December 17, 2015 |
Hi, I’m still alive! Wow I am so sorry to anyone who was wondering what happened to me, I swear I feel like the last year has seriously flown by. I guess I totally skipped my 2nd year ‘Cancerversary’ so here’s to my third! I had my 3 year MRI on Monday and I am beyond excited to say I am now 3 years stable! I have had 6 MRI’s since my last check in and all remained consistent. I am beyond grateful for all the continued love and support from so many different people, many of whom I have never even met. I am beginning to understand that In some small way, I can help inspire other people out there that might be in the same situation that I am and I am determined to do a better job at keeping everyone up to date on my battle with the “little monster” in my brain.
For those who might be just joining us: Click HERE for a quick recap of what lead me to find out I had a tumor and you can read my blog HERE to get up to date since the Surgery.
Holy shit what a year. 2015 taught me a lot of things and in a lot of tough ways both good and bad. I can’t say I enjoyed 2015 all too much, it had it’s absolutely amazing, inspiring, bucket-list moments, but all in all I am beyond thrilled for 2016. I am not one to get overly excited about New Years, but I am beyond elated for what my 2016 is shaping up to look like!
Let me start by saying I am not trying to complain or looking for sympathy from things that happened this year, I am just quickly recapping my year as it occurred and like I said on the very first day I sat down and began digitally journaling (I just can’t call myself a blogger) my life to everyone- you get the good, the bad, the happy and the sad and every other emotion that goes into my life.
2015 in a nutshell: The year started off amazing, Had a great Christmas in Portland and on took a tour of the Oregon Coast with my family, I was introduced to rock climbing which has since become a slight obsession / passion, spent New Years withe loved ones and February brought my 30th birthday along with a trip to watch my pretty awesome friend Matt Slater play in and beat the Seahawks in maybe the best Super Bowl ever. It was a memorable and fun Winter, but Spring took a bit of a turn south. March began to see a bit of a decline… Natashia and I were together for over 6 years, we went through a lot of things many relationships never have to endure, and we did it all so young. We began drifting months prior, but the writing was beginning to become to clear to ignore.. Our relationship had changed and we both knew it. It is an indescribable feeling to love someone so much and know that you would do anything for them at a moments notice, but you know deep down it is broken. We ended our relationship, but we remain friends and try to talk as often as possible. It was completely mutual and we did a lot of talking. A couple things are certain: We will always be friends and in each others lives and nobody can tell the future.
The breakup was and is really tough, nobody likes ending long relationships, especially when there is such a huge shared connection and nothing that really ever caused any real meaningful fights. While trying to sort my life out and figure out my new living arrangements life decided to kick me in the balls. Maybe a week after our split I got the news that Tawni finally lost her battle to the same cancer that is currently in my blood as I type this. Seeing her go through the process of what my fate could ultimately look like was brutal for me to watch. Tawni and her family are amazing hero’s and inspirations to me. They went through hell together and though she lost her battle, she inspired so many countless other people and happened to raise a pretty phenomenal young boy as well. My life troubles and anxieties are to hard to even talk about when speaking of Tawni’s fight, they are minuscule in every form of the word in comparison, but maybe my life troubles and anxieties can put some perspective into some of the people’s lives who know me and read this. Watching Tawni lose her life was hard, unimaginably hard with the timing of the breakup and life was not quite done with me just yet. Maybe a few weeks later I call to schedule my next bi-monthly MRI and I find out I had been terminated from coverage, the reason… Still have no idea.
Long story exceptionally short, I lost my insurance coverage for 2 months while trying to figure why I was terminated in the first place. I went through appeals processes, probably close to 100 phone calls, letters, e-mails, you name it. I had people from Kaiser trying to help me figure out what was going on and even they could not find an answer. Then one day out of the blue I get a call the make a payment for the 2 months I was terminated to get back up to date. The next week I am able to have my regularly scheduled MRI. WTF! I was never once given a solid answer as to why I was dropped in the first place, other than a possible delinquency in payment (which never happened.) This on top of the fact that my company decided they want to cut back on overhead and began to phase out my position and transition me into a commission only employee made an already anxiety filled run turn into a borderline comedic tragedy. I have enough stress in my life and trying to depend on sales to survive was not a stress I ever imagined myself having to deal with.
For a good 3 months I was not in good shape, climbing kept me sane and my mind occupied, but I needed to get out of the negative mindset I was in. Negativity attracts more negativity and I the opposite is true and I needed to make the switch. I slowly began counting my blessings and appreciating life’s beauty much in the way I needed to stay positive through my cancer treatments. I found being grateful for what I have instead of longing on what is lost or what could have been made me realize I have so much beauty and hapiness in my life. I focused on things that made me happy and tried to force any negative thoughts away as soon as they entered my mind. With my new mindset I went up to Portland again for the Fourth of July and we rented a cabin up in Leavenworth, Washington. It was an amazing trip with my friends and family filled with laughs, hikes, climbing, rafting, relaxing and HEAT- it was 107 once day! I had some pretty amazing epiphanies while wandering the mountains in the North West Cascades and decided I needed to reset, much like my purge and reset after right after my diagnosis.
I came back with a new sense of passion. I had a lot of hold ups and I questioned myself often in regards to different things on the foundation I am working on. After Tawni’s passing I really began to question if I wanted to dedicate my life to something knowing that I will have to meet and see people that will most certainly constantly remind me of what my future has a tremendous chance to look like. I put stuff on hold longer than I wanted to, but the past 6 months I have been working to launch Be Your Own CURE. I have decided to go all in and dedicate everything I have to the foundation. I am leaving my job to be able to focus on BYOC and doing what I know can do to help other people in my shoes. It is a definite leap of faith, but I decided it is now or never. Every day that passes, my odds of survival get smaller and smaller. It’s an ironic joke they play of you in conversation, “So… Year 3 you are down to a 66% chance of seeing a recurrence this year.” Which is awesome and way better than the 98% odds I had at year one, but at the same time everyday that goes by is another day I step into a smaller percentage of people still alive. I don’t ask too many questions about anything in regards to my cancer anymore, I know all the answers I need to know and at this point every question I ask will have either be a yes or a no, and I am doing well enough now to not need to make the gamble and come back with an answer I did not want to hear.
