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

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

12 Rounds with the Devil

Monday, September 16th.

I finished my 12th round of chemo last friday.  12 rounds?!  Never did I think this is where I would be. 12 rounds and not sure what the future holds.  Knocked down 12 times...and back up again each time.  roughly 12 weeks of feeling like crap, weakness, and fatigue.  Thats 3 months of the last 2 years just spent recovering from chemo.  Not to mention the surgeries, radiation, and a nasty infection.  

I am a few days out from the last chemo - the 12th round - and I am feeling OK.  I should be have some energy and normalcy in the next day or so (I'm getting pretty good at this routine and determining when I'll recover).  So now starts my recovery.  I've done this before - 11 times.  11 times with chemo, a few times after surgery, and once after that nasty infection.  I have become accustomed to slowly hitting the gym, getting outside, paddle boarding a little, maybe mountain bike in another week or so.  The strength comes back quickly, it's the stamina that's the most challenging.  Stamina just takes more time to get back than I have between treatments.  The 3 weeks off isn't enough.  This limits my options for getting after it a little, but I do my best!

"It's not how many times you get knocked down that count, it's how many times you get back up"

I never knew that quote was attributed to George Custer, of the infamous battle of Little Bighorn - Custer's last stand.  He graduated last in his class at West Point and got himself and all 210 of his men killed in one of the biggest fiascos of the american military.  Strong quote though.

Anyway, as I get back up from this latest round of chemo I am planning my first "Between the Chemos" adventure (my goal is to get on some kind of outdoor adventure between each chemo treatment).  There are a ton of things I want to do: learn to kiteboard, climb half dome/shasta/whitney, bike moab, ski south america, ski tour europe, ski everywhere really....  The first outing on the agenda is to paddle board around Lake Tahoe in a couple weeks.  I have a week or so to get back in shape and a 4 day weather window to rip through 72 miles of lake.  Look for a complete trip report in a couple weeks.

In the meantime if you have an idea for an adventure I'm all ears and ready to Send It!

Who Am I?

My name is Jamie Schou.  I am a cancer patient.  I'm a cancer patient who loves to ski, mountain bike, hike, paddle board, and generally get outside for a good time.  I won't let cancer take that from me!

In March of 2012 I was diagnosed with a rare form of cancer in my back called a Synovial Sarcoma (referred to as "stage IV back cancer" in the movie 50/50).  The cancer was treated with 7 rounds of chemo, 25 doses of radiation, and over 20 hours of surgery.  In October 2012 I was deemed clear of disease.

In April of 2013 the disease reappeared, this time it was found to have spread (metastasized) to my lungs.  I have since undergone another surgery and 4 more rounds of chemo (2 separate regimens) that have not worked.  The lesions in my lungs have continued to grow and this week (September 9th, 2013) I will start my third chemo regimen (Each regimen is a different drug or drug combination. I went through two different regimens in 2012 as well).  The hope is that this chemo will control the growth and if so I will continue on this drug indefinitely - a good scenario would be that I am receiving this chemo for years to come...or until a better option comes along.

This new regimen is a 24 hour dose of a chemo called Yondelis, with 3 weeks off and repeat, and repeat, and repeat, and repeat, and repeat.....  Looking at a long term life of chemo is extremely overwhelming to say the least.  My life for some time has been in a constant state of limbo but there has always been a definitive goal or end point to each treatment.  Now I am going into a long term, "hold on" scenario.  As I look at my life, my calendar filled with being sick and tired for roughly a week of every three, my only choice is to adjust to this new world.  I enjoy living through activity and movement and I plan to continue that lifestyle with every opportunity that I have.  Here you will find my stories of adventure, trials and tribulations Between The Chemos.  All of our time is finite and mine has been whittled down a little more than the rest, but I plan to make the best of what I have!

If you have an adventure you'd like to share with me please let me know!  I am up for just about anything.  It is amazing how much more often you say "YES" when your time becomes more limited.  My advice for the day - say "YES" more!  and.....

SEND IT!

I go into chemo treatment later this week - round 12!  I hope to have a great story of adventure, and my first real posting coming soon.

'Till then,

"It is tough to beat an opponent that never gives up"