2,922 Bonus Days: That’s EIGHT Extra Years of life!

It’s that time of year again, ALREADY.  Thanksgiving has somehow come and gone, and Christmas is right around the corner.  My childhood BFF Mary just celebrated her birthday on December 1st (a chronological landmark I remember every year) and now the third is here…

It’s my EIGHT YEAR CANCER-VERSARY! 

Can you believe it?  It’s been eight happy, wonderful, blessed bonus years that I’ve been gifted since beating Stage III Hodgkin’s Lymphoma back in college.

The funny part about this commemorative occasion is that for the last several years, we’ve been celebrating it on December 5th.  In writing a post for this very blog, I uncovered some old photos, and actually found my radiation completion certificate – and lo and behold, it was dated the 3rd.  So the third of December it is.

The certificate of radiation completion!

This morning when I woke up to some texts and emails from family, I kinda found myself reflecting for a bit.  My moods ranged from full of awe and reverence to downright giddy. On Facebook, I posted an image of my cancer-beating certificate, and I’ve gotten an obscene amount of likes on it, like in the 160s and climbing.  And my dear pal and former-roomie and current co-worker Sasha “Salsa” Freeman Gray has been quite lovely in uploading some of the sillier pics from those crazy cancer days.

I was in college, had already gone through some really crazy health issues (a mis-diagnosis of Crohn’s Disease led me down the garden path of insane meds and eventually a full bowel obstruction which required a surgical resection), when my neck started to look like a sock full of golf balls – at least that’s the easiest way I’ve come to describe it.   I was tired, running slower than usual (literally, I ran a 5k and noted that my time was really slow, even for me), and I was having terrible night sweats.  Eventually I developed a non-producing cough, and around the holidays I just assumed I had some kind of supercold that my immuno-suppressed body couldn’t really fight so well.  It wouldn’t be until February of 2004 that I’d begin the process of diagnostic testing, and actually April when we found out for sure that it was Stage III-BS Hodgkin’s Lymphoma that had taken my collegiate body hostage.

With Sasha, while getting my head shaved. I didn’t want to wait for it to fall out, so I took the matter into my own hands and got my pretty round head buzzed after my first chemo round.

In the process of shaving my head, I of course, had to take pause when I reached the excellent stage of MULLET.

I’ve gotten some interesting questions today – people wanting to know what it was like, how I’ve made the most of my time since, how I’m doing now… so without boring you all to death, I’ll try and give some tidbits:

What is it like to know you have cancer? 

Cancer was wacky crazy and very surreal for most of the experience, with one grindingly serious memory that jumps forward in which I finally absorbed the fact that I indeed had fecking CANCER and that it was hardcore.  Most of the time though, when you have cancer and you’re all chemo-bald, people know what your deal is and they’re very nice to you.  In my ongoing health issues with “Crohn’s Disease” and what we now know to be Acute Porphyria – it’s different. 

The serious realization came about very randomly.  I was driving home, and I was getting on Hodges from JTB (Jax ppl know what I mean), and it just hit me: I HAVE CANCER.  THIS IS SERIOUS.  And it kind of quietly overwhelmed me for a few moments, but by the time I got home I felt “normal” again.

How old were you? 

I was 20 when I was diagnosed, and celebrated my 21st birthday between chemo sessions.  I remember going to the Pepsi 400  (because that’s what it was called back then) on my actual birthday (July 3rd) and when a freak rainstorm came through I was freezing.  My then-boyfriend, Rick Neidringhaus, went and bought me some sweats and a windbreaker for my two favorite drivers: Darrell Waltrip and Dale Earnhardt Jr, respectively.  I still have the pants and actually wear them often!

Sasha and bald-me, circa Fall 2004.

What got you through?

This one is easy: God, faith, family, friends, the entire UNF family, the Greek system, and my incredible team of doctors, nurses, pharmacists and techs – all the good people of Mayo Clinic in Jacksonville who efficiently and effectively saved my life.  I had top notch doctors – I was already a patient at Mayo because of my aggressive “Crohn’s Disease” (since I really didn’t have Crohn’s, my body would never respond to the treatment – rendering me a medical outlier with an extreme case and therefore in need of the best doctors in the land.  Luckily for me, I lived in Jax, FL at the time and had Mayo access just a few miles from home).

