Monday, December 28, 2015

#MyOstomyStory (The Story Behind the Story)

     At the end of October I posted the above photo on my Facebook page & my Instagram account with the following caption:
"Never, EVER did I think I would post a picture like this but alas here we go...‪#‎MyOstomyStory‬ began on August 19, 2010 - 4 months after I was diagnosed with Stage IIIb Rectal Cancer at age 26. I was a recent college grad & a full-time dance coach. The 1st time I heard the words "permanent colostomy" I thought my life was over, little did I know the one thing that would GIVE me life was my ostomy. 5 years, 3 chemo regimens, 28 pelvic radiation hits, & 2 major surgeries I am, still very much alive & still dancing my way through this crazy world. Cancer may have tried to take my life & my body...but it never stood a chance against my spirit."
     I've been so incredibly overwhelmed by all the love & support I've received since posting my ostomy picture that I thought it would be fun to share the details behind the photo & let you know what exactly made me decide to share my story & my body with the world wide web...because it was definitely something very much outside of my comfort zone. So, a'let's go!
     In late October I realized that Uncover Ostomy was running a "#MyOstomyStory"campaign for any & all ostomates willing to share their story. UO is an super-cool organization that was started by a fellow young ostomate (Jessica Grossman) & it's primary focus is breaking stereotypes that linger behind having an ostomy - cause believe me, even though it's almost 2016 there are still a TON of stigmas & misconceptions about living with an ostomy, especially as a young adult. Taking those misconceptions into consideration as well as to how "normal" my life post-colostomy actually is I knew immediately I wanted to be a part of this campaign. However there was a catch: as easy as it is for me to bare my soul to the world, baring my body is a completely different story. I've been pretty open about my struggle with body image since my 70+lb cancer weight gain & it's been a long road to get to a point of feeling comfortable within my own skin again. In case you don't remember or weren't around these parts back then, have no fear! I got you.
Yup, that's me with 2 of my beautiful best friends, & Ashley & Natalie (hey girls! LY!)
     Before cancer & my now ever-present premature menopause, I never had to worry about my weight so learning to navigate the worlds of diet & exercise, as well as figuring out how to maneuver a body with no hormone production was definitely a tricky situation that had me a hot-mess for a quite a while. It would literally take me years to get myself under control - both physically & mentally. Eventually however (after a looooot of trial-&-error), I was slowly able to figure out what specifically worked for me & began to feel more comfortable in my own body. I was starting to become "me" again - just a slightly different, more life-experienced me. After a ridiculous amount of research, I decided to begin taking non-estrogen, soy-based pseudo-hormones which helped me rediscover my metabolism & I slowly began losing the lbs. Does this mean I'm now 100% comfortable in my skin & in my body? Hell NO but that's not because I have an's because I'm human. Over the summer I reached another pretty big milestone: I returned to the world of ballet which is something for a really long time I was fairly certain wasn't physically possible but I did it! (oh, btw I guess I should tell you that I also had a large part of my inner left thigh muscles removed & used for external pelvic reconstruction back in 2011). Does my body move or cooperate like it did before cancer? That's another hell no...neither does my brain but I took back something I thought cancer forever took from me & I think that is actually PRETTY RAD!
     The final factor that helped me decide to be part of this campaign was my ostomy itself. I was first told I was would need a permanent colostomy about a week or so after I was diagnosed. I remember my doctor saying the word "colostomy" for the first time & hearing it echo over & over in my head. There I was sitting in my surgeon's office knowing that I had advanced, aggressive cancer & all I could think was "oh my gawd - I'm going to have to have colostomy bag...forever. What the hell am I doing to do?! My life is OVER!".  Like I said earlier there are SO many stigmas, misconceptions, & stereotypes that come along with having an ostomy & at that very moment, I bought into each & every one of them. I was terrified but was then was given 2 options by my doctor: 1.) have a colostomy & live or 2.) decide not to have a colostomy & die. Um...NO decision to be made! Let's ostomy me up real nice doc! 4 months later, after a complete tumor & rectal resection, I had my colostomy fixed to my lower left abdomen & very quickly learned the truth of being a living, breathing ostomate. No, I am not dirty. No, I do not smell. No, my life is NOT over & is not that different than your's. My life is very-much normal & that is because of my colostomy; it gave me the chance to continue to live. It gave me the chance to see past age 26 & be able fight my ass off against Rectal Cancer. I don't find any shame or embarrassment in that; it's actually kind of liberating! There is something satisfying in seeing someone's reaction when they find out that I have a not-so-secret ostomy hidden beneath my shirt. They don't think I'm dirty. They don't think I smell. They don't think my life is all that different from their's because it's not. I'm as normal as you can be without being normal at all. ;) I'm just like you: I wake up everyday & try my best to navigate my way through this crazy world & this is what my photo is all about. It's about baring my reality to a world that is filled with other people who are dancing their own way through the ups & downs of life. We all have different situations & different circumstances surrounding us that we have to figure out how to deal with. We all have our own issues that bully their way into our lives & adjusting to this giant curve-ball called cancer in my mid-20s was part of mine. Nothing more, nothing less. There really is no difference between you & I...except I don't have to worry about public restrooms anymore. :)