And now, 2015 is ending awesome- I climbed all over Southern California in September and October Then November I spent Thanksgiving out in Joshua Tree climbing and photographing with some awesome guys, it was an amazing (and FUCKING COLD) trip and my first time in Joshua Tree which made it all that more memorable. I will be heading out to Red Rocks outside of Vegas for Christmas to do some more (cold) climbing and then the fun begins!
2016 is shaping up to be a great year. I have always been a fan of even numbered years and 16 just seems like a great number, oh and maybe because it is also my (2 months from now) day of birth! Within the next few weeks I will be fully launching the foundation and have some really exciting things that I will cover with everyone in a separate post. I will be sharing all of the things the foundation plans to do and events we have lined up with everyone who has been staying up with me and my story before the public launch as I want you all to be a part of it, and I think you will enjoy some of the things we will be doing! I want the foundation to be community driven and we have come up with some fun and interactive ways to get everyone in on the philanthropic spirit while learning some valuable insight. February I will be going out to visit my family to celebrate my sister’s 40th and my 30th birthdays (we missed my 30th last year so were comboing this year) and I will also be looking for a place to live! I plan on moving up to the PNW to be closer to my family, and make a change.
I will update you all very soon on some fun things coming up! Until then excited isn’t the right word, but the first that comes to mind!
The GOONIES house!
The Oregon Coast is COLD in the middle of Winter
But the Winter hikes are phenominal
Super Bowl with the Pops!
The 4th with the Fam!
Big Bear is my new heaven
Camping Thanksgiving morning: Joshua Tree, CA
It is actually way better to climb in the cold, the only hard part is waiting to climb…
November 26, 2014 |
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!
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!
“Hold fast and explore every option”
Fiji was awesome!
July 22, 2014 |
Yesterday was July 21st, exactly 19 months and 4 days ago yesterday, I had a massive brain tumor removed from my noggin. 18.5 months ago I was told this tumor is one of the fastest growing and statistically the most lethal form of brain cancer. 18.5 months ago I read statistic after statistic saying that there is over a 90% chance that I will not make it another 18 months; I wasn’t too sure I would see 29. A GBM is the prototypical cancer you think of when hearing about someone being perfectly fine one day and dead less than a year later.
Living with this cancer is not easy, it is always lingering in the back, or rather the front of my mind and it entirely shapes the way I live my life. From the second I wake up till the second I go to sleep I am always trying to figure out what I should and should not do. What has the potential to slow or stop the tumor in it’s tracks and what has the potential to make the little monster make an encore appearance? Why does my head hurt? Why do I have endless ‘floaters’ in my eyes now? Why do I get dizzy sometimes? Is insomnia normal? Is my vision really getting worse or am I paranoid? Why am I tired still? These mental issues are what I call the ‘other’ side effects. These side effects have no treatment options other than mental strength and blind faith.
The mental side of cancer is probably more brutal than the barbaric treatments I initially went though. In treatment I knew what the side effects were and I had a system in place to combat each and every one. Can’t eat or sleep? Smoke a little marijuana=eat a feast and sleep like a baby. Tired and no energy from radiation= yoga and exercise- problem solved. Headaches=motrin. Nausea=marijuana. There were answers for every symptom and nothing was untreatable, except that stupid metal taste! During treatment I knew I was doing all that I could to combat this nonsense now I sometimes feel as if I am grasping at air and hoping what I am doing will make an impact. This past MRI the mental side effects got a quite a bit more difficult.
I do not like talking about my MRI’s, and I rarely post before I have them because I like to pretend that I am always 100% confident that I know everything is going to come back stable (the only word I ever want to hear from my oncologist since he refuses to ever consider me in remission.) I know my timeline, I know that statistically I am now outside the norm- a statistical outlier. I am in a very small category now and that scares me. When I was first diagnosed I was so mentally tough that my heart rate barely inched past 65 when I would meet with my oncologist to go over my MRI results. In the beginning I was doing everything right; eating right, exercising, never drinking, and always positive no matter what news was sent my way. Having to stop treatment early didn’t even phase me. The further out I got from my surgery, the more lazy I became. I got lazy on my diet, I wouldn’t exercise or workout for sometimes a week or more at a time, my supplements and IV drips came and went in waves whenever I could afford them, and I went from drinking maybe once a month to sometimes once a week. I started getting more and more confident and I also started to forget exactly what it is I am up against. I stopped reading about other GBM fighters that I do not directly speak to because I did not want to categorize myself with them, when in fact we are all in the same boat. GBM’s are hard, really fucking hard. I was simply lying to myself to make my life easier.
This MRI I was reminded that I need to get back on the proper road. I talk to a few other GBM pioneers that are paving the road to a cure and I love all of them. Some of them are doing better than others, but we are all in this together. Reading updates from my fellow ‘blastormers’ put things back into perspective. Seeing these amazing fighters have recurrences was the push I needed. I forgot what I was up against and in my realisation came a sense of panic. What the hell was I doing the past 5 months? Certainly not what I should have been doing.
When I posted on FB and IG asking for prayers and positive vibes, it was honestly out of fear. This was the first MRI in a very long time that I had a decent amount of anxiety. I was getting headaches again and a couple other things that were reminiscent of my pre-surgery days. As it turns out, I am still stable!! All that stress was needed and much appreciated. It was the slap I needed to get me back on track. I am not a normal 29 year old, I am not healthy and I can not pretend like I am. I might look healthy from the outside, but I know what is lingering on the inside and to pretend like it is not there is just idiotic. Seeing all of the people who took the time to like, comment, text, call, message, e-mail, pigeon message, and smoke signal me over positive thoughts and prayers reminded me how many people I am living for now. I can not let myself get lazy, I feel as though I would be letting down so many people if I fail in defeating this nonsense. This is the motivation and the reminder I needed.
Seeing all the love and power behind all the amazing people who support and follow me makes the mental side effects much easier to deal with. I know that no matter what happens I will have a small army by my side ready to help if that time ever comes. Lets all hope we never have to cross that bridge.
As many of you know I try to travel somewhere after each stable MRI, this MRI was extra special because I have had a trip to Fiji planned to watch a friend get married for nearly a year now. I was kinda scared that I might not make it, but now I that I have renewed my lease for the next two months I get to go enjoy Fiji worry and stress free! This has been on my bucket list since the first time I saw pictures of the Fijian beaches. Excited is an understatement, but the first word that comes to mind.
Today my picture and quote are one in the same, click the image to read it all or take a drive to The CAMP in Costa Mesa. Actually go there anyways, you will enjoy it.
