Saturday, March 23, 2013

5 months

ago my life changed.  I got a cal at work and my world got flipped, turned upside down.  It is still strange and foreign to me and this battle is far from over, in fact it has just begun.

I have never been able to sit still, I don't call it ADD because I have no problem focusing or paying attention, I simply always felt as if I was wasting my time by not doing anything.  I sometimes have a hard time watching television shows because I feel like I am wasting time not being productive for myself or someone else, and this was before I was diagnosed.  I also know that part of the reason I felt so wasteful in doing nothing was because I always knew I was meant for something, anything more than what I was in life.  After I was diagnosed, this multiplied by about a thousand which is quite troublesome and contradictory to what every doctor suggests I do.  They all want me to heal, not be active and stay in bed.  There is a problem with this, because laying in bed now unless it is past 10pm or before 9am gives me anxiety.  I am 99% sure I will beat this and be an exception, but in the back of my mind I CAN NOT deny what I am up against.  I know the statistics, and I know that this will be a part of me for the rest of my life.  I also know that what I have put into my body these last 3 months will almost certainly lead to an earlier death than anyone would hope for.  I really had no choice in the matter and I accept that, but I am hoping and praying I still get at least another 30 years out of this thing we call life, but even that is not guaranteed.

Yesterday was the 5 month 'anniversary' from the day I found out I had tumor slightly larger than a golfball in my head.  Yesterday was also supposed to be the last day of my second round of my chemo injection, until it was not.  I drove out to UCLA, which after a nice detour and quick tour of South Central due to my fathers uncanny navigation skills led us astray for about 30 minutes turned out to be the longest drive to LA ever.  We arrived at my doctor and I was already feeling quite drained, nauseated and weak.  My nurse came in and said my blood work which I had done on Tuesday came back low and they wanted to re-test to see if it had gone back up in the past 4 days at all.  Well after my 247th blood withdrawal the results came back far worse than they were on Tuesday.  My white blood cells had dropped to under 1.5 and my total immune system counts were down to .7 where the .5 mark is the panic button.  This is by far the lowest my counts have ever been and now I realized why I felt so terrible.  I was told my counts were far too low to continue on the chemo and I needed a break.  If I continue to trend downward, they would have to take counteractive measures to help boost my immune system back into shape and so, I am now BUBBLE BOY!  I will re-test again on Monday to see where my counts are and I hope they start working their way back up because from what I hear about the counteraction methods they have to boost immune systems, they do not sound like fun.

This new 'bubble boy' lifestyle I will live for the next few days is not what I had planned for this weekend.  I try my hardest to stay busy and productive with every second of every day and sitting around now more than ever makes me feel like I am literally wasting my life.  On top of that, I can't even exercise or do anything active because my body is fighting a major internal war and needs all the energy it can muster and there is absolutely no extra fuel in my body right now for external activity.  I can not see friends and for the most part I feel like leaving my bedroom could be dangerous.  (I now have a new understanding for people suffering from agoraphobia!)

No, this was not the news I wanted to hear and after all of the good things that have happened in the last month, this is just a minor setback and to be honest should have happened long ago.  Most everyone faces this hurdle at some point during intense chemotherapy treatment and I was lucky to go as long as I did before having to deal with it.  I will be just fine and I am certain that when I re-test on Monday I will be right as rain and back to my 'normal' life again.  The only thing is they wanted to increase my chemotherapy dosage AGAIN and I can guarantee that will not happen.  I am willing to do anything to beat this, but putting myself into a potentially life threatening state due to treatment seems kinda counter productive, right?

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On a side note about The Little Kings Foundation:
We have been progressing steadily, but slowly.  We want to figure out the best and most sustainable option for our foundation that will also allow us to be most productive and beneficial to our mission.  We have been talking with lawyers, other similar foundations and countless people who have been of immense help to Ryan and myself.  I am a grand optimist and I know that, I also know the reality of most non-profit foundations and the road that they usually lead down, but I think with all of your help and the amazing support of some amazing people- The Little Kings Foundation has the potential to be something very big.  I hope one day it can be a platform to help every young adult facing a tough cancer live his or her life to the fullest.  We have nearly nailed down our logo and things are moving along nicely.  It is only a matter of time before we start our little part in something big and I hope you all will want to join us.

