12.25.13

Happy Holidays to all of you who visit GDHC & have become part of my heart over the past year. You give me such strength, encouragement, & always welcome me with open-arms. 

May your day be filled with love, laughs, & memories.

As for me:

love & lyrics,

- LISA -

Family Matters

     I've been trying to write this post for weeks but no matter how long my fingers sat on the keyboard, ultimately, I lost my nerve & intentionally navigated my attention to something else. So, I thought taking some time & a few steps back was a good place to catch a breath of fresh air & then do my damnedest to update you on the craziness that will conclude 2013. 

     If you read my last post, Pieces of Me (Part II), you know it's been a pretty crazy, you've-got-to-be-kidding-me, what-possibly-could-be-next, almost 10ish years for my family. We've literally lost the other-half of us but have somehow remained tightly bound together - don't get me wrong, we're all completely insane, but I think it's safe to say we're an exceptionally strong, united, & close family. So when I got sick it wasn't just me who had to deal with the day-to-day cancer chaos, it was also my husband, my parents, my sister, & even my nephew & niece (who were 7 & 4 at the time &, sadly, know waaay-too-much about cancer) whose lives were also turned upside-down. I had the best of the best of support systems & I wanted to do everything I could to protect any of them from potentially experiencing anything that I was living through so I had genetic-testing for "hereditary nonpolyposis colorectal cancer", also known as "Lynch's Syndrome" shortly after my diagnosis. LS testing is usually done when someone is diagnosed at a young age (26-check!), has not experienced consistent or problematic polyps (never-check!), & the initial cancer is more likely to develop on the right side (my 7 cm tumor was on the right wall - check! 3 for 3!) HOWEVER my results surprisingly came back negative. At the time it was a huge sigh of relief & I remember being so excited knowing that, most likely, no one in my family would have to worry about colorectal cancer, however...I hate having to type this - I was wrong.

     After my last CT scan came back with a few "hmmm's" on my liver, I decided to call my surgeon Dr. B & ask for his interpretation of the results, & realized it was time for my mom's "just-to-be-safe"colonoscopy. She's had no symptoms of any kind to make any of us,nor herself worry so her upcoming scope wasn't something I was really harping on...& boom: of course that's when something happens. During her scope, Dr. B found something "he didn't like" in her sigmoid colon; he took a biospy & we, once-again, found ourselves playing the waiting game for those 3 days to go by for the results. The results had positive malignancy for Colon Cancer.

     I was so angry - not at her or course, or Dr. B, but at life as a whole. Like really? My mom is an amazing human being who's endured things in her lifetime that no one should even have to fathom. No child should have to lose a parent, who was also their best friend, when they are little - my mom did.  No child should have to watch their mother's memory, personality, soul, & eventually body slowly seep away day-by-day from Alzheimer's Disease - my mom did. No parent should ever, ever, ever have to bury a child - my mom has had to bury 2. No parent should have to hear that their child has cancer - my mom did. No person should have to hear they have cancer - my mom did. 

     I suppose the "upside" to all that is my mom is truly the strongest, bravest, most beautiful soul I know. She always tell me what a fighter I am & like so many other things, I obviously inherited a lot of it from her. I remember that through-out my entire battle, she kept telling me "if she could take my cancer from me & put it in her, she would do it in a second", now I'm finding myself bargaining with "God" to do the opposite - I would gladly take these liver lesions & another recurrence for my mom to be cancer-free.

     The "good news", if you will, is that we caught this very early on; her CEA (or tumor marker in her blood) is only around 1.5ish & Dr. B thinks a colon resection should be all that's needed. So that's the game-plan as of now & is set for around the end of the month, ironically on the same day as my follow-up abdomen, pelvic, & head (mostly for the liver "hmmm's") PET scan. So if you pray or would be up for sending love & positivity our way that would be very-much appreciated; perhaps a shortly-delayed Christmas miracle?! :)

     Regardless of either of our outcomes, I promise to keep you on the up-&-up.

