Sunday, January 27, 2013

Two weeks down...


Only 4 weeks, or 21 rounds of radiation left.  Oh and another extra few weeks of chemo.  And then there is the rest of my life.  My life which is now completely and utterly different in every way imaginable.  Everything about me is different, my attitude on life, my philosophy and inspirations, my goals, dreams, wants and needs, my mental and physical health and everything in between.  It is a long road and it is the rest of my life.  Something like a GBM does not just vanish one day, it might go into remission, but there is always going to be a chance that it will one day come back.  I will do everything I can to win this battle and keep it gone for as long as my body will allow me.  This is important to me and it is important to the ones who love me, I have to fight and I have to win.  

Natashia had a long talk with me on Friday night, a talk that needed to be had.  I can honestly say up until then, I might not have been taking this seriously enough.  This is literally my life at stake.  This cancer will take over 90% of the people it infects within the first two years.  That means that 9 out of 10 will not live 3 years past their diagnosis.  I have been so optimistic and trying so hard to find the right answers that I kind of forgot exactly what I am up against.  I was putting things off and not wanting to spend the money which was donated to help me in this battle unless I was COMPLETELY certain that it would benefit in my battle.  I DO NOT want to waste people's money who care for me and are entrusting me to make the right decisions in regards to how it is spent.  The thing is though, there is no 'right answer.'  There are many possible treatments, there are numerous outlets and thousands of theories.  All of which I have read over and studied, but still can not find the answer I want.  The answer will never be found because there is not an answer.  After Natashia knocked some sense into me, I realized I need to just make some decisions, cross my fingers and hope that together we can all beat this.  It has been tough for me to accept that there is a chance that I might not see 30 and part of me wants to take every day and explore and experience things I have dreamt about since a boy, but the rational and logical fighter in me knows that this will get me no where.  I need to fight this with all I can and make well informed decisions.  There are people who care for and love me.  There are few things we can say for certain about this mysterious life we live, but I think it is well understood that our time on this planet is meaningful and we are here for one reason or another.  What that reason is will remain a mystery until each one of our hearts stop beating, but until that time I want to stay here as long as I can and spend time with the people who mean the most to me.  Death can wait for me, not the other way around.

I am now done with my second week of treatment, it has been an interesting ride with exceptional highs and not so fun lows.  The first few days were rough and I think my body needed to get used to the copious amounts of foreign toxins that were flooded into my veins at a rate which I have never experienced.  I woke up nearly every night for the first few days nauseated and a nice little headache (which I think is due to the radiation.)  As of last Saturday I felt human again.  I went out to celebrate the beautiful Brighton B's Bday at an exceptional brunch on the beach front.  I enjoyed feeling the sun again and seeing friends who truly care about how I am.  Sunday I woke up energized and I did not nap once throughout the day (I think this is the second time since surgery I have made a whole day without a nap!)  Then week two started and it has been a bit more bumpy then I was hoping for.  I have had a couple bad days, but mostly good ones.  I am not complaining or reaching for sympathy, I am simply telling my story.  I knew this was going to be tough and I was lucky the first week went as well as it did.  I have also learned lessons, such as dont take 10 different pills on an empty stomach then drink your first cup of coffee in over a month on an empty stomach.   This will lead to a not very fun next 6 hours.  I also learned to switch sides of my abdomen for my injections.  Staying on the same side will lead to a small baby appearing overnight.  I guess I am learning on the fly and thats really the only choice I have.  =)

This past week I began recording my radiation therapies in the form of stop motion using my phone.

5 days of radiation   <--Click the link to check it out!

