Thursday, April 24, 2014

A Rough Week

Few things in this life have been harder than telling my mother that I am going to die.

That was the message that Tami and I delivered to my parents today after another abdominal drain and extensive consultation with my doctor.  Things aren't going my way in the cancer department lately.  We learned this week that my time in the physical realm is shorter than we thought.  Potentially much shorter.  Needless to say, it's been a rough week for both of us.

Last week I had 3 liters of fluid drained from my abdomen.  This fluid is called ascites.  Normally it is caused by a failing liver.  But sometimes it can be a sign of something worse.  Well, it doesn't take a rocket scientist to look at my liver numbers and functions and make the assumption that my particular ascites was being brought on by poor liver function.  So we started treating it from that perspective.  We also had a routine sample sent to pathology to look for anything more nefarious.

On Tuesday we were given the news that my ascites was malignant.  This isn't good news.  In fact, it's about the worst news we could've gotten.  If you look up malignant ascites you see words like "dire" and "extremely poor" when it comes to prognosis and outlook.  When you look at the numbers, the news gets even worse (even though I don't put much stock in numbers...) with a mean survival rate of about 4 months.  Unfortunately it doesn't react well to chemo and's pretty damn nasty.

Options?  Not many.  We are looking into a new chemo drug that would give us a possible chance with the ascites, but is much less effective on my primary cancer.  Oh yeah...and insurance has an annoying issue of denying it's coverage.  I've applied for financial assistance from the drug company but I have little chance of being approved.  So, for the low low price of $12,000 every two weeks I could roll the dice.  We're hoping that the insurance just covers it and I don't have to make that decision. 

Another option is an interesting one...although a bit terrifying.  It would involve 2 different surgeries conducted back to back (10 or more hours on the operating table).  Interestingly enough, this might be the first time both surgeries are conducted at the same time anywhere in the world. 

The first is a relatively low risk surgery that would be focused on the ascites.  Basically, I would be split open right down the middle and the surgeons would try to find every bit of  tumor cell in my abdomen (none in the liver, just the abdominal cavity).  I would then be "filled" with hot water and a drug mixture that would be aimed at slowing down the ascites or making it go away for a while.  The second surgery would  involve installing an Hepatic Arterial Infusion (HAI) pump.  This is basically a super concentrated chemo treatment that lasts 2 weeks at a time and is focused on the liver specifically.  The concern here is that my liver...well...let's face it; it's not in the best shape right now.  The surgeon is currently very concerned about the idea of this surgery in my condition.  Unlike the first part, this part is high risk, with a possibility of me a) not making it off the table or b) dying within 30 days of the surgery due to liver failure or complications.

Kind of a tough choice...don't do it and look at planning my going away party in a few months...or (assuming that the surgeon agrees to do it) go for broke and potentially depart even sooner with no guarantee of prolonged lifespan.  We are looking at a 3rd option though.  When we meet with the surgeon next week we are going to ask if there is any benefit to just doing the first surgery to give a little more time to fight the ascites.  The issue with that approach is that it is a very invasive surgery and the recovery time will be extensive.  All the while I will have to suspend chemo.  That's the benefit of combining both surgeries.  The chemo to my liver would start almost immediately because it's already inserted in my abdomen.  

Of course there is always the option to simply stop treatment and spend the last few months of my life just managing pain and symptoms while I let nature take it's course.  I'm not ready to make that call right now.  I still have a little fight left in me. 

I know many of you will have questions, or want to visit.  Right now, Tami and I need some time to process everything.  If you call and we don't answer, we may be at an appointment or we may be just not answering for a bit.  Just know that we want to talk to you but may have to call you back.  As far as visits go, just be prepared to have plans change.  So many things are up in the air right now that I can't even plan the next 48 hours with any certainty. 

You will also see me making light of this situation, which may seem morbid and inappropriate...but it's how I cope and I intend to smile as much as humanly possible for the next few months.  I would ask you to smile as well.  Nothing helps you feel better than a smile sometimes.  If you need to find a reason to smile just remember how full and happy all you have helped make my life.  That's what helps me smile. 

I'm not stopping the blog.  I want to keep all of you informed and it really helps me deal with all of this.  It's also going to be a place where I can ruminate on good times and bad along with providing status updates.

After you read this I want you to find something to read/watch/otherwise experience that makes you laugh for at least five minutes straight.  And then show it to someone else.  :)

I love you all.



  1. We love you too, Jake. I have no words other than God bless and I'll keep praying.

  2. You can count on us loving you and praying for your wisdom, endurance and peace in whatever you decide. You will always be a part of our heart and a home for you to run to.

    Love, love love......forever

  3. Hi Jake! It's Robbie. I found an old Google account that I used for a project a few years ago while I was at NWTC. So, I signed up so I can comment on your blog (don't worry, the intern stench doesn't last very long). I'm not on any social network (apparently I'm on Google+ which is news to me!) Is there an alternative way to keep in contact with you? Perhaps email?

  4. Here's my laugh video, although I think some Mitch Hedberg is also necessary.

  5. Psalm 86:4-5
    Give me happiness, O Lord, for I give myself to you. O Lord, you are so good, so ready to forgive, so full of unfailing love for all who ask for your help."

    Love you.

  6. Oh, Jake. Hard to laugh at anything after reading this.

    One of my students recently sent me a very silly list of jokes that made me laugh, and maybe they will get you to laugh, too.

    Lots of love and prayers, Brady

  7. Wow, Jake so sorry to hear about all this. Praying for you for both healing and wisdom on treatments.

  8. Hello Jake, Tami and Mya:
    This is the wittigs your old neighbors in allouez. We just heard of your plight and found your blog. I am of course at a loss for words, but I do believe that if anyone can pull this out it is you. Your zest for life and love of neighbor has someone of higher order watching over you.

    Carry the fight on. We will send you all our strength through our thoughts and prayers.

    All our love to you, Tami and Mya
    Mike, Tricia, Turner, Alaina, Ben and Braden from East River Dr.