Wednesday, July 17, 2013

Signing up for the cancer club.

When you are diagnosed your life changes and pretty quickly.  It's like an onslaught of anxiety, information, depression, acceptance, anger and every other emotion all mixed into a bag and left out to ferment.  The beginning is absolutely terrible, and then you start to find a routine.  You get a support system, you start your treatment and you start to feel comfortable in your new life.  You get used to getting poked by needles about 3 or 4 times a week.  You learn terms that most people couldn't pronounce without assistance, you learn all about blood tests, MRI scans, medical jargon and actually know what they mean.  Taking 75 or so pills A DAY doesn't seem all that bad after doing it for months on end.  You start to accept that for the most part, your life will never be the same.

For me, I found direction and purpose, others aren't always so lucky and often others let their prognosis and diagnosis overwhelm them and give up.  What I am also finding, is that I have met some of the most amazing people through this journey.  People who are in the same fight as me and some of which are not doing so well.  I started the Little Kings Foundation wanting to help people that were in my shoes not thinking about the fact that the people I am going to be helping will for the most part be in the hardest time of their lives.  I have made friends with people that to be honest, will not make it another year.  I have seen children going through the worst treatments imaginable, chemos that make mine look like a frosty beverage on a hot summers day.  I have grown to love my fellow warriors, and signing up for this life, I am going to watch a lot of them die.  I still don't know how I feel about this and I have heard of 'survivors guilt,' (not that I am a survivor yet, still wayyyyyy too early to be certain about anything) but I don't know if thats what I feel.  I know my purpose is to be alive and help so I don't feel bad for being alive, it's more the fact that I have to watch some of the most amazing people I have ever met die and can not help them.  This is what angers me more than anything.

When I was first diagnosed I started looking at random blogs, Instagram hashtags, and countless other peer outlets for young adult cancer fighters.  I couldn't tell you how, but I somehow stumbled across an account of the sweetest and most beautiful young lady; her smile was astounding for her current situation and all of her pictures were full of life and energy.  I started following her and reading more about her and it turns out she has been fighting cancer for a few years now (She is now 16).  I then went to the Stupid Cancer's OMG young adult cancer summit in Las Vegas and I saw her.  I never said anything to her and I never even made eye contact, the only time I saw her was in passing down one of the large corridors at the Palms Casino.  She was walking with her chin held so high, that was the first thing I noticed about her.  She was so confident and she seemed like she didn't have a care in the world even though she was fighting just like the rest of us.  She was wearing these combat boots that made her look even more bad-ass!  She moved me in that one instant and I can still remember her mom with her halfway grown out ribbon shaved on the side of her head in support of her sick child.  The both of them were fierce and unwavering.

We left that summit and I grew more interested in her and kept up with her more and more.  She never knew I existed until very recently when she took a turn in a not so good direction.  Treatment was working and then it decided to suddenly stop working and actually speed up the tumor growth.  This caused a tumor on the bottom of her lung to grow to a pretty large hot dog looking tumor causing her pain.  The cancer has not been easy on her and it is being very tricky to say the least.  Lauren or Lola is now taking the time she has whether it's 5 years or 80 years to do what any 16 year old girls wants to do.  Little Kings Foundation along with a number of other amazing and inspiring people are doing everything we can do get all of Lola's wants taken care of. 

Lola came down for the first part of her 'bucket list' trip last week on Tuesday, July 9th.  She flew into OC Airport and went straight down to Santa Margarita for the first meeting with Tamara, another person who was met at OMG in Las Vegas.  I had a close and amazing friend Kelsey come up from San Diego to do her makeup professionally.  After getting her makeup done we set out to Tustin to meet and hang out with the amazing tattoo artist Dan Smith, owner and artist at Captured Tattoo in Tustin known from Kat Von D's show LA Ink and lead singer for the band The Dear and Departed among other ventures.  We spent a good amount of time chatting and learning about the tattoo world with Dan.  After an amazing visit at by far one of the nicest tattoo shops I have ever been inside of, we went to dinner at Rutabegorz across the street.  We finished the day a little earlier than we hoped, but she had a long few days ahead of her so we didn't mind.

The following days were spent with other kind people (all of whom were met and befriended at OMG) doing countless amazing things.  She had a massage on the beach, she did yoga on the beach.  She went out in LA and spent the night in Beverly Hills.  She lived a normal life and how a 16 year old should spend her time, not caring.  She was able to forget what she is facing everyday of her life, and for the past 3 years!  She laughed and glowed with energy a mere 2 minutes after she was vomiting in the bathroom like someone who had 20 or so too many shots.  It didn't matter because she lived in the moment and the happiness she spread made everyone around her that much brighter.  Lola went home a day early, not because she was filling sicker, but she wanted to rest for a couple days before she heads to New York for the second half of her fun filled adventure which will take place this week!

Lola is an inspiration to me.  She puts me in check when I think my life seems a little crappy.  Lola is the ultimate fighter who takes on her goliath opponent with a smile and a wink.  Things don't always go her way, but she won't back down.  Like all of us in the crappy unchosen war for life, we know what the end game can be.  We do not try and hide the fact that one road leads to an unwanted early 'exit stage left' and the other door leads to a life well lived.  Our theater's are much more dramatic than most our ages and we carry on.  Lola spreads joy and amazing energy and she does this by having peace with herself first and foremost.  There is no time for weeping while we are still alive.  Feeling sorry for ourselves gets us nowhere quickly so why waste the time we have here doing it?  If it is another year or another 80 years, Lola has already inspired more people in her short 16 years than many do in an entire lifetime; and who knows who those people will one day inspire through Lola's actions.  I only hope that I help people the way that Lauren helps me.

Lola always reminds me of one of my all time favorite quotes,
"To live is the rarest thing in the world.  Most people exist, that is all"
 -Oscar Wilde

Follow Lola on her journey as she slays cancer on Instagram @lola_scott1 and Love Like Lola

FTGF,
Ryan Coffelt
xo














1 comment:

  1. Powerful stuff and beautifully written. I met Lola briefly on June 2 this year, and was completely smitten. What a smart and vivacious young lady!! I'm so happy you two met and spent time together. I'm sure meeting you was just as special to Lola as meeting Lola was to you. Stay focused, take care of yoursf, and thank you so much for sharing.
    Lynnie

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