Stairs of enlightenment.
And I have to share my favorite photo I took (with my iPhone since I was dumb and didn’t bring my camera). This was my first time to this lookout and by far the best I’ve seen. If you look close enough you can almost see Canada.
May 22, 2014 |
I remember thinking how slow time seemed to move when I was in treatment. Every time I heard someone say, “I can’t believe it’s already (insert month here)” I thought in my mind, “Wow, that’s it?” Time seemed like it purposely was against me. Days were so long, boring and static that at times I felt like there was a small possibility that somehow days got longer. A month seemed like a year and no matter how busy I tried to keep myself, days seemed to drag on. The days that felt normal were always the ones I wanted to slow down and last forever, but I guess that is true for most everyone. I never really realized how big of a difference the speed of life can be. Before cancer I never had a time in my life where I was not completely busy. I went to school, played sports, worked and maintained a healthy, fun and active personal life. Once I was diagnosed everything fell to the wayside and I basically became a couch potato that took every single opportunity to live a normal life in between my utterly stupid treatment schedule. I tried to stay as active as I could and keep my mind occupied with any and everything I could possibly read, write or take a picture of, but even so days dragged on and I felt as if time was an enemy.
The contrast to my life today is night and day. I am now back on the typical mindset of bewilderment that 2014 is already nearly halfway through and Summer is basically already here. My two month breaks in between MRI’s feels like a week and this past MRI seemed like it came around way too soon. Now that I am working again (and went 42 days without a day off) days fly by. I barely have time to let myself have much needed ‘me’ time let alone devote much time to anything other than eating and sleeping (hence the huge gaps in between my updates- Sorry.)
I had my most recent MRI done last Thursday, this was by far the most anxious and scared I have been going into an MRI in a long time. I sometimes get headaches here and there, but I was in a car accident where I was rear-ended on the freeway pretty badly and hit my head pretty hard. After the collision I have pretty much maintained the same terrible headache for sometime. I was also getting slight dizziness here and there along with random symptoms I had not experienced in quite some time. The accident was pretty rough on me and made me a bit hesitant to do some of the things I used to do to maintain normalcy and my overall health before the crash. My diagnosis puts pressure on me in so many ways and falling out of routine scares me, especially in anything that has to do with my health and diet. I have also found myself more and more busy with my work load gaining everyday and less time to make sure what I am eating is something I should be eating. Being diagnosed with a ‘terminal’ cancer makes every decision so much more weighted that I have a legitimate fear of certain foods and when I feel like I am falling out of shape I get scared. This is a double edged sword; On one hand I am always trying to better myself on the inside and out, on the other hand when I get lazy I get creeping anxiety of an un-welcomed return of the little monster. I welcome this anxiety most of the time as it keeps me in check, but I always will long for the days where I tried to maintain a healthy lifestyle simply to be healthy and not to combat a terminal illness.
Going into the MRI this round had all the extra weight on top of an already worried mind and upon the conclusion of the MRI it seemed as though my nightmare was becoming a reality. When the technician was removing me from the MRI machine he inquired, “So are they doing surgery to remove it or something?” First of all, let let preface this by saying this is now the second time a technician running a scan has said something to me in regards to what is in my head. The first time being the initial time I had my very first CT scan. I went into that scan knowing there was something wrong and nearly certain it was a tumor, but I was always holding out for it to be something less severe. This first technician came out and decided to inquire about my symptoms and eventually pin pointed my exact tumor area than followed that up by telling me my doctor would be in contact with me by Monday since the scan was done on a Friday. Needless to say he ruined my last weekend of a ‘normal life.’ I was consumed by his words and all I could think about was what he saw on that scan. That Monday rolled around and my dreaded assumption was verified. This second time was much more hard to hear. Fighting cancer one time is hard enough, I know there is a HUGE possibility this thing can and will come back, but I have always been hoping it would be way down the road. Hearing the technician inquire about surgery made my heart sink, especially after going into it scared already.
After telling him I had already had the procedure done, and the tumor removed he kind of stumbled on his words and began trying to justify whatever it is he saw. ”OH, do you have staples?” Nope. ”Oh well maybe its like a permanent stitch on the inside?” Nope. At this point I simply said show me the scan. I have seen enough of these things to be able to tell what is supposed to be there and what could potentially be bad news. He finally walked me over to the monitor and showed me the scans and sure enough there was a random spot on the screen. I honestly could not be sure one way or another and once again I left in anger that the technician who knows nearly nothing decided to speculate and ruin another weekend of mine. I got to wait another 3 days before talking to a doctor.
My appointment was on Monday and I finally got to speak with my oncologist who’s first sentence was “Looks all good.” I think I asked about 6 times if he was sure before I was convinced that I was indeed still stable. The relief of getting all clears is something I don’t think I can explain. It feels like a weight being removed from every inch of my body and my breathing kind of re-boots itself back into normal breathing after not even realizing I was constantly holding my breathe. The stresses involved with this dumb ass cancer is bad enough, having the added stress of an accident with head trauma after my oncologist explicitly explained that hitting my head would make everything we have done go to shit and idiot technicians that need to learn to keep their mouths shut is not an enjoyable experience. I might have aged 2 years in those 3 days.
Like always though, I keep living. I stay positive no matter what and I think I might have finally passed the point where I can worry about myself anymore. After this last MRI I now think my stress meter has peaked. I don’t know if or when the day will come when this monster returns, but I do know that if or when it does I will be able to face it without blinking. All of these close calls have prepared me for something that I hope I never have to deal with, but my mindset from day one has been to prepare for the worst and hope for the best and to always FIGHT THE GOOD FIGHT.
“All of our sweetest hours fly the fastest.”
A few memories I wish I could replay over and over.
April 7, 2014 |
Another Winter down, if you want to call whatever the last 3 months were Winter! A great perk and a possibly disastrous problem with living in So Cal is we are not subject to the extremes most the other parts of the country get on a yearly basis, but it does make me appreciate traveling to areas that actually do get Winter much more. I went up to Portland for my birthday in February and finally seeing some rain, snow and clouds was an exceptionally nice break from what seemed like a never ending summer here in So Cal. Leaving Portland seems to get harder and harder and this past trip I felt as though the second the plane touched down I was already dreading going back home. There were many reasons for this longing to stay away as long as I could, but the one that nagged at me the hardest was my inability to find a job. I know my capabilities, I know my work ethic and I know what high standards I have set for myself and getting turned down over and over again was defeating to say the least. For a while it seemed as though I would be destined for a career that involves absolutely nothing I have studied, am passionate about or even something that remotely interests me.
