Friday, November 30, 2012

I have been so amazingly grateful to not have the terrible side effects which the typical brain tumor is accompanied with; seizures, nausea, severe headaches, memory loss, numbness and just about every other ailment you can imagine.  In contrast to many people's stories I have read and heard about, a mild headache and some trouble trying to remember what I was thinking are two very small issues I can deal with.  This morning that all came to a screeching halt.  I woke up with the absolute worst headache I have ever experienced which eventually led to some fun vomiting.  For anyone who has been around me while I am vomiting, you all know I make sure and let EVERYONE in the immediate district know that I am vacating my stomach.  On top of vomiting which is bad enough, throwing up with an excruciating headache is a trade I think I am going to have to master.  (Not to be too graphic, but I warned you all earlier in this blog you will get the good, the bad and and the ugly.)  By mastering I mean that when I vomit, like most everyone else, I am forcing a large amount of pressure which for some reason works its way to my head.  This pressure doubles the pain in my head and makes vomiting seem more and more like torture.  Fun times, right?!?  So that was my morning and now I am feeling a bit better.   The headache is not nearly as bad and the nausea has gone away.  Now the waiting game finally has a date!

I FINALLLLLLLY have an appointment to go over my last MRI with a doctor.  Monday at 11am can not come soon enough.  I am hoping and praying that we can set a surgery date to have this removed because I am not going to be enjoying life if I am destined for more mornings like the one I experienced today.  I am not complaining in the least.  I know that even after this morning I have experienced much milder side effects then most everyone in my position.  Last night I went and had an amazing vegan dinner with the Lukas family and was talking to them about just how lucky I am.  The fact that I can sit here and type this without any trouble is proof enough that, for now I am perfectly fine.  Sure there is a little monster that wants to take over my brain, and eventually destroy itself by destroying what keeps it alive, but I know it's timeline is running very short.

Today is Friday, the first day of the weekend and the last day of November.  December will begin tomorrow and with that I am hoping a new page will be opened.  I am hoping that December will be the month that changes my life.  My sisters will be coming down in a couple weeks and I am quite hopeful that I will have this surgery while they are in town unlike last time.  With the love and help of my family and friends this will will be as they say, "A walk in the park."  Maybe not that easy, but I am up for it and I know you all are too!

And here's a joke for your Friday!

A pipe burst in a doctor's house. He called a plumber. The plumber arrived, unpacked his tools, did mysterious plumber-type things for a while, and handed the doctor a bill for $600.
The doctor exclaimed, "This is ridiculous! I don't even make that much as a doctor!."
The plumber quietly answered, "Neither did I when I was a doctor."


Tuesday, November 27, 2012

The waiting game continues...

It is both frustrating to me as well as everyone else.  It has been a week since I did my last MRI and still no word.  The next step in this journey is removing whatever is growing in my brain.  Right now I feel like I am in a holding pattern running low on fuel.  I have found myself getting more and more temperamental with both myself and the ones I love.  I know this is not me and I am fixing it.  Last night, thanks to Sue Hamrock there was a healing mass for myself and others who are currently facing ailments that are out of their hands.  I am so thankful for everyone who came including friends I have not seen since high school!  Seeing familiar faces was a type of easing therapy.  I know I am facing a monstrous wall and hearing how many loving people are in my corner continually shocks me.

It is times like these that people show their true colors- when people know you are in a tough spot and they stick it out with you.  Nobody likes dealing with illness at such a high level- nobody wants to know 'the sick guy.'  I am so grateful for the people that stick it out with me, you guys will never truly know.  The truth is, I will be fine one day and I will come out bigger, stronger and exponentially smarter.  I truly feel like I was living an ignorant life when it came to my health.  Everyone knows how bad certain foods are for you, but do we truly grasp what they do to the inside of our bodies?

