These are the Rules

I think at some point I mentioned that I would write about these and I have been relying on them a bit lately so here it is.

I was given a lot of books when I was initially diagnosed with cancer a couple of years ago with titles such as; Crazy Sexy Cancer (no lie - that's the title of a book), Anti Cancer - A New Way of Life, and one book that's title included "Dying Gracefully" (I didn't read that one, but hopefully there's a reference to hookers and blow somewhere in there).

Some of the books were great, others not as much but I have found value in most of what I've read.  There has been one book gifted to me that I rely on constantly in this fight.  Unlike the books that advise what to eat, drink, etc, this book explains survival at its core.  "Deep Survival: Who Lives, Who Dies and Why"by Laurence Gonzales has become somewhat of my bible in all of this.  A wilderness survival guide, this book is a combination of stories and case studies of survivors...and many who didn't survive, but throughout gives invaluable lessons about making it to the other side of extreme hardship or circumstances (no matter what they may be).

Here are the Rules for Survival as taken from the book and modified as I use them:

1) See the opportunity in the situation.  See the good

2) STAY CALM.  Keep a sense of humor and stay calm.  The hero stays cool while the villain is ruled by emotion - that's why he dies.  Humor is a vital organ for survival

3) COUNT YOUR BLESSINGS EVERY DAY.  Be grateful you are alive.  Be grateful for what you have - for WHO you have.
  *I added a TED Talk video below that I serendipitously came across just recently about the relationship between happiness and gratefulness

4) PLAY.  Play/happines/joy is the organism letting itself know that it is ALIVE.

5) SEE THE BEAUTY - See the beauty in the situation/the place.

6) BELIEVE - Believe that you will succeed!!  Develop a deep conviction that you will live.

7) Do WHATEVER is necessary.

8) NEVER GIVE UP!  Let nothing break your spirit.  There is always one more thing you can do, another option.  Survivors are not easily frustrated.  They are not discouraged by the setbacks for long.

In the end of survivors learn from and are grateful for the experiences they have had.  A part of me is very grateful for this experience - it has certainly taught me more about myself and my values than I could gain by any other means.  I do however look forward to the day when this part of my life is in my past :)


*



We all want to be happy and as the speaker suggests, happiness is the result of being grateful.  There are many things we can be grateful for in our lives - our family, our friends, maybe certain possessions or material goods - but we all have one thing in common, This Moment.  If you are reading this, if you are breathing, you are Alive and therefore have the the opportunity of this moment and it's infinite possibilities!  And for that, we can all be grateful.

I am so grateful for this moment and I am even more fortunate.  I have all of you and that gives every moment of my life infinitely more happiness!

Till next time....

Jamie Schou

Normal is Extraordinary

I am just under a week removed from my last chemo treatment - round 19.  Over the past week I have waged what has become the routine battle against fatigue, slight nausea, upset stomach, foggy thinking and a general paralyzation of my life for a few days.  Today I am a day or two away from feeling relatively "normal".  I was reading back through my journal (yes, I have a some semblance of a journal - it's weird) and found this entry from a day following a previous treatment:

-----------

"2/13/14

coming out of the haze of the last chemo.  so good to feel "normal" again.  I have this amazing appreciation for normal!  feeling "normal" is my opportunity to do everything.  to work, to play, to create, to think, to move.....chemo takes so much of that.   when i feel "normal" I get to do it again.  I am so thankful for that opportunity and don't want to waste any of it.  I want to do it all!

we are all typically normal - and all have so much opportunity with every moment of every day!

"god must love ordinary people because he made so many of us.....everyday ordinary people do extraordinary things"

- I will win
- I will beat cancer
- I will survive!
- I will be the miracle!"

---------

Not all of my "journaling" is that preachy (most of it's just random thoughts, ideas, dreams, goals) but that's what I wrote that day.  

Coincidentally, I heard the above quote in one of the Jim Valvano speeches I posted the other day - check it.

http://www.tubechop.com/watch/2213141



-Jamie Schou



I just learned today that a friend, whom I met while receiving chemo treatment at Stanford in 2012, has relapsed for a 3rd time I believe.  She is quite down about the situation as she just started a high dose ifosfimide treatment on tuesday.  In the chemo world this is known to be one of the most difficult regimens (which I can attest to).  The treatment consists of 7 days in the hospital 24/7, getting pumped with super nauseating drugs and then given 2 weeks off (barely enough time to recover) and back again.   She has been prescribed 6 cycles which will certainly be......well, it will just suck.  