After fighting a pretty severe form of cancer, I am more motivated and wanting to work than ever before in my life. I tried doing jobs just to make money, but I found working in environments where I do not need to use my brain and people don’t depend on me for anything was not benefiting me other than making money, in fact I felt as though I was becoming depressed and going to sleep at night knowing I would wake up only to waste another day made me feel extremely defeated and anxious. I was and always will be grateful for the jobs I was offered and the people who helped keep me on my feet along the way, but my brain seemed to have re-wired itself after removing a chunk of it and now I have this nagging and never ending feeling of anxiety that I am wasting my life. I now feel like I am on the clock and there is a little timer ticking down, I don’t know when this timer will expire (and I hope it’s not for another 50 years), but I am also a realist and I know the severity of my condition. I am 16 months stable which is not very common for my ailment, but I have read of many other people making it 2, 3, 5, 6 years before their first recurrence. I am nowhere near out of the woods, in fact I have barely made my way past the first creek and still trying to get my bearings on which direction to head. This is the ultimate driving force making me push harder and dedicate myself to something that can make an impact on this world in whatever way I can with whatever time I have.
As some may have noticed, I have not posted an update in quite a while… Mostly because other than my clean scan a couple weeks ago, rI had nothing good to report and I didn’t want to sound like a negative Nancy, but as of lately things have been looking up. I am finally working again and in a position that has potential to be something where I can actually help grow the company. Anyone need or want some new windows or any type of doors for your home, call me! I also have a side job to make some extra money on the weekends at a friends restaurant in the Orange Circle called Linx- if you are ever in the area on the weekends and want some amazing gourmet hot dogs and craft beers stop in and say hi!
I also have many things to look forward to in the next 5 months. Next weekend I will finallllllllly be going to the Grand Canyon! Only took me 29 years and being less than 6 hours from it my whole life is kind of embarrassing, but better late than never and I think the group we have going will make this a trip that I will never forget so it was worth the wait! My sister is coming into town to visit for her birthday in a couple weeks and who knows what trouble we will find for ourselves! I am also taking a few more trips around California, Portland and Vegas culminating with a trip to Fiji and New Zealand in August!
I am ready to move forward and live my life again. I was hesitant and weary to start… I had to figure some personal feelings out with myself and make sure I was ready for what is next. I think that hesitant energy relayed into my life more than I had ever thought and now that I know where I want to head things are finally starting to get on track. I know there will be many more bumps, bruises and maybe even a surgery or two, but I will always do everything I can to come out on top.
Reflecting back and looking forward I know I will find my way. I have faith and confidence enough in myself and the people I surround myself with that we will all find our ways together. I might be taking a little longer than some and others might take longer than me, but we all will eventually sort it out.
Please keep all those current cancer fighters in your thoughts and prayers and send all the positive vibes you can spare their way!
Practice patience. Practice kindness. Practice optimism. Practice nutrition. Practice positivity. Practice health. Practice Yoga
PS- Sorry about the lack of news regarding The Little Kings Foundation. We are in middle of a rebranding and also redirecting our mission. We have some really exciting news coming in the next couple months which will allow us to work with a much larger group of people afflicted by numerous different ailments! Worry not! All donations already given will still directly go towards the initial mission and vision of the LKF as it was founded. :) :) :)
A few shots from the desert in Washington. (Click the Pictures to see full size)
I was so glad that I wore the proper clothes for our impromptu rock climb.
To scale replica of Stonehenge in Washington.
Sea Stars! <3
February 12, 2014 |
Getting back to a ‘normal’ life after facing what for the most part is considered a terminal cancer is not the easiest of tasks. When I was in treatment I had my routine. I did not worry about anything other than getting healthy again, trying to enjoy every second of everyday and loving my family and friends as much as humanly possible. I was completely focused and knew that I did not want to be another notch to the GBM’s belt. In between the sickness, pain, sleepless nights and anxiety induced by the chemos, the absolute lack of energy and inability to leave my bed at times from the radiation, I was still the most optimistic GBM fighter I could possibly be. I never let any of my negative symptoms keep me down for more than the allotted time I gave each one. Once I felt any spark of energy or break in nausea I forced myself to get busy in anyway I possibly could. Self loathing was removed from my vernacular and I was determined to do anything and everything in my power to not only lift myself up, but try and help anyone else I could. For the first time in a while I was enjoying life on a level I hadn’t in quite some time. Even with all the nasty stuff I had to face, my life was not so bad.
When my treatment abruptly ended I was scared. I lost my comfortable routine and now I had to attempt to re-enter the real world. I was, and still am not sure on how my future would or will play out. Was I supposed to just start working for a paycheck again? Do I take some time off and try to live some of my dreams before it is too late? Will I have another 40 healthy years or another 4 healthy years? I was left with nothing but questions and being 28, (as selfish as it may sound) there are a lot of things I want to do for myself before I leave this planet and now more than ever my future is literally unknown. Anyone can die at any second of any day at any age. We all know this and I knew this from the day I knew death was the end result of life, but now I feel a more pressing type of fear. A fear rooted in the return of a cancer that I despise, resent and respect. I found myself in a weird limbo where I was stable, yet I still knew the cancer is still in my brain slowly, silently trying to end my life from the inside.
I thought really hard about just booking a flight and going to the most amazing beach I could find and spending a month doing nothing but surfing and relaxing, but the more I thought about it the less appealing the idea became. I did not feel like I deserved a vacation, all I really did was what anyone else in their right mind would do and that was fight for my life. Leaving just to get away would serve no purpose to anyone but myself and now I am more motivated than ever to make something of my existence here. I didn’t earn a vacation so I could not justify taking one just to get away. I have no doubt one day I will do everything I want and aspire to do, but right now I need to get my life back on track again. So that was my decision, picking up the pieces and getting my life back on track and trying to pick up where I left off (I didn’t have too much of a choice seeing as how I ran out of money and credit limit anyways!) But I knew I wanted to start my life again and being on a beach in some tropic location was not starting my life, it would only slow me down. I want to work and more specifically I want to help others. I am now 14 months out of surgery and 6 months out of treatment and finally starting to get my life going in the right direction.
