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 world...like 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?...you 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,
 Lisa

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 Football...it'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 dots...so 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.
Enjoy.

THE FOURTH SIGN OF THE ZODIAC 
- 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

“Remissues”

     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 mindset...at 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?...no 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 lost...in 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 life...like 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't...it'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. 

love&lyrics,
- LISA -










Sunday, July 12, 2015

07/12

UPDATE: It was, indeed, my motherboard but I am having my laptop fixed so hopefully she'll be back in my loving arms soon!

 
Just a little update..."Remissues" is still coming - my laptop decided to blow-up {internally I mean - fingers crossed that it's, somehow, fixable} & that spiraled me into a horrible mood that past few days SO until that is resolved I figure it's best to steer clear of anything too emotional. I know, I know...I shouldn't let something so little get to me as much as it has, but I'm only human...& my novel is on there along with all my pictures, videos, & music. 
 Ugh! 

Hopefully I'll be seeing you very soon.

love&lyrics,
- LISA -


Monday, June 8, 2015

27 and Menopausal


     Something I struggle with on a daily basis is the wonderful world of "premature menopause" {PMM} &, in my opinion, it's something that is not talked about enough in the young-adult cancersphere...so I thought I would tell you my story, my secrets, & my PMM tips & tricks. So, let's go!

    To begin, let me give you a little meno-411...according to the web, the term menopause is described as "a normal condition that occurs when a woman stops producing eggs & estrogen". It also says the "average" timeline for menopause is around age 51 & can last anywhere from 2 to 10 years. Sounds rad, right? Oy-vey!

     For me, during the very first week of treatment (at my very first visit actually) my Radiologist, Dr. S, told me that my impending 28 pelvic-radiation treatments would completely obliterate my ovaries, not only making my monthly periods stop (not gonna lie - I didn't mind this part so much!) but, ultimately, leaving me sterile & unable to ever have children. When my first surgery rolled around about 3 months later in August 2010, I had the discussion with my surgeon, Dr. B, as to whether or not to remove my ovaries then however we both decided that since this surgery was already going to be incredibly invasive (tumor removal, multiple lymph node removal, rectum resection, & permanent colostomy) we decided that we would hold off until we thought it was the right time. As usual, life had a different plan. In July 2011, I had a recurrence & after being referred to a specialist in Pittsburgh, a complete hysterectomy was added to the to-do list. So on September 21, 2011, in an 8 & 1/2 hour surgery, I said goodbye to my ovaries & uterus (as well as a handful of other body parts, haha!) & hello to premature menopause at the age of 27. The effects were immediate...& I mean IMMEDIATE. My hot flashes began while I was in the ICU only hours after surgery & continued throughout my 11 day stay at UPMC in Pittsburgh...in a room where the air-conditioner was not putting out cold air. Not even lying! There isn't a lot I remember from that hospital stay but I do remember Chad literally wetting washcloths & laying them on the vents of the air conditioner to cool them off as much as he could & them putting them all over me from the chest up. I also remember going in with my ever-present Colorectal Blue hair streak but because of my hot flashes & the ridiculous amount of sweating that accompanies them, I left the hospital with lilac hair & a blue-stained neck. 
     As time went on, menopause made itself more & more obnoxiously known: unpredictable & unmanageable hot flashes, night sweats so bad that I would be up changes my clothes & sheets 3-4 times a night (I eventually figured out that putting a dry towel on top of my sheets would turn out to be a life saver as was my cooling gel pad that I ABSOLUTELY recommend), & most recently, cystic acne which I cannot figure out for the life of me. AHHH! It all can be incredibly frustrating! 
     Ultimately though, I think the most difficult issue I had - physically & mentally - was was with my weight. In addition to Xeloda (my last type of chemo), menopause also wrecked my metabolism & the ability to have any sort of control over my weight. I ended-up gaining over 50+ lbs & topping off somewhere around 185...at 5'0. Because of my age & the fact that I have already had 1 recurrence, I wasn't & still am not able to take any sort of hormone-replacement therapy so my body is literally producing ZERO estrogen, which can be problematic is various ways (estrogen replacement is said to help with hot flashes, skin issues, & weight problems to mention a few). 
     Over the past probably 2 years I had been slowly losing weight but plateaued around 140 for the longest time...then one day I came across "Estroven". It's an over-the-counter soy-based, herbal supplement  which you take twice a day to help manage menopausal systems. I chose the "weight management" option which not only helps with hot flashes & night sweats but also does just what you think...helps maintain weight. I started taking Estroven on March 22 & have noticed SUCH a difference. Not only do I have more overall energy, as of yesterday I am down to 127 lbs! Of course, I know not all of my weight loss is attributed to Estroven...I have also tried my best to change my diet  as best as possible, including only "Zero" sodas so I can still get my caffeine fix without the calories or sugar & "Ice" Sparkling Water drinks (Strawberry Watermelon is my jam) thanks to the recommendation from my dear friend RJ but I really do think taking Estroven has been a HUGE factor is helping me regain the ability to maintain & control my weight. I am feeling more confident & less self-conscious about my body, which is a strange but incredibly liberating feeling. I still have a way to go until I completely satisfied & happy with my body but I'm getting there - it's just going to take a little more time & effort. 
     As for my hot flashes, yes I still have them but they are definitely not as intense as they once were...I can deal with that. If you're looking for something & you can't do anything estrogen-based, I sincerely recommend trying Estroven...they have so many different types to chose from so you should be able to find whichever you think is best for you...and no, this post is absolutely NOT sponsored in ANY way. I truly believe in this brand & it is a part of my everyday Cancer Survivor, Premature Menopause life. 




     

Sunday, May 10, 2015

5 Things People With Cancer Want You To Know {share}

I came across this article on Tumblr & it really resonated with me so I wanted to share the link of the original article with all of you but I also wanted to add a few personal reflections as well.


1.) Cancer doesn't always end when treatment does. 
For me, personally, this is a BIG one. I often refer to remission-life as "the fight after the fight" because it can be crazy, chaotic, & confusing as hell. In one sense, you know how incredibly lucky you are to beat a disease that doesn't want to be beaten; you - for some reason or another - have been given another chance in this world, in this life that thousands of other people are not given. It can be a heavy task to swallow, to understand, & to accept. I'm very open about my struggle with "survivor's guilt" & the pressure that comes along with be a survivor & it's something I deal with on almost a daily basis.
I think this also applies to the equally as crazy, chaotic, & confusing physical side-effects that we experience days, months, & even years after treatment has "commenced". It was only within the last month that I have completely weened myself off pain-meds but I still struggle with random body & joint pain everyday. I've been dealing with early-onset menopause since I was 27 & chemo brain is an absolute pain in my cancer-free ass. 

2.) Cancer doesn't look the same on everyone. 
WORD! Sometimes we don't lose all of our hair with chemo, sometimes we gain weight, sometimes we lose weight. 

3.) Some days are just hard.
No personal explanation needed. :)

4.) Just because I don't look sick doesn't mean I'm not.
This picture was taken less than 2 months before I was diagnosed with Stage IIIb; I was literally dying in this picture & had no idea...would you?

5.) I am so much more than my disease.
As I've said multiple, multiple times...cancer forever changes you & your life but it doesn't have to define you or your life. We are, in ways, the same people we were before we found out about our disease & we will continue to grow into a new version of ourselves post disease.
 Please don't let it negate who we are as individuals.

What do you think?

love&lyrics,
- LISA -