Warning, This Get Graphic (By Jonathan)

I was watching a football game last weekend, if you can call it that.  The game was horrible, worst I have ever seen played in the NFL.  Even the officials looked like rookies out there.  Becky got several laughs out of my blurted tantrums hurled at the TV, which fall on deaf ears.  It came to an epic point on a forward pass that was dropped and ruled a fumble (which to everyone watching was a forward pass, literally everyone).  The refs had a mini conference decided it was a fumble and under review.  In slow motion the ball went forward 4 yards!!!  4 yards!  Not even close to a lateral fumble.  But the refs reviewed it anyway.  At some point during this, and this is an exact quote because Becky wrote it down after laughing, I said “I only have 6 months to live and you’re going to waste it on crappy calls like that?  Oh yeah good idea let’s review it, I have time!”.  It may be morbid a little but please laugh and find the humor.  Because we did, we laughed very hard about it later when Becky told me what I said.

Which leads me to time.  I don’t know if I have 6 months, 2 years, 5 years or more.  I know I am a very methodical calculated person who did very well in probability math class.  I actually had this Brainiac advanced calculus super-hot girl cheat off me that entire semester in college.  Some of you may know her (I married her). 

Here is what I know.  No one has ever survived beyond 5 years with my advanced metastatic sarcoma.  No one, period.  This counts the 1 year I have already had the disease.  At least not documented in any medical journals.  The recommended course of treatment now is chemo (ifos/etop regimen) until that one stops working.  Then try a new chemo, and another all while knowing they will work for a while but the cancer will spread.  The cancer now is smarter than the chemo, it morphs and grows.  The best case scenario here is chemo for years, in and out of the hospital feeling extremely lousy all the time.

Becky has been very careful in her blogs to protect some of my privacy as I fight through chemo.  I noticed yesterday she made a facebook post about my pain with no reference to what was actually happening.  I know there is a fine line between TMI and simply explaining to people what actually people experience while fighting this awful disease.  I’ve decided to tell you exactly what happens to me the week after getting chemo.  Becky has been such an open book that I feel like I’m doing you all a disservice by holding back.  So here goes.

I first start by getting chemo.  I’m nauseous, tired, all the stuff you already know about.  By the time I get home from the hospital the chemo has hit my brain.  I’m constantly dizzy and feel like our house is not even close to level.  Very weird feeling.  Then my white blood cell counts start to drop.  I get mouth sores which quickly spreads down my stomach and into my GI tract.  This has become the most excruciating thing I have ever experienced.  Unfortunately anything I could get in, has to come out.  I have what we thing to be numerous sores, possibly abscessed sores in my intestine.  There is no way to get medication to this area without putting me at a huge risk while having no immune system.  There are also no nerves in your intestine, they all connect out to your rectum, at which point you feel everything going on before the exit point.  The best way I can think to describe this feeling is like passing glass shards that are on fire.  This of course leads to an instant infection because now I have open sores where your body has more bacteria.  So then I get sick, really sick.  And this week I got to experience the absolute kicker.   I’m trying to make this “G” rated… from my bum to my male parts, the skin has begun to peel off.  It reminds me of when the boys had diaper rash.  This is by all means my definition of pure torture.  Unless at the hospital and on IV morphine, the pain is unbearable. 

I have decided this isn’t living.  I’m stuck in a prison cell (no conjugal visits) for 7-14 days a month and when I am home my body is to beat up or so suppressed I can’t even go for donuts with my kids. I have maybe a 7 day window each month that I can get out, play golf, go to the store or kids school, etc.   

But please understand not doing chemo and accepting the inevitable is not quitting.  I am exploring other options and will do those until the docs tell me I can’t.  I am simply choosing quality of life over quantity today.  We all have an expiration date I am just blessed to know mine is a lot sooner, which gives me the power to let go and have fun.  Live life now.  Because I have years of living to squeeze into a short period. 

I haven’t given up hope.  I pray that one of the trials works or at least gives me more time.  I truly think one will but accept the fact in may not.  As a probability person I am at least in the game now.  The cancer had a 100% advantage on me, the trials give me a chance to win as slim as it may be.  For the casino people out there I need a full house at the poker table.  Or a 5 on roulette.  But I get to be at the table now as bad as those odds may be. 

But this also bring a big struggle for me.  15 months ago, I was a normal guy who put on a tie every morning and got to work with his best friend.  We were the number 1 mortgage team in most of the state.  I came home every day, went on a few vacations a year and had a beautiful family, nice home etc.  Besides maybe a few interns at the bank I really didn’t have anyone that looked up to me as an inspiration (and by a few I mean probably none).  I enjoyed my success and just wanted to make my parents proud and raise my boys to be good people. 

Then July 2^nd 2014 happened.  My normal world turned over.  I wasn’t just a hoe-hum Joe any more.  Now I had cancer, my family had cancer.  The battle began.  Leg surgery, 9 months of chemo and I had won the battle.  Our story was spreading like wildfire and our non-profit grew to epic sizes in just months.  I began to hear things like you’re inspiration, a hero.  

One of the most difficult things to process was the compliments from people close to me.  A man I respect as a Godly strong father, blue collar hard worker said I was the toughest person he’s ever met, he works with lineman and electricians daily (truly tough men).  Or a swat trained fire fighter saying I’m a strong mother-f-ing warrior, he works with actual swat officers, police and firefighter (true warriors to me).  I don’t know why but that has always been a little difficult to hear especially from certain people who I thought were those things, but not me.

In my mind I wasn’t any of those I was just a guy who had cancer and wanted to help others.  Never walked down a street thinking I was tough, strong or a warrior.  Certainly no hero. 

I am beginning to accept those compliments and accolades.  Becky and I really have done some amazing work (Becky has, I’ve played a lot of golf).  But we have something to be proud of and be able to look back on.  And I truly did go through some of the worst moments and pains I can imagine to get there.

It’s often even harder to hear now because I’m choosing to stop recommended treatment.  Is that quitting, not fighting, not being tough or a warrior?  I know it isn’t in my heart, but it tears me up sometimes thinking all these people won’t feel the same.  But understand I’m not choosing to quit fighting, I’m just choosing to live.  I’m fighting my cancer by enjoying my minutes more each day (and kind of driving that super-hot Brainiac nuts in the process with all my cockamamie ideas).  But if you take anything away from me or my life remember we all have a certain number of minutes left.  Worry about living each of those minutes, truly living and loving those around you.  You don’t get to know when your minutes are out.

I also need to accept now the real toughness.  Not the Samson tough, tear a castle down, but the toughness to accept Gods power not our own.  Or Gideon’s warrior spirit in trusting God to send 99% of his troops home before battle.  Or Jesus for that matter, having the strength to walk right into Jerusalem knowing his fate just days away.  He could have turned around but had the strength and faith in God that there was something better waiting for him.  No more pain, sickness or death for everyone.  That’s tough!  

All that isn’t me, but it does refocus me to say there is toughness and warrior spirit outside of what our own minds limit us to.   I’m no longer a hoe-hum Joe raising his kids to be good people.  I want them to be more than that.  To be tough, strong warriors like there Dad.  I may not have all the time to do that but they have amazing men and women around them who will.

Still praying for that miracle every day and hoping I have more minutes.  But today I’m choosing to fight cancer by making the most of every minute I’m given.