I am learning things now that I wish I was taught in school and I think should be.  It is a mystery to me that we can consume the foods we do and not expect a single thing to happen to our bodies.  The meats the average American consumes contain so many hormones and additives it is no wonder our cancer rates are astronomically higher than the rest of the world.  Most people think we are a product of our genes and doomed to a certain fate if our loved ones carried a gene, this is not true.  The truth is that over 90% of all cancer cases are due to external factors.  That means that one way or another we made a choice or choices in our lives that directly contributed to our disease.  This is the reason I am so insistent with my friends who smoke or use tobacco products.  It is literally the only known carcinogen we ingest willingly.  I am not going to become the health preacher and insist everyone change their diet, that is up to you to make that choice.  Just because I have made a dramatic change in my life does not mean that everyone needs to. What I will say though, is you can make small changes that make big differences in your life.  We consume on average around 150-175 POUNDS of sugar a year.  This is up from around 2-3 pounds historically.  The majority of the sugar we get comes from sugary drinks, i.e. soda, energy drinks and yes - juices.  The truth is that most of the juices we drink and think are semi-healthy have just as much sugar as coke, some have more.  So that vitamin water you love is not as good for you as you might think.  Cancer cells thrive and depend on sugar to grow so just cutting the most sugar out of your diet as you possibly can goes a long way!

Disclaimer* For the people I see going forward who have not seen me in years, I have lost a litttttle bit of weight.  It is not from the tumor or any ailment, I have dramatically changed my diet to a far healthier and fuller diet.  In fact, today I feel healthier than I have in a very long time.  I completely cut meat out of my diet, I no longer drink, except an occasional red wine or beer and I eat mainly fresh organic fruits and vegetables.  I am starting to 'juice' and I think that everyone should do the same. (Look up juicing if ya dont know what it is.)  I intake just as many calories as I did last time I saw you, the only difference is now they are healthy calories, not burrito, In n Out and milk shake calories.  With this change it is totally natural and obvious to lose some bad weight.  Also, these are my opinions and should be taken as such.  DO YOUR OWN RESEARCH AND MAKE YOUR OWN DECISION!  I think everyone needs to make well informed choices on what they find and think to be the truth.  What we put into our body is what nourishes us, this is what our lives are based on.  We should not depend on people who have board members, CEO's or share holders to inform us- we need to decide for ourselves.  If you wish to carry on without making any changes that is your choice, there are millions of people who will never make a change and live a long healthy life, but like a gun with one bullet, if that trigger is continually pulled it will eventually fire.

I will be sharing more and more of my findings with you guys and will include credible sources and references for you all to follow up on, I hope you all will take the time to read up...

In conclusion:  I know a riddle that will make you fiddle.  It will tickle your griddle and spawn a piddle.  Would you like to hear my riddle?  What is black, why and red all over?

   A sunburned zebra.

I just got a shiny new phone so my photos are going to blow your mind!  Follow me on instagram @coffsauce    

Also, I fixed the issue which was causing so much trouble posting comments, now any and everyone can post comments and even do it anonymously!



Thursday, November 22, 2012

We all have things we are thankful for.  Family, friends, a house over our head, a warm bed to sleep in, even the meal on our plate- the many things we all take for granted on a daily basis.  We take one day out of our year to remind ourselves and others just how much we appreciate what we have.  The thing is this year I am thankful for everything.  I am so glad to be able to spend time with people I love and whom love me most of all.  The human interaction is imperative to us as humans and without this interaction, life seems like it is in some ways pointless.  If I could break down everything I believe and think I know about life and why we are here, I would say that I truly believe that our life is not measured in days, months or years, but by how much we are able to change other peoples lives for the better.  Living a life on the pursuit of money, cars and girls is a life wasted if it is not equally important to help others every chance you get.  

Last Sunday Tasha and I went to 'Friendsgiving' at Stacy, Ben and Kelsey's home.  It was an awesome meal that consisted of the typical Thanksgiving dishes and the added vegetarian options for myself, Tasha and Kellie.  Tofurkey to be exact.  Spending those 3 or 4 hours with people that really care about each other was an amazing experience.  I used to go through the motions when doing certain things and I think I am slowly learning that every moment shared with someone is a moment that is important in of itself.  I find myself truly interested in most everything people say to me, no matter how boring or repetitive it is.  I really listen now and I want to remember everyones names the second I meet them.  I never used to take the time to truly try and remember a name, sometimes they stuck sometimes they didn't.  Now when I meet people I make sure and remember their name before leaving.  It is a simple thing that most people don't think twice about.  A name is what we are branded by, how we are recognized and how people identify us.  I think every person deserves the small amount of effort it takes to remember a name.