Thank you for everything & remember colonoscopies really  do save lives - my mom & I are both proof of that. 

Happy Holidays.

love & lyrics,

-LISA- 

   

     

...btw...

While still focusing on cancer & the countless ways it impacts my daily life, I want to start adding other material to "gdhc", like occasional videos, more pictures, memories,  product "rants & raves", DIY's, & much more! I'm really excited to dive-in & share even more aspects of my life with all of you who have welcomed me & my story in your life. I'm so humbled by your support & encouragement. 

  love & lyrics,

-LISA

Pieces of Me (Part II)

This definitely took me a bit longer to put up than I first expected. Low immune systems don't fair too well with seasonal changes & germs brought home with nieces & nephews.
Alas, here are 10 more things about me & my life that may or may not know.

Here, here, here we go! 

1.) Instead of a "bucket list", I have what I call a "life list" that I keep in my journal; some are potentially do-able while others are insanely out-there but I think it's important to dream big. Here's a peek:
* Take a ballroom dancing class.
* Conquer a ropes course.

.* Visit the Flight 93 memorial in Shanksville, PA & leave a "thank you" card.
*Have a photo session in the rain.
*Write my memoir. 
*Dip my feet in the Pacific ocean.
*Go to a NKOTB concert.
*Collect all Frank Sinatra, Nirvana, & Beatles vinyls.


2.) The 3rd type of chemo I was on for 6 months, Xeloda, completely obliterated my metabolism & thyroid. I gained 14 lbs in less than 7 days & the weight just continued to pile on. After some blood work, we found that my thyroid count was 3 TIMES what it should have been. So, I was diagnosed with "hyperthyroidism". Overall, I gained around 50+lbs  until I topped off at 180. Gaining so much weight in such little time wrecked havoc on my already-achy, weak knees & ankles. I was constantly in excruciating pain & ended up having to use a cane for quite some time, while still continually having to stop & catch my breath. I developed sleep-apnea & my asthma started to flare up. The mental & emotional pain was just as bad; I didn't want to leave the house or have anyone see me. I wouldn't return calls because I didn't want to have to answer truthfully when someone asked how I was doing. Whenever I did muster enough courage to look in the mirror, I didn't recognize the person starring back at me - physically or mentally. I was so lost & felt like another part of me was out of my control. I know that sounds so vain, but I really felt even more disconnected to who I was BC (before cancer). It wasn't until fairly recently that my body finally began to recover enough to the point where I am beginning to drop my chemo pounds; so far I've lost about 30ish-some pounds & I'm feeling more like BC Lisa (inside & out) than I have in a really, really long time.


3.) We planned our wedding in about 2 & 1/2 weeks. After Chad & I got engaged in January 2008 we initially planned to get married in May 2009 but as things do, that changed. In early 2009 we opted for a small wedding on January 31st which just happened to be the anniversary of our very first date five years before. We're from an extremely small town, so it was inevitable that the "is she??, isn't she??" talk made it's rounds. The truth is that  I couldn't imagine having a big wedding without my big brothers so we kept it simple & intimate. (Shout-out to my mom, Mary, for being the best wedding planner ever!)

*BONUS Random - because we had lost both my brothers, Chad was so amazing that he took our last name in hopes that our child (which unbeknownst to us at the time, will be our one-day adopted child) could carry on the Johnson name, so we became "Mr. & Mrs. Chad & Lisa Johnson".

4.) I can't even estimate how many numbers I performed during my 17+ years of dance. However, my favorite - by far - was portraying "Tinkerbell" in 5th Street Dance Company's "Adventures of Peter Pan" when I was 15. 

5.) I'm obviously very open about sharing my stories about cancer & life, however I'm incredibly protective of the poetry I write. It safely stays in my journal for my eyes only.   