I kept a really awesome attitude the entire time.  I bore everyone to death with the stories I tell again and again – but the one that I must tell when I saw a mother and her wheelchair-bound small child park next to me at Publix the day I was officially diagnosed.  Seeing that kid who has likely never walked and likely never will, I refused to feel sorry for myself.  It changed my entire perspective on the situation.  The first 19 years of my life were spent in excellent health, as I lead a life of privilege, freedom and one full of lovely memories and special experiences.  Had I died the day I was diagnosed, I wouldn’t have had a regret or a single sad feeling for myself.  Having cancer is what it is – once that tough lump is swallowed, all that’s left is making the best of it.  So I fought hard, kept my chin up, and did what I always do: plow my way through with some jokes and a lot of laughs, and a firm anchor to God and faith in the ultimate plan He has for my life.

Have these eight years been well-lived?

I mean, according to me – YES.  Heck, yes!  I’ve done some pretty amazing things and I believe I’ve chocked eight years full of an awful lot of life.  I’ve traveled, I’ve helped others, I’ve tried new things, I’ve experienced love, loss, happiness, and pain, full spectrum human experience.  I’ve created art, made others smile, formed friendships in the strangest and most normal of places – and every now and then I hear the “I word,” that I’ve inspired someone else into doing something good or at least having a good attitude about whatever it is he or she has going on.

Knowing that I can actually inspire others is very humbling.

Knowing that I’ve literally been granted 2,992 extra days of this life (heck yes I counted Leap Years) is humbling.

Snorkeling in Hawaii. I’ve had a very happy life, yes!

I ran my first marathon this year, 26.2 miles!

Helping Sandy Relief in NYC last month.

My husband + me, smooching from a deer stand.

Me – hunting just this past week or so!

So what’s it like now?

It’s both far-removed and ever-present.  The scars have faded, but they’re still there; and I still have my very first tattoos – the radiation dots that they marked me with to make sure they hit the same spot every day.  (As far as scars go, I had a couple stitches in my neck from a biopsy, another incision on the left side of my neck from having a lymph node removed, and I have a scar on my chest when I had my port-a-cath taken in and out).  I don’t obsess or worry about relapsing like I once did, and I don’t have to do the often check-ups and scans as I did in those first crucial years of remission.  I passed the five-year milestone three years ago, and that was a BIG ONE.  That’s the “you’re cured” milestone.

I don’t ever want to lose touch with that experience though.  After all, having been through cancer is a huge definer of who I am as a person.  It shaped me into a MUCH nicer person in general, and a tougher person in many ways.  It gave me a glimpse of my own frailty and left me with a profound appreciation for life and every breath I take.  And with that comes a responsibility to carry out a life well-lived and to do good in this world – and I find myself still trying to grasp at the best ways to keep that promise.

From this experience, what still impacts you today? 

I forever live with inexplicable gratitude in my heart.  For every nurse who held my hand, every doctor who took the time to make sure I received exemplary care… to my loved ones who came with me to chemo, prayed for me around the clock, and supported me in so many ways that words can never express… to the friends, classmates, and total strangers who came together to raise funds to help cover the costs of my treatment, to my Dad for working hard and having a good job that provided excellent insurance for me and money still to cover the costs that even excellent insurance didn’t take care of.

I carry with me a legacy of the hopes, dreams, and the honor of so many people who aren’t as lucky, of those who came before me and the technology that saved my life, of those in circumstances that don’t allow for early detection or top-notch medical care, of those who just don’t win the fight.  And that’s something that’s very real with me, a part of who I am.  We stand on the shoulders of so many giants, and I can’t ever forget that.

Mostly though, I just feel like me: Rose.  A happy wacky tie-dye loving slightly-redneck weirdo who often smiles and laughs everyday, and who is truly loved.  And I’m happy to be me, and I feel blessed to be me – each and every day.