This direction comes with confidence and confidence builds comfort. After 14 months of stability I am getting more complacent and relaxed in my lifestyle. I am not eating quite as well as I was, I don’t always take time out of my days to appreciate the small random nuances of beauty in life we often ignore or don’t even notice and I am finding that I am not as happy as I was 10 months ago. Good news though, that will all change. I am refocussing my life and I am turning 29 on Sunday. This will be my last year of my 20′s and I plan to make some extreme moves before I hit my third decade of life. Many of the wheels have already been set in motion and I am no longer waiting for anything or anyone. My future no longer has any guarantees and I need to make sure I have no regrets if this little monster ever decides to make an encore.
Tuesday I leave for Portland to celebrate mine and my sisters birthdays which are a day apart, I will be there for a week and upon my return another new life starts. A new life refocused with new motivation, new goals and aspirations, but the same purpose. I have made a lot of changes for the better and I will continue to strive to better myself in any and every way possible, love harder, work harder, and inspire others. This is my driving force in life and NOTHING else matters. This is what makes me happy and I know if I dedicate myself 100% to what I set out to do I will always be happy and failure can never be an option.
Everyday is a chance to better yourself.
When thinking about 2014 I get excited about the endless possibilities it holds. A blank slate waiting for my next chapter to be written.
Still have plenty of shirts up in the ‘Support Store’ if anyone wants to help in the battle!
January 16, 2014 |
I felt like I was getting better dealing with the stresses of MRI’s every two months. My last MRI in November I was able to stay quite confident and not stress as much as the previous few. That all completely went out the window these last 2 weeks.
I seem to get this build up on anxiety leading up to my scans. I get more into my head and everything becomes a symptom. These last two weeks have been extremely hot, windy and dry. I used have fairly bad allergies which seemed to diminish when I changed my diet and lifestyle, but the last few weeks I started getting headaches again. Don’t get me wrong I still get headaches, but they are typically seldom, few and far in between. Leading up to my MRI done on Tuesday night, they started getting worse and worse. It seemed as though the closer I go to that giant tunnel the more my head wanted to remind me just what I was in for. I tried not to focus on them, but lets be honest… Impossible.
Like I always do I toughed it out, stayed strong, confident, a little nervous, and went in for my MRI. Like always, once I got in that little tunnel and the all too familiar pattern of clicks, beeps, vibrations, buzzes and what I can only describe as laser sounds I was able to breathe again. After having my 10th-15th? MRI I now have the entire process nearly memorized. It starts out with a few small clicks, then turns into what sounds like a GIANT cellphone vibrating on a table with some random clicks strewn in. The next part switches to an almost ping pong ball sound with clicks that you can hear coming from different areas of the tunnel. These go back and forth for about 15 minutes until the laser sounds kick in. Once the laser sounds get going the actual bench I am laying on begins to vibrate in sequence with the laser sounds, only a second or two with about a 4 second delay in between. The machine then takes about a 30 second break and starts on what sounds like what you heard as a child watching Bill Nye the Science Guy when he had his electricity experiments (picture those two large metallic poles separated by about a foot with the bolt of electricity slowly climbing up to the top and disappearing into nothing). A few minutes of this sound then the technician comes in and injects gadolinium dye into me for the final 10 minutes. We start from the beginning again, but it changes to a constant buzz towards the end with clicks starting in sequence then slowly working their way to an irregular pattern only to end in sequence again. Laying in that chamber I feel at peace, it might sounds strange but for some reason when I am there I have the assurance that I will at least have an answer. The hardest part about cancer is simply not knowing one way or the other. I have accepted whatever fate has in store for me, but having to stress every 8 weeks waiting for an answer grows tiring.
Once I complete my scans I typically am able to leave with a copy of the MRI so I can go over it at home. I am in no way formerly trained in anything that has to do with reading MRI’s, but it doesn’t take a PHD to look at two different images and find differences. This MRI I was not so lucky however. I scheduled my MRI for 8pm, which I always do- this time I got there and they were running over an hour behind due to emergency MRI’s that had to be done. By the time I went in and completed my scan, the IT guy had already gone home. No CD for Ryan. To add to the stress my oncologist was at a conference yesterday so I got to wait a whole extra day to find out if my lease on a ‘normal’ life had been renewed for another 8 weeks.
I got home after my MRI and had dinner and was relaxing when i scratched the back of my neck. What I felt sent me in a tumble of anxiety, flashbacks and panic. There was a pretty significant 2-3 cm lump and a smaller tiny pimple like lump on the back of my neck where I know there are tons of lymph nodes. Now with Primary brain tumor (meaning the cancer started in your brain and did not metastasis there) there is almost no chance for the cancer to leave your brain. That is not what I was worried about.
When I signed up for the chemo, radiation and trial drug I had to sign about 30 documents and waivers saying that I acknowledge the potential for almost any and everything under the sun to occur post treatment and one of the things they made pretty clear was the fact that all these treatments could in turn cause another form of cancer to occur, typically a blood born cancer which most always affects lymph nodes… Well when you have Grade IV cancer everything is bad news- especially a lump that turned up out of nowhere. After stressing, worrying and trying to calm myself down I finally was able to go to sleep- for a couple hours. I ‘woke’ up around 6:15 and just laid in bed till around 7. I tried eating a little breakfast, but that was not going to happen until I got some answers so I went down to visit Dr. E and asked her opinion on whether or not I should go see my oncologist. I was able to see her around 9:30 and after about 5 minutes she assured me that it is nothing serious and most likely drainage from both the dye they inject into me during the MRI to help differentiate tumor from normal tissue along with some dry skin/acne I had on my scalp. This was obviously a huge relief, but now I had to wait another 24 hours to hear about how my scan looks.
Today I went in for my second ever teleconference with my oncologist (this saves me from having to drive to LA and back) and he gave me the all clear! Another 2 months of life granted. Each MRI I get a little more confident, but not over confident. Each clean scan adds a notch on belt and better vision of the future. Hearing him say the word “stable” is like the most magnificent music to my ears. I consider myself lucky, I get Christmas every 8 weeks!