Have AN AMAZING WEEKEND!!!!  Tell your friends you love them and compliment everyone who you encounter.

FTGF,
Ryan
xo

We can't always change the world alone, but we can play our little part in something big and try like hell.

Me and Iggy are gonne be BBEEESSSTTTTT friends for a couple days!




Thursday, March 14, 2013

A note on my diet.

I have seen many people that I have not seen a very long time recently and yes I have cancer and yes I have lost weight.  The reason I lost weight is because of the cancer, but not necessarily why you would think.  Most cancer patients lose weight because they are too sick to eat or simply have no appetite.  This is not the case for myself.  My appetite has not changed since the day I was diagnosed and if anything, I am now taking in more calories than I ever have.  The difference is I now know what I am eating.  People change their diets for a myriad of reasons, I changed my diet to save my life.

My new diet consists of only the basics:  I eat very lean meats (chicken, and bison meat preferred behind white fishes and tunas.)  I eat AND juice vegetables only (no fruit at all since my specific cancer needs fructose to thrive and fructose is the natural sugar in fruit.)  I get a lot of good fats in avocados, extra virgin olive oils, raw and salted nuts and 'clean oil' fried foods.  (Extra virgin olive oil is the best for your body.)  I now eat 4 or 5 times throughout the day instead of two or three big meals. (5 small meals so my body is always digesting as opposed to starting and stopping the process over and over.)  I EAT NO SUGAR, I LIMIT MY CARB INTAKE TO UNDER 50 CARBS PER DAY (basically 2 pieces of bread and im done.) I DRINK ONLY ONE SMALL GLASS OF WHISKEY OR TEQUILA A WEEK, I DRINK NO BEER, I DRINK NO JUICE AND I NOW DRINK OVER 80 OUNCES OF ALKALINE WATER A DAY.  I have a glass of hot peppermint or green tea when I need some flavor in my beverage and I am content.

This 'diet' is in fact not a diet at all.  I am finally for the first time in my life eating perfectly healthy.  I cut out all processed, gmo, preserved and pesticide filled foods and I have not sat in a drive thru since diagnosis.  So yes, I have lost weight, but I am stronger now than I was before all of this.  Internally I feel more healthy and vibrant than I ever have in my life.  It was hard at first and sugar is addictive and going cold turkey and cutting out every form of sweet food in my life was rough for a bit, but now I enjoy veggies as opposed to brownies.

This is just a brief explanation of why I have lost weight, it is not the cancer eating away at me, it is not nausea that makes it impossible for me to keep food down...  I simply changed my diet and my body now only has what it needs, no 'crap.'

I can and will elaborate much more on this, because I think every person on earth should follow a similar type of 'diet.'  It is healthy, clean and you get what you need and nothing you don't.  Many people think because they are vegan or vegetarian that their 'diet' is healthy, this is not always the case and in fact may vegetarians and vegans consume massive amounts of carbohydrates which turn into sugar and subsequently make you far less healthy.

So any girls, or guys that want to lose weight or simply want to be healthy stay tuned and I will explain to you all in great detail what it will take.  I was never big to begin with and didn't have a lot of weight to spare, so losing the little weight I did makes me look even more skinny.  If you are a bit over weight and have a lot of weight to lose, I guarantee you that within a month you will lose a great deal of weight *IF YOU ARE STRICT AND PRECISE AS I AM.  I do not cheat, and I try my hardest to stay under 50 grams of carbs, which is very very hard.

I just wanted to address this because over and over I have heard people comment on how skinny I look, I have always been self conscious about being tall, lanky and skinny and I sometimes would force myself to eat foods I knew were bad for me just cause I wanted to intake a million calories, I now know this is the complete opposite of what I should have been doing and this is my natural and healthy weight, before I was unhealthy and overweight.

