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Getting back to life.

February 12, 2014 Uncategorized

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.  

2014-Calendar-Printable-72

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. 

FTGF,
Ryan
xo

Still have plenty of shirts up in the ‘Support Store’ if anyone wants to help in the battle!

 




7 thoughts on “Getting back to life.

  • Gem

    Dear Ryan, just wanted to leave a message to say how inspiring I find your blog. I was informed about your blog through my lovely Mum. I wanted to leave you a message to wish you all the very best with your fight and to say thank you for staying so positive, it’s people like you who make life all the better.

    I was diagnosed with a brain tumour aged 28 in August last year, to say it was a shock is an understatement having spent some time previously worrying about getting ‘really sick’ with a brain tumour at the top of my ‘terrifying’ list. Anyways low and behold it happened and after an awake craniotomy I was diagnosed with a grade 2 Oligoastrocytoma. I felt grateful that it was a mixed glioma as initially we were told it was grade 1 and very treatable but I decided to go for a second opinion and then we were told it was actually intrinsic and more likely a grade 2 or 3. I had the courage to ask at my second opinion what the tumour could be and being told ‘astrocytoma’ was frightening (mainly due to all the misinformation we had been given). I know what I have is classed as incurable however I am pleased to say I had a decent amount of resection and my Neurosurgeon is confident that this technique can change the natural history of the disease so I am just doing all I can to stay healthy with the hope that maybe the day will come for a cure or something else.

    I am a fellow blogger and I’ve met some great people along the way through this. For me knowing I am perhaps helping others makes me feel better about the whole situation, you’re more than welcome to take a look at my blog if you would like to. I am also a memeber of my local BT group here in the UK and we all have different types and grades of BT ranging from Benign, through to GBMs and Grade 4 tumours. It’s not an easy journey at times and like you I have seen many distressing and difficult things too but at the same time it’s good to get together, talk about how we feel and also just know that the person opposite you really knows how you feel. For me it’s a comfort during difficult times (albeit cold due to the nature of the beast).

    I would like to find something in life now that I really have a passion for. Again I am inspired by the work you have done and continue to do with the Little Kings foundation. I am considering perhaps retraining in a holistic therapy or trying to do something that really gives back. I would also like to travel a bit more as I feel like I always thought “I’ll travel someday soon” and you know what that day never came previously because there was always an excuse so now I think why not…I guess watch this space.

    Best Wishes,
    Gemma X


    • Ryan Coffelt

      Gemma,

      Please share your blog with me. I would love to read and keep up with you! All the best to yo and your family!

      FTGF,
      Ryan


      • Gem

        Hi Ryan, My blog is called ‘The Extermination of Bertie Tickle’- we called my tumour Bertie Tickle as it wasn’t so scary to talk about then with some of my younger family and also for friends- I just felt like it broke down that barrier to a degree. Here is the link: http://theexterminationofbertietickle.blogspot.co.uk/

        Also forgot to say Happy Birthday- not sure if it’s been yet but if so I hope you had a good day.

        Gemma


  • katie s.

    Hi Ryan, I found your blog through my friend Jessica, a follower of yours and fellow blogger. Jess and I have the same tumor, an anaplastic astrocytoma, grade 3, with the IDH1 mutation, and the same doctors. Hers is on the left while mine is on the right frontal lobe. I was diagnosed May 18th 2012. I was 42 and a mother of a 6 year old boy and a one year old girl. I first went to Cedars Sinai and saw Dr. Black who did a crainiotomy but was unsuccessful at removing any tumor and told us it was inoperable. I also did radiation and Temodar but became allergic to the chemo after 5 weeks and had to stop. I switched to CCNU but my blood counts dropped too low and I had to stop that as well. The radiation caused my tumor and brain to swell terribly and I went through hell with seizures every day, one lasting 10 minutes on the floor of a restaurant while I was fully conscious. I went on Avastin for a few months which brought the swelling down and I was stable for awhile. My Oncologist at Cedars recommended I go to UCLA and see Dr. Liau, he felt that she could get it out. To make a long story short last August she did my second crainiotomy and removed my whole tumor. Right now I am on 3 Meds for seizures: Keppra, Vimpat and Clonopin, and I am weaning off of the Clonopin. My MRI’s have been stable since August. My vision was also affected by radiation and I have a large bald spot on my head. I have very little fine motor skills in my left hand but other than that, except for PTSD from the seizures I am ok. I’m on a similar diet as you and I have a blog. The link is http://www.carepages.com/carepages/katiesbrain, hope to hear from you! Katie


  • Stephen Hamrock

    Ryan….
    I have wondered for some time now how you are doing. We didn’t get a chance to say “See ya later…” when you left the business.
    Your writing is inspirational and gets to the reality of your situation…..and the reality of all those who have had to fight a life threatening disease or condition.
    My latest scans (last February) have come up negative….heck, I am healthier now than I was three years ago before the heart bypass and the tumor removal in April and May of 2011.

    The new site looks great!

    Steve


    • Ryan Coffelt

      Hey Steve,

      Yea, I left pretty quick cause I had to switch my entire school schedule 3 days before the semester started because the night class I was signed up for got dropped so I had to switch to the day class, but I told them to call me anytime you guys needed any help or got really busy again so I thought I would be back a couple more times. But it is good to hear from you, and amazing news on the scans! I had an all clear on my last scan done a week ago as well!

      I also want to say thanks again, you have really been a huge help through all of this in so many different ways and really want you to know how much I appreciate all the help. Glad to say I am starting a new job on Monday actually using my degree finally and Ryan and I are making some changes in regards to the foundation. So theres going to be some awesome changes coming soon!


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