(I was actually just really excited to wear this lipstick!)

til next time,

Sunday, November 1, 2015


The story behind this very personal photo is coming soon until then please take a moment to check out 

See you soon.
- LISA -

Thursday, October 1, 2015

October 2k15

October is Breast Cancer Awareness Month...butt let's remember to protect ALL of our assests!
Colonoscopys save lives - it saved mine!

- LISA -

Friday, August 28, 2015

Dear John

 Dear John,
     I can't believe it's been 11 years...11 years since I last heard your voice, caught your contagious laughter, or have been able to hug you. I'll never forget that day because that was the day that my life changed forever. For the first 20 years of my life I was alive but not necessarily "living" because I didn't realize how fragile life truly was until Saturday August 28, 2004.
     I remember driving home the night before & thinking how perfectly full the moon was. I remember thinking how beautifully it lit up the late-night sky & how it shined down so brightly on the world beneath it; little did I know how much that world would change in the matter of hours. Losing you was, without-a-doubt, harder than I could have ever, ever imagined. I thought I had my heart broken before, but no...saying goodbye to you, big brother, was a heartbreak I never knew existed.
     I try not to haunt myself with thoughts of that morning but, inevitably, they always seem to creep back into my head. I wonder if you were you scared or if you knew what was happening. I wonder what your last words might have been - knowing you I'm sure they were words Mom wouldn't approve of. :) I know you were probably more concerned with getting Leslie out of the house than you were with yourself; you loved her so much, as she loved you. I will never forget your last Christmas when you surprised her with her beautiful bracelet & made her cry. You made her feel so special & so loved...I'm so happy you found true love while on this Earth. That Christmas is hands-down my favorite holiday memory even though it would be the last one we would all spend together. When I look back at that version of "me" in the pictures I can't help but miss being that naive 19-year-old in the navy blue dance sweatshirt. Everything about me changed when I lost you & almost 11 years later I'm still trying to pick up the pieces & find my way in this crazy life. It seems like every time I was about to pull things together, something else would wreck our losing Jay only 2 years after you. We have amazing parents, don't we? There's not a lot of things I truly "know" in this life, but 1 thing I do know is that no parent should EVER have to bury their child & our's did...twice. They're incredible & I don't think I will ever understand where they find all their strength. They miss you so much. I know their lives changed in more ways than mine that morning & I often find myself just starring at them in awe. How blessed we are to call them our's.
     Thank you for loaning Duke to us for the last 11 years. Who knew that big, awkward puppy hiding in his doghouse would end up being the biggest inside fur-baby we've ever had? did, I guess. I think you must have known how much we would need him. For me, he was the last tangible part of you so letting him go has been really hard. I miss him so much already but I can only imagine how excited he was to see you again. I would often talk to him about you; telling him stories would make me feel closer to you somehow. Man how I miss those talks. Oh, by the way, the orange ball is his favorite so please be sure to throw that as hard & as far as you can - that back leg won't be holding him back in the clouds.
     I'll never forget what happened in the early hours of August 28, 2004. You were taken from this world much too early for my liking or my approval & I struggle with your absence everyday. You were an incredible big brother & I hate that I didn't tell you that nearly enough. I hope you know how much I love you & how much I miss you because...well, I can't find a way to put it into words. All I can say is that I do love you & I do miss you so, so very much. Thank you for blessing us with your presence for 24 beautiful years.
You are forever in my heart, my head, & my soul.
Until we meet again.
Rest Easy.