If you want an easy step one in losing weight, cut out sugar completely.  Force yourself to stop eating it and any food that has sugar in it.  You will be shocked at how many foods you eat daily have copious amounts of sugar including all those juices you drink, and if you drink any type of soda and I don't care which one it is or how sugar free or low calorie it is- STOP.  NOW.  You can have one final soda and that ends it.  There is not a single benefit from drinking soda, it simply is flat out bad for you in every way shape and form.  Drinking sodas and juices accounts for a huge portion of Americans sugar intakes and for the major companies, they use an artificial sweetener called high fructose corn syrup (HFCS.)  This might as well be a slow setting glue in your blood that will eventually cause your blood to thicken.  And thick blood=higher blood pressure...Higher blood pressure means slower circulation...Slower circulation means less oxygen being distributed to your vital body cells...Most all degenerative diseases need low oxygen, high acidic environments to thrive ..This leads to millions of problems on all different scales.  You need to be afraid of sugar like you are afraid of dying.  This is step one.

...to be contnued
FTGF,
Ryan
xo

Would you throw trash and garbage in your bedroom to sit and rot for a few months?  If not than why would you throw trash into your body?  You literally are what you eat, where do you think new cells are derived from?  The source of their existence is what you feed them.  Feed them crap and they will turn into crap.  Think about it logically, not scientifically.

Sunday, March 10, 2013

Today I had my first MRI post radiation and chemo.  To say I was nervous would probably be an understatement.  The hard part about all of this is not the treatment, the diagnosis, it is not the pain or any of the other million things that accompany cancer; the hard part is the waiting.  The so called 'limbo' stage where I do not know too much one way or another.  The anxiety that this causes is unreal and anyone who has or is going through cancer will tell you the same.  The waiting game is the real torture.  Once I have an answer, at least it is confirmed one way or another, until that answer is clear I still have to know that it can go either way and one of those directions is obviously a direction I am not hoping for.  I sat in the little tunnel of claustrophobia for what seemed like an eternity and the entire time I visualized myself inside my brain leading an army of battle warriors against an army of evil.  I visualized this battle taking place in the area of my tumor and it was not once sided.  I know what is happening up there and we are losing some of the good guys, but I also am certain that with every loss of one of my soldiers we are taking out 20 of the bad guys.  I did not picture a clean battle, but one of blood and massacre.  A battle that mimics many of the worst I have studied in our worlds past and I am confident that the winning side will be my team and I will forever be grateful and appreciative for my new life.

Going forward is the start of another road, this road will be tough and filled with plenty of obstacles.  I meet with my oncologist on Tuesday, she will go over my most recent MRI and I will hear what she has to say about it. As I said before, this is the first MRI post radiation and I am certain my brain probably resembles a piece of pie at this point so she wont be able to tell me too much.  This MRI will become my new 'baseline' and a month from now will be the true test to see where this monster is headed. (Get it, 'headed?')  After I meet with Emily I will shoot over to UCLA to start my next round of the trial drug I am currently on.  This is the fun part, every injection feels like fire going into my body then I become immediately tired.  After a nap I wake up with a fun rash and a couple days of swelling and I look like I am pregnant with a small alien in the side of my abdomen.  The injection sites JUST finished healing a couple days ago and now I get to start alllllllllll over again!  Ironically, I don't even know if these are helping in the battle, but I am trying everything I possibly can so a little bit of pain is just part of the game.  Tuesday will also mark the end of my 'chemocation.'  I finished my initial marathon session of chemo which consisted of 45 days straight, minus a 3 day break when my blood counts dropped very low and Tuesday I will begin chemo again.  This time the regimen will be a bit tougher though- I will be taking double the dosage of what I initially took, but only for 5 days straight.  I will then be off chemo for 25 days, then back on for 5 days double dosage again.  This will continue on for about a year or until they don't think it is necessary anymore for one reason or another.

Like I said, it is going to be a tough road and I am not sure how my body will react to doubling the dosage of chemo that I initially took.  I skated through my initial treatment and I hope that it is the same this time around, but only time will tell.  Until then, please continue those happy thoughts, prayers, mental hugs and good vibes- I am all but sure they are helping!!!!!