I suppose if there was ever a profound take-away from an experience like mine – it is knowing in every ounce of my being that I am loved.  By my God, my family, those around me then and now, my husband, my friends, my sister, and even strangers – yes.  I am loved.  And being able to come face to face with such colossal concepts as life, death, and love is an honor that I am humbled to have experienced and lived through to write about now.

…

This post is dedicated to all of the many, many people who saved my life.  And to the many more lives that are forever changed by cancer, in all manner of ways – both happy and sad. 

…

Thank you for reading and for your support.

XOXO, 

HHR

seven extra years of life: happy cancerversary to me!

I’ve had Seven Extra Years, and Counting… SEVEN!!

Last weekend was my SEVEN YEAR CANCERVERSARY.  Yes, it’s been seven whole years since I finished treatment for Hodgkin’s Lymphoma.

Just, WOW.

my cancer certificate: december 3, 2004.

I don’t have the right words, really.  To say that I’m happy, or to say I’m grateful just isn’t enough.  Mere words like thankful, elated, indebted, honored, or humbled, are all accurate, but aren’t exacting or strong enough.

It’s a wordless kinda feeling.

On Cancer:

Cancer was weird.  It was a weird time in my life.  It was a difficult, and kinda scary time that was full of procedures and medicine, doctors visits, worry, lots of shots.  I did chemo.  I did radiation.  I had surgeries.  I was bald.  I was scared. I was strong.

And of course, as trite as it sounds: cancer changed me.  It really did, though.  I emerged from the fight as a kinder person, a nicer, sweeter, more appreciative-of-the-small-stuff person.  I like post-cancer Rose much better than her pre-cancerous bratty counterpart.

Cancer brought my family closer.

Cancer brought me back to God, and I had never been closer in to Him than during that time.

Eight Years Ago:  (it’s eight years ago, because the fight took a whole year)

I remember going to the appointment with my Aunt Sheila and Uncle Tim, in my pink velour track suit, and finding out I needed chemo and I was going to lose my hair.  I was on a boat in Polk County with my then-bf Rick and our pal Critter, when my surgeon called to give me my pathology results and told me I really did have cancer.

We had this meeting, my boyfriend at the time, Rick, and four of our closest friends: Chas, and his then-girlfriend Jess, and Richard Mack and his then-girlfriend, Jessica.  Chas and I were running for Student Gov’t Pres and VP and Richard was our campaign manager.  The cancer diagnosis came smack dab in the middle of our campaign.  We had to figure out what to do.  It was crazy and intense, and so surreal.

(all my pics from back then were prints, no digi.  and they were all stolen.  i wish i had pics of those days i could pop into my blog, here. boo.)

I’ll never forget the people that saved my life.  My family and friends, the Mayo Clinic in Jacksonville, Florida. My sorority and the whole Greek system.  My friend Jessica who got her church to donate $3k towards my treatment fundraiser.  Total strangers just giving to keep me alive.  It was amazing.  I was on the receiving end of so much… it’s impossible to ever give back enough.  To ever be thankful enough.

In Seven Years…

I’ve done a lot.  I’ve tried to make the most of my extra life, of my bonus months, days and hours.

I graduated college.  From UNF, with a BA in English and Poli Sci.  I had a 3.8 GPA.  That’s an accomplishment I’m durn proud of!

go ospreys!

And for the record, I literally invented the SWOOP!  Anyone from UNF will know what I mean.  I promise, I am the creator and inventor of The Swoop!  I used to do it at half time during basketball games to pump up the crowd.  Anyways! Moving on…

After cancer, I got this sweet tramp stamp to signify my accomplishment:

yeah. i'm an english major with a grammatically incorrect tattoo.

I went nuts for a while.  I had some rockin’ good times!

woo. party. good times. fun.

when i say i went nuts, i really mean it.

the infamous cactus feet incident. oh man.

this was the spring break right after i beat cancer, i'm in pink in the middle there.

oh man, i'm in the bottom left... we were nuts!

I lived in this awesome apartment with all my best friends.  1308.  We had way too much fun, and engaged in far too many shenanigans.  It was such a great era.

