Friday, August 30, 2013

Staying sane while wondering the 'cancer road' is not always an easy task.  I don't know how many of you have taken the time to read into the type of cancer I am currently fighting, but of the cancers that are out there GBM's are not the best option.  Obviously cancer is cancer and there is not a single one out there that is in anyway good, but GBM's are one of the more aggressive and deadly.  I try my hardest to not look at statistics and I go out of my way to not read anything regarding my ailment because 99% of the time it is just bad news, but sometimes it is unavoidable.  Today was one of those days.

My last post was regarding one of the strongest persons I have ever met.  Lauren 'Lola' Scott taught me what strength is in a way nobody else could.  She didn't have the same cancer, but hers was just as bad.  She fought from the day she was a teenager until her departure at 16.  I started Little Kings to keep my mind occupied and help out other people in my situation without putting much thought into it other than I wanted other people to have the help I was so lucky enough to have from all of you.  When I met Lola she blew me away and I immediately met one of the best friends I will ever have.  It was one day and she changed my life.  We texted back and forth after she left and I will never delete our conversation as it is a reminder of someone who I never want to forget even if this cancer eats out all of my memories down the road.  When Lola passed away I began to realize what I have signed up for.  I am basically going to be spending the rest of my life helping people who are fighting for their lives and many of them will not make it.  I lost a best friend in a matter of months and I do not see this trend ending.  It is hard to not become attached to such strong, inspiring, motivating and beautiful people such as Lola.  She was genuine and loving as can be knowing that she didn't have all that much time left.  Going forward in this journey will prove to be more trying than I could have ever foresaw, but it is the road I want to take.

My family had planned a huge trip in Oregon to go stay in a cabin near Crater Lake.  This was a trip I did not think I would be able to afford or even have the ability to attend, but after Lola passed I had to get away.  Through my awesome friends (Thanks Kellie!) I was able to get a roundtrip ticket to Portland for $80 and my family assured me my expenses would be nothing more, so I booked what is without a doubt the most last minute trip I have ever done in my life and came to Portland to spend some time with my family.  Being at the cabin and forgetting about both myself and Lola for a while was everything I needed.  I was able to clear my head in the clean, fresh mountain air.  We stayed so busy the entire time that I didn't have time to think about all the bad even if I wanted to.  We had adventure after adventure, thunderstorms and the most insane rain I have ever seen.  Oregonian hillbillies that are the epitome of white trash jerks whom I wish would catch cancer (sorry, this guy was the most evil person I have ever met in my life.)  We went to some of the most beautiful places I have ever seen and if you have never been to Crater Lake, do yourself a favor and go at least once.  It should be one of the wonders of the world.  I have seen some awesome things in my life, and this is one of the most epic places without a doubt.  Spending time with my family away from my daily struggles was exactly what I needed. 

I decided to stay up here for the following week since I did not have any chemo and spending time with my nieces and nephew has been amazing.  I don't get to watch them grow up so visiting them is always a treat.  We had great times here and I wish I did not have to leave only to go back for chemo starting again on Tuesday, but such is life.  

I have been feeling so happy and just enjoying life and today I got news that someone who has the exact same cancer as I do has had another recurrence, her now 5'th recurrence.  She has had 5 surgeries already and is now preparing for her 6'th.  She has been fighting her GBM for over 10 years and she is one of the longest living survivors I have heard of.  Not many people with GBMs make it past 5 years, 10 years is almost unheard of.  I think I have read about one or 2 that have made it 20+ years, but I assure you there are not very many.  It is hard to think about a long term future with these statistics, and seeing people in the same shoes as you facing such obstacles only weighs more on me.  I am the most optimistic person when it comes to this cancer stuff, but I am also a realist.  Cancer like mine does not go away.   For the rest of my life I will stress and pray that it stays away, but there will always be an enormous (and almost guaranteed) chance that it will come back.  As much as I hate it, that is my reality so trips like this past week are what I look forward to.  Time relaxing with the people I love and care about and being able to forget about life even if it is just for a few days.  