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Ryan and I are currently working extra hard to get the foundation up and running.  We are working with some exceptionally talented and amazing people to help us set up the groundwork and I can not be more excited to launch it.  We have some amazing ideas in the works and within the next few weeks we will be sharing a lot of information with everyone.  I truly hope you all will help out with this new foundation as much as you have helped me through this journey.  I KNOW that we can help a lot of people who need a lot of help.  Changing people's lives is an amazing feeling and having been the one in need of help for so long, now it is time for me to return the favor.  Thank you everyone and stay tuned for some awesome things coming up, I promise you it will be fun and you will be changing lives.

There is no better feeling than to know you have changed a life for the better, to know that you have impacted someone in such a way that you have completely changed their life for the better.  No amount of money nor material possessions will ever equal the feeling of inspiring someone.

FTGF,
Ryan
xo

15 years later, still an amazing group of guys.  CREDO

Sunday, March 3, 2013

And so it begins...

I have been hinting at some big news for the last few weeks now, and I am proud and utterly terrified to finally be able to say that with the help of Ryan Kalil and a few other astoundingly amazing people, we will be setting up a foundation to help young adults live their lives the way they want to.  I have said since day one that I think the point of this life is to be happy and experience this world for all it has to offer.  There is beauty everywhere and when I was diagnosed at such a young age I felt like my bucket list turned into a tea cup list in a second.  I have been blessed to surround myself with such an amazing group of people that I was able to raise over $25,000 in less than 2 months.  This is something that I can all but guarente 90% of the worlds population would never be able to do.  This amount of money has given me a huge cushion and paid for all my medical bills up to this point.  I want every young adult affected by a terminal diagnosis to be able to do what he or she wants.  What I want to do now is help other people. This is what makes me happy and my network of friends has shown me how important it is to help someone in a time of need.

I am so thankful for everyones help, but now it is time to help others.  I have more than enough money to cover my expenses and I am now devoting my time, energy and effort all to this foundation.  I hope you all will continue to support me by supporting this foundation.  I do not care to put anymore money into research or finding a cure.  I have been tainted by the medical world through this experience and I find it extremely hard to wrap my head around the fact that after 50+ years of research they are still saying a cure is at least another 25+ years out.  Cancer has literally become it's own economy and if you truly sit back and think about the market that this illness has created you will see why maybe they are not in such a hurry to find a cure after all.  Millions of jobs are created, billions of dollars are made and a lot of very influential and rich people would loose a lot of money if a cure was found.  I am not a conspiracy theorist in the least, but come on...  This is why I want to focus on the person suffering, not the huge corporations doing the "research" to find the cure.  The cure will come one day when it does, the evil greedy doctors and pharmaceutical companies finally have to pay the piper and I can not wait to see those companies burn.

I have been meeting with people setting up the foundation and having paperwork expedited to get this up and running as fast as I can.  This is now the sole focus of my existence and I know this will make me happy.  The next few weeks will be full of meetings, setting up spaces, introducing more people and getting this snowball rolling.  I hope over time this can turn into something that will help change the lives of every young adult affected by cancer!

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It was quite ironic, last night Ryan was given the honor of accepting an award in Leadership from Servite High School.  It was a grand celebration and testament to both Servite and Ryan.  I met with him before the dinner and knowing Ryan's large network I told him my thoughts.  He immediately replied by saying he wanted to surprise me by starting a foundation for me!  He had been planning on setting this up for the last month or so and wanted to help raise money for my bills.  I gratefully and humbly declined anymore funding as I have stated I am financially secure as of now and said instead of me, lets get this going and help the thousands of other people out there that do not have the resources that we have.  It was an amazing, emotional and extravagant dinner that was only topped by the outpouring of support, love, brotherhood and family that it is Servite High School's community.

Going forward the next few weeks I will have more information and yes, this will be a 501c3 non-profit which means we will be able to issue tax deductions for donations!  I am so excited and I hope you all are as well!  More news to come very soon and have a great Sunday!!!!!!

The man, the myth the legend.  Ryan Kalil, aka Frank's son.

One of the coolest dudes I know, Matt Slater.  (NFL pro-bowler the last 2 years... No big deal.)



"Find peace in happiness."

FTGF,
Ryan
xo