute of every day regardless what is happening around me. It literally makes my heart hurt to say her cancer spread & her prognosis became terminal...but she still smiled & danced & lived. She is, without-a-doubt, the most talented, bravest, strongest, beautiful warrior who has graced this Earth & now she needs us. Months ago Talia was admitted to her local children's hospital & recently things are only getting worse, especially over the last week. Talia's family is asking for prayers - prayers to free Talia from constant pain & nausea & for rest for her tired body, in whichever way that means. 

From Talia's Official Facebook page: "‎#prayfortalia ‎#taliajoy18 - Please join the Twitter and Instagram prayer group for Talia. Use these hashtags on all of your Twitter, Instagram, Facebook and Google+ posts and send a prayer to Talia. Let's blow up the internet with prayers for this amazing girl!!!"

Angels for Talia - Official Facebook

Talia's Youtube Channel

Talia's Twitter

Talia's Instagram

(source: "Angels for Talia")

(source: @taliajoy18 - Talia's Twitter)

(Talia was officially made an honorary Covergirl)

Summertime & the livin's easy...

    Well hello there, my how I've missed this place! Apologies for my temporary MIA status  - that was my longest span without posting since my recurrence sabbatical…but no worries! I’m totally fine & life is slowly but surely getting back to some sense of normality, well back to a "new normal" if you will.  
    Summer is here (which is absolutely not menopause-friendly btw) & since I’ve been a little hush-hush lately, I thought I would catch you up on the last few weeks & let you know what’s happening on this side of the screen.
     I had an appointment at the Mary Babb Randolph Cancer Center  in Morgantown, WV the last week of May & I’m EXTREMELY happy to let you know that my blood work looked great! Most importantly, my CEA (or tumor marker) lab is holding steady around 0.5 which is awesome! HUGE sigh of relief! I was also able to meet with my oncologist & put together a preliminary “maintenance” timeline & schedule my next 6 month scan for late September. In addition to that awesomeness, my body is finnnnalllly at a psychical stability point where I am starting to drop some of my Xeloda (my last type of chemo) weight. So far, I’m down a little over 20lbs! Score! I still have a bit more to go but I’m starting to feel more like Lisa than I have in a long, long time & it’s a really, really good feeling.
    I had my chest-port removed which was a surprisingly bittersweet experience for me. I’ve met quite a few people who have said they felt liberated when they were rid of their ports, but for me…just the idea of having it removed made my head spin & sent shivers down my spine.
    I had my port for right around 3 years; when I went to the cancer center for my monthly flush in early May, I felt this strange sensation above my port almost instantaneously as my nurse began to push saline. She immediately stopped & called back to my oncologist, who sent me for a port-flow study. In 1 word? OUCH! Literally in the running of top 5 pains I’ve experienced in my entire life; it felt like I was having a heart attack. After I was injected with what felt like tiny liquid daggers, the pain shot up the right side of neck & down the right side of my chest. Again to which I say “OUCH!”. The results showed an obstruction near the “right subclavian central venous catheter at the level of the proximal SVC” which, in non-medical-babble, simply translates to me having a blockage. About a week later, I would find myself full-circle, back in the OR for a port procedure with my surgeon & superhero, Dr. B.
    Prior to my blockage knowledge, I had intended to leave my port in for the entire “5 year”  stretch. Already having 1 recurrence only meant I could be more likely for another go’ round & if that were to happen, I wanted to be 1 step ahead. With any type of cancer, you’re constantly reminded how NOT in control you are of your own body & your life. So when something presents itself that will give you any sort of control, you bite. Knowing that my port was ready if ever needed was comforting; it was my security blanket in a world where you never really feel secure in your surroundings. Ultimately, I was able to realize that having my port removed didn’t mean cancer was more likely to walk back into my life, it meant I was continuing to walk on with my own life regardless of cancer. So, after a Propofol-induced catnap, my port was out & I was 1 step closer to a cancer-free life.
     My family & I recently escaped to NC for an early Summer vacay & we had blast! I love seeing my parents smile & nothing beats watching my niece & nephew chasing each other on the beach. I love those small, random moments when you can sit back & realize how amazing life is because it is & regardless of the past, I'm extremely blessed.
     I have SO much I want to accomplish this summer & quite a bit of it has to with GDHC. Sharing my story has changed my life in more ways than I could have ever possibly imagined & I'm really excited to start talking to other WARRIORS who are ready to share their cancer journeys with you. We are all united through hope & together we CAN make a difference.
     I'm also hoping to start posting occasional vlogs to let you in on other aspects of my world & to use as a lifeline when writer's block decides to strike. ;)
     I hope you're having an amazing summer so far & enjoying a healthy dose of the sun. Talk to you soon. <3