I worked for Merrill Lynch for a while.  I did somethingerother with some mutual funds. It was boring and kinda tricky, and in a cubicle.  I liked the people I worked with, though.  I loved them, actually.

the bull!

my team did super mario bros. for halloween one year. it was awesome.

I lived in Jacksonville for a while after UNF.  I loved my friends, and I just had a fun, good life.

I dabbled in modeling.  But that didn’t go very far.  Oh wells! I tried, hehe.

I quit the cubicle and became a beach lifeguard, again.  It was my first and most favorite job of all time.  I will always love it.  So yeah, in 2008 I quit ML and went back to  the beach.  It was so fun!

Then I decided to try and grow up some more.  I went back to school, for nursing.  I worked super hard.  I graduated from Remington College of Nursing with a 3.1 GPA.  Nursing school was seriously the hardest thing I’ve ever done, academically and mentally.  It was tough!  But I was good at it.  I loved it.

nurse rose!

In the past seven years, I’ve dyed my hair an awful lot!

I’ve traveled: Costa Rica, the Bahamas, Hawaii, the Northeast, NYC a bunch of times, Vegas, and more…

I got back into surfing.  I learned yoga.  I taught myself how to paint, sorta.

I started teaching CCD (Catholic Sunday school, basically) in Jax, and continued it once I moved to Hawaii.  When I left the Catholic church, I taught Children’s Church at my non-denom place of worship.  I like working with kids so much.  I want to be a pediatric nurse some day.  Or a best-selling writer.  Or both!

I met, fell in love with, and married the most wonderful man in the whole universe.  I love you so much Duggs, and I am so very blessed to have found you and to be your wife.  You’re the best!

I started a tie dye business.  And this blog.

tie dyeing back at my dad's house, years before i went pro

I’ve had some ups and downs with my health in the last seven years, yeah.  I’ve had a few surgeries.  I’ve logged some hospital time, it’s true.

post-op in 2009

It would be impossible to have seven years of only happiness, that’s not real.  There have been challenges, and hard time.  Sadness. Loss.  Frustrations.

But that’s the cool thing about surviving cancer: it really toughens you up.  And it teaches you this resolve to get through any and everything.  And for me, I’ve learned to do it with a smile or with a joke.  I’ve learned to do it with the help of those who love me, the help of strangers too.  And with faith in God that it will all be okay.

For seven extra years of life, I am so absolutely thankful and happy.  I try to live a life that shows how grateful I am, and one that aims to make the most of every day, of every opportunity, just of everything.

So here’s to seven more years!  Or seventy more years!  Or even just seven more minutes of this wonderful and precious life.  Every breath is worth it, and every moment is a gift that I am forever grateful to have.

as always: thanks for reading! xoxo, hhr

the health history of happy hippie rose

My Health History, Well A Brief Summary Anyways.  Consider this Part One of two, the “two” is going to be the update post about what’s going on now, okay?

Here goes nothing… and I’m sure I’ll forget something.  (If I do, someone let me know, will ya?)

Growing up as a kid and teen, it seemed like I was never sick.  I remember an occaisional fever, and the time we all got the chickenpox (my mom and all her friends had us all get it at the same time by rubbing us all over my friend Mary when she cropped a pox, clever thinking!).  But never “sick.”   I swam and ran track in high school, I was a beach lifeguard.  I was really healthy, athletic, I was fine.  (What a blessing!!!!).

My sophomore year of college, 2002, started off with an emergency appendectomy which lead to the diagnosis of “Crohn’s Disease” and it was all downhill from there. When they did they appy they realized my needless organ was fine, but that my small intestines was inflamed and horrendous, misdiagnosed as appendicitis, and thus the Crohn’s Diagnosis.

Immediately I started treatment for Crohn’s Disease, which was fun, let me tell you.  I took steroids, antibiotics, anti-inflamm meds, and immunosuppressants.  Tons of meds.  I was “sick.”  The meds for the Crohn’s didn’t work, things got dramatically worse, and in the spring of 2003 I has a major surgery losing a couple feet of small bowel and a snippet of colon.