When I was panicking about the lump on the back of my neck I lost my focus. I have been so strong through all of this and I let a tiny little bump sway me. I kept telling myself it was nothing and I think I honestly did believe myself. I have been pretty much spot on with everything that has to do with this cancer from the second I realized something was off in my head, but this bump threw me. All I could picture were those pages of documents talking about all the potential for other cancers and I got scared. I was genuinely scared for the first time since the day I got the call from my primary care doctor at work that hot day in October. After calming down I started thinking of the road that I have been on for the last 14+ months. Things have been terribly hard and I was able to stay strong. I went through a craniotomy, radiation, 2 chemos, blood counts almost too low to function, countless IV’s, swallowed about a million pills, dealt with all the side effects that go along with it while trying to find a job, work and maintain some type of normalcy and all that time I never flinched. Yes I got nervous, but nothing like how I was after feeling that lump. It took me a while to settle down, but once I did I realized what I had forgotten. I forgot the most important thing that has kept me strong this whole time and that is the fact that I have already accepted my fate- no matter what it is. The day I found out what type of cancer I had was rough, but before the sun set that night about a year ago I made a vow that no matter vow to myself that no matter how this plays out I will stay strong till the end, not only for myself, but for those I love and those whom love me. I forgot that in a moment of weakness and once I remembered what I had forgot I felt peace again.
I want to say a special thanks to everyone at Stupid Cancer for sharing my story (if you haven’t yet, check them out on FB at https://www.facebook.com/stupidcancer or www.stupidcancer.org and thanks for all who have supported me from day one and those who are just joining! Have a great weekend everyone! :)
“The harder the struggle, the more glorious the outcome.”
Channeling our 70′s and 80′s past lives disco rollerskating Yea, they still have a couple!
January 6, 2014 |
Excitement… Maybe not the right word, but the first that comes to mind when looking forward to 2014. 2013 was a different year for me. By different I don’t want to say it was a bad year, but it certainly was not a good year. 2013 had it’s fair sure of troubles and I certainly have grown from these trials. But 2013 also introduced me to some of the most amazing people I have ever met. I lost a few friends, but for every friend I lost I gained two. No one can ever replace a lost friend, but it is a great feeling meeting other amazing people who do noting but better you as a person and push you in all your endeavors. In 2013 I realized just how important it is to surround yourself with inspiring, ambitious, courageous, and LOVING people with nothing but positive energy. People are in your lives for exactly the right amount of time they need to be; some for years, maybe decades before you have a falling out or they pass, others maybe only a day or a few hours and they are just as important and make just as big of an impact as the latter. I learned that your mind, spirit and personality are far more important than your body. I grew to become a more whole and better human and I learned to let go of fear and only entertain hapiness.
I did a lot of thinking and reflecting in 2013. I thought a lot about my life, my future, death, love, and and my outlook on what truly quantifies a persons time spent on earth. I have a little black book that I put my thoughts in that might not be suitable for the public viewing. When I write publicly on my blog I try to only post and write about all the positivity I have through my battle, which is almost all of the time. But every once in a while I do ware and feel like I am breaking, this little black book allows me to privately vent and get my frustrations out without sounding like a crazy drama queen to all of you. I went back and read through some of the pages and when I was first diagnosed there was a lot of negativity. I write little ‘sentences’ that are all just emotions and feelings mixed in with a lot of profanity and little sketches. Early on it was almost hard to re-read, but as time went on and I accepted my new life I saw a fairly dramatic shift into a positive light. Once I changed my outlook (this was very early on after my diagnosis) and decided to make every negative aspect of my life into some sort of positive, not only did my writing become much more positive, but the words were actually more legible and easier to read (early on my writing looked as if I was barely learning how to write out the alphabet.) Each page forward was cleaner and more insightful, each page became more and more grateful and less self loathing. My personal reflections were almost a direct reflection of my personality at the time. When I was fresh out of the hospital and on copious amounts of steroids, there was a lot of anger. When I was living in LA going through treatment there was a lot of sadness, but when I was able to come home and be with family and friends it became a whole different story. Every time I traveled or visited my family it was nothing but positivity and optimism and as the days passed and the summer days went on I actually enjoyed reading the pages. There were still a few pages of darkness that slipped in as this road has been brutal, but I think thats to be expected with the amount of frustrations that go into trying to balance so many things at once. As the Holidays approached I expected the pages to turn dark again, but to my surprise it was to the contrary.
For the last 9 years I typically would get a little anti when it came to the holidays. My mother passed right before Thanksgiving and her birthday is in January. Christmas was and never will be the same without my mom and being the ultimate momma’s boy I still miss her immensely during the holiday season. This year was a little bit different though. For the first time in about 9 years I actually felt at peace this year. I felt like my mom was with me more than ever and this allowed me to enjoy the season much more than I have in a long time.
I had an amazing Christmas visiting both mine and Natashia’s families which led into what was by far one of the best New Year’s I have had in at least the last 10 years. This Christmas was not an epic showering of gifts and in fact I think I only opened maybe 5 presents and unfortunately I couldn’t really afford to buy much so I made most of my gifts, but that didn’t matter. It was the fact that we were together and ‘healthy’ just enjoying company. When New Year’s Eve rolled around we didn’t have any plans and we decided to stop by a friends house who was having a party. A few minutes after we arrived about 20 friends of mine who neither knew or had ever met the host of the party came in with on of their friends who is friends with the host. I had no intention of staying out late, but I ended up staying out VERY LATE. For the first time in over a year I was out till past 2:30 am. I did not go to sleep till almost 4 am! I have had plenty of sleepless nights this past year, but this was the first sleepless night that I did not want to end! I got home and reflected about the past year. All the memories I made, people I met, friends I lost and I was genuinely exited for 2014.
I have been noticing a lot of changes. People seem to be happier, my friends are doing amazing things with their careers and personal relationships. Everyday I see someone getting married, having a child or getting engaged. I am re-emerging myself into the social scene as I was pretty much a shut in for 2013 once the sun went down. I was as active as I could be during the day, but I hardly ever went out at night. I am trying to change that and re-introduce myself to what it is like to be in your 20′s and the best part is I don’t even need alcohol to have fun. I am living healthier than ever and surrounding myself with as much positive energy and optimism as I can find. I am getting older and I simply have neither the time nor the energy to hold grudges anymore. I am living in the now and in the now every moment is a fresh start.
2014 WILL be a great year. January will be an exceptionally hard month working as much as I can, managing my ongoing treatments, trying to launch the foundation and taking a 5 unit intersession class to finally finish my undergraduate work and get my BA in Business. I won’t have much time to do anything, but come February I hope to have a new job, a new outlook and another new lease on life as my next bi-monthy MRI is scheduled for the middle of January. Excitement might actually be the right word now that I think about it, because that is all I feel.