Maybe we can do something extraordinary for her?!  (I'm not even sure if anyone actually reads this)....
Or what to do?  She will be at the Stanford Cancer Center - F Ground - until next tuesday the 11th (then back again on 25th and so on).  Some words of encouragement are always helpful.   Shit, I don't know.  From experience I know she just wants it all to be over......she just doesn't want to do it anymore.  She wants her life back.

Well, I'll start with a note of encouragement.  If you have any ideas please let me know and I'll send you her name.

jamieschou1@gmail.com

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

More Cancer Stuff

I know.  I haven't blogged in forever!  Sorry, just been busy I guess.

I'm just coming out of the haze of my most recent chemo and thought I'd get some thoughts down and an update in.

I forget when exactly I blogged last (I could look a page over and find out, but its easier just to write this).  I will start from my chemo treatment in early December.

I went in Dec 5th for scans and found that while most of the tumors in my lungs were stable or shrinking there was one stubborn tumor that had continued to grow from 9 to 10 cms (kind of a big something to have living in your lung).  The doctors in LA suggested researching radiation as an option for the big guy, but didn't really have a firm plan or idea of what that process would look like and left me on my own to figure it out.  Dr. Jamie had to step in again and make super important health decisions - I should get some kind of fucking degree after all of this, maybe like Dr of cancer from University of Phoenix or something.  I mean shit, sometimes the doctors just disappear from decision making and leave you on your own to gather information, decipher it and make what I would call PRETTY FUCKING IMPORTANT treatment decisions.  Do I seem frustrated?  I'm not.  Really.  I have my University of Phoenix Cancer Decision Making Degree so I'm all good.

* Quick side note - in all honesty the decision making process with this is extremely challenging as you are at times trying to decipher information that is way above your knowledge base.  My friend Jason Horn is fundraising to fund a position for a "Patient Navigator" at Walter Reed Military Medical Center.  In my opinion this would be a amazingly helpful position for the members of our military.  Please give if you feel so inclined.  Link at the bottom.

Over a week was consumed sending patient info, scans, and images from one place to another, getting appointments and finally I consulted with a couple of doctors.  The initial suggested treatment was 25 doses of radiation over 25 days but I found a radiation oncologist at UCSF that would use a high dose treatment of 8 doses over 8 days.  Good guy.  The 8 day dose wouldn't interfere with the chemo as much so I can keep blasting the rest of those fuckers. I wish I could just get in there and duke it out with them.  It would be like Diggstown; one man vs 30 tumors (I'm Honey Roy Palmer of course).  I'd punch them out one at a time.  Mano e tumero.  The last and largest tumor to fight would just fold over when I put my thumb down like a Roman king at a gladiator match.  Well, damn technology and medical advancements haven't caught up to my preferred cancer fighting techniques so back to what's really happening..... (I hope someone gets the Diggstown reference - Dave Denicke? John Cahalan?)

The radiation wasn't scheduled to start until after the new year so I continued with my scheduled chemo on Dec 26/27 (merry christmas to me).  I spent a week recovering from chemo, skied a day or two and started the radiation treatment in SF.

I was given 3 weeks off after radiation to "washout" and then jumped back into chemo last week, Feb 6/7.  And here we are.

Most of december was eaten up with 2 chemo treatments, Dr.'s visits and consults to figure out the radiation deal, and of course christmas.   So, January was my time to get back to doing shit.  I got radiation out of the way and immediately went to Lodi to do some skydiving.  My goal is to get my AFF - not sure what that stands for but means you can jump out of a plane on your own.  After a class and a few solo jumps - with an instructor hanging on to me - I learned that I suck at skydiving.  Obviously I pulled the ripcord just fine, and I did just fine at flying the parachute and landing, but turns out my tall lanky body is hard to control when falling out of the sky.  The whole concept sounds easy; jump out of plane, pull parachute. Turns out there is some skill involved and it it not just a sport of guts.  I had higher expectations for myself and felt some major disappointment with my flight progress, but I'l just have to revisit that one at a later date.

January also gave me some time to get back to skiing.  My first ski experience of the month was a total failure.  I had been through chemo recently and a number of radiation doses and I just couldn't do it.  I had to stop and catch my breath 3 times just walking from the parking lot to the ski lift.  On each run I had to stop repeatedly to catch my breathe, rest my legs, and at times it felt like I had to sit down as my whole body was giving out.  I skied 3 runs, cried a little and decided it was time to go home.

