Jimmy V

He's been an inspiration for me since long before I was diagnosed with cancer.  Jimmy V told it like it was and before his death created a foundation that has since given over $100 million dollars to cancer research.





If you have the time this is a good one as well - "Cutting Down the Nets".





.......And check out ESPN's 30 for 30 episode called "Survive and Advance"


"Don't give up, don't ever give up!"

FEAR

Cancer is full of fear.  It starts before diagnoses.  Just the possibility of having cancer is scary.  And once you are diagnosed with the disease, fear becomes a part of you.  Fear inhabits your daily life.  It ebbs and flows with treatment, what your read on the internet, how people around you act, what your doctors are telling you, and how you physically feel.

Fear comes from the unknown.  Will I die?  When will I die?  How long do I have?  Is this treatment working?  Am I doing all that I can or should be doing to fight death?  

Truth is, we can all ask those questions - with or without cancer - and no one knows the answers!  No one on this earth knows what will happen tomorrow.

I think about fear.  I have been thinking about it a lot recently.  What is fear?  Why am I afraid?  I am afraid of death, but what does that mean?  Why?

I talked to my 96 year old grandfather recently, thinking that he must surely contemplate these thoughts.  He explained to me that no one here is privileged enough to know what lies on the other side but that he is sure there is nothing to fear - death will not be painful.

I'm not worried about the pain of death.  Physical pain doesn't scare me.  I used to cry a lot thinking of those I would leave behind and their sorrow.  My mom, my dad, my sisters.  All of my friends and family.  But, that has passed.  I know that they would all be just fine.

So what about ME?  Why would I be scared??  It's not the fear of pain.  Not the fear of hurting others.  My 96 year old grandfather doesn't seem worried about a thing.  Then again, he has lived a pretty complete life.  I am only 35.  Generations ago living past 35 was considered a very full life.  Maybe I need to rest my hat on that and let the fear go.  Well, that is kind of my answer.  My grandfather has well outlived expectations, but at 35, I am much too young to die based on current average lifespans.  Leaving this young would not be considered a "full" life.  And that's it - I am scared that I have not lived a full life.  That I am not living a full life.  I have not done all that I want to do.  That is where my fear comes from.

A number of years ago I went to Burning Man, a very "unconventional gathering" of 50,000+  people held in the Nevada desert every summer.  Before heading to the dessert, a Burning Man veteran that I met while shopping for supplies in Reno said this to me, upon learning that is was my first time to the "playa" - "Experience everything!  If you want to climb something, climb it! If you want to talk to someone approach them.  If you want to ride on something go ride it!  Experience as much as you can!"

In the Burning Man of life I have not yet experienced enough.  I have not tasted all that I want to taste and explored all that I want to explore.  That is what makes me afraid.

My fear is with me daily, but not too often in a teary way, more as a reminder to live the life I've always wanted RIGHT NOW.  I want to live a life of significance, of exploration, of experience, of love.  I have refocused the value of my days.  I want all the experiences that life has to offer!  If I am outside, enjoying family and friends, creating something, doing something new, exploring a new place, climbing what I want to climb, smiling at strangers like I never have, striking up random conversation, doing my best to make the world a better place, eating well, exercising, waking up earlier, getting stronger, hugging more, saying I LOVE YOU - then I am unafraid.  I am alive!  I am living the way that I should be.  The fear has shown me the value of each day and the joy and happiness it can provide.  Fear is natural - especially under my circumstances - but there is a lot to be learned from it.  Our time is short.  What would you do today if it was your last?  If you had one month left? Six months? Six years?

DO MORE.  EXPERIENCE MORE.  We all only get one shot at this life - enjoy it!  

"Life is either a daring adventure or nothing" - Hellen Keller

"You only live once, but if you do it right once is enough" - Mae West

"In the end its not the years in your life, but the life in your years" - Lincoln

Send It!

Jamie Schou

Believe

Rule #6 of Survival - BELIEVE! 

- Believe that you will succeed.  Develop a deep conviction that you will live.  

 *I will share all of my rules for survival in another post some time.

