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