6.) I love showing my cancer warpaint by coloring parts of my hair royal blue (the ribbon color for Colorectal Cancer). It gives me such a sense of empowerment & pride. I love explaining the reason behind it when someone asks about it. The first go'round my mom, my older sister Barb, my nephew Brian, & my niece Brea (who where 8 & 5 at the time) also rocked blue in their hair for me. Eventually I want to get a "CRC star" tattoo but I'm giving my immune system the much-needed time to recover. So, until then, I'm perfectly content with my blue locks.

7.) I am a HUGE, like really huge, John Cusack fan. He's, without a doubt, my absolute favorite actor of all-time. Not only is he insanely talented but he's also an intelligent, politically passionate man who, let's be honest here, is agelessly gorgeous. (no comparison to you Chad - I love you boo!). There is no denying the fact the he is a terrific actor - how many hearts did he melt as Lloyd Dobler in "Say Anything"?! I don't think it's possible to hear "In Your Eyes" by Peter Gabriel & not have this image pop into your head:

It's definitely an iconic 80's movie-moment.

*My favorite, all-time, JC movie is, fo sho,"High Fidelity" which I could watch over & over. 

*"Martian Child" was epic, "Grace is Gone" literally made my heart ache, "Serendipity" instilled in me 1 of my all-time favorite quotes:"Life is not merely a series of meaningless accidents or coincidences, but rather, it's a tapestry of events that culminate in an exquisite sublime plan", & he scared the bajebus out of me in thrillers like "Identity", "1408", "The Paperboy", & "The Frozen Ground". I really could go on & on but I think you get my point. I'm forever a fan. Siiiiggghhh. ;)

8.) My favorite musician, aside from my girl T.Swift, is a Canadian-based, independent artist named Alexz Johnson. I first came across her ridiciously amazing (and I only say ridiciously when I reallllly mean it) voice on a show called "Instant Star" in 2004. Her voice is complete magic. "Look At Those Eyes" quickly became my theme song after diagnosis & her albums, "Voodoo" & "Skipping Stone" became an awesome soundtrack for the unpredictableness of everyday. Here are few of my AJ favorites:

9.) I have a Bachelor's Degree in Psychology & an Associate's Degree in Criminal Justice. I graduated from Fairmont State University in May 2009 (after taking a few non-consecutive semesters off after losing my brothers) & was offered the dance coaching job right around the same time. The "plan" was to coach for a year & then start looking for a job in the "real world". Well, the real world smacked me upside the head when I was diagnosed with cancer 9 months later, but at least my diploma looks pretty.

10.) I've lost 5 of the most important people in my life since 2004.
On August 28, 2004 My 24-year-old brother, John, & his fiance, Leslie, both passed away of smoke & soot inhalation in a house fire; every room was completely destroyed except for their bedroom; they didn't have a single burn on either of them. They were crazy in love & were so excited to spend the rest of their lives together; now they are forever together.

A little over 2 years later (28 months actually) on December 07, 2006, my 32-year-old brother James passed away unexpectedly from "acute brocho-pneumonia" that had became septic & entered his blood-stream. He had been experiencing flu-like symptoms for a few days & had promised to go to the doctor that day. Jay, as we called him, was a magnificent father who loved spending time with his "little bit" Emma. He was so funny, charismatic, sarcastic, an self-admittingly charming. :)

A little over 2 years after that (again 28 months later - I know, freaky, right?) on April 19, 2008 we lost my Gram (or GG for "great-grandmom") after a long, exhausting, awful battle with Alzheimer's. Gram was the most loving lady in the world & seemed to become more beautiful which each passing year. I remember when I was little watching her roll her hair in little buns all over her head every night before bed so she would have curls in the morning. I will never forget her laugh -  she had the best laugh.

The day after my 2nd surgery the lasted 8 & 1/2 hours - September 23, 2011 my "mom & dad #2" (who's late daughter I was named after) were in a freak car accident on the interstate heading home after coming to Pittsburgh with us the day before to be by my side, as they always were. Sis passed away immediately on scene while Jim was flown to the trauma hospital in Pittsburgh. He lived for 10 more days & passed away on October 2, 2011, exactly 1 day after I came home safe & sound from my surgery. I know he waited for me. Their deaths are the one I have the most trouble with; a small part of me will always feel guilty. 

