Friday, April 18, 2014

Treatment #11 - Or "How to lose 10 lbs in 20 minutes"

I've been unable to blog for the last 2 weeks because of some very intense physical and emotional pain.  Things have been going downhill for a bit now, with confusing numbers and new challenges that seem insurmountable at times.  While things with my cancer seem to be improving, things with my liver in general seem to be spiraling downward with the biggest issues being in the last 2 weeks. 

Itchy and Scratchy
For the last 3-4 weeks I've had an off and on again full body rash.  We've looked at several different causes for this with no luck.  We also have yet to find a good long term source of relief.  Of all the lotions and salves and balms, I get about 20 minutes of itch relief from calamine lotion.  20 minutes isn't a long time when everything itches for days...yes...everything.  And that's all I'll say about that.

Liquid Belly
Over the same period I've had an increasingly large abdomen, sometimes growing by the day.  In the beginning I thought it was gas pain, but as it kept growing and becoming more and more painful, we started suspecting something else.  2 weeks ago I had a CT scan that revealed fluid in my abdomen (otherwise known as ascites).  Now, we all have some fluid in our abdomen that acts as a natural lubricant for our internal organs, but not in the amounts that can been seen on a CT scan.  Just yesterday (2 weeks later) I had an ultrasound to determine how much fluid was present.  This led to an immediate paracentesis (draining of the fluid) that resulted in the removal of 3 liters of fluid from my abdomen over 20 minutes.  That means a 10 pound weight loss in less time than it takes to watch a news broadcast.  And they didn't take it all...and it's coming back already. 

This condition impacts every detail of my day.  I can't eat because of the pressure in my abdomen.  I can't sleep because every horizontal position results in painful pressure.  It's possible that the cause of my ascites (a failing liver or blocked bile duct) is also the cause of my itchiness and my restroom issues (I'm having real issues urinating now, with a typical session taking around 5 minutes to finish and only happening twice a day no matter how much liquid I consume.).  The direct cause of the ascites is an elevated bilirubin level.  Both direct and total bilirubin numbers have been high in my labs over the last 2 measurements (4 weeks).  We don't know why my bilirubin levels are high yet, but if they continue to increase at the levels we are seeing, I can expect to see jaundice in the next couple of weeks.  First the whites of my eyes will yellow and then my skin will follow.  My ascites will also continue.  If I have to have it drained too often, they will install a tap in my abdomen that I have to use to drain my abdomen at home on an ongoing basis. 

What does it all mean?

Who the hell knows at this point.  From a cancer perspective, I'm still moving in the right direction with a new lower CEA number of 86.8 and encouraging scan results.  From a weight loss perspective, I've been living with a red herring.  The only thing keeping my weight stabilized was the growing subterranean reservoir in my gut.  Even with a little fluid still stuck down there I'm at a weight I haven't seen since the early '90s.  So the weight loss continues and presents an issue when we look at what dietary restrictions pop up for treating my liver. 

My Dr is thinking that a possibility for the liver issues is drug toxicity.  This means that we cut out another one of my chemo drugs today and added the other back in.  So the zaltrap is back in and the irinotecan is out.  The benefit of this is that today has been a much better chemo day without all of the confusion and nausea.  The bad part is that it is a shot in the dark that we have to wait two weeks to see any results from.

None of this is good for my frame of mind.  Constant pain and being locked in a skin suit made of old rough wool wears on a guy.  I put a smile on my face as much as I can, but it gets harder with each passing day.  Add to that the fact that I'm still facing multiple things that can kill me pretty soon...and the general feeling around the house is less than positive at times.  But we do try to add some perspective and focus on the task at hand.  Sometimes it's healthy to stop looking at the big picture for a limited time.  We'll just take each issue as it comes up and fight like hell to overcome adversity one step at a time.

When the weird looking yellow guy sits next you in a meeting or stands behind you in line at the grocery store, don't worry about it.  He's just adding a little color to the room.  ;)



  1. Jake, I just don't know what to say. AAAAAAAAAAAAGH, I am just screaming out to God to bring you through this safe and sound. I can't believe this is happening to you and it is ripping my heart out. There seems like there is NOTHING I can do to help, but know that I am praying with all my heart and soul. May fast miracles occur for you. google orthomolecular medicine?

  2. I am at a loss for what to say that might be a small comfort. There is nothing. What you are enduring in unfathomable. My love to you, your girls, and all those in your life that are helping you through this. God bless and keep you all. Love love love, hope and prayers, and anything you might need - just call, text, email, im.

  3. Jake, I have been following your blog and I am praying for you so hard. You are teaching all of us as you go and are more uplifting than you know. Love and light and prayers like mad coming your way.