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.