-LISA

Oak Island, NC

    

P.S. - Happy Father's Day to my birthday buddy & the hardest working, most handsome, raddest daddy around. I love you more. <3

   

   WE ARE ONE.

(Photo courtesy of giftsforawareness.com)

First Time

     The first time I heard the word "colostomy" it was very casually & quickly preceded by the word "permanent". I remember bracing my arms on the examination table & shaking my head from side-to-side like I was trying to get water out of my ears. I looked up to find the eyes of my parents & Chad focused on me; they all knew what I was thinking. PERMANENT COLOSTOMY?! My mind split into a thousand pieces & scattered in every possible direction. PERMANENT COLOSTOMY?! I was 26, a dancer, &, a newlywed. My body was so much more than just my "shell"; it was my art, my passion, my therapy, & at the time, my job. This was, without-a-doubt, going to change my life in a very substantial way but then again, cancer had already started to do so. My mind was a hurricane of  incomplete sentences, what if's, & swear words that, even at 26, I was hesitant to say in front of my parents. The next thing my surgeon said put all the doubt, reservations, & uncertainties into perspective; he looked at me & said: "I am never going to lie to you; because your tumor is so large, your sphincter has been completely compromised which means this will be irreversible. You will have this for the rest of your life BUT this will give you the rest of your life". Since diagnosis, I was desperate for an "ace" - something that would help my mind wrap around the fact that I was facing something that could very easily take me away from my family & Dr. B had just hand-delivered my ace. There was no question as to if I could or would do this. I was all-in.
     My first six weeks of chemo & radiation came & passed by much quicker than I had anticipated &, ready-or-not, I found myself face-to-face with August 19, 2010. 2 days after surgery I had my first look at my stoma (the opening made on my lower-left abdomen) in the ICU when my Ostomy Nurse, Robin, came to talk all things "Colostomy 101" with Chad & myself. It was very-much sensory &  informational overload with words I couldn't pronounce & never-ending options as far as the stoma could see. I somehow managed to keep my composure until Robin left the room & then instantly let my guard fall. It was like someone cued the waterworks & I was ever-ready to hit the mark; I cried heavy tears: tears of anger & fear, tears of uncertainty & nervousness. I cried for the "me" that existed before cancer, before tumors, & before colostomies. I cried so deeply for the 26-year-old who wanted so badly just to live a normal life. Then, something clicked - Dr. B's words replayed in my head: "you will have this for the rest of your life BUT this will give you the rest of your life". What was wrong with me??? I was still breathing & my heart was still beating. I was still alive. I quickly made the decision to allow myself to mourn the "old me" for 10 minutes. I could cry, be mad as hell, & hate the world for 10 minutes & believe me, I definitely did. On the very-eleventh minute, I wiped my eyes, took an extremely deep breath, looked down at my colostomy, & whispered: "thank you".
     Life post-colostomy is so incredibly less dramatic than I had ever expected. Stella (yes, she most definitely has a name - she's my homegirl!) is only a small part my battle & I am thankful for her existence everyday. My colostomy allowed me to celebrated more birthday's, anniversary's, & Christmas's with the people I love so much. I'm able to wake-up next to my love every morning & say "sweet dreams" to my family every night. Life is beautiful & I can't wait to experience every tomorrow that comes my way.