I felt like everything had been taken from me at that point.  My ability to do so much has been compromised and now skiing was being taken from me.  Skiing is a sport that I love dearly and that I receive extreme joy from.  I could not lose this.  Skiing would become my motivator to get strong again.

I took the 3 weeks post radiation and I did just that.  I skied and hit the gym.  I needed to take skiing back and all in all it was a success.  There is a long road to getting where I want to be (in so many things) but I saw great improvement in a couple weeks and I look forward to continuing improvement during my 2 weeks of feeling good now.   I am so lucky to have these sports that I love to keep me motivated to move.   It is challenging to always be reaching for something, but I am truly convinced that this is what keeps me strong in all of this.

I want to give this gift of motivation to others....which is the adventure plan for the coming months.

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

Thanks for taking a few minutes to read my ramblings.   Send It!!!

-Jamie

Help Jason support our troops in medical need -

https://www.z2systems.com/np/clients/ulman/campaign.jsp?campaign=400&fundraiser=755086&team=116

Round 15

I am sitting in my room at the Comfort Inn of Santa Monica tonight with a bag of chemo slowly infusing into my veins.   Round 15 has launched.  

The day went about as smoothly as it could have.  Flight from SF to LA was on time, car rental was smooth, my blood-work was received by the Oncologist, and the chemo got started without much delay.

I have visited this specific clinic 9 or 10 times now for meetings, chemo treatments, and tests but something today was different.  When I arrived, I looked around for familiar faces and patients, and there were a lot more teary eyes than usual today.  The other patients looked more frail, more bald, and really more sick.  My thoughts when I feel good and am removed from treatment get so far from that world.  I forget about the realities of cancer.  My mind focuses on my life - my life beyond cancer.

Today didn't bring back sadness or fear, but it did remind me how lucky I am and how grateful I am for what I have.  What I have in health compared to so many others.  What I have in loved ones - amazing family and friends.

The gentleman that sat next to me today has been fighting the same disease using the same treatment drug, Yondelis.  He was waiting for an infusion is his 36th - yes 36th! - chemo treatment today (makes my 15th treatment look like child's play).  He has been on the drug Yondelis for 3 and a half years.  Tumors are spread around the area of his hip and inoperable - a previous operation left him without feeling on one side of his body and he cannot walk.  He lives life confined to a wheelchair.  He has a $10K bed that allows him to be comfortable at home, a chair style elevator that gets him up and down his stairs at home and a supportive wife and friends.  What he wants most?  Obviously to walk!  Though not for his sake, but to relieve the stress his condition puts on his wife.  He hates the burden his condition creates and how much work this all is for her.  I could see the pain he feels...not for him, not at all for him, but for his wife.

I have been a little down on my situation because the chemo has affected my stamina more than I anticipated.  It has squashed some of my aspirations of adventure that I so enthusiastically promised myself I would continue.  I couple flights of stairs or a pedal up a short hill has me folded at the waist catching my breath.  BUT, I CAN WALK!  I am alive.  I am strong.  I can get up and down the steps, around my house and down the street to the store with ease.  I am independent, mobile, and self sufficient.  What I have is far greater than what I have lost and I am lucky to have more than so many fighting this fight.  I have friends, family, and passions in my life that make me very happy.  I am SO lucky for that.

On that note I had an awesome couple of weeks between chemos.  I was able to spend a week in Tahoe catching up on work and working with an awesome new marketing assistant.  It is so refreshing to see business moving forward again.  I can't sit around and let life pass me by any longer - regardless of the circumstances.   I spent some time in the gym, feeling stronger everyday, and even got out for my first mountain bike ride in months.  I great friend and I took a short slow ride (due to my conditioning), took in the views, caught up chatting and ripped some downhill.  It was really a treat.

This past weekend was spent in SF with a couple high school buddies - one from Tahoe and one out from Philly.  Although we don't get together nearly as often as I'd like - every time we do is hilarious, fun and so special.  We surfed and paddle boarded out in Bolinas, rode cruiser bikes around SF and generally shared a ton of laughs.  The joy of those moments are so accentuated for me now.  I am just appreciate the relationships that I am lucky to have in my life. Nothing is more important than those.

OK, that's enough of my babbling.  Keep it real.  Pray for snow.

Jamie
jamieschou1@gmail.com

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