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My thoughts on Brittany, and a long over due update!

November 26, 2014 Uncategorized

Wow!  It has been quite a while since I have given an update, seems they are getting fewer as my schedule begins to become more and more cluttered.  This is going to be a longer post as I want to address a few things that have happened over the last couple months, and actually the last year.  Feel free to skim through to get jist :)

 

First thing I want to talk about is Brittany Maynard,  for those of you who have not heard of her, Click Here to read about her story. Many people have asked me what I thought about her decision because she was diagnosed with the same form of cancer I have, a Glioblastoma brain tumor.  She had her craniotomy and then was given the news that we are all given; The outlook is grim and survival rates are next to nil.  Current western medicine treatment options available typically buy the patient a couple of months and with said treatments your quality of life becomes a daily struggle and utterly brutal.  I totally understand her fear, anger and anxiety.  I know how helpless I felt, but I knew that I also had a lot of people who loved me and wanted me here as long as possible.  So I set out on a quest that lead me to where I am today.  

 

I want to be clear that I have the utmost of respect for Brittany and her decision, I have no idea how bad her physical pain and seizures were, for all I know it could have been unbearable.  I have been one of a handful of GBM patients that has been lucky enough to have the tumor completely removed and not have to deal with too many severe side effects other than constant headaches.  When a person becomes so far gone that it becomes torture for their family and friends to watch and wait for their last breath it makes complete sense to end your life so they can start their healing process.  It takes a lot of power to be able to end your own life in any capacity, even when you know you have no options left it is still the ultimate sacrifice.  I do not think I would ever be able to end my own life no matter how hard things got, I just know that every breathe I am alive, I am one breath closer to a cure.  

 

The only thing I have an issue with is that she didn’t try anything.  Her doctor told her that her timeline wasn’t looking too good, she did some research (not sure on what she found or was looking for, but there are many different therapies now being utilized to treat these aggressive tumors, some western and endless amounts of alternative therapies.)  When she decided she did not want to pursue any of those options she gave up.  Her doctor told her she had six months to live, but guess what- there is not a single person on this planet that can be 100% positive that a cancer will end a patient’s life in ‘X’ amount of days,  They can speculate and base numbers off historical evidence and current health, but each individual person is different and each individual person has the power to beat the odds- it is simply a matter of how hard you are willing to work and how badly your will to survive is.  I have no doubt she wanted to live, in fact I am positive she did, I just don’t know if she had the mental strength to go through what would have been the most brutal, gut wrenching experience of her life.   

 

I can not relate to her physical pain or seizures at all, but I know the anxiety, fear and frustration that goes into the mental side of cancer.  The mental games cancer plays on you can be just as bad as the physical pain.  In pain there is always an option to alleviate the symptom, you can never escape your mind.  It is hard having to go in every two months for an MRI to see if the little monster has decided it wants to return and try to steal my life.  Sitting in the little tube listening to the chirps, squeaks and rumbles for 40 minutes while trying to focus on positive thoughts is draining.  Then waiting for the results to be examined seems like a years time even if it is only overnight.  Doing them on a Friday is no longer an option because it  ruins my entire weekend as the waiting game consumes my thoughts.  But in the end I am always able to ease my anxiety with the realization that I have not only done a lot with my life in the short amount of time that I have been here, but the fact that I have seen just how terrible life can truly be for some people.  When I think about what some of the other people I have met have gone through  and continue to go through, I can only imagine what they would think of me knowing the small amount of stress and pain I have to endure to get by- truly incomparable…

 

When faced with my cancer diagnosis- not sure if ‘lucky’ is the right word, but I was something enough to have gone through some life changing and eye opening experiences prior to my diagnosis.  I have seen just how bad cancer can be and literally watched it eat my mother alive.  I’ve been around kids born with AIDS and I saw children going into radiation treatment no older than 4 knowing nothing of cancer, only that they are sick.  These life experiences have given me a pretty thick shell that keeps me in check anytime I feel like I want some sympathy.  Truth is, I deserve none, in fact I consider myself lucky to have been able to do all that I have done in my 29 years of life.

 

Brittany could have explored numerous options that I have taken advantage of, she chose instead to simply live the rest of her life on her terms and die when she wanted, not when the cancer decided it was time.  I respect and admire her for that choice, but people need to know that there is so much more than what your doctors tell you and death with dignity is not the only option.  Soon there will be an outlet for everyone to explore endless types treatment options that your doctor might not know about or simply does not believe in. +BYOC+  

 

——

 