Today is Thanksgiving.  Today I want to say thank you to all my friends and family for their support and everything they have done for me.  Today I want to say thank you to everyone who reads this mindless chatter I post on here.  I want to say thank you to everyone, this has been a tough month and I really could not have done it without all of you.  Now go stuff your belly and tell your family you love them.


Monday, November 19, 2012

An MRI is not fun.  
A functional MRI takes a regular MRI and puts it to shame.  It is longer, louder more cramped and far harder to sit still through, however you get to watch an exceptional screensaver slideshow stock on any and every Apple computer (which I have.)  

Today I went and did my fMRI's.  I had to go out to UCLA Medical to have these done since it is a very specific type of MRI and both the software used and the person reading slash preparing them needs to know exactly how to do such a thing.  Driving to LA at 9 in the morning is never fun let alone when you know you have to go and have your brain examined for an hour and a half.  We got there fairly quick and had some time to kill so I attempted to use the bathroom.  UCLA Medical is kind of strange in that it has numerous dual sex bathrooms and not too many men / women.  Well, I found a dual sex bathroom that was the closest to where the waiting room was and went to do my business.  Upon entrance, I could not get the door to lock.  For about a minute I tried and failed and eventually said forget it, I will be done in a mere matter of seconds and I doubt that anyone will walk in with such a small window of time...  Yea, I was wrong.  Literally the second I began to relieve myself a lady opened the door and was just as startled as I was.  I finished up quickly and walked out to her patiently waiting and explained I could not get the door to lock and she politely smiled and laughed.  As I walked away I stopped for a second to see if she could solve the mystery that was the lock of UCLA and for the 20 or 30 seconds I watched, she failed- just as I had.  I decided I could sit and wait there all day, but I had more pressing things to take care of so I fleeted back to the waiting room.

Suite 1501 is where I waited for a gentleman named Mike to come and retrieve me to take me to the MRI machine which was on the sixth floor.  Once in the room he went over, (in exceptionally sweaty fashion) what the MRI would be like.  *Side note - When Mike initially met me in suite 1501 I noticed he was sweating quite profusely.  I assumed it was simply because he was running late and did a fair amount of jogging to get to me on time.  Once we got the lab and were sitting at the desk, it did not alleviate- in fact it got worse...  And worse.  He eventually looked like he had partially submerged areas of his shirt in water and was literally dripping.  Oddly enough I can relate to this 100%.  I once interviewed for a job which I did not prepare for, nor knew much about.  When I continually was responding to the interviewers questions terribly I began to grow more and more nervous.  When I get nervous, I too sometimes sweat, a lot.  

So on with the show!  After the interesting walk through, I went in and was set up on the machine.  It was a standard MRI machine, however I had to wear both goggles and headphones.  The goggles covered my vision entirely and the headphones were not the most comfortable contraption ever made.  The goggle had basically a mini TV projection inside of them which showed me what was being displayed on his computer - which is where the tests were run out from.  When I was settled in and ready to begin I noticed the vision in my right eye seemed quite blurred and thought, "Great now my vision?"  But as the tests began and I tried focusing my left eye onto the right side of my goggles I noticed that it seemed more like the goggles were smeared or there was some type of abrasion on the lens.  So he began the tests and the first part did not involve the goggles or headphones so he ran a movie "Planet Earth" type video of birds in the wild.  The entire time I could not concentrate because all I was thinking about is how terrible the vision in my right eye was.  When the first part concluded I finally decided I didn't want to get too far into the scan and then have to start all over.  (This particular scan takes layers upon layers and stacks them on top of each other, all which are done at intervals and I knew that if I stopped it at a later time I would have to start all over from the beginning.)  So they pulled me out and decided to try and clean them best they could.  Jeff, the other technician came out and helped to take the devices off and found a prescription lens left inside the goggles which was also about to fall out.  Smooth move, guys.  So with that figured out, it was now game time.  Start all over with the scans and lets go!  

The fMRI consisted of about 8 different segments all which took anywhere from 4-20 minutes each.  I had to mentally make choices regarding different statements, I had to wiggle my toes and play with my fingers as well as my tongue.  The entire time having to remain perfectly still.  90 minutes of this went by and I can tell you that it is not an easy task to remain motionless on a fairly uncomfortable surface with exceptionally loud noises and strange vibrations going on all over the place.  Anyone who is in the least bit claustrophobic would not do well at this.  