Your baby sister,

John David Johnson
April 29, 1980 - August 28, 2004



Sunday, August 2, 2015

Sunday Randomness

     Since my last post was pretty heavy,  I thought I would lighten things up around GDHC with something fun...& different. If you've been hanging out here with me for a minute, then you know a few things about me. You know I'm a cancer survivor, a former dancer, & a proud, permanent ostomate but there's a lot more to me. I love music, make-up, movies & countless other things that don't necessarily begin with the letter "m", contrary to what that previous list may have lead you to believe. So, here are some incredibly random Q's with my equally as random A's.

  • Full name? Lisa Marie Johnson
  • Are you named after anyone? Yes, my cousin Lisa Marie Wright who passed away from chronic asthma a few weeks shy of her 16th birthday in the early 80's.
  • What's your favorite sport to watch? College's serious business.
  • Favorite movies? High Fidelity, Say Anything, True Romance, Almost Famous, Dogfight, Across The Universe, The Fault In Our Stars....I could go on & on & on & on....
  • Last song you listened to? "And I Love Her" by The Beatles
  • Last movie you watched in a theater? Vacation
  • Do you have a favorite city? Wilmington, NC will always have my heart. 
  • Do you wear your seat belt in the car? Faithfully.
  • What did you have for breakfast today? Coffee
  • Favorite bands/musicians? Nirvana, Alexz Johnson, The Beatles, Frank Sinatra, DMB, The Doors, Bob Dylan
  • How tall are you? 5'0
  • What's one word to describe your personality? Sarcastic
  • What's something on your bucket list? For the record, I like to call it my "life list" {which you can check out in it's entirety in the tab above} but I would LOVE to complete a ropes course...however, I have absolutely NO idea how or where you would find them.
  • Do you believe in yourself? For the most part, but I think we all have insecurities.
  • Where did you go to on your last road trip? Pittsburgh, PA for the "Soaked In Bleach" screening.
  • Do you have a "life anthem" song? "Nothin' On Me" by Alexz Johnson
  • Favorite TV shows? LOST, Dawson's Creek, Friends
  • What is your favorite season? Fall
  • Last restaurant you went to? Chili's
  • Are you right handed or left handed? I'm a righty.
  • Do you wear glasses/contacts? Oh yeah...I'd be blind without them.
  • Do you believe in soulmates? Absolutely
  • Do you have any siblings? Yes...2 older brothers who are in Heaven & 1 older sister who, thankfully, is still down here with me. :)
  • What's your favorite hobby? Writing
  • Do you think friends can grow apart? I know they can.
  • What was the last thing you had to drink? Coke Zero...mmm...
  • Do you still have your tonsils & appendix? Nope...neither actually.
  • Iphone or android? I'm an android girl.
  • What DVD is in your DVD player right now? Friends
  • Do you have any scars, if so where? Haha, this question made me laugh. I definitely have my fair share: appendix (lower right abdomen), hysterectomy (from right below my belly button down to my pelvic bone), my chest port (top right of my chest), & on my inner left thigh (like from hip to kneecap) from my external pelvic reconstruction.
  • Do you have any tattoos? Only my radiation if those count, then I have 3. ;)
  • Do you like ice in your drinks? No! I'm completely weird when it comes to ice...just not a fan.
  • Would you rather be able to fly for a day or be invisible for a day? Fly, for sure.

