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.  

True Hope

Last time I wrote a blog Jonathan was developing an infection.  We were fresh out of the hospital and on our way right back in.  I sit down tonight from the hospital room looking out the window.  I’m beginning to enjoy watching the helicopters land on the roof of the hospital. 

After Jonathan’s last round of Chemotherapy, the seizure like chills he was experiencing were in fact an infection entering his blood stream.  Upon awaking that next morning, we went right into the ER.  Jonathan’s blood counts were practically nothing and he had developed a fever that was on the rise.  He had a crazy high pulse rate and was beginning to experience chest pain.  That ended up being a very long week.  Jonathan felt absolutely horrible.  At one point during that week we had a little scare and I watched a doctor stand over my husband and ask him, “If your heart stops, would you like us to resuscitate you?”  I breathed a breath of fresh air as he tells him “yes”.  However he followed that up with, “ask me again in 3 months though!”  He was in horrible pain and was diagnosed with Klebsiella.  (A Bacterial infection)  They began treating him right away and after platelet infusions, red blood cell infusions, tons of antibiotics, etc. He began to feel better.

During that week, Jonathan and I had some very real conversations.  We are currently living the life we will have while fighting cancer.  In the hospital, out of the hospital, back in the hospital, infection, excruciating pain, fear and oh yeah, we miss our kids like hell.  We are exhausted!  What kind of life is this?  And lets just be real, not negative, but real.  So if we do all of this, what are the chances?  At this point we know there has never been someone this far progressed with inoperable Osteosarcoma, live.  What is this doing to our family?  What is this doing to our children, during their most influential years?  My husband isn’t a quitter, but what he does do, is consider everything.  Every option.  Every outcome.  Every person.  I think for him to start considering other choices, he needed to be informed.  So one day during the doctor’s rounds, he asked the big question.  How long would he have if he stopped chemotherapy treatment? 

He enjoyed his week at home and made the most of every minute.  He helped me here and there with the prep for the auction.  He worked on Lego projects, took the kids to do a few fun things and then of course in seven days played 4 rounds of golf.  He frequently would just fall asleep on the couch.  I don’t know how he does it… He just can’t miss out on any moment because he is tired I guess.

Besides the conversation Jonathan and I had with the oncologist, Jax came in at a close second for the hardest conversation I’ve ever had to have.  As we drive to school I hear from the back seat “Mommy, how do guns kill you?”  So I thought I would be very factual and scientific with my answer.  “Well Jax, you know how a gun shoots out a bullet?  When the bullet hits a person it is going so fast that it goes through your skin and inside your body where you can’t see.  We have some very important things inside our body that helps keep us alive.  For example, you know when Dr. Raj listen to daddy’s heart?”  Jax interested says “yeah, he listens to daddy’s heart beat.”  “Yes Jax, If your heart is hit with a bullet it can’t beat.  And if it can’t beat it can’t pump blood all around our body.  We need blood to stay alive.  Dr. Raj also listens to daddy’s lungs.  Our lungs help us breath.  If a bullet hurts our lungs, you can’t breathe.  So that is how a gun can kill you.”  Jax sits there for a minute looking out the window as we sit at the first red light.  As we approach the next red light I hear him say “Mommy, is daddy’s cancer trying to hurt the insides of his body?”  My heart immediately dropped.  I was wondering when he was going to ask me this… I am not ready, but I answered his question.  “Yes Jax, Daddy’s bad guys are trying to hurt the inside of daddy’s body.”  He quickly fired back, “are they trying to kill daddy?”  I sort of began to cry as we pulled into the parking lot at school.  I put the car in part and turned around to look at him as I answered his question.  “Yes Jax, the bad guys inside daddy are trying to kill him.”  I think he was getting sad already and I hope I didn’t make this harder for him by crying myself.  So as he began to cry he asked me, “Is daddy going to die?”  I told him through my tears that I didn’t know.  By this time he was crying pretty hard and saying “I don’t want daddy to die!”  So I reached back and grabbed his hand and I grabbed Jude’s hand as Jude just sat there completely unsure of how he was feeling I think.  I told them “I don’t want daddy to die either.  But I know something for sure.  Daddy isn’t going to die today!  So we need to make sure daddy know we love him and give him as many snuggles as we can.”  Then Jax remembered something from the book I wrote him.  Once again he reminded us we need to be happy.  Those bad guys hate that.  So we gathered ourselves and walked into school holding hands the entire way.  Then I cried the entire drive home.  I don’t know if a mother could ever be ready to answer that question… But I know I wasn’t ready! 