I breathed the biggest sigh of relief when he told me we were done and they were going to pull me back out.  My neck was extremely stiff, my back was aching and my hands were frozen, but it was over.  The images are now being sewn together and processed for the neurosurgeon to look over and decide what to do next.  I am hoping to find out more tomorrow or hopefully Wednesday at the latest.  I now have to book a couple more appointments and I think one final MRI before the surgery.  I am more than ready to get this tumor out and start my new life.  

This experience was just another step on the road to recovery.  It was strange, walking through the hospital I almost felt like the other patients and people waiting in the waiting rooms were somehow on the same road as I.  Nobody chose to be sick and yet here we all were.  We all shared a common bond which is an uncertain fate.  While sitting in the area where the MRI's are done I saw a gurney being rolled through with a giant net like structure all around it.  Through the dim lighting I could see inside a small girl, no more than maybe 6 or 7 years old.  Her entire head and some of her face bandadged.  She looked like a small warrior.  She had gone through a battle, one that she did not chose nor want.  I do not know what ailed her, but I can only hope she comes out ok.  She was young and looked weak, but her mother was inside with her, holding her and keeping her safe.  It was a moving site and I could hardly take my eyes away even while being given instruction on my soon to be done tests.  Life is truly fragile and we take it for granted far too often.  That gurney could have been anyone of us for any number of reasons, but it was her.  A small child fighting what looked like an exceptionally hard battle.  She kind of put things into perspective and we should all say a prayer for her tonight, God has heard my name enough for now.


Tuesday, November 13, 2012

Day 22.  

I went and saw 2 more doctors today.  2 more opinions.  2 more stories on what is growing in my head.  I am now certain that I have met the doctor who will eventually cut open my skull, just not sure which one yet.  There are a few factors which need to be sorted out before that decision is made.  The next part of this process involves what is called a functional MRI.  Basically they want to map my brain and see how close areas of importance are in relation to my tumor.  The fMRI will be performed within the next couple of days, and along with that MRI they will also perform another test...  And hopefully that will be the last.  After the MRI is read and deciphered as best possible, I have a choice to make.  I get to decide if I want to be awake while my brain is exposed or not.  Awake craniotomies can only be done by a small number of doctors and I am lucky enough to have a pretty great specialist as a potential doctor.  Obviously I do not want to have my surgery done this way, but if they recommend I stay coherent so they can make sure they do not permanently paralise me or cut off a speech or memory receptor that could potentially make any reasonable recovery impossible I have no choice.  If the MRI comes back and they think they have enough room (around 3 millimeters) I will have a different doctor do the procedure.  As to which one, it is still up in the air.  I want this tumor out yesterday and I am finding scheduling surgeries is not as easy as one might think.  This tumor has long overstayed its welcome and grown to a size that makes me very uncomfortable.  

The tumor...  It is weird to think that a mere 22 days ago I was a seemingly perfectly healthy 27 year old on a seemingly normal path - and today I am weighing options and trying to decide how to go about brain surgery.  Life changes in an instant and there is nothing we can do about it.  I still can not wrap my head around (no pun intended) the fact that I have a tumor growing inside me whose ultimate goal would eventually be to kill me.  It is a crazy thought that our bodies can just turn on us for no apparent reason.  There is no absolute answer to what causes tumors or cancer, all we know is that anyone can grow one and they will continue to grow until treated.  I am still holding out that this tumor is benign, but all but one doctor so far has seemed pretty sure that I am not gonna get such great news back.  I am OK with any news they give me and I need all of you to be ready to roll with the punches as well. I have told everyone I have talked to that they need to prepare for the worst, but hope for the best.  So all of your prayers, good thoughts, mental hugs and any other hippie new age beliefs that might work are more than welcomed.  

Thank you all for your help and even stopping by to read my ramblings.  I apologize if a lot of this sounds like gibberish I'm not the greatest author, but I think I get my point across.  I hope you all are ready for an interesting ride. 


Monday, November 12, 2012

Doctors, doctors and more doctors.