Wednesday, July 29, 2015

Words to Live By...

Sometimes I'm lucky enough to come across something that really resonates with me & lately I have been loving the work of Mary Oliver, who is an incredible American poet.

- Mary Oliver
(PART 3)

I know, you never intended to be in this world.
But you’re in it all the same.

So why not get started immediately.

I mean, belonging to it.
There is so much to admire, to weep over.

And to write music or poems about.

Bless the feet that take you to and fro.
Bless the eyes and the listening ears.
Bless the tongue, the marvel of taste.
Bless touching.

You could live a hundred years, it’s happened.
Or not.
I am speaking from the fortunate platform
of many years,
none of which, I think, I ever wasted.
Do you need a prod?
Do you need a little darkness to get you going?
Let me be as urgent as a knife, then,
and remind you of Keats,
so single of purpose and thinking, for a while,
he had a lifetime.

Wednesday, July 22, 2015


     I've been debating back-&-forth with myself for quite awhiiiiiiile trying to make a decision as to whether or not to tackle this specific topic & it all came down to 1 thing: the promise I made myself after diagnosis to share my entire story - both good & bad - with anyone who would be interested in hearing/reading about it. So, in keeping with that promise I want to talk about a place I found myself once I was out of the malignant-zone & entering the fight after the fight. It's life post-cancer & it can be full of what I like to call "remissues" {remission + issues}. 
Before I begin,  please remember that these are solely MY opinions, MY experiences, & MY thoughts and that they - by no means - reflect any other person in the cancer survivor community...just little ol' me. 