(Photo courtesy of  CNN.com)

What Lies Beneath

      Since we've been seeing each other for a while & before we get even more serious than we are now, I thought maybe we should talk. I mean, I think we're in that part of our relationship where I tell you more about myself because if we're going to continue with this little thing we have going on, you should know that there is SO much more to me than a past full of pirouettes, cancer, & distance-running from the cute lost-control guy at work.
     I'm the youngest of 4 children; my sister (Barbara) is 12 years older than myself, my brother James was 10 years older, & John was 4 years older than me. Obviously my parents saved the best for last because I was the fourth born...on my dad's birthday actually & yes - I was absolutely his best & favorite birthday present ever. ;)
     I'm named after my "mom & dad #2", Sis & Jim's, daughter - Lisa Marie Wright - who passed away in the early 80's a few weeks shy of her 16th birthday. She had chronic asthma & allergies that she struggled with for most of her life &, sadly, became an angel during a severe asthma attack. Although we never had the chance to meet, I've always felt a really strong connection with her. The car that was meant for her 16th birthday would become my first car: a red 1989 Toyota Corolla. She was a ridiculously talented drummer & when I was pretty sure I was destined to be a teenage rock star, Sis & Jim surprised me on my birthday with her golden-shimmer drum-set, which I still have & plan to pass down to our (one day) adopted son or daughter.
     I totally duped Chad into meeting my family for the first time. We planned to meet-up after work one night & then decide what we wanted to do. We ended up coming back to my house to so I could change, but little did Chad know that my parents & my Gram were at home & he was about to meet them...with no warning or preparation. Of course they loved him & he passed the "parent test" with flying colors, but this is one of those "remember when's" he doesn't let me forget. Something I never let him forget? He never really asked me to be his girlfriend; he referred to me as his girlfriend (which I obviously didn't dispute!) on January 31, 2009 at a get-together with friends but didn't officially ask me until I pointed it out around our one-year anniversary. Eh, technicalities! ;)
     My parents gave me the ultimate 21st birthday present - the Las Vegas experience! My mom, dad, Sis, Jim, Chad, & myself, flew from Pittsburgh to LV & spend four amazing, February days in 80 degree weather. I didn't return as a multi-millionarie but it was one of the best trips of my life.
     I originally majored in Nursing my first semester of college. The first time we had clinicals at the hospital I was asked to foley a much-older gentleman but refused because I was literally shaking with fear of hurting the guy! Needless to say, I switched my major the following semester to undecided, then to forensic psychology, & then to general psychology in which I now have a Bachelor's Degree (I also have an Associate's Degree in Criminal Justice).
     I love, love, love college football; yes, my husband absolutely converted me. Our first season together I spent the majority of the time on the phone, but now I'm the one swearing at the refs for missing the very-obvious holding, block-in-the-back, & pass interference calls; to which Chad's mouth still drops open in pride only to be followed by "I love you!". So really it's always a win-win for me.
     A piece of advice from my late-brother John that I hold close to my heart is that any life answer can be found in a song but it's our job to dig through the music & the lyrics to find that 1 song that holds the key to our situation. I'll never forget how his voice sounded when he said those words to me when I was 18.
     I believe everything happens for a reason but that sometimes we have to wait out the pain, the fear, the tears, & the uncertainty for life to unveil that reason. I have every excuse in the book to be completely pessimistic about life in general but, to me, that would mean part of life's charm has disappeared, & where is the fun in that? I like to wake-up everyday & remember what lies behind me because I know, in the long run, it will barely compare to what lies inside of me.