Yesterday I spoke with another doctor, Dr. Liu from USC.  Dr. Liu was a very straight forward and smart man.  He is well established and knows what he is talking about so I feel comfortable taking advice from him.  He did not tell me anything I did not know already, I have a tumor in my brain and it needs to come out.  Whether or not it is cancer is still somewhat of a gray area.  He seems fairly certain this tumor began in my brain and tumors that start in the brain are either very 'good' (for a brain tumor) or very bad.  If it is malignant, the tumor will be quite agressive and more difficult to completely get rid of.  If it is benign (fingers crossed) than it won't be as difficult.  Dr. Liu broke it down for me quite simply, like in football with any pass you have 2 options - either you catch the ball or you drop the ball.  These might not be the best of odds, but they are the odds which I was handed and I am ready for the deal.

Dr. Liu is well connected in his field and knows many doctors.  He recommended a doctor who he believes is the best that Kaiser has to offer, Dr. Chen.  I have not yet met Dr. Chen, but when I do I am hopeful that he will be the one who does my procedure.  The appointment I have in LA is Tuesday the 13th of November.  I hope to meet both Dr's Pikul and Chen on the same day and get a more certain timeline as to what my surgery will look like.

The past week has been relaxing, it was much needed.  I got to spend time with my sisters, my niece, my family, my friends and my loving girlfriend.  In a way I am kind of glad I didn't have the procedure yet, it was nice to spend time with my sisters down here instead of up in Portland, although the weather was just about the same.  If I would have had the surgery done I would have been utterly useless the entire time Jo was here.

Until tuesday, the waiting game continues. . .


Thursday, November 8, 2012

On becoming an expert.

Two weeks ago, the extent of my knowledge on the subject of brain tumors was is it malignant or benign.  Today, I can say I am a borderline physician.  Doctors have an obligation to themselves as well as their patients to be honest, but not over step bounds and make incorrect diagnosis. I am beginning to realize that as far as reading an MRI to diagnose a mass in the brain, it is comprable to trying to determine the genetic makeup of a human by looking in their eyes.  I have now had conversations with 4 neurosurgeons, 2 general practitioners, 1 ophthalmologist and a partridge in a pear tree.  Tomorrow I will meet with yet another brain surgeon.  Dr. Charles Liu at USC Medical- he is basically one of the best surgeons on the West Coast if not that nation, and perhaps the world.  Between his input and the input of the copious amounts of other doctors I have spoken to, I hope to have some kind of understanding of what might be going on up in my ticker.  Each doctor has told me considerably different things and this is to be expected.  Each doctor will read an MRI based on their own past experiences.  These experiences include education, residency and surgeries performed.  EVERY doctor has a different story.  I have come to appreciate every opinion and it is up to me to decide who I actually trust the most to put my life in their hands.  

I have gone out of my way to not go out of my way.  By this I mean that's search history will not have a single query regarding anything to do with a craniotomy.  I know that every case is different, every person will experience different side affects and I do not want to scare myself.  The way I see it, the more I know the better I am prepared- true, but at the same time I can read things that will stress me out beyond what I already am.  What Ido know is this is a MAJOR surgery.  There aren't too many that are more technical aside from maybe the heart.  I know that a fairly large piece of my brain will be removed.  I know that my brain is the most important organ in my body.  And I know I will be different, for the better!  

When this is all said and done I will look back on this experience as one of the best times in my life.  I have already grown more in the last two weeks than in the past 2 years.  I was stagnent and treading water.  I now feel motivated and energized more than I can ever recall.  

The affects of the tumor are kind of showing their nasty heads a bit more, but I am strong and they will not bother me.  I know they only have another couple weeks left so I will allow them their time.  And when it is time for this monster to come out, I will take my time back and I will be stronger than I was going in. 

Today was supposed to be my surgery day, I should be sitting in a room in the ICU right now starting my recovery.  I should be past the first step of my journey, but it was delayed.  It was delayed for the better and the more I know about my monster, the better off I will be in the long run.  This is after all a marathon, not a sprint.

I leave you with some words of wisdom from Mr. Chris Martin, lead singer of Coldplay and pseudo God, "Just because I'm losing, doesn't mean I've lost."


I present to you - Water!

Wednesday, November 7, 2012

Change of plans.