On March 2nd, 2012 I was told that a biopsy of a lump in my back was cancerous.  I didn't feel sick.  I wasn't in pain.  In fact, I was just 2 days off of an amazing 2 week ski trip in Europe.  I was skiing the beautiful slopes of the alps, partying in bars till the wee hours, exploring new cultures.  Just a few days prior to diagnosis I was with friends and a guide rappelling and skiing couloirs off of the famed Aiguille du Midi in Chamonix France.  And now I had cancer.  

From the beginning the doctors were very confident of the outcome.  They had dealt with this before and if we followed the protocol that they had in place I would be a survivor.  Sounds good to me!  Throughout treatment I had complete belief that I would be fine - I would survive.  

The process was harder than I ever imagined - the surgery more complex, the chemo more debilitating than I could have expected.  But I got through it and I was clear - NED!  No Evidence of Disease.  

Then, it came back.  In April of 2013, after one of my routine 3 month scans, I was called to meet with my oncologist.  The disease had spread to my lungs.  This time the doctors confidence had changed.   I can remember her words exactly - "A lot of people live full lives after this".   "A lot" - not "all", not "most"....."a lot".  I heard what she was saying very clearly.  Again, at the time I felt great!  I had been working out all winter - skiing, hiking, doing PT.  My strength was back and I was finally regaining some stamina.  And here this lady in a white coat tells me I'm sick.  I believed that I would be just fine.  

Once this disease spreads to the lungs there is no game plan or handbook that has shown proven results.  There are a variety of chemotherapy cocktails out there that all have similarly dismal numbers - 10%, 20% success maybe.  You pick something, give it a try and hope for the best.  If it doesn't work you move on to something else.  

So, we started that game.  Doxorubicin was first.  2 cycles and the scans showed continued tumor growth.  My oncologist referred me to a specialty clinic in Santa Monica that had some trials unavailable elsewhere.  Next drug was Gemzar + Taxotere + Morab Antibody.  2 Cycles and scans showed continued tumor growth.   

Onto the next drug, Yondelis.  The doctors words had now become - "we have one lady who has been on this drug for 2 years"  ...."oh and another patient is going on 5".  My doctor's survival description has gone from "most" to "a lot" to 2 examples of patients who have done well.  

And through all of this, if I didn't have some dork (I say that in the most endearing way.  These people are saving my life!) in a white coat telling me I'm sick I would never believe I was.  I have no signs of being sick other than the effects of the horrible drugs they are feeding me.  All of my fears, my family and friends fears are based off the words of some guy in a white coat.  Nothing visible, nothing tangible.  There's a weirdness to that for me.  I understand the science of it, the medical understanding of what is happening in my body.  But, without feeling it, all of my trust lies with the people taking care of me - believing what they say.  

Well, I chose to believe that I will be JUST FINE!  There are tough times, and down days when you hear that a drug is not working....that a scan has shown more tumors, more growth.  Through that I believe that I will survive.  I know in my heart that I will live through this challenge.  I have no choice but to believe that.   I do believe that!  

Last week I had my first scan on the latest drug, Yondelis.  The scan showed 10% reduction in the 4 largest tumors and reduction or stabilization across the remainder.  It was a big WIN in this battle.   The scans have been showing tumor growth since January.  To get a scan showing things heading in the other direction is HUGE.  This is certainly not the end...far from it, but very positive news nonetheless.

I'm a week or so out of chemo and finally getting some life back in me....getting my mojo back as one friend says.  Rule #4 of survival is PLAY - I plan on getting out to do some of that in the next couple weeks.  I hope to report back with some fun and good times.  

This blog has been a little medical focused recently, but I guess my life has been as well.  I didn't get out much with my last "time off" due to some unrelated sickness so looking to make the most of the next couple weeks.  If you are doing anything fun that I should know about let me know.   I have a friend coming into town next weekend and we are looking for some adventure.  Thinking surf trip to Santa Cruz.  Gimme some ideas!

Till next time.....

Cancer can take my hair, take parts of my body, take my time but it will never take my smile!!  

- Jamie