{Top row, from left to right: John, Jay, Gram, Jim & Sis}
I miss them all beyond words can explain, so much it physically hurts me. The only comfort I can find in losing them is that they are all together; they're my family in Heaven - my angels. I'm not a super religious person but I do say prayers at night & I always end by talking to them, sometimes one-by-one, other times all-together.
How lucky I was to love & be loved by all of them.

I hope you guys are enjoying getting a look at the various aspects of my life because, at the end of the day, I have a pretty amazing life. I'm loved, healthy, sarcastic, happy, & stronger than I would have ever imagined.


love & lyrics, 

- LISA -

GDHC

"Pieces of Me" (Part II) coming SOON!

 See ya then! 

My Point of VIEW

     My heart is hurt so much right now. Today on The View, Mario Cantone made a disgusting comment about his pants being so baggy it looked like he had a colostomy bag. The View girls helped me through my battle after I was diagnosed with Stage III Rectal Cancer on April 28, 2010 when I was 26. I tuned in everyday, whether I was home, in the hospital, or in treatment. 3 years later, 3 different chemo regimens, 28 pelvic radiation hits, 2 major surgeries: 2010 - complete 7cm tumor resection, complete rectal resection, & *permanent* colostomy. 2011-tumor resection, coccyx removal, complete hysterectomy, complete vaginectomy, & external pelvic reconstruction I'm alive & thriving because of my colostomy. Mario Cantone's joke was tasteless, offensive, & personal. I, along with so many other brave warriors, fight the stigmas of Colorectal Cancer & colostomys on an everyday basis.

Insomnia Inspirations

I love the random shenanigans you can come across during an insomniatic (...wait, is that an actual word or did I just make that up?) episode, so I thought I would drop some of it off here; afterall, can't we all enjoy a little insomnia inspiration every once in a while? Hope you enjoy or, better yet, are a normal human being who's body knows when it should be resting.
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“There's always light after the dark. You have to go through that dark place to get to it, but it's there, waiting for you. It's like riding on a train through a dark tunnel. If you get so scared you jump off in the middle of the ride, then you're there, in the tunnel, stuck in the dark. You have to ride the train all the way to the end of the ride.”
- Han Nolan, Dancing on the Edge

“The only way that we can live, is if we grow. The only way that we can grow is if we change. The only way that we can change is if we learn. The only way we can learn is if we are exposed. And the only way that we can become exposed is if we throw ourselves out into the open. Do it. Throw yourself.” - C. Joybell C.

“I have come to accept the feeling of not knowing where I am going. And I have trained myself to love it. Because it is only when we are suspended in mid-air with no landing in sight, that we force our wings to unravel and alas begin our flight. And as we fly, we still may not know where we are going to. But the miracle is in the unfolding of the wings. You may not know where you're going, but you know that so long as you spread your wings, the winds will carry you.” - C. Joybell C.

Pieces Of Me (Part I)

     Since I had a fairly emotional past few weeks with a lingering CT, masses, & liver "what if's" (side-note: as of now, these very, very small lesions are nothing to worry about; my next scan is scheduled for the end of December & we'll also have the chance to meet with the liver specialist to check in - no worries), I wanted to do something a little different. Something I hope will bring the fun back to this part of e-town & also give you a look at my life from a different perspective. As I've said before, cancer is a HUGE part of my life but it by no means defines it. So, without further ado & in no significant order, here are 10 things (to start off with) you may OR may not know about me. A'letsgo! 