A lot has transpired since my last post.  I have changed doctors, I've cancelled and rescheduled the surgery and now cancelled again*.  My new doctor, Dr. Tina Lin thinks that this isn't as simple as initially thought.  I knew all along that this was going to be a rough road and I am prepared for that, Dr. Lin just wants to make sure I am setting myself up for the best possible long term outcome.  Dr. Lin believes the entire mass (See below) is all tumor.  So all the irregular looking tissue in the scan is what she thinks is a type of Glioma.  Initially the thought was the surrounding area that looks different from the internal mass is just swelling caused by the tumor pushing against my brain.
So with the new information there is much more to take into consideration.  If in fact the entire mass is tumor, the outer most edges come extremely close to areas that are invaluable to my motor skills.  Dr. Lin wants to be able to get out as much of this tumor as humanly possible without affecting my motor skills at all.  This means she wants to do what is called a functioning MRI.  This is an MRI where I will perform tasks and answer question while a scan is being done.  This will 'light up' certain areas of the brain and she will be able to see much better just how close to the vital areas she can cut.  With this new information she recommended  I see another doctor in Los Angeles, Dr. Pikul.  This doctor is the specialist in the area of 'awake craniotomy.'  This is basically a brain surgery while I am awake, (sounds fun, right?!)  So depending on where this tumor is in relation to my motor skills area is now the question.  I am staying positive and optimistic and ready for battle.  I was ready for surgery tomorrow and I will be ready for surgery in a couple weeks.  I will update and clarify more a little later, for now I need a glass of wine and American Horror Story.


Saturday, November 3, 2012

8 years ago today was the hardest day of my life.  I lost my mother to breast cancer, actually around this time.  She passed away and I felt hollow.  I swore I would live my life in the moment, I wanted to make sure I had no regrets and I needed to leave.  In fact, no more than a month after she passed away I left.  Maybe I was running from reality or maybe I did just need to get away.  So I packed up and left my family, my then girlfriend and all of my friends to live in San Luis Obispo.  My time in San Luis Obispo was one of the best years of my life.  8 years later I miss her just as much and love her more than ever.  8 Years later I celebrated her, I did not mourn her.  8 years later the most amazing Amy Thompson had Cancer Palooza.  A gathering of people whom in one way or another have cancer affecting their life.  It has been a wild 2 weeks and to think that today was the day my mom passed away and the day of Cancer Palooza kind of makes me think.  I have never been one to believe in fait, I have never said things happend for a reason and I sure as heck never believed in destiny, but for the first time in my life I have had so many things falling into certain places at certain times that I really do have to stop and think.  Next Thursday is my surgery and I am so happy to have my mother watching over me at this time.  She gives me power and my motivation that makes me so optimistic through all of this.  The way I see it Thursday can not come soon enough.  I have a great team and am ecstatic to see my sisters.  So go give your mom an extra big hug tonight because one day you won't be able to.



Thursday, November 1, 2012

You are not promised a tomorrow nor guaranteed another minute.

All we truly have is this moment.  Last night one of my sisters best friends, Jolie lost her husband.  Mitch Lucker, father, husband and musician died in a motorcycle accident in Huntington Beach.  And just like that his daughter will now grow up without her father, Jolie lost her husband and the world lost a great musician.  All around us people are forgetting that life is a gift, a special small amount of time allotted to each of us to live, laugh and love.  It is much easier to fight and bicker than to make the tough choices in life, suck up your pride and always show the ones you love, just how much you need them.  There has never been a person to say that life is easy.  In fact, life is brutal.  Life will kick the shit out of you and then it will spit on you while you are down.  The thing about life though, is the amount of beauty and power always outweighs the bad.  The tragic passing of Mitch is another reminder to us all to truly understand just how short life can be.  If we forget for just one second or take it for granted, it could be too late.  Mitch was far too young and shined much too bright to be taken.  There are no words that can be spoken to calm Jolie's pain and when her daughter grows older, I only hope she holds the fondest and best memories of her father.  I met Mitch a few times and every time I saw him he was always so full of life.  Tattooed from neck to toe and limb to limb he had a voice like a chainsaw and a heart like a saint.  Mitch will not be forgotten anytime soon, and there is no doubt that generations will know his name for some time to come.  He died that romantic death that is all too familiar for musicians and all too hard for their families.  RIP x