2003: the prednisone made my face huge. woah.

not to be totally porn... but you can kinda see my scar that runs from hip to hip from the bowel resection. What a doozy!

In 2004 I battled Hodgkin’s Lymphoma, which was actually acquired as a result of medications I was on to treat the Crohn’s disease.  All of the immunosuppressants done broke my immune system.

I did chemo (went bald, yes!) and radiation.  They also sliced me open a couple times to take out some lymph nodes, put a portacath in there.  At one point they hacked into my bone marrow (thank God the cancer hadn’t spread to there) and they did oodles of biopsies, fun times.

sasha's on the left, i'm on the right. i know this is terrible pic quality, but i hardly have any pics from back then!

Here I am on a news story about harvesting eggs.  Yeah, I had my eggs harvested before I started chemo (because of the chance I’d go infertile).   Check me out, I’m about four minutes into the video clip:  http://www.cbsnews.com/video/watch/?id=617776n&tag=mncol;lst;8

The Sorority I was in raised money for my treatment.  The entire Greek system at my school did, really.

the school paper (UNF's "The SPinnaker) did a story on my cancer and on all the fundraising that went down. it was just amazing the love i was shown.

a close-up of the photo from the paper article, that pic is from right before i started chemo.

It was an intense time… coming from a Stage III Diagnosis and back to health all in one year.  But it was also formative, powerful, inspiring.  Clearly it changed me, and I think much for the better.  I had an AMAZING support system.  My doctors and cancer team was all at the Mayo Clinic, and they were pretty serious (duh).  My family was incredible.  Driving up to Jacksonville to take turns going to treatments and appointments with me.  The guy I was dating at the time was a lifesaver, literally, as well as all of my friends.  It was just incredible the literal physical love that embraced me.  Strangers and people I was close with all teamed up to save my life.  It’s such a hard thing to put into mere words.  Thank you, is as close as I can get.  Thank you for my life everyone. 

My overall ability to appreciate life increased tenfold – at least.  Ever since I’ve been happier, kinder, more grateful.  My faith is God was solidified (my testimony of God coming to me in those days is pretty awesome) and my trust in humanity restored.   As hokey and bullcrap as it sounds, I’m grateful for having had cancer.  It changes your perspective on everything and after having gone through it, everything is better.

The day I was diagnosed I pulled into Publix after leaving the hospital to grab a couple things to eat.  I was feeling pretty sorry for myself after leaving the hospital, knowing I had cancer.   I pulled into the parking spot and I’ll never forget what happened next… the spot next to me was occupied by a van.  I saw a mom get out of the driver’s side door and walk around to the other side… and a special door slid open: it was a wheelchair ramp.  Out came a child, maybe four or five years old in an electronic wheelchair.  I have no idea what illness that child had, but I just remember seeing scrawny, twisted legs… and a HUGE smile.  The mother talked to her kid as the wheelchair lowered down, using big smiles and a happy tone, clapping once the chair made contact with the ground.  These two people were so happy.   This child who would probably never walk was smiling, and here I was: 20 years old and getting sick now.  I’d had an untouched childhood, full of running around and doing “normal” kid stuff…  (now seriously, don’t anyone get all politcally correct on me for my retelling of the anecdote.   I’m not saying this child wasn’t normal or that I’m special because I’ve never been in a wheelchair…. that’s NOT the point, okay?).   I saw this child who would never run a lap or be on the swim team in the same easy way I had experienced.  I had about nineteen years of flawless health, and so many many people don’t even get half that.  Nineteen years!  (I got cancer when I was twenty, but I started getting sick when I was nineteen).  From that moment on I decided never to ever feel sorry for myself.  In the grand scheme of things: I have had everything to be grateful for and not a thing to feel sorry about.