1.) I get asked fairly frequently where the name "Goodbye Dancer, Hello Cancer" came from so I thought what better FYI to start off with. Initially it was pretty cut & dry; I was a coach & choreographer for a local high school dance team at the time I was diagnosed so I literally had to say goodbye to the physical aspect of dance & hello to the billion different aspects of cancer.  Once I found myself submerged in the cancer world, I realized the title had much more meaning than just the obvious. When dance found its way back to me through coaching, I was able to rediscover the trance it so effortlessly put me in. I thought my future, career-wise at least, was in the world of dance but, as it so often does, life had other plans. I'm a strong believer that everything happens for a reason so I have to believe this disease was brought into my life for a reason. My passion is fighting this dragon called cancer. My passion is giving the hopeless hope, the faithless faith, & the comfortless comfort. I used to dream of a world full of dance; now I dream of a world deplete of cancer. 

  2.) My "security blanket" as a child wasn't a blanket at all, instead I had a "stuffed" (so they say!) bunny who I brilliantly named "Bun-Bun" & he became my first-ever BFF. Everywhere I went, he went. He was my ever-ready play buddy & confidant. We were so attached that my mom used to have to sneak him out of my crib while I was napping to run him through the washing machine (don't worry guys, he's a GREAT swimmer!) & have him back at my side before I woke up & had a toddler panic attack from Bun-Bun separation anxiety. These days, 29 years later, I still have Bun-Bun & he is still my every-ready friend. He may not be much to look at these days but Bun-Bun will always have my heart.

Oh & in case the pictures didn't give it away - I was quite the thumb sucker. :)

  

3.) If I don't keep my nails painted a dark color (which is usually my favorite black "Onyx" shade by OPI) or have artificial nails, I'm a habitual nail/cuticle picker.

4.) I save my hospital bracelets & write down a few words on them to remember what had happened that day, like blood labs or scans - you get me. I actually didn't start saving them until my recurrence in 2011 but I think its safe to say I have my fair share.

5.) After my now 10-yr-old nephew, Brian, began talking as a toddler he "assigned" names to all of us. I expected to be Auntie Lisa but, somehow, my first "title", if you will, was "Dah-Dah", which quickly evolved into "LaLa", which I still am until this very day. Bonus Random- Chad's family name is "Puncle" for 2 reasons: (1.) Brian couldn't pronounce the word "uncle" & (2.)Chad was a "pretend" uncle because we were only dating at the time. "Puncle" has somehow shortened to "Punc" which probably sounds incredibly obnoxious to strangers when they hear Brian, Emma, or Brea say "Hey Punc!" to Chad in public but it's really a name of adoration. :)

6.) We all know I'm a medical freak-of-nature, but did you know I have "idiocentric chemical reaction" to medications? Basically what it means is that meds that would usually make you tired, relaxed, zen, what-have-you, make me ridiculously awake & productive whereas on the other hand, super-caffeinated drinks (like coffee & Redbull) make me ridiculously tired & useless. As for actual sleep meds, prescribed & over-the-counter, nope! It's like taking a placebo, they do nothing for me. 

7.) I have a confession to make. I'm absolutely, without-a-doubt, 100%, head-over-heels, to-the-moon-&-back-in love with........e.l.f. cosmetics! I'm a total fan girl & proud of it! I love experimenting with their newest products & relying on my "ol' faithfuls" for casual everyday looks. The best part? They're a cruelty-free brand with a HUGE selection of *paraben-free* products, including an entire mineral line. So if you ever want to know the way into my heart, it's with e.l.f.! Did I mention how ridiculously affordable this line is? Brushes & actual makeup pieces start at $1. Cosmetic craziness! Oh...& in my defense, all of the makeup in the picture below was definitely not purchased at 1 time; it's been an ongoing love affair for quite some time. 

8.) You know I love Fall so naturally I also love HALLOWEEN! My favorite, all-time, forever favorite costume was Halloween 2007 when Chad & I were "Hulk & Linda Hogan" - Hulkamainia, brother! 

The real "Terry & Linda" divorced about a year later but we had so much fun with these costumes! Chad was dedicated - he grew out his beard, which we originally attempted to use hair dye to go blonde, but didn't think about having to strip his facial hair of it's natural color first. Yes, 2 college graduates with 0 common sense. The hair dye actually ended up giving him a chemical burn around his mouth (that shows til this day) so we eventually ended up going with a yellow Halloween spray color that turned neon.  Still awesome! 

