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

Round 13 Complete

Just got back to SF from LA this afternoon after completing a 24 hour infusion of my latest treatment drug, Yondelis.  The is the second dose of this drug which means that before I go for my next round I get "scans".  Specifically, I will get a CT scan of my chest to monitor the activity of the tumors in my lungs.  The outcome of these scans will determine if this drug is working, and I continue on it, or if it not working and we need to find another option.

Scans are a tough part of this process.  There is a lot of apprehension, as you would expect, before each one and I have had bad scan results before - in January, April, July, and September of this year.  Each account showed signs of growth and/or new tumors in my lungs.

After the actual scan I have to wait for the doctor to meet with me and deliver the news.  In my head, before meeting with him it always goes the same way.  He walks in with a mystical look on his face and sits me down in a serious manner.  Then says something to the affect of, "I've never seen this before!  What have you been doing?!  The tumors are gone!"  I play out that scenario or something similar over and over in my head as if I can manifest the outcome...however unlikely it may me.  I have to hope, and  pray, and visualize, and pull any positivity I can for the best.....and at the same time prepare for the worst.  My experiences so far haven't been as I had hoped.  I shed some tears, take some time to think, pull myself together, and get ready for the next step.  There is a lot I cannot control in this  journey, but I can control my positivity, what I put in my body, and how I treat my body.  That is what I must focus on!

With these scans, and the determination of my future less than 3 weeks away I have to prepare for my next options.  Again, the hope, the goal, the dream is that this chemo is working to shrink the tumors and we will continue to administer this drug.  But, if does not give the desired outcome we have to move to another option.  With that, I have a few weeks to plan the next option.

The options as I see them now are this (again, only if the current treatment is not working):

1) The clinic where I am being treated now is suggesting moving to Ifosfimide.  I have been on this drug before and although we don't have data to attribute shrinkage (there are more applicable scientific terms, but we're gonna go with shrinkage) to this drug, it did at least stave off any tumor growth while I was on it.  It is a tough one, a 14 day cycle (I did 7 day inpatient treatments for 4 rounds at Stanford that may have been the most physically difficult part of this journey so far), lots of fatigue, sickness, etc.  Not fun

2) I am applying for another trial at the National Institute of Health in Maryland.  This trial is said to have had good results so far.  Trial acceptance is based on some blood sampling looking for certain proteins and some other stuff I don't quite understand.  I completed the blood tests this week and if I fit the criteria this too may be an option

3) I am also researching surgical options.  I wanna get these F&%*$&ing things outta there.  This option is dependent on a Thorasic surgeon's thoughts on success of the surgery and willingness to do it. I have some surgeons that I am reaching out to to explore this option further.  All would prefer to see some systemic results - that is to say control or shrinkage (it's just a weird word) from the chemo prior to surgery.

4) Weed oil, alkaline diet, ketogenic diet, massive amounts of LSD, I have no idea,  There is a lot of alternative treatment out there and it is all an option at this point.  Know of anything good??

That's the medical update.  Let's get back to the fun stuff!  I have a few weeks off!!  I will be pretty down the next few days, but planning out options for more adventure time.  Still looking at a Lake Tahoe paddle board trip if the weather looks right.  Otherwise, learning to kite board, getting my skydiving certification (I want to throw on one of those squirrel suits), lots of options.  Ski season will be starting soon and my adventures will become very winter focused at that time.  If you have any ideas let me know!!!

More fun to come soon!!

"Survival depends on utility, but it also depends on joy, for joy is the organism telling itself that it is all right" - Deep Survival by Laurence Gonzales

If by any chance you don't know how to reach me....
jamieschou1@gmail.com

Carrying Cancer to the Top!

In an effort to cross at least one item off of my "things I'd like to do someday" list between every chemo treatment, I planned a 3 day, roughly 72 mile paddle board trip around Lake Tahoe that was to be completed last weekend with my good friend Tom Baird.

Unfortunately, the weather gods didn't give us a 3 day window of warm temps and low winds.  It snowed a couple of nights last week and winds Sunday were forecasted to be 15 - 25mph with gusts to 40mph.  These were less than ideal paddling conditions (the point of these adventures is a good time, not a battle against nature).  There were a couple days that would have worked but we decided that it was all or nothing.  Our backup plan - if you can call it that - was to hike Half Dome in Yosemite.

Tom and I both applied for permits Friday morning (The park only allows about 300 hikers per day up the cables to the top of Half Dome - to get to the top you must have a permit) knowing that we would not get word until Saturday afternoon and hit the road from Truckee friday night.  We stayed in June Lake friday night (I promised myself that I will ski at June Mountain this winter) and headed into the park Saturday morning.  After a bit of driving around we secured a camp site about 40 minutes from Yosemite Valley and the Half Dome trailhead and met up with friends from Truckee, Jason Gifford and Sara Sarrett in the valley. I also got word that our permit came through and we were good to go.

June Lake Saturday morning

Half Dome from the valley

Sunday morning came with a 5:30am alarm, quick camp breakdown, some coffee, and a drive to the trailhead.  We were hiking at about 7:45.  The hike started a bit as I expected - it was steep and I was winded.....and there was only about 7.5 miles of steep climbing left.  I didn't do too much research on this hike, but it turns out it is almost 5,000 feet of climbing over 8 miles of trail.....and then back down.

Early morning start

I am a little over 2 weeks out of my last chemo and although I have made a point of working out as much as my body allowed, nothing was going to prepare me for this hike.  It was going to be an "off the couch" or in my case an "off the infusion chair" experience.  I figured if 300 people per day can make it up there - including some interesting looking characters,  I CAN make it up there.  The hike was steep and slow for a majority of it - I'll spare you the details of the long walk up, hiking probably isn't the most exciting blog topic - but we took our time and made it to the cables in 6 hours.

Just a couple stories from the day
1) a guy ran up behind us at mile 6-ish.  He was on the Stanford crew team and had run from the valley floor in an hour.....we reached the same spot in 4.  Impressive
2) I was wearing a shirt that read "Stronger Than Cancer".  A man stopped me on his way down and asked about my shirt.  Turns out he was diagnosed with Bronchial cancer in his lung, told by his doctors he had one year to live, had the lung removed and was walking down from the top of Half Dome 10 years later!!  There is awesome inspiration everywhere!!

The cables were an interesting experience.  Steeper than I expected and full of people of all comfort and ability levels.  I was on the" comfortable with the heights and location but tired as all hell" end of the spectrum.  The last push was completed only by climbing 20 feet at a time and resting for a few minutes, and repeating over and over until we reached the top. 

The final push up the cables

The top was an amazing reward of accomplishment, beauty and views.  To be on the top of Half Dome after hiking and climbing for 6 hours was amazing!  The day was full of many aches, pains, and slow steps but to look down on Yosemite Valley and the surrounding views made everything else fade away.

View from the top

More meaningful than anything, was the proof to myself that cancer will not slow me down, cannot slow me down.  Just because I have this dangerous, horrible disease does not mean that my life stops.  Sure, my life has changed dramatically, but I will continue to push myself and do what I love!  There are plenty more accomplishments, challenges and adventures in my future!!

"Get busy living or get busy dying".  Picked up that quote from Red in Shawshank Redemption the other night.  I am getting busy LIVING!!!

By the time we got back to the car I was exhausted, absolutely exhausted.  You know?  That good euphoric exhausted that you can only feel after a long day of physical activity.  I have been experiencing a lot of the fatigue and tiredness associated with chemo but to feel this exhaustion was to feel happy, accomplished and even strong.

I go back into chemo this week not feeling anxious or apprehensive but feeling that strength and accomplishment, not worried about feeling sick and tired but excited for the next adventure and what opportunities for enjoyment lay ahead.  I am stronger than cancer!
(for a "Stronger Than Cancer" t shirt that supports a good cause check out - http://thejackmortonfoundation.org)

Huge thanks again to Tom, Jason and Sara for watching out for me and pushing me to complete this goal!

Jason keeping an eye on me on the way down

If you are taking on an adventure and don't mind a tall, goofy, slow cancer patient tagging along let me know.   My time is a bit restricted and I have some limitations, but I'm otherwise up for anything!

Send It!

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"