I have never been one to make resolutions, but this year I think we should all make a simple and yet difficult resolution: simply be a better person in every way possible. Lets be more humble and grateful for everything we get to do on a daily basis. There are so many people in this world who would kill to be anyone of us and yet we still are often still not satisfied. New Year’s resolutions typically have to do with self improvement, I propose a large scale resolution to make other people’s lives better. When you help someone better themselves, you help yourself at the same time. Happy New Year, Merry Christmas and lets make 2014 EPIC! 2 + 0 + 1 + 4 = 7, and you know what they say about 7?!
“You must not under any pretense allow your mind to dwell on any thought that is not positive, constructive, optimistic or kind.” Emmett Fox
Just a few of my awesome days in 2013!!!
December 17, 2013 |
One year that seems like a lifetime. This time last year I was laying on a table with my scalp cut open and a chunk of my skull sitting on a table. My doctor was filleting my brain millimeter by millimeter removing the deadly cancer tumor that wanted to take up residency in my thoughts. It had grown to nearly the size of a baseball before it was finally eradicated. After about 5 or 6 hours of resection he replaced my skull, threw a couple screws in, stapled me up and sent me into the ICU to recover. From the second I opened my eyes my new life began and for better or worse I was now a cancer patient.
I woke up already knowing it was going to be some form of cancer, I just prayed it was a low grade slow growing form. What it ended up being was just about as bad as cancer can get. I never wavered though, in fact I embraced it. I walked into my onco’s office the day of my appointment to find out what exactly it was they just removed from my brain and sitting right on her desk in plain site was my diagnostic report and before she could even tell me what it is I already saw the words Glioblastoma Multiforme written under ‘Diagnosis.’ I gritted my teeth and sat in the chair and let her break the news to me as if I didn’t already know. As she spoke to me I only partially listened as I was already planning my attack from the hours upon hours of research I had done on GBM’s already. From the moment I found out I had a tumor I decided to plan for the worst and hope for the best. In my opinion, and I think many would agree, it is much easier to hear good news after preparing for bad news opposed to hearing bad news after preparing for good news. So I was not surprised, I had been preparing for that news since the day after I found out I had a tumor. All I did was sit silently and let her carry on with what has to be one of the most difficult conversations to be held with an almost complete stranger. I could barely break the news to my family, not sure how she does it to complete strangers day in and day out.
From that day forward I looked at my new life with a different vision. I felt like I had a bad hand dealt to me and was determined to do any and everything I could to rectify the situation. I never panicked, I never let myself get too down, I surrounded myself with love, friends and happiness and I got on with it. I did what any other human in my shoes would do and I fought like hell to survive.
When I first found out I had a tumor I was dead set on not going through what I watched my mother go through in her battle with breast cancer that ended up taking her life. The chemo was worse than the caner and I did not want to suffer the way that she did. When I saw those two little words on that piece of paper in the my doctor’s office, my mind immediately changed. I knew the chemo and radiation were not a cure or even close to one. All it would do is buy me some extra time, but I wanted to attack the cancer with everything I possibly could- so I got on with it.
I moved into a depressing one bedroom apartment in Hollywood in the middle of the Winter so I could be close to the radiation treatment center, I changed my diet and lifestyle, I cut out as much negativity from my life as I could, I simplified and I fought. Initially it was both chemo and radiation, chemo every single day for 45 days straight and 4 times a month I got to double up with two different chemos along with radiation Monday-Friday. After a couple months the radiation ended and my chemo turned into a cycle of 5 days on and 23 days off along with 4 days of Velcade chemotherapy the first two weeks of each cycle. Rough? yes. The worst was always the day after I did both chemos. It was like clockwork, waking up throughout the entire night covered in sweat, joint pains, nausea all the time, no appetite and all the other fun stuff that goes along with that toxic drug they call a therapy.
But every month after I finished my last injection I forced myself to do something. I traveled and visited my family as much as I could. I went to a young adult cancer summit in Las Vegas a mere 4 months after my surgery and a few weeks after I ended my radiation. I re-introduced myself to my passion of photography. I surfed as much as my blood counts would allow. I learned to do yoga. I met more amazing people. I started a foundation to support other people in the same shoes as me. I spent a day with my hero and now angel. I remained positive no matter what and I got on with it.
My new life is exactly that, new. I am still learning to deal with the daily headaches which I hope one day decide to seize. I still have lingering symptoms from the extensive chemo and radiation which include 24 hours of ‘floaters’ in my vision (which sucks because after my surgery I remember opening my eyes and feeling like I could see again for the first time in a long time. The tumor was pressing on an area of my brain that was causing my vision to slowly deteriorate and I never noticed it because it happened so gradually. When I opened my eyes and the pressure was gone I felt like I was seeing colors for the first time- it is hard to explain, but it was brilliant,) constant joint pain in my knees and elbows, I have all but lost most of my patience which was always one of my better gifts.
But my new life also brings me joy. I embrace my cancer and I love it for what it did for me, but I despise it for trying to kill me. I live in the now and everyday I am grateful to open my eyes. I walk out of my front door and the first thing I do is take the biggest, deepest breathe of fresh air, smile and say thanks. It put me in a place in my life where I feel like I am making a little difference in this big world. I have direction and hope to continue on this path for the next 65 years! The trouble is, there are not too many people who make it 2 years let alone 60+.
I am doing EXCEPTIONALLY well for what I have. I am already in a fairly small population that made it one year without a recurrence, but I am FAAAAR from out of the woods. I hear about people going 18, 22, 28- 36 months before their first recurrence, not a lot of them, but they are out there. I only know of maybe half a dozen or so people that have made it over 5 years and only one person who has gone over 5 years with no recurrences at all- she is and always will be my inspiration.
Everyone always asks me, “So are you now in remission.” Technically there is no cancer growth visible. I will be doing MRI’s every 2 months for the next who knows how many years to make sure it continues this way and hopefully they remain the same- “No new growth,” my new favorite 3 words. There are still cancer cells growing in my head and there always will be, they are just growing so slow right now that my immune system is able to gobble them up before they start growing into a tumor just like you. We all have cancer cells in our bodies growing all the time. So is that called remission? I read that if I can make it 10 years without a recurrence THAN I am ‘population based cured.’ That is when I will consider myself in remission. Nine years from today I will be in remission and not a day sooner. I have seen first hand on so many different occasions how fast this can go south. I am healthy as a horse today, but there is no telling where I will be 6 months from now.