9.) You know how you can have your cell phone contacts automatically transferred over to a new phone when you purchase it? Well, my brother Jay's number was been transferring from phone-to-phone-to-phone of mine since he passed away from acute bronchpneumonia in 2006, however it's only the 7-digit number because it was before the area-code had to be entered before the number. So, occasionally, if I'm feeling out-of-sorts & feel like I need to reconnect with my big brother, I text him; usually something short like "I miss you". Of course it just sends the message directly back to me but I think being able to psychically see my words being sent to him is comforting.

10.) I'm OBSESSED with F.R.I.E.N.D.S! Yes, that FRIENDS. I began watching it occasionally in May & just happened to catch it in sequential order on Nick@Nite, so I thought, why not?  Somewhere along the way I got Chad into it with me & we began watching it pretty much every night before we went to bed. That turned into buying the complete series (another side-note : shout-out to Walmart for having 2 seasons in 1 box for 1 price! Nice!) & having "date nights" every night to watch our 6 favorite NY'ers. Yes, I know it's like 20 years after it premiered but I am just loyally finding it now. We do A LOT of laughing, rewinding, & I think it's safe to say we're pretty damn close to knowing episodes line-by-line. Oh, & I must say that Phoebe Buffay is absolutely 1 of the best-created TV characters of all time; I'm constantly throw-out "Phoebe-ism's"!

Part 2 coming soon.

Lots of love,

- LISA -

Over, Around, & Under

     Well, hello there. Happy September! I'm not exactly sure where summer went but alls well with me because it is my absolute favorite season. Boots, beanies, brilliant colors, & college football? Why, yes thank you! Plus, when you have a standard body temperature of at least 1000 degrees, you *always* welcome a cooler climate.
     Scrolling back a little bit - August 28th marked 9 years since my big brother, John David Johnson, became an angel. He was 24-years-old when he, and his girlfriend Leslie, passed away from smoke inhalation after an electrical fire...you get the point. Reliving that day & the days that followed literally makes my hands shake so I want to deter from that &, instead, tell you about the amazing brother I had for 20 years. 
     John had a heart of gold. He would (& actually did once) give someone every last dime he had. He had a contagious laugh that would make you laugh even on your darkest days. He was so absolutely in love with Leslie & loved her 3 children like his very own - they called him "Papa John" & he took that title extremely serious. He was a fantastic father even though he never had the chance to have his own biological children. My brother was so passionate about life - he knew in order to find the true strength of your soul you would have to find the way over, around, or through some roadblocks that stood in your way & he never shied away when it came to sharing his life lessons with me...even if it was 4am & I had an 8 o'clock class. I can't put into words how much I miss those "heart-to"hearts" I shared with my big brother. I miss him, I love him, & I know he is watching me from the sky.

John David Johnson

April 29, 1980 - August 28, 2004

I love you more. <3

Ok, deep breath...moving on - I had my annual colonoscopy a few weeks ago & I'm SO happy to let you know all is well! Dr. B said things look great & that it's safe to move my scopes to every 2 years unless we start to suspect something is off kilter. Speaking of colonoscopies...have YOU had one? I can't stress enough how incredibly vital they are; CRC is on the rise & early detection is key. It literally takes 30 minutes & you get to meet my good friend, Mr. Propopol, who is quite a guy. ;) 

September also means that my CT scan is only weeks away! Ah, scanxiety attack! It's not so much the scan itself that scares me - I'm actually freakishly comfortable underneath a CT, MRI, & PET scanner - it's the impending results that give me goosebumps (oh! is it goosebumps or goose pimples?? Goosepimples? I don't get it). Until then, I'm just going to keep living life, doing my best to navigate MY way over, around, & through the roadblocks that may come my way. 