I am on the tail end of my trip and leave tomorrow at 7am to return home.  I know when I get home I am going to be facing a ton of things on my plate of which cancer is just the icing on top, but today for the last 24 hours I plan on enjoying the hell out of my family and my sisters loving dog of 14 or 15 years old whom I probably will never see again since she is not doing so well.  When I get home I will worry about my cancer, my never ending chemo schedule, trips to UCLA, doctors appointments, MRI's, and my diminishing account balances (who would have thought you could burn through $30,000 in a matter of 7 months all thanks to cancer?)  Today I am going to try and laugh some more, I want to hug my nieces and nephew and say goodbye to Penny.   Today is sunny and beautiful and I plan on enjoying today.  I will stress later and put off my mental breakdown as long as I can.  Or maybe I should just get it out of the way?  I don't know anymore.

I have about 1,000 pictures I have taken in the last 9 days and I will post them once I get them on my computer and edit them a bit.  For now here is one of my favorites.

My Family!!


Thursday, August 8, 2013

Lola, you are my hero.

People always immediately look for answers or justification when a tragedy happens.  We need closure or an answer.  We need to find meaning in things that seem so terrible or else it makes it that much harder to cope.  Lola's death is a tragedy.  It is terrible that such an amazing young women was taken so early.  But that is what death is, it is tragic by definition.  It is the ultimate end and the final period.  After my diagnosis I have looked at life very differently.  I now notice things and understand things that I may not have understood before.  Maybe it is just me looking for answers like everyone else, but the conclusion that I have come to is that everyone has a role to play in this little land we call Earth.  I could be wrong and probably am, but I believe we are all meat to do something here, there are the bad entities that try to stray us from our path and they are the ones who were lost on their path by someone or something else.  Lola's path was perfect.  She did exactly what she needed to do.  Her life was cut short, but she has touched thousands of people in one way or another.  And those thousands of people will in turn act out in honor of Lola, and who knows who they will inspire going forward- her life is endless in many ways because her life has no doubt started a ripple effect in a positive direction.

I spent one day, not even 6 hours with her and in that time, she left a mark on me that will shape the way I live the rest of my life.  In our brief encounter I could feel her energy like a the feeling you get standing too close to a powerful magnet.  Her soul resonated with beauty and no matter how much she threw up she managed to smile after.  I watched a 16 year old women suffering from a terrible form of cancer that not only caused pain, but wrecked havoc on her breathing and all the fun nausea, vomiting, fatigue and anxiety that we get to endure as a cancer family.  Pain is bad enough, she got the trifecta.  Sometimes it takes a tragedy to make the world a better place and losing Lola has no doubt inspired me once again.  I want to thank you Lola, you truly changed my outlook on what was already a skewed perspective.  I am bummed we are going to miss our date in New York watching the ball drop for our first time together, but when I finally go you will be with me.  I mourn you today and I am sure for a long time to come, but I know what I have to do and I know you are a part of the reason I have to do it.

In my mind, I know what my end game can be.  I know what I am up against and it scares me sometimes.  I put on a good face, but there are times where I do get scared and anxious that I might not make it to 30.  Treatment is hard and fighting this cancer wears on me.  I'll have been on chemo of one sort or another for over 180 days, 30 days of high dose radiation under my belt, countless IV's, blood draws, labs, MRI's, scans, appointments and who knows what else when I finish all of this and then I get to go into 'remission' if I am lucky.  And even in 'remission' I will still be doing MRI's every 2 or 3 months for the rest of my life.  It is a lot of pain, it is hard and it sucks, but watching Lola fight for so long put even more perspective into my life.  After watching Lola go through what she went through, I no longer have any of the fears that I had before.  Now, I simply hope that in the time I have, whether it is 2 years or 52 years that I can help to inspire some people the way that Lola inspired me.

"I love you to the moon and back."
Lauren 'Lola' Scott

Ryan Coffelt

Little Kings- Helping Young Adults with cancer.