-LISA

3 Years - "What A Long, Strange Trip It's Been"

     It’s “officially” been 3 years, or 36 months, or even 1,o96 days if you like (counting 2012 as a leap year) since cancer collided with my semi-normal 26 years of life on April 28, 2010.
    Since the words “you have cancer” became an unexpected reality in our life, I’ve made it through 28 pelvic-radiation treatments, 3 different chemotherapy regimens, & 2 major surgeries (August 2010 & September 2011); however, without-a-doubt, the emotional & mental journeys have, by far, outweighed the physical.
    Looking back now on who I was 3 years ago is like looking back on an old high school year book. I was so naïve but so sure I had this life all figured out. I had planned to continue with my love of dance, hoping to one-day open my own studio. We planned to build our dream-home & soon begin starting our own family. Or course none of that happened & it took quite some time for me to accept the hand that I had been dealt. I remember feeling so lost & being so angry; I didn’t understand why this disgusting disease was fated to be part of our life but it was &, in one way or another, always will be because it affected our life on every possible level.
     Friendships that I thought could weather any storm took cover & I found myself relating more to (then) strangers than people I had known most of my life. The family Chad & I dreamed of & for so long talked about starting would never be, yet I would have to spend my days & nights constantly nauseous & vomiting like some sort of sick sterilization joke. A body that was not only my job but also my love & my passion was suddenly ridden with aches & pains that I didn’t even know could exist. My once “don’t have to worry about it” metabolism would go MIA, leaving me to blindly navigate a complete physical transformation with treatment & surgery; and as silly & vain as it may sound, it was something that took a substantial emotional toll on me & something that took quite a while for me to come to terms with.
    On the bright side, this “cancerapade” has given Chad & I the opportunity to fall even deeper in love with each other. One of the very few upsides to having cancer is all the time we were able to spend together, although I really don’t know how he did it, hell, I got on my OWN nerves a few times! ;) We know we can beat anything this world can throw our way, because we have & I know we will only continue to do so. We will have our family one-day, it will just be a few years later than we had planned, which is absolutely fine because as the great John Lennon once said: “life is what happens while you are busy making other plans."
     Yes, cancer took a lot out of my life but it didn’t take my life. If anything, it gave me not only a second but also a third chance in this world to see what & who are really important & essential around me. I’ve met amazing people had I not known if not for cancer. I know the true warrior that lies beneath my skin had I not known if not for cancer.
     I am who I am not because cancer walked into my life...I am who I am because I didn't walk out on myself & that, in my eyes, is the ultimate victory.

Thank you for being part of my journey. 

 

Dancing With Words

     I grew-up in the dance world; spending my evenings at a local dance studio sashaying my way through the world of ballet, tap, & jazz. My first love would come much earlier than I had ever expected; instead of the cute boy in Social Studies, it was dance & I was 2. I danced every extra second I had in my days. Whether it be in front of the mirrors of the studio or in my kitchen where I had carefully moved aside the table and chairs to create center stage. I just danced and I loved every second of it. Dance soon became the essence of my life; I lived and breathed only to survive long enough to make it to my dance studio and be able to gasp my next breath.  The world of dance always had this strange effect on me. I was intrigued by its grace and perplexed by its magical and unexplainable ability to make me feel the way it did. It made me feel beautiful. It made me feel graceful. It made me feel alive.
    I continued to dance through-out high school but  in my late-teens/early 20s, I began working, I met & fell in love with Chad, & was going to school full-time. A few years later, we lost my brother & dance became something only in my past. However, fate had a different idea.
     A little over a year before I was diagnosed, I was lucky enough to re-discover my love of dance by coaching a high school dance team. I, very happily, found myself back in the world which I had grown up: sore muscles, tired feet, & exhausted, yet unwavering enthusiasm…but that would all change in April 2010.
    Very soon after diagnosis I made a promise to myself that I would spend the rest of my life, however long that may be, doing anything & everything to educate others about the seriousness of Rectal Cancer. Realizing how naïve I was to the disease prior to a face-to-face introduction, I recognized the best way to do this was to share my story with you, no matter how private or extreme my battle & the details may become.
    Along with dance, writing has always been an emotional outlet for me - so when I was no longer (physically) able to find solace in pirouettes or grand jetés, I found myself choreographing something else: words.
    Shortly after, I began looking into starting an online blog so I could share my thoughts with others, never really expecting it to go further than the people around me. “Goodbye Dancer, Hello Cancer” soon became my very public journal & has been my center stage ever since.
     When I was younger, dance was a way to express myself - to say in motion what I couldn't say in voice. Now my words are my dance; they are tiny steps throughout different combinations of my life.
     Beating cancer was, by far, the very best dance of my life. It made me feel beautiful. It made me feel graceful. It made me feel ALIVE...and as far as I'm concerned, there will never be a final curtain call because that is something to celebrate everyday.

1st recital.