Later that day Jonathan got a call from the people running the trial out of Duke that we had applied for.  It is also an immune therapy drug using T-Cells but instead of using a virus it is using a PD1 blocker.  This trial is in a stage 2 and is being used for Sarcoma cancers.  It isn’t specific to osteosarcoma, but it is showing some promise.  So we are planning on starting this trial drug after Jonathan has a set of scans to show us if the chemo is even doing anything at all.  We are also still waiting to hear back from Houston on that trial as well.  We know they have Jonathan’s pathology slides and are working on the testing. 

Last Saturday was our big day.  Jonathan hosted his first golf tournament, and I jumped into the deep end and attempted to throw a dinner and auction.  We set out to raise $70,000 to make some updates to the oncology floor at the hospital.  We were so taken back at the generosity of family, friends and community members that were so supportive of our cause.  Jonathan announced one of our goals for next year.  We are excited because we have already begun to help change Washington Law so that we can become a charitable pharmacy and help people have access to medications they may not have due to no insurance or medications insurance maybe wouldn’t cover.  This project is actually already underway…  Anyway, we are excited to say we exceeded our goal and think our numbers are going to come in over $100,000 raised. 

This Monday Jonathan checked back into the hospital to once again start chemo.  I think he may have actually been looking forward to getting some rest!  We worked on accounting stuff for Cancer Can’t, watched some movies, took a few walks and had a few naps.  It only takes a couple of days to get stir crazy though.  We are ready to be back home. 

Jonathan and I both really enjoyed listening to Sean speak last Saturday.  He is actually a really cool guy.  His goal, spread hope!  He has this quote (I’m just making up the numbers because I can’t remember…but you get the concept) “The human body will last 30 days without food.  It will last 6 days without water, but it will only last 30 seconds without hope.  Because without hope we have nothing.”  I think for all people hope is essential to life.  We have to know that things can get better.  I could easily see how anyone in our position could begin to feel hopeless.  The answer to Jonathan’s question was this: If he stops all treatment he may have 6-8 months.  2-3 of which would have some quality of life.  We hope that a T Cell Trial works for him and he can be a first for a cure.  But mostly the doctor is hoping it will give him 2-3 years without chemo side effects.  He can keep trying chemo and maybe make it 2 years doing that. 

I find myself listening to a sermon on hope that was done a few weeks ago.  I seem to listen to it over and over.  It is my reminder that the hope for Jonathan and I may be for God to give us a miracle.  I mean we’ve given him one heck of a platform… my last blog had 5,000 views.  (Like he needs a platform)  And I will never stop praying for that miracle.  But maybe hope isn’t just that miracle, But our true hope is not of this world.  1 Peter 1:6-9 ⁶ In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. ⁷ These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed. ⁸ Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy, ⁹ for you are receiving the end result of your faith, the salvation of your souls.

This scripture is such a huge reminder of what true hope is.  Although we are sad a lot, we are also able to find joy in a circumstance I would never choose.  It is so interesting because in this sermon the pastor quoted that quote that I never understood.  ”It was the best of times, and it was the worst of times.”  I never knew how that was possible until now.  The other day as I was making breakfast, Jonathan grabbed me in the kitchen and was having me dance with him as he sang to me.  Jude yells over from the table “Dad, are you trying to marry mom?”  So I was telling a friend about how I feel so loved by him.  Even though we are sad, we are also so happy.  And she reminded me that there are people that may live their entire life, married, single or otherwise, and although our time might be short.  Most will never know a love like ours.  So even if I don’t get 50 years with him, I will always have that!