And now an update on the foundation!-  The last year has seen some changes in Little Kings, in fact it has almost entirely warped into something I think needs far more addressing than the old mission and vision that started out as Little Kings.  I am happy to announce that I will soon be going public with the foundation, just waiting on our 501(c)(3) approval and everyone will see what myself and my partner David have been working tirelessly on for the last year or so.  With the support of some amazing, humble and generous friends this vision will soon come to life and hopefully we can help change some lives!  Be on the lookout!   I want everyone reading this to know that you guys are the true backbone to my soul.  All the people who have supported and kept up with my journey through all this are overly appreciated.  On this Thanksgiving I am ecstatic to be alive and thankful for all of you!  Right now I am  reaching out to anyone who has anything they would be willing to donate to the foundation for an event to be held in the Summer/Fall of 2015. I have already collected an assortment of stuff from some amazing people, but I can use anything you are willing to part ways with.  I want to start collecting things now so I can begin to categorize and make arrangements, if you  are crafty and want to create something to donate, like i said anything is welcome!  I will also be asking for some help in the coming months and I hope you will continue to stick by my side and help me change some lives!  Please e-mail me at ryan@ryansepicbattle if you have anything you would care to donate, or if you have any talents or networks you think our foundation can utilize.  Also, if anyone knows anyone in any sort of media outlet, daytime show or anyone that might want to highlight this foundation please let me know!  I truly want everyone who has been by my side through this whole journey involved in this foundation, you guys have got me to this point and now I want us all to pay it forward to  others that can use some help!  

+BYOC+

 

Now finally an update on me!  ALL CLEAR!.  My favorite two words spoken again just two days ago and this one was a crucial one.  December 17 marks my 2 year cancerverssary and at 24 months I am now in a statistical category of patients that can probably be counted on your hands and feet.  Year three will be a critical year with my new prognosis based on my WHO (overall health, history and diagnosis)  I am down to a 66% chance of recurring in year 3!  This is a lot better than when i started around 97% at day one!  When I make it another year that number will drop even lower.  Year 3, lets do it!

 
HAPPY THANKSGIVING!

FTGF,

xo

Ryan

 

“Hold fast and explore every option”

 

DCIM100GOPRO

Fiji was awesome!

 

 




11 thoughts on “My thoughts on Brittany, and a long over due update!

  • Diana

    Hi Ryan, I am so happy to read from you again. My sister (30) was diagnosed with the same disease 1 year ago and we have been through the same nightmare. Since then, i check your blog regularly. My sister chose to fight as well, she is taking homeo and healthy diet and her tumor keeps decreasing from one MRI to another (her tumor was removed 80% through surgery). She is now left with 10/8/6mm tumor size. Hope you all the best in your life and will be by your side with my thoughts! Cheers!


  • Teresa

    Hi Ryan, Congrats on your clean scan! My husband had a GBM removed 15 months ago from his left temporal lobe, did radiation and chemo and (thank God) is doing very well. I feel the same way about Brittany. While I respect her decision, I have to wonder if she was aware of other treatments and of the GBM survivors that have managed to survive many years (10-15) and are still living life and kicking cancer’s ass. Their stories may not be the norm but they are out there and if they can do it then my husband can do it, and so can you! I found survivor stories on my own through the Virtual Trials website. No doctors ever mentioned that it could even be possible to be a long term survivor but reading stories like theirs and yours gives me and my husband great hope. Our family has a motto that we follow, “Wake up, kick ass, repeat”. Take care and FTGF! -Teresa


  • Kindra

    Such an inspiration Ryan. It was a treat getting to hear about the foundation directly from your mouth last week at the wedding. You’re so loved and supported. Bravo my friend. Bravo!


  • Diana

    Hi Ryan, so good to hear all is good in your life and health! I keep ‘monitoring’ your blog 1year ago when my sister was also diagnosed with GBM (80% of the tumor was removed). She also chose to fight, she is on homeo and diet and for the moment it seems to be working, the remaining tumor is decreasing. All the best from Romania!


  • Sarah

    When the Brittany Maynard story came out late last year, I was just about to get a biopsy on my tumour to see if I needed surgery to remove it (which I have since) and I gotta say it really pissed me off! All my friends and family were liking the post on Facebook and saying how brave she was, I felt like she just gave up! I was exactly like you, why didn’t she try anything to prolong her life e.g. change her diet, seek out alternative therapies, etc. There is nothing brave about giving up! Sorry it just makes me so mad!


  • rosupik06

    Cousin Laura and Greg, You need to understand about my sucedhle with CTU online of working towards my Bachelors Degree and stillworking with new man instructor James Taylor and he lets me to work on all of my assignments that falls on June 16th. My Dadand I wish you the best wishes to the both of you. Laura, pleasetell your parents that my father and your uncle Dave and Cousin Diana won’t make it to your wedding it cause of my assignments are due to time management and hope you understand. Cousin Diana & Uncle Dave Shanafelt


  • rosupik06

    - I’m right there with you behind on it all!!! No boiggln‘ these days just so I can focus on getting my clients there photos and albums!!! I hope you are well! This wedding was just amazing of course! Happy Holidays to you and your fa,


  • sapor2

    - TINA! I don’t even know you! Or Todd for that matter he is just my farivote photographer. But I seriously LOVE you despite all that. Your smile is contagious. And I love every one of these photos. Amazing work, Todd!


  • sapor2

    JoAnn Caparotta – I knew the farm would make a unique bacdkrop for the kids’ wedding shoot and you used it to create some real works of art! Spectacular!! I can’t wait to see the rest .


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