Cheers,

- LISA -

"Cancer Cloud"

     The "cancer cloud", as I like to call it, seems to drift back on my radar every-so-often & when it does, it has the potential to become pretty intense & absolutely overwhelming. This time, I knew I needed to take a step back from the "e-world" for a bit & try to figure out what was going on in my head. 
     When it comes to the physical aspects of my journey, it's incredibly easy to be an open-book - from diagnosis to treatment, from surgery details to remission - you ask, I tell. Hell, even if you don't ask, I still tell ;). However, all-too-often it's so much easier to shy away from the emotional & mental sides of life post-cancer & it took some time for me to realize that this "cloud" I'm so familiar with is actually just another part of my journey. So, during the last few weeks I've been trying to figure out how to best explain the inner Lisa like I do the outer Lisa. Ready? Let's roll.
     I think it all started with my unexpected chest-port removal; I explained earlier how I had planned to leave it in until the 5-year "clinically cured" mark but because of an internal blockage it had to be removed. It was most definitely a security blanket for me; always ever-ready if I had another recurrence & needed treatment again. Cancer is a crazy, chaotic, uncontrollable beast & having my port gave me a small sense of control; it allowed me to feel one-step ahead of the beast. Having to say goodbye to the one, tangible thing that I had a loose-sense of control over made me feel a little crazy & chaotic. I know, it sounds ridiculous but I promise it made complete sense in my head. 
     In the past month I've also had a few important appointments made for the near future for my annual colonoscopy & my "6-month" scan where I will find out if there are any new cancer cells living in my body. That's a very scary thought &, unfortunately, it's a very scary thought that has become all-too-real in the last three years & will remain in our life for at least four more years. Having these new appointments also instantaneously throws my mind back to 2010 when in less than a week from my realizing my symptoms were actually something serious, to my first colonoscopy, which lead to a biopsy, which lead to a diagnosis of Stage III Rectal Cancer. Our life changed so quickly, so unexpectedly that it's frightening to think in the next few months we either could be: A.) right there again or B.) breathing a very deeeeeep sigh of relief & continuing to navigate our "new normal" life as best as we can. It's very much a "learn as you go" new kind-of life; aspects you don't really give much thought to during treatment because of the "bigger picture" start to trickle back to into mind & start raising their hands while shouting "hey you, remember me?!" 
     Radiation is not meant to be a friendly force; it's job is to attack whatever it may be aligned with &, in my case, it was my pelvis, which included my uterus & ovaries, which was attacked a total of 28 times during May & June of 2010. After my recurrence in July 2011, it was a no-brainer that, along with the new tumor & surrounding cancerous tissue, I would be having a complete hysterectomy (& unbeknownst at that time, a complete vaginectomy & pelvic reconstruction to boot!) when I was 27. Of course I understood this meant I would never be able to have children & at that time, it didn't matter - I was going to do whatever I had to do in order to live. Now, in retrospect because I did live, I'm able to look back and think "wow, this aches a little more than I thought it would" in reference to Chad & I being able to have a family. It's almost a fortunately, unfortunate situation if that makes sense. Now, I'm 29...I'm at that point where I look around & everyone my age is starting to begin or  even expand their families while Chad & I are still watching from the sidelines trying to steady the ground beneath our feet. I never thought my heart would feel like this & to be honest I hate that it does. I get so angry at myself that I get upset about not being able to have children because I have my LIFE & statistically, I probably shouldn't. So I have this tug-a-war between my head & my heart & logical versus illogical all at the same time. Again, I know it sounds ridiculous but I promise it really does make complete sense in my head. 
     So...that is some of what I was trying to juggle under the"cancer cloud". I knew I needed to step back, spend time with Chad, re-recognize how ridiculously fortunate I am & realize that maybe I don't have to juggle at all because the truth is, I don't. What I've learned recently is that its ok to carry all aspects of my journey, my past, & my unknown future in my arms because like cancer, life is crazy, chaotic, & uncontrollable. And if what I'm carrying may overlap my arms, well I have a few pretty fantastic people around me to pick up what I may be dragging. 

- LISA - 

    

"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.