     In my opinion, being a cancer survivor can be a tricky title to hold; I'm so, so very grateful, blessed, & down-right-lucky to be alive. Not a day goes by that I don't recognize how incredibly fortunate I am & have been over the past 5 years. However, on the other side of the post-cancer spectrum, I am an entirely different person than I was up until the very second before I received my diagnosis. Suddenly I went from being a "normal" mid-20's woman to a full-time cancer patient fighting for my life & facing less than a 25% survival expectancy. Life quickly became all about appointments, treatments, side-effects, surgeries, healing, fighting, & meds - lots & lots of meds. Two years after initially being diagnosed I heard the most beautiful of all words: remission. To be definitive, remission is described as "a decrease in or disappearance of signs & symptoms of cancer" (source). Before I became a member of the cancer club I always imagined the term "remission" as almost an abracadabra word. Like at the very second someone hears that word, POOF!!! Cue the happy music, unicorns, fireworks, & all-things-sunshine! I thought the word "remission" must instantaneously make everything magical & that one's life would, undoubtedly, return back to how it was pre-diagnosis. Insert self forehead-smack here because I was completely & utterly, all-sorts of incorrect. 
     One last time, please let me reiterate how appreciative I am to be in remission & to have been given another chance in this life; however that appreciation doesn't mean I'm not allowed to have other issues in my life...& these, my friends, are what I like to call "remissues" {remission + issues = remissues}. 
     For me, my remissues can range anywhere from survivor's guilt, identity confusion, & figuring out how to manage my countless physical side-effects to anxiety, post-cancer depression, mood swings, menopause, & pretty much any & every emotion in between. I think what I have discovered is that when you're actually "in" the midst of your battle, you're in an entirely different least I know I was. I was in warrior mode - I was ready & willing to do anything necessary to save my life. That meant that any surgery or treatment that was suggested or recommended I was ABSOLUTELY game for - no questions asked or eff's given. I have to carry around a fanny-pack attached to a chemo pump which then attaches to my port 24/7, 5 days a week for 6 weeks? Done! Rectal resection, permanent colostomy, & pelvic radiation that will leave me sterile at age 26? Hell yeah! Complete hysterectomy by 27? Sign me up! You want to removal my tumor, lymph nodes, coccyx, & vaginal canal in the same surgery...rad, let's do it. No possibility of internal pelvic reconstruction for at least 5 years? big deal, I'm in. You want to take my right arm & attach it to my big toe? What are we waiting for?! OK, maybe that last scenario is a bit of a stretch but I think you know what I'm getting at. When you're battling & fighting for your life, you will do whatever you have to do to make it to tomorrow. You don't have the luxury to sit back & think "I wonder when I look back on this how I will react or how it will make me feel 1, 2, 3 or more years from now" because with cancer you can never get comfortable enough to envision 1, 2, 3 or more years from your now. So, for me, after the initial remission fairy dust finally settled I found myself at a standstill. I was all possible ways a person can be lost. I didn't - & sometimes still don't - know what to do with my days. For years, my life was carefully mapped out by radiation & chemo appointments or constructed around visits to the cancer center for blood work, visits with Dr. K, or varying maintenance scans. It seemed like the next surgery was always looming right around the corner. I got as comfortable as I could in a completely uncomfortable situation. I knew how chemo was going to make me feel, I knew how much surgery would kick my ass, & I knew how to fight - this had become my "normal". So when all that disappeared I found myself saying "OK, awesome...but now what???". I knew I couldn't just return back to the life I had before cancer because that wasn't my life anymore & I wasn't that version of me anymore. I was - mentally & physically - a very different Lisa than the one who had once lived that prior life. The "new" Lisa was a 2x cancer survivor who had spent the last 2 years fighting hell on Earth...but that was pretty much all I knew about her & that was an incredibly scary realization.
     Since then, I've spent the last 3 years trying to figure out who I am, where, & exactly why I belong in this world. This constant struggle of trying to re-find myself & what to do in & with my life post-cancer is something that can quickly snowball & often begins to bleed into other aspects of my survivor's guilt (SG) & survivor's pressure (SP). SG is actually relatively common in cancer survivors, especially young adults. It may sound crazy to some that cancer survivors can & do experience SG because that is term usually associated with war or another significant tragedy but if you really think about it, both of those terms describe life in the cancersphere. We are fighting our own type of war & our own type of tragedy. For me, when it comes down to it, I have no idea why I am here & other warriors who faced my same diagnosis aren''s something that is always on my mind but it's also something that I know I will never have the answer to - so all I can do is try to live my best life, not only for myself but for those who are no longer here &, honestly, that - in itself - can be a fairly daunting expectation that I place on myself. 
     Next I have what I like to refer to as "survivor's pressure", which has it's own range of various emotional aspects attached to it. Referring back to knowing that I - for whatever reason - survived this disease is completely awesome but also completely overwhelming at the same time. I can't tell you how many times I've had someone (with only good intentions) say to me "you survived, just think of all the great things you can do now!" but - honestly - all those instances fail in comparison to the amount of times I've said to myself "you survived, think of all the great things you should be doing now!"...then I look down & see myself binge watching Netflix all damn day & end up feeling like a wasteful schmuck. I absolutely put a lot of SP on myself because I don't want to waste this extra chance I have been given; it's just a matter of figuring out exactly how & what I'm going to do with it, but I suppose that is all part of anyone's life - we all, at some point or another, search for where we belong in this world. 
     When it all comes down to it, I'm still learning to understand, accept, & deal with my remissues. I would be lying if I said I know exactly who I am because I don't. It's still an everyday struggle for me & I'm sure that it will continue to be a learning process, which I will happily participate in.
     To other survivor's who may be dealing with their own remissues - remember that our psychological, mental, & emotional fights doesn't necessarily stop when our physical fight does. Handle life at your own pace & be patient with yourself. Do whatever it is you need to do while you get to know the new you. We have experienced something that no human should ever have experience & yet here we are...& I think that is pretty fantastic. 

- LISA -