Anyways… I could ramble on and on about my cancer experience…  chemo sucked, radiation was worse.  One night a sorority sister of mine cried because she had gotten a bad haircut.  We were all going to a concert together, and we met at a frirend’s house first to eat dinner.  This one girl, A, came into the house just in tears.  She’d gotten what she considered a bad haircut.  A cried, huge tears rolling down her face.  And I just sat there, bald and gobsmacked.  She really had the audacity to cry about a bad ‘do while I was sitting there bald?  At the time her insensitivity made me mad.  I remember being pretty annoyed.  Looking back it just gives me broader perspective.  Next time you think your mop looks ugly, just be grateful you even have a mop!

a wig and hat catalogue the ACS sent me, along with some other cancer info

my completion of treatment center from mayo clinic's rad dept - for the last several years i've been celebrating my cancerversarry as dec 5th - but son of a gun, that thing says the 3rd! shoots!

In 2006 I had an inguinal hernia which needed surgical repair; it was done openly (as opposed to lap surgery) and I had some mesh put in there.  They used the same scar as my bowel resection and just extended it.   In 2008 I had some skin cancers cut out, they were Melanoma, which is annoying because I can’t say “cancer-free since 2004.”  Ugh!

Backtracking for a minute… In 2007 (after a crazy series of events and symptoms) I was diagnosed with porphyria. Porphyria is a blood disease that has a whole variety of symptoms – for me the most notable is GI problems.  Tummy aches, digestion problems, nerve cell death in my GI tract, they can all be blamed on the Porphyria.  My doctors actually think now that I don’t even really have Crohn’s Disease, that it was the Porphyria all along.  Even though I was officially diagnosed with this genetic blood disease in ’07, I’m just now learning about it.  But that’s a post all on it’s own.

In 2009 they cut me open to get out scar tissue that had grown in me from all the times they had cut me open before.  “Lysis of Adhesions.”  The irony never ends.

I’m the “sick girl.”  I guess.  It’s weird.  As sick as I am, I’m also not really sick.  The most I’ve ever spent in the hospital was a couple weeks.  I have both arms, both legs, I can walk and talk.  I can even run more days than not.  I’m honestly okay, and I enjoy a fabulous quality of life.  I’ve never spent a minute feeling sorry for myself.

When I moved out to Hawaii I had never felt better.  Duggs and I quit smoking (I know, a cancer survivor who smoked = as ungrateful as it gets, I KNOW).  I got back in shape.  The only med I was taking was my thyroid pill (when I had radiation for the cancer they lasered my thyroid to death,  oopsies!).

2010: the best I've ever felt!

As I was feeling so awesome and healthy, we decided to strike while the iron was hot, and we conceived.   We found out we were pregnant right before Halloween and I would have been due ’round the 4th of July.  I don’t think I’ve ever been happier or felt better in my life. Honestly.  It was the best.

I miscarried around Christmas.  It was one of the saddest things I’ve ever experienced. Matthew was deployed and in Afghan when it all happened.  On December 17, 2010 I had a regular appointment, when I got there they couldn’t find a heartbeat.  They gave me some meds and sent me home to take care of business on my own.  I bled for almost a month; starting cytotec on December 19th and not passing the “products of conception” (my precious baby-to-be) until fifteen days later.  (If I could go back in time I would have done the D&C a million times out of a million times.  Cytotec should be illegal).

I’m so glad those sad times are over.  I don’t know what else to say about all of that except that if you’re blessed enough to have a baby yourself, give them a little smooch for me, will ya?  I know I’ll be a Mom someday, when God’s timing for me is better.

So I’ll end my “brief health history” there, and pick up Part Two with my 2011 Health Round-up in a post all it’s own.

I thank God for my health every day.  Despite everything that I’ve been through, I consider myself to be blessed beyond measure and more fortunate than 99.9999% of people on this earth will ever be.  I’ve had great care, good doctors, nice hospitals, and excellent treatment the whole time through.   Too many people who are sick can’t say the same.

Thank You God, for the health I have today and always.  Please bless every doctor, nurse, tech, and friend who’s laid a hand on me, cared for me, thought good thoughts for me, and been there.  Please bless them all.  I pray that you continue to bless me with a healthy body, heart, and mind now so that I may keep growing and bettering myself to do good things and help others.  I want to be healthy enough to pay it forward and take care of those who are sick.  For all those seeking better health and comfort, I pray.  Thank you God for your endless love and mercy.  Amen.