It has been a long and trying year. There have been amazing highs and terrible lows. I made more friends and experienced more this year than the previous dozen. My life is obviously never going to be the same and I wouldn’t have it any other way. I often think of that question that everyone is inevitably asked at least once in their life, “If you could know the exact day of your death, would you want to know?” I never in my life answered yes to that question, ask me again today and I might have a different answer.
There is absolutely no way I would have made it this far without help from all of you. I have a lot of people to thank and beating this crap is the only way I will have enough time to thank everyone the way that I want to. Therefore, you all are my motivation. So thank you for helping me live and I hope you continue to help because I definitely need it.
I would like to invite everyone to check out my personal site ryansepicbattle.com which will be an outreach and advocacy site for others fighting GBM’s. It was also be the source of my blog going forward and my blogspot account will be taken down, so bookmark the new one if you are keeping up with me. Also would be so grateful if you shared this, it was a lot of work and I think it can help some people! With the financial help from my family and amazing girlfriend the site was made by Neil Ballard at ENBY DESIGNS. I designed a shirt to try and raise some more money for my now 9 year battle against my GBM. It is simple and an original saying that I live my life by now. For those of you who donated already, your shirts will be in the mail by next week. Everyone else feel free to pick one up and help me continue in my battle. Anyone wanting to help out and donate can do so through this site as well.
365 Days ago.
“Fear is fake live now.”
December 4, 2013 |
While living in LA I started doing something upon a friends recommendation. I noticed I was slowly wearing down living in the city of Angels in the respectively cold Southern California Winter. Everyday walking to and from the hospital two sometimes three times a day only to arrive back at an empty small and dark apartment which was not the most hospitable environment and full of other cancer fighters- one of which died while I was living there. They were all exceptionally older than myself and when we encountered one another we would merely silently nod, smile and acknowledged that we were in the same war waging inside ourselves. Not a single word was ever spoken to any of my neighbors, but we all had the bond of battling for our lives. Living in this environment was not a great way to stay mentally healthy, but it also made me face the reality and severity of what I was up against.
One day I went and had lunch with a friend Greyson and ironically at a cafe called Gratitude. After lunch we were chatting for a while and he gave me a couple books to read (I’ll get them back to you or they might show up on your doorstep from Amazon.) I was telling him how my living situation was not ideal and I was sometimes not interested in much other than sleeping. This was early on in my treatment and I knew I had a long way to go so I needed to rectify the situation before I let myself get too down. I had managed to stay so positive through all the nonsense I had gone through the previous 2 and half months and I did not want that to change. He suggested something that he had started doing and found it helped him appreciate everything in life a little bit more. His suggestion was to wake up every morning and think of 5 things you are grateful for and if you can’t think of 5, think of 4 or 3 or 2 or 1… It could be anything from the bed you sleep in to the love you share with your family of friends. I thought about it and it made sense, I had been living in a constant state of negative thoughts when I needed to change my mind into a positive mindset. So the next day I woke up and the first thing I was grateful for was exactly the thing that was wearing me down. I was grateful that I had an apartment walking distance to my radiation treatment. I did not have to commute an hour back and forth everyday and no more traffic!
From that day forward I started my day with gratitude instead of pessimism. I would wake everyday and find so many things to be grateful for that sometimes I would be laying in bed for a few minutes before I was done. Other times I would only think of one or two things. Most of the time I would think of things from the day before or the coming days ahead. Some days I would forget, but I try my hardest not to. The one thing I have always been grateful for was the love of my family, friends and my girlfriend, so everyday that was on my list.
With the Thanksgiving holiday just passing, it got me thinking more and more. I saw a lot of people posting about what they are thankful for and for me I have been doing this nearly everyday since the day Greyson recommended I give it a try. Laying in bed Thanksgiving night I was trying to really think about what I am exceptionally grateful for. I wanted to figure out what shapes me as a human and why I am who I am. I am grateful for my mother who helped prepare me for this road and watching her suffer and go through what she did helped mentally prepare me for the chemo days and if it turns south, I already have seen and know what to expect. I went to South Africa and being there definitely changed my perspective on life and helped to start shaping me to who I am today, I am and will always be grateful for that time spent there and without that experience I know for a fact I would not have been able to deal with my diagnosis the way I am. I am grateful for a lot of things and this past year has proven to shed a lot of light on my life so what I am most grateful for is Grade IV Astrocytoma aka Glioblastoma Multiforme.
I am utterly and unequivocally grateful for the cancer that is currently trying it’s hardest to end my life. Seems ironic, but without this cancer I would not be the person I am today. Being diagnosed led me onto this road, a road that is exceptionally frustrating, difficult, sad, depressing, joyous and miraculous. It has introduced me to some of the most amazing, inspiring and beautiful people I have ever met in my life. It has guided me to a point where I finally feel like I am doing something that will actually make a small difference in this big world we live in. I have direction and a lifelong vision of what I want my life to look like. I am no longer wandering aimlessly in the woods trying to find my way out, I am chopping down the trees and paving my own path all while my best friend slash worst enemy is trying to carry out execution orders on not only myself, but itself in the process. My cancer helped me find the people in my life who need to be in my life and weeded out the people in my life which needed to vacate. My cancer has brought me closer to my family and strengthened the relationships with the people I care about and love the most. Yes, there have been tremendous lows and times where I wish I never had this little monster in my head, but like anything in life that is exceptionally important and powerful it is not easy, but in the long run it makes us better and stronger.
Even if I do not make it to 30 like the other 90%+ that don’t last 2 years, I know in my heart that I have done some good with the time I had. I lived selfless and truly wanted to make a difference and up until December of last year I don’t know if I can honestly say that I have lived that way everyday. There were times, but for the most part I was more concerned about Ryan and less concerned about others. Thanksgiving is one day when we take time to be grateful, allow me to recommend the advice that was given to me and start making everyday a day to be grateful.
“I respect my enemy, I want to understand him and I am envious of his complexity. My enemy is my only fear and in that fear there is love. When I truly understand my enemy, in that moment I will destroy him.”
This is a semi-original quote and anyone who is familiar with the book ‘Enders Game’ will know where I was inspired.
JUST A FEW OF THE SO MANY PEOPLE I AM GRATEFUL TO HAVE IN MY LIFE