It is an extremely easy process which takes less than 10 minutes usually.  The staff and nurses are exceptionally awesome, nice, informative and knowledgeable and always answer my 10,000 questions I have for them.  They don't even care that I seem to have a new visitor with me every treatment who wants to see 'The Ark!"  The process of the radiation is simple, albeit very uncomfortable especially for anyone who suffers from any type of claustrophobia.  It is not the process that bothers me as there is no pain, smell, feeling or anything other than me laying on a table listening to a loud buzz.  What bothers me is the fact that I know I am exposing myself to extremely toxic and lethal substances that have long term side effects.  I am doing everything I can to rid myself of this ailment, I just hope and pray I am not doing it at the expense of my future health.  (Fingers crossed)

I continue to enjoy life more and more, my friends are coming to visit me and I am doing things I never thought I would want or need to do.  My passion for photography has re-emerged and I am walking the streets of LA finding amazing art everywhere.  Living in LA is a fun and interesting time. I love being able to walk anywhere I want and living on Sunset makes it an easy trek up to observatory which has the most amazing views of the city.  I also frequent the 'church' of scientology to catch up on my cult lifestyle gossip and try to get them to tell me the secret of life (unsuccessful thus far.)

Going forward I have another 4 weeks of radiation, a lot more chemo and the trial drug Velcade will continue on until either I decide to stop or they think it has worked or will have no chance of helping anymore.  I have meetings with my surgeon, Dr. Chen who got me on the path to recovery with an amazingly smooth and basically total resection of the tumor in December.  This was an important first step in the process and am thankful he did his job as well as he did.  Going through 6 or 7 surgeons to get to him seems worth it now!  I also will be meeting with my nutritionist and trying to figure out how I can change my lifestyle in order to further my chances at a victory in this war.  Diet and lifestyle DO DIRECTLY impact your chances at cancer, don't let the media or doctors fool you into thinking it is all decided by your genes and there is nothing you can do to control it.  There might be certain traits you are destined with, but for the most part cancer is not one of them and I truly believe that.  I am not a trained physician in any means, but I have learned enough about oncology to draw an opinion of my own.

I am extremely excited for the next few weeks.  My family is coming down from Portland to visit and February 9th is the benefit show!  February 10th, the awesome people at Carnelian Salon in Pasadena are doing a 'cut-a-thon' to help out as much as they can and I am uberly excited to call them my friends now!  It is from 9am-2pm so if you are looking a little shaggy, go get a cut for a cause =).   I am still overwhelmed by all the support and love I have gotten from everyone.  It is a beautiful testament to the people in my life, you guys are amazing, strong, supportive, loving and most of all care about me.  I often think that thanks are not even enough, but it is all I have right now, but when this is over I plan on making all of your lives special in one way or another.  Monday also marks the 3rd year Natashia and I have been together. I plan on another 50, if she'll keep me that is!  She has been amazing and strong through all of this and I can not thank her enough.  

My friends love Sadie Hawkins so much they celebrate it once a week!

The bday brunch crew for Brighton B!

A couple babes.  And me.

Scott loves his duck face.

One of the coolest girls I know.


Chris is alive!!!  I was confused, thought he got smuggled into Mexico or something.

Blood work like it's my job!  And she was a cool nurse.

The amazing Stacy Cato and the babe organizing the shirts!

Like I said, blood work like it's my job!!  Thats 18 viles of blood in one sitting.  (A personal best)
Sorry for the long delay in between posts, have been quite busy as you can see!  I won't let it happen again!

"Many people will live their entire lives without ever living."  Author unknown.

xx
FTGF.
Ryan
And heres the link again for the stop motion radiation

Radiation Treatment

  

3 comments:

  1. My prayers are with you Ryan! I'm a friend of Natashia's and she shared the link on FB... May you recover quickly :)

    ReplyDelete
  2. Thanks for your update..keep fighting!

    ReplyDelete
  3. Dear Ryan,

    I know we've never met but I stumbled upon your instagram account on a fluke and have been following your journey through your blog ever since. I just want you to know that my family and I pray for you daily and want to send encouragement and hope to you in any way that we are able. My oldest son, 6, has Aspergers and his favorite thing in the whole world is California Screamin'. Since we noticed that you and Natashia enjoy Disneyland as well, he drew you both some pictures that I'd love to pass along. Anyway, just wanted you to know that you have love, prayers and support coming from San Diego today.

    God bless,
    The Esparza Family
    @